Inspiration and organisation

So the day finally arrived, I have been to the Para Olympics! all I can say about the standard of riding is WOW, I will explain that in a bit. On the other hand i am going with a ggrr for the organisation. But to any one debating going, just do it, you would be foolish to miss it if given the chance.

I will start at the beginning, which for me was a very early start and a few falling objects on my head, thank you Phoenix for that wake up call. Mum and I were delivered to the nearest train station that was mobility friendly only to find we could catch the train earlier than planned, and that it like every other train was running 10 minuted late. The connection was easy, but the weather decided to turn into the normal British summer. How much did I regret leaving my leather jacket at home. Once we reached New Cross Gate we were on new ground and totally reliant on the directions I had copied from the web page. After navigating a flight of stairs not designed for crutches we found our way to the connecting bus. The bus driver was lovely and very accommodating and despite the heavy traffic we reach the venue in good time.

Now if you read the tickets and the web site the venue has plenty of food courts and space to chill and relax before and after your event, and like many others we arrived with 3 hours to spare to eat, relax comfort stops etc. Yea right! Your aren't even allowed into the venue at Greenwich till an hour before the competition starts. So along with many others, many with children we are left to wander for a few hours. Now we walked several games volunteers where we could get a coffee etc as now the rain had been replaced with a wind that could move a small child. It turns out if you go in the way we were advised to, the nearest anything is a good mile walk to Blackheath quite literally right across Blackheath. So off I hop accompanied by my 70 year old mu, who has her own issues with mobility. Although it was reasonably flat we thought it was 20 minutes before we got there, and found a little gem. A restaurant / bar called Chapters, which I can't recommend enough. The tea and coffee were perfect, staff friendly and helpful and the cost was lower than your standard coffee shop.

After an hour or so we began the hobble back, and I do mean hobble by now, and going shuffled to the front of the queue with the other more fragile spectators. They even found mum a chair which was nice as the 1pm gate opening soon became a 1.30pm. Now all these rumours about airport security are not understated. all coats and bags are x rayed, and due to my crutches I had to be frisked, something that could have been avoided if they xrayed my sticks, but no that wasn't policy apparently. Now if it wasn't for two charming old ladies who pre warned me, I would of ended up walking the mile and half across Greenwich park, but thanks to them I knew to ask for a buggy ride to the actual event. It was easy enough to get that ride when I knew what to ask for, however what was commented on and what I saw happen, was the people who just assumed anyone could use this and tried to abuse the service at the expense of those who physically were unable to manage that walk. Anyway we arrived at the venue and unlike the mainstream Olympics we found that there was a free for all regarding seating. So once we found the coffee and not the mechanise stall we made our way to the arena. Because I was on sticks I got waved into the wheelchair area which had a perfect view.

The dressage was at a very high level, and what was very interesting was the difference of assistance and physical aids each rider needed, yet they compete against each other. Some people had callers, others had a buddy horse that stood in the arena but not the competition zone to calm the horse. What was a shame was the fact there was only 1/3 of the capacity in the arena and I hope on the other 3 days will have larger audiences as it was only day one. What was happening was people who went to the morning session were dashing round to buy afternoon tickets which was nice to see. There were a few other differences to the dressage event, applause wasn't allowed as a rider entered the ring and then depending on the notification from the announcer we could either applaud the rider once the horse was back on lead rein, or in some cases wave to the rider as a show of appreciation. This was strange, but as mum explained to me the horses used for these riders aren't trained to the same level of competition with large audiences, so applause could startle them. The 1st half was blessed with no rain and just a very nippy breeze. Half time was called and the mass attack for coffee and hot food began. During the 1st half we had made acquaintance of the people next to us who looked after our seats, as we joined the masses for loo, caffeine and food. After being charged near £4 for some manky chips and nearly as much for a fluid resembling coffee, we made our way back to our seats and the heavens opened.

By opened I mean full on autumnal rain complete with icy wind. It was not pleasant, but bearable. However it did highlight a naughty problem, the plastic surfaces put down for the ease of wheelchairs and a coating of water and mud are lethal for crutches. I was doing an impression of Donald duck on ice at one point to reclaim my seat. We got there just in time to see our British competitor take the lead, the rain didn't taint his performance one little bit. The rain slowly eased as the number of competitors diminished, and by the last two just the wind remained. But not one rider let the delightful weather hamper their performance, and all of them gave their best. As the scoring was for both team and individual events, it is hard to tell you a lot except Briton is in the lead on the individual competition. As far as I am concerned, and from what I heard from those around me, each one of these riders need to be a medallist, there were riders who were blind, who had cerebral palsy  or in one case had a broken back from being a mainstream rider. But not one of them rode as a disabled person, but as an athletic representing their country at the highest level.

Despite the weather and being cold and wet to the skin, we were sad to see it end, and I think had I been fitter we would have done what a lot of others did and try to get tickets to another day. After the obligatory trip to the official Olympic stall were mum gained some badges for her camp blanket and a program of the day, we made our way out. Despite two slips on the plastic floor we made it to the shuttle to the DLR and worked our way home. Now any one with any sense would say don't attempt the DLR or the tube in the middle of rush hour on crutches. But to be honest Para Olympic fever seems to have made the commuters as a whole far more tolerant and understanding. Granted there is always the odd twit in the world, and most of them seemed to be disembarking at Morden, but as a whole it was an easy journey. So happy and very tired we went home, full of pride that we are now in a world where there is such high calibre of riding, in all abilities.

Its been a long day, but the talent we witnessed and down right courage was worth every bit of effort we spent getting there. I hope all the athletes get the recognition they deserve. I just wish some of the organisers of these events used a little more common sense when planning these events, and made instructions clearer. But as that's my only gripe it will soon be forgotten, unlike the skills with a horse I have seen. If there is one thing I have gained from today, it is no matter how bad my back etc gets, I can still do the things like riding and driving I enjoy, just in a different format. These people who participate in the Para Olympics should not be labelled disabled but instead they should said to have extreme ability.

Duvet day CANCELLED

For keen followers of my blog, you will know I have been aiming to get to the Para Olympics tomorrow more than anything. Well we are now less than 24 hours off my great adventure and I had a little break through.

For me walking is an effort at this present time, so my crutches are a big must. That is without them I end up bent at 45 degree in the middle. Well today after the worst customer service ever from my telephone banking I had to go into branch today to sort a matter out.By the worse customer service I mean the agent down the phone started every answer with "yea but !" and when I got fed up with that and pulled her up on her use of grammar, she amended it to  "yea". It got so bad she actually said "computer says no" at which point I requested a manager. No manager was available so I requested the manager call me back and was promised this, within the hour. I had also tripped this agent up because she advised me I couldn't do the action in branch which I knew was untrue. Anyway and hour came and went no call so I phoned back, only to be hung up on when I said he was on speaker phone as it concerned another member of my households account and they hung up on me. So off to the branch I went where the transfer was done immediately with grovelling apologies and an investigation promised.

Now this meant I had to get out my bed today totally unplanned and most inconvenient with tomorrows activity planned. Anyway back to the walking as I was doing the first stroll towards the bank from car park I had to lengthen my sticks. It is then mum pointed out every day this week I have gone out I have ended up lengthen my sticks one notch higher, meaning if nothing else whilst on my stick is I am getting straighter by the day. Granted that is only with the sticks but it is a step forward. It also has been noted that after an hour or so on my sticks I manage the stairs a lot easier for the first hour at home. So much as I hate them the sticks are doing some good.

Since we had made an unscheduled visit to the bank in the neighbouring town, we decided we would stop at the supermarket especially as we had nicked their free parking. That was hard work, but even going to the coffee shop first I noticed a distinct change in attitudes from a few weeks back. People were holding doors for me, restraining their offspring from tripping me up, and even helping me get things from shelves, freezers etc. Evwen though I had a very harrased parent with me who could help when she had caught me up as even on sticks I am a nightmare in stores for a 70 year old to keep tabs on. The whole experience today I found uplifting rather than a constant struggle it can be. Mum believes its because everyone has Para Olympic fever, but I would love to believe it is because everyone has become more aware of disabled needs.

The press and media keep on about the legacy of the olympics, being " inspire a generation" towards taking part in sport. I would rather that legacy be slightly changed "inspire a generation to accept everyone equally including sport". I know my long term future is not yet clear, but if the worse comes I am detirmed to return to riding and driving regardless. I am fortunate enough to live less than a mile from a leading riding for the disabled centre so that is strong possiablity. My love of cars and all things contected will never fade, visits to events like Top Gear Live are still possiable but would need more planning and granted muddy fields will need more careful negoiation. But regardless of what level mobilty I am left with I am not going to let it stop me doing what I most love in the world. The olympics will fade in time, but I pray the legacy of acceptance and tolerance will remain, so that people like myself who aren't so robust or mobile can get on with their interests and sports in the same fashion as a more agile or robust person can.

As for tomorrow I can't wait, bag is packed ready. Packed lunch is planned, tickets and money already placed in bag. Even my crutches have been cleaned ready. I have my Team GB sweatshirt ready to protect my arms, mum even has her own Team GB tee shirt ready. Cameras are loaded ready. Greenwich park here we come. As for today the planned duvet day has been cancelled, but at least it has left me in good spirits ready for tomorrow.

Back to business as usual

I blogged to early, the dull pain and lack of payback was an illusion and me as a chump believed it. In an attempt to reclaim some of my life back I attempted to walk from front room to back on a biscuit hunt, sans sticks. Mainly because I thought I didn't need them on such a short hop and also because of mud an animals both sets need a wash down with disinfectant. All was going well till I attempted the return journey and my back gave up and I was back to the 45 degree bend from my waist accompanied by the acute pain.

Like the thorns on the rose its the sharp reminder in the euphoric feeling of freedom. I guess any hope of getting stick free in the foreseeable future is not a realistic one. Which is a bit of let down, to say the least. I was hoping that the fact I was free of the acute pain, for a morning meant there was a chance of an easy reprieve or even it may ease off naturally, like a nightmare that fades in the morning. But in reality I was refusing to accept the fact that this time it isn't just going to go away like the back issues in the past. That's the hardest part thing to accept that this is going to take a chunk of my year and serious medical attention, to retrieve any possibility of having a normal type life. And even that isn't guaranteed, work regarding spinal issues is still in its infancy and any operation is still high risk, and now I have to accept that's the direction I have to go.

On the day to day front it means Thursdays outing is going to be every bit as hard as yesterdays, if not more as its 3 times as long. Not that I will allow that to stop me, there is nothing on earth that will prevent me from going and cheering our equestrian team on. Like I said I know it will cause a duvet day after. But it does mean we are going to re plan the route we are going have to go. This is because TFL don't believe in disabled access at every train station. Both my local stations have stairs that are down right impossible on crutches. Which means I have to persuade husband dearest to drive me to one of the other more suitable. It also means that the station I go from is not necessarily the one we will be able to return to as some stations have one side disabled access but not the other. Then it is pure guess work at the other end. So this could be a painfully slow journey which is on a fine time deadline.

So for the foreseeable future, thats the world I have to livein, the world the disabled are forced to live in. Where journeys have to be planned in accordance with the limited facilties available on the transport system. It is less limiting in parts of central london, but if you live in the 'burbs' or beyond its hit and miss if there are facilities available to you on public transport, which means you are reliant on driving if you can or taxis if you can afford. Whats worse is I have just heard it is a mission to get a blue badge in our borough. Apaarently even having mobilty issued DLA you aren't excused from the boroughs own medical assesment.. To make a mockery of it, I have been told that the assesment centre in in the deepest bowels of a building and one of the tests is if you can get to it you don't need a badge. It is not right that one person has to go several different medicals with different agencies just to get different parts of their entitlement. You can be given a car from your DLA for poor mobility, but rejected  from a blue badge. Bur thats the crazy world I am now faced with.

Anyway whilst I get my head round all this and learn to accept the fact it isn't going to to be a quick fix. Till then I see what tomorrow holds and hope the pain will subside enough to get some sleep.

When you have to share your duvet

I knew I would be curtailed today, that was a given. Although to be honest it is more over tiredness rather than pain I woke up early enough to wave my two tom cats off to the vets for the cruelest cut of all, that was quickly followed by a return to the land of nod.

My day really started about 1pm just in time to phone the vets for a progress report, to be told that my felines were more awake than their owner apparently and would I like to send the rescue committee to the vets surgery to save them from the newly developed choir they had there. So instead of doing the sensible thing and sending mum and husband to save the ears of the surgery. I opted to go with mum, mainly because I know those two and it takes a firm hand and plenty of layers of clothing to persuade those two to do anything when they are in one of those moods. Surprisingly when we arrive they were fairing far better than myself. For once I was up and on the move I found where the pain from yesterday was hiding. Two non tom cats firmly in baskets and loaded into car silence befell the area, only to be broken by my vocalisation of pain as I crawled back into the car.

So now finally home, we have all been fed and watered and strongly advised to return to our duvets. At present one has, one is thinking about it and one has made it his mission to emotionally black mail his daddy for the days activities. But that is usual little Cheyenne is the real fighter of the family he is one of three of my cats who have successfully survived a car incident, and even with his one lame leg he doesn't let it stop him doing anything or creating more mischief than most of the house hold put together. Eventually he will tire himself out and begrundlingy go to bed somewwhere totally unsuitable.Normally either the basket of clean washing or the bathroom shelves.But thats cats for you, totally independant and entirely arogant about their self worth. That said its the relisance of these creatures that astounds me.

Like I said Cheyenne is one of three who are survivers of car incidents, but each one of the six have had their scrapes. The eldest Garfield was 5 when he came to us having been rejected from 5 different homes prior to us. after 4 weeks of nighttime activity only he finally found his paws and gain confidence by the day. Until last year when he gained a mystery virus, it was touch and go for a week but he fought through and now we take orders from him regualrly. Jaffa, well if ever there was a cat who was never a kitten that would be Jaffa, he has been grown up since I met him at 6 weeks, until he went in the wrong house and tried to run through a pane glass window. The window won and since then he has a mild form of seizures from the injury. Branston is the cat who should never lived,  he was born not breathing and was given mouth to mouth which gave him life. Unfortunatly he is always prone to coughes and sneezes, and generally he is the sickly one. Apache his sister well she competes with Cheyenne on use of their 9 Lives, her netering didn't go smoothly, and she took time to heal, then she got smashed into by a speeding moron in the middle of the night. Not only did she make her way home through a fly light and climb up stairs to her litter tray. She managed to survive an operation to repair the damage with odds 75% against her. She also had the mystery bug last year to the same level as Garfield and then a mystery lump which required surgery. That leaves Phoenix, another car crunch victim which only caused a kink in his tail unlike Apache who lost most of hers. Appart from that he is the more robust of the group but also the athlete, and the mummies boy. Now that sounds like a list of misfits ( and I am not listing the two mutts), but imagine that list as a human family. How many of us humans would have continued as per normal post any of those truamas? Thats why I have such respect for these animals, they dont stop fighting what ever is thrown at them.

Anyway I am still tired and rapidly losing duvet rights in my own bed. These animals may be incrediable fighters, but they are also sneaky and when it comes to duvet rights they are faster.

Mission Impossiable... I think not!

OK so I did it! I made it all the way round the environmental fair. It took me 4 hours and plenty of pain killers but I did it. Whats more I have proved I can, if a little slow, manage the walking required for Thursday. So double score there.

Now let me explain this environmental fair is a bit like a big country fair, but it covers all things green and healthy. There are few Church's and mosques doing their bit for out reach work, and plenty of things like local beekeepers selling their produce, the local allotments showing what can be grown, and the fairly newly restored lavender fields selling not just the dried plant but all the potions and lotions made from it. Foe me its the way to see whats happening locally that I may of missed and a chance to restock my ever growing book collection. This year was no different, beloved husband said he felt like one of the pack donkeys I had just donated money to save, with the amount of books I bought. I got a few new fiction reads, although there weren't many that caught my eye in those. Added to that was 3 biographies, 4 cook books and a couple of historical books, oh and about 6 on religion. If nothing else that's a good 2 weeks of reading accounted for, and those that aren't up to scratch will find themselves packed of to the local charity shop for recycling.

Of course I entered a few tombolas but the only ones I seem to win on them are ones where soft toys are concerned so we now have 4 more to the collection. But this isn't just an event of greed and gain. Vital information can pass hands about local historic work, or up dates on new charity work. Whats more people aren't afraid to just come up and talk to you about things, whether you be able bodied or not. This is the one event in the year nothing seems to matter there are no prejudicial looks or comments.

 This was highlighted to me more this year when one lady just came over to where I was hobbling and started telling all about a local scheme run by the council that I may qualify for. After two long chats ( I can only stand still for so long) and plenty of literature, I have found out our local council has this scheme set up for long term chronically ill and disabled people, where they are there to assist in helping a person gain all the correct benefits they may need, help them and their carers get a holiday and the bit that interests me there is like a day care centre. how this works is your care needs are assessed and you get told how much you are entitled to in a form of credit. This credits are then passed to the scheme in exchange for sessions. Theses sessions could be pottery, computer skills, or even a specially devised gym. What session you attend is entirely up to you. For me this sounds like heaven a scheduled activity of my choice. Whats more I can get a free taxi service not just to the classes but to other things like my doctors appointments as and when I need. So providing I can get DLA this door is now open to me. Whats even more telling is not the fact of what it can do for me but what it has already done for others, for the lady who approached me had a far more poignant tale. How this scheme had saved her partner from a depression so deep and lingering he had attempted suicide multiple times because his sudden lack of mobility had affected him so deeply. The same man who as his wife described resided in such a dark place for the 5 years prior, was able to come over to me and tell me what I need to do to unlock the freedom he had found. How different places offer the use of those mobility scooters and what price I was looking at to pay for a months hire and so on. This is the kind of information that in the normal world people are scared to share. On a normal day it is almost unheard of for a random person to come over to another in the street and share this amount of personal information to a stranger, let alone say they would help me once I am accepted onto the scheme, make sure I am getting all I am entitled to with even a long term goal of gaining work in a place that would make allowances for my needs, wothout patronising my abilities.         

 

So I had a great time and plenty of real world chats with people I knew and many I didn't. I had my mind opened further to causes new and old, was able to give a few pennies to organisations desperate for contributions to maintain their good work. In fact I had a brillant day except for two things, both of which were my own fault . One I forgot to eat all day, and I genuinly mean forgot. There were more places to obtain suitable food from than you would find in a food court in most shopping vcentres. The other thing was I pushed myself so far I am expect a double duvet day till the Para Olympics on Thursday, but it was because of that I pushed myself. I had to find out if the two hour journey each way, was going to be doable via public transport. So by making myself practically continually walk from 12 pm to 4.30pm I have proved I have it in my to fo the travel by train and bus, get round the food court and then manage to sit for the events and get home. Thursday is going to be a longer day it will involve leaving at 9.30 am to get to london by 11.30 allowing us time to get through security and thenn eat and drink before a 2 pm start. Then repeat the process backward at 6pm to aim to be home by 9pm. So if I seemed crazy pushing myself today it was for good reason.       

 

I am pleased with myself today? Yes I am, I have found that grit required to do what I have to. Am I extremly tired and very sore? of course but it was worth every twinge and sharp shooting pain.Am I going to spend the next two days in bed unable to walk beyonf the bathroom? very likely but so what. Was this a mission impossiable? very nearly but thats not going to stop me. For now I am going rest up as please as punch with myself and trying not to let on to my two little boys cats that tomorrow is their snip day. I think tomorrow there will be 3 of us the worse for wear on my bed. Well at least we won't be lonely, if a little sore.

Is life random or run by fate

OK I shouldn't watch films like Final Destiny, I know that it always raises questions in my head. But I love that kind of film, the non slasher horror films so I can't help myself. This will make you laugh I can't stand blood of any quantity since I was a teen and had to deal with real emergencies and my own operations, I am terrified of knives and didn't watch a Halloween film till mid 20's and then I had to have a friend on the phone talking me through it the first time, yet there is some macabre fascination that draws me to it.

 But then this the same person who has a deep interest in the legend of vampires, I don't mean the Hollywood glossed vampires, although some of them aren't bad eye candy, I mean the religious and historic references going back to early Egyptology and the bible. Any way I am going off track back to the principle of the Final Destination film. Remove all the film magic and over dramatic story lines and the idea of visions for a moment and look at what the film is actually telling us. Is it trying to tell us, is it a case of no matter how many times we try to change our fate or destiny, it will always catch up with us and win anyway? I know we all have a life span of years, which are precursed by genetics, and these can be altered by the way we choose to live, but is there some greater force controlling it. Are certain events predestined? Yes there are basics experiences we can all reckon to have in our lives, born, nursery, school etc. But is how we deal with them exactly of our making, or some things like certain illness, certain happenings held in the toss of a coin or something more powerful.

For example we have all had our lives touch by some natural or unnatural distater in our lives, but how many times have we heard of the near misses from people. Like in the 9/11 attacks, most have us have heard of the story of the Duchess of York being scheduled to be in the towers at the time, but she decided to stop at an unprivilaged school on route, against her security advisers wishes. That in turn possiably saved her life. Now you can look at that two ways, pure luck, or gut feeling is the coomon way to see it, or you can say a greater power was guiding her it wasn't her time.

 I am not going to try and make this a great religous debate, I have read too much about toomany religons to belittle any of them, instead I am going to turn this on its head. Is this why there are such things as chronic illness and disablity. No I am not saying any one deserves the hand they have been dealt, but is it a test in the grand scheme of things. Do cerain people pull the joker card in their destiny. I was under this great illusion in my late teems and early 20s I was a robust child and going by the photos I had no reason to think anything was odd about me. That is under the GP I had at the time pointed out to me that having measles, chicken pox and mumps multiple times is not normal  for any one. Whats worse about that meeting was the fact it was pointed out to me the option of having the injections was not possiable as I have a cousin who was left brain damaged from them. I can't build any long term immunity to chicken pox even now I get a mild form of it every year without fail. That meeting was the first warning I had that my life wasn't ever going to be adverage, and in a way that doctor did me the biggest favor he gave me the facts I needed to start fighting harder than ever. Looking back I was weird, I lack the ability digest meat or fish including things like gelatine, a by product., with that knowledge the doctor gave me it was less of a chock when I devolped a more serious allergy to mushrooms and of all things bracken, It turns out my immune system is er unusual and it is genetic as my grandfather had it as well but to a lesser extent.But i have aquired other gentic traits, in fact I have just about collected every weakness from every possiable side of my blood lines. Its so bad my lovely physio to the effort to esplain how it has even affected my skelton apparently its like the top to the waist belong to a differnent skelton than below my waist and the gap between is unusually short meaning my ribs are barely clear of my pelvis.

This all very interesting you think, but how does it affect everyone else? Simple, this can not be a case of exceptional bad luck, basically because this goes beyond the riduclous. Why give some one who already has the odds stacked against them not one but three chronic illness? There can only be one reason to test us. What happens when you push some one to breaking point time and time again, they either crumble or they kick back harder than ever. Its the one thing I noticed in my friends who have their own conditions, the worse the condition the harder they fight back. The more fate throws at them the more they push back. Its almost a form of mental evolution because the physical evolution has slowed down. I think of the para olympians and the sheer grit and stubborn detirmination they have, a hundred years back they would have been written off, but in the last centuray they have hit back harder and with more force, proving that they can do as much if not more as an adverage person, heck there was one runner with both legs amputed and yet he has competed in the normal olympics and now in the para's. Then there is the race to recovery people who are out to prove invalided forces personal can still compete in mainstream rally racing. The list goes on and on its becoming the pattern in our society, we get new illnesses and injuries, and we are finding out way round them.

So how I prefer to look at it is yet life is fate controlled but its how we choose to handled it is the telling thing. I had a nickname of smiler at church when I was young, little did most people know I was already on my road of illness and such like, they had no clue I was being physically and mental abused at school, or that I was already creating a pattern of health that come back to haunt me. Maybe that was the sign I had be given a joker card but i had the stregth to not let me stop me even then. I know some where deep inside I can find that laughter back, stuff the fact I may have yet more surgery and enough drugs daily to start my own chemisty experient, I have beaten the odds time and time again and I am not about to stop now.  I don't think the greater power hat ever it is, is ready for me yet. when my time comes then it better be very ready as I have more than few questions, and please don/t tell me we are like those marbels at the end of Men in Black, I will not be amused.

For now the question still stands, and the aswer is a personal one, but either way the way you deal with is the same, so you accept the downs or do you fight back refusing to accept thats the best lide can give you or you can give life?

A chip in the wall

I don't know how and to be honest I really don't care, I am just thankful that DHSS have paid me early and I can scrape together just enough to go to the environmental fair tomorrow.  It may sound a small thing to anyone else, but for me it's a very very big deal. I can continue to go to a local event I haven't missed since it started 25 years ago. For me, that's one heck of a boost, and maybe a bit more than that.

I am still face with what is normally 10 min walk round there, so that will be 30 Min's, and then I have to take it slowly round the actual event, which itself is a mix of music, food and local causes. I don;t have enough to do my usual level of support but enough for entry and a coffee, with £5 to do what I want with. So at least it is doable, and I get out of this prison of my home. I know its going to drive my family insane the speed I will hobble round there and they will probably spend forever worrying that I don't go flying on the rough ground, after all parks and crutches aren't meant to be together, add in the mix the odd fly dog and stray child and you see how this is going to be hard work, But hard work is better than boredom, believe me I have had enough of the latter.

To be truthful the hardest bit is going to be facing people, who may or may not heard whats happened. I know for a fact I am going to have to witness a variety of looks scaling from horror, going through to concern and the worse disbelieving and smugness. Yes I have lived hard between illnesses but that doesn't mean I brought this on myself and I wish those patronising judges would disappear. Trouble is they don't think, if I knew for certain what started this back condition it would help the doctors, but there are a few possibilities, although the physio as narrowed it to two original back traumas before my back had fully developed, one a case of child abuse at the hands of a teachers prejudice, the other an accident in my late teens due to shoddy workmanship. The later being the one I first received medical treatment for. But even since then I subjected to more torture in two car crunches and being thrown into a barrister coffee machine, so I suppose it was bound to happen some day that my back bite back. But as the list reads they were all accidents bar the 1st one which was pure malice and even then I couldn't do anything to stop them. Then who was to know I was going on to develop CRPS in my late 30s, so the compounded affects are what I am know. So give me where in that mix does anyone have the right to judge me? yet I bet tomorrow I will be many times over.

That bit will be the bit that hurts the most tomorrow, as it cuts deeper than the physical pain which is bad enough on its own. But I am going tomorrow come hell or high water and if I am slightly energetic tonight I will be the one with coloured hair extensions.. that will give them something to judge me for , but personally for me its the 1st swipe of the sledgehammer at the wall.

Trying to chip away at the walls

I don't know whether its the pain that brings on the dark moods or the dark moods make the pain more acute. Either way I am suffering from both, and neither seems to have any plans to go away in the near future. I am not trying to sound morose, I am actually trying to put onto to page, the low points which most chronic illness sufferers hit a points and the kind of feelings going through their heads. It is more to help those who live or are around sufferers, so they can have an insight.

The last time I felt this hopeless was before the 2nd big operation I had for my Mastoiditus, when I was in my late teens. I had previously had one big operation about a year prior that was suppose to contain the condition. However it didn't at it left the surgeons with very few options. Mastoiditus is an aggressive infection in the ear that eat through the bone and cartilage in the ear, if not stopped it enters the blood lake between ear and brain and the patient dies the slow and painful death of septicaemia. So it is a serious illness and although you are in remission, you never totally are over it, a slight cold or ear/nose/throat infection can set it off again, hence it is classified as a chronic condition. Anyway I was saying, it was all those years ago when I went in for my big operation, the one where they removed all the infected material out of my ear, and basically removed my chances of being a professional musician with it, that I was last left with this feeling. Then I was trapped on a geriatric overflow ward as the ward I was scheduled to go onto had become infected with glandular fever. So where as last time I had been in with people my age and my visitors were more than welcome to stay longer and keep my spirits up, this time it was strict visiting hours and the voids in between. It was made worse by the fact I couldn't wear my glasses to read and on of the 3 other old dears in my ward would not allow me the TV on. The nights were haunted by another one of them screaming she was being murdered. Trust me after 3 days of that after an extensive ear operation I was ready to murder her. That was the last time I felt so helpless. I am not saying I have been ill or injured since, because trust me I have more times than I care to remember, But never have they been so long or so isolated.

So to the now, the reason I am so low is all those feelings of entrapment are back. I can't just get in the car a drive somewhere as I won't drive until I am told I can, and with funds no existent I can't do much. I am totally reliant on some one in my house to get me to the necessary appointments , so the rest of the time they have to get the household chores done in between all that, and cover all the jobs I used to. Take today for instant, most of the day has been sent by them doing the laundry, the allotment and remember to do meals and not to mention remembering to bring me the necessary drinks to take my medication with. They were so tired that since 9pm I have been left alone with my animals as they have gone to bed. So I am left alone with my thoughts and my medication. That's what is patterning my life my medication, and when to take it. Since my last post I took another look at some of my medications, and guess what one of them is know to cause depression and manic mood changes as its side effects. Am I glad the other one is also used as an antidepressant, or I dread to think what state I would be in. I guess if I don't do this checking and self analysis I wont find a way out.

It is going to take a lot to break down these walls of darkness, yes I have an outing on Thursday that's a big high, however at the moment it is filling me with dread, the fear of not being able to make it being the main reason. Its these kind of fears that are adding to the mortar of the walls. I just have to chip away at it. However the feeling of hopelessness and captivity are going to be harder to deal with. Because they are direct effects of the illnesses itself lack of movement and constant pain are very tiring and this becomes draining on the positivity I need. I realise I have not one day this week without being in instant pain. In some cases it takes over an hour to free up enough just to crawl up the stair on my hands and knees to the bathroom. On Friday the effort required to to the errands I had to left me drained to the point I have been exhausted since. Like I said the good days always come with the cost of a few duvet days. But when duvet days start feeling like a prison you know you are in a bad place mentally.

Now usually I rely on the Internet to life my thoughts and spirit, yet at the moment even that isn't working as there is so little positive going on. The only good thing is I have toughen up enough not to get drawn into the bad stuff. To the point I have had to turn the PC off several tines today and resorted to cartoons on TV to save my brain from more darkness. What you won't have realised is this blog entry has taken over three hours to type as the pain has blotted rational thought at times.

Some one once asked me how I life with these illnesses and pain, and to be honest it depends on when you ask me, On a good day easily is the answer, on in between days I just say I grit my teeth and don't give in. But on days beyond the duvet day, it is hard. Hard on me mentally and pain management way, but harder on those around me as nothing is going to appease me and it nothing you have or haven't done. It is because on those days its the illness or pain talking not the person. Its not that the person hates you or anything like that, it is rationality left the building along with gratitude when pains friend came to play. Pain and depression run hand in hand and fight them as much as you can they are going hi jacked random times of your life.

The only thing you can do as the patient is chip away at the walls they create and hope the walls fall easily, that is your main focal point, I just pray when I get through this wall the people who I have hurt and pushed away can understand that nothing is said personally.It is the only coping mechanisation I have left. Its my way of gathering strength, but also remember is its even harder to ask for help when the walls are stronger than originally though.

Feeling Like a prisoner

I know I should whine and such like, but these last few days have taken there toll on me mentally and physically and today I am at rock bottom. The real frustration of what I can and can't do has hit home and it is in direct conflict with what I want to do.

The final straw was being unable to make my own tea and toast as I have keep my weight on my crutches which rule out doing anything with my hands. That and the realisation for the 1st time ever I can't afford to go to my local environmental fair has totally demoralised me to the point I now feel like a prisoner in my own room. I am now totally reliant on some one to do the simple things for me not because I am unable to use my hands, but because they are already occupied holding me up. At near 40 years old it is hard to describe the frustration of being totally reliant on asking ones parent or husband just to get a cup of tea, because I can't even carry it from one room to another.

For the last hour I have spent the time just watching the TV and glancing outside at the world I am missing and the one time I have had planned to get out and see it, is no longer an option. I have to wait till Thursday now and the para Olympics before I will be back in the world. This feeling is made worse by the fact that rest of the household are currently at the allotment, something that I have already proved is beyond my capabilities. As the have been for the last few days and will be for the next few, as it is bramble clearing season, so for a few hours a day I am left alone feeling useless. I can't even do the laundry or something as simple as that, as every time i try to do something with out my sticks the pain is so sharp and acute I nearly black out or my legs give totally.

All this is made worse by the fact as I no longer able to work I don't have the money to do things I want to. The small amount the government gives me is so minimal it barely clears my bills and I am now leaning more and more on my mother on her fix pension to ensure I am feed. So the little outings I get are purely thanks to her or generosity of friends. I know the whole situation is made worse by the fact my husband seems to be unable to even get temp work at the moment. So not only do we have little money we are all getting on each others nerves as we can't do anything to get out of this situation unless he gains employment. But that's easier said than done, as we all know the job situation out there is bad.

I know I should be counting my blessings and not so macabre, but at the moment I am so low and generally fed up with the whole situation. Its hard enough for me to go and do the things I have to do like the doctors etc, but to then be told we can't do a majority of the fun stuff including  something that is an annual ritual. Basically all I can do is write on the PC, watch TV and stuff like that, and for me the boredom factor has kicked in long ago.

So I best go back to the TV and see if the brain cells can remember who did it in the episode of Morse I am half watching. Hopefully tomorrow my mood and the weather outside will be a bit more cheery, but for now the occasional thunder outside is about as predictable as the level of pain I am in. I know you all would like a more positive post in this blog, but even the most upbeat of sufferers have days like this, days when you are a prisoner of your illness.

Putting it in to perspective

Well I have managed it round the doctors and then the benefits agency and I was going to start off on one about it all. Then I turned the news on and suddenly my pain of getting through the day was kicked to the kerb. Another pointless shooting in America where at least 3 innocent people have been robbed of their lives. Then I  hear that in Norway the killer in that massacre has got 21 years, less than a year for each person he killed. Those two bits of news put me back in my place.

I have spent the day hobbling around on crutches, complaining why me, when I want to go faster or do more, and yes basically being thoroughly frustrated and in constant pain. At one point I was in tears from it all, and the benefits officer actually suggested I stop trying to get work and concentrate on getting stable. So its been a very emotional day. But the self pity party soon got stamped on when I saw that news and thought I actually have no right to be this morose. Over the last 10 years we have lost more people in the UK and America to gun attacks and plain terrorism that ever, and I doubt anyone, doesn't know someone affected one way or another, with it be a victim directly or a friend of a friend, or perhaps a member of the armed forces sent to protect us. As I have family all around the world from the States with my husbands family to Israel and New Zealand on my side, so we have seen the affects indirectly on more than one account. To add to that all the recent natural disasters we have had, is no wonder the amount of people suffering from stress has greatly increased in the last 5 years . How many of us have sat up through the night waiting for news of a friend or relative during one of the last tsunamis or earth quakes. I know I have.

To be honest I don't know whether this modern world of cyber has made it easier or harder. Because we are getting the news almost instantly from all over the world, we ant the answer that our beloveds are OK at the same speed, which more than often is not physically possible as the phone or Internet lines are down. This then increases the stress of any situation, sure its made the world a smaller place and it has made it easier to share news and make new friends all around the world. To be perfectly honest through the last few years I would be lost with out my cyber friends and the ease of the way I can keep in touch with life long friends and family. But there are days I have to walk away and turn it off, as I find I can get stressed over things that I can do little about. Then again to every minus there is a plus and the plus is I can help and cheer up others and they do the same for me/

Any way now I have got my perspective back in check and had a cheery tweet from @vanessariddle (check her out she is awesome) I can go back to my day without being so much poor me and report more factually. It start with a fraught trip , only because moving husband fast is as rare as devils tears. Anyway hubby insisted in accompanying me into the doctors room, mainly because he was scared i would do myself some damage if I went alone, don't ask, i don't understand how either. My doctor is a lovely young man who has a zest for life and the positive it is contagious, and because of this I have to see him monthly for my sick certification. His reasoning, and I understand his point, is to write one for 3 months can be demoralising for the patient as it is saying there is no real chance of improvement for that length of time. So for the next 4 weeks I am not able to work and by then pain clinic have got hold of me so we will know more facts. Till then my medication is not to be increased any further for pain relief so till the 17th its a case of grit and bare it. I have also had my eczema re assessed and that is not responding to the medication but increasing from the stress, honestly I now cant count the amount of blisters i have on my hands, which reminds me I need to change my nail polish design to distract from it. So I am now on a higher steroid cream and see if that works in the next few days if not its another phone call appointment and try something else. On the plus my summer cold is getting the hint to get lost its just a minor cough and sniffle now which is good. I have till next Thursday to toughen up for the paraolympics, which I have no intention of missing. Although when we bought the tickets I was meant to be going as mums carer not her looking after me, but either way we will both enjoy it. Anyway I am getting side tracked, after the doctors its was away to the benefits agency, who to be honest really weren't that bad, in fact they are also playing the waiting game to see what pain clinic have to say about it all. In the mean time I have a mountain of paperwork to fill in for DLA a benefit that will hopefully give me some money to enable me to get out and about as it will pay for the additional fuel of driving me to places I used to walk to. This along with the benefit I already get will guarantee that in the not to distant future I will be sent for that independent medical I am dreading. But like I said today's a day of getting my perspective in check and in the greater scheme of things is a medical the end of the world, I know I don't like discussing it all with some stranger and I certainly have issues about being prodded and poked by one, but if it leads to something more beneficial and may be even a way to get back to work then so be it.

Living with conditions like CRPS are hard and frustrating for not just the sufferer but all those around than, but I would sooner live with these, that have what has happen to other innocent victims today. Perspective is a wonderful thing at times, when you remember to check it.

And then there are those nights...

Its been long over due, but still I am never prepared for it. Those nights when no matter how tired I am the pain levels are so high nothing is going to enable me to sleep. Welcome to the world of CRPS. As every sufferer will tell you the pain is a very singular thing, to some people its a constant burn to others a stabbing pain. For me tonight there is both stabbing through the lower back and subsequent burning through hips, knees and feet.

There is no rhyme or reason to this kind of pain, or what can set it off, but when it hits it hits hard and little can ease it. Ive tried lying down, elevating feet sitting up, you name it I have tried it. I am limited on what else I can take on the cocktail I have been taking. It is as if my body knows that in less than 7 hours it has to report to the doctors for a review.and 5 hours later it has to repeat this findings to the benefits officer.

That's the joys of living with long term illnesses, the need to be reviewed, and then justify these reviews to some one who little knowledge of my day to day existence with pain and frustration. Its not these people don't want to understand, but more it is impossible to understand how painful it can be just to make a cup of tea some days, yet others it can be almost a normal undertaking. It nothing like a person who is living with something the loss of limb, people can see that disability, but the affects can be as crippling. Saying that when we try to explain it or have to fill in a disability form the questions are the same for everyone, whether you are missing a limb, suffering from a mental illness or a CRPS sufferer. I have heard of ex soldiers missing various limbs having to the answer the question "are they liking to gain the missing limb back" ? Seriously I know there have been progression in medical science but I don't think we have quite got that far. Its as insulting for a parent of a child born with total blindness due to a fault with the optic nerve, being ask is their child's sight like to improve in the next 6 months, How are those poor parents left to feel after that. I was asked by one officer at the benefits agency, do I take anything  for the pain that would enable me to work. By then I usually list everything I am on what its for and then get a silence followed by " how are you awake". There is my point the pain can be so great like tonight it would take a full on anaesthetic to knock me out.

I am not.saying these people are uncaring, in most cases far from it, but I really wish they would stop and think for a minute before they speak. If they realised that the person before them is struggling to walk on crutches from the main door to the desk where they have to report, and that sweat across their brow isn't for show but pure exhaustion from that effort. Or their speech is slurred or even fast an erratic it maybe from the medication they have taken to give them the mobility to attend this interview. I know for a fact I am going to have to attend a different kind of interview soon w, with an unknown doctor who is going to judge me on his own observations and if I am lucky he will read the notes from my GP, physio and by then specialist. Far enough there will always be people who try to cheat the system, but for every one who cheats the system there are ten in desperate need for help. It will be hard for me because backs are the obvious cheat, but without my crutches at the moment I am almost folded in half because my disc and vertebrae can't stand the pressure. Mixed with over stimulated pain sensors courtesy of CRPS and its painful. But pain is hard to explain, how do you tell someone that the pain courses from your lower back to knees is so sharp you could scream 24/7 and you never know when you put your foot down whether the leg is going to support your weight or crumble due to the pain. For me the scariest one is walking up or down the stairs in case i physically lock up or stepping up to the foot stall and being jammed cursing in pain and scared to move back down because the muscles are screaming in pain so much that I am fearful if I move i am going to tear a muscle or worse.

That is my life and at the moment there wont be sleep for quite a while until my brain gets bored with the pain and tunes it out. But for now I am watching yet more junk TV frying a few brain cells and remembering the days that were free from pain.

GCSEs and summer colds

It is a long time ago I was in the position of today's 16 year old. waiting for those dreaded results. But today was my god daughters turn and that of a few friends, and I remembered that dreaded feeling of opening the envelope. In my case it was followed by the sickening disappointment that my last five years weren't worth the paper they were written on. I had a back up plan though and a year later I was in the same position but this time the results were far more to my liking. But what I have noticed this time round is something that wasn't there in my day. Peer and parental pressure!

In my day there was certain expectations, be we always had a back up plan and it was no great hassle if you did a year of resits, or  in my case actually got to do the subjects I originally wanted. But now its a matter of not if you got any grades above C well done its how many A or A* you got and basically anything below a B isn't worth anything. Being stuck on  duvet day, as well as the dreaded summer cold has finally found where I have been hiding, I have had the time to peruse various college options on behalf of my god daughter, and boy was it an eye opener. All the labelling of academic achievement that in the 1980's and 90's had been removed is back with force. To be honest there is less cut throat competition in the Olympics than getting your off spring through to the next stage of education. I guess I was lucky I had been subjected to such a bad experience through out my formative education give or take 3 years when I was put in a junior school that understood me, my family had already accepted my grades weren't going to be reflective of my true possibilities. Hence we had a back up plan of a local college offering subjects I wanted to do and with an adult system of learning far more suited to myself. But if I was in that situation now I wouldn't stand a chance, I wouldn't have stood a chance of getting into college and would have been forced to endure two more years in a place I couldn't stand.

I have spent the day talking to other people about it and its a common thing that is creating some majorly competitive parents who are relying on their offspring to perform to the level of the peer expectations. Whilst I reach for another tissue due to Rudolf nose I am wondering how much the sales of Kleenex have increased due to tears of Joy and in affect disappointment. Whilst some families are out celebrating for achieving the dream for which they have worked bloody hard others are left pondering their options and trying to work out what went wrong. It seems an almost medieval torture of introduction to the adult world of disappointments and failure. I can only feel concern for the youth who are subjected to this level of stress so young. Are we now robbing them of their youth with adult expectations, and if so are we returning to a Victorian era of childhood being nothing more than making miniature adults?

As I write this they are now implying the exam borders are deliberately marking down the grades. So not only do these children struggle to achieve their best they are now being used as pawns in a political game they can not even vote for, Its a nasty enough world out there as we all know, so why expose the next generation to it earlier than they have to be. Even at school they are penalised for ill health despite the fact children's immunities are lower till they are 18, and why do they hold the exams in a season notorious for hay fever suffers. Everything is weighted towards a world filled with failure for these children.

Life is hard, I know that 1st hand as being a chronic illness sufferer it is twice as bad, because no one wants to take the gamble of  employing me due to my sick record, but I am nearly 40 and my experience of life has made me tougher, if you asked me to cope with the life I have now at 16 I doubt I could cope. So as I return to my coughing and sniffing, dreading tomorrows doctors review I pray that all those who have received their results today can find the right path to forward to the next step. Whatever your grades well done to one and all.

The OUCH factor

Yep it should be a duvet day, but now I have new found freedom I thought it a good idea to accompany mum to the allotment. I know in retrospect it was a crazy idea, the uneven ground and crutches just don't mix. But it was nice to get out and go somewhere where shoppers and baby buggies can't send me flying like a skittle pin. It was achieved with much ouching and owwing from me and I got to stand on the side and yell instructions from the peanut gallery. But it was frustrating seeing how much needs doing and knowing the chances of me being able to help this year are very low.

So now I am paining the price, surprisingly not so much my back or even my shoulders its the little bit above my elbows which keep getting pinched by the arm rests of the crutches. It has happened so many times today i now have a nice line of bruises on each arm. So the rest of the day will be spent working out how to prevent this being a permanent feature. With this British weather I can't be expected to wear long sleeves all the time, so its research night. I have a feeling it will involve crepe bandages and tape. Any one with any ideas please let me know.

Anyway that's my plan for the evening, but it has got me think how do the designers come up with these designs and what spurs them on to do so. If you think about it there is so simply but complex designs in a simple set of crutch's. There are two spring loaded adjustment points on each set to make one set suitable for most. heights. Then there are the rubber stops on the ends to stop skidding. and then there are those wonderful arm holders which have the hindges to make it easier to get in and out of. It is these hindges that are source of my soreness. I guess most people don't try to navigate an allotment or similar on the sticks but it does show the constant need for these wonderful people who design and test these mobility aids. Its the same for the chemists and such how design the new improved drugs. Its like one of the medications I am on was originally designed by its creator for epileptics to prevent seizures, it was only when he aquired a back injury himself did he he find that both that medicine and another one used for anti depressed worked marvels for reducing back pain. So it like so many drugs were found to have double use, making them a more valueble invention or discovery.

As those inventors have found double useage I am trying a double useage for a piece of fashion clothing and please dont laugh. the temporary suggestion to my ouch factor is to use leg warmers on my arms when walking about on my crutchs. So for the next few days we will give that a trial. I expect some weird looks as all we have in our house is neon 80s left overs of leg warmers, but if it works I guess I will be on Ebay replacing the neon to more subdued colours. But hey it my change my ouch factor to an x factor.

Some times we all need a little help

This morning I spent in the company of the NHS, or in other words at my GP surgery. Nothing unusual there, it is so frequent at the moment I have expect to find my name etched on a chair soon. The doctors visit was fast and furious and the annoying blisters on my hand are nothing more than stress related eczema, It was the secondary appointment with my physio that was enlightening, after her initial shock or more like horror at the state I was in. She almost sent me straight back to the GP, until I pointed out he was already 30 Min's behind and I do have another appointment for back review on Friday anyway. Then she ummed and ahhed for a good few minutes before daring to suggest a course of action. After much pondering and deliberation I am now on crutches and will be for the foreseeable future. Whilst this is seeming to have a very positive affect on my spine and certainly I am more mobile I am now suffering full blown CRPS in my hands as they are having to take the strain.

Its early days but after an initial panic moment where I nearly ended up on my way to hospital at least my physio found a way out of it. Yes its going to be tiring for a while and painful on my hands, but long term it may reduce the duvet days, or if nothing else give me some mobility till pain management clinic in 3 weeks. How ever I did get some explanation which helped me understand some of the issues I am having. I am no medic but I am going to try to pass on the little gems I gleamed. For starters anyone with CRPS will tell you the pain you feel may not be in an area of injury, there is a reason for this. Imagine your pain atoms are little people who are over hyped on say energy drink. They wont sit still, and because of this they are always over reacting whether or not they need to. This also has an interesting side affect and explains one of the nasty side effects I am having. Because these little atoms are over active they are also bouncing around in your brain crashing into things, not necessarily related to pain. The most common of this is your sensory receptors. Hence in my case I can't stand even salted butter at the moment. This is a strange reaction until I was told a medical example. which I will pass on.

There was a baker who unfortunately lost his arm in an accident in his bakery. After months of intensive medical treatment, he was home and living a fully adapted life but for one thing, every Saturday morning he was left screaming in pain from his missing arm. The doctors were totally baffled there was no medical reason for his pain, and there was nothing he was doing on a Saturday that would obviously trigger such a reaction. Until a neurologist asked him to list everything he ate said the works on these days particularly in the the few hours before each attack. Every Saturday morning the mans workers at the bakery would delivery a fresh out of the oven loaf of bread to him. It was the scent of the freshly cooked bread that was triggering the attack of pain as it became a sensory memory of the accident.

Now that is an extreme case of how CRPS and very intensive pain can do in long term damage to the body. What's worse is the people like myself whom have a high pain tolerance, as we don't vent the pain and release the energy building up from the over excited atoms. So the reaction goes inward attacking other things like the sensory receptors.So there is the explanation, and I hope that helps those who suffer or live with those who do.

So today although very stressful, and  despite adding more potions and lotions to my ever growing supply, it has presented me with a big learning curve. So I have gained some metal work to help me move about, which it itself is going to limit me from doing things like Surrey Street as I cant pull a trolley on crutches. It does mean my overall freedom will be long term increased. Yes I am still facing an MRI and possibly an operation as a last resort. But for now, after accepting the fact I couldn't continue with out help we have taken a big leap forward. Now where is the radox, my arms are killing me :)

Just another day in paradise.. yea right

Some days would be better if they never were. Today being one of those, I am not saying anything went majorly wrong or anything, it just seemed to be stressful for stresses sake, if that makes sense.
Everyone seemed to be irritating each other or not listening to each other, humans, felines, and canines alike.  Jobs took forever to get done and some of those never did, instead they are now filed in the Sharon will do tomorrow file, despite me already having enough on my plate. Yet looking back on it there was no one specific reason why the day should have been like that.

Days are funny things when you are little and waiting for something to happen they felt endless, but when it was school holidays or birthdays they disappeared at twice their normal speed. As an adult its a case of blink and you have lost a month. I always seem to see time as a rugby shaped ball when talking about the year but the one side runs from January to august with April and may being the bulge then September to December the other side with Halloween as the bulging bit. Crazy I know but it may have a lot to do with most of the families and friends birthdays being on the 1st side of the ball and the rest in October or December or it could just be my birthday is in October and there are exactly 12 weeks to the day between my my birthday and Christmas day. A point I have always used to my advantage what I didn't get for my birthday always has and still does get moved to my Christmas list. Anyway back to my point we the human race always look for a way to measure time when in reality its not an exact science , and before I have the worlds scientists on my case let me explain. For a start the principle of hours is purely a man made measure to divide the light and dark hours but as we all know this varies depending on the seasons. Then there are the number of days in the month, why do we have more in some months to another? To take it further there aren't an exact amount of whole days in a year, why ? because the idea of  year is again a man made name. All we know is we as a planet take x figure of whatever you want to call it , and we spend x in darkness and x in light subject to where we are on our flight round the sun. As has been scientifically proof that can vary as well due to natural occurrences like massive earth mass disturbances can tip our axis slightly affecting all the about. Now I know some of you will be asking where on earth am I going with all this?

Simple it dawned on me its not the number of days or years we live as that varies like the months number of days person to person. Its what we achieve with our allotted time. I realise we aren't all going to be a Mozart or a Florence Nightingale, but think more butterfly affect, you know a butterfly flaps its wings in China and there is a storm in South America. What I have seen since I started using the Internet and that is the effects good and bad a single tweet or face book post can have not just for the intended person but a mass of people. How people  or rather I highlight  children such as the late Harry Mosley or the very much alive Vanessa Riddle can make adults wake up to their lives and illnesses, that is such a plus to the world. Then there is always the rough side the trolls as they are now known , but I am not wasting time on them. There is the butterfly effect in practise and perhaps now it is even more affective. It was actually people like those children who made me wake up and start this blog to see if it could do some good, but putting out there how I cope with each day whether it is a good day or duvet day.

So as I said at the beginning of this some days are more trouble than they are worth, or are they? Just because we feel we haven't succeeded or achieved anything worthwhile in our eyes, we don't know what kind of affect we have had not necessarily on those close to us, but maybe further afield, did we smile at a stranger? if so was that the only smile they had received that day or something like that.. This time alive is our time in this paradise, use it wisely because no one gets out of here alive, but we can live on in the memories of others.

Those little challenges sent to try us

I should have seen this one coming, after all these years and all the different medications I really should know to expect the unexpected and inconvenience. After finally getting some sleep I woke up this morning to the most annoying of new symptoms. The sore mouth bit I am used to,except at the moment I can't even manage butter on bread or my beloved marmite. In fact just smiling hurts! Its the other symptom that's new to the mix a blister type rash on various parts of my hands and fingers, in one place so inflamed it is catching when I move my little finger.

So this morning has been spent on the phone trying to get that elusive thing called a Monday morning doctors appointment. Needless to say I failed in that, how many people really need the doctor on a Monday morning? So then came the 3 hour wait to get a doctor to call me. Bless him I have a very patient and practical doctor who doesn't seem to mind calling me in his lunch break as apparently half of the town were in the surgery this morning. Result there are no spaces today but he has informed me I have show up tomorrow which means back to the telephone at 8am tomorrow morning and sit in an endless queue till I can finally get answered by an over worked receptionist.In the meantime I am stuck with a sore mouth and blisters on my fingers worthy of their own post code.

It's not the first time I have suffered side affects, I, like a lot of people have suffered from the medicines designed to make us better and in few cases have ended up with a night stay in the local accident and emergency unit of the hospital due to these reactions. Its not so much the side affects that get me down its just the fact it slows me down and that causes my morale to drop. Not to mention there is now the big challenge of what can I eat that doesn't hurt, answer not a lot tea is my friend and that's about it.

Although it does raise the question, why are our bodies programmed to challenge us at the most inconvenient of moments. Over the years we have successfully needed the services of our emergency department on Boxing day, a broken finger out of line, New Years Day, Kidney infection  5am on a Saturday morning, toxic shock from medication and so on. And it doesn't just seem to be my household. Like this morning it seemed everyone in Carshalton urgently needed the services of the doctor, considering my surgery has over 10 gps 3 nurses and 2 physios there never seems to be a quiet time, but Monday's and Friday's are the worst. Its like you never go to the A and E dept on a Friday or Saturday night unless its life or death literally because the place seems to be an extension of the local nightclub with various levels of intoxicated injuries. I know personally I have put up with the pain of a broken wrist more than once to time my visit so I avoid those times, not because I am the worse for wear, but more because I am in pain and thus on a low patience threshold. On more than one occasion I have physically left nail marks in a chair up there in an attempt to keep my patience, when faced with the level of stupidity and arrogance of some so called patients. This isn't a moan about the NHS, on the contrary its a moan about the people who abuse it.

I have had many friends over the years who work in the system, including members of my own family and they all say the same thing, they wouldn't do the job if they didn't want to help people, because the pay,hours and unfortunately the treatment they receive isn't worth the effort. I know its an age old moan, but lets tip it on the head. There are a lot of people like myself who have genuine chronic illnesses which when properly managed don't usually clutter up the health resources more than routine check ups. However when something happens to change the balance we are subject to needing weekly if not more doctors appointments, plus extra trips to specialists and in my case physio. This isn't an extreme case, most GP's want to monitor the constant progress or deterioration of the illness so they can amend the treatment given. Add these people to the standard amount of people who have those natural accidents and illnesses that we all suffer and that is enough to keep every doctor and nurse in the country busy. Especially as we have high population numbers at both the young and old ends of the spectrum. So how on earth do we expect these over worked staff to do their job properly when they become inundated with idiots who don't know when to stop drinking or worse. Sure I have had my moments of vodka induced stupidity but it has never landed me in hospital. and thinking back none of my friends landed there either. Whats more  I know none of us would have dared to carry on in the fashion I have been unfortunately witness to. Whats worse to hear if the reaction I have had on arrival at both my GPs and Physios, never do I want to hear the words "at last someone who is really ill". Yet I have heard that many times going back as far as to when I was 18. So this isn't a new problem, but has building up for the last 30 years, and it seems to be getting worse as the medical profession no long have the right to tell the time wasters to go get a life.

I am not having a go just for myself, but how many of us have had a wait on our allotted appointment time, in fact I am so resigned to it, I can all but guarantee that tomorrow my GP will be running at least 10 Min's late and my physio probably 20mins. Not because they are lousy time keepers, but because they have an allotted 10 Min's to get a patient in their room find out what the real reason to see them is and diagnosis. Sounds simple but for the fact in some cases including myself it can take 2+ minutes to get from the waiting room to consultation room, in some peoples cases even longer. Then the poor patient has to explain whats wrong, in my case no problem but some people are nervous of this discussion, then the doctor may have to do some form of exam, decide the right course of treatment and explain it to the patient. That's a big ask in a short space of time. All it takes is one patient with something really bad or slightly less oblivious and bang goes all the timing. So what the last thing needed is some paranoid patient taking up the valuable appointments through something stupid or self inflicted. There was a simple rule installed in me at a young age, if the chemist can treat it you don't need the doctors, and if in doubt phone rather than clog up the system, Unfortunately for me like today the doctor thinks my side affects are more worthy of his attention than I initially thought and my presence is ordered tomorrow.

So back to my little challenges, today I am on a go slow till tomorrow, but whats a day when I am sure there is some one else feeling a whole lot worse than me also waiting for tomorrow to come. Yes is annoying, but if everything goes our way there would be nothing left to challenge us. Most of all I take my hat off to those who give their lives  to putting people like me back together again, without them I wouldn't be here today.

Those endless nights

For some of you this is going to sound crazy, for others you will understand perfectly, those nights that no matter what you do, what you take or even what you think, sleep just wont come. I am notorious for seeing the dawn in. It doesn't matter whether I am working or not. There have been many days I have gone into work having not slept since the day before. I can think of at least three job interviews I have attended sleep deprived for at least 40 hours.

I would love to blame this on my chronic conditions, because then I would have a cause and be able to treat it. But unfortunately I have been like it since a child, baby even. I never slept till late and normally I would have driven my poor mother to distraction refusing to go to sleep. There was one cure, my granddad playing his lute, despite all my resistance it would win. It usually also sent every one else to sleep as well. Its 14 years since he past and I miss him daily, and feel guilty I never paid attention to how he played the lute, thats still in its case as he left it.

It's funny really looking back the things as we get older. Things that mean the most to us, and the things we regret. In my case I wonder how much more I could have learnt, and why didn't I listen more. Neither of these things would take away the pain, well if 14 years haven't I doubt anything will, but I am still left with those regrets. Saying that there are memories I wouldn't change for the world.

Like the final music competition I entered, the one I wasn't meant to . I already had lost my hearing in my left ear and I was so ill I couldn't hear a thing I played. I mearly went there to accompany my granddad who was very frail by then with what was misdiagnosed as dementia, but was really sticky blood syndrome causing mini strokes Anyway I am getting side tracked, I showed up at the venue instrument in boot just to join in with the communal playing at the end, and no piece really prepared. I will quickly explain this is the world banjos mandolins and guitars, slight less formal than standard orchestral instruments but just as competitive. We get into the venture to find out I have been entered regardless the moment I walked in the door to do a solo on my banjolin . I had in the past held both this cup for musicianship and the alternative cup for technical difficulty that's held at another gathering. So streaming with a cold leaving me virtually deaf I have to get someone else to tune my instrument whilst I drive through my file of music hoping that one piece I was currently studying on the violin would convert. Then I did the craziest thing, I left Granddad in the audience and went into a hallway with only my mother and just did one run through then non stop scales and arpeggios to get my fingers moving. Nothing more, I was resigned to the fact this would be a disaster as I couldn't hear my own tuning, and was reliant on the frets as a guideline. When called I entered the hall piece of Schubert and banjolin in hand really wishing I could be in the audience rather than the final competitor in what I had heard was a cut throat competition. I started to play and even with my hearing being at its lowest I realised the hall and gone totally silent apart from my playing after the first 16 bars. I  just carried on playing knowing that the only times that silence had happened before was when a person was either spectacularly wonderful  or equally as bad. I actually never really heard the applause if I am honest what I saw and will always remember is the look on my granddads face, its said it all. I don't know to this day how I sounded, excepted from everyone elses feed back and the fact I won the cup, to be perfectly honest it didn't matter that look was worth so much more. All day he held that cup and I think it meant more to him than any other award or competition I ever won. It means even more to me because within 8 weeks he died, but he died knowing his grand daughter was a national champion in an instrument he taught me.

These memories always come back to me on these nights of insomnia, along with the mixture of bitter sweetness they carry. Saying that if I didn't have nights like this would I remember the little things that put the days pain into perspective. I achieved the impossible then when it meant so much to some one else, maybe that's what I need to do again. The joke in this house is I have more lives than my cats, literally cheating death 3 times that we remember and beating the odds more times than that. May be I am very lucky, or as other put it very stubborn, I personally think its because I am not done yet. I don't know what I am meant to do or finish yet, but all I know is every cheat came with a cost of responsibility, mainly to those around me who haven't given up even on my lowest of days. My lack of sleep is just another hiccup in my working, I haven't finished thinking and learning yet. I would rather suffer the endless nights because it means I see the dawn of the next day and what ever that holds.

When its too hot for the duvet on a duvet day

How I wished I listened more in chemistry, instead of working out different ways to blow up the lab. I would have learnt more about cause and effect, a fundamental principle that dictates our lives as well as every action in the universe. Yesterday was my cause today is the affect, and in principle should be a duvet day.

I say should be resting under my duvet filling my mind with what ever information I can find on free view. However if you live anywhere in the south London area today you will know the wonderful summer we had yesterday has turned into an tropical climate, humid, heavy hot and damp. Come lunch time we even had the token thunder storm, which gave us humans a 30min breather from the humidity and my cats a quick bath of which they weren't best pleased. However within a hour the humidity is back as is the heat, so badly that just sitting on my bed i am sweltering, like every one else. This is nothing more than an inconvenience to the average person, for any one with CRPS it is hellish. For the dampness eats into your joints like a persistent wood pecker looking for its lunch, and is just as gentle. Fair enough I knew I would pay for yesterdays success, but this added pain is the killer. The effort involved in going to make a drink is the equivalent to that of a high end runner. and by the time I have made a drink I need another to replace the fluids I lost making the original one.

So I am going to spend the afternoon with the company of the Sunday papers and a dog who would prefer to be in several inches of snow than this. This is what brings me back to the cause and effect question. I have already glanced through the rags and can tell there is little in there I can call really news, but a lot of so called celebrities living their lives in the media. One weeks they are whining and dining the attention, the next they are screaming invasion of privacy, and whats worse it becomes news. Don't get me wrong I am not referring to the phone hacking cases, or anything like that, I am talking about these z Lister's or whatever they are who seem to fill the glossy magazines with every detail of their lives in case we may be interested with what they had for dinner etc. They create their own cause and then complain about the effect. In our house we have found the best home for this mundane drivel.. the bottom of the kitty litter tray, where it becomes recycled in a far more worth fashion.

The reason it bothers me is more the fact I spend an hour cutting through all the rubbish to find the news, like yesterday,  in a tiny corner of a tabloids paper there was two paragraphs on a traveller girl who had not just achieved high grade a levels, but also secured herself a place at Oxford university. Now that kind of news could help remove peoples misconstructions on her social group in society, yet it was filed in the unimportant trivia on the side of a page, playing second best to some films stars break out or something just as unnecessary

Cause and effect seems to dominate our lives, what we choose to read, how we choose to eat, even our own mental attitude to any given situation. I, personally choose to write this blog in the hope that the effects and experiences in my live can give someone else some benefit. The other reason is, if I let the pain of my condition stop me from doing anything whether it be walk  or write I am giving up on hope of some form of recovery.

But for now I have to accept that for the good days I have to pay with a bad day and that's what today is. Its just how bad so I allow it to be, do I just curl up in a heap and whimper? or do I do something vaguely constructive?.Personally I choose the latter, granted from the constraints of my beloved sofa bed, but today we wont bother with the duvet. Duvet days serve a purpose but they aren't meant to double as a turkish bath.

Lightly toasted ..meduim rare

So it seems we are having another attempt at a British summer. Having had a few days of damp, dank weather we are now impersonating the Costa brava. I am not about to complain about it, but it does not help with the pain control. As those who have taken any medication codeine or morphine based will tell you, your system is already fighting dehydration. So add in a sudden heat wave and you run the risk of suffering a bad case of dehydration.

With that in mind, most people in my situation would be sensible and take in consideration the medication factor mixed with the pain, and probably stay at home read a good book in the garden and take it easy. Yea right! this is me folks and I never make easy. Being vegetarian my need for fresh fruit and vegetables is more than the average person. Unfortunately, I don't about the rest of you but I find supermarket produce bland and doesn't keep fresh for more than a couple of days. This leaves us with few options as local greengrocers seem to be as scarce as honest banks. So as a family we either support local farm shops or make the trek to Croydon to a place called Surrey St. Basically a permanent market that is predominately fruit and vegs

This week we decided to make the most of the seasons bounty and head to Croydon. Normally this a job under taken by mum and I, being the cooks in the family we know what we need and so on. However a 70 year old parent and heatwaves don't mix at all. So the job of pack horse fell to husband dearest. Against every ones better judgement I was determined to go. So shopping list written that resembled an a to z of plant produce, we set off husband pulling trolley unsure what fate beheld him. The bus ride should have forwarded us we were heading into an oven as the sweat literally poured off me. Granted we had to stop several times on the walk to the bus stop and the walk towards the market.Half way up there it became obvious to us both one trolley and the shopping list weren't going to fit, fortunately there was a shop at hand to assist with this problem and armed with a trolley each we progressed through the list. Surrey Street is a a busy narrow street with more people than pavement, but its friendly and reminds me of the markets Dickens used to write about. Some how we managed to fill our trolleys with assorted fruit vegetable and salad and I didn't get pushed or knocked once. Husband also got to see an English market at its best, with the local community working together.

Once we replaced our fluid intake we made the decision to walk further to get us to the bus that would deliver us closer to home. For some reason I took on the challenge to pull one trolley and was doing really well despite the intense heat and pain in my back. That was until we tried to pass people at another bus stop. It was there I meet the most selfish and inconsiderate bunch of people ever. Not only did they occupy the entire pavement, they made no attempt to pause or give a little forcing me and trolley to topple on to the tram track. This did very little for either the shopping or my back. Did I get a sorry or offer to help, like hell I did. Now you would think, especially if you know the area, I would be talking about a group of hooded youths with their waist bands round their knees, but no this was a group of middle class mid life people who had an attitude of they were the boss.

Once Husband dearest had scraped me and trolley of shopping off the tram line before I got hit by a tram, we continued back to the bus garage, however the damage was done. Everything I had achieved in the last few days is now in danger of being ruined. Not to mention husband was left pulling two trolleys and trying to stop his wife from ending up in a crumpled heap/ All in heat more suited to the south of France rather than south London.

Needless to say we eventually made it home, having been slowly roasted in the bus, and having to phone Mum to come rescue me from my trolley at the home bus stop. I am now in a lot of pain but proud of my achievement, A week ago I couldn't face the walk to the corner shop or even the post
box at the end of road. I know tomorrow I will pay for this grand adventure, especially as my beloved phoenix decided the photo albums looked better being fired at my back rather than on the shelf they live on.

What it did show me was that the only way certain members of the general public will not give an allowance for any one with out a blatant label on them. Granted I did lose my temper a little and yell "what do  I have to do wear a t shirt saying I am particularly deaf with a spinal condition" at the party that pushed me off the pavement. But in retrospect it does raise the question what will it take to make people aware of others needs. How many of us pre judge a person by just their physical appearance. I mean have you crossed the road because the person coming towards you looks like he is wearing more make up than a drag queen, and its sporting enough metal to justify a trip to the scrap metal yard. How many of us have tutted at a person in the disabled seat who doesn't appear to have a thing wrong with them. Most of us have done something, I know have made a flash judgement and been proved wrong. But I have also been the victim of people challenge my worthiness to claim a disabled seat on the bus. On more than one occasion i have been forced out of that seat and in some cases up to the higher deck, which is deadly for me now a days. The only reason it didn't happen today was the size and height of my husband deterred the normal barrage. In fact it has got so bad it is perfectly normal for me to return from a trip using public transport in tears either from pain or abuse. It has now become a running joke in my family that they are going to get a t shirt made for me reading

"I have hearing loss, and a fracture in my spine...whats your excuse!"

Unfortunately this joke is actually becoming dangerously close to necessity. For some reason when ever its said though, it leaves me thinking back to the Jews in Nazi Germany having to wear the star of David. Now I am not comparing myself to them, but I am thinking the prejudice still remains. It has simply changed form and become more accepted in its hidden form,

I will calm down tomorrow, and like the sun burnt face and shoulders I have acquired , the soreness of the day will fade, to nothing but mild irritation. For now though I am already thinking about how today's events will cause me to slow up tomorrow, and suddenly that good book in the shade seems such a good idea. So now I am going to hunt on line for a literary treat and resist the heat of tomorrow. I only do light toasting and I am already resembling a medium rare steak.

That little ray of sunlight

Today is the daylight to yesterdays cloud coverage, which is a good thing. Granted it started way too early for my body's liking but the amount achieved compensates for that. OK the jobs done are highly mundane by most peoples standards, but for me its a great leap forward.

It started with the baby of the family lil Cheyenne's trip to the vets. 8 weeks ago he took on a car and for some reason the car won. Anyway this lil cat beat the odds thanks to a kind driver who actually took responsibility for her actions, and took Cheyenne straight to vets who were able to treat him for the shock and injuries. When we got him home he had little movement in his right leg and no light response on his right eye. He really was a sorry little thing and the vet told us we had to face the fact he may be left half blind, with brain injury and could even need his right leg amputated. Fortunately God and Cheyenne had other thoughts on the matter. With in 24 hours 97% of his eyesight returned and after 8 weeks the vet agrees with me about 70% of the leg mobility is restored and he can use it wash and jump. Granted it will never be perfect and he still needs a little pain killer to ease it a couple of times a week, but he passed with flying colours. That's said it took 3 humans and a 1 dog to get the toad into the basket to get him there and then there was small matter of extracting him off the air con unit in the vets surgery when the vet asked him to walk round the room. I care to point out the air con unit was 7+ft off the floor.

So that was the start of the day, we have also had the issue of mums car MOT today and to be honest I seriously thought it was going to be beyond financial viability as it is as old in car years as its owner. But again we were plesantly surprised , apart from a battery that had been er battered and a brake that had seen better days the car lives and we aren't wincing too badly.

Then in my wisdom I voluntereed to do the shopping and get the cash out for the car. Armed with a husband come chauffeur we set off.. Now after all my complaining about people not giving the less abled any leway, what happens? Idiot husband had a brain freeze about how far and how fast I can move trying to park the car miles away from the shop. So after a little tantrum I got delievered to a closer location and started my errans. It was whilst in the bank I met a gentleman who was in a slightly worse state than me with his back. Being the nice gent he was he not only gave me hope with his own story.. yes we got chatting, hwe also said he looks forward to seeing me at the clinics as he believes will meet at some of them. To me that was the best part of the day, being able to share experiences and getting a posistive response from a stranger. For some reason even the very tiring trip round the shops felt a little easier and I no longer felt like I am the only person in this state.

This leads me to the joys of todays post I finally have a date for pain management clinic granted its a whole month away but I have finally got in  and there is that glimmer of hope infront of me. Now I just have to get to through the next 31 days and maybe someone can ease this torture. I am not asking for a miricle and the pain to just go away but if they can dull it to a livable level I will be very thankful. That will aloow me to join the world of employment and so on, something I sorely miss.

So today I am basking in that rare thing sunlight in the british summer, hope everyone else is.

Duvet day part two

OK unusual for me to post so frequently but I have had thinking time. And to those that know me that is a dangerous thing.

What I have been pondering is the continual inequality in this country. I said in my previous post how I feel alienated because my conditions aren't blatantly obvious to those around me. But having read the small print of my para Olympic tickets and just heard the problems on the news I could scream. Here is the probably I have to take one or another tablet every 2-3 hours, for me to take these into the Olympic venue I am advised to get a doctors note to ensure I am OK to take them in. So one minor hiccup. But it also states that you can not take excessive amounts of food and no drink into the venue. In principle fine, until I heard about the queues at these places. So what is going to happen is I am going to have to aim to get to the venue at least an hour before I need to to join a queue to guarantee I have enough to drink for the afternoon to save endless queueing so I can take the right medication at the right time. I also have to make sure I have the right amount of snacks to match the number of tablets so I don't have to queue up for fish and chips  at £8.50 a pop of which I can only eat the chips maybe as I am also a strict vegetarian due to allergy not choice. Or worse Mac Donald's where I can only manage a happy meal minus the meat patty.

You could say well it's your choice to go which it is, but this is a problem not just at this one event.but at all the major events if I want to go to something at the O2 or Earls Court it is exactly the same. Same if I want to go to the states to see the in-laws except there I have further issues of which medication is legally allowed in to the country. Oh and in America you try and find vegetarian food that's not deep fried or covered in artificial cheese.

Is this society's way of trying to curtail less able or sicker people into submission, to except we are 2nd rate and don't belong at these events. If so its about time we kicked back at this nanny state and told them exactly where to put this idea. I, personally am a highly educated, elequant and intelligent human being, who loves music, theatre and motor sport amongst other things and I have no intention of being told I cant do something because health and safety disapproves of my medication routine  etc. Personally I cant stand the amount of holidays given to politicians or the way certain people can get priority over the majority to achieve tickets to events, but at the end of the day I cant do anything about that. What I can do is change the way people perceive me and treat people like me.

Duvet days... dangerous for the world but great for my brain