Taking the rough with the smooth

There is no other way to put it, today is a bad day or as its known in this house a duvet day. I had plans of things to do but in reality they aren't going to happen except the deflea animals that will happen come hell or high water.

I am not saying this a miserable depressing post, but I thought it best to do the explanation early in the blog, just wasn't planning on it being quite this early but ah well that's life. My back condition is erratic to say the least  Tuesday I could walk around and after an hour I looked almost normal, but today I can barely put my foot to the ground with out my hip or lower spine sending such pain through the muscles I am soon a crumpled heap on the floor or worse locked in spasm mid step. Yes this is extreme for a back condition, but this is were the CRPS comes forward and raises it ugly head.

CRPS is hard to explain unless you live with it, however today I will attempt to explain as I am really feeling it today. Pain is always relative to a person, hence I never understand when the medical profession asking you to rate the pain between 1-10. This is because one persons 3 is another persons 8 depending on how high their pain tolerance is. Personally I have been told in the past with my ear condition and even with my back I have had a high pain tolerance. When I broke both my wrists at the same time I would have said my pain level was about a 2 hence I managed to go around for two weeks with out realising I had broke them both. Since I have had CRPS pain is a constant in my life. The constant nagging pain in my back is nothing new I have always been able to block that out, but now I am constantly aware of it. But even that is livable. What is the hard part is the points in the day where there an acute pain in back that is so sharp and intense that the CRPS goes into over drive and instead of the pain being in one place it is everywhere at such a level you can not pin point the actual problem. When this happens in my case the whole back spasms and is so sensitive no one can touch it with out me screaming.

Basically what CRPS does is similar to spilling tea over a mother board of computer, it short circuits the pain in the nervous system. So one pain can trigger pain from any and everywhere. By pain I don't mean the reach for the paracetamol and everything is calm pain, I mean sharp shooting agonising pain that can cripple you. Yes to a degree you can grit your teeth and work through it, but that is a option only bearable for maybe a day and leaves a person totally drained. Sometimes drugs like codeine or in my case tramadol may work to dull the pain to a reasonable level, but bad attacks often require multiple drugs to ease the body into a calm state. I hasten to add that none of leaves a suffer pain free, but it dulls and relaxes the body to bearable level. In my case I am on tramadol, amitriptyline, gabapentine and standard pain relief like paracetamol on a daily routine. But on a day like this it will take something like diazepam tonight to force the body to totally relax so I can at least sleep through the pain,

OK that's the explanation now for the day. Because it is so restricted days like today have all plans re scheduled to make it work able. I am lucky, both mum and hubby have now realised it is not a case of don't want to, but more a case of physically unable to. Today it has taken me 10 Min's to go an make a cup of tea because physically standing and walking is such a strain that by the end of it I am beaded with sweat. Some jobs have been re listed for tomorrow, others I have done on the phone and hubby will then take the relevant bits to people as necessary. It is days like this I appreciate my animals as they seem to sense when there are problems and the majority of them will sympathise with me, probably to get extra cuddles. Of course a couple of them push their luck but that's the joy of animals, they are independent beings who at times cant be told. As I write my dog is keeping guard of me watching my every move. I always wonder how much he knows and understands, but something tells me that if i ever completely collapse he would make sure some one in the house knows about it.

Over the last few weeks I have been lucky bad days just meant I got to see the Olympics on TV and probably watched more sport in those days than ever in my life. In the these weeks between that and the para Olympics I am finding it hard to occupy my mind. I am a keen reader and to a degree writer although that is hard unless I type straight into the PC. Hence this blog, because the biggest soul destroyer is boredom. Ask any person who suffers from long time illness and they will tell  you the worse thing is being bored and frustrated and what they can't do. This is the reason why I you will hear me talk about daily targets and long term targets, I refuse to let my brain turn to mush. I have already planned which new camera I wish to buy, and such like. Its like I already know what to ask people for as a 40th birthday present, and what I want to do for my god daughter Christmas present , prevented only by the lack of money so that means the main goal is to find a way of making money from my bed a legal way. The trouble with society is it isn't fixed up to accommodate the less able in their midst to work within their capacity. If you are very disabled or in an obvious way less advantaged, but if your disability is hidden or not blatantly obvious people don't care or accommodate you. Unfortunately for me people cant see deafness or a fracture in the spine unless I am having duvet day, so they don't understand the sick days so refuse to employ me. Hence my need to find a job where I can work even on a duvet day. So if any one has any ideas let me know, for the rest of the day I will be researching.

Duvet days.. they have their purpose

Finding the light at the end of a tunnel (Living with chronic illness)

I am really new to this so bare with me please. I want to write the reality of living not with one but three chronic illness's in and real but non depressive way.

So to start I will give you a brief summary, and I mean brief. My name is Sharon, or Roni if you know me cyberly (mainly cos I hate any other abbreviations of my name unless you have known me for years) I am on a fast track to 40 years of age something we can all celebrate later cyberly. I have had two chronic illness's since I was 18 a back injury from a badly constructed chair that fractured a vertebrae in my spine and Mastoiditus which is a progressive infection that eats through the bones in your ear ruining your hearing and if untreated kills you from septicaemia as it infects the blood surrounding your brain. In the last year due my clumsiness I broke my wrist for the 5th time in 10 years and due to incorrect plastering I have also gained CRPS stage one as my 3rd chronic illness. I have other minor conditions as you hear over the blogs but please excuse the dyslexia in advance.

Up to recently none of these conditions have done nothing too serious to my life but increase my sick leave and I have lived and worked as any other person in the community, if any thing I have lived harder and partied harder than most as I had more to prove. I lost my career in music due to hearing loss so I changed career, but i am still keen on the performing arts of any form. I am also a car nut as you will hear later and move heaven and earth to get to the events I want to go to.

I am a lucky bunny as I have a great set of friends who help me achieve a lot of my dreams and support me when the world comes crashing down around me, and but for them I would be a very miserable human being. To them I owe a lot of thanks. A few years ago I discovered the world of twitter whilst I was recovering from swine flu, since then I gained even more friends and so my life improved. 

The thing with chronic illness is alot of the time you look and act normally so when it hits hard you crash and burn and it often comes as a shock to those around you and at the moment I am living though a major crash. My spinal injury has decided to celebrate my 40th early by completely relapsing to such an existent it is worse than the original break. This is leaving me in great pain and finding it almost impossible to walk on some days. That said I decided to take it head on despite the fact I am facing an uncertain future with it. So over the next few weeks I am off to the paraolympics to watch the horse riding. Sounds easy yes but seeing as it look me 30 mins to walk a 5 min walk yesterday this a big a challenge where failure is not a option Some how I will make to Greenwich  by 12.30 and I will sit and watch a fantastic sport performed by people worse off than me. I am also just imformed in September I am off to a motor stunt show thanks to a friend who has never given up on me even when I have slowed her up cos I can barely walk at events.

This is what I hope to achieve through my blog, a diary of living with these illnesses whilst still trying to have a near normal life, hopefully the highs will balance out the lows. For every dusk there is a dawn and thats how I look at life. I am not saying I am happy 24/7 because I am not and doubt any one is really is but I want to show there is hope and future with these illnesses and there is no shame in saying yes I am ill... so what.

INTRO

If I say I am near 40 basket case it would be an understatement, how I have even managed it this far is both a marvel of medical science and a sheer fluke. I am twice the age I should be and now heading deeply into the highway of the world of cyber.

So here goes I am about to break the final virginity and start a blog, of life, love and illness. There will be more as well but that's the catchy tag line, well the best one I can think of at 2am in the morning.

Anyway the summary of the last 40 years can't be writen in a few pages but as tag lines I would go with musician, performer, writer, daughter, wife, victim and sufferer. Not as macabre as it may sound but plenty of highs and lows both in the past and the future. The present can never be defined as a high or low till it becomes something you can compair it to, ie history. I am not a glass half empty person so much as always looking for the next bottle to fill it. I have survived this far not on optomism as much as forward planning and sheer bloody mindedness.

Even on the eve of one life threatening operation it was the surgeon and I on the steps smoking, and working out the real chances of the experimental operation suceeding. He got the whole truth when I came round from the operation screaming I would remove his balls for the pain I was in. Needless to say I never saw him till the final day in hospital for fear of his manhood. It was a hell of a gamble they took on me and I wasn't going down with out a fight. Between us we won the battle, if we will ever win the war, probably not in my life time as it will always plague me, but my view is I am alive, had I been born 5 years earlier I wouldn't have made it.

On that thought I will sign off for today to ponder the meaning of life and not its not 42. Not year anyway let me get to 40 1st.