I have said it before and I don’t apologise for saying it again, if you have a chronic illness or are housebound, start your own blog now! I was thinking about yesterday’s post and these last hand full of weeks really would have had me feeling incredibly low if it wasn’t for the mystical power that writing about it seems to have when it comes to retaining my sanity. I honestly wish I had started this years and years ago, as when it comes to coming to terms with what is happening to you, well there is no more instant, available and painless way of getting your head round it than writing. Over the years I have attended joined and left support groups both online and ones I have had to attend, I have even years ago attended counselling and not one of them has helped me so much to get not just my health but my past in order or helped me to be content with what is happening in my life. I know that not everyone will be comfortable about writing the full truth about their lives in every detail knowing that others will read it, but it doesn’t have to be a blog, I know that it also works when that writing is private and no one but you ever reads it.
When I married my first husband, I kept an extensive diary, not one of those expensive bound things, just an A4 sized hardback writing a book well not one of them, there was at least 2 for every year. In them not only did I put down my thoughts and the things that were happening at the time, but I also added in every birthday card, good photo and even ticket stubs and locks of hair when I changed my colour. They were a total record of my life and later my children’s. Because it was a complete record of their early years, when we split I left them with him so that Teressa would have that record of her life and fuller picture of her mum when I wasn’t there daily for her. When he remarried he burned them all, without even asking if I might want them back, mind you I know that there was so much in there that would have painted such a bad picture of our lives together, that I think they were burned so Teressa would never read them. I remember though that they kept me going through some of the worst things that ever happened to me in my life, but I stopped the day I became single and I felt no need to write at all until now. Trust me, my life was no bed of roses from the day I left until I became too ill to leave my now home, but it was a million times better than when I was married to him. When Adam and I were first married, I tried then to write a diary again, but I set out to write for very different reasons, I wanted to write about how good my life was and what was making it good, although I could and did write for a while, I didn’t feel the same compulsion to write and it became something I found myself not doing, finding excuses that I had other things to do and that I was just too busy. The truth was, life was too good and I didn’t need to write, without that I couldn’t. Something about life being difficult draws me to writing and both then and now, but this time it has had an amazing effect in making life more than just bearable, it has made it good. Even if you don’t believe that it will work for you, it has to be worth a try, as when your mind isn’t in torture, dealing with everything that is happening to your body becomes so much easier and so does everything else in life as well.
I mentioned a few weeks ago that I had decided to let my fingernails grow, it was sparked by the fact I had let by accident one of my thumbnails to grow just a little and I was finding it easier to get my tablets out of those stupid blister packs. They are now quite long, not as long as I have had them in the past but at a length where I am actually more clicking than touching when I use the keyboard. I made another discovery in the last week or so and that is I have lost a lot more feeling all over the place than I thought I had. I had a feeling that I had lost a lot of feeling, but short of sitting with a pin always to hand so I can check it, I really wasn’t sure. I knew that my left hand had never totally recovered from the time when it totally died a few years ago, I have never been able to make a proper fist since and by pressing with a finger the skin areas of my palm and fingers, I didn’t think it felt right. Now that I have nails I now know without a doubt that almost all of my left hand is numbed slightly in some areas and badly in others. There are even a few small areas that are totally dead, no feeling at all when it comes to sharp, I feel the pressure but nothing else. Over the time that they have been growing I have also found loads of areas on my face and head that are also numbed from the outside, not just feeling numb from the inside. Last night when I went to bed, I decided to start testing different areas of my body and I was shocked to find there were dead area’s all over the place, most are quite small and in places that they don’t even matter, but they are there, along with loads of areas where again I feel the pressure but not the sharpness. Twisting myself into silly positions isn’t something I can do anymore, but when I got up this morning I tested my feet and lower legs and found just the same. I have to say I am a little shocked by the total area of me that has now numbed, but something else I found a little odd is something I knew already from my hands. I hadn’t realised just how precise our nerves are, as I have one finger that is dead a the tip on one side, fading into normal sensation at the base, whiles the other side of the finger is just numb all the way down. I had always been under the impression that pretty much the whole finger would have similar sensation throughout, not so varied in such a small areas. There is one thing that I have made up my mind about thanks to this, I am always going to keep my nails long from now on, it is the only way of having an instant tester with me whenever I think I need it.
I have lived for years now with lost sensation, most of the time they don’t really cause me huge issues, more annoying than anything else because I don’t cook any longer, then I might have a real problem. Nerves are really odd things, as although I now know that I have less sensation throughout my body than I thought, MS has this amazing trick, it might be numb, but it can still cause pain in exactly the same place. I have often thought that it might be nice if they could just block nerve sensations and stop all the maddening pain, but I know that would create other issues, oddly pain is a good thing as it also shows that the nerves are still there, telling lies but connected. I doubt there will ever be an answer to all the problems that MS causes, at least not until they can work out how to give us totally new nervous systems, repairing the Myelin isn’t enough on its own, a perfect Myelin sheath over a dead or broken nerve doesn’t change anything.
Please read my blog from 2 years ago today – 21/09/12 – Fire Hazard
Yesterday was the perfect example of the type of things that are made more difficult because of chronic conditions. I did my best to move around as it did ease the pain in my back but it is one of the constant arguments that go on in my life, ease one thing and aggravate another. This morning….