Not unique just deceived

They say the MS is unique to every sufferer, but from very early on in my writings I have had people continually saying to me that I am writing their story, that it felt as though I was describing the things they couldn’t put in to words, not just for MS but for many other conditions. I think that is the biggest thing I have learned, I am not as alone as I once thought I was. Spend your life amongst people who are able bodied and fit, it is very easy to start feeling as though you are some kind of freak or that no one can ever understand because we have this unique illness, designed by our bodies, for our bodies. If I could get doctors and writers to do one thing I would ask them to stop telling new sufferers that they can’t tell them what will happen as no two people are the same, and therefore tell us nothing at all. I knew they couldn’t give me a calendar with milestones for each symptoms on the date they would happen, but I wanted something, some idea even if it wasn’t totally clear as to what I and they could expect in time. There is now one fact that is clear to me, my illness isn’t unique, bespoke, yes, but not unique. I may not feel something in an identical way to the next, but we do have the same symptom, how we experience it is down to us. I could make the same comment in regard to the common cold, but my headache won’t be identical to yours, as pain is bespoke to the person, but no one ever says that a cold is a unique condition.

If you head home from seeing a doctor with this impression that you are some how on your own, it makes adjusting so much harder. I was 10yrs plus from diagnosis before I started to write and I found more and more people who are identically unique to me. An MS hug is still an MS hug, regardless if you feel it as low as your pelvis or as high as your neck, it still exists, I didn’t know that when I had my first one, I thought I was dieing as no one told me this Hug thing even existed. No one told me a limb could die and come back, or of any symptom that I didn’t have at the point of diagnosis, I was under the oh so wrong impression that I had the full array of symptoms that I would ever have, and all that would happen was they would get worse.

So I want to say it right here and right now, no illness is unique, there is someone out there who is going through exactly what you are right now, and here is the other strange bit, many of them won’t even have the same condition as you. I often wonder if it might not be more helpful to a patient if they were yes told what condition they have, but for true support and understanding that throwing that label away is probably the best thing you can do. If you have brain fog, it doesn’t matter if it is caused by MS, Fibor or Parkinson’s, we all have brain fog and we all get the same symptoms with slight twists, but the same. Every symptom I have, I have found someone else with, some had the label or Lupus other Lymes and many with conditions I had never heard of before, but we were all going through the same thing. Chronic illness regardless of which flavour you are talking about, throws up the same problems, the same fears and all to often the same symptoms, may be it is the umbrella of chronic illness, that we should all gather and there supply the support and knowledge that our doctors are all to reluctant to discuss. Many who know me from twitter will know that I have already moved away from saying I have MS as much as I used to, well now you know the reason. If all those support groups and charities out there now set up to help each title were to pool their knowledge and resources, I can’t help think that they too would be able to do so much more. All of us pulling together on all the things that we share and we have individually found solutions or assistance, seem to me to make far more sense, than us all saying continually, we are unique, no one understands. Well we do understand more than many might like to think.

An MS balance?

So let me think, not the lead to the most exciting blog you might think, well the only way to find out is to read on. I went on my memory trail earlier today, it’s something I do from time to time, it’s a great exercise for me and I expect for anyone else who has a slowly fading memory. I have a fear that the day will come when I won’t be able to find those memories, that they will be lost to me for ever. That is part of the reason I write so much and pour out details of my life that many would rather forget about.

There are loads of things in my home that to the casual observer would appear just to be a large collection of ornaments, the type of things you would find in any home. Many I know think my home is cluttered and if I am being fare it might be, but my clutter has a purpose. I know where everything is and yes I do mean everything, with my eyes shut I can find any single one of them. For a long time I didn’t even realise what I was doing, I told myself and anyone else that I bought so many things to display in my home because I liked them. Not totally a lie. I do love crystal, Thomas Webb, Georgian pattern if anyone is interested and yes I have getting close to a complete glass collection, for now it has stopped growing but I hope for not too long. I digress. The trail has two purposes one to check on locations the other is quite different, some things are here not to just look pretty but they have stories behind them and memories I have installed in them.

When I fist realised that I was going at some stage be housebound I started arranging things so that I will always hopefully be able to use to pull those memories back to the surface. I get extremely agitated when they are moved by cleaning but when I can’t remember all that goes with them I sit and looking at them or holding them until I do remember. I know that people with Parkinson’s are encouraged to put together a memory book or box, I have considered it but it doesn’t fit with the way I am. If I put something in a box, then that box has to be out of site and unfortunately ‘out of sight out of mind’ is becoming more than just a saying.

Multiple Sclerosis slowly causes what they call lesions on the brain, understandably as the brain is such a delicate thing, these lesions cause damage. That damage is clearly different for each person as there are no set areas where the lesions grow. For me clearly I have problems with memory, I know I have damaged to my left frontal lobe and part of this is an impairment to my emotions. This is to me one of the embarrassing things MS has done to me, I cry, I cry at all the wrong times. Anything that causes a sharp change in my mood or I find embarrassing or difficult to talk about I cry. Now dealing with a builder who has botched something is not the right time to cry but I would and did. I can’t imagine what will set me off in the future but I have visions of someone just saying hallo and I cry.

This morning when I was trailing round my living room I started to cry, I was simply holding a little silver cat and remembering my Siamese cat, who by the way died nearly 20 years ago, I cried. I now have a vision of me in the future sitting in permanent tear because everything I see causes some sort of emotion. They say god takes away with one hand and gives with the other, so have I found the reason why I am loosing my sight.

MS or Parkinson? Check List

A few days ago I was talking to a friend of mine who has Parkinson and some how we started talking about our symptoms only to find that we shared a large number of them. We both have the memory of a fish, both have mobility issues, we both have twitches and tremors that we can’t control, speech problems, incontinence and pain, we both have one side affect worse than the other, but the opposite ones. Yes there are differences as well, she can’t sleep and I can’t stay awake. So much the same but in different quantities and different importance to us. That was the thing I noticed the most and it set me think, I have to admire doctors who sort out and piece together the jigsaw of symptoms they are presented with. It was easy for me over the years to be angry with them, as they ran tests, asked questions and either found nothing or clearly thought I was nuts.

When you search the web and look at the symptoms that both of us have, it really would be easy to pick out the wrong one. Probably because each person puts a higher emphasis on the symptom that upsets them the most. For me it was the fatigue and the pain, followed by my memory, my dexterity and balance, they weren’t the only symptoms but the ones that I found hardest to cope with. Switch them around and it could easily be something else. Once they have sorted out the puzzle and given the illness the correct name, it is then really easy to go down the list of symptoms and tick each one off, then wonder why it took them so long to get there.

I once had sat talking to a nurse one day when I was having my mitoxantrone, which is a form of chemotherapy, she asked my about the process of reaching diagnosis. When I told her that it looked as though I had my first attack was nearly 20 years ago and that it was only when it turned progressive that I at finally got a diagnosis, she apologised on behalf of the NHS, she thought it was unacceptable. Well now I want to apologise to all the doctors who I cursed and swore at under my breath, for nearly that whole 20 years. Doctors I salute you. I wouldn’t want your jobs for anything.