Accept or fight

I woke twice last night, not once long enough to make me want to get up, but just long enough to check the time, make myself comfortable before I went to sleep again. Of course, the next question has to be how am I this morning, just exactly the same as I have been for days now, tired, wanting to head back to bed and covered in pain, numbness and pins and needles. I found myself yesterday checking over things, trying to see something, anything new or different, all I found, of course, was the same as I have found every other day that I have gone searching, but I can’t just give up and accept without question what is happening to me.

I know that a lot of people will have thought that by now I would be at a point where I would be ready to just accept, to say this is the way it is and this is the way it will always be, other than getting worse of course, but why would anyone? Don’t get me wrong I fully accept my health and what it has done and will do, but that doesn’t mean I have given up, neither does it mean I am a fighter. You can’t fight autoimmune conditions, they will do whatever the hell they want and they ask no permission to do whatever they think of next. To me a fighter is the person who is paralysed in an accident or by illness, but never gives up trying to walk again, the fighter is the kid who can’t understand the world and why people want them to walk and talk, but are as happy as can be in their own world, building it daily to be their personal heaven without any understanding that it is already there if they look outwards, but they can’t and fight to keep going regardless. I know what is out there and I know without a doubt that pushing myself to walk won’t make me stronger, just weaker. I learned those things by once being a fighter, but what fighting taught me was that at times you just have to accept you are ill and once you do, life gets a whole lot easier, but that doesn’t mean you give up, as life goes on and life needs to be lived.

I may have accepted my health, but that doesn’t mean I accept just whatever it wants to do to me, without understanding it, that is my battle not to fight it, but to understand it. I want to know why for a week could I not feel the three most outer toes on my left foot, yet today they are back, a good thing yes, but it has been replaced by pain in my right foot, same three toes, different foot, so why? I could write paragraph after paragraph, post after post, listing the why’s, what I want to be doing is writing paragraph after paragraph, post after post, listing the answers. I never expect to be the person to crack this illness, but I at least want to be the person who is at total at ease with their health, because I understand my body and what it does or doesn’t do. Why does that sound such a huge ask, one that I doubt I will ever get to answer? Sometimes I wonder if the problem isn’t what I want, but once again they way I was taught to be, this time, the way I was taught to think. We all think in similar but very different ways. I know I try to find the logic in everything, I am inside a highly logical creature, the problem is I am also a caring and creative creature, two things that logic has a problem with, as pure logic can’t explain or use either. Pure logic is cold, calculating and perfect, but not being a Vulcan, I loose the edges of those things, if I could use pure logic, I might by now have the answers I want, but emotions get in the way. Pain is emotional, logic says it is there to teach you something, but when it triggers that emotional side, logic can’t see through it and can’t find the answer as it is confused by tears, tension and stress. Sometimes I think I would be better just giving up looking and try to learn blind acceptance, but no matter how hard I try, that is an alien thought. I wasn’t taught to be compliant to others, but no one ever mentioned compliance to myself, they missed that one out which meant it was to me, so I make life tough for myself, unfortunately, I do it too well.

I suppose we all walk around with questions, I didn’t question so much when I was diagnosed, the time you would think there would be the most questions, I was too busy, too many things to distract me, life was still going on. Now I have all the time in the world to think, to ask the questions, to wonder about the whole damned thing from the very first why, to the last, which I guess for me will appear the second before I die. Acceptance is another of those strange words in English that we use like it is the ultimate word, when in truth there are so many different levels of it, that somehow it lands up describing nothing at all. I accept my illness, I accept what it has done and I accept what it will do in the future, but I still have a why about every single one of those things, but all I can say is I accept.


Please read my blog from 2 years ago today – 16/07/12 – The Zombie Fog 

My MS has delivered me today it’s favorite thing to try and cope today. It is one of those symptoms that varies hugely, ‘Brain Fog’ can be simple thin mist to a ‘pea-souper’ or as I think of it a thick custard and that custard is thick. I am having real problems keeping my brain in one place, I am flitting all over the place and typing is an interesting process, all I can say this thank God for spell check, without it I doubt…..

3 thoughts on “Accept or fight

  1. Hi I just saw a post on twitter and apologise that I haven’t time now to read all your posts but note you live in Scotland and some of your early symptoms are not typical of MS.
    I do hope you have considered the possibility of lyme Disease – not the restricted view of our health authorities but the chronic persistent infection that science is now finding – sadly NHS is way behind the curve on this – with poor tests and little know how.

    I have blogged about the links previously but there are some interesting lectures on my blog right hand column from Tom Grier – Tom is now part of a project looking at MS cases for spirochetal disease – with advanced technology he and Dr MacDonald’s use of Beacon probes will at last be able to show how many patients with MS actually have Lyme Disease. Tom’s lectures talk about historic evidence of spirochetes involved with MS until the advent of steroids which became the favourite way to treat – suppress the immune system – instead of understanding why the immune system is behaving the way it is – treat the symptoms instead of looking at the cause.
    Good luck in finding the cause of your health problems


  2. I have thought about and looked into the possibility or lymes, but with both my brain and my spine covered in lesions, plus a positive lumbar puncture,I don’t see there is any doubt at all as to it being MS. I am not sure what you read that made you think that some of my early symptoms weren’t typical to MS, as my early symptoms where over 30 years ago. To date I have only had three courses of steroids, none at all until 10 years ago, as I refuse to take them unless I just can’t deal with what is happening, but the first round was dramatic, in 48hrs I went from not being able to coordinate my breathing, speech and swallowing to being able to hold a short conversation. My own personal preference has been through out to treat the symptoms, but I have continued to go downwards.

    The treatment that change the course of my illness the most was Chemo, with in two sessions, 6 months apart my life rewound to being able to walk, talk, do my job and be part of the outside world again, to me it was a miracle. The chemo destroyed my immune system for over the 3 years the treatments lasted. I can’t have it again, but I would in a flash.

    I am very aware that some people who have now been diagnosed with lymes also have a diagnosis of MS, having lymes doesn’t mean they don’t have MS and time will be the eventual proof. For me I have my proof, but I thank you for your thoughts and I hope you stay well in the future.


  3. Good to hear you have done some research but the research is extensive and emerging – the lesions found in MS are indistinguishable from those found in Lyme – I thought I’d read that some of your earlier symptoms were pain and some fibro but I could be mistaken as that was some hours ago.
    Yes Chemo would help if it kills of infections and or interferes with your immune response.

    Although you say you prefer to treat symptoms – finding that cause could change your downward progress so good luck to you in finding it.


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