Dumbstruck

The world and it’s dog, think of MS as a condition that affects muscles, both in pain but mainly weakness. They see us as future cripples, the people sat in wheelchairs, rarely seen without a carer and simply waiting for the day to pass. After all what value are we to the world, the cripples who can no longer work. Some look at us with pity, but most don’t look at us at all. We are invisible, long before we disappear completely by becoming housebound. I can say that, because if someone had asked me when I was 20, that is probably roughly what I would have said. Just as I saw spina bifida as people wearing calipers until my son was born with it and then died 12 days later. None of us really know what any chronic condition or disability is like until it somehow touches us. Even now, I couldn’t tell you if my Jeffery felt pain or felt anything at all, I just had to take the word of the doctors, that he was at peace in his misshaped body.

MS isn’t just weak muscles and pain, it is so much more. All you need to do is read my blog from its start to today, and you will see that there isn’t a single part of me that it doesn’t affect. Although, I do have to add that what you would read is my version of PRMS, one of five forms that MS took until recently, now there are only four. I discovered yesterday while reading on line that PRMS no longer exists, we have been absorbed into PPMS, although how I’m not sure. I’ve read the description often, and I quite honestly don’t fit. Yet, who am I to argue with the great and the good of the medical world, I am, after all, only the person who lives with it. In fact, I’ve lived with it now for over 30 years, but if you were diagnosed with RRMS, SPMS, PPMS or even benign MS tomorrow, I couldn’t tell you what lies ahead, because I haven’t lived your life. It’s not just MS that this is true of, whatever the condition, all of us would find our own quirks, symptoms, and difficulties, that’s just life though, as none of us live the same one in the same body.

At times people have asked me what is the worst thing about the conditions that I have. Yes, it is plural, I like the majority of people with a chronic condition have a collection of them. Why they travel in gangs, I can’t tell you the medical reasons, but I’d make a guess that once our bodies are weak, we are susceptible to other developing. As for the worst part of it all, well, it depends on what day and at what time you ask me. In the mornings, I am most likely to say that it’s the pain and by the evening the fatigue, catch me in the middle of a brain fog, and I’d most likely look at you stupidly and say very little of any sense. Chronic illness is a minefield filled with monsters, just waiting to take over from each other when the others have got fed up of playing with you. But if you have one, you already know this.

Today, though, my physical monsters are just treading water, the pain levels are set at normal and my fatigue just slightly higher, today, it’s the monster in my brain that is having the most fun. I have started and not finished a dozen things already, and my poor browser, has been straining under the number of web pages that I have opened, most I have little idea why. Concentration is little more than a distant memory. I have even stopped this post more times than you would believe, returning and having to read my earlier entries, and then sitting here trying to work out where I thought it was going. Even now, I’m not sure. Mind you, that’s nothing that unusual. For some reason, today seemed like the perfect day to change broadband suppliers. I had been thinking about it for a while, but out of the blue, I found myself actually doing it. So hopefully, as of the middle of next month, I will be flying on high-speed fiber and miles from the company who couldn’t even answer their phone without getting me angry and leaving me in tears. Yes, I will double check all that I’ve done when my own brain has returned.

I know that I am being rather flippant today, that is quite often the result of living in a muddle, as if you don’t take it on the light side, you’d drive yourself mad, if, I’m not already. Seriously, though, unless you are living with a brain that has been affected by something like MS, you don’t have a clue just how frustrating and depressing the whole thing is. I know that I am still managing to type out word after word and that I will appear to many as not having the slightest problem, but take my word for it, my brain is a mess. All of those wonderful tricks or the gizmo’s that are supposed to aid me in my everyday life, to me, are totally useless. It doesn’t matter what it is, my brain finds a way of turning it into an ignorable annoyance, something that doesn’t apply to me, or at least not at the moment it is trying desperately to put me back on track. It doesn’t matter if it’s a post-it note, a list, an alarm or even something huge in the middle of my computer screen, I can ignore it and totally forget ever even seeing it. Life with my brain is now one long smooth line, uninterrupted by all those annoying little things, like eating, washing or taking my meds. Well, it would be, if I hadn’t long ago started using Adams brain to fill in what I missed and of course my carers now keep me straight as well. Yet, I’m lucid and intelligent, well I think I was once, and might be occasionally now, as long as I don’t engage my brain, it will trip me up in seconds, if I let it and even when I don’t.

There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this amazing way they know, of getting things done and never forgetting again. I learned long ago that I wasn’t only invisible, I was also mute as what I have said, was clearly unheard. Until you have spent an entire day, with my brain, in control of your life, you won’t understand, any more than you can understand the effects that pain has me, outside of the pain itself. When your brain is being eaten alive by lesions, nothing is as simple as it was just a week ago, far less a year ago. Unlike my body that now sits in a wheelchair, there is nothing visible that supports my brain. I can’t show it to you, all I can do is tell you, but then, of course, I forgot, I’m mute.

Please read my blog from 2 years ago today – 01/08/2014 – A spark of truth

I am waiting for the phone to ring, Teressa and John are due to come and see us today the first time we have seen each other since Christmas. To be far I doubt I will get a call before 12, after all, they are on holiday and as she is staying with her brother, I know last night will have included more alcohol than is …..

10 thoughts on “Dumbstruck

  1. You are so very eloquent in your writing. No extra words, just exactly what is needed to paint your picture.

    I was so taken by how things change, and am again, happy to know you are not alone.

    Thank you for sharing your journey. We all have much to learn.

    Liked by 1 person

  2. Sometimes I find people are so insensitive about anything they dont really understand..chronic pain is very hard to live with..I get colds flu..or anything else going around.in my experience others seem to think we are not human..but I get strength knowing I can cope..dont know if they could.. On 2 Aug 2016 10:49 am, “Two Rooms Plus Utilities” wrote:

    > livinginalimitedword posted: “The world and it’s dog, think of MS as a > condition that affects muscles, both in pain but mainly weakness. They see > us as future cripples, the people sat in wheelchairs, rarely seen without a > carer and simply waiting for the day to pass. After all what va” >

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    • I’m not convinced that it is totally being insensitive, as I said until we are confronted with anything, we don’t understand, in face we often can’t even imagine. Maturity helps, as I find, not surprisingly, the younger the person, the more they don’t see our reality. Your right though that there is one thing we know for sure, we can cope, but can they? 🙂

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  3. “There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this ” Oh this paragraph touched me so. As a person who has tried to get her Mother and father to hear and understand just the physical side of my illness (not the pain). My mom had me crying by the time they rudely hung up on me last night. I have given them text book printouts on my illness and they refuse to read it. I think out of fear or maybe not accepting life can be hard on their children. Or at least I hope that is what it is and not selfishness.

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    • Families can be the people who make our lives impossible, or they can be the ones who make us live. I have both in my life, well not so much in any longer. I had to take the hard decision to cut all ties with my mother and brother. Despite being housebound for 9 years, they still made me feel guilty for not going to see them. They haven’t been here once in the past 12 years, and they only because I my brother bought a car he had to pick up from Glasgow.

      On the other hand, I have the most wonderful husband and daughter, I live for them, not because they live for me, but because they live with me. Not literally my daughter, she’s in London, but she could be sat beside me. We have to decide for ourselves what makes our life good and what makes it bad. It took me years, but now I live for those who care about me, not those who pull me apart.

      Think carefully about your life, your mother and father may just be hurting because they wanted so much more for you and you don’t have it. All parents have aspirations for us and when we don’t meet them, they feel like failures. But don’t let them make your health worse, be strong with them, for yourself.

      Take care (((Hugs)))

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  4. I’ve seen my mother on her worst days and she says the pain is nothing compared to the brain fog. She endures so much pain, to the point where she can’t walk for several days, and yet it is the days when simple tasks like making a grocery list or remembering a phone number is almost impossible, that leaves her in tears. I appreciate your post.

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    • The things that MS does to our brains, are hard for others to comprehend. I know how hard it is to watch others struggle, but if you can show her understanding, without taking over from her, you will help her far more than you might think. I say this, because from my side, there is nothing worse than others trying to be my brain. I’m sure she already ask when she, herself feels she needs it. As I said in my post, there are tasks that I now use my husbands brain for, but only because I asked. Our independence and self worth are so important. 🙂

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