I have four more days until normality returns. Adam has been on holiday for five days so far, and that means I have had five mornings, doing what I normally do, but with the background sound of snoring. God, can that man snore. I suppose that he had to have a flaw, well, no one is really totally perfect. All this week he has spent most of his time pushing me around in my wheelchair, that is, when he is awake. My right arm is still driving me up the wall, and for good measure, my left is now joining in, I suspect that I have hurt it trying to protect the other. I realised yesterday, that it isn’t all down to my MS, I suspect that I have torn the tendon in my elbow. Doctor Google diagnosed it for me, of course, as seeing a real doctor seems so petty over a sore arm, especially when I would first have to try and convince one to come to the house. I followed all the tests, apart from the x-ray, and tendonitis fits perfectly. I know that my wheelchair is playing a huge part, but I suspect that an even larger part of the damage has been done while using my grab rails. I have become rather reliant on them for getting out of my wheelchair, and to the point where I can turn around a put myself onto the loo. I know that maneuver sounds easy, and it would be, if, I didn’t have to along the way, remove all my lower garments. I frequently find myself being jerked all over the place as I fight to remove them, while not falling over. Elegance left a long time ago.
When your body works perfectly, you take so much for granted. We do things with total easy and without even realising how complex everything really is. We stand up, sit down, walk, fetch and carry, and not once do we even think about any of it. Something as simple as making yourself a cup of coffee, has so many tiny complex movements involved, even if we don’t realise it. Every time you do something, even as simple as stirring that coffee in the cup, you aren’t just stirring, you are changing your balance, compensating for the movement that your arm is making. Your body is moving and without good balance, that tiny action can land you on your backside on the floor. My favourite balance thrower is when I look straight down, my body just wants to follow my eye line. No movement, no action is simple. I have to hold onto things, grasp tightly and think about what I am doing. Often it still goes wrong, and there I am, pulling myself back into upright and yanking at all those muscles and tendons, not designed to take my weight. The chance of anyone who is disabled, not injuring themselves at least once a month, is slim, very, very slim. Most of the time it is nothing of note, just occasionally, it’s that bit more serious, a cut, a graze, a burn, or a strain. Get it really wrong and it’s unconscious with concussion, being disabled, is dangerous.
I thought that once I was in my wheelchair, all that the worst of the danger would somehow be gone. Well, it’s logical, isn’t it? I’m no longer on my feet, I’m sat squarely in my chair and safe. The reality is, little has changed, as all the real danger area’s, I find myself still having to stand. All the wheelchair does, is take me from one danger zone to another, incredibly safely. Which is something that I find rather ironic and actually rather funny. Admittedly, since I have been in my chair, there has been nothing worse than the damage to my arms and a collection of mysterious bruise, which appear and disappear with gross regularity. All this is yet another problem that no one ever tells you will be part of your life, once you are seriously chronically ill. Yes, my list of hidden issues is still growing, and I am totally sure that it will just keep doing so.
The reality of our lives will always be, disabled or able-bodied, we are never totally safe from damaging ourselves, but I find it really strange that the more cotton wool that I am wrapped in, the more damage I seem to be doing. I can only conclude one thing and that is that my health is getting worse, even if I’m not really aware of it. I know that it’s a strange way to gauge it, but when you are doing less and less, how else do you gauge these things? Clearly, I can still measure my speech, memory, breathing and so on, but all the other things, well they have been changed by my not knowing how to measure them any longer. I hope that sentence makes sense because reading it back, and trying to put myself in your position, I’m not sure it does. I sit here all day, I sit on the settee all evening, and I lie in my bed all night, where is the activity, the events to gauge anything by, other than the accidents that I have.
For a while now, I have been telling myself that accidents were inevitable when you don’t use your limbs, they are going to become weaker and less able. There has to be a large element of truth in that, but it doesn’t explain all of it. As I said, I don’t have major accidents, just more inability to carry out those everyday things, the things most of us don’t even think about. Life is getting more difficult, more confusing and further and further away from the life I once had, yet there is nothing to see, in some ways, my invisible illness is somehow slowly becoming invisible to me.
Please read my blog from 2 years ago today – 03/09/2014 – Explanation
Two Rooms Plus Utilities 
I had to chuckle at your line : All the wheelchair does, is take me from one danger zone to another, incredibly safely.
It is amazing how you look upon your reality with such grace and humor.
Thinking positive thoughts for you!
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I’m glad I made you laugh, we all need laughter in our lives 😀
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That is true about using your limbs. When I was 10 I was laid up on a special bed for 3 months after spinal surgery. I had to learn to walk again. I used a wheelchair, then a walking frame.
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Many don’t realise just how quickly our muscles become weak and useless. The phrase “use it or lose it”, fits perfectly 🙂
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When I worked in a fittness center I was taught that only one week, one small week is all it takes for our muscles to start and loose half of their strength. One short week. Hope you are as good as you can be my friend!🍷🌻
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Thank you for being an inspiration ! A friend of mine or rather a Jordanian active attorney has MLS as well is writing books endlessly with two fingers, i bet you do the same incredible extraordinary gifted talent ! she contracted MLS from a high fever than the fever dropped making her helpless and unable to function!!! when i read your journal ! it is a wake up call if i even dare to find excuses for myself in life that God granted me ! Thank you
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Stay strong (((Hugs)))
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‘The reality of our lives will always be, disabled or able-bodied, we are never totally safe from damaging ourselves, but I find it really strange that the more cotton wool that I am wrapped in, the more damage I seem to be doing.’
It is such an important reflection. Sometimes the damage we experience comes from our illness, but sometimes it is a result of limitations that come from within us. Lack of self-belief, low self-esteem or no confidence in who we are and what we can achieve. And more we try to protect ourselves from the outside world and other people more damage we are causing to ourselves and sometime other people, too.
When I am reading your blog I get the feeling that you are free in ways that many people are not, which exposes you, but also makes you stronger and you also give so much to others. Thank you for writing and giving people an opportunity to reflect on what matters.
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I try hard to make people think, not so much about me, but life in general by giving them a window into a life they might not be able to imagine. Many I know are like me, struggling with just the same issue as I do, and it always helps to know your not alone. I am glad that you are enjoying what I write and I hope you continue to. 🙂
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You are certainly an inspiration to me, particularly when your problems overlap with mine. Now that I’m living on my own for the first time in twenty years, I’m discovering all sorts of things I can no longer do without help, equipment-wise or human-wise. It’s depressing. By the way, I’m now in a position to buy those decent grab handles! On the same note, have you ever come across raised loo seats that are a reasonable design as well as functional? I’m been laid low by what I’ve found. Grrr. ‘Course, disabled people only need function, don’t we; why should we expect the equipment we need to be aesthetically pleasing.
Grumpy of the Isle of Wight! x
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Glad to hear your getting the grab rails, it’s amazing how holding onto something beautiful, helps to ease the pain.
When we had the bathroom redone six years ago, as I was trying to equip it with items that would make life easier in the future, I discovered a range of toilets that actually have a taller pedestal, so the who thing is raised. It really does make it a difference, and once again, it doesn’t look any different, so it doesn’t looked like something made for the disabled. I guess, though, it’s only something that most would get, if remodelling the entire room.
I am sure that you are finding a lot of problems right now, but it’s amazing just how many ways around a problem there are. It will just take you a little time, but I am sure that you will get there. There are always the odd one that stumps us, like how to disrobe before sitting on the loo, but I’m sure there is an answer to that as well. Stay strong, you will get there, or should I say, we will get there.
Take care (((Hugs)))
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We will get there! In many ways, it’s refreshing starting anew. I have, almost by accident (I bought sight-unseen) chosen the perfect place (apart, perhaps from the spiral staircase!). There are areas I will not have to fix grab rails because there’s something appropriate already there. The loo in the bathroom is right next to one of the radiators and it’s a wonderful, stainless steel curled confection, very satisfying to look at, and perfect to grab on to! I don’t think I can run to higher pedestal loos at this point so I will doubtless end up having to go for the usual. Hey ho. Onwards, upwards! 😀
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I agree, that stairs may be an issue and just remember, radiators get hot. Mind you, it’s not as cold down there as it is in Scotland. I had an issue with the heater in our hall, it’s in the exact spot where I needed a rail, but it would have become really hot sat above it. Now I’m in my chair it doesn’t matter any longer. I know the sort of radiators your talking about and they are really attractive, far better than my storage heaters. No disguising them 😦
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Such a good read as always. I find the same with my wheelchair and even my crutches, sometimes getting my crutch into position to help me does more damage even though the trip from A to B will be safer! It’s a fine balance between moving as much as we can to keep our muscles strong (ish) and stopping getting hurt all the time 😦
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I was sure that I wasn’t alone in discovering this, good to know your out there. Not that your struggling, but that you are out there knowing exactly what I was talking about. 🙂
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I’m sure that it makes a huge difference to be connected to us all over the place 🙂 xxxxx
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I’m especially saving this one! As a pastor and an older woman, sometimes or often your experiences match things I’ve struggled with…those that don’t match now probably will in the future. But it’s so very very helpful in my relationships with my parishioners. I have one younger woman who has gone from athletic teacher, coach and fitness instructor to someone for whom walking to the kitchen to make lunch and bending down to give puppy a biscuit and sitting at the computer a bit is all she can do. This began as infection of lining of heart, but after two years and many top specialists, they don’t know what is happening. You help me relate with her. And with the energetic senior who’s knocked low and needs surgery. And with the 100 year old and his 80 plus year old wife caregiver.
So many of us, and we think we’ve found just the answer with a cane or wheelchair or whatever…until the next thing. I can say faith and trust and love is the answer (as a pastor) but you remind me that change always comes, do we must add flexibility and thankfulness.
And I’m so grateful for you. Thanks.
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I am so glad that my writing has been of help to you and those you care for. In fact, you have pretty much summed up the main reason that I write, because I know there are so many out there, who struggle with all the things I do. We all need to relate to others, and finding people who share our problems, makes us less alone and more able to face what follows. I really appreciate you taking the time to write this, as this morning, I was angry with Adam over something silly, and you reminded me, that the small things really don’t matter. What matters is being part of something so much bigger, those lives that we can make a difference to. So Thank you x
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