A new independence

It looks as though luck is on my side as far as the future adventure on wheels in the flat. I have received a letter from the MS community nurse who visits me once a year and they are on their way here on the 21st. Which gives 7 days to find out just how easy or difficult life is in my wheelchair. The timing couldn’t be better as they are exactly the people who if I am having problems, can go straight to the right people so that I will be assessed for a more suitable chair or whatever aid it is that I need. Today is the day when I am going to test out the bag and bottles I bought and hopefully make it my first day on wheels. I didn’t want to start when I woke up, that seemed like too much of a shock to the system. For some reason, it felt like a much better idea for me to get breakfast and my first round of meds out of the way, then take my last steps. It still feels as though there are a huge number of things that I do that I will need to stand up for. We have switched things around, bought gadgets and prepared as far as we can so that I remain seated as much as possible. My chair will take away those distances, those stupid fast turns we all do at corners and doorways, those turns that throw your balance into a spin and luck more than judgment get us through. Where I can’t wheel and I have no choice other than to push myself onto my feet, well the spaces are small and the dangers far lower.

It still feels wrong that I have two legs that on a good day do their job, but on a bad day, just let me down, literally. Legs that I am no longer giving the option to even show their ability, I am restricting myself to my chair at a point when I can still stand. I just can’t take the dangers of falling and the fatigue in my legs that I have been living with for the last few months. Or the total horror of finding my muscles have yet died again under me and I know longer even seem to own a second leg. That is the point that I have wished a thousand times that I was sat in my wheelchair. So here I am putting myself into a wheelchair and still able to stand, something I never thought that I would do. It feels both totally wrong and the best move I have made in a long time at exactly the same second. It doesn’t matter how pig headed you are or how sure you are about yourself, our health always has the last word. What happened to that person that used to happily hang around in a lighting or sound rig without any of the expected safety gear? How did I land up scared of just walking through my own home? I don’t suppose scared is really the right word. If I could get back up without spending ages on the floor trying to get to somewhere I can get to my feet again, I wouldn’t be here. It isn’t the falling that scares me, it’s the being stuck on the floor with no way up that really scares the hell out of me. I am passed the point of finding it funny or wanting to lie there for hours waiting for Adam to come home again.

Last night, Adam and I spent some time with the chair and the bag/tray that I bought and worked out the best way of attaching it to the chair so that it both lay on my lap and was easy to hang over the back of my chair. It took a couple of different attempts to find the one that will work best for me. I want the bag to be always available and never left in the wrong room when it is next needed in another. What we have settled on now means that the same strap allows it to hang on the back of my chair, but also secures it firmly on my lap, so that it can’t slide off spilling it’s contents everywhere. I also had to get Adam to raise the foot rests as of course I don’t ever wear shoes in the house so it’s setting left my knees sloping rather than forming a flat lap in the first place. Everything was set, I thought that we had all bases covered and I went to bed with the plan for this morning clear and simply laid out. It was after I had used my inhalers that I sat in my chair and set off to clean my teeth and put my dishes in the dishwasher. That bit went fine, but I hadn’t considered the teeth bit at all, I can’t reach the toothpaste without standing up. If I can’t reach that, I can’t reach either half the other things in the medicine cabinet in the bathroom that I use almost daily. It appears we need a bit more reorganization, for life to be as easy as I would like it to be. I expect in the next few hours I will find more, but that is all part of switching systems on anything, there are always those small items that you just don’t think of. Today is going to be a day of tests and list making as to what needs more thought and most importantly, getting those angles and turns polished so that I am moving around my home, not into it.

If there is one good thing about sitting down when in motion, it is the fact that it means that Adam has one less thing to worry about. I know that he leaves here every single day fearing that when he gets home again, or phones to check on me, that I either won’t answer or he will find me on the floor. To be honest, it is the floor bit, it’s the damage that I might have done to myself on the way down there. He has been fighting with me for a long time about the fact that the house is full of surfaces I could fall onto that are covered in crystal. He has always been in agreement with the OT’s, that the crystal should go. I have always been of the mindset that I bought it because it’s beautiful and if I ever needed beauty, I need it now. They are my smile points and to me worth a million times more than the possibility that has never happened, that I had been sliced open or even cut by it as I crashed into it. Somehow, despite the odd fall that has sent me careering towards it, I have never made direct contact, or to my relief even damaged any of it. I know that all Adam wants is to keep me safe and to make my life as easy as possible. Even last night when I was negotiating the living room door, despite the fact that I have said over and over that I don’t want anything moved by a centimeter more than need be, he couldn’t help himself. I hadn’t even got to the point where I have to turn a sharp 30 degrees to get me past the nest of tables, the edge of the door and the main settee, get it wrong and I would hit the coffee table next and the words were coming out of his mouth” If I just…”, I cut him off right there and said “You will just nothing!”

Independence is about the details of life. I used to get that so wrong, I saw it I suppose, especially in the 80’s and 90’s as being a woman who didn’t need a partner to financially exist and equally I didn’t need a partner to walk with me into a bar or restaurant, or to do anything for me. I could do everything from earning a living, paying my bills, DIY, cooking, cleaning, making clothes, gardening and anything else you can name, that was independence. I suppose for most it still is, but it also has a much deeper and important meaning that we forget as we grow up. The independence of life. We forget it, as it somehow doesn’t seem possible that we will ever need someone again to feed us, help us walk and to do simple personal tasks for us. None of us is willing to accept that we will need basic care, right down to the level of whipping our backsides for us ever again. We claimed our independence from our mothers and fathers and once done we totally forget what it took to get us there. It is that independence, the forgotten one, that is our true independence of life, everything else are just modern inventions. An animal couldn’t give a damb about who pays the rent, independence for them is the true one, the one that says they can look after themselves. We forget all about learning to walk, or how it felt to be sat on a potty that someone else emptied for us. They are totally forgettable things because we don’t have to live that way, we’re grown and we are independent. Then something like chronic illness appears, or even old age and we start to lose that hard learned true independence. Suddenly it doesn’t matter if you, your partner or even the government pays for things, it doesn’t matter what talents we do or don’t have, or if we can still enjoy them or not. What matters is what we can do when it comes to just living.

My wheels are my replacement to my legs. They are my way of holding onto just a bit of that independence and just like learning to walk or probably better to say like learning to dance, I have to learn those fine movements without changing the physical world to make it easier. Let anyone assist and it is giving up on my independence, a detail of my basic life. Even just sitting in my chair was a loss of independence, I may not have lost it to a person, but I have lost it to a replacement and even that is hard. I guess that it’s why I didn’t want to wake up and just sit in my chair there and then, it felt a too brutal way of saying goodbye to part of my life and hello to another. The seperation of night and day are extreme enough on their own without adding such a strack milestone to them.

I haven’t as yet heard from the Doctor about the photo’s I sent to him. I actually landed up phoning the surgery to be sure that it was received later on in the afternoon. Having had my shower with the phone sitting by the sink in case it should ring, I decided it was time to check that it had at least been received. I know it is just the way life works these days, but personally, I find it really annoying not being sure if an email has reached its destination or not. I have in recent years had far too many fail, thanks to servers having strict exemptions set up against some companies who supply free email accounts. I do have an account that came with our broadband, but I totally hate their website and the way their email works, so I set up a couple of other ones that meet my needs far better. I had expected that my GP would phone me yesterday, but later in the evening I had a thought that he might just have sent the picture on to someone who is better qualified as to it being a problem mole or just one doing something totally unimportant. I suppose that I will find out one or the other in the next few days. I just so hate waiting.

Please read my blog from 2 years ago – 15/09/2013 – It should be simple

I suspect we all have a narrative to our lives, either that or I am totally insane as I know there is this voice in my head always working away telling me what I need to do, how to do it and when, it chatters away just the same way as it chatters to you right here. Every night when I am waiting to fall asleep I lie there on…….

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