Two weeks on: Without permission

At times being in a wheelchair, is just like sitting in a shopping trolley, you know what direction you are pointing it, but it’s not so certain where you will land up. This house requires delicate tiny motions that let you edge past each obstacle and doorway, but the amazing Victorian uneven floors and the array of places those front wheels can get caught, can leave you anywhere but where you intended. There isn’t a single journey that is anywhere close to a straight line, and even when you can see one, somehow you land up having to go in circles. I spend more time lining up the chair in the hope that I touch nothing other than the floor than I do travelling over it. It should be simple, sit there in the chair and point it where you want to go. So OK, yes, there are two 45 degree angles to deal with, but how is it that even before I get there, I have to turn another 180 one, just so that I don’t bounce off the settee and the dresser. I have discovered something new about wheelchairs that despite spending nearly 4 years in this very one outside of the house, that I never knew existed, it has an incredibly warped sense of humour. I have lost count of how many times I have been heading for the loo at speed, only to make it to the bathroom, stand up to transfer and it has grabbed hold on my dressing gown, stopping me midway. Yes, I do learn, but it changes which bit, where and how every time.

Don’t get me wrong, switching from trying to walk and being sat in my rediscovered friend is such a huge change to my life, and I wouldn’t go back now. Apart from my face, which clearly has nothing to do with my chair, this is the best week I have had in a long while. I have been incredibly tired some days, but all apart from one, it was a good tired. That knawing and relentless fatigue in my legs has been reduced, and although all the other pains are still there, somehow it is a cleaner pain, less thick, sludgy and heavy one. Granted, a lot of that fatigue has transferred itself into my arms, but the overall change to my legs alone makes it worth it. I don’t want to talk too soon, but as the days are passing my arms do seem to be slowly getting used to it. As is the norm with my body, it is my left arm that is complaining the worst. My upper arm is almost permanently in pain, but it was even before the chair came out of the cupboard. It is a little like it has a timer attached and is willing to play the game and supply the engine power until around 5 pm, then it has had enough. Without a doubt, the best thing has to be just knowing that every movement isn’t going to put me in danger of being flat on my face and marooned. Trust me, that is a wonderful feeling and makes up for the earlier feelings of having lost a huge battle.

There is so much that we didn’t plan properly for. Tasks that didn’t enter either of our heads when it came to how I would manage on four wheels rather than two legs. What we did have sorted in advance has worked really well, but things like making my Psyllium pancakes, needs to be totally rewritten in every way, other than the pancake recipe that is. You don’t realise just how many small silly trips you make around your kitchen whilst preparing anything to eat until you find yourself seeing the whole thing from a new perspective. I found the need to be on my feet, more than once, as no matter how well thought out, crossing the kitchen with a pint of hot/warm milk and melted butter, can’t be done in a chair. Having done it all on Wednesday, I now know without a doubt that this is going to be a task that has to be shared with Adam and not attempted alone. Adam, as always has offered to do it all by himself, but to me that isn’t the answer. It took me 3 months to get the recipe right and although I trust Adam to actually cook them, something he has done part of on the last two occasions, actually putting it all together, not yet. Scales and instructions, just wouldn’t cut it. One of the things I learnt over years of baking is that the feel of a mix tells you far more than the recipe ever could and that feel has to be learnt.

There is one thing that nearly two weeks on that I just don’t seem to be getting to grips with, is how best to open a door that is closed behind me. Our bathroom is really an L-shaped passageway. There isn’t the slightest chance of turning round in it, so it has to be forward in, backward out. Grabbing the door handle means you are almost up against the door and with only one other hand to deal with my shopping trolly. You have to move forwards somehow single handed if you’re going to open that door at all, whilst dealing with the issue of the door catching as it opens onto those large wheels sticking out from behind you. Plus thanks to the placement of the shower, towel rail and the sink unit, I am also caught in the tightest space the entire house supplies, and one where the front wheels catch over and over again. I am developing a true love-hate relationship with our bathroom and I have always loved it. Without a doubt, every home is going to have one of those spots, and even the most experienced wheelchair user is going to have issues. You can go and walk around your house right now and you won’t spot them, or appreciate just how difficult they are. I am getting better at it, but I am never going to love it or even see it as easy. What worries me, is how as things progress, will I be able to manage it at all.

So far, I have to say that I am delighted that I bit the bullet and said goodbye to pride. That pride that was screaming inside me “Are you really going to let this thing beat you?”. I know without a doubt that that attitude has done a huge amount in keeping me going through out my health issues. I also know the battle that I went through mentally both before and after I announced that I was going to move my life onto wheels. It is one of those arguments that will rip you apart if you let it, it has to be approached with an open mind and you have to be prepared for it. That’s why I took so long between announcing the change and actually doing it. The preparation I spoke about wasn’t just the physical items I needed to buy so that I could live this way, a lot of it was the psychological preparations. I think that in all it has taken me two or three months of working on my mind, as giving up your legs is a major thing to do. I had to do it on my terms, not by going down the more normal route of calling in the OT’s. I don’t get why people do that. There isn’t one of us out there that doesn’t have a brain, so why do some need another brain to tell them what they already know. The only reason I can come up with is, is that it takes the responsibility and gives them permission to do it, and an OT to blame for all of it. I’m a grown up, I don’t need anyone to blame. As long as you really think about what is happening and you prepare physically and mentally, we can still do anything we put our minds to. Even open bathroom doors.

Mentally, I can’t change the fact that by the end of each day I am now exhausted. My chair hasn’t removed that if anything in an odd way it has made it worse. No matter how tired I was at the end of the day, I could always drag my knackered body around the house and into bed. Now that same drained body has to somehow find the strength to move it and that chair, no matter how lightweight, around that same house, which has now become an obstacle course. I have found myself sitting slumped in my chair in the living room, with my arms just hanging either side and having to force myself into actually moving. Trust me, it’s a daunting prospect, especially as it is the only time of day that I have to enter ever single room in the house. A wheelchair isn’t always an improvement, it can be the very thing that adds to your destruction. I have always got into my bed at the end of a day, glad to be lying down at last and knowing that sleep isn’t far away. Now I get into bed with my entire body glowing with pain and exhaustion. I lie there feeling it all slowly leaving me, just as I feel my conscious self shutting down for the day.

Please read my blog from 2 years ago today – 26/09/2013 – Gone but still there

There has always been a temptation in my life to simply do things that shock others and show with pure strength and humour just who the inside person is. Throughout my younger years and again once my divorce was through I gave into it freely when ever the…..

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…….