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…..

11 thoughts on “Two weeks on: Without permission

  1. SORRY IF I’M MISSING THE POINT(IT’S BEEN A HORRIFIC WEEK); BUT MAYBE,YOU AND ADAM CAN COME UP WITH A SOLUTION, SO THAT YOU DON’T HAVE TO CLOSE THE BATHROOM DOOR. PRIVACY, I KNOW IS VERY IMPORTANT. JUST A DUMB DUMB THING THAT I NOW DO.MY DOOR IS OPEN MOST OF THE TIME.MY PRIDE LEFT THRU THE OPEN DOOR, BUT I HAD NO CHOICE.

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  2. Have you heard anything more about your assessment of your needs? An electric chair would be such an advantage for you as it would take away the dreadful fatigue of propelling a hand wheelchair, electric chairs can turn on a sixpence, also knuckles wouldn’t get knocked as hands are on top of arm rests. You must push the NHS for one, you need one now. Xx

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    • The MS nurse was here last Tuesday, he said my chances are slim as fatigue doesn’t normally count towards one. The fact I can move my chair at all, is usually enough to not get on, but he is putting in for an assessment for me. It all down to that, so I just have to wait. πŸ™‚

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  3. I’ve never used a wheelchair myself, but I do have some family members (including one very close one) who have needed a wheelchair for years. I’m sorry that it sounds as though an electric chair may not be something you can get for a while because they really can make such a difference to the amount of effort required to get around and they are so controllable.

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  4. Do you have enough space in your bathroom to switch out your solid door for swinging doors so you can push in and out in either direction? (My dad was a carpenter and installed this as a solution for my Grandfather when he was reduced to using a wheelchair).

    Or, is there enough space in the door frame to remove the standard door and install a pocket door? Wishing you well as you adjust to your new circumstances.

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    • I live in a Victorian Sandstone flat, this means basically due to the construction of the building that nothing can be changed at all. There is no space to swing a mouse in our bathroom, the shower unit is right behind the door and the wall is right up against the door frame on the other side. The house was built pre-1890 from what we know and experience tell us it’s delicate. Drill into any wall and it crumbles, requiring replastering. Every builder we have had in, has sucked air through their teeth as soon as they arrive on the street, they know what this style of house is like.

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