Unbelievably, the first day in my chair has left me with bruises and pain almost everywhere. Well, if I am being honest, I wasn’t in the chair when I got the bruise, that happened when I fell over it. I did expect to land up with painful arms and upper chest muscles, that was something I remember from when the chair first arrived in my life. What I didn’t expect and probably should have, was that it was going to upset and trigger spasms in my chest. More proof if it were needed, that there is nothing in this life that doesn’t have a price that has to be paid for it. My legs felt so much better yesterday, just being allowed to relax and not be taxed by the constant weight of moving me around, made it feel at first like a dream. As the day went on and I was on my third or the fourth spin around the flat and there was the first spasm in my upper intercostal muscles. I was just lining my chair up so that I could park it up until next needed, when bang, there was that unmistakable pain. My upper chest muscles don’t usually get involved unless there are no others left to summon into the fray. They are like this final line of normality, determined to stand for peace, but drawn into the war once it reaches them. But there they were screaming away, alone. I suppose I should have expected it, but we often miss the most obvious things and they haven’t totally shut up since. By bed time, I was once more reaching for my Morphine boosters as I was desperate for sleep and not convinced that they or the rest of my aching muscle would let me rest at all.
I had every problem that I expected to have and it wasn’t until this morning that I finally managed a trip consisting of visiting two rooms and back to the living room, without hitting anything! To be fair yesterday it was more touching or scraping past, but today I didn’t even touch anything with my chair at all. I know it is going to take time for me to manage that one consistently, but I am sure I will get there. Like most homes, this place isn’t designed for wheelchairs. The carpets and rugs that I so love make it all far more difficult as the chair doesn’t want to turn on them. Every rug has a varied height of lip that has to be climbed, and every room has at least one, but it is the woollen pile of the carpet that is worst. It is like a glue grasping hold of the wheels making the effort required to move at all a hundred times harder. The tray/bag works perfectly, bumps or not, but I do need a small box or another tray so that I can transfer my collection of items from the chair to my desk, or back again. One thing I had never thought about at all was the telephone. There isn’t a single one in the house that I can reach once I am sat down, so I have to remember to take the one from the desk with me where ever I go. Even though I can reach every light switch, they aren’t always where I need them for lighting my travels through the house, nor are the light sources. I have realised that I need something like a headlight as I need to see inches in front of me, while the rest of me, blokes out whatever light there is. There are so many little things, things that you would never think of until you are actually trying to do those everyday tasks.
Adam is being even more of a darling than normal. He is running around fetching and carrying things so that I don’t have to keep going back and forward more than needed. It is actually quite sweet and funny at the same time. He has always wanted to do things for me, it has been me who has told him to sit still and that I can manage for myself, but having the chair is changing my viewpoint and letting him take on the role that I forbid him too. Right now getting around takes so much effort and concentration, that once I have reached my destination, I had no desire to go back for the things I forgot to take with me. I found myself not just letting him do things for me, but asking him for his help. In an odd way, it is almost as though yesterday evening was the first night of my being really disabled. He fetched me drinks, including my gin and tonic, something I normally don’t let him anywhere near, my tablets and even the glasses that I brought to the settee then dropped no the floor, because I forgot they were on my lap. Whatever was needed, he was there.
For a long time, he has said that he felt as though he never really did anything for me. To me the fact that he does all the housework, all the washing, clean sheets the bed and deals with all my mail and phone calls, plus sorts out all my meds, isn’t nothing. Clearly though, from here on in, he is going to have to do far more as well. I think he is very aware of how difficult I am finding all this and not only on the physical level. Even when I woke during the night to go to the loo, he was suddenly there, making sure I was OK and not needing his help. I am sure that both of us will settle into how all this is going to work given a little time. That eventually, my upper body will not only get used to the work but that I will know instinctively how to get through every door without touching anything, even in total darkness. Once Adam can see that I am really managing, then he too will settle and just let me get on with it. In some ways, I actually think this might be good for both of us. I will feel safe and he will not only have the peace of mind of my safety, but also he will have the element of caring for me that has been missing for him, and has at times, actually made him feel guilty for in his mind, for not doing.
It is so hard to get the balance right for both ourselves and those who care for us. Over the time since I was diagnosed, Adams involvement has slowly increased. I know now that he wanted to be involved in all of it from the beginning, it was me that kept him out of it unless there was no other option. I thought, wrongly, that I had to show him that I could deal with anything, that that was the way that he would then not worry. In fact, what I was doing was making him feel useless. He wanted to care, to show that he cared and to take care of me, not as a cripple but as his wife. The pair of us were on different pages and not talking about it to even try and bring us together. It took years, not until my health started to demand his help did I let him fully into my health. Yes, he knew about the pain, the tiredness and so on, but I wasn’t going to show any more than I could help, and what he saw was what his knowledge was based on. It wasn’t until I was housebound that I totally let him in, let him see just how difficult things were and to attend hospital appointment with me, I know now, that was wrong. I was fiercely independent and he is all-encompassing teddy bear who exists to care and love and be the perfect companion, carer and life partner. My wheelchair is and will always restrict my independence, but it has opened the door to letting Adam even further into my life. It has created a new balance and new world for both of us.
I nearly forget those bruises. Yes, I really did fall over my wheelchair. Ironically, it is the first fall I have had for about a week and the first time I have hurt myself for at least a month. It was plain and simple stupidity and my eyesight. My right eye is almost blind in the middle, so looking directly ahead, I miss much. The problem was quite simple, I forgot what programme I wanted to watch next. I had brought up the menu, but couldn’t make out which line the programme was on from here. Normally, I would stand up and walk towards the TV until I could see. I totally forgot the wheelchair was there. With it being black and the room being dark, well I walked straight into it, bashing my shins off the foot rest. I fell forwards onto the chair, so I was otherwise fine, but my poor shins took a real bashing. There is an answer that I nearly sorted out several months ago, but just didn’t bother. All I need to do is buy an HDMI cable and connect my PC to the TV, that way I would be able to bring the screen up right in front of me on this screen. Cheap, simple and probably worth the little effort required to make me safe from any more bruisings.
Please read my post from 2 years ago – 16/09/2013 – Time to say it
I was warned that when I switched from my Oxycontin to MST that MST could cause some strange and to some disturbing dreams, well I am glad to report I haven’t found them disturbing, just a little odd, especially as I rarely in the past have ever recalled my dreams the next day. I think I had been on them……
I’M NOT WELL; BUT YOU ARE FINDING A. THAT MAKES ME HAPPY. YOU DIDN’T HAVE TO MOVE YOUR PRECIOUS CRYSTAL, THAT YOU LOVE SO MUCH.YOU DESERVE SOME HAPPY TIMES WITH YOUR CARING TEDDY.
Sorry to hear things are tough for you just now. Take it easy and take care of yourself. Spend today doing everything you can to relax as you are needed at your best for your daughter. You are going through a tough time just now and if your ill, well who will be the Mum she know, needs and loves. 🙂
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