From first step to none

I am still trying to get my head around what I did yesterday afternoon. I went to the hall cupboard and brought out my wheelchair. I haven’t even sat in it for years, as I have never even tried to use it in the house. I had dismissed as not only not needed and just far too difficult to manoeuvre around. As long as my legs could hold me and as long as I could manage by catching hold of furniture and walls, well why would I want to make life more complicated. When I first got it I was stunned at the way it opened up the world for me and it has been fixed in my mind that it would be this amazing contraption that could take me anywhere. Within weeks, my dream had been destroyed by reality. A reality of cambered pavements, badly parked cars, unrequired steps and surfaces that were anything but flat, brought my world back down in size rapidly. Most of all, it allowed me to work for several years longer than I would have been able too. A call centre is a big building and I was required to be here, there and everywhere, that was until I fixed everything to work for a bank of PC’s which allowed me to be anywhere, even from home. The impact of being housebound was tempered by just doing that, sitting here working daily, life continued as normal while my wheelchair sat in the cupboard, doing nothing but getting in Adams way.

I don’t know exactly what inspired me to go and fetch it today, or to sit in it to discover just how much of our home was really assessable, but that was exactly what I did. First I headed to the kitchen, it looked easy enough but it was a lot tighter than I expected. I had to tweak my approach over and over and getting back out was no easier. Our flat is Victorian and defiantly not designed for the possibility of someone in a manual wheelchair and I have made it even less so. Right at the doorway of our kitchen is a free standing unit that holds a million and one things, things that can’t just be thrown out to allow me to move around. But I checked closely and it could move back about 2 centimetres, not much I know, but it would make the difference between difficult and possible with care. Of course, all of the counters are far too high for me and all of the cupboard that are on the wall, totally inaccessible. As I don’t exactly cook, there really isn’t a problem with the cooker, but should I want to cook something when Adam isn’t here, well I can still manage the microwave. Our kitchen is spacious and I just couldn’t resist when I was in there doing a couple of the moves I had mastered years ago just for the fun of it. There is nothing like the agility you acquire once you have been using a chair for a while, turning on a sixpence at speed is just one of them.

The bathroom I knew before I even tried that I would have to remove the bathroom scale, not much of a loss as they haven’t worked for about a year. I can’t make it all the way to the toilet, as the room is half its width at the back. There’s a sort of passage of with a length of about three feet between where the chair would have to stop and the toilet itself, thanks to the walls it would be easy to manage on my feet. It took a lot of concentration to reverse my way back out of the room as there just isn’t an easy way to turn the chair around. The bedroom is the only room where there are space issues. Clearly it had been an add-on long after the flats were built. It looks as though at one time the kitchen which would have been the main living area and the sleeping area for part of the family, was even bigger still. With the fashion for indoor bathrooms and toilets, they simply sliced off the smallest space possible of the biggest room.

Our bedroom supplies once again has plenty of space and, unfortunately, a white carpet, which meant I didn’t even try to go in there this time. The chair hasn’t been washed since it was last out, and the once white tires are rather grey-looking and require a good bleaching session before it went over that threshold. No such problem here in the living room, just a slightly tighter entrance than I would like, but one I can manage. I know Adams answer would be to move or throw out the nest of tables at the end of the settee, but I bought them for that very space and there they will stay. Again though thanks to the shape of the room, there is one area that I can’t get to in my chair. I can’t get up here to my PC. This back section of the room is a large alcove, which is actually raised about 8 inches higher than the rest of the room. Why it was done I don’t know, but whoever did it, created the perfect place to turn into a sort of office space. Neither the step or the distance are of any issue, as every inch I would have to walk has furniture to lean on. The rest of the room has no problems to it at all, I can maneuver with ease and access everything.

I knew before I even sat down in my chair, the points I would have problems with, once you have been in a chair, you become quite good at knowing where it can fit and where it can’t. All the points, where I was caught, were the points I already knew would be a problem. But it wasn’t those issues that I was wanting to test, I wanted to know would it be feasible when it comes to everyday life and would it truly make anything easier. The answer, I honestly don’t know. Right now, it would make life more difficult, there are things that need to be fixed before I even think any further about getting Adam to bleach the wheels. If I was sat in my chair now going to fetch a drink, I would have to make two trips, one to fetch the bottle from the fridge and another to take it back. You can’t carry a full glass and push your chair. That’s just one example of “a fix it first problem” that I have noted. I can already see that I need to put a lot more thought into my everyday life, right down to the minutest detail and see how a wheelchair would change it or what changes I would have to make and accept.

Right now, I don’t think I need or am ready to sit in my chair full time. I am quite sure that Adam would be happier if I did, as then when he was out he wouldn’t have to be constantly worried about me falling over. Although when I lowered myself into the chair I did feel firstly very at home, it was like slipping into an old favourite pair of jeans. Comfortable, well fitting and somehow right, it was the somehow right that answered my question as to why I was even doing it. Despite being pig-headed and not ready to accept that it is a not too distant reality, it is just that a reality I am closer to, than ever before. The weakness in my legs is growing and the occasions that they are just disappearing under me are growing as well. I already know that if I do hit the floor the whole process of getting back to my feet is a total nightmare. I am becoming wary of almost every step I take and that to me says a lot. Now is the time to start planning, to make sure that when the transition happens, it is all in place and that I am not going to find myself a million times a day, exasperated and just getting to my feet because I have no other option. Almost every kitchen cupboard is going to have to be rearranged things that I use, even those that would be on the occasional list need to be accessible.

Returning to wheels isn’t just a case of taking the chair out of the cupboard, it a huge commitment and a huge psychological change that has to be made. I guess that I knew in the back of my mind that this was really the only answer. I had thought of calling in the OT’s but in reality, there is nothing they can do to help. No walking frame, walking sticks or anything else, will stop my legs from collapsing. A stick or frame might actually be a bigger danger than of any assistance. I honestly think they would cause me more damage as I got caught up in them and wouldn’t help me once I was on the floor. I am resigned to the fact that my chair is the only answer, but it has to be done right, or I will discard it, I know what I am like. So, it time to start thinking and planning, time to make that¬†first steps to none.

Please read my blog from 2 years ago – 27/08/2013 – Discoveries and losses

I never thought until today just how many who read what I write will actually not understand every word of it, I suppose it is a position that is compounded many facts. I am aware that I have a large number of Americans who read and although we share a language……….

Helper don’t help

Another drifty day, I guess all of last week has taken more out of me than I thought, I am still doing a good impression of a duck and talking, well it’s an effort. Adam had some more overtime last night and although I can rely on him to come home each evening and talk for about half an hour before the snores start. Last night he had put the remaining shopping away, then came through to the living room to take off his work shoes, and was still sat half way through the process when to my surprise I heard a snore, I think we had had about 10 words each and he was asleep. I have always thought of myself as being a person who goes to sleep easily but he just broke my record, I swear he took one shoe off, sat back and on the next breath, there was the snore. He dozed for about 20 minutes before joining in on life again. I admit that we don’t have huge amounts to talk about, well being sat here all day leaves a limited conversation range. As exhausting as interaction of any type is, I do really look forwards to our evenings together, even thought they can be as short as an hour or as much as 3 hours, they really are my high point of every day. I have been frequently asked if I would like more company at home, but it isn’t about company to me at all, I really wouldn’t want loads of visitors, but understandably time with my husband is incredibly important.

When the OT was here the other day I could tell by her expression that she didn’t like the responses I was giving to her questions, I wasn’t slotting into all her little boxes. Her suggestions that I should be in contact with all the different agencies she felt were important to my having a complete life, were greeted with my normal response of no thank you. From the diagnosis of my MS onwards, different people have put me in contact with different groups and charities, for me they just weren’t right. I know that many people need and embrace all they have to offer, but it just isn’t me and getting others to understand that is really hard. I have never really been what I would call a social person, the idea of attending groups and big social groups, to sit around and talk fills me with horror. I can’t explain it any better than to say it in that black and white fashion, and the worse my health is, the more against the idea of being taken out of my home to go to some group where I can’t do what I want. At home I have the freedom to lie down when my body tells me to, to eat or drink when and what I want. I have my home set up so I can manage, outside I need help all the time, and that is something I know would drive me mad, every single time I had to ask for it. I know that all these groups are set up to do good for those who need it, I may in their eyes need it, but they always seem to forget we are all different people and as such we want different things. Anyway the fact I don’t want their help should please them, it means they have more money to spend on those who want it.

I have to say there was one suggestion she came up with did really make me laugh, she suggested that I attended a falls clinic. At first I just couldn’t see what on earth a falls clinic was, I had this image of them teaching how to fall well, just as they would teach stunt actors. She reassured me that was totally wrong, they would assess me and see if they could supply equipment to ensure I don’t take so many tumbles. This seems to be one of the new changes to the NHS that I think is a great mistake, all these small clinics, separate from everything else. It used to be that you would see your doctor about medication to deal with pain, but no, you have to go to a pain clinic. A physio would supply you with walking frames or sticks, at the same time as sorting out cushions and beds or so on, but now they are in different groups, Rehab, falls, physio and OT, each dealing with one tiny bit. Each taking separate appointments, causing more stress, more hospital visits, upsetting my routine and making my health worse and all adding up to more cost. Sorry but where is the improvement to service there?

Last year I was forced to let them into my life again because I had a problem that I couldn’t fix, well here I am, a year on and nothing has been fixed or made better or even improved. To date all that has happened is that my health has got worse and I have no idea what I can possibly do to get the help I originally asked for. 12 months of putting me through tests, taking me here and there, Adam having to take time off work and what has changed? Not one single thing.

Arrangments

I am a lot brighter today, as I thought it was just one of those days and there was no escaping it, I just had to get through it. Days like that happen to all of us, and I am lucky that they really don’t happen that often. I am not sure how or why but I really do get less of them now than I used to, some might want to put that down to the constant flow of antidepressants but I am not so sure. I think yesterday was really about trying to get my head round the new addition, especially as until I talk to the specialist I won’t have a clear explanation of what is really happening. It is always easy to say don’t think about it, but as we all know the more you try not to think about something the more you actually do think about it.

I have a therapist coming tomorrow, Adams mother goes to yoga and through talking to the class teacher they arranged for me to see a woman who works with other people with multiple chronic conditions. Although she will be here in the morning I still can’t make up my mind as to what help she will be, it is hard for me to see how she will help me as massage is her specialist area and I already know without trying that pressing areas that hurt makes them hurt more, I can’t find anything in me that sees how that will improve anything. I went to some alternative therapies before I know it was MS in a hope to find relief from all the different symptoms I had and all they ever managed to do was make things worse. I am trying to keep an open mind but it isn’t that easy. She is due here at 10 am tomorrow so I will be a little behind with everything I normally do each day as I expect she will be here for at least an hour.

I am hoping that she will be able to help with my legs they are still the worst part of everything. Adam did some housework in the living room yesterday with the results that I had to walk round the room today repositioning all the ornaments. Just the act of doing this with the small amount of bending and remaining bent for a few seconds, has left them aching and fatigued muscles. Activity levels is now zero for awhile while they are recovering, in other words once again having to put sitting pressure on my pelvis so my legs can rest. Oh the fun of doing nothing. lol.

Once again I have spent all morning stopping to dial the number for the OT service but at always all I ever get is the engaged tone. I really don’t know how you are meant to get hold of these people as not once have I heard anything else but engaged. The letter I have doesn’t even have an email address so that you can contact them that way and writing a letter seems ridicules these days, you know I can’t actually remember the last time I wrote to anyone, yes sign things and post it back but actually sit and write something then put it in an envelope with a stamp on it, I have no idea at all. Strange but I use to write letters all the time and it is now something that nearly no one even thinks of doing, I suppose that it is yet another of one of those thing that has disappeared into the past to be lost for ever.

Chronic illness breeds Chronic illness

Adam has headed of to work this morning with the letter that arrived on Saturday, so I am waiting for a call to tell me what they have to say. I did think late yesterday afternoon that it might actually be from the OT department and not ‘Gastro’, I have been waiting months for them to come round to the house to see if there is anything that can be done to make it less painful to sit. It is really unbelievably that they can’t just simply replace the cushion I had with a new one. I have so far had 3 different people try to but they have run into the issue that it isn’t with in their departments remit. The blow up cushion I managed to get off the district nurses is only so so in it’s ability to ease the pain. I really can’t see how anyone is going to manage this one as if 2 inches of air doesn’t stop it what will? I carry more than enough padding in the way or fat to cushion my own backside, but this feeling of the bone being bruised just doesn’t ease unless I am lying down and even then it is still there.

I am sure it has something to do with the Pelvic bones and I looked on line yesterday to see what I could actually come up with myself and to my horror even the origination that specialises in the care of people with what sounds like the same problem as I have ultimate answer was to not sit! Well if I didn’t have to believe me I wouldn’t, but standing isn’t an option. They didn’t seem to even recommend any type of cushion, they said it was trial and error for the individual, but to not under any account use the old fashioned doughnut, as it is now been proved to cause even more problems. I suppose it isn’t that surprising that my body now after nearly 10yrs of sitting more than most, and 5yrs doing little else that I am now having pain. There seem to be slowly more things breaking down due to my mobility, My weight has increased from my average 9st 11lbs of a few years ago, to 14st 6lbs now. That in it’s self is distressing as I was always rather proud of my slender figure add on to that a shape I try now not to look at as all muscle tone has vanished and I feel like a lump of lard. In some strange ways the loss of my body has been a bigger theft in my life than my lack of mobility, we all have a problem when we look at ourselves without the rose tinted glasses of life, but when you see what you don’t want to you have the choice of doing something about it, I have none. My diet is meager to say the least, Adam is a constantly checking that I am eating but I really don’t need much as what do I do to burn it, short of stopping eating all together I see no option but to just live with it.

Chronic illness take so much more from you than just your health and it actually causes more and more health issues as time passes. I know that just walking in the house on occasions makes me short of breath, not a good sign, the added weight, well we all know now what that does to you without me spelling it out. MS is slowly becoming just the route cause of many other things, I am gradually becoming in greater danger of things like diabetes and high cholesterol and so on, it is more a when than an if. The other week I counted 12 conditions I am diagnosed with at the minute, I wonder how many I will have in 2 or 4 yrs from now, I know the list won’t go down or even stay steady it will go up, fact. I do try to not look to far ahead, I’m not scared of what the future holds, it is more that I don’t see the point in getting down about things until I have to, I accept fully that MS will remove more of me by itself but it will also cause directly the appearance of other illnesses as out of my control as MS is.

The phone just rang and it was Adam, the letter apparently was an error, there was some kind of mass sending of letters at the end of last week and the poor girl in ‘Gastro’ has had load of shouting patients calling her this morning. He did manage to confirm that I am on the list, but there is no sign of when that appointment will be yet. It is lucky though that Adam knows the girl he spoke to, as she has added a note to say it is to be that hospital an that one alone. It may sound odd, but there are a few reasons why I want to go there. The ‘Victoria’ is less than 10mins from our house, as I am going to have to have an ambulance there and back I am firstly hoping that the return journey may not require me to be waiting for hours, as almost anyone will be able to drop me off here. More importantly as well is that should I have to be an inpatient at all, with it being so close to home and also the hospital Adam works in, I will have the chance to see him, the ‘Southeren’ is a ¬£10 taxi journey each way, we don’t have that money to spare. But any way I am back to where I was on Friday, there is no point me calling the Doctor and all I can do is, well wait.