Once again I woke this morning not sure how to twist for the alarm clock or how, not for the first time, to find the strength to hold down the elevator button due to it’s strange position, but it is the only place where it can go. Those are the joys of having a perfectly normal bedroom, rather than a miniature version of a hospital ward. Getting to my feet for the first time of the day was as bad as it had been last night to get of the settee to head for bed. The lower section of my body is being attacked big style, I think this is now day 4 of moving around like a total cripple, rarely not even to straighten up and once that is achieved the pain in my thighs and pelvic are making me walk with a distinctive shuffle and waddle. Strangely when I am either sitting or lying down there is no pain at all, it is just when I have to move around that I am under attack and often taken to the verge of tears, sharp sudden pain still get me that way. It is so easy to forget that there is anything wrong, having been sitting here or on the settee for a couple of hours, but believe me the second I push up with my arms to lift myself to the point were my legs can take over, then I have a full memory of what is about to happen.
I seem to be relying more and more these days on the strength in my arms to do many things that I wouldn’t have even thought about using them for in the past. It is now impossible to find enough strength in my legs for that initial propelling myself to my feet, it’s not just steadying myself, my arms really do the work. I have known for a while now that I can’t get off the floor unless I have a leverage point where my arms lift my body to the point where my legs can take over. Recently my arms are also failing me, so far just when I am on the floor, they just collapse when ever I have tried to crawl, leaving me face down and stuck which is worrying. What do you do when it is not just you legs that can’t make you stand, what happens when your arms fail to the point where they can’t replace the required propulsion? I know they are a lot weaker than just a year ago, I know because the odd food delivery arrives and the driver hands me a bag filled with the shopping for the freezer, I am finding it harder and harder not to just drop them as they are far to heavy. I know from experience that my body gives me vague warning, almost as though it’s dropping hints as to what will go next, then suddenly it’s gone. It has happened time and time again, but knowing that doesn’t help, other than to make the whole situation more worrying. I don’t think it is going to happen any time soon but I do find myself wondering what happens when I just can’t get that initial push, everything I have thought of would still require the push, walking frame, crutches all of it needs a start point. I have tried setting my desk chair higher, but then I just get more and more pain in my backside and shins, I hoped it would make a difference as when we fitted the new bathroom, I insisted on a toilet that is higher than normal, just in case this problem appeared in the future. It does make a difference but there has been one occasion where it all went terribly wrong. The principle is that all you have to do is place your feet and lean forward into standing, but I did once fail to find any strength in my legs and I continued forward on to the floor.
I never thought that my body would ever get to a stage where I just didn’t have the strength to do silly things like carry a shopping bag 3 feet or to just be able to stand. I used to be stronger than average, in fact my favourite trick when I was a DJ was to grab two of my flight cases and start off towards the DJ booth, inevitably one of the security staff would offer to help, an offer I always accepted as I started to run. I always stopped and look back as I knew what I would see, a rather embarrassed big burly guy, dropping the case and staring in disbelief at me. I guess that is actually why I am finding it hard to accept that I just don’t have any strength left, I was equally strong as a child and I don’t think I have ever asked for assistance if there was any way I could manage alone. It actually hurts to loose those things you have always taken for granted, I have been able to stand from a child, I had the strength to do anything I wanted, but now I have both arms and legs that refuse to do the most basic task. It’s a new feeling of being useless, I’ve been useless for a long time when it came to household tasks, but now I am becoming useless when it comes to simple life tasks. That is a huge OUCH!
This is my 760th post, I wasn’t actually looking for that number, it just caught my eye. I have often wondered about going back to the beginning myself and starting to read through it, which has given me an idea. I would read today’s post from 2 yrs ago before I started writing today’s. It might be interesting in several ways, as well I no longer remember any of them and not everyone has read from the start, some have I know, but not that many. It might be good for me to be able to judge the changes in that period of time and to use them for a paragraph a day in which to just pass on my conclusion to all of you. I need to think about that for a while, at the minute I think it’s a great idea, but I need to look for the pitfalls before I even try it.
a huge ouch indeed that is one thing I have noticed about MS it gradually chips away at you your health strength and confidence too I have noticed I rely on my arms more and more but I suffer from arthritis in my left wrist where I dislocated it as a child and so cannot really put pressure on it. So I am caught in limbo it is truely horrible.
It must be so hard to go through all this,Pamela. However you try to keep going and keep positive there has to be times when it just seems far too hard. In a small way I understand your feeling about once having been strong and now not. I developed asthma 7 yrs ago. I’d always had very good health until then. I just didn’t believe it.I can keep it under control with medication but when flu strikes I’m really floored, and hard. I really feel for your predicament. The future is hard to contemplate when you fear it getting worse. My daughter is very disabled with ME and other conditions and it hurts to see her suffer. We must keep hoping there will be help coming in the future for everyone. Keep going, keep hopeful and keep telling yourself how brilliant you are to do that. You deserve so much more. Take care and thanks for sharing, Pam. Love Catherine xx