Life without legs

I have felt my lungs closing in on me in the last few days. To be honest, I can’t remember when I was first aware of it. It was just there, but it didn’t feel new if that makes any sense. There was a tightness across my back, nothing new there, but to go with it, I had the feeling that my right lung was solid. I don’t mean like concrete, but solid as in not giving, not flexible. I’ve felt it a few times at the end of a hard day, but this has been with me constantly now for several days. At first, I thought it was just the stress of the meeting building up on me, but as I said yesterday, that pressure has lifted dramatically. I am still a touch no the tired side, but that is to be expected, but this thing with my lungs, well it hasn’t changed at all, it’s just there as it has been for several days. I have tried both my inhalers and my nebulizer but nothing seems to touch it. It is as though it has decided to become a fixture in my life. I know it’s early days, but it just has that feeling, like it has come to stay. I don’t seem either to be able to get anything like a stable reading on my blood oxygen. They have been all over the place, from highs of 94%, with sudden and dramatic dips as low as 86%, when I least expect them. The worst ones always seem to be when I have returned from a trip in my wheelchair, which I thought would have been the time, they should have been at their best. Just as exercise raises you heart rate, I thought it would force more oxygen into my blood, not less? Mind you, I have given up on my body doing what it should in all other respects, why not in this one as well.

It isn’t just my lungs that are playing up, my legs seem to be getting worse by the day. Yesterday morning I stood up to go to my wheelchair to fetch something to drink, when both legs from above my knee upwards, just started to shack violently. My knees wouldn’t lock and I was sort of stuck in a half seated position, not able to stand and not sure how to sit down again. For once, though, my arms did come to my rescue. They locked perfectly and I was able to lean on them, while my body decided, just what it was going to do. I hit the seat heavily and actually quite painfully, as often is the case when things like this happen, it was my backside that took the true injury. I may not like the fact that I have gained weight, but sometimes, that extra layer of blubber is actually quite welcome. A few minutes later I did make it to my chair and right through to the bathroom without issue, but once there, I was so glad that we had the grab rails installed, as, without them, I wouldn’t have made it to the loo, at least not without a visit to the floor first. It almost feels as though my legs have noted that there is now little opportunity to achieve collapse, since the bars arrived, as without a doubt, since that day, they have become weaker and shakier than they were before.

This isn’t the first time that I have had that feeling. That my body has been hanging on as long as it could until the new gadget or aid arrives, then bang, it has permission to stop even trying. I am sure that a shrink would probably agree, but say that it has nothing to do with the state of my body, but everything to do with the state of my brain. I like to think that I’m that little bit above such a thing, but I’m probably not. Either way, I can track with total ease the decline of my ability to stand or walk, from the day I sat in my wheelchair for the first time, 5 months ago, to this date. Clearly I took the chair out of the cupboard as there were clear signs that I needed it, but since I started to use it, all of that has speeded up. The grab rails arrival seems to be hosting, the same sort of sudden change. Where ever I am, that final act of truly standing is getting more and more difficult. Almost as though, each time I sit or lie down, they degrade, so when I next need to stand, at first I can’t. I am finding myself instinctively adopting a wider stance, one that I think my body is demanding in the hope that it will provide more stability. I have even found myself not quite straightening my hips, I think that it’s because I fear falling, and that way, I am closer to the seat I just stood from.

It amazes me how the combination of our minds and our bodies changes over time, and how they both seem to do things without asking us. A year ago, I was still capable of standing upright and walking, now, I am either in my wheelchair or shuffling like a little old lady, permanently reaching for the next thing I can hold onto. I have gone from confident to fearing the whole process, even when I’m not truly aware of the fear. Five months, that’s all it has taken. How will I be in another five months? What is the next change, the next process that I’m just waiting to discover, I can no longer do?

 

Please read my blog from 2 years ago today – 28/04/2014 – Adjusting

Every day I tell myself this is it, I have done it, at last, I have found the way to get through the things I have to do each morning faster, every day I find myself here just at about the same time as I do every other day. Just like every other day, I am beating myself up about it. Why is it that no matter what happens in life we are always the ones hardest on ourselves, we are the ones who actually make our own lives tougher than they should be, just because we have stupid expectations of our own ability. Even now although I haven’t worked for years, there are nights when I dream that I am still in the office and that I am trying as I always did to keep all the plates spinning, despite no one expected me to do half of that which I did daily. I have even woken in……

7 thoughts on “Life without legs

  1. Sending much love hugs and healing
    Dealing with your everyday health issues and being able to express how it makes you feel is very touching … I know on a personal level how much strength is put into each new day when your mind wants to do one thing and your body the opposite..you have a strong spirit x

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  2. You are a very powerful writer. It is a very strange place to be in when our bodies do not align with what we want them to do. It’s very much like being held captive but instead of the captor being someone else, we are essentially the captive and the captor rolled into one. For me, the hardest part is that it’s very difficult to truly explain what it feels like to someone who hasn’t ever been put in such a position. I think I find the biggest challenge in regard to my own health issues is blocking out the rest of the world and their expectations and finding my own. I wish you strength and I look forward to reading more of your posts. ❤

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  3. Pam, glad your PIP is going well. I’m popping in with advice that you get your home oxygen concentrator now. You are likely going to need one anyway, as you’ve said, and will feel much better immediately. A blood oxygen level of 87% is the threshhold below which you will start to feel really bad. And you are describing exercise-induced SOB (shortness of breath); your exercizing is the necessary kind of simply moving about in your home when you need to. The ‘desperate trips to the loo’ 😊😱 that we fans of yours know happen a lot….you are so close to that threshold that you will feel awful and have to stay put until you can catch your breath. I constantly go off my oxygen hose to run to another room etc, and if I ignore the 87 and below situation for more than about one minute I am sorry. I quickly fall to 78 so must get back to the nearest oxygen source and recover for 1-2 minutes. Without it, well, picture how you’d feel if, say, on an airplane and your oxygen mask failed to work; or if you were scuba diving and a giant squid pulled off your mask. Most of us can deal with short bouts of this without home oxygen, but in my experience each time instills more fear and anxiety that is dam* hard to get under control. You are in enough distress and discomfort without trying to get by without enough oxygen, my friend. An oxygen tank or portable concentrator aboard your wheelchair will be your best little buddy when you really need one😘 …

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    • I’m seeing my consultant next month, but I have been told that unless I can get rid of the cigs, I won’t be given one. Which has always left me with a question, I have asked them yet. What happens if you use Gas for heating and cooking. Surely lighting the gas ring, or fire, is just as dangerous as lighting a cigarette? It is a question I will be asking when I am there, as it quite simply doesn’t add up.

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