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……

It’s not the bed

I am amazed at the difference just getting rid of that horrid little tablet has made. My head is now clear and I find that I am feeling so much better, that at this moment, even the pain doesn’t feel that bad, mind you, that could be the increased Gabapentin, after all, it’s not one of those drugs that relies on a build up effect. Today, I feel like a person again, rather than a zombie racked with pain. Duloxetine is supposed to be an antidepressant, for me, just those four days on it, did without a doubt, pull me down. So now I am me, I can get on with life and see about sorting out the rest of me.

It doesn’t matter how long you live with chronic illness, some of the effects of your condition can actually take over everything else. It is now over three years since I went through loads of test to prove what I already knew. That is one of the problems with modern medicine, they have to prove things, tick all of their boxes before, they believe you. My digestive system hasn’t been working correctly, for all that time, and longer. It started with pain across the top of my stomach and a pressure that was making it slowly harder and harder to breath. It was that pressure, that triggered the spasms in my diaphragm and then the intercostal spasms. Once they were triggered, well breathing just got more and more difficult and led to more tests and diagnosis of COPD. My intestine is basically, only, partially working. The nerves that are supposed to push the contents through me, are dead in some areas and relying on bulk to push from behind, to make it pass into the next section. I tried drug after drug, but the results were only ever tempory, and always relied on huge quantities and inevitable, caused more and more pain.

Before anyone says this can be helped by diet, well, I am virtually a vegetarian and my diet, couldn’t be more healthy if I tried, and yes, I do drink plenty of fluids. My GP was at a loss as to what else could be done and I landed up, once more back at the hospital. For once, the consultant I saw didn’t send me for tests, but sat and went through it in detail. His answer was Pysillium and to throw out every drug that my Doctor had prescribed for constipation. In his opinion, they were as useless as sugar water, totally pointless and were probably making things worse, not better. It took me several attempts and a lot of work to find a way, of actually taking the stuff, as it is totally inedible when turned into a drink, the suggested and normal method of taking it. Clearly to me, those who manage this method, don’t own either tastebuds or the ability to feel any form of texture in their mouths. It is the most foul and unpalatable substance anyone has suggested, I, should eat or drink. I discovered I could make a form of pancake which although still odd, they were, at least palatable, and eating one a day was amazing, in just a week, I started going to the loo. It wasn’t a total miracle drug, but I went to loo at least every three or four days, and I went without pain or effort. Like everything else, I have found that I have had to slowly increase the quantity of Pysillium that I consumed daily, but that wasn’t a problem, but, it meant I had to cut other foods out, as the pancakes are incredibly filling, but they worked. Yes, I did use the word worked, not working, as I have had some problems.

At first, I blamed the bed, as I kept waking with a painful back, which with my array of painkillers, was easy to handle. We got a new mattress and the back pain went away, but only for a couple of months. Then, just occasionally, I was still waking with pain in my lower back, worst on the left side, but it wasn’t as bad as in the past and I convinced myself, that it was just one of those things. Last month, I had two nights that were a million miles above anything I had gone through before and I instead of struggling a little to get up, I was struggling big time, even when using the mattress elevator. The pain didn’t just disappear once I had been up for a few minutes, it hung around for about an hour, then slowly faded. I looked and looked for a reason and simply concluded, that it had something to do with how I was lying and nothing more than that.

Two weeks ago, it suddenly started to appear within minutes of lying down and it wasn’t confined to my back any longer, it was running into my legs, my groin, and lower stomach. That was when I started to think again, this had nothing to do with the bed, it had to have everything, to do with my guts, once again. Getting up in the morning, was total agony, a pain that I had woken to, repeatedly overnight, it was off the scale of what I had known in the past. I could hardly manage the few steps from my bed to my wheelchair. As luck would have it, that morning, I went to the loo very soon after waking and I passed what I would call an acceptable quantity, more importantly, the pain vanished. That was the first clue, but far from the last.

I no longer have to be lying down, it appears in response to almost anything, including wind and simply eating, the pain could be triggered. This week, I have been to the loo three times, yet this morning the pain was once again off the scale. Walking was almost impossible as the pain wasn’t only in my groin, but my sciatica nerve, something I haven’t felt since I was pregnant with Jeffry, and unusually, the front of my thighs. I woke not just because of the pain, but my breathing was also difficult, to the point that it was my breathing, that forced me out of the bed. I haven’t been to the loo, nor has the pain totally left, there’s a shadow pain where the worst points where. I haven’t just accepted my own conclusions, I checked online and was surprised by the amount of information there is out there that confirms just what constipation can do your back.

So what do you do when you have done everything, that your doctors have said, and suddenly find yourself, in a far worse condition than any you have found yourself in before? I have been to the loo each day for the past three days, yet here I am as always, bloated and in pain. The pressure being caused on my body, is unbelievable, back, chest and everything inside me are being squashed. I’m not constipated in what I would call the normal way, as my bowels are moving, slowly but moving. I am rapidly coming to the conclusion that I have an area that is now working less effectively than it has in the past. Before I started going to the loo this week, I hadn’t been for over a week. I had put that down to the extra food that I ate over the New Year and that it would move when it was ready. Those four motions I have had, well they would match to the four days I ate my pancakes, well I couldn’t eat them, as well as those festive meals I allowed myself. I have no choice, tonight, I have to add in a laxative, something I don’t like doing now that I have been clear of them for so long. They are unpredictable, but what choice do I have. I no this is another one of my guesses, but, I think like all of me progression has played its part. Now my entire gut, both upper and lower sections, are backing up, and causing me pain. Once again, I am going to have to up my Psyllium dose, but from here on in, I can’t ignore any pain in my back, even the slightest. The last thing I want, is for my bowel to become impacted, something I think is a growing possibility. For the last year, I have wrongly thought this was a problem that was totally under control. Psyllium was my wonder drug, even though it isn’t really a drug, more a supplement. I had simply forgotten one thing, nothing in my life ever stands still, it just gets worse and I can’t afford to ignore anything, not even a little pain in my back.

 

 

Please read my blog from 2 years ago today – 14/01/2014 – What next?

Please tell me what is so hard about just going to bed when you are tired? It seems to be something I am doing less and less when I need to and more and more because the clock allows me to. I have been pushing…..

 

 

 

 

 

 

 

 

 

 

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

The point of strength

For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

A wake-up call

I found myself hanging off the back of the bedroom door. Something inside me was screaming, it was one of those moments where everything just suddenly felt too much and I needed to silently scream. I was just stood there with both hands grasped tightly to my dressing gown, with it taking as much of my weight as I dared to set free. All I wanted was to stay where I was my face buried in the soft velvet of my dressing gown, letting that tension escape. I suddenly realised that where I was, was just a little stupid. What if Adam wanted something from the bedroom, half hanging off the door wasn’t exactly a safe place to be, or one that I would be able to explain with ease, or without feeling rather stupid.

The day had started out without issue. I had written my blog, sent out all my tweets and spoken to Jake. Nothing unusual and nothing there to wind me up or steal my energy, a day like any other. I decided to spend my free time trying to find some new sites. Ones that actually had something to say to me, rather than the millions of sites which talk solely to those with Relapse Remitting MS. Read most sites and their truth is that we are all the same, going through a variation of the same thing. That is the first and biggest lie that they all tell. Have any of the three forms that start with the word Progressive, and you are on a totally different journey. To my total surprise, I found one. One with a twist which after my writing how I hate all that Adam has to go through because of my health, was actually fitting as it was written by a carer. It was so well written that I was blown away by it, as it painted perfectly the worst side of what a caregiver reality really is. I had been only able to imagine it before and what I read surprised me as my imagination hadn’t done that bad a job. Donna Steigleder husband is at a later stage of the disease than I am so it was also a picture of my future as well as Adams. Her post was so well written that I forgave her for missing out PRMS, there are so few off us that we are frequently forgotten, especially by the researchers, which explains why there are no treatments for us either.

In so many ways, I both needed and didn’t need to read her words. It hard for me to find the words as to how it feels to read your own future, well parts of it. Clearly there will be differences, but there will be a huge amount that we will share. I’m not stupid, I knew that much of what I read was ahead of us, including Adam feeling as desperate as Donna clearly does at times. Out of our two lives, it is still his that I fear for the most. I am sure that Donna didn’t hand that post to him to read when she felt like that. Or sat down and talked it all through with him, her clearly caring nature tells me that. I don’t want Adam to ever feel that he has to hide all that anger, remorse, pain, guilt, fear and most of all that feeling that somehow he might be failing both of us. Right now I am at the tail end of the scale of MS, somewhere in the later stages of stage 8. Stage 9 is still a way off, I don’t expect to be mainly bedbound anytime soon, but a bad flare could change that tomorrow. Having said that is spending 13 hours a day, partially bed bound? It’s a definition I find hard to work out, as to me you are either bed bound or not, how can you be mainly bedbound? To me, the stages are somewhat unbalanced, stage 8 is met once your life is substantially changed and you are using a wheelchair either full or part time. Seven stages to that point and only two to take you to death, to me, it doesn’t quite add up. I am at the point where yes Adam has to pick up and do the things I can no longer, but his actual caring for my needs is still very limited. As long as my health stays at this level, there is a normality to life that still remains. But I don’t think that either of us are quite prepared for just how much our lives will change as time goes on. It doesn’t matter how well you research your condition, how much you both read and talk, no one knows exactly how you will manage until the point that it actually happens.

I think reading Donna’s post yesterday was a little of a wake-up call. I have spent a lot of my time in the last few years kidding myself that life is going to stay just as it is for many years to come. I admitted a while ago that I had realised that my health had changed more than I thought, or maybe noticed is a better word. I suspect that we all sweep along through life believing nothing has changed. Life has its stage post wake-up points, otherwise know as birthdays. There are no wake-up points when it comes to our health. Yes when I started using my wheelchair, but that was 10 years ago, as I said, how can I still be stuck in stage 8? I know that the mitoxantrone treatment turned back the clock dramatically, but I was never able to step out of my chair. The milestones are spaced so far apart that it is easy to kid yourself that you are doing well. I have been kidding myself that I was fine, that I wasn’t going to fail anytime soon, I think I need to reassess that thought. I’m not saying that life will change tomorrow, but I have to start preparing myself for the fact that it will, something I haven’t been doing. Adam may have been, but if he has he has been doing it alone.

I read yesterday several posts by different people, but the one I have mentioned was the only one that hit me between the eyes and left me reeling. Sometimes things appear for a reason a that time, a reason that we don’t see but feel. Emotionally, it was a kick in the teeth, as I had to say by the end of it, that it was a flag post waving in front of me. A warning that time is passing, my body is failing and the future is getting closer. None of that can I change, but I have to for both of us start to prepare myself for it, just as I prepared for the stages that have brought us this far. If you are mentally prepared for what can’t be changed, when it happens, well you keep going, rather than being stopped dead in the water. I knew and had worked on the possibility of losing the use of one of my hands. When it actually happened, I got dressed and went to work, rather than sitting about feeling like the world had ended. I knew the day might come that I might be housebound, I had worked towards that possibility and changed the way I worked, so I could work from home. Every step worked because I was prepared. Now I have reached the point where I have to face the next stage. I have to work on getting my mind around not being able to do even what I do today. I have to prepare for both stage 9 and stage 10. I have to start seeing it as real, not some distant possibility.

Last night when I headed to bed and stopped at the door, was because inside I was hurting. I was fighting so hard with myself over the fact that reality has been knocking on my door loudly in the last few months and I was waking up to the fact that I can’t ignore it. Donna’s post was the final kick I needed. My body and my life had been dropping clues for months, but I was too stubborn to listen to any of them. Being pigheaded is a wonderful tool to have when you are living with a body that is destroying itself. It can really work for you. Sometimes though it works against you unless you are lucky enough to be woken up to that fact, well it is equally destructive. Thank you, Donna.

Please read my blog from 2 years ago – 28/07/2013 – What next? The web? 

For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in throughout the really hot weather, but there was no sign of it, so what made is appear now, well