I seem to be finding a growing peace in just sitting doing nothing. Which is undoubtedly, not very me. I know it has a lot to do with just how tired I am, but, to find pleasure in sitting in the middle of the living room in my wheelchair, rather than here, or on the settee, really isn’t me. After all, there is one thing that goes, without saying, it’s messy. It’s bad enough, that my wheelchair now sits tucked in edges of the room, all day long, but, for it to sit in the middle, with me in it, is a million times worse. I had just had lunch, and instead of tidying up, tucking my chair in it’s afternoon spot, I just sat there, being messy. It doesn’t actually matter where I am these days, I find myself more and more not rushing to do the next thing, I just sit for a while, doing nothing. Space has become a place I find myself contemplating a lot. Not the one filled with stars, just the one in front of me, directly in front, not even as far as the next object, just the space in between. I can’t even blame a lack of concentration, or my mind flitting off somewhere else, as I know exactly where I am, I’m just not moving, and the oddest thing of all, it really feels good. I wish I could explain it, beyond saying, it just feels right, or it feels good, but I can’t. I just seem to have developed a desire to do nothing, and whenever it happens, I always feel tired and it always feels so right.

If Adam had been at a home, there would have been no sitting doing nothing, I would have scurried around as always, rushing to tidy up and to get life on the move. Not that he would have been pushing me to, that’s totally not him, but I pushed myself when he’s here, why, I don’t know. I suppose, it’s like a lot of other things, you don’t want to appear any less than the person they met and married, despite the fact you clearly are. But Adam wasn’t here yesterday afternoon, he was at his families annual Christmas get together. So there I was, on my own on a Saturday and free to just let my mind and body do what it wanted, absolutely nothing. I had completed all my morning routine, and I had already planned my afternoon, something that wouldn’t start until I moved and tidied up after lunch. It is those transition points in my day, that I seem to find myself extending, pulling out every second so it expands over more than two. I know I can’t stretch time, but that’s how it feels, as though I am making time for me, to be anything but me. As if, by just doing nothing, I am resting, grasping those moments of wakeful sleep, that I can’t find anywhere else. My body has been running on empty for far too long. I have tried everything, from eating more, which has just made things worse, to making sure that when I am doing nothing, that it really is nothing. No fidgeting, no moving things because their not in their ideal spot, doing nothing had to be a total stop. Nothing has worked, I’m still tired. But yesterday, wasn’t going to be the start of my new life, it couldn’t be as last night was the final of “Strickly come dancing” and it didn’t finish until 10 pm, an hour past bedtime. There was no way, I was going to miss it.

No, I wasn’t making an excuse to ignore what I know is the right thing to do, I have sat through every beautiful minute of that show, and I wasn’t missing the finale. My new life pattern started this morning, but before that, I had to stretch my ability to stay awake. I had to find reset and I had to find energy, something at lunchtime, I clearly didn’t have. With Adam gone and the house eventually tidy and silent, I went to bed, with an alarm set for 2 and a half hours, doubling my normal afternoon nap. To my shock it worked, I actually slept, not even fitfully, or in a half dream, I fell into a deep sleep. Clearly, for once, my body was willing to play my game and not its own. For the first time since, to be honest, I don’t know when, I was sat here wide awake right through to the final seconds of the show, and it was so worth it. If I could sleep like that every day during the day, I wouldn’t have half the problems I have had for the past year, but it normally doesn’t work, and I’m not going to be tricked into thinking I can make it do so. In reality, I wasn’t going to get an extra hours sleep last night, but I was still setting the alarm for 8:30.

So here I am, at the start of a new life pattern and already beating myself up, for not being on time. I knew this would happen, but even knowing that, hasn’t made a single second of it any easier. I have been watching that clock out of the corner of my eye, all morning. Every time I have stopped and found that space, I have chastised myself and flown back into action, trying to make up that hour, that I feel I have lost. This is going to be the hardest thing about letting go and doing what is right. I know in time, I will get used to it, that I won’t be looking at the time, or the charter count, I will be once again relaxed and at ease with life, but that’s not going to happen today. Today is going to be super hard, and my body is going to make it even harder. My bowels have decided that running me back and forward to the loo is a good game, my bladder thinks so too. My dexterity is shot, and I am hitting all the wrong keys, meaning I need to correct almost every word and my legs, well they have just vanished in disgust of the whole thing. Who would think shifting your day by one hour, could be so hard. I keep having to stop, not to stare, but to relax, as my shoulders seem to have an infinity with my ears today. The tension in them is unbelievable, and its triggering pain in places that don’t normally bother me, not to mention the fact that my nicotine intake has doubled. I guess that you can’t take a lifetime of training and undo it in just a few hours. This is going to take time, and it’s going to be hard, but I will hopefully eventually feel better for it.

On of the hardest things to find within chronic illness, is balance. You have to work with your health, but you also have to have a life, getting the balance between the two, doesn’t happen overnight. I have rebalanced so many times, but I have never really tried to change it so dramatically. It is easy to cut chunks of the end of your day, that one I have achieved with ease over and over. I hadn’t had a bedtime of 9 pm since I was a child, but cutting back to it, was fine. Yes, I lost time with Adam, but it was equally the end of the day, that suited both of us best. Now, I think nothing of it at all, unless the TV, like last night, puts on something that watching a recording of, just isn’t good enough. There is, though, a point, where you can’t cut it back anymore, unless, you really don’t like your partner, and don’t really want to spend any time, with them at all. Cutting an hour out of the start of your day, throws you for the entire day! Yes, I can tell myself, that 11 am is actually equal to 10 am, but try getting your mind to believe it. Go on I dare you because before you know it, you are rushing once more, and your mind has tensed your body into a mess that you can’t untie, without losing more time doing it. Deadlines doesn’t contain the word “dead” in it without a reason. I know, I’m being hard on myself, but that’s me, not the messy, can’t move person, she is someone else and I don’t like her, so I have to make this work.


Please read my blog from 2 years ago today – 20/12/2013 – No words

It seems as though the house is getting colder by the hour, it feels as though the wind has been bustling past the windows and through the trees now for several days. It makes itself known whenever…..

Condition blinkers

I love it when you find something good, almost by accident. Lately, I have been having a lot of neck and shoulder pain, it doesn’t take a doctor to work out why, just as I’m sure you too know the culprit, my wheelchair. I have been doing all the standard things, massage, relaxation, warmth but nothing seemed to be making much of a difference. Just over a week ago, I went for my afternoon nap and settled into bed as I always do. Lie down, obviously, get comfortable, which for me, has to be on my back, but it still takes positioning. I know, surely flat on your back, is flat on your back, I used to think so too, but, it still takes the normal shuffling, for true comfort. Then the last two acts are probably different to anyone else. With my arms either side of me, I reach with my fingertips as though I am trying to reach the bottom of the bed. Doing so, means that I am forcing my shoulder down, so it’s impossible for them to tense, a simple, but effective trick. If you have never tried relaxation techniques, or thought them airy-fairy, or even tried and failed, I can honestly say that I’ve been through each of those steps, and eventually, I became a convert about 5 or 6 years ago. If you are a doubter, skip the next paragraph, unless you’re ready to open your mind just a little bit. The final thing I do is to run through my relaxation process, simple and effective to let me slip into sleep. On this particular day, sleep didn’t come, sometimes it doesn’t, so I lie there for an hour, just running around my body in my mind, relaxing each part over and over until the alarm sounds.

My neck had been really sore that day, so as I couldn’t sleep, I worked again and again on my neck, especially, at either end of it and right around it as well right up to my jaw. The best description I can think of is to say, that I was trying to relax it right down to cell level. Even though I was as sure as I could be, that there wasn’t any tension left, as I had long since passed that point where my neck felt as though it had vanished. I was lying there totally motionless, when I honestly felt something change in my neck, not so much a physical click, but more like a muscle I didn’t know was even there, suddenly let go, and it cascaded. I know better than anyone, that this next line sounds stupid, but it is exactly what happened. It felt as though, a hole had appeared exactly where the sudden change was. It slowly grew, spreading up to the base of my skull and down to the top of my spine. For the rest of the day, I neck didn’t hurt at all, but I was so intrigued, that I tried to repeat it again that night, but it just didn’t happen. Two days later, the pain was back and when I went for my nap, I decided not to let myself sleep. I repeated the whole thing and once again, eventually the same thing happened and the pain vanished for nearly the whole day. That time I wasn’t so lucky in the result, but I had come up with a plan. I have been working on my neck every afternoon and every night before I sleep. Not for the whole hour, as I now know where that “click” point is. I do have to be really relaxed to before I start on it, but as long as I am, I always feel a change. Since I started, I haven’t had any pain bad enough to complain about, and if I do feel anything, even when sitting here, I can improve it. I think what is happening is actually quite simple. I believe, that there is a nerve that is being caught by the tensed up muscle, not near the surface but deeper in my neck than my normal sleep relaxation process goes. With everything as relaxed as I can possibly make it, it is simply released and the pain is gone. Not rocket science, or anything to do with my PRMS or any other condition, other than normal everyday muscle tension, but it’s so worth doing. Hippy-dippy mumbo jumbo finished.

It is actually one of the easiest things to fall into without even meaning to, that everything that is happening in our bodies has something to do with a “condition”. Once you have a diagnosis, or especially, a collection of them, we are very inclined to sit here and try and make it fit, to something a doctor has told us we already have. I used to be so guilty of it, I simply couldn’t have an ache or pain, or something odd happens that wasn’t to do with either my PRMS or Fibro. I even found myself sitting scouring all the different sites, actually hoping that my “new” symptom, would be listed somewhere. It was almost as though someone had suddenly fitted me with a pair of blinkers that I just couldn’t see past. Stupidly, when I got over that phase, I went totally the other direction for even longer. I will actually take a little of the blame of myself, in both cases. For someone who is diagnosed today, there is a wealth of detailed information on almost everything other than the rarest of conditions. When I was diagnosed, nearly 15 years ago now, the internet was still very much a baby and doctors, well they didn’t like anyone putting anything online about health at all. Back them, even companies, like the Mayo Clinic, put up nothing about conditions. What was there, was sparse, mainly put up by people who not only had the condition but were amateur web designers as well. No, you couldn’t just set up a blog, or open a Facebook page, they didn’t exist. There were some fledgling site in the USA, but back then and even today to some extent, the information country by country changes. Having discovered that fact, well, the “new” symptom, might not be recognised here, but what about elsewhere? Eventually, I got fed-up with never finding what I wanted to and I stopped looking. Over the years of not looking, the information improved, suddenly things like nausea were a symptom of MS, according to medical sites in the USA, on some in the UK and definitely not in other places. Trust me, it gets confusing.

You would think that a condition is a condition, that the symptoms that make it up would be recognised and set in stone worldwide, but they’re not. From what I can make out, it doesn’t end at the web, it is just the same story with our doctors, they have just as many varied opinions. As patients, we don’t stand a chance of knowing if we are new ill, normal ill, or iller. If the so-called professionals can’t make up their minds, we are never going to stand a chance of assigning anything correctly. As a rule of thumb, I have come to the conclusion, that it is best to assume, it is something totally new, as I did with all the issues I had with my intestine. So OK, it did land up as I feared, being down to my PRMS, but if I hadn’t been sent to see the Gastrologist, I wouldn’t have eventually been given the right solution to managing it. I very much doubt if I had insisted in seeing my Neuro, that that would have been the outcome.

There is, of course, one other factor when it comes to knowing where our “new” symptom belongs and what is wrong with us, ourselves. I know I have done it once, but I can see that there is a potential for it to happen to all of us. Once your chronic illness is fed up of living alone, it invites its chums along for the ride, and we, eventually, stop caring. A new pain appears, you’re more tired, so what! It’s an easy one to fall into and totally understandable. Putting everything down to current conditions isn’t sensible. For me, it was a case that I was passing out or feeling as though I was about to. I put up with it for years, even after I managed to knock myself unconscious. Dizziness is clearly part of my PRMS, but this was slightly different, as I can feel the blood draining. If I lift my arms when I feel bad, I will pass out. In PRMS, you don’t pass out, just fall over due to lack of balance. I gained another condition they can do nothing about, Vasovagal. They can’t treat it, but there are drugs and situations I need to avoid. Life got easier with an answer. If I hadn’t seen the doctor, I might have been unconscious more often, but now I know. Years have passed and I could with easy now ignore symptoms, simply because it’s too much of a bother to do anything about it. I know, that that has to be avoided.

Our health issues don’t have a start date or an end date, we can get worse with the conditions we have, or possibly better. New ones can appear and often there is a simple answer, even if we think it’s an odd answer, it’s worth trying. It doesn’t matter if you can find it on the internet or not, if our doctor recognises it or not, if it’s there, there is probably an answer. We don’t need to be told, that cures are rarer than most people think, but we don’t have to suffer either. I was the biggest sceptic when it came to anything that didn’t look like a tablet, now I do relaxation daily and it helps me. If there is one thing that I know for sure, if we try to ignore it, it normally get’s worse. On which note, yes, I am talking to myself, I know that my hands are getting worse and I know that the day that I need to pick up the phone and ask for help is getting closer. Yes, I did try relaxation, it didn’t work, well it did when I wasn’t useing them, but the second I did, it was all undone. I know I have been putting it down to my HMS, but is it? They couldn’t do anything about it years ago, is the answer still the same? According to the web, yes, but who knows. Ultimately, no matter what, our health is in our hands and if I do nothing, nothing my hands won’t improve.


Please read my blog from 2 years ago today – 01/12/2013 – Accepting it’s happening

Nothing to do with my MS I know but I have a really sore shoulder and arm this morning, whatever happens to me it always seems to be my left side that it happens to. Injury or…..

I so need one

The thief of life is at it again. I am so lost and confused this week. I can’t even hold onto the day of the week, for more than a few minutes. It feels as though, I have spent the whole week checking the calendar, or double checking what I am doing and why. I can deal with pain, with spasms, all the different memory problems, with any of the medical symptoms of my gang of assailants, but frustration drives me up the wall. Yes, I know, that is the nature of frustration, but it’s just so frustrating. It doesn’t matter how many times, I stop, relax, then start again, it just reappears, which winds me up even more. This whole week has been that way. It doesn’t matter that I have had a good nights sleep. That I’m as close to rested as I get. That I’m happy and ready for another day. None of that matters when you can’t remember if this is Tuesday, Thursday or even the one in between, that I couldn’t remember the name of earlier. Frustration has already found its way in. My PRMS really has got this whole game of illness polished brighter than any diamond. It needs stress to thrive, all the stress that I have over the years strived to remove, item by item. I had taken it’s greatest triggers and smashed them into a fine powder. So what does it do, it removes even more of my memory, it truly is a devious and clever opponent, as frustration, creates it food source with ease.

Frustration and memory are the perfect combination. It’s rare for me to get frustrated by my body, well, occasionally, as yes I am human. But there is no competition between them, memory is the perfect trigger, and wins hands down. At times, it can be perfectly clear. Last night, I was watching “Eastenders” and I could with ease, remember small details, from an episode that I saw years ago. Two seconds later, I couldn’t remember the name of the character I was looking at, or their current storyline. How can one brain do that? How can it send me somewhere to do something, then decide to wipe all knowledge of why I moved at all? Why can it cut out huge sections of my own life, when I need them, just for them to be there later on? How can it steal my words from my mouth? Why doesn’t it tell me that I put lunch on to cook over an hour ago and that it’s now quietly burning? How can it leave me lost, confused and occasionally terrified, by the tiniest change in my own home? How can it be so contrary about why, what or when? How can it do all of these things and so much more? For someone who adores perfection and precision in everything, it is the cruellest trick my PRMS could have chosen, from the list of possibilities. But the cruellest bit, the bit that makes it frustrating, the fact I am 100% aware of it doing them all.

I don’t know just what has upset me this week. Things had actually been quite a bit better recently, which rightly or wrongly, I have been putting down to the fact my breathing has improved. Within a couple of weeks of having my nebuliser and the new inhalers, I couldn’t help but notice that especially, my speech improved. It might just have been coincidence, but I really don’t think so. I know that I have I said it before, months ago, that I was sure my brain wasn’t receiving enough oxygen all of the time. It was, though, just my opinion and I have nothing to prove it was my COPD, or even back it up, other than my experience. Not only has my speech been clearer, but those long gaps while I searched for the next word, have been more than halved. My mind has been less fuzzed and far quicker, I just generally felt more like myself. When you have a shopping list collections of illness to choose from, what is causing what, or has been the trigger for anything, is almost impossible to workout. Add in the fact that illness is phasic, the picture is even more confused. What I do know is this. Right now, my brain still doesn’t feel fuzzed like it was pre-nebuliser, foggy at times, yes, but not that almost audible fuzz. My thought processing is sharper and my speech clearer than pre-nebuliser. My memory has fallen apart again, so this time, I’m blaming either my PRMS, or my Fibro, but my money is on the PRMS.

On the surface, my memory problems sound like nothing in the great scheme of things. It’s only when you actually take a few moments and think of the realities of their effect, that part of my frustration becomes even more understandable. Every time I forget something that is in another room, means I have to make another trip to fetch it. Every trip, planned or not, seeps away at my energy reserves, increases the fatigue levels in my arm muscles and frequently triggers spasms in my intercostal muscles. It also means that pressure is being put onto my hands, which increases the chance that my thumb and knuckle joint will dislocate, either then or later. Yesterday alone, I was forced into making 8 more trips than I really should have needed to complete. On Monday, it was more than double that. When you open up that picture and look inside, my agitation and frustration, starts to make more sense. The more frustrated I get by it, the more I seem to forget. For new readers, please don’t suggest any of those so-called memory aids, been there, done that, doesn’t work. Yesterday afternoon, I had to clip my nap as I really couldn’t put off having a shower. My shower was probably the only thing that went smoothly yesterday, and actually, took less time than expected. Because of how I was feeling, I headed back to my bed just to try and spend half an hour totally relaxed, but not asleep. My plan backfired, despite my having sat here, double checking, that I really did have half an hour to spare when I got up, I discovered that I had got the time totally wrong. I hadn’t just looked at the time on my PC, I double checked it by the alarm clock in the bedroom. Somehow my brain had done what it so often does, it had tricked me. My relaxation was wiped out totally, my frustration and stress levels shot through the roof. I stopped trusting myself with time a long time ago, but when Adam isn’t here to confirm things for me, this is what happens. If all of that isn’t enough, I started my day by going through just half of my morning medications. I used my nebuliser and inhalers but totally forgot, for two hours, until my pain levels were rising, to take all of my tablets, every single one.

If my brain would just hold onto what it is supposed to be doing, this week, would have been a totally different story. I know we are only one Wednesday, yes, I checked. But I have been more tired than I should be and I have spent so much time just cursing myself, over time wasted and unavoidable confusion. My frustration values, clearly have been high, but there really isn’t anything I can do about it and it’s worrying. As I said early, frustration breeds stress, and stress breeds any problem you can think of that my health has ever done. I can see that the rest of this week is just going to be one long battle with the whole thing. I have frequently joked, “Who needs a brain”, well this week, that joke has run out. All I want right now, is even half of one, as long as it’s the half that seems to be missing.

Please read my blog from 2 years ago today – 25/11/2013 – The hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip……

Don’t dismiss anything

Tiredness is a funny thing, the way that one second I can feel fine, and the next I want to crawl into my bed and never get out again. I know for me that it isn’t just a need to sleep, this kind of tiredness comes from a fatigue. Fatigue used to just be that feeling that my limbs not only couldn’t do anything, they were quite simply dead and I needed, no, had to rest. Over the years, I discovered that sleep wasn’t the answer, it helps, but it isn’t the answer. I could sleep forever, but fatigue doesn’t go until it is ready, it just builds and builds. The longer you live with it, the more it grows, somewhat like an ever rolling snowball, it picks up just the little bit more every day. I know that I have written a post before about the difference between tired and fatigued, and if I say so myself, it was a great post. So why return so soon about something that was written well and describes it fully? Well, because, that post was about that dragging fatigue that holds onto not just our bodies but almost our souls as well. This is about muscle fatigue, something quite different, but without a doubt, rolls over into the more major form.

Recently, I have been finding myself floored but unable to sleep and I don’t remember that happening for years. I still sleep perfectly at night, but it is the afternoons when I now often find myself lying there in a half world. I am on the cusp of sleeping, completely relaxed, but I am totally aware of every inch of my body. I can feel each part of me, even those that appear to be missing and all of those that have their own individual sensation.  My body is alive with areas that are numb, others tingling, some that are both and other that are causing me pain. There is nothing there though that is enough to stop me sleeping, but it just doesn’t arrive. It has nothing either to do with my thoughts or an overactive brain, mine is rarely that, but there I lie, with a completely exhausted body, that is craving to just be allowed to shut-down. In the past, I have tried using relaxation techniques against fatigue with little positive effect. Not surprising really, as fatigue, has nothing to do with anything one would call normal, it is far more than tired, far more than muscles that have just been used too much. Neither sleep nor relaxation seems to be a cure for fatigue, it is more a sticking plaster that lets you forget about it for a while.

A few years ago, if you had suggested that I should go to bed and just lie there for an hour or more. doing nothing, I would have refused point blank. My refusal would have been heartfelt, as there was nothing I would have found more difficult, or more horrific a thought, as wasting an hour, lying around being bored. Even if I had tried to, the boredom would have driven me mad in less than fifteen minutes, I would have been up again. So for me to be able to say, that I can now do this with ease and that I actually enjoy that hour of lying there doing nothing, something major has to have changed. It is the absolute truth, that nothing that has happened to me in the past year has surprised me more than this, but there it is, I can now do it. Clearly, I have made a discovery, something that has allowed me to change so dramatically, and yes it does have something to do with fatigue. I wouldn’t go as far as saying that I have found a cure, but I would go as far as to say, I have found a real sticking plaster that soothes and doesn’t just distract. I’m not going to lie, I wasn’t looking for something to help, I was just looking for sleep and I was working through my relaxation technique in the vain hope of finding sleep, but I found something else.

I have to admit that I have been holding back on writing this, because it does sound kind of silly, but it has helped so many times now, that I feel it’s only right to share it. I had gone to bed one afternoon and my hands were really bad, painful and heavy the typical fatigued muscle feeling. The second I was settled in bed, they started that intense tingling that is just one click away from painful. I had already earlier in the day been sat at my PC, stopping every now and then to massage them, as they felt so knotted and tight. For me, massage is something that rarely helps anything, other than spasms, but it is one of those instinctive actions that you find yourself doing, whether it works or not. When I couldn’t find sleep, and my relaxation system hadn’t worked, I found myself lying there cursing my hands. They were so alive with sensation, that I was sure they were what was blocking my sleep. I decided to work on them again, but this time, instead of just mentally relaxing my whole hand, I went finger by finger. When I reached the ones that hurt the most, I added in what I can only describe as mental massage. In my mind, I imagined gently massaging the muscle and adding rays of warmth. I could think of no reason why it would work, it was intended more as a way of keeping me from getting up, as I knew I really needed the rest, even if I wasn’t going to sleep. To my surprise, when I had completed my entire left hand, the level of complaint, honestly seemed lower, not gone, but a bit better. There was a marked difference between the two hands, that hadn’t been there before. I did the same exercise on my right hand with the same result. I had purposely done all this very slowly as I was time filling after all. When the alarm sounded, I got up and thought no more about it.

Usually in the evenings, I find my hands incredibly painful, especially since I have been in my wheelchair. That evening, yes, they were still painful, but there was an improvement, I didn’t link it at all, until a couple of days later, when the whole thing was repeated, as it has been multiple times since. I decided to test it out on not just painful muscles caused by use, but highly fatigued ones, it works with them too. I have analysed and worked through the whole thing and now, I don’t bother with the imagined heat anymore, that I think was just silly. What I have done, is to have come up with what I think the reason is, and the system that makes it work. I use my relaxations system frequently, so I can now use it with speed and efficiency, for going to sleep. By slowing it all down and really concentrating on making sure that every muscle, rather than just whole limbs, are as relaxed as they can be, not just enough, but totally, is what is reducing the pain. I am more than aware that the technique I use, is used widely, and I am sure that many who use it, like me, has become skilled at relaxing at speed. I suggest strongly, that you slow it down as like me, you might actually be missing a benefit that is there waiting. It is a long way from a cure for fatigued muscles, or that dragging fatigue that goes much deeper, but it is a help, a really good amount of help that makes it worth well. So much so, that I now go for my nap, not caring if I sleep or not, as that hour and a half, is of benefit either way.

I am so convinced of it’s benefits that if I find myself aware of aching muscles during the day, that is now my first stop, rather than just putting up with it. It isn’t a miracle cure, but it does make life just that bit more comfortable and that to me is worth the time I lose. In the past couple of months, all I seem to have done is to slow down everything that I do, to take more rest, relax more and generally, take life at a smoother slower pace. Every time I have tried this in the past, it just hasn’t worked, I guess that I just wasn’t ready for it to, well it does now. It appears, that no matter what it is, just because something hasn’t worked before, isn’t a reason to say it doesn’t work at all. I would strongly suggest that even if you have tried any relaxation techniques in the past and dismissed them, try them again and even again, you might be surprised by what you discover.

Please read my blog from 2 years ago today – 30/10/2013 – Avoiding depression

I have always been someone who likes to live life with challenges, to have lists of things to achieve and to work on, not for money, praise or anything else, other than self-pride. I have lost count the number of times in my life people has asked me….

Understanding with love

I feel as though I am already behind today, but oddly, I’m not that bothered about it. I honestly don’t know what has changed in the last little while, but there has been a change, one that has made me a lot more laid back about everything. I noticed it a few weeks ago when I suddenly started taking a lunch break away from my PC, something I wouldn’t have dreamed of doing a year ago. Slowly since then, everything else has joined into that laid back feel. I don’t even panic any longer about getting to be by 9 pm, if I am a quarter or half an hour late, it doesn’t really matter any longer. I think that it was the realisation, that my life is now reached the point that it has to be supported, by things outside of me, has made me realise that I can’t stop, what is happening to me. That is a life changing shift, and my life has shifted with it. That rigid determination to control, to keep my health steady, which I have to say succeeding for 5 years, had reached the point where it was no longer working. I knew eventually, no matter what I did, it would fail, but I’m proud that I managed it so well for so long. This new phase in my life, requires a new thinking, a new way of living and this time, not as rigid. Yes, still holding to the same principals, but with a softer and more elastic quality.

I still believe that structure is required. I still have a time at which to get up and a time to go to bed, both to be aimed for, but if missed, it doesn’t really matter, as long as it’s not into the next hour. I have times through the day at which I eat, not rigid to the minute, just approximate. The big change on all of them is that after I eat, I sit, I rest, I don’t rush so that I can launch myself into my next phase of the day. Even when I am sat here, other than when I am typing this, I stop often and just watch, yes, watch not just listen to the TV. I don’t dare stop when I am writing, if I did, I know without a doubt that I would lose my flow. My brain would just freeze up and refuse to keep giving me the words that I need. But the rest of my day, is now chilled, calmer and with a slight feeling of relief sneaking in around the edges. Admittedly, several months ago, I had started to break things down a little when I last changed my routine of what I was doing online. I had taken away all the timings and allowed myself more freedom, as my body simply wasn’t capable of keeping up with it any longer, but all the other elements of my day were tightly held onto. They were the points that I aimed for, that kept everything else running smoothly. My well thought out routines, each appropriate to the energy levels my health supplied at the time has meant that I at least felt, as though I was still in control of my life

I have lived for so many years holding onto to every second of every day with a grasp so tight, that it almost felt like I would drop off the surface of the planet if I released it at all. So for me to be able to say that this new relaxed me, is happy and content in this new life seems almost an impossible outcome. I suspect that is why it has taken almost a year from change one, to actually getting here, a here I never even knew I was aiming for. I haven’t let go of any of my principles that I believe to feel like a full and rounded person, are all still there. I haven’t let go of routine, my day still starts with the alarm and contains my work replacement programme. I still have my list of goals, those things that let me feel as though I am still making achievements daily, and that allow me to pat myself on the back frequently. I still have a basic structure in what I do, but I no longer beat myself up if it isn’t done when I think it should have been, or even more radically, if it isn’t even done at all. I still do all my checks throughout the day, of posture, mood and so on, but all of it, every single little piece of it, is relaxed. More than that, it is all now about totally working with my health, something I have always tried to do, but with a huge amount of trying to control it and that is the biggest change of all.

I guess, I knew this time would come. That somewhere in the back of my mind, I knew that the plateau that I had created and I was living on, would end eventually. I actually never originally thought that it would last this long, or would work at all, but I did it because I was convinced that working had kept me as well as I was, and losing it, would be the end of me. When I worked in the office, the only break I took from 4:30 am through until 3 pm, was to have a cigarette, that was it. Even when I came home at 3 pm, I was still working as I was all weekend as well, as I believed that I had to be an old fashioned housewife too. Not to mention that I was on call 24/7 for problems in the office, which there frequently were. Becoming housebound, change all of that, work went on but the hours changed and how I worked changed as well, the first signs of relaxation appeared in my life for the first time. Each step-down has been forced upon me, until now. This one doesn’t feel forced, this one feels natural, a progression that had to be. My life has reached a point where this is the only option, but it’s also the right one. Somewhere inside me, my brain and body have actually met, they have spoken and they are in agreement, not something that I am used to.

So here I am, a relaxed and calm person, who is happy to go with the flow, rather than trying to make the flow go with me. I have adjusted, accepted and admitted, that my wheelchair is my future and my lungs can’t work without a regime of drugs to support them. There will be days still to come when I will kick out, scream and complain that it just isn’t fair and it’s totally not right, but there is also a calmness that I recognise when acceptance is in place and grief is coming to an end. I’ve felt it settling over me in the past few days. I’ve heard it in my writing and I have seen it in my daily actions and reactions. It wasn’t just the loss of mobility or the need of support for my lungs that was hurting me. It was also what I suppose is an inner knowledge that unlike the past, this isn’t a new plateau, this is, at the best, a gentle slope. From here on in, it is going to be a case of more and more drugs, more support, more help and more aids. All will become part of my life, because my body can’t survive any longer alone. Being Supported, is a huge step to accept and adjust to, I know I am at the very very edges of it, but it has started and there is no going back.  I know inside that the future I once saw away in the distance is closing in on me. Just as I said to the MS nurse, I’m not quite at the point where I need outside help, but it’s not far off, neither is that future. Yet even last night, for the first time, I found myself in the bathroom, trying to work out where the best point to put a grab bar to help me get to the loo would be. That is a major change in me, I am accepting all the things I once swore, would never happen until there was no other option possible.

It’s like I can feel my body changing, becoming weaker and not as able as it was just a couple of months ago. I am changing, I am becoming a different person in so many ways and I no longer feel like or believe there is a good enough reason to fight it. I might not need that grab bar today, but that too is a day that is getting closer, I can feel it. My life in the past couple of months had already changed, I just needed a chance to catch up with it, accept it and in an odd way welcome it. You have to say “hello” and introduce yourself to every new phase. It’s the only way you can ever settle to this new friend, as if it’s not your friend, it will land up being your enemy, something that never works for any of us, regardless what we might think. We may not ever love our health, but we do need to befriend and work with it, if we want it, to befriend and give us, a break occasionally.

Please read my blog from 2 years ago today – 26/10/2013 – Life changing dreams 

I had so many silly dreams when I was child, you know the daft idea that come from nowhere and are created to make something better out of what reality was. My favourite was that I wasn’t my parents child at all, I was the daughter…..