It’s still there

Posted on June 23, 2016 by livinginalimitedword

It seems that with every day that passes, things are changing in my life. It’s not just the physical changes, the things that are clear to anyone reading my blog, but it’s also the psychological and emotional effects of all that is happening. I am having to adjust at breakneck speed, as each thing that happens, just hasn’t allowed me to assess and work my way through it, before the next issue, screams it’s way into my life. It has got to the point where I don’t even feel that I am even reacting to anything for at least 24 hours. I appear to just accept on the surface but then, bang out of nowhere, the next day I crumple inside and truth of it hits me. If there wasn’t enough going on, I have invited another to join all the mess that is now me.

It struck me over the weekend, just how ridiculous this thing I have about Adam seeing me naked, really is. Yes, I can and have, given many reasons over the years I have been writing, but none of them make it right. From the fact that I can’t stand the sight of my own body, right through to the biggest fact, he hasn’t seen me naked for at least the past 12 years, possibly longer. Like many marriages faced with all the issues that conditions like MS causes, sex became something that simply stopped and has never started again. At the start, it was because of our joint fear of the pain that it caused and was compounded when my libido totally vanished. Naked wasn’t required, something that as my weight rose once I because housebound, I was grateful for. When it became clear that I wasn’t coping with things like having a shower, I chose to have a carer, rather than Adam seeing my decrepit body. After only three showers, the fact that I don’t have a problem being naked with a complete stranger, it started to wonder around in my head, just how wrong the whole situation was.

I have put myself through total hell recently about the whole thing and just when I was coming to terms with it, those tumbling thoughts, started to ask, “Then why not Adam?”. I was totally shocked the other evening when a similar collection of words, tumbled out of my mouth. I knew Adam had accepted the situation, but I also knew that it hurt him, and hurting him, isn’t something I like doing. I had started the conversation, and I also knew that I really meant what I said. I want to get past this, to be able to feel comfortable naked in front of him. There are so many reasons for wanting things to change, but what had brought it home to me, was the other night when I wet the bed. It had shown me that there are a lot of situations ahead of us, where I might be forced into that situation, and I honestly fear reacting badly, or not being able to cope with it. I don’t need anyone to tell me that it’s stupid, I fully understand that, but when it comes down to emotional reactions, you don’t need me to explain how unpredictable they are. Add in the damage that has been done to my brain already, and as time passes will be done again, well, we really have to somehow get past it now, while I can still be rational about it all.

How we go about it is the biggest question that neither of us fully answered. Adam suggested that I continue with things as is, but the next time that dye my hair, that then, he should wash the dye out for me in the shower. I dyed my hair last week, so we are looking at maybe 6 or 8 weeks time. I think his idea is that gives me time to think and time to get used to the idea. I agreed, but I fear that it is still a case of nothing to everything in one quick act, and it could make things even worse, and hurting Adam even more. I have so much running around in my head just now, and I just feel as though what I have done, is to give myself yet another one.

I spent the afternoon yesterday, sorting out some of it anyway. I have found with ease some pads for the bed, that apparently, will hold up to 3 liters of liquid without leakage, plus they are washable. So I have bought two to start with, I hope that I won’t need more than that, but they are on the way. I also bought some underpants or knickers depending on where you live. I haven’t worn any for most of my adult life and when I did, it was just a g-string. Until a few weeks ago, the leakage that I had, was very limited and of the nature of few drips, rather than enough to wet my clothes. I have been using pads whenever I have been going through bad phases of it, without proper knickers which yes, is possible but often uncomfortable. In the last two weeks, I haven’t been without them, but I couldn’t go on like this forever, so I decided it was time to join the rest of the world and wear them. It is all beginning to add up financially and all because I’m not well. I’m hopeful that what I have bought, will see me through until I see the continence team.

When I spoke to my doctor the other day, I discussed what had been said to me when I was at the hospital. He hasn’t received the letter as yet, but he put my Morphine slow release tablets up from 70mg to 90mg twice per day. I am only on my second day of them, but they are really making a difference, the discomfort that I have lived with for the past three years, has been reduced to a more background level, rather than driving me nuts continually. It has also reduced the pain levels throughout. The feared fog or grogginess just isn’t there. If anything, I would say that I am that bit brighter, which if you think about it, makes perfect sense. So at least today, I can end my post on a positive note, something I fear has been missing in the last couple of weeks, as I have often said, the good is there when you look for it.

Please read my blog from 2 years ago today – 23/06/2014 – Not an answer, but it helps

My body feels like a wound up spring that want to explode but can’t. It took me nearly 3 hours to sort out the overnight tweets, nothing odd there but I was finding it harder and harder as every minute passed to use three keys on my keyboard, Ctrl C to copy the name, Ctrl V to post them onto my spreadsheet. Each time I did it I felt as though all I wanted to do was scream loudly, not out…..

Waiting for relief

Posted on May 27, 2016 by livinginalimitedword

I found myself in so much pain the other night, that I quite honestly didn’t know how to stand up. I know that is one of those statements that sound almost flippant, “I couldn’t stand up”, but honestly, I couldn’t. There it was, a pain that when I tried to stand stopped me from pulling myself upright. I wasn’t even what I would call stooped, as the best I could do was to obtain a semi-sitting position, just without the chair behind me to account for the somewhat odd position. Luckily, I only had to take the few steps needed to sit in my wheelchair. It was a pain like no other I had felt in my lower stomach. I wasn’t in any doubt as to its cause, it was coming from my intestine and it was the pain of something moving incredibly slowly inside me. I had in fact first felt it 24 hours earlier, just not in that position, then it was just pain, now it was debilitating. It was far more a case of the position, rather than the level of pain that was stopping me from standing upright. I felt as though, not only my insides but my entire abdomen that would split if I tried to push myself any more upright than I was. Whatever my guts were trying to shift, it was struggling once more, thanks to the muscles that my PRMS had rendered useless long ago.

Luckily for me, Adam had stood up quickly and left the room ahead of me. It was bedtime and I really hate Adam seeing me in that amount of pain, my wheelchair made it easy to disguise, as soon as I was sat again, there was nothing on the outside to be seen. Even on the inside, the pain subdued dramatically, clearly it was all about position, so sitting it was. From that point on, he wouldn’t see me trying to stand, so it was purely my problem. I also knew from experience, that it is the sort of pain that only lasts at most a couple of hours, but will appear again, once the stool has shifted to the next point, where my muscles can’t shift it, and so on until I can dispose of it, which luckily, is usually painless. I also knew from experience, that the stress that was already building about going to the hospital the next day, wasn’t going to be helping me much either.

Just before we actually left the house the other morning, I took a morphine booster. I had woken that morning in pain and I knew what lay ahead, not the disaster with the stairclimbers, but the normal trip is stressful enough. One of the screw ups of the transport system is that you are not allowed to bring your own wheelchair with you. All the time you are actually in the hospital, you are stuck sat on the most uncomfortable contraption I have ever sat in. A hard chair that looks padded, but isn’t, on small wheels that mean you have to be pushed by someone else, clearly not designed for sitting on for endless hours. Having a painful stomach was only going to make matters worse. I lost count how many times Adam offered to help me out of it and onto a more comfortable, in his mind, chair, but it wasn’t really the chairs fault. I was twisting and changing position constantly, he thought that it was my bum that was sore, but he was way off the mark. It would have made not a scrap of a difference where I was sat, I still wasn’t going to be comfortable.

When last night, I once again couldn’t sit still on the settee, and actually had to ask him to fetch my morphine for me, I got around to explaining what was up with me at that moment. Whenever my guts are this bad, it has a habit of triggering pain from my gallstones. On the whole, they really don’t bother me that much, but last night there was an added pain, one that I wasn’t quite able to explain to myself. When I leaned back, my gallstones caused pain in the front of me, when I leaned forwards to relieve it, I had an equal pain in my kidney on the same side. I should have done then what I didn’t until this morning, read up on what they symptoms of gallstones are. I already knew most of them, and on most sites, they told me just what I knew, then I found one that said the pain can shift into your back, and they can cause heartburn as well. Something else that I have had a lot of recently and couldn’t understand why. Even though I had taken the 10mg of Morphine that Adam brought to me at 7pm, it took right through until about half an hour after I had taken my night time meds, which included 70mg of slow release Morphine and 1200mg of Gabapentin at 8pm, to start to feel anything near comfortable. I know that most people would have been calling an ambulance if they were in that much pain, but I’m not most people. I’m used to dealing with pain, so this didn’t phase me as much as it would most, but if you still don’t understand why I didn’t call, well read my last post.

Pain doesn’t really upset me any longer, it is one of those things that the longer you live with it, the more use to it you become. In fact, I have noticed that I don’t take nearly as many of my Morphine boosters now, as I did even a couple of years ago. It isn’t because the pain is less, it is more that I can now deal with it better inside myself. Once you realise that not even that level of pain is going to kill you, well you breathe through it and wait to see what happens, if that fails, then you wait for the tablets to work. I frequently find myself putting up with it for a couple of hours, before the idea of a taking a tablet appears. When the pain is in my stomach, I am more likely to take an anti-nausea pill than I am to take anything else. As the pain has become worse, so has the nausea. Hardly a day goes by, that I don’t find myself feeling like throwing up, or with a mouthful of sick, that has suddenly appeared. It doesn’t matter how much pain I am, feeling sick is something that always gets more of my attention and far faster.

I am still waiting for my appointment with the Gastro consultants, and after the problems on my recent visit, I am quite honestly in two minds about going. Yes, that is how much it has affected me. Adam told me the other day, that the appointment is next month and that it is at 11:45. If he can rearrange it to an appointment between 9am and 10 am, then I would feel far happier about going. It is a fact that we have learned over the years, the earlier you can be there, the sooner you get home and with fewer the problems. It makes sense if you think about it. We have had to endure several long and tedious waits for a four man crew to be free, as the stairclimbers have stopped working. The earlier in the day you use them, the more likely you are to have a smooth trip. No matter how much pain I am in, or how many times I have to eat extra tablets, I don’t want to go through another horrendous day like the last one. I am quite honestly, no longer up to it.

Please read my blog from 2 years ago today – Understand OK

It seems the slower I get the faster my life is moving, just a couple of months ago I was really impressed and blown away when I was receiving between 80 and 100 new followers a day on twitter, I said then it had taken a sudden upturn, well it has done it again, with over 200 new people joining me daily. I am always tempted to sit and analyse the people who join me, but I fear if I do, that I will start to make changes to what I do, in an attempt to please more…..

Instinctive training

Posted on March 4, 2016 by livinginalimitedword

The first set of grab bars arrived yesterday afternoon. I have to say that I am rather pleased with them, even though they are just the suction cup type, they aren’t as unpleasing to the eye, as so many that I have seen. Of course, they still appear bulky, but they are at least firstly chrome coloured and have soft black hand grips centered on each bar. It wasn’t just there look that made me buy them, but the fact, that beside each suction cup, there is a tiny indicator which changes from green to red, should the suction not be tight enough. Like a lot of shower units, ours has two glass walls and which are, of course, the best position for hanging things like our body puffs and so on. We are therefore perfectly used to hearing the hooks giving way and clunking into the shower tray. The ease that suction cups give way had worried me from the first time I heard that such type of grab bars existed. The image of reaching out to use one, and crashing to the floor, with it in my hand, had entered my mind more than once. I’m hopeful that the indicators will mean this just won’t happen, but only time will tell.

It doesn’t matter how much you know you need these sort of adaptations to your home, it is actually a really big thing, to have to buy them and as I know, even harder to actually let yourself use them. I know that it took me several months, to actually fold down and sit on the shower stool for every shower. Even now, on a good day, I will stand for part of it if I can. No, this isn’t just about ego, it’s about so much more. In the case of having a shower, it has a great deal with how you shower. The routines and habits that you have learned over the year. Sitting down and cleaning yourself, isn’t as easy as you might think, especially when it comes to your back and well, obviously, the area’s you are sat on. Unless, you want to be constantly standing up and sitting down again, which is tiring and in itself dangerous, you have to break habits and wash there first, before sitting. No matter what you do, you still have to stand and rinse yourself once more while standing, to be sure all the soap has gone. At first, the seat seemed more a hindrance, than a help. Not only was sitting in the shower, just wrong, it did on top of all of this, hurt my ego. It’s a tool, and just like a walking stick or a wheelchair, you have to adapt to it and that always takes time. Without a doubt the bars will make showering safer, but, I will have to adapt, again, into using them.

Like most people, able-bodied or disabled, I have my own fair share of gizmo’s and gadgets that I have aquired, think they would make my life easier. Like most people, the majority of these wonder objects, have been packed away, never to be seen again. Aids are just the same. If they don’t work for you, if you don’t like them for whatever reason, you don’t use them. My first piece of advice I would give to anyone who has decided they need something to help them, is to look for not only the right aid, but the way that it looks. I know that we all need to look at price these days, but if the difference between the one that will just do the job, and the one that your like, is small, go for the one you like. That’s another one I have learned the hard way. It makes no sense what so ever, buying the one that will do, if you land up hating it and not using it. Yes, for £5 less each, I could have bought plain white grabs for the bathroom, but every time I entered the room, I would have cringed. I would have hated them so much, that I would have died everytime a visitor asked to use my toilet. It’s also a fact, that the more you hate something, the less likely it is that you will use it. I would also have seen the one thing I have fought hard against, a hospital. This is my home and it has to look just like that, a home. Trust me, a grab bar, isn’t a grab bar if you totally hate it. No, I don’t love them, but I don’t hate them either.

Years ago, even before I was diagnosed with Fibro or PRMS, I developed a habit that few noticed, I always walked close to walls. No, I wasn’t shy, I knew there was a problem with my balance. There was in my mind a safety in being a wall-hugger, I still am as it’s now an instinctive action, one I that developed after a few embarrassing falls. On bad days, I dreaded having to cross any open space, being outside and worse still having to cross a road, was a total nightmare. The doctors kept telling me I was fine, but I knew that I wasn’t. Back then, I had clear good days and bad one, unlike now when healthwise, it’s only bad. Back then, I also always had some notice, I felt it building and I knew pretty much, when I was safe or I wasn’t. It wasn’t my legs, they worked fine most of the time, and balance issue are quite different. As time passed, the good and the bad blurred and the walls and furniture developed a permanent magnetism for me. They became part of my instinctive life. I had learned their value and the safety they offered me.

It doesn’t matter how much of a problem your legs are, or even your balance, if you have spent your entire lives using them, that is still what you expect to be able to do. Doing something like standing up, or walking is an instinct. If you can take one step unaided, no matter how dangerous, you do it without thought. I know every single time I stand up, I am now in danger. That doesn’t mean that I have the brains to hold onto something that is there, just in case, something goes wrong. Because of the way my legs fail, I should. I should never move without holding onto something or being in my wheelchair. I know all that, but instinct is a truly hard thing to fight. That first or second step that I take can be the very step where my legs just vanish from under me. When they do, it’s too late to try and reach for the thing that’s there to save me. I’m already on my way to the floor, and too far from what was there to save me, to hold me up and allow me the time I need to recover. Yet still I take those steps, the steps I have to take, between one chair and another, and where are my hands, well not where they’re needed to save me. Instinct can only be broken by training, repeatedly training, the training I frequently forget to do.

Becoming disabled due to a progressive illness, isn’t like flicking a switch. It’s slow, so horribly slow. In my head, I can do anything, I am still the person I was when I was 20. Unfortunately, there isn’t a single part of me outside the tiny part of my brain that thinks, that is in fact, anything like what it was when I was 20, or as when I was 30 or 40, or even last week. My problem really is that tiny part of my brain. Someone could arrive here tomorrow and install, tastefully, it would have to be tasteful, ever aid I might ever need and the day after, I probably wouldn’t use a single one. Trust me, it would be exactly the same for you. We don’t think about what we are doing, we just do it. It isn’t until the second something goes wrong, that you even think about it. I long ago stopped counting how many times I have found myself on the floor. Not even the knowledge that once I am down there, and there is no way on this planet I can get back up again unaided, changes nothing. Nor does the number of bruises or scars I have received. Just like a child, I continue to act as though nothing has happened, not because I am stupid, nor my ego, but simply because I am human.

Please read my blog from 2 years ago today – 04/03/2014 – Unsolved problems

I didn’t sleep last night as well as I could have, I kept waking because of the pain in my back. It’s a pain that appears from time to time, I think because I always sleep flat on my back, not the position that most people seem to. Years ago I know I went to sleep on my side and once asleep I rolled to my back, but the bed also showed that I did move around a little, these it shows I don’t move a……

Which is worse?

Posted on February 26, 2016 by livinginalimitedword

You would think that after all the years I have spent living with pain, that I would by now be used to it. Well, I am. I’m used to the pain that comes from spasm. I used to the continual ache of muscles, that no longer have the strength, to do beyond the most basic of the acts they were formed to provide. I’m used to neuralgic pain that flies through my body, without limit. I’m even used to the pain that my intestine like to cause continually when your talking of the endless ache, or even those sudden breathtaking moments, a pain simply caused by internal movement. Even the lock downs that take my breath or limits the size of each one, but somehow, this time, is different. This is no longer everyday pain, but it is now every day pain, pain without a break, or a rest, a pain that giving me no peace.

I am getting so fed up with this pain. Despite everything that I have done, everything that I have tried, and yes, going to the loo daily, I am still in pain and one that is for some reason, getting sharper and stronger. Even last night when I woke to go for a pee, the second I moved, the worst of the pain came straight back. I was up for less than ten minutes, and by the time I returned to my bed, every second of my rest had been undone, as even the unexplainable sharp pain I have in my side, that goes deep into my lung, was there. Normally, it doesn’t appear until I have been up for several hours, but not today. Probably, because I was so aware of all of it, I returned to only a light sleep for the remaining hour and a half, so now, I’m tired as well. My abdomen no longer feels like it is going to explode. The furosemide is doing it job and removing the excess fluid from my tissues, so yes, my stomach is still flatter and the pressure is less, but the pain is worse. It’s almost as though, that stored fluid, was acting like cotton wool, dampening my perception of what was really going on.

It is all too easy to acquire an attitude of, pain is pain. Every day that you live with it can become, just another day. In fact, in many ways, you have to. If you spent your time reacting to and being worried by, every pain that you felt, you would literally go mad. PRMS, and I expect, many other chronic illnesses, produces pain. Just as I said yesterday, that attitude of “I’m fine” to my general overall health, well it’s just the same with pain, normally “it’s just there”. Then occasionally along comes a new set of pains, ones that don’t belong, ones that don’t quite fit the norm. So what do you do, when it’s more than “just there”. Well, you do all the things you’ve learned to do. You take those painkillers, the ones your doctors tell you will help. You do every form of relaxation that you know of, and you tell yourself, “it’s just there”. Of all of them, oddly, the final, is the one that calms your mind the most. For a person who hates liars, I have over the years become quite proficient at them, as I seem to have also learned to believe them, at times.

I have never asked one, but I bet, doctors hate our pain just as much as we do. In a “normal person”, pain is a sign that something is wrong. In us, it’s a sign that we’re still alive. I may feel useless against this pain, but I’m sure my doctor, feels even more so. Painkillers don’t kill pain, at best, they dampen it. They bring it down to a level where we can carry on, get on with our lives, and tell ourselves more lies. Worse still, we tell our Doctors the same lies. I’ve heard myself doing it, letting the words, “I’m fine” or the equivalent of “it’s there”, rather than telling him the full truth. Why do we do it? Why do we say, that it’s better, when in fact, the better is tiny, and what we wanted was huge? If I have done it, then I can only guess that other have too, and we then wonder, why the drugs we have, don’t work as well as we’ed like?

No matter what I have done, it is now a full week since this pain changed, stepped up, whatever you want to call it. What was once an ache, now has sharp corners and because of their position, all I have to do is move, and they tell me they are there. Is it any surprise that I am fed up with it? That today, just like yesterday and the day before, all I want is peace. I’m fed up and I’m feeling useless, and I’m not sure which is worse. I haven’t known pain like this or as persistent since I was giving birth to my children. Which is, in fact, a rather fitting description of it. Just like childbirth, the worst of the pain comes in waves, but unlike childbirth, when a wave hits, it’s there for several minutes, anything up to fifteen. Also unlike childbirth, when one of those waves hit, the pain radiates out and can reach from my shoulders down into the tops of my thighs. I quite honestly, feel as though I have been in labor for over a week now and with no sign of it giving up. The mornings do seem to be less intense, but as the day goes on, it just gets worse and worse. By night time, I honestly don’t know what to do with myself. Lying down, helps, and if it wasn’t for my inbuilt off switch, I don’t know what I would do. Sleep is my glorious escape. I honestly don’t know how I do it, I wish I did, but no matter what, I go to sleep and I stay there until my bladder can’t stand it anymore.

I spoke to Adam last night about my idea for the chart, and he agrees, as it will only take seconds, that going forward, it is a good idea. So today, I have made my first entries. We decided that just doing it once a day, is all that is required, just enough to give a noted point. I have, though, changed my mind about the point in the day that I am going to do this. Yesterday, I thought that the point in the morning when I take my meds might be best, but when I take my meds, they include all my inhalers and they are going to give a slightly warped result. So, I have plumped for midday. It will fit well with everything that I do online, and isn’t going to bit into anything, and shouldn’t be affected by my drugs.

Please read my blog from 2 years ago today – 26/02/2014 – Don’t talk to me

I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head……

Getting it right

Posted on January 2, 2016 by livinginalimitedword

I lost my right leg last night, we were just watching TV, and the whole thing suddenly died from knee to toes. Compared to last week when I wasn’t able to find a single of part of me that felt normal, I’m not complaining. What made me mention it, was the fact it was to totally numb and went suddenly. I’m used to it normally going slowly from a single expanding spot, but last night, it was fine one second, the next it was gone. I guess it could say it has learnt a new trick, in time for the New Year. In general, getting that deep nights sleep did make a huge difference and it is a trick that I am going to hold onto, just in case, it’s needed again. I wasn’t doing it totally in the blind, as the day before I had taken a booster during the day and I noted then, that the sensations eased off, they didn’t stop, but they did turn down in intensity. I am wondering if part of the problem, is that my painkillers aren’t holding everything as quiet, as they have up to date. It has been quite a while since they were last increased and I know better than most, if you are constantly fighting, even with low-level pain, you get tired. It doesn’t just wear you down during the day, but it also means that you don’t sleep as deeply, which isn’t something you can’t really measure, other than by how you feel during the day. Get tired, which I have been now for ages, and everything else steps up, making life miserable. It might well be time to ask for a 10mg increase on the slow release Morphine, as the last time I increased it by that amount, life changed totally for me.

I don’t know if you would call it a healthy respect, or just a plain reluctance, but I never race into increasing or changing my medications in any way. I know that some people just take and take, with only one thought, to try and make their bodies feet just as it did before their condition began. That to me is not the best route. If I had been doing that since I was diagnosed, god knows how many drugs, I would be taking now. I, without discussing it with anyone, have cut out and ditched about half the drugs that all my different Doctors have prescribed for me, at different times. Every drug I have ever been given, I have tested, not just when I first started them, but at odd occasions from then on. If I didn’t feel it was doing what I expected, I would stop it for a while and wait and see exactly what happened. This is not something, I recommend that anyone does, I have chosen carefully the drugs I have removed, none has been life essential, nor condition altering, just symptom suppressing. I noticed, that every time I complained to my doctor that I wasn’t getting my expected result from taking them, all they did was up the dose. The first one that I stopped was one that was supposed to keep me awake. After about three years of taking them, I suddenly found that I could take it, and go to sleep within the hour. I simply wasn’t happy about adding yet more, of what in effect was “speed” into my system I stopped it and absolutely nothing changed. I didn’t feel different in any way, so I could see no point, in taking their ever increasing dose, when the one I was on, far higher than the insert suggested, did nothing. It has prompted me to test others as well over the years. At a guess, I would say that I have halved the medications they would have otherwise continued to prescribe, they weren’t doing me any good and were just costing the NHS money.

I know that my body is a mess, and I can’t see how, it helps to fill me with chemicals that do nothing or little. The drugs I am on now, are drugs that I need and work, but I still have a reluctance to increase anything, before I reach the point, when there is no other answer. Chemicals can help, but there is no way, that there isn’t a price to pay at some point. Right now, my body is tolerating them, appreciating them and working with them, which is just how, it should be. I know that on the scale of things, the level of Morphine that I am on isn’t that high, but, I don’t know how many years I still have to go, or how or what my body will throw at me. Addiction doesn’t come into it the equation at all. Why would it? I’m in the closing phases of my life, if I get addicted to anything, well it’s not going to matter, as there’s only one way that I will ever come off it. All the medical profession can do for me, is to keep my pain levels at bay. I know they can’t take it away, and that I will never, not even for a minute, be totally free of it. As long as it’s at a level where I can live with it, then that’s all I ask.

Chronic illness is all about balance. Activity, enjoyment, drugs, sleep and hope. You have to have them all, and you have to decide for yourself, how you want that balance to sit. It’s personal, not medical, and that’s something a lot of people forget. Our doctors are there to help us, look after our bodies, not to control them. It doesn’t matter what the medical books say, or those people who read them, think they say, it’s up to us, to interpret it all including how it all makes us feel and to control our health. Personally, as I’ve said before, I listen to my body, I know it and I know quite quickly what it likes and what it doesn’t. So far, I don’t think I have done too badly in actually living with PRMS, COPD, Fibro and a list of many other more minor conditions. This is the start of year 15 post diagnosis of my PRMS, 15 years ago, I didn’t think, because of what my doctors said, that I would be here today, yet here I am. This the start of year 3 post diagnosis of my COPD, 7 more to go, if the doctor is right, but I still think, that it’s all up to me. I’ll keep listening to all and anything that might help me, but it’s all up to me.

Please read my blog from 2 year ago today – 02/01/2014 – Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used…..