Not quite beaten

I can’t believe that I am still struggling after my activity the other day. The way I feel right now, is more the way I would expect if I had had a day out at the hospital. Being tired, I know is just part of my life, but no matter how I change the amount of sleep I have, or what I do in the day, recently, I’ve been even more tired than usual. It started a couple of months ago, but add in the effect of the increased Gabapentin and I am in a lose, lose situation, even before I added in excess activity. If l let myself, I don’t have the slightest doubt that if I went to bed right now, that I would sleep. With the new wake up time that I have, I thought allowing myself a straight eleven and a half hours sleep each night, would help me feel more awake. It appears though that the opposite is happening.

There are so many things that come with our health, just like the above, that leaves us sitting scratching our heads. Health often has one huge issue that we ourselves forget, it’s not always logical. Which basically means, there will always be elements, that will inevitably do whatever they want to. I have managed so well, until this point to control my energy levels. I’ve been ultra aware of my energy usage, tightening up on my bunching of activities, never just going to the kitchen for a drink, but going to the loo, cleaning my teeth and anything else I can think of, at the same time. I use as little energy as is possible, so, that I can complete everything I have to in a day, and not fall asleep in between each step of it.

Yesterday, I started wondering if I might have become lax, not paying enough attention to what I was doing. There was only one thing that came up quickly and stood out as an energy waste. I hadn’t realised how many times a day, I have to stand up, just to change the channel on the TV. No, I don’t have an incredibly old TV, just incredibly bad eyesight. To be able to read the names of the programs in the listings, I would need binoculars to see them from here. So once every hour, or more often, I am pushing myself to my feet, wobbling my way around the desk and out to the edge of my wheelchair, so I can use the remote control, then back again. It’s a total distance of fourteen feet, seven there and seven back, but the strain on my body, both arms and legs, clearly adds up. If I could change that alone, I believe, I would change a lot about how I am feeling.

I did look into this last year, but I was left once again with a problem. The solution seems to be an HDMI cable, running from the TV to my computer. Apparently once I instal that, I could see what was on the TV screen while sitting right here. Sounds simple enough, except, I can’t find out if I have and HDMI connection on my PC. So do I just buy a 15-foot cable and hope that one of the slots I can find is the right one, or just buy some binoculars? I was never one of those people who ever bothered about the media side of my PC, it’s not what I bought it for or was interested in and my brain just doesn’t want, to read any more stuff they call “help”, it just switches off and sleep becomes, even more, appealing. Why has life become so complicated? I thought it would be quiet, sedate and relaxing being housebound, it isn’t, it’s one small problem, followed by another. Most of them, like this, were never on my list of changes I ever thought that I would have to make.

I used to think that tired was a state of mind. That all you had to do was, give yourself a hard kick in the backside and get on with it. I did that for so many years, that I never even thought about it. This type of tired doesn’t work that way, it just drags you down and down. It does it because it’s not tired at all, it that monster called fatigue. Yes, I’ve adapted over and over to keep it at bay, to stay with my head, just above that line that says, “you’ve lost”. But, right now, I can hear it screaming at me, “Just stop, do nothing”. I can hear it, but, I don’t want to listen. I want to keep going, I want to keep living and if I stop, then what. Just occasionally, I try it, I do, I stop. It never lasts as I still have that other voice that says “This needs doing, get up, get going”. I fear, that if I totally stop, if, I give in for just one day, that I will disappear, cease to be me, and become, that invalid that I fought so hard, not to be.

I know fatigue, I meet it face to face at least once every day. Some days like today, it wins in tiny ways. In those gaps that I can’t explain. Those moments, that I find myself staring into space, with nothing in my sight and far less than that, in my head. I’d be happy to just be tired, to just be in need of sleep. Sleep cures nothing. It’s an escape, a place I go where there is nothing that needs doing, nothing that has to be said and the biggest blessing of all, I feel no pain. Yet, it steals so much of my life, I am wasting the time I have, by sleeping, that just isn’t right. My life is limited, to spend what’s left asleep, no that just isn’t right. There are things we can change, things we can adjust to make our life easier. Then there are things we want to change, but fatigue takes over, gets in the way and means everything stays the same. I’ve been here so often, that in some ways, it’s like an old friend returned, holding onto you tightly and tempting you fully, into its grasp. Fatigue is a well groomed and well-trained seductress, and I am ever weakening, messy human, what chance do I, or any of us, really stand.

So I will rest, I will tweak and adjust, and hopefully once more I will be restored, at least for a number of hours. There are no answers to this, because, there is no logic. Activity is a tiny factor, medications another, but health, is the biggest and there are no answers to that. I just have to find my way out of this pit, to climb back higher about that line and stay on the side of winning. A nap, another nights sleep, who knows it might just make the difference, this time, only time will tell. All any of us can do on a bad day is look to the good, and hope, that is what tomorrow will bring. You see, there is one weapon, one tool that fatigue doesn’t have, it, unlike us, doesn’t have hope.


Please read my blog from 2 years ago today – 30/01/2014 – Truly care

I have taken my first HRT tablet this morning, so now it’s a case of wait and see, not just on the hair situation but also to see if I feel any changes in my MS, the more I think about it the more sense it makes that there will…..





Who knows

I don’t know what has been up with me this week. I feel as though I am struggling, but why, or even, what specifically is making me feel that way, I’m not sure. It’s not as though anything that has happened, or any of the symptoms that I have been battling with, haven’t existed before. Yes, there has been a lot of times where I have felt buried beneath a mountain of them, but even that isn’t really new. For some reason that I can’t actually work out, I am struggling. I hate it when I can’t put a smile on my face that feels totally real. I hate having to put one on there, that feels even slightly fixed, but I have to. I know full well, that no one’s standing over me, telling me I’m a misery guts and to get my act together, other than me, but we are our hardest critics. I am the only person on this planet, who is pushing me to be happy, that’s stopping me from falling into bed and not just staying there, something I think I could do with ease. I don’t think, there has been one single evening, when Adam hasn’t double and triple checked, that I’m OK because, he knows full well, I’m not, and I’m just putting a face on. Just as there hasn’t been a single morning, where he hasn’t left me for work, without giving me one of his quizzical looks. I don’t answer his word or his looks with total truth because I don’t actually know what it is. Everything, just feels wrong, and what does that actually mean?

I know that this damned numbness is getting to me, but that isn’t enough, to make me feel or act the way I have been. Yes, I would dearly love to know exactly where my lower limbs are, rather than just this dead heaviness hanging below my knees, and to not dread sitting still for a second as the numbness will spread and grow, but numbness isn’t enough to make me fell overwhelmed. Nor is the pain that has snuck into its core and is at this second is living wrapped around my bones. It feels like the trigger as it is from the pain, the numbness emerges and spread in every direction. Yes, I have found the start point, it took me time to work it out as pain is just a normality, not an oddity. What starts the pain, well that’s still a mystery, to work that one out, would mean working out what causes PRMS. My hands now feel so swollen that even the fact that my rings are still spinning in circles is getting really annoying. I have lost count the number of times I have fixed them in the past hour, then found myself staring at what should be fat fingers in disbelief. Clearly my sensory system is working overdrive as if it isn’t numb, it is telling me it’s itchy or cold or worse still on fire. Every part of me is alive in some way or another that no one, other than me, would accept as normal.

Every morning this week has been the same, as it along with the last hour of every day, has been the time when I have felt most keenly that life is getting tough. I do everything that I can to do all that I need to, if not in tightly timed pockets as I once did, at least within a reasonable scale to the rest of the day. There hasn’t been one morning this week where that has been achieved, not one. Somehow, the hours have flown and as suddenly as my day started with the alarm, the hour of 1 pm, has arrived. Six hours were I don’t feel as though I have stopped for a second have passed and every day, I am behind, not finished and happily fetching my lunch. Yesterday, it took me right through to three o’clock, two whole hours, that I have no idea where they have gone. I know without a doubt, that I am typing slower as the pain in my hands has been a hindrance. I also know that my concentration has been thin and I frequently seem to be staring into space, but, is that all enough, I don’t think so.

My intestine has been tight and pressing into my diaphragm every day this week, and every day, which is far from normal, I have actually moved my bowels. I did increase the dose of Psyllium that is in each of my pancakes, as I had let it slip to so little, that it was having almost no effect. I know it always takes me a few days to settle to any change in dose, so the pain increase and the pressure increase is around what I expected. The odd bit is, this dose is exactly the amount that I took before and actually caused an improvement from the day I started on it, but I suppose this is my body and not having the same effect, isn’t that surprising. I know when our internal bodies are upset, that it can have a huge impact on everything else, but for some reason, I don’t believe this would cause this feeling of struggling all the time.

I am not the kind of person who would normally huff and puff at having to do anything, but I feel as though almost every action has a prelude of maybe not an audible one, but at least an internal one. Everything from taking a drink, to having to go to the loo, is just too much effort. It’s not as though I have lost my enthusiasm for life, that is still very much here, this is a physical. Every action requires energy and it’s that energy that is missing, not the one that want to do it, but the one that has to do it. I know that this sounds somewhat iffy, but it is almost as though all these newly heightened and extensive sensations are draining the energy I have. Is it possible that nerve activity can make you tired? I know they can psychologically affect us, but can they also physically use up energy? Is it possible, that the fact my legs are numb right now, that that very numbness takes energy to create it, rather than just as I thought just a mixed us signal? Feeling worn down, is very different from feeling as though you have nothing left to give. I don’t feel as though I have the energy to get through today, I will, but it will be a series of struggled through hours, rather than a day.

What our bodies do to us is a mystery to even our doctors, I am totally sure if I were to place this in front of my Dr and say, “what do you think?” the answer would be, “It’s possible”. If there is one thing that they say more than anything else to me, it is “It’s possible”, what kind of an answer is that? I know what kind of an answer it is, it’s non-committal. It’s like everything else they say about PRMS, “Who knows?” it’s as sure as anything, they don’t. If there is one thing about this illness that annoys me more than anything else, it is all these unknown factors. I know for a fact, that I am in a tiny group, just 5% of MS sufferers. I also know for a fact, that not once have I been asked to trial any drug to see if it helps or not. All I have been told throughout is that this, or that new drug, won’t work for me. How many PRMS patients have they tried it on? Where have they found enough of us, to be sure? In the now nearly 4 years of being on Twitter, I have only found 3 others. Thousands with MS, but only 3 with PRMS, I just can’t see where they are all hiding. To me, before you can cure something, you have to know everything about that condition as there is to know. If there is a single question that they have to answer with “It’s possible”, then they don’t know enough. It doesn’t matter what you own chronic condition is, but if your specialist has to answer just once, “It’s possible”, then question everything. To be fair, I doubt there is a single condition out there, where that phrase isn’t used at least once to every patient. But that kind of confirms my conclusions, unless every single one of us, are part of any ongoing research, their research is flawed.

I believe, that almost every single one of us has been more than a little frustrated, by the fact that no one knows what causes our conditions and that there is no cure. In time, you see past that point and accept that it is just the way it is. To be honest, I got past that point with ease as what annoyed and frustrated me, was that no one could even give me a forecast of what my future would be. I still find it hard that they don’t know even from my current condition what will happen next. That to me just isn’t right. Being told that your condition is unpredictable, is frustrating enough, but add in that they can’t even give you a complete list of possible symptoms, that is agreed upon, is beyond a joke. I honestly believe that I know more, about PRMS than, every single one of the doctors I have ever seen. For a lot of us, it has become a case of not out doctors healing us, or even helping us, we have to do it all ourselves, which makes a total joke out of the medical profession. Don’t get me wrong, I have had some wonderful help and care over the years. But when it comes to my MS, other than eventually getting my pain under control, and tinkering around the edges. It has been a case of a diagnosis, followed by little else.

So once more I am faced with a pile of questions and no one to help me find the answers. As today, I am inside struggling just as I have been all week. There is still a smile on my face, but inside, I just want to give up, disappear into my bed and sleep until next week. That way, I might actually feel awake for more than half an hour.

Please read my blog from 2 years ago today – 05/12/2013 – Giving in is good 

I guess we all like to think that our lives are in our control, at least I always thought mine was but now I have at last admitted to myself that I am have absolutely no control left over mine. I know that sounds…..

Just a thought

There is no warning, not even the slightest one. Suddenly, I am tired. Bang out of the blue, I feel as though I could lie down and never get up again, but I know this tired, it isn’t real in any way, shape or form. If I were to go to bed, right at that second, yes, I could lie down, close my eyes and lie there for probably, up to an hour, but sleep, no way. I have known this for so many years, that I now have it nailed. If you were to feel it this second, you too would think that sleep was the only answer, but getting to that bed, would be one of the most exhausting journeys you would ever make. Your muscles would be wooden, heavy and hard to move. Every step, or in my case, every turn of my wheels, is painful, slow and leaden. Coordination is a process you are aware of, but not successful at. It is a laborious trip, one that less than half way through, you know, you shouldn’t have even started. If you are standing that danger grows, whatever you do, don’t close your eyes, no matter how they try to tempt you and they will try. It’s dangerous to close your eyes, as where ever you are when you do so, will feel like the spot you just couldn’t and shouldn’t ever leave again. As your eyelids fall, a wave flows through you, pulling you away from the conscious world, while heightening every sense your body has. Your entire body is suddenly alive and every centimeter of your skin is tingling. As darkness fills your vision, your muscles start to collapse and you are trapped between two worlds, ones which neither really want your presence. Rejected by sleep, abandoned by wakefulness and unless you are lying down or at least seated, you know, you will fall as your balance is gone.

It is right now that you long to feel an arm around you, another body that will take away the strain of movement, the fear of falling and that feeling of rejection by life, but you had better start praying that they don’t speak you. Your brain is so far away, that words are not there to be used. You feel almost drunk, but without the euphoria or that warm glow that alcohol brings. It’s not just your body that is affected, you have all the bad side of drinking, without any of the good. It is around about now, that you start to feel sick. Remember, all of this has appeared from now where, it doesn’t matter where you are, or what you are doing and there are no rules either about how long it will last. The final twist, no matter whether you go to your bed, or you stay up, you aren’t going to feel any better either way. Going to bed may seem safer, but for me, when the world is swimming and I feel sick, lying down makes things worse. Staying up, keeping your eyes open and getting on with life, is hard, but it actually is the best way to continue, as there is no winning, just waiting for it to pass, and it will when it’s ready.

I don’t know if that belongs to Fibro or PRMS, I have had equal numbers tell me over the years that it belongs in both camps. I don’t suppose that it really matters which, just that chronic fatigue exists. I can remember having spells of it right back into my 20’s, and it was one of the things that used to force me to go to the doctors looking for help. Not when it hit, hung around for an hour or so then vanished, but when it appeared and hung around for days. Almost every time without fail, I would be told, “It’s a virus, go home and rest”. When I returned a week later, I would then be told helpfully, “Viruses can take months to clear, I’m sorry theirs nothing we can do”. If one of them had just done a blood test, sent it off for proof, I might not have taken so many years to get a diagnosis, or if one of them read my notes and saw, that I constantly returned complaining about pain, well who knows. These days, well it varies, it can still hang around for days, or just an hour or so. The most common, is the sneak attack, the one that wipes me out and leaves me floored for a short period of time, maybe an hour of so, then vanishes as fast as it attacked. If what I described where to hit you right now, I know you would be totally shocked, but try and imagine, how it feels when it vanishes just as quickly. We are used to symptoms that build, that move in graduated steps, both in their arrival and departure, quite honestly, the fact that this doesn’t, is probably at first, the most distressing trick that it plays.

Like everything else, there are variations in its strength, what I described I would put pretty high on the intensity scale and almost exactly what hit me yesterday afternoon just after 2 o’clock, and it hung around until just after 4. I didn’t go to bed, as I said, nausea and lying down don’t mix well for me. I usually land up leaning over the edge of the loo wrenching at nothing. Trying to push through and attack like that though is tough. The temptation to just close my eyes and rest my head on the desk is great, but that’s no better than going to bed. I honestly think it the closing of my eyes that is the real problem. I have tried taking my antinausea drugs, but they don’t work that well on this, which just adds to my belief that it’s all tied to my eyes, not something physical. Mind you, it doesn’t stop my taking them, trust me you too would clutch at straws. The point of my writing this, though, wasn’t just to describe how it feels, or to seek sympathy, it does have a third purpose and important one.

In the UK, our government has been pushing to get those who are long-term sickness benefit back to work. If you have been reading my blog for a while, you will already know that I worked right up until 5 years ago when after working from home for 3 years, I was made redundant. Despite being housebound, I fought to try and find another job for over a year, then my health took a downwards turn and I was forced to admit, that my working days were over. I am a great believer that working if at all possible, even if it isn’t in our chosen field, is actually good for us, so in a way, I agree with them, but I don’t agree with how they have been going about it. Especially when it comes to those of us with invisible illnesses, as what your doctor and your consultant say about your health is of no importance at all. You have to attend a meeting where you are assessed by a non-medical person. I haven’t been asked to attend, but I have spoken with many who have, plus, I have kept up with the reports in the media as to what has been happening. There have been many horror stories, of people dying from cancer having their benefits removed and being told they have to go back to work, then dying without the support they should have had, within months. Equally, there have been many who have returned to work and managed better than they expected. Neither end of that spectrum, unfortunately, surprises me.

I wrote this because, I read a post from another person with MS, who had just been told, she was assessed fit to work. I don’t know, if she is or isn’t, what I do know, is she wasn’t a person who expressed herself with a great deal of eloquence. She wrote in great detail about her pain, and her difficulties with mobility, then in a handful of words she gave her version of the above. “I get sick, I can’t stand, I’m so tired, that I just want to give up. I can’t do nothing and I don’t want to. It just happens, like without warning. I can’t work like that.” I knew just what she was meaning, but if you haven’t lived with it, it sounds like nothing at all, something not worth a mention in any way what so ever. Her descriptions in writing about her condition were poor, weak and lacking in feeling. When you write, you have the time to add in far more flourish than you do in conversation. I was left feeling that she was being sent back to work, not because she was well, but because she lacked the ability to describe exactly, what her health, was doing to her, and the impact, that it had on her daily ability, to do anything. It left me wondering just how many people have been found fit to work, simply because they lacked either education or just the simple skill of how to express the reality of their lives. I have heard many times people saying that these meetings are unfair. I have also heard it said that the tests are fair and representative of what is expected in the workplace. Either way, there is one thing that is always going to be true, if you can’t express yourself, well and with confidence, you are never going to be fully understood. Everyone, even those who are supposed to be impartial, judge everyone, by their own personal standards, especially, when it comes to educational background. It shouldn’t happen, but the poorer the area someone comes from and the worse someone comes across, the more likely, is the assumption, that they are swinging the lead.

The “work capability assessment” isn’t a universal system across the UK yet, but this is a quote from the Guardian Newspaper  and refers to a study taken place in these areas, “according to a study that linked the tests to 590 extra suicides and hundreds of thousands of additional antidepressant prescriptions.” To me, there are only two people in this world who are qualified to say if I am able to work or not, me and my doctor. There are no other tests, other than those that assess us medically, that can be brought into this equation. I know, that my doctors suggested that I gave up work 5 years before I did. I believe if I had, my health now would be worse, but not everyone is like me. Whichever way you look at it. these assessments are wrong.



Please read my blog from 2 years ago today – 26/11/2013 – 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 to the hospital went incredibly well, the ambulance arrived just when…..




What is going on?

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..

Please stop

I had my shower yesterday, after Adam reminding me in the morning, I don’t think I had had one for a week, but I can’t be sure. It was one of those odd showers, where the water was just the right temperature and I had managed to set the shower head to the exact point where water falls on me without it triggering painful electric shocks firing all over me. I was actually enjoying the whole thing for a change and really didn’t want to get out of it, but I had to, I couldn’t just sit there all day, but it made me wish that I could get out of here and go swimming. I haven been for a swim since I moved to Glasgow, it isn’t so easy to find a pool that you can get to without spending a fortune on taxis. That shower though, it made me start dreaming of lying in warm water, letting it take all of my weight, with my ears below the water and my eyes shut, there is nothing like floating there motionless with the world totally blocked out life. Right now, just as it has been for a few days, there isn’t a bit of me that doesn’t have either pain or isn’t aching, every muscle and sinew telling me that they exist and I can’t shut them up or even turn the volume down. As the warm water flowed over me yesterday, it soothed them, but only when the water was there, it was a bit by bit therapy that I wanted it all over. I have often thought that PRMS is a bit like having a faulty volume dial, as it is as though your body has to tell you constantly about every single bit of you all the time. Sometimes it is just a background chatter, about this bit or that, on others it is a full blown orchestra and choir producing a wall of sound that knocks you over and leaves you lying there begging for them all to shut up. Right now I am not quite at that point but I am not that far off.

I woke this morning when the alarm sounded and for once felt not too bad, the joy of a complete nights sleep proved yet again, but that wasn’t what happened at all. As always I sat on the side of the bed to get dressed and as I pushed myself onto my feet, I could feel liquid dripping from my bowel, I instantly tightened my buttocks and picked up the rest of my clothes and headed to the bathroom. I have had spells of incontinence for several years, it is all part of my personal monster club, but usually there is a precursor, a small warning that things are going wrong, but I could think of nothing, until I reached the toilet, when I discovered that I had been up during the night and a sudden feeling of relief filled me, as clearly Adam hadn’t been to the loo over night. Suddenly I had this memory of my insides falling out in one swift action, I also remembered flushing the toilet and leaving the bathroom not feeling my best, but still no memory of getting up, or going back to sleep, I had had a warning just one that for some reason I had forgotten. Incontinence regardless if it is bladder or bowels, is something that fills most people with horror, no one wants to be suddenly in an embarrassing situation, regardless of how understanding your partner is, this is one thing I think we all want to deal with ourselves. As soon as I was sure that I had everything sorted and that there would be no embarrassing signs or even smells, I rushed back to the bedroom to check that there was nothing that I needed to deal with in there, before I started my day, luckily there was nothing.

There are so many things that MS does to all sufferers regardless of form, that seem to be designed to embarrass us, even spasms if they are bad, can leave you feeling really exposed as if there is someone who is there that don’t know you, some can look really odd. When you are still working full time, it goes without saying that your body is going to let you down occasionally and as things get worse, well the range it has to choose from just keeps growing. I did back then have problems with my bladder, which was bad enough, but I honestly don’t think that I would have coped if my bowels had joined in at that time. For women, issues with our bladders are easy enough to cover up, yes you need a bag full of items for cleaning up, changing into and so on, but there are a good range of discreet towels available, how men deal with there difference in anatomy clearly making accidents more visible, I really don’t know. For me it was manageable, especially after I was in my wheelchair, as nearly always my bladder let me down on standing up, not something I really did much off. PRMS has the joys of not only making you incontinent, but just as so many other symptoms, it is never happy just at one end of the scale. I also have catheters for the days it just won’t empty properly, a pattern that has clearly moved onto my bowels.

I spent nearly all of yesterday half asleep or totally asleep, I don’t know what the trigger was but I have been exhausted for a few days now. It might be as simple as the fact that I have had a couple of nights where I had to get up to go to the loo, but I quite honestly felt really screwed up, not just tired, but as though the plug had been removed from all my energy cells. The whole day I felt as though I was moving through mud that was right up above my head, I haven’t felt right since I had those spasms in my intestine, they were total killers, pain like that always drains me, but this time it was worse than it had ever been before. I was sat on the settee, with spasms switching between my arms and legs, but worst in my arms, all I wanted was to crawl away and hide under a rock and die, I had quite simply had enough of all the pain and energy levels in the pits. Somehow I stayed up to my normal bedtime, but I was so grateful to get there, to just lie down again and let my body do what it wanted while I slept and wasn’t aware of it. Yes, I am back at that point of just wanting to go into hibernation, yet all I kept hearing running round and round in my head is “this isn’t me”, of course that opens the question of who or what is it then. I know that I can’t control my emotions when it comes to tears just flooding, but there normally is something tiny behind them starting, just not an appropriate moment, but I feel tearful and raw, yes possibly down to being so tired, but it just doesn’t feel that way.

There is nothing I would like right now other than to locate that volume control and put it back down to zero, even if it is just for a few minutes, silence sounds wonderful. I know it will end when it is ready to, but I am getting impatient. I have even reached out to my booster pills, in the hope that they can make life just that bit better and it worked to a point, just not the point I was looking for, it isn’t getting rid to that voice shouting “this isn’t me”.


Please read my blog from 2 years ago today – 22/11/12 – A Muddle of Syllables

Last night I asked Adam a question, one that I got a one word answer to but I was a little surprised when he didn’t ask why I was asking. I simply asked if he had noticed that I …..