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…..

 

 

 

Arrangments

I am a lot brighter today, as I thought it was just one of those days and there was no escaping it, I just had to get through it. Days like that happen to all of us, and I am lucky that they really don’t happen that often. I am not sure how or why but I really do get less of them now than I used to, some might want to put that down to the constant flow of antidepressants but I am not so sure. I think yesterday was really about trying to get my head round the new addition, especially as until I talk to the specialist I won’t have a clear explanation of what is really happening. It is always easy to say don’t think about it, but as we all know the more you try not to think about something the more you actually do think about it.

I have a therapist coming tomorrow, Adams mother goes to yoga and through talking to the class teacher they arranged for me to see a woman who works with other people with multiple chronic conditions. Although she will be here in the morning I still can’t make up my mind as to what help she will be, it is hard for me to see how she will help me as massage is her specialist area and I already know without trying that pressing areas that hurt makes them hurt more, I can’t find anything in me that sees how that will improve anything. I went to some alternative therapies before I know it was MS in a hope to find relief from all the different symptoms I had and all they ever managed to do was make things worse. I am trying to keep an open mind but it isn’t that easy. She is due here at 10 am tomorrow so I will be a little behind with everything I normally do each day as I expect she will be here for at least an hour.

I am hoping that she will be able to help with my legs they are still the worst part of everything. Adam did some housework in the living room yesterday with the results that I had to walk round the room today repositioning all the ornaments. Just the act of doing this with the small amount of bending and remaining bent for a few seconds, has left them aching and fatigued muscles. Activity levels is now zero for awhile while they are recovering, in other words once again having to put sitting pressure on my pelvis so my legs can rest. Oh the fun of doing nothing. lol.

Once again I have spent all morning stopping to dial the number for the OT service but at always all I ever get is the engaged tone. I really don’t know how you are meant to get hold of these people as not once have I heard anything else but engaged. The letter I have doesn’t even have an email address so that you can contact them that way and writing a letter seems ridicules these days, you know I can’t actually remember the last time I wrote to anyone, yes sign things and post it back but actually sit and write something then put it in an envelope with a stamp on it, I have no idea at all. Strange but I use to write letters all the time and it is now something that nearly no one even thinks of doing, I suppose that it is yet another of one of those thing that has disappeared into the past to be lost for ever.