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…..

6 thoughts on “Who knows

  1. WE KNOW SYMPTOMS OF ILLNESSES OVERLAP; THE SAME/YET COMPLETELY DIFFERENT. I HAVE QUESTIONS.DON’T GET ANGRY HAS YOUR BLOOD FELT LIKE IT WAS BOILING IN YOUR VEINS, YET YOU WERE COLD?>DO YOU FEEL LIKE BUGS ARE BITING YOU, YET NOTHING IS THERE? DO YOU PICK AT SCABS, PREVENTING CUTS TO HEAL, ONLY TO MAKE IT A MUCH BIGGER PROBLEM, THAT NEVER HEALS? ARE YOU PRE? – MENOPAUSAL – POST? MENOPAUSE, CAN INTENSIFY SYMPTOMS OF ANY ILLNESS, TO THE POINT OF HOSPITALIZATION.((I WASTED 24 HOURS AT EMERGENCY; SO THEY COULD LAUGH AT ME))). ARE YOU ON HRT’S? I WAS JUST PUT ON THEM BY A BIT$H HALF MY AGE. I DIDN’T KNOW THAT MENOPAUSE CAN LAST FOR 2 YEARS.I DIDN’T THINK THAT THE EXPERIENCE AT EMERGENCY WAS FUNNY.I WAS HUMILIATED. PEOPLE ARE FU$KEN MEAN.

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    • No boiling veins, nothing biting other than at flee level as in itchy. I have no broken skin, but I am on HRT have been for a couple of years now without any problem. It was me who asked for it as I was getting bad flushes. It kicked in quickly and I am honestly delighted that I asked as it was like night and day. I hope it works as well for you 🙂

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  2. To answer your questions about energy, shortly, yes. Almost 100% positive that the answer to those questions is yes. I’m pretty sure that’s why fatigue is a major symptom of fibro, because our nerves are on 100% of the time.

    I’m also wondering, however, if you have depression? I have chronic depression, and it rarely presents as a loss of wanting to live. Usually, it just completely and totally exhausts me. I don’t want to sleep, I don’t want to eat, I don’t want to get up to use the restroom, I don’t want to get a drink, I don’t want to roll over, I don’t want to sit up… The only thing I end up wanting to do is curling up under the covers and sleep for a week (or more). For me, my depression sounds almost exactly like what you are describing, just a 100% lack of any sort of energy.

    I do know that psychological and physical symptoms can go hand in hand. I’ve found all too often that my mental symptoms bleed into my body, and vice versa. Especially nervous system.

    Recently, I was dealing with a similar emotional/physical dead weight type of feeling. I wrote about it: https://findinglifessilversun.wordpress.com/2015/09/29/the-funk-slump/ I didn’t address as much of the funk itself, but I mentions tons of reasons why I think it was happening. Feel free to read it in case it’ll help in any way (sometimes it helps me to realize I’m simply not alone in feeling a certain way). I did find writing the post helped me start to find my way out, so maybe you’ll find the same effect after writing this one. Best of luck!

    Hang in there! You’re surprisingly strong with all that life has thrown at you, and I’m rooting for you!

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    • I’m miles away from depression, this is totally a physical struggle. My energy levels are something I have been fighting with for years and what is making me want to go to bed, is totally down to that.

      PRMS is renowned for it’s fatigue levels, generally higher than the other forms, add in the Fibro and I should be flat out I guess. Being pigheaded has pulled me through this far. 🙂

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  3. I will keep you wrapped in my prayers embrace! I do understand, i am having new issues for the last ten days, but i will hold on to my faith and hope that it too will pass. And I will smile because I know that as I write this God is still blessing me and you! Hugs and blessings!

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