One last time

At the minute, I feel as though all I am doing is complaining about one thing or another. Which honestly isn’t the normal me. It’s just at the minute my body has switched into hyper drive and takes great pleasure in confronting me daily with some issue or another. I honestly don’t know when I last had a day, where I can say my life has been normal. It has been a slow ratcheting up process and I know where it all started, as the base problem is with me every single day. The pain and discomfort in my abdomen was and still is the start point of every day. I haven’t been free of it now for over three years, but it was livable before, now it consumes my whole day. I am constantly shifting trying to find a way of shifting the pain areas or relieving the discomfort. The third batch of tablets that my GP prescribed have reduced the spasms dramatically, but the spasms are only part of the problem. It is the constant pressure and feeling as though one area or another is about to burst, that really gets to me. Once again last night, just before midnight I woke ready to throw up, but through a process of relaxation and breathing, I managed not to. I don’t know what it is about that point of the night, but every time I have thrown up, or been close to it, has always been just before midnight, eight hours after I last ate. Luckily this morning, I went to the loo, so it has reduced the pressure slightly, as always, what I passed was normal and it’s transit painless.

It goes without saying, that when you have problems like that with your intestine, you are going to have issues with your bladder. It’s either pressure that keeps you running, or blocks all real flow. The antispasmodic drugs mean I am having, even more, problems emptying it. I know I should just give in and use a catheter but as long as I can manage I will. I’m not getting any messages that it needs emptying and when I do, well it dribbles, flow, stop, dribble a bit more, stop then gush and so on. I am wasting more time in the bathroom these days than I care to think about, even more, in the energy draining trips required to get me there and back.

It would be bad enough if it were just my lower abdomen, but as always when one thing is upset, it upsets others. From my written history, it’s easy to know that it always upsets my breathing as well. The constant pressure from my stomach causes both diaphragm and intercostal spasms. My PRMS already causes me enough daily issues with the entire mechanism of breathing, without added extras. I had until a couple of weeks ago been really quite happy with my lungs. They weren’t perfect and I know they never will be, but I was content. Now I have sporadic pains appearing throughout my lung cavities, as muscles within them respond to the constant compression, all of which means that my oxygen levels are all over the place. At times, there is no doubt, that that is what is behind the lightheaded almost drunk sensation, but not at others. It is a feeling beyond a need to sleep, it is almost a desperation that is too hard to fight, but I do, especially in the evenings, as those hours are my highlight, the time I won’t let my health get in the way of.

As all of us know who have MS, if there is something going on in our bodies, whatever the source, it triggers our screwed up nerves. Thanks to the pain, the pressure, the difficulty breathing and anything else you can think of, my entire body is permanently alive with warped sensations. Every nerve seems to be alive and transmitting back whatever it chooses to at that second. Most of the time, it is nothing more than a gentle buzzing sensation, which shifts around my body, area to area. Frequently, it will simply consume me, holding me in a bubble of frenzied activity, then die away again, returning to simply passing the message to its neighbour, before resting a while and waiting to once more join in. That doesn’t sound like much, but when it’s constant, when the only peace that you can find from it, is when it is replaced by another bizarre sensation, or you attention is grabbed by something happening somewhere else in your body, it drains you. It also appears to me, to be behind another annoying symptom, the tremors. Frequently I have found that when the buzzing sensation becomes intense the muscle responds by twitching and jumping. They become hesitant in their actions and miss fire extravagantly, possibly amusing to others, but annoying to anyone who has to live with it.

I’ve been through all of this time after time, after time. All of these symptoms I know well individually, but when it turns into this clamour of activities, well it always comes down to my intestine. I know that if I could just get it to settle down, to return to its norm of odd spells of pains and discomfort, then that the rest will settle down too, but nothing is working. I quite simply don’t know what to do. How can an intestine that isn’t constipated, or actually even if it was, cause so much trouble? I’m waiting for what will be my third round of seeing a consultant. So far, not one has fixed it, one helped a lot by removing my constipation, but this pain has gone on for far too long. I don’t know what the answer is, but there has to be one, but until I see the consultant again, I promise not to complain and moan about what my stomach is doing to me. Well, not unless that damed pressure actually explodes.


Please read my blog from 2 years ago today – 29/03/2014 – Time together

For the second night in a row, I went to bed early and I slept like a log, normality for me as It only takes my head to touch the pillow and I know nothing until the alarm sounds. I count myself as so lucky that sleep is my peaceful escape from everything, yet I can’t help equally to curse it for taking so much of my life from me, so many hours wasted and gone, without the slightest memory of even one. I know I must dream, but for me it has always been the case that I just don’t remember them unless something really odd happens. My hours of sleep are like someone just switching me off, then eventually on again many hours later. It doesn’t matter how many times I tell myself that my body needs that sleep, going from a person who used to sleep……



Body Check

Good morning brain, I hear the alarm clock telling us it’s time to start another day. Before we move best make sure everything is there and ok.

Feet first, I apologise for walking around so much yesterday and I really did get the message form your soles. I understood quite clearly from the sharp fiery needles you communicated with, that I need to use you less. I also promise I will remember today to take my fluid meds and save you from over stretched skin. Not wearing shoes I know is a mixed blessing for you but we have agreed before it is better to risk the odd cut rather than the pressure corns caused on our deformed toes by them. It’s OK toes I hadn’t forgotten your location, I know you think you are frequently forgotten but making the nails catch on my skin won’t help me bend to cut them I promise this weekend I’ll get you some help. I understand feet that you are now in more pressure every time I stand, the extra weight effects far more than just you, but yes you do have to carry it, let me know how we can exercise and I will consider it. A quick question at this point. How do you do that totally numb to everything around you but maintain the pain within? It is really a clever trick but could we stop practicing it for a while, you’ve once again been passing the idea on to the rest of the leg and it really isn’t funny when from toe to hip you die for a while. Thank you. I know ankle you still haven’t forgiven me for braking you 20 years ago but your bad repair wasn’t my fault. I told them the messages you were sending but they said you were fine, just ligament damage, the bonnie overgrowth shows they were wrong but it wasn’t my fault the doctors made a mistake, send the pain to them please. Before I move on heels why do you keep feeling as though your bone is trying to push out through the skin? I don’t get this pain or what it is, so either let me know or stop it please.

Lower legs I know you take a real battering from this MS thing but I’m sorry I still don’t know how to stop the spasms, the pain they cause I know is unfair on you but what can I do? Your muscles tense to a mega cramp and hold, it hurts like hell and no matter how much I rub the muscles for you, they hold until ready to give up, then a strength goes with it. If I had the answer, I promise I would use it. I know you are exhausted all the time and sharp razer pains dig into your shins, I give you all the help I can but there is little left to do but push my fingers deeply into the source point. I sympathise but making it worse for a minute dulls it for several, not much of a choice I know but the only one we have. I try to sit as much as I can but that doesn’t really help that much, the constant ache tells me your under attack and defending the best you can. Your part in the battle is noted. At least knees you are and remain rather normal which believe me is nice, I thank you for that, is there any chance that you could start working as a mediator between thigh muscle and calf muscle there constant competitions to see who can create the most pain is rather childish and really needs to stop.

Now thighs what can I say to sooth you, what words would make you relax and be pain free? None I guess as over the years I have sworn at you, soothed you and cried for you, still you have found no peace. Like your sisters below the calf muscles you too spasm not so often which is good but it happens. It is your roll I know to give me the strength required to stand and walk but you fail me so often. You drain of energy before the day is even hours old and leave me stranded, are you anymore prepared for today than yesterday? I would appreciate an answer as I have an idea that it might be nice to cook a meal today, but I need your co-operation. Have a think and let me know. Nearly forgot while you are thinking about that, am I going today have that searing pain in the left buttock? Between that and the pressure on the right one, sitting was a little difficult yesterday, one side or the other would be manageable, please.

Bladder and bowel I know you refuse to speak to me but that doesn’t stop me trying to communicate with you. Hello, hello, oh come on guys stop sulking, please?

This brings us to you upper body. Well diaphragm, I can already feel the MS hugs have started for the day, so I guess I know your opinion on co-operations without asking for it. Hug away, I can’t fight it so I guess I live with it. Lungs, well you are breathing which is good to know and I don’t feel any thickness requiring an inhaler so, so far so good on that point. As points go, the sharp ones up by me right shoulder, what is that all about? I know you have happily absorbed loads of much needed nicotine and don’t worry I’m not going to withdraw it but I wish you would either tell me there is a problem or shut up I have enough other things shouting at me all day long. Don’t feel left out I haven’t forgotten you, I probably listen more closely to every section of me now than I ever have. Spine you never seem to stop twitching, I can’t remember when you last sat still unless you are pinned to the bed, given any freedom and you wobble, twitch, shift and jump. You strain at the muscles like you are trying to escape, not that I blame you, I’d get out of here if I could. With all this movement all the time you would think that it would burn some fat but no. Nothing is ever that simple is it. On the good side you haven’t caused any sever pain lately more aches and fatigue so things aren’t too bad with you. But the problems caused by you Vagal nerve is getting silly. You are supposed to make my gut work, tell the muscles to process food, but you’ve stopped. The meds they have supplied are there to help so please stop making violent reaction to them and try harder to keep my heart at the normal rate, passing out isn’t that much fun.

Next, yes hands and arms. You two worry me all the time, you never seem to just be there as you once were. Left arm you are terrifying I wait daily for you to die again. Every morning I expect to try and make you switch off the alarm to find you don’t move again. You never really recovered from the last time and you are fragile I know that but having got you back I would really like to keep you. I can live with the constant pain, the piercing pain in my fingers the numbness in the palm, I can put up with the tightening cuff on my upper arm, the tremors and weakness, I can take all of this and more if I have to, just stay with me please. Your friend on the right feel frequently as though it is copying you but I am glad not to the extent of your mastery. Please stop teaching it, you both are really needed in my life.

And now we get to you head,if you could just remember to remember that would be a good starting point. I am trying to work out if any part of you head works OK. Mouth you need to work on simple things like talking without a stutter and confused words, you choke on food and sometimes water and still to this day forget at times how to sort out changing from one to the other. Lets try to day just to not choke on anything shall we? Eyes, just take it easy I need what of you that works to keep working and ears you hear but the balance channels need help. Spines jerking probably makes things harder, sorry. Oh and lastly comes you brain. Well lets see, each day you are fogged, you forget, get confused and loose control of all the above. I guess we just have to agree you are there and we have to work together today, is that OK?

That’s it body the deal for today is settled time to turn the alarm off and start the day. Dam it, right arm what are you playing at this wasn’t the deal what’s with the pain in my finger?

Flare day 5

This morning I was on the phone to a friend talking about his drum kit, after a few minutes I have to say my mind started to wonder, although I was in the music business years ago I was never really into the finer details of different types of cymbal. For the first time in the past couple of days I found myself grateful for an extremely painful spasm. As he started to discuss the fact that his snare drum was made of brass, tears started to run down my face and I started doubling up. This was the third attack today on my diaphragm, not an MS hug, that is the intercostal muscles but right round me crushing the lower part of my lungs and my stomach. The pain radiated round me and up my spine taking it to my shoulders and I had to get off the phone.

I had at 7:30 this morning dared to think I was heading to the end of this flare but clearly I’m not. My left leg is still sore, which I would expect as there is always areas that take time to settle but there was nothing new and nothing that I thought had got worse. For two hours I was really feeling brighter due to my optimism but it wasn’t founded and was definitely premature.

On a scale of one to ten this hit at level ten right off, no gentle working up, no warning, just huge pain. I tried lying on the couch but it’s too short really so totally flat out is impossible, I thought about the floor but I always have problems getting back up. There is one good thing about spasms, the clue is in the name, they don’t last for long and the muscle will release. This one was turning into a serial killer, and leaving pain behind it. After the fourth episode, I retreated to bed for a couple of hours and the vertical position has actually helped. I had lain there as still as possible trying to relax my upper body as I have found before that spasms can be triggered once they have started themselves. Fingers crossed I have made it to 3 hours, there is a residue pain, just as you would have after having a bad cramp and I am moving slowly just in case.

The good news today is that my face feels normal again just small normal spells of tingling and gentle numbness. It seems to centering on my spine, the gentler one in my lower back and are still there, with now a big sister from hell centered on my upper spine. Add the fog, stutters, tremors and twitches it is fare to say this is day 5.