Tag Archives: sensations

Which, what or way next

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The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

 

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

 

I hate me

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I thought I had seen everything that my body could do, that was until the other morning. I had woken with the alarm clock and just as normal, I swung my legs over the edge of the mattress, and I placed my feet not quite on the floor, but a fraction of an inch above it. I always sit there for a few seconds, just long enough to be sure I am safe to start getting dressed, it was then that it started. My feet were dancing. Well, they weren’t sitting still, that was for sure. They were flicking up and down, bobbing and twitching from side to side, and I couldn’t stop them. Well, I could, when I pushed them into the floor, but if I just let them be, they danced. I have seen tremor, spasm and so on, but what I was seeing, wasn’t like any of them. It was as thought they had totally independent lives from the rest of me. From my hips down, each leg was bobbing about as thought they were insane. I sat there just watching them, for about a minute or so, it was quite honestly fascinating. I know many wouldn’t have seen it that way, but when you have lived inside a body that does so many odd things, to find a new one and one so detailed, I was fascinated. Eventually, I took control and dressed, somewhat awkwardly, as getting my legs into my trousers was a more than interesting experience, just as putting my socks on was, but I got there.

To be fair, most of my body was a little on the jiggy side, which meant the start of my day was more than just interesting, it was frustrating. Even using my computer mouse wasn’t like most mornings, it appeared that my body had lost all memory of fine motor skills. The cursor frequently flew across the screen in front of my eyes, in response to my involuntary jerks. It didn’t matter if it were my feet, my hands or even my head, nothing wanted to sit still and nothing happened with ease. Clearly it was going to be an entertaining and frustrating day, all rolled into one. I have lived for years with the twitch in my spine that means I jig around when sitting, but usually the rest of me is controllable. Yes, it does get annoying at times and I do get incredibly fed up with my upper body bouncing around, but I can control it. My favourite trick is to push my spine onto a solid surface or to squash myself into the corner of the settee. That way I am trapped and the unwanted movements are restricted. To apply that trick to every twitching part of me, I would have to return to bed, something I had no intention of doing. Sitting at my desk, helped a bit, but I couldn’t just sit here, feet flat on the floor, back shoved into the backrest and my hands flat on the desk, any more than I could go back to bed, there had to be another answer.

Relaxation is another thing that works, but it’s not practical if you want to get on with life. Which was exactly what I wanted to do and did. To my surprise, other than typing, I managed reasonably well. I honestly thought that there was no way of living normally with your body doing so many crazy things, but you can. OK, if someone had been watching me, it would have looked wild, but even though everything took a bit longer, it is still possible to keep going. I have seen people on TV with server twitches and wondered how they kept going, now I know. All you do is ignore the madness and do what you always do. Visually, the maddest thing had to be when I was in my wheelchair. My feet don’t actually touch the floor, they sort of dangle below the cushion. I took the foot rests of months ago, as it reduces the turning circle, something which was much needed in the house. Giving my legs freedom in that way was bizarre, they were flying all over the place, bashing off each other, the wheels and anything they could reach. I didn’t need a mirror to know how stupid it must have looked.

This first attack was three days ago. I have no idea what started it, but I can only guess that it is the next phase of the flare that started a couple of weeks ago, and possibly a new lesion on my spine. From its start to now, I would say that I have had maybe five or six attacks of full jigging. They seem to last about an hour or so, then slowly quieten down until they stop. All apart from the one I normally live with. I have had a couple of occasions where it all got too much, yesterday, I became so frustrated trying to type, that I actually did scream out loud and smack my hands off the keyboard. No it didn’t achieve anything, the twitching was still there and my fingers were still refusing to do as they were told, but I have to admit, I did feel better for it. The second one was even worse, and it saw me scurrying off into the bedroom. I had to lie down, to pin all of me to the mattress and take control of every annoying muscle. Lying there, I was free to use not just the pin-down method, but to also apply relaxation. I lay there for about half an hour, calming myself down, and slowly finding peace in my own body.

I have no way of knowing if this is another new normal, or if it is going to be one of those short-lived annoying spells that will fade and vanish as quickly as it started. It doesn’t need a genius to guess which I would prefer. It is as exhausting as it is annoying, but there is nothing else I can do about it, other than going with the flow. There are days when I really hate my body, and this is one of them.

 

Please read my blog from 2 years ago today – Lobe loss

I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly…..

Sensations go deep

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Would someone please cut off my hands and give me some peace! Please!! Sorry, I’m whining. It’s not like they are the most painful things I have ever had attached to my body, it’s just they won’t shut up and won’t give me even a seconds peace. I thought that the steroids would have done the trick, that today, they would have been as close to normal as they ever are, but their not and it’s not just them. You know that feeling, when you have just come inside, on a bitterly cold day and your skin is so cold, that it feels like it is on fire. Well, I have that from my elbows down to my fingertips, (worse on the back of my hands), my cheeks, lips and nose and oddly, at the top of my spine and on my front, are disks about the size of a side plate. Not so intensely, it is also inside my mouth and down into my stomach. Add into this, the fact that my eyesight is also totally screwed and I can’t see anything clearly. When I woke this morning I was so tired that all I wanted was to go back to sleep, but I had twitches so bad, that staying still was impossible, usually, lying down clamps my body still, but not even that was working. I gave up trying at 7:30 am. My body is still screaming out for sleep, I’m dizzy and I would just love to throw up. PRMS really sucks at times!

This flare isn’t showing the slightest sign of going anywhere. My doctor said if they didn’t work, that I should call the MS Nurses and see if there is anything more modern to try. I haven’t called them, but I have looked online and there is nothing. I have searched and searched, but not even the research papers showed a glimmer of hope.

Feelings and sensations don’t really sound like much, but they can be both distressing and overwhelming, especially as I haven’t had total peace from them for over a week. Everyone alive has had things like pins and needles, but in most people, they last maybe ten minutes, they’re annoying for the time they are there, then they are gone. This is far more intense than pins and needles, but try just for a second, imagining your living with them right now and they aren’t going anywhere. They have plagued you for a week and all that seems to be happening, is they are getting worse. There is no escape, nothing that will break them, even for a few seconds and you’re isolated inside this mess of constant sensation. Skin isn’t supposed to crawl, it’s not meant to be beyond alive, it’s just supposed to be there, doing nothing. When nerves are going mad like this, I have to admit, that I get scared by it. The past has shown me, that it can all too often, be a prelude to them stopping doing anything at all. This is a mirror of when I lost my hand, it too started with sensation, built to weakness and then died. For that to happen to two hands and my face, well I’m sure you can understand my fear.

Jane, my carer is due here again today, although I wasn’t even slightly aware of thinking about her coming, I suppose that there is a chance that her visit, is also playing a role in my not being able to go back to sleep. Everyone has been so supportive, so many great messages and people telling me that I am in their thoughts. I know that it’s not, but it still feels so stupid that something as simple as someone helping you shower and dress, feels so huge an event in life. I am beginning to get myself past the point of “I just can’t do this”, after all, we are three days past her first call, and I haven’t died.

In an odd way, Adam has helped me a lot with the whole process and he has done it without even knowing. Because I am struggling so much with life just now, he has been stepping in to assist me. I know that this might not make sense to some, but because my tremors are so bad, he decided on Thursday that he was going to try and stop them. I have written before about how physical contact between us is difficult, due to the pain I am in, the pain he thinks he will cause, and simpler things like the positions that I sit in and because I rarely sit still. I was in full flow of tremor that just wouldn’t give in, he suddenly slid across the settee, pushing himself as close to me as he could, then clamping his arm around me. He hasn’t held onto me like that, on the settee, for what feels like a really long time. I have to admit that at first, I was really uncomfortable with it. Not because of how he was holding me, but emotionally. It has been a long time since he has done such a thing, that anyone has really touched me, outside of goodbyes and goodnights. Physical contact in that way felt alien to me and I realised that that was part of the problem, no one has really touched me, in any way at all, for years. Outside of Adam, I haven’t even been touched by another human being for years, not even a handshake.

While we were sat there, things started to click together in my head. Without a doubt, I know the biggest thing with Jane coming here, is my loss of independence, but it was also followed abruptly, with the fact that no one has seen me naked, or even semi-naked, touched me or been involved in my life, outside of Adam, for as long as I have been housebound. Just having Adam holding me, opened up things I didn’t expect, and showed me, just how much I have really been isolated. As we sat there, I felt myself putting all of this together and I understood, even more, why I have been beating myself up, stressed to the max and so uncomfortable with this new phase of my life. Being showered by someone, brings together all those things I haven’t been involved in, or felt for years. Understanding is always the first step in living with anything. We have to understand before we can accept anything.

I’m not at ease about today, but I am far more at ease than I was on Wednesday. If I felt well, then I don’t think that today would be half as bad as the last visit, I just feel so bad and that is something I can’t change at all.

 

Please read my blog from 2 years ago today – 12/06/2014 – Somethings don’t change

It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be……

Body science

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I seem to have the twitches today. Not the normal ones that I live with, this is more like a shudder that is traveling through my entire body, but only, in the parts of me that are actually moving. If any part of me is motionless, then I don’t feel a thing. Should I move my hand and say my foot at the same time, the shudder is there identically in both. It’s not only bizarre but it is also mildly upsetting. I know that I have felt it before, exactly when or what caused it then or now, I don’t have the slightest idea. It’s one of those things like so many others, appears, disturbers me for a while and vanishes. Admittedly, it doesn’t cause me any pain, it doesn’t do me any harm, but the same can be said for much of what happens in my body and possibly yours. Yet all of us go on daily, living with these things that no one really cares about because they aren’t going to kill us. Tell your doctor, and they might give you some kind of medicine that might possibly help, but they probably aren’t any more sure about it than we are, plus, they don’t have to live with their side effects.

I learned a long time ago that I had to gauge for myself, just how important it is for me to be rid of this or that symptom. To begin with, I was more than happy to take whatever drug they threw at me. I have and still do have amazing trust in my doctors, but I learned not to have the same trust in their medications. The problem I now know has a huge amount to do with my condition. I didn’t know it then, but I do now, that PRMS is notorious for not responding to any of the range of MS medications. When I was first diagnosed, according to the internet, PRMS didn’t exist. I even questioned my consultant as to why no one had heard of it. Apparently, it was rare, that rare, that the world wasn’t interested and that included the pharmaceutical industry. There are no drugs that are out there, not even the ones designed for MS patients that will ever help me with any of it other than the pain. Both of us, were in a world of discovery as my body was only going to respond if it suited it, not because it worked for others. In the first five years, I was changing drug after drug searching for the ones that would work the best. Then I called a halt to it. I worked out a hit and miss list, I ditched all the meds that didn’t work for me, regardless what my doctors said, and I kept the ones that I could live with. That was my first rule, “It had to work for me”.

That decision was closely followed by the one that said, “Can I live with this symptom, or do I need help”. It is so easy to run to our doctors every time that something happens that is different. Just because it is something that the average person would find terrifying, doesn’t mean it is something to be terrified by. My test mark is to say, “Is this symptom impairing my life”. This tremor or probably more accurately, this quiver, doesn’t stop me doing anything. It slows me down, but it doesn’t actually stop me doing things, therefore, I don’t need a doctor, and I don’t need medication for it. In fact, the only time I really turn to my doctor is when I am in pain. If it hadn’t been for the pain my intercostal muscles and diaphragm were causing me, I wouldn’t have been diagnosed with COPD when I was. Not being able to breathe was something I had grown used to, not being able to breathe and being in pain, was something I didn’t like at all.

The medications that I do take, I don’t know if they work for anyone else, or have even been tested on animals, but they have been tested on me. My small selection that I am on now, may not be the standard for MS, but they work for me and that is what matters. People ask me all the time if I have been on this drug or that one. Partly, because of my bad memory, I’m not always able to say, but I always question, why they are asking me, and are not testing them on themselves. Yes, I have a rare condition that is known not to respond as others do, but I honestly believe whatever our condition, the only way to find out if it’s going to help us, isn’t to read about it, or talk to others about it, it is quite simply to try it, and to remember, you can come off it again as easily as you started it. Our doctors can only advise us and suggest what they think will help. Unless they happen to share your condition, they won’t have tried it personally, and don’t even assume they have prescribed it to anyone else either, remember, all forms of MS are reasonable rare. After many years of practice, when my GP read my diagnosis, he told me I was the first person ever on his books to have the condition. Most of the time, our doctors are offering us a drug they know nothing about, other than what they have read. If it doesn’t work for you, well they always seem to have another one to offer, if you truly believe you really need it.

All of us have different body chemistries and every drug will work slightly differently for almost all of us. Hence those stupid lists of “possible side effects”, so many people miss that word “possible” and assume they will get them all. To date, I have only been aware of a handful of drugs that have ever caused me any issues, and they were really not worth mentioning.

 

Please read my blog from 2 years ago today – 15/05/2014 – Look to the future

On Saturday I watched a program about the relief of Bergen-Belsen, world war 2 has been a subject that since I became housebound I have found out so much about that at school for some reason they hid from us. It started simply because I can’t stand the drivel that streams out of the both the BBC and ITV every morning, I have to say I was really disappointed to find that in all the years I hadn’t been able to see the morning offering, that nothing had changed. I honestly don’t know who they aim the programming at at that time of day, but it isn’t for me that is for sure. So I started channel surfing, I was searching for documentaries about almost anything that might have just a little more body about it, it was the history channels that I found myself……

One last time

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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……