Causing pain to break pain

It is one of the hardest things to do, to cause yourself pain, but it is something that I have learned often has to be done, whether it is a spasm in a major muscle like my thigh muscle or something smaller and more delicate such as my intestine. I don’t know how or why I first did, I suspect it is one of those instincts that we all have, but I know that I learned many years ago. I know from reading what others write that it is an almost universal reaction to spasms that don’t respond to a gentle massage, to then start beating the hell out of them and when that fails, to apply as much pressure as you can against the spasm. It is quite often easier said than done, especially when the pain is severe and your initial pressure actually makes them hurt even more, but if you push and push until you have no strength to push anymore, amazingly, the pain stops and blissfully dissipates into nothing, over until the next time. That is all well and good as long as the pain is in a limb or even in your neck, yes you get spasms in your neck as well, but when that spasm is deep inside you, well it just isn’t as acceptable in public to deal with some of them, trust me you can receive some rather odd looks even when it is just in your leg. The downside is often that you don’t just land up with one muscle, the one that was in spasm then suffering from fatigue, but you also land up with two useless arms as well. Often it is a case of weighing up what is needed the most and if you’re out shopping with heavy bags to carry, those arm muscles will be needed, the reason I also learned quickly to have a five-pound note that was never to be spent with me all the time, just in case I had to call a taxi.

The five-pound note wasn’t the only money I used to take with me when out of the house, money that was earmarked for emergency use only, I always also carried enough to buy myself a coffee. That was a fund that I often dipped into as when your body says stop or it is a spasm somewhere inside you, sitting down having a coffee offers you more options of how to deal with it. Sitting with a bag on your lap and quietly pushing it and it’s contents into your stomach as your intestines have managed to tie themselves in knots is another relief trick I have used many times in the past. It is far harder to push your hands alone into your body, something to do with the angle I guess, but as most cafes have fixed tables, putting a bag between you and the table edge and pushing yourself forward, is a trick to remember, much easier than lying down in the street and twisting yourself into some odd position that might just find you being arrested at worst or committed until you can be alone and explain what you were really doing. At least being housebound has that one blessing, I no longer have to find a way of covering up or a way of pretending it’s not happening at all.

In the last few days, I think I have tried almost every trick that I know to break the pressure in my upper stomach. It’s not the same as a spasm I know that, but there are a few similarities and because I still believe that I have a two fold problem, worth trying until someone tells me otherwise and can prove it to me. I am still convinced that part of the issue is down to something either constricting or pushing into and narrowing my large intestine where it goes under my ribs on my left side, as that is the point where I get most of the pain. When the pain is at it’s worst, my stools become pencil thin and only return to normal with the pain settles from time to time, something that hasn’t happened for a couple of months now. I did get some relief last night, after taking my higher dose of laxatives for the third night in a row, I woke at 2 am and headed to the loo, actually not caring in the slightest that it was the middle of the night, I was just glad that something was happening. I made two trips within 15 minutes and when the second ended in diarrhea, I was both relieved and confused. Relieved because that usually means that is all there is, but confused as neither the quantities or the internal feelings were confirming that conclusion. I went into the kitchen and sat there for a while while I had a cigarette and thought about it, I was sure that I wasn’t clear and to confirm that point while I was there, the pain started. It had been missing for nearly 48hrs, but there it was once again at the exact same points as always and there was nothing that I could do about it, other than return to bed and hope it wouldn’t be too long before that shifted too.

I didn’t have to wait long to get the confirmation that it wasn’t over, as the wind began within minutes of lying down, wind never follows, it is a prelime, not a finale . When by 9am nothing else had happened, other than the pain under my ribs on my left side increasing and increasing, I decided that I was going to try once more to apply pressure and to make whatever was still their move, I tried pushing my hands in as far as I could, curling up against my crossed arms and even lying over the arm of the settee, pressing and rolling my stomach over it. As has happened many times before I actually felt it pass through the point that I have been saying for years is part of the problem and if this doesn’t prove it, I don’t know what does. When I went to the loo during the night, as has been the case for the last couple of months, everything I passed was no thicker than a pencil, well apart from the diarrhea, it’s hard to gauge, but within seconds of my feeling things move I went to the loo and once again I was back to pencil thin stools. I know they found nothing two years ago when they searched by scan on the outside and camera on the inside, but I swear that the muscles at that point go into a lockdown spasm and nothing will release them until they are ready to let go. The diminished nerve messages no longer have the strength behind them to make the muscles in the rest of me force it open by shoving through using brute force. Three years ago, the only pain was on the left side, but as the years have progressed, so have the number of points where there is pain, I now believe that I have several points where locked down spasms are happening, forming more and more pockets each their own little pressure balloon. When the pain is one sided as it was this morning, I have had great luck by applying pressure, but when it has spread across my stomach, which it is doing now, it doesn’t seem to work, I can’t explain that one other than it is just too much to handle when there are so many stagnated sections. I simply can’t manage to get enough pressure on each of the points that appear to be in spasm and the more I try, the more it all complains about it, but when there is both internal and external pressure it is going to complain when there is nowhere for the pressure to go. It doesn’t take a genius to know that I may have shifted some today, but I am a long way from clearing it all.

Causing pain to relieve pain does work, but it is only sensible when you know you aren’t causing any worse damage, which is the reason that I hesitate when it comes to putting pressure on to a stomach that is already complaining big style. I may have been ill for 30 years, diagnosed for 14 of them, but I still don’t know enough even about my own body to go poking around into area’s I can’t see or don’t know what is wrong exactly with. Sometimes I think I should be braver, more willing to just find out, but when the pain levels just keep going up, well even someone who is brave enough to try in the first place, looses the will to try further. So right now, all I can do is wait, wait and see what happens and what eventually the outcome will be.

Read my blog from 2 years ago today – 1/05/13 – Oxygen and peace please

My body has been through a lot over the years and it isn’t unusual for pain to wear me down by the end of a day, but with medication it is rare for me now to hide away because I don’t know how to deal with anymore. That is fair enough, I have MS and that happens, I wouldn’t really expect any less, but to be driven to my bed through discomfort, not pain, well I never……

One day

Over the last couple of days, my diaphragm has been driving me mad. It isn’t the fact that I have to spend my time constantly thinking about getting enough oxygen into my system without being in ridiculous amounts of pain, it is just the constant pressure and discomfort that really gets to me. Pain can be managed, I know that and yes I manage it to the best of my ability, but to date, I have found nothing that actually makes sitting with a constant pressure band around my midriff comfortable, Morphine and doing my best to keep the muscles that I can control relaxed just isn’t enough. Everyone focuses on pain when you have something like PRMS, Fibro or COPD when you have all three, well that seems to be all that they see, my pain, trust me discomfort is just as bad especially when it never seems to give in and just give you peace. In many ways, I would actually go as far as to say that it is worse than pain, as pain has an answer in the shape of a little blue booster pill, the pain leaves but that discomfort, it never leaves unless it chooses to. My entire day is spent shifting, moving and trying to relieve it, there doesn’t seem to be any pill that I have that makes a difference and to make things even worse, it just doesn’t change, it just goes on and on and on.

Last night when I went to bed I was in true pain, the usual mix of the left side being sliced through by a sword and my right being hacked at by a saw, while a piece of razor wire is wrapped around me daring me to take just one deep breath. I took a booster pill and lay down waiting for it to take over and for sleep to take me out of the whole situation. Just like so many nights in the past year, I lay there scared of not taking deep enough breaths to ensure there was enough oxygen in my system. When I was having the tests that showed up the COPD and the fact that the spasms were affecting my breathing, one of the tests they did was to just put a monitor on my finger to measure the oxygen in my blood. At that point, I was once more shallow breathing and I was shocked to see that the oxygen in my system was far too low. Ever since then I have done everything I can to not take more than four or five shallow breaths without then taking a deeper one, but the problem is always the pain and discomfort. I know also that that is another reason why I am always so desperate to go to sleep as I know my body will adjust and take care of itself without my worrying about it. I lay there awake long enough for the pain to subside and for me to be left just with that band that was grasping at me tightly, just as it is right now. The pressure over my kidneys and right across my front was the only thing left that I could feel and despite going right through my relaxation system, nothing was shifting it. Sleep, regardless of how much you are craving it is hard to find on nights like that and the result is always the same, stupid things enter your head and start chasing each other around, making things even worse. I don’t think it actually took me that long to slip off, but neither did it take long for me to wake again when the booster pill wore off, leaving me to having to go through the whole palaver over again. For some reason, the middle of the night session is always the one that take the longest to return to sleep again from. I am sure that it is because I have had some rest, but not nearly enough and I was getting less and less by the minute.

Half an hour before the alarm sounded, I woke suddenly and did what is the closest I ever get to flying out of bed, a sort of slow twist with a stiff flip would be a better description. To top off my night, I had what I have reported before as the worst spam in hell as you simply can’t break it, right between my legs but so deep inside nothing reaches it. Between that and my diaphragm, I couldn’t even get myself dressed, all I could manage was my top and to grab the rest of my clothes and leave the room without waking Adam. I knew from experience that I wasn’t going to be able to sit to put on the rest of my clothes, I went to the only place that I could think of where no pressure would be applied, the loo. It isn’t an ideal place to try and reach my feet to put on my socks or even get my legs into my trousers, but it was the only place that I had the slightest chance of achieving such a simple act. I then spent the next fifteen minutes of my day sitting on the arm of the settee, trying to find some way of applying pressure, for once I did have some success, well either that or the Morphine kicked in super fast. Right now, despite all my daytime meds, discomfort still reins, including a shadow ache where I would rather not have one as I can do little during the day but sit. This post is beginning to feel like one long moan, but it’s not, it’s more a case of saying to those who don’t live inside a chronic condition that pain isn’t the worst thing there is, there are things that can’t be changed and plague our lives in a way that is hard to get across in any other way than I have. Just like a moan, it goes on and on and nags away at you like a reminder that you really don’t need.

One day, its the dream that most of us live with, just that one day, one day they will find a cure, one day they will fix the pain, one day they will bring back the comfortable we no longer know. One day I will be able to walk without waddeling or dragging a foot, one day I won’t have even a minute of that feeling of being cut in two. One day I will be able to lie down and feel the comfort of my bed rather than the band that squeezes the air out of me, but one day just gets further and further away, rather than closer. What ever our condition is or the drugs that they give to us, the one thing that seems to be missing is the understanding that comfort is probably the most important thing that they could possibly work on for those of us who won’t be here to see the other one days.

Read my blog from 2 years ago today – 21/04/13 – Inviting in the inquisition

I was a foster child from the age of 13 to 16, it left me with a really negative impression of the social work departments, it wasn’t that they failed me, actually they didn’t. I was given exactly the care I needed at the time I needed it, including them knowing I needed to be on my own before I was even 16, I was responsible for myself living in the YWCA. So their assessment and provision of services tailored to my needs, well I have to give them 10 out of 10, but I have still this total negative feeling towards them……

It’s such a simple thing

I seem to be being hit by waves of tiredness this morning, which after another two nights of disturbed sleep, isn’t really surprising. I had been so hopeful that sleep was going to be something that I was going to get for a while, four nights ago I slept without waking at all and three nights ago well I was up only once, but the pains have all returned full force in my stomach and sleep is once again something I am not allowed to do. I know that at its worst I am awake for just 10 to 15 minutes each time but any spell of being awake, even just long enough to check the time before returning to sleep, seems to just knock me for six the next day. Last night I was up three times and awake once more after that, but when I wake in pain, regardless where it is, I find that I have to get up, just lying there means lying there in pain, getting up usually breaks it and allows me to return to peaceful sleep until the next time. We all need sleep and we all need good sleep, once ill, those needs are multiplied over and over again as your health slowly fails.

It is the side effects of lack of sleep that most people don’t seem to understand, as we have all gone through spells where we aren’t really sleeping and you get over it. Anyone who has had a baby knows exactly what it is like to not get sleep, but you still go to work and carry on as normal, maybe you feel a little down and as though your body is in need of rest, but you just get on with it. That was my opinion as well I had been there and done that, lack of sleep was difficult but not the end of the world, I believed that right up until my health had reached a point where I realised just how important sleep was going to be and has proved to be as time went on. There are so many different things that require that sleep to restore themselves and so many different factors that work along with our sleep that really can change our entire lives. Up until this year, sleep was something that I did with ridiculous ease and without the slightest chance of waking, within seconds of my head touching the pillows, I was asleep and apart from a bomb hitting the house the chance of waking me was tiny. I can map the two thing perfectly, my bowel issues and my lack of sleep go together with total ease, as they have matched each other step by step. I don’t know how I sleep through the spasms and pain the PRMS cause me, I just do, I suppose it is a case that my body has learned to not react at night over the long slow build up that had been the course of my health for the last 30 plus years. December was the last time that I had more than two night sleep in a row without being woken by anything, right to the point that I slept for 12 hours with ease, not even waking to go to the loo or even moving in my bed, waking exactly as I went to sleep. Then all the mess that is documented in the previous posts started and sleep became this monster that I longed for but wasn’t allowed to have. What the exact difference there is between pain in my stomach and pain anywhere else is I don’t know, but there clearly is one as in the last three months every single time I wake it is because of spasms in my stomach. At times, I know without a doubt that it is either just the movement of wind or solids inside of me, stretching and crashing it way around my intestine. Other times it is clearly my diaphragm that has been pushed to its limit from the pressure below, but both are pains still there when I wake and both require me to stand and move around until they release, whichever it is that wakes me, I always know it is just the start of something much bigger.

When you don’t get the sleep you need, nothing seems to go smoothly and everything that you could normally handle, seems like suddenly huge and an issue that is going to take over your life, rather than just another of those hiccups that life likes to throw our way. It rips apart that all so important routine that not only keeps me sane, but is required for every aspect of my health and something I have also written about a lot. Once that routine starts to slip, everything slips, I had my daily online work down to a tee, I could manage to complete everything by 1pm, giving me a couple of hours to myself to do the things I wanted before having to take my afternoon nap. Between my tiredness, the lack of concentration that that causes and the general stop-start effect that it has means that I am once again back to taking all of those two hours, just to complete everything. The longer I am without my full sleep, the more frustrated I am getting by not having the time to rest and just do things for myself, like dying my hair, which now has two inches of horrid grey showing where purple should be. When you are tired like this for what feels like your entire life, life feels like one long chore without the high points that should be there to make up for them. Although the normal pain from my PRMS may not be what is waking me, it is eating away at me when I am awake, every twinge now seems to be felt and no position is comfortable for any more than a few seconds, I can’t escape it any longer as sleep was my escape.

I spoke the other week of being on a spiral with all the problems that my bowels were causing, well this is the next layer of that spiral, this is the layer that pulling my general life quality down as well. Constantly feeling as though I need sleep, is something that makes me just like everyone else, that little bit more short tempered, I don’t like snapping at Adam and although he understands, it doesn’t make it any easier, but I am not just short tempered with him, I am now short-tempered and impatient with myself. So why don’t I just go to bed right now, simple, I have to at least stick as closely as I can to my routine and to get everything done, if I went to bed now, well I would just be building up the problems for tomorrow as I wouldn’t sleep well tonight. Life right now feels far too far over into the lose, lose side and I don’t like it. I am too tired to want to do anything but desperate to get it all done, not wanting to eat, but having to or I know my bowels will stop completely again, I want to sleep but I know it would just make things worse. Right now if the doctor said that he was going to give me a stoma, well I think I would take it, as long as they could reverse it in a week, during which time I would ask them to knock me out and keep the world a million miles away from me so that I can just sleep.

When I was a Mum with tiny children, I could weeks on just a couple of hours sleep a night. When I was a DJ, well I did just the same for the time I was on the Radio and gigging live, the radio station being a two-hour journey from home and my evening venus. Even when I was in my last job, there were many months when I got no more than 4-5 hours sleep, due to the levels of work I was having to do at home, just to keep up. Now I can’t manage with a disturbed 13 hours per day, even when I do get a couple of good nights every few days. Sleep is one of those things that people just don’t realise how important it actually can be, it’s such a simple thing but it is also such an important thing as well.

Read my blog from 2 years ago today – 25/03/13 – The visit > http://bit.ly/WQm3bE

Everything is in shortened versions today as Teressa and her fiance will be here today so that Adam and I can meet John before the wedding. Adam miss read her Facebook on Saturday and gained the impression that they wouldn’t be driving up until Sunday rather than on the planned Saturday, so after I went to bed he thought he would take all the covers off the settees and wash them. The phone range at around 10:30 yesterday………

Piecing things together

Thanks to all of you who have left messages and suggestions both here and on Twitter, I have to admit that one made me laugh, although probably valid. The suggestion was that I bought a large quantity of really cheap glasses so that when I got angry, well I could smash them. I have to admit that anger seems to be one of those emotions that feels as though it is missing or at least not fully formed in me. Don’t get me wrong, I do get angry, but it never lasts more than a very short time, after that it either turns into guilt or a list of questions about what just happened and how to avoid it in the future. I suppose that is one of my personality quirks that allows me to cope with my illness so well, if I had built up anger towards the people who have failed me over the years by failing to make a diagnosis or the idiots who reacted to some of the things I just have to live with badly, well I would be gibbering in a corner somewhere as the amount of anger would have driven me mad.

As I expected yesterday when I wrote my post, I didn’t go to the loo again yesterday as the effect of the laxatives had worn off, unfortunately I know without a doubt that I am still carrying around a huge amount of food. I had noticed that one of the things I was passing looked like sweetcorn, but I just dismissed it, as I honestly couldn’t remember eating any sweetcorn for ages. It wasn’t until I went to bed for my afternoon nap that I suddenly remembered when I actually had last eaten it, Christmas lunch, as yesterday is only the third time since then that I have actually gone to the loo at all, the two previous visits being just as useless in quantity as yesterday’s, well it is actually highly possible that what I saw was in fact sweetcorn. The last time that I actually managed to clear myself through, it took four days in a row of taking the same laxatives as the other day, passing small quantities each time, then a fifth dose which was a double one, before I felt as though my body was free of everything. The downside of that was the pain it put me through and I really don’t want to go through that again. Ever since then I have been taking 4 Dalcoease every day to try and keep things just that bit softer, I really thought they were helping until yesterday and now I am not so sure, but I am going to keep taking them for now. There isn’t a single day that I am now not in pain at some point due to my stomach and the feeling of pressure is often so intense that I have this growing fear that my intestine might just rupture, especially when one of the large lumps suddenly moves, that is unbelievably painful. As yet I haven’t spoken to my doctor, I felt yesterday was the wrong time to do it as I needed to get everything straight in my head before I even made that phone call. As I said yesterday, this time I am going to keep at them until something more constructive than just being prescribed things that simply don’t work for me.

I know I have said a hundred times that there are so many hidden other aspects to any given chronic illness, but they are now starting to become as major an issue in my life, as my list of conditions. It seems as though they, like my PRMS are progressive, I never thought that the problems I was having going to the loo 3 or 4 years ago, would ever land up like this. Looking back, well I was deluded when I thought that was as bad as it could possibly get and if there was a way to go into rewind, I would happily go back to those days. When you are diagnosed with a chronic illness we all rush online and read about the symptoms and if we can find it, pieces written or even filmed about life with those symptoms, what has been totally missing is all the other things that are rarer, but caused by our illness. Go now and read what every you can find about any form of MS and it will briefly mention constipation, not once have I found anything that even gave me the slightest clue that it could ever be like this. If I were to say what the most frustrating thing about living with PRMS is, it’s the lack of honesty from every place that even mentions the subject. Personally, I would have preferred to be scared out of my wits, rather than to be lied to over and over until they have to admit what I worked out long before they eventually even bother to tell me, read through my blog and you will find over and over occurrences of the same thing with other symptoms.

No matter what the doctors say or don’t say, the outcome of what is happening just now isn’t pretty. I knew from the beginning that my PRMS would be the source of my demise, but I never thought that it was going to either stop me from breathing or from disposing what I have eaten, two things that life is reliant on. Yesterday and today, I have done a lot of reading, I had to take the PRMS out of the equation, as that was getting me nowhere, but everything I have found kind of says that the medical profession don’t have any real answers, all they can do is tinker around the edges and hope something will make a difference. It wasn’t the answer I was looking for, but it didn’t surprise me in any way, it actually made far more sense out of the ridiculous things that were said to me when they were doing all the scopes and scans. What they were actually trying to say, wasn’t that they couldn’t find the answer, other than my MS after which I was sent home to get on with, what they were really saying was, they couldn’t help. I just can’t accept that, I may not be able to tolerate the disgusting gunk they want me to drink, but even if it means having to have another tube down my nose and throat to get the stuff into me, well I will accept it and have it. There is always a way around these things and often what it takes, is a little thinking outside of the norm, something I know the medical profession find really hard to do.

 

Please read my blog from 2 years ago today Р05/02/13 РFinding the words 

Well, it has happened at last, Glasgow has had its first fall of Snow! I peeked out around the curtain this morning as Adam said it was snowing before he fell asleep, it clearly had lasted a while as it is more than a covering but already it is turning slushy. The cold that hit me on just moving the curtains was enough for me to……

Solving it for good

Well I made it through the night without being woken by the pain in nose as I did last night, but it is still painful. I didn’t realise until later in the day that it wasn’t just painful, but there was a bright red mark on my nose where the binding of my sleep mask had been lying. So last night I put my mask on just that bit lower so that the binding was touching just the cartilage, it was perfectly comfortable and I went to sleep with no issues. Even first thing this morning I thought all was well, then I headed into the bathroom and the red area is now an inch in length reaching right to the tip of my nose and all of it is painful to touch. I have just taken a pair of scissors and I have cut several slits into the binding so there is no way any real pressure can possibly be put on it later today, not that I could find a reason for it causing pressure in the first place. Why is it that the solutions to problems these days, seem to cause more problems rather than just a straight forward fix, I suppose this point has actually been growing for a long time, but dealing with my PRMS madness just keeps getting harder, taking more and more time searching for answers and costing more and more on failed attempts. It really doesn’t seem that long ago that a small problem would appear and within 24 hours I had the answer and life went on with one more thing that had changed life, but by being solved, not as unfixed and requiring more work.

If I needed proof that I have suddenly jumped into a sensitive phase other than my nose, well it arrived yesterday as well, out of nowhere I am now finding just sitting painful. The pain in my backside started to build ever so slowly over the last week, then bang yesterday evening found me not knowing which side to lean to, or how other than standing up, to relieve the pain. It has to be about 5 months since I last sat on my blow up cushion, but I am sat on it again as I have no choice. Even the bed, despite having just washed everything and all the layers being fluffed up to the max, has started causing pain in my feet, both in my heels and my toes. I have so enjoyed the last few months of not having to think about it for a second and just able to walk, sit or lie down without thinking is my skin going to start screaming at me. To be fare it’s not really the skin, it goes deeper than that, but it has nothing to do with muscles, bone, or anything else other than about a centimetre depth from the surface of my skin inwards and the slightest thing can trigger it in any area of my body. It is times like these that you start to wish that levitation was actually possible.

It doesn’t seem to matter what symptom it is, outside of a few core permanent ones, everything else seems to move around in cycles, not as tightly that you can list them and say this is what will start happening next week or will be the next to reappear, but they clearly seem to take turns at being active. The silly thing is, is you don’t really notice any of them going away, they just slowly start to fade and are gone and your attention has been engulfed by something else that means you don’t even really notice their absence until they reappear. Each time I do notice something like the fact I haven’t sat on my blow up cushion for a while, I actually always go through this hope that that means it will never be needed again, life has shown me that isn’t true, but I never give up hoping. In fact it has shown me not only it will return, the likely hood is that I will be searching for a better solution than the one I had before, as it just isn’t good enough to deal with the next bout, as I said no solution is permanent.

I know that progression never ends and that any symptom I have ever had can return at any second and cause me more and more problems. I also know that there could well be a time ahead of me where symptoms stop disappearing into the background and will stay with me for ever, until I have all of them all the time. Somehow I still find hope and the feeling that I can and will deal with it, when ever, or what ever it does. No I’m not immortal, I didn’t mean that, but I am a coper and it has so far been something I have done quite well, so I can see no reason, so far, why that should end. I guess I work on a belief that if I could survive yesterday, then I can survive today and that is all that really matters.

 

Please read my blog from 2 years ago today Р29/12/12 РReaching into the dark 

About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment……