A personal sanctury

I have woke up in pain this morning, a pain so bad that I hardly knew how to walk when I first stood up, yet I slept all night. I really don’t understand pain, you would think that by now I would be an expert yet it still surprises and confuses me. Once again, the pain is all around my mid region, but worst over my kidneys and yet again going for a pee when I woke was almost a waste of time. I am sure that just like as has happened in the past, sometime in the next hour I will go again and pee for Scotland. I don’t get it at all, but when you are being sliced in two by razor wire, getting anything is pretty hard. I am just hoping that when I take my meds in the fifteen minutes that they will bring with them an improvement. If there is one thing I wish I understood, it has to be how on earth did I sleep through this pain for however many hours it took to get this bad? I have had lesser pains that have found me up and sitting in the kitchen praying for improvement so that I could find sleep again, yet something that I would put in the hell brackets, I sleep through? I may not understand it, but I am so glad that I do. Sometimes I do find myself asking questions that I don’t want anyone to investigate in any way, as I know that what I am questioning is a complete blessing. Unless, of course, they can tell me how to sleep through the lesser pains as well.

Adam had taken today off work as he has rather a backlog of things that he needs to complete for his college course and just like the rest of his life, he has left it all to the last minute. Actually, I’m not being fair on him saying that as he has improved a huge amount over this year. Those few weeks that we had at the start of this year when we talked over a million things and sorted out many events of the past that hadn’t been dealt with, have really made a huge difference to him in more ways than one. I find myself even now doing what I know is the wrong thing, not telling him at the time what is happening to me. It hard though to admit that you’re not dealing totally with your own silly body. I find little point in worrying him, rather than letting him read it after the event when he knows and can see that I am still alive and still working my way through life. Like right now, what would be the point in telling him that the pain is so bad that I just want to disappear back into my bed. He would say “go then”, and then spend the next hour worrying that something major has gone wrong. I guess we balance each other really, I worry about little and he worries about everything.

I don’t know why or how my body has developed this ability to shut out severe pain by sleeping, but it knows it too. Whenever my pain levels are elevated, my instant reaction is to want to go to bed. That message screams its way through my head almost as loudly as the pain does. It is one of the reasons that fear becoming bedbound, as either I will just sleep forever or worse still, will the magic of bed, lose its power, leaving me in pain that I can’t escape. It’s odd how we all put such high values on what after all is just another piece of furniture. From childhood on, our beds are our safe place our sanctuary and once there we are protected from all evil, even the monsters underneath them. As my health slowly goes, our bed has become somewhere to escape to, which is probably part of the reason that I refuse to have a TV in the bedroom. Bed is the totally wrong place to have anything that will distract you from the reason of being there. Which is yet another reason that I hate the idea of being bedbound. There is no way that I will be able to stand not being able to have the TV, if I am stuck there with nowhere else to go, yet the idea of that box crossing the threshold of my sanctuary, still seems so wrong, even in that context.

There is one odd thing that I have noticed recently, on the morning that I wake in pain like this but haven’t been up during the night, I always seem to wake with a headache and my limbs a stiff. I really do get the impression that they are nights when I honestly don’t move an inch, not even my legs which according to Adam have always been active. Sleeping on my back doesn’t seem to have changed that, in fact, it is worse as my legs now manage to totally escape the bed so that my feet are on the floor. Restless leg syndrome is well known and can happen to anyone, even without any of the conditions that I have. Those of us with MS are more likely to have than others and, of course, that means my body just had to join in. Their night time wondering is bad enough, but they do seem to have the ability to move by themselves while awake as well and the weird sensations are something else. Years ago I thought it was part of my PRMS and it might still be, but when I read up about it, I couldn’t believe that for once what I read actually matched. Odd sensations like my skin is actually crawling, or that there is liquid, i.e. blood running down the outside of them, were universal. To be fair though, this is a condition that I have, but Adam suffers the worst from, his sleep is often disturbed by it while I sleep soundly. My torso and head may not be moving at all but my legs and arms are all over the place and yes it does affect your arms as well.

Sleep for me isn’t always a peaceful process, but activities or not, it is an escape. Last night I believe it was a deeper escape as there was little evidence that I was on the move, even the duvet that I tuck around my feet when I go to sleep was still tucked tightly. Yet here I am three hours after waking and still in the pain, although, at a lower level at last, that was there when I woke. My headache has gone, either because I am now distracted or whatever caused it is fixed, as is the pain I had in my neck and left shoulder. It appears that not a single second of my life isn’t changed in some way by this illness that I live with. Awake or asleep, it is always making it mark and makes sure I am aware of it eventually, if not at the time.

Read my blog from 2 years ago today – 28/05/13 – Doctors and possibilities

The phone call has been made, so there is no going back now, I am expecting the Doctor here sometime after 1:30pm, unless of course he phones me instead. I still would rather see him as the problems are growing and there has been for me no resolution to the all the tests that found nothing. There may have been nothing inside my gut, but something still…..

Living in a threat

Sometimes I just wish that I could feel like the old me, even if it were just for a couple of hours. Everyone sees me as being such a strong person, someone who is alway positive about life and doesn’t get pulled down by anything. Mainly they are the people who don’t really know me that well. I guess when you learned as a child to live behind a screen, to hold bravado as the strongest trait anyone can have, well you carry it on right the way through your life. Those who have read from the start, right the way through today, well they might know a little better that behind the person who writes as though the world is a wonderful place, is someone who is just as scared about every single step they take and where their life is going, just like every other single person on this planet. I used to think that there would be a point in life when all that fear would drop away and I would really have all the answers to all those things that as children we think adults understand and know, but are hiding from us for some warped reason, only to find the truth is they knew just as little as we did. Don’t get me wrong, I do have and always have had days when life was just good and the problems around it didn’t matter, not for a single second, and I still do have them, but then I remember and it all looks so different. I am as vulnerable to life’s ups and downs as everyone is and just like everyone else, if someone was to walk into this room right now, I would smile and disappear behind my screen again, simply because you can’t spend your life in a constant state of fear and those around us don’t need ours added to theirs. So today is a day when I can see all the bad things, all the things that I normally brush aside and smile at, not sweetly but in with a threat attached, it’s a day where I feel cold and in need of crawling back into bed, not to sleep, but just for that simple childhood comfort that bed brings with it.

So where did that all come from, well the first line, I just want to feel like the old me, the one who wasn’t ill all the time, the one who wasn’t in pain and didn’t spend their life trying to find something, anything that mades them feel better. I actually envy those who have relapse-remitting MS, because I do still remember the joy of being in remission when OK my body was still showing the signs that something was wrong, but at least I could still manage a normal life. To be honest, I don’t think there is anything crueler than a progressive condition as it takes your entire life and turns it into a threat. It’s a constant glimpse of your future with the knowledge that it is still just practicing for the main event and that once it has mastered everything, it will be so much worse. You can’t help looking backwards and trying to work out the exact path that each symptom has taken, trying to work out that angle you might see on a graph and then to extrapolate them off into some mad planet you can’t even imagine. There is a fact that I have noticed and that is there is never a point that you can say this can’t get worse. I have hit far too many points when I believed that I had reached the worst it could possibly ever go, just to find out it wasn’t the worst at all, there is still more it can do. Everyone has these scales in their head, scales for different sensations, for example, pain, we have a 1 to 10 and we know where on that scale the pain we are feeling is. Simple, no. The problem starts with a small fact, none of us are working on the exact same scale in the first place, they are all individual and dependent on our own life experiences. Life experiences change as time goes on, when your symptom reaches that number 10 on your scale, where do you go? All you can do is rebuild that scale, what was 10 has to move downwards as there always has to be space as we now know it can get worse, so does 10 become 9, 8 or even 7? Progression means it is going to get worse, so how bad can it get and which bit is the worst, what does our future really hold once you have gone past the worst you thought it could get and you know there is more to come?

Beside those scales that measure our symptoms, are the scales of time, how long is quick or even slow? No one can tell me how long any of the symptoms I have will take to get to their final position, will it be another year or 5 years before I can’t breath without help, will my bowels stand up to another 10 years of not working without dynamite attached, or will they give in totally and require intervention? PRMS is blind progression, blind because not even the experts can give me the slightest idea of what will happen when or even next and to live like this is really some kind of cruel joke, without any hope of laughter at the end. Is it any surprise that I hide behind screens, not just for others but for myself as not even I want to think about all of this all the time, but then there are days like this when it brakes through and my mind is filled with a million questions without one single answer. I used to get angry with the doctors for not diagnosing what was wrong with me when I first went to them in my 20’s begging them for some help, in an odd way, well I am now glad that they got it wrong as I at least had part of my life being totally blind to the truth. Years of being treated for all the wrong things actually were years when yes I was ill, but I convinced myself that I could survive as clearly I wasn’t any more ill than the next person, as if the doctors could find nothing, then maybe they were right and I was just a wimp and yes I know I have written about that before. Oddly, I heard someone else on TV the other day saying just the same thing and just like it was for me, she too was relieved to find out that she was really ill and that there were other out there who shared just what she was going through.

Without our screen, those places we can not so much hide but shield ourselves with, progressive illness wouldn’t just drive us into a deep depression, it would drive us totally mad. Yes, I do live in a fantasy world, where I tell myself that I am fine and that I can still deal with life and all it throws at me, but the only other option is one I don’t believe helps to even think about. That strength that everyone talks about, the ability to move forwards when what is ahead of us is unthinkable, could just as easily be seen as madness, as who on earth pushes onwards when what is ahead of them is a living hell? We do, the people who still remember just how special this whole business of living is, the people who have already lived through more than anyone should and know that they can still live well through more than even they can imagine.

Read my blog from 2 years ago today – 29/03/13 – They are married! > http://bit.ly/XLGbZS

A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters….

Busy, busy, busy

There are days when you just throw yourself into hell, because there is no other option. Two nights ago I woke totally soaked in sweat, it wasn’t just me but the entire bed that was so wet, that I honestly thought I could ring them out and see the water not just dripping but flowing. I have been on HRT for about 9 months now, so why it happened I have no idea as the house and bed weren’t particularly warm, reason or not the facts were there and all I could do was get up and try to find a way of fixing it. I haven’t had the strength to do a full bed change for a long time, it was actually one of the first things that Adam took over from me, so I decided to put a towel over the mattress and turn the duvet over so the upper part of the cover was over me. I lay in bed for about 15 minutes when I was aware that the towel was now wet and the duvet felt damp on my skin, my night was over. Like the majority of the world, I don’t have a spare duvet and mattress toppers, so the only thing that could be done was a marathon washing of everything on the bed. It actually had been a while since it had all been washed and my night time sweat was in many ways the final straw for me, just changing the sheets wasn’t going to be enough, it really all had to visit the washing machine. Adam kicked it off the next night by washing two of the toppers and I took over yesterday morning with Adams help, with the duvet, when he left the house for work I just had to add all the powders and so on to the machine and set it going, but yesterday was also shopping day.

Just after 11am it arrived and like every Christmas shop there appeared to be more in my hallway than two people could ever use, but I knew it was probably just about right. It took me a whole hour sat on my perching stool to sort through and remove all the excess packaging, repackage in cling film or plastic bags and store in our fridge freezer, in the process filling an entire bin with stuff no one needs. By the time it was done I felt as though I had been to the shops myself and carried it all home as well. The worst offenders where the fish and meat packaging, I don’t really eat much meat and Adam cooks for himself these days as I just can’t eat what he does and not at the time of day he likes to eat either. Christmas and New Year is the only when we eat the same and we eat the foods that I personally would love to eat daily, but we just can’t afford. Not many can afford to eat smoked salmon, pancetta, stuffed trout and so on, yes I have expensive tastes that only get fulfilled in these two weeks of any year. If I am being totally honest it isn’t just the cost, I find meat and so on really difficult to swallow and what they do to my insides, well isn’t worth thinking about. Christmas though is just a few days, days when I say to hell with what my health want’s and hello to all the flavours, texture, colours and smells that set my taste buds alight. Adam prefers the simpler foods, but also enjoys the treats that Christmas bring when they appear in front of him, if I didn’t buy them, he would never even think about eating any of it. The washing machine had stopped just as the shopping arrived, but I didn’t want to shift machines until the fresh and frozen food was stowed, I didn’t think the heat of the tumble dryer would do them any good. Shifting the duvet took a huge effort, despite having given it an extra spin, then having to use my already dead arms to push it into the tumble dryer, left me just wanting to collapse on the floor and stay there. There wasn’t a muscle left that hadn’t died and given up, but it was done and I was at last free to came back through here elated by the fact I knew that all those treats were waiting and leaving the rest of the shopping for Adam to shift when he came home at lunchtime.

There was no covering up how I felt when he did arrive home and he clearly wasn’t impressed that I had pushed myself that hard, but he knew what my answer would be so he said little and just set to shifting the coke bottles and so on to clear the hallway and to put his mind at rest. Regardless of weather he always comes home on shopping day as he has this idea fixed in his head that I will trip over it if he doesn’t shift it first. It doesn’t matter how many times I try to tell him that if I am going to fall, I will fall and it has nothing to do with falling over things. I may not have the greatest memory or eyesight, but I have never fallen over any shopping ever, but he says that he just wouldn’t know what to say to my daughter Teressa if I fell and broke my hip, just because he didn’t come home and make sure the floor was clear or obstetrical, it’s really hard not to love him. I couldn’t cover up being tired, I was beyond that point, but I managed to convince him that I would come round again, all I needed was a rest and a chance for my body to catch up with the world again. But I could as always cover up to a huge degree the pain that had by then started to break through, before he went back to work we together pulled the duvet out, shook it, changed ends and stuffed it back into the machine as one session clearly wasn’t going to be enough. I wasn’t aware of it at the time, but realised later that I had been a little snappy with him when he didn’t click as to the fact I wanted it back in the machine, well what else would I do with a wet duvet, all to often recently there is something that gives me away when I try to pull the wool over his eyes. It took another two runs and as soon as it was done, I started the washing machine again, with the final mattress topper. We have an old fashion pulley on the kitchen ceiling, so I lowered it and spread the duvet over the poles so it could air and the final slight dampness could vanish, yanking the ropes to lift it back to roof level was a real killer and the final straw, I went straight to bed, as I climbed into the odd selection of items I had put together to substitute for bedding I took my second booster pill of the day.

I had been asleep for an hour when the door bell rang, it was a parcel for me from Boots, again. Ironically the parcel was my order of my sleep mask and ear plugs and despite aching from head to toe and wishing I had had another half hours sleep at least, I couldn’t help but have a little laugh to myself. I had pushed myself to the limit yesterday, for a fit person it would have been water off a ducks back, for me it was as though I had stuffed a weeks worth of activity into 7 hours and my body was letting me know what it thought of me. I was so glad that Adam would be home soon and could take over the rest of the work needed to finish off the washing and then to remake the bed, if he hadn’t been, I would have spent last night just as I had my afternoon nap, on but not in a bed. There is nothing on this planet like climbing into a bed where every element of it has been washed and is plumped up and so soft that it feels like lying in a cloud, despite that I new how my body was feeling and I was so tired that I couldn’t bare the idea of being woken by anything, so booster 3 was swallowed and I gave my earplugs and sleep mask their first experimental use.

I woke with the alarm, the earplugs and mask had worked almost perfectly. I did wake for a few seconds before the alarm sounded and had pulled the mask off to check the time, before slipping back into sleep for another 15 minutes. The world may sound muffled and distant when you stuff little cylinders of foam into your ears, but when it comes to sleep, well they are the magic pill. As for the mask, well I managed without issue to sleep with it on, but I think it might be more a day time accessory, at least in the winter, I have had blackout curtains for years, but there is always a strip of light that bounces of the bay ceiling when it is a sunny day, or even dawn, but I would recommend them to anyone, odd looking or not, sleep is important.

This morning, well yes I still ache everywhere and I have a sleepiness that is actually on the pleasant side, tiredness isn’t always draining and deadly, tiredness left from a good night sleep is actually almost nice, as it’s warm and cocooning not flattening and oppressive. I know I did far far too much yesterday and that I will probably physically pay for it for a couple of days, but sometimes we don’t have a choice, the only door open is the one marked hell.


Please read my blog from 2 years ago today – 24/12/12 – Christmas eve 

At this point in the year from the first Christmas I remember I would have been over bubbling with excitement, I never quite grew out of that. You have probably noticed that sentence is written in the past tense, I no longer somehow feel that way, another casualty of my health. Christmas was a magic filled…….

A simple choice

I got up this morning actually really looking forward to what I expected to be a straightforward day as yesterday afternoon, Twitter eventually fixed the issue allowing me to log in and be part of the community again, rather than just an observer who was only allowed to tweet if I scheduled it for a later time. Everything seemed fine, I could follow, like, favourite and tweet, perfect I thought, then I tried to see who had interacted with tweets, only to find some bright spark developer has changed the program as they often do but has manage to make it such that you have no idea who likes or favourites anything, there is just a total. There is a workaround using other platforms, but it is so slow that it just isn’t practical. I really wish that developers would leave things alone, I know they would be out of a job if they did, but to me, a good developer makes changes that helps people, not annoys the hell out of them! I put a tweet out asking to be sure that it wasn’t just me and at least it is not this time.

The more I have thought about yesterday’s palaver over my hospital appointment, the more bizarre the whole things seems. I have like every person out there with poor health have had to rearrange hospital appointments for one reason or another, just occasionally I have totally cancelled appointments because the appointment took so long to come through that the reason for it has healed, just like yesterday, but not once in my life have I had the hospital phone my GP and my GP then call me, to push me into rearranging it. I can’t help but get the feeling that they really do think there is something more there than just a difficult to heal ulcer. I know the mouth is supposed to be the quickest healing part of our body, but as I know all too well there are always exceptions to the rule. I guess I will find out when we go there in a couple of weeks time, the date actually works well as Adam is off work that week, so there is no need for him to arrange emergency time off. Why is it in life when you think you are doing the right thing by not wasting other peoples time and money, that that right thing turns out to be totally wrong.

It seems that this week is doomed to just be wrong, everything even the little things in life just don’t seem to be working correctly. Adam thought last night that he would be helpful and rearrange the bed before I went to sleep, I came into the room to find him moving my pillows, but I could see he had done something else but it didn’t click until I got into bed and lay down. He had shifted the mattress by a few inches, it has a habit of working its way over the edge of the frame but he had moved it another 2 inches past that, so when I lay down, I was on the edge of the mattress, with pillows no longer shaped to my head and the edge of the mattress topper sticking into my arm, everything felt wrong. I don’t know what it is about beds, but if they are not just right, the whole purpose of being on them is totally lost. I know I do have a bit of the princess and the pea thing going on with my body, but even before that started, beds just have to be right. I know it is one of the reasons I hate having to stay in a hospital, that along with the noise of other people, but I also think it is part of the reason I don’t like going away on holiday. There was no way I was going to be able to sleep, so I had to get up and undo everything he had done, then thump to submission my pillows, before climbing back in, trust me, my muscles don’t like that kind of excursion, at least I was just seconds from sleep.

I have a feeling that if you asked the majority of people with either Fibro or MS they too would tell you that our beds are the most important thing in our homes, not just because we spend so much time in them, but because it is often the only place that we can find comfort and some peace from the pain. I know that there are days when the constant thought in the back of my head is a counting down clock, ticking down the minutes until I can head back there, it is like some kind of womb, the only thing it doesn’t give me is food. I was the person who never stayed a second longer in my bed than I absolutely had to, someone who saw going to bed and having to sleep, as more of a punishment rather than a slice of heaven. Now, now the second I have done what I do in my daily routine and once I have spent a couple of hours with Adam, the only thing in my head, is bed. I don’t understand how though it is that I now seem to have this switch inside me, that regardless whether I think I really need to sleep or not at night, within seconds of going horizontal, I am asleep. In the day, well not always, but even if I don’t sleep I can lie there just enjoying the fact I am motionless, in a dark and warm place where my body is supported and my muscles can do what they want the most, to rest. When my lungs started playing up, I went through a spell where I found sleep not such a great thing, having my lungs feeling like someone was sitting on them, well lets say it was enough to take away the gloss. These days I no longer lie flat, the elevator that was fitted to help me get out of bed, turned into a huge blessing as it means I can sleep with the top half of me raised slightly, it isn’t a cure, but it sure helps.

I know after reading that that those who don’t have my conditions will be wondering why I don’t just stay there if it makes such a difference, why don’t I, well that’s easy, I don’t want to miss my life. I know my life isn’t the most exciting or the most glamorous, but it’s the only life I have and I want to make the most of it, not spend it with my eyes totally shut, I miss enough as it is. That was the simple answer, there is a deeper one as well, the fact is the time will come when I have no choice, choice is one of those things that we all have and most of us think nothing of it. We make choices all the time without even knowing we are, will we take a sip of drink now, or in a minute, shall we wear this outfit or that, those shoes or the other ones. Choices fill every waking second of our lives, but just as your health goes, so do our number of choices and more importantly our free will. It doesn’t matter any longer what it is I want to do, what matters is what I am capable of doing. I can right now make the choice to be sat here doing what I do, I am not going to let go of that any sooner than I absolutely have to.


Please read my blog from 2 years ago today – 20/10/12 – Peace is returning 

Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have…..