It just keeps coming

Posted on June 21, 2016 by livinginalimitedword

“I wet the bed.” “Last night, I, wet the bed.” I’ve been saying it over and over in my head all morning, as I honestly don’t believe what happened, but it did. I had woken just after 4 am as I was freezing. When I pulled back my sleep mask the reason was clear, I had totally thrown the duvet onto the floor. Something else I don’t believe, but there it was, just holding onto one corner by my right foot. The solution was simple, sit up and pull it back over myself. Once I laid back down, I started running the idea of going back to sleep, now that I was warm. Sleep glorious sleep. Then I remembered that I have been having a mild issue with leakage, nothing much, a few drops or at the worst, an eggcup full passed as I tried to reach the bathroom. I didn’t feel like going at all, but I decided that it was better to be safe, rather than sorry, so once more I sat up, this time, I swung my legs over the edge, and I put my hand on a wet patch a the side of the mattress. I knew that I must have been overheating, because of the position of the duvet, but this was too wet, and not where I expected it to be. It was then that I realised my lower back was wet, and I swung my arm behind me, the bed was soaking. Not damp, it was soaking wet. Clearly, “I had wet the bed”.

I’ve always known it was a future possibility, so much so, we had been stockpiling spare sheets, each time I bought a new set for the bed. Somehow, though, I never thought it would have been like this. If I hadn’t thrown the duvet off me, I would have just kept sleeping, totally unaware of it all. But here I was, awake and wet, with a wet bed. I headed for the loo, to be sure that my bladder was empty, and to wash myself down with the wipes I carry in the bag hung on my wheelchair. It was only 4:16, I couldn’t wake Adam, not this early, but what could I do? I don’t have the strength to change all the bedding, but I had to do something, I just wasn’t sure what?

After chain smoking three cigarettes, I headed back to the bedroom. There was an old towel that I found the other day, in the bottom of the wardrobe, when I was sorting out my draws. When I found it, I didn’t have a clue, where it had come from or why I had it at all. I was so confused that I brought it out and placed it on the kitchen counter, to see if Adam knew the answer. At first, he too questions, then remembered. When we redid the bathroom, about 6 years ago now, I had spent quite a lot on a really good set of towels. We hadn’t had them a month, when Adam washed two of them, along with some black socks. They were ruined. He spent days trying to find them online, without telling me anything about it. Eventually, he found them and bought two replacements and snuck them into the cupboard. Then told me. He knew that I had not only invested a lot of money in the bathroom but also a lot of time and creativity. He also knew that I wouldn’t be amused by his carelessness. He was right, but I would have just done, exactly what he did, replaced them, the difference being, I knew where I bought them. The towel in my wardrobe was one of those, one I put there, for exactly the possibility that I might wet the bed.

There was some kind of strange thing going on here, that last week, I found the very towel that I needed to be able to sleep, and that was just what I did. There was one thought though in my head as I drifted off, I had to somehow wake around 7am, not the 8:30 that the alarm was set for. Another thing that I can’t do, I can reset the alarm. It was all down to luck. 7am on the nail, I woke. I got dressed knowing that my next task was waking Adam and facing him, while I told him what had happened overnight. I found myself feeling just as I guess my son Christopher must have done when he came to tell me that he had done the same overnight. No scared, because no one was told off, just upset that it had happened. As I said, we knew that this day would come, I have had issues with my bladder from almost the start, but that didn’t make it any easier. The sheet, towel and the two mattress toppers went through the washing machine and tumble dryer. I had it all done before Adam came home. He had set the first load running, and then placed the rest, where I could manage it from my chair.

My body is falling apart at a speed I never expect it to. Since January, I have hardly gone past a couple of weeks, without something else causing me problems. Yesterday, I posed the possibility that there is a new lesion on my spine, today, I really think, that is the issue. From my neck down, I am falling apart at full speed, and yes, I have been sat here with tears running down my face, as I have been writing this. There were none earlier, something I don’t understand. I know that Adam was ready for them, as he kept coming across to me and holding me. He even phoned half way through the morning, but the tears didn’t appear until I started to write. I can’t wait to see what it will do to me next.

Please read my blog from 2 years ago today – 21/06/2014 – There is no control

I had to go to my bed early last night, I just couldn’t stay awake any longer and I felt like I would die on the spot, well die might be an exaggeration, pass out would be much closer. Most of the day I had been struggling, it was difficult to feel anything about anything, but I guess it was to be expected following the morning I had. I was right, sitting writing did make it all worse as within an hour or so, I began to just feel like I have been all week, but the exhaustion was somehow deeper, as though…..

I hate me

Posted on June 20, 2016 by livinginalimitedword

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

Posted on June 12, 2016 by livinginalimitedword

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……

Who needs rest?

Posted on June 9, 2016 by livinginalimitedword

It started with, “I’m worried about tomorrow”, not a great opener, but it led to my pouring out my torn and shredded heart. It was 8 pm, time for my meds and I had just joined Adam in the kitchen. We hadn’t spoken in detail since the Social worker, Karen, (yes, I at last. have her name) had left on Friday. It had become a closed book, other than the odd words over how I had gotten the time wrong and so on. I was doing my usual, putting on a brave face and telling myself that I could manage this. After all, it’s just someone here to help me in the shower. The fact that it’s now just 4:30 am on Wednesday morning, should tell you that I am coping at all.

As is often the way, with the first word out, the rest just kept coming and coming. There was a stilted conversation while I tried to use my nebulizer, but as soon as it was done, then the truth started to flow. I have never given anyone even the slightest speck of control, since, I walked away from my first marriage. Something Adam was aware of from day one when it took over his life as well as mine. Like it or not, he was going to have a job, eat proper meals and be part of my world. I didn’t mean any harm by it, and he somehow knew that even before I told him about my lifetime of abuse, from childhood to meeting him. But when the floodgates were open, there was no closing them.

Today isn’t just about getting help, it is about asking for it, about the beginning of giving away that last independence that I have, and that is so huge, it is suffocating me. I apologised for not letting him help me, I went through all the reasons, all the things that I have justified in my head about why I couldn’t do so, even though I knew all of it is stupid, I still can’t do it. I told him in ways I don’t think I have ever told him before of the pain that I feel, not physically, but mentally because of this stupid illness that is killing me, as there is nothing that I or anyone can do about it. Between him handing me more and more tissues, I admitted just how scared I am about losing even the slightest bit of control I have left. As I blubbed and he held me, I suddenly realised that the look on his face was reading in not the way I expected, there was something there, that made me stop for a moment. “I’m not giving up, I am not going to let this beat me”. He took a deep breath, “I’m glad that you said that, as I was beginning to think this was the start of the long goodbye”. He could read my pain, but had lost my determination to go on.

For me, this handing over control is like stepping back, into a time that I fought so hard to escape. He tried so hard to tell me that I am still in control, that they are here to help me, not control me, but it doesn’t feel that way. We both realise now that we chose the wrong day, again because I am led by what other say. Either Adam should have been off for this first visit, or we should have arranged it for the Sunday. Having him here, even in a different room might just have made it that bit easier. He is the only person who I trust to take care of me, to guide me and to think for me. As my brain gets more and more muddled, I need his to keep me on the right track, to fill in the bits that I miss, or don’t understand. I know that I ask a lot of him, but he keeps telling me that he wouldn’t have it any other way. He fell in love with me and chose to take the vows that he is more than happy to live with, in sickness and in health. We have just been unlucky that it isn’t the latter.

In the grander scheme it is a tiny thing, but last night I asked him how many more mornings I had to take the Steroids. His answer was just one more, so I double checked with him that he meant that yesterday morning was the last, or was there another. Either I miss read his words, or him mine, but either way, the results was wrong, I have another dose this morning. As I said small, but those sort of confused screw my head big time. Just like the mistakes during the Friday assessment, if the detail is wrong, I will fret unknowingly, somewhere in the back of my mind, desperately trying to make sense out of something that doesn’t add up, but I don’t know why. We spoke for nearly an hour, going over feeling and the help that I need from him to survive what is, after all, a totally new phase of life for me. He now understands that I need him to be accurate, to not miss what I don’t see. To guide me even more than he has done up to date, plus to double check that I really do understand, that I’m not just brushing it aside or not hearing his, or others words.

Right now, and not just because of the time, I should be resting, I am in the midst of a flare, dealing with a body that is making all of this harder than it would have been just a month ago. I should be resting, letting my body have the best possible chance of healing, but instead, I am stressed to a level I haven’t felt in years. I can’t do the slightest thing about it, other than to go with the flow, to do what I have to and to survive it all, as I have done up to date. I know one thing for a fact, today isn’t the day, that I started that “long goodbye”, one day I will, but I am still a long way from it, especially, if I can get my head around accepting the help that I so desperately need, and Adam can’t give me, not because of him, but because of me, which kind of makes the whole thing harder, as it is myself, that is letting me down.

Please read my blog from 2 years ago today – 09/06/2014 – Muscles, what muscles

All too often things happen that you don’t even notice until suddenly something happens and you realise the truth of what has slowly been happening all along. I was lying down yesterday with my feet drawn up so that my knees were off the bed and in the air, I don’t know why I suddenly put myself in that position as I haven’t lain in bed like that for years. But there I was with my both feet flat on……

I never stop learning

Posted on June 8, 2016 by livinginalimitedword

On Sunday, I struggled through what I hope was my last shower alone. It was actually a really odd shower, as I spent the whole thing looking for those points where realistically I need help. To my surprise, there were far more points of struggle, and even danger, than I had ever noticed before.

When you are just doing things, because they have to be done, you just do them regardless of their difficulty. From start to finish, it was pretty much a disaster, and one filled with so many danger points, that I began to wonder how I have been managing at all. My simple analysis from start to end proved what I already knew, the shower head spends more time on the floor than it does, actually pouring water over me. When we had the shower installed, I made a huge mistake of putting the fold-down seat directly below the shower pole. The result is that I have water pouring onto my head, somewhere that I don’t only find painful, but as anyone who cares for their hair will tell you, just removes shampoo and conditioner as soon as you put them on, not much use at all. For a long time, I have been thinking about adding another pole to the adjacent wall at a lower level, I could then control the flow and most importantly the direction, with much more care. I also think that it won’t just help me, but will help the carer who is coming to help me.

When it comes to washing my body, I have found that there are more parts of me, that I couldn’t really reach than I expected. I knew that the only way that most of my back has been washed for a long time, is while I am actually washing my hair, and during my final rinse, in other words, not at all. I have only been able to manage a cursory stab at my feet, and even parts of my legs don’t do much better. I have relied on the extra length that my razor offers to not just remove the hair, but hopefully the dirt as well.

Since my legs went just over six months ago, I can only say that luck must have been on my side. Getting dry, is nothing else other than an accident zone, waiting to happen. Without help, I have been up and down like a yo-yo, collecting towels, sitting, twisting and trying to dry myself just a little, before having to stand up again. The grab rails we installed several months ago have made it easier, but drying yourself one handed with a large heavy bath sheet, is ni on impossible. A combination of air drying, and sitting with the towel wrapped around me in my wheelchair when I can no longer reach anymore, or my legs don’t want to play this silly game any longer, has had to suffice. I have been accepting Adams help when it came to my feet, as my system had resulted in the skin scaling between my toes and in fact, all around the rest of my feet. He has achieved a huge improvement, but, is still scared of rubbing them quite as hard as they need to be.

Even once dry and dressed with Adams help, I still have to return to the bathroom to sort out those areas, where I have been using kitchen paper towel to ensure complete dryness. I have due to my cesarean scar, a large flap of skin that if it isn’t totally dry, rots. It’s not just there, but also under my breasts that have to be dry, before covering the skin with Savlon. You would think that knowing that has to be done, would be enough to ensure that I carried it out. but it isn’t. If I am not reminded, within 36 hours, they all begins to hurt and produce a someone unfriendly smell. The real problem is the loss of sensation, I don’t feel the pain and anyone else would, occasionally a mild stinging, but nothing more than that.

Having now only had a shower once a week, for the last few years, it has allowed Adam a whole week in which to wash my pajamas, socks, and dressing gown. Two weekly showers are going to put a huge strain on that system. For the first time in 5 years, I actually bought myself something new to wear, three new pairs of pajamas and a spare pair of trousers. All of which, apart from one of the tops, should be here today. Which means that this afternoon, I actually have to do some real work. Somehow, I need to clean out the draws in my bedroom, which have been holding a mixture of things I haven’t even seen in years. Years ago I offered not just to clean out the draws, but also my wardrobe, as nothing in either is of any use to me and Adam, really needs more storage. Over my years of immobility, I have ballooned from a size 8 to a size 22, virtually nothing I have is of any use to me. To date, he refuses to accept this offer as he sees it as my space, even when it’s space I don’t need. Yes, I need two of the four draws and some wardrobe space, but he can have most of it.

On the surface, asking someone to help you shower, sounds like nothing, but it is changing everything in ways that I never thought about. I have already had two sleepless nights about it. When they asked me “What time would you be ready for your shower in the morning?”, I was led by the word “morning”. The thing is, I don’t, I shower in the afternoon, between 3:00 and 3:30 usually, but being led, made me answer 9:30am. To do that, would cause me a total shack up of my routine and it was distressing me in ways that just weren’t worth it, long before I even started. I tried for two days to do what would achieve their plan, not showering, just all it would take to be ready. I couldn’t make it work in my head, and for me, that is where it matters. One phone call from Adam fixed it as closely as they could, it will now be 4 pm, something I can handle.

The whole of that is just another example of what goes on in my head, and how if I am led, I can land up anywhere. Right now, my spoken word is a total mess, I’m not sure if it is the flare or the steroids, but when I talk, I can get no more than seven words out, before forgetting what I am saying, or what the next word should be. At it’s worst, it’s every couple of words. All morning I feel fine, other than my hands and legs, then the phone rings, and I try to talk and the truth appears in a way it can’t be hidden. By evening, it is far worse, but fatigue amplifies everything. I am in no doubt now that I am in a flare, but if the steroids are helping or not, I’m not totally sure. They are not a panacea, and have been used for years because they can make a change, nothing new has been found that works any better. Which is just another sign of how little work is really being done in the field of MS. With me having PRMS, the chances of them fixing everything, is extremely thin, my condition rarely does what other forms do, and most of the time, I am on my own. My hands are that bit better, I can at least feel all of my fingers, but using them is very hit and miss. My legs which were fine to begin with, joined in over the weekend, there has been no change there. Although they have been collapsing for months, they are now also telling me they are going to do it, which is off-putting whenever I stand, especially as it makes me move slower, increasing the danger. All I can do is hold on, and wait. That is a continuing story, waiting and more waiting, as there is nothing more anyone can do.

Please read my blog from 2 years ago today – 08/06/2014 – When and how

I remember quite clearly my Mother and even my Grandmother complaining that they didn’t understand the world any longer. I used to laugh inside because I always thought that they were referring to the changing technology, the gizmo’s and gadgets that we these days wouldn’t use as they would already be seen as old fashioned. Now I wonder if what they really were talking about, was something…..