Banished demons

Posted on July 25, 2016 by livinginalimitedword

I haven’t given an update recently on how things are going with my new army of carers. Much to my surprise, I have to admit that it’s not working out badly. It’s six weeks now that I have had my army of ladies here to wash me, and I have to admit, that I am really enjoying being clean. You don’t realise until someone else helps you, just how much of your body hasn’t had a really good scrub for far too long. It’s all very well letting the water pass over you, but the sensation of a someone giving your back a real good scrub can be totally sublime. I am finding it far easier to be around others as the days have clocked up. I have to admit that the first couple of days, there was a huge amount of bravado. I was flinging my clothes off and acting as though it was perfectly normal to find myself totally naked in front of a stranger. The truth was that I was far from comfortable and quite honestly, I wanted them to just get out of my home. This week, with the temperatures soaring, has meant that I was actually looking forward to the bell ringing and the promise of getting rid of that feeling, that my clothes were stuck to me. Which even I admit is quite a turnaround.

One of the problems of being housebound is that you slowly forget how to act around people. You become set in your ways and a having to allow others to intrude into your world is hard. There is very much a feeling that they are here to upset you, not help you. I guess that is why, for the first six weeks they send in the rehab carers. They normally go out to help those who have just come out of the hospital after a long stay, settle back into normal life. They spend their time trying to make them care for themselves, with all the daily things that people have to do. That can go from cooking to bathing and onwards, just to be sure that they can manage on their own. I too had the rehab carers and I have to admit that I needed them. They coaxed me out of that shell I had built around myself, as I taught them, just what help I needed. On both sides, it is clear that I can’t manage on my own, they aren’t going to be able to teach me any tricks so I could shower alone, as there aren’t any, but they have taught me how to be a human again, and to be not so precious, about what is mine and how I do things. I thought that having strangers around me, was going to be the biggest hurdle, now, well I don’t really mind which one turns up so much, as how much I need to teach them. I still find having to tell people the same thing as I told the one before, really irritating, but I’m learning not to bite.

I have to admit that I found I went through pretty much the same with the district nurses. They have only been here for about three weeks, and yes, they are here for a very different reason, more to help my body, than to help me. I doubt that I will even find it easy to lie down on my bed naked and let them pump in an enema, it’s not exactly the most elegant process and never will be. The fact that they don’t just do the work and leave me lying there, does make it far more bearable. I’m not sure why, but them taking me to the toilet before they go, makes it feel more normal, but it does, as does the fact that they all take their time to chat with me, from when they arrive, until they go. As for the actual results, well that’s not going so well. I did have high hopes at first as each one worked, sometimes not in the way I expected, but my bowels being emptied was always achieved. That was until last week, the last two of them have failed totally. They are due here again tomorrow, which I have to say, I’m quite pleased about.

Just having people here has really changed the way that I feel, and that I act. Simple things like making sure that I am dressed better than I was a few weeks ago, that I have my day organised around their being here, rather than around what I want to do. It changes the way that you think and the way that you feel in ways I wouldn’t have expected. There have been so many changes, most subtle and most that I doubt even Adam has noticed, but I do feel really different about my daily life. One of the things that I have noticed is that I am now eating more. Food has suddenly become something I am actually interested in again. To the point, that last week, Adam and I actually had a meal together, something that we haven’t done for years, others than on special occasions. It doesn’t take a genius to work that one out. With my body no longer blocked up all the time, I actually have somewhere I can put food, rather than it just causing me more and more pain with every mouthful. I hadn’t really made the connection at first, then this weekend, I suddenly found that the food I was preparing, I wasn’t so keen again to eat. Then this morning, I woke again to the feeling I know all too well, there was the pressure right across the top of my abdomen and the pain was building. As I said the connection is clear.

On the whole, I have to say that I am now glad that I asked for help. Sometimes it may take a lot for us to reach out, and I guess what I have learned is that maybe, just maybe we should do so far sooner, rather than putting on the act of “I can deal with anything”, when the truth is, we can’t. It’s all well and good being strong and wanting to hold on tightly to our dignity and our independence, but when the time comes that you know in your heart you need help, you just have to ask, as it is there and they’re not all monsters and demons.

Please read my blog from 2 years ago today – 25/07/2014 – The learning path

My entire body seems to be on fire today, something has triggered a mass eruption of nerve signals. I noticed it within a few minutes of waking up, I had gone through my normal half awake wonder around, going to the loo, fetching a glass of coke and lighting my first cigarette of the day, when bang, the upper third…..

More than “Me”

Posted on July 13, 2016 by livinginalimitedword

It’s one of those days, a day when I know I have things to do and things that need doing, but all I want to do is go to sleep. Keeping my eyes open is hard and if it weren’t for the fact, I’ve felt like this a so many times before, I might be sitting here wondering why, but I’m not. I know that fatigue is very much part of my life, but yesterday, just like a couple of times last week, I had more than one visitor in the same day. I have known for as long as I have been housebound, that having people here exhausts me, but when I land up with a series of visitors, it totally drains me. At 9 am, the incontinence nurse was here to measure the amount of urine left in my bladder following going to the loo. For the second time, it was borderline, just below 100mls the level where it starts to become dangerous if not cleared. Which means she wants to come again next week, for a third reading. At 11 am the district nurse arrived. She was here for about half an hour and we have agreed going forwards, to have just two visits a week, to see if we can get my bowels into a routine. They will be here every Monday and Thursday, as, without a doubt, three times a week is far too much. My body is simply not responding to the more aggressive path we have been trying.

If all that wasn’t enough, the podiatrist showed up just after 2 pm, but she at least was far happier with my feet than she has been in the past. Since I have been having the carers in to shower me, they have also after the shower, been putting cream onto my feet to stop the skin build up I had in the past. She now wants me to ask them to once a week file my nails gently, to help stop them from getting as long as they have been between her visits. I forgot to mention, that of course, Adam came home for lunch, so my entire day was filled with people coming and going, it is really no surprise that today, I find myself floored. For the majority of people out there, all that would have been nothing. For me, it was like being in the middle of a shopping mall and every single person wanting to speak to me. I have lived so long seeing not one other person than Adam, that it felt like bedlam. I have to admit that I feel better about the next few weeks, now that the district nurses are only coming twice a week. Somehow, just having people here on four separate days out of seven, feels far less invasive. I don’t know why one day less makes such a huge difference, but it really does.

There is one other thing happening today that also always makes me sleepy, it’s a really odd one as well, and I think it has more to do with wanting to run away and hide than actually going to sleep. I am having problems with faeces incontinence. It hadn’t happened for a really long time until last week, then suddenly following my enema on last Friday, it returned. I spent the whole of Saturday, going to the loo and finding yet again, I needed to clean myself, today is exactly the same, but the quantities are larger. Having to keep going back and forward to the loo, just in case it’s happened again, isn’t making any of this any easier. I have been living with incontinence, on the small scale, on and off for the last few years. Suddenly, wetting the bed a couple of weeks ago was tough. There is a huge difference between wetting yourself slightly because you stand up, and wetting yourself when you’re asleep and not waking. The follow-on events, which there have been two of, well they have been so much easier, simply because I can clear it up and dispose of the evidence myself. Yes, I can clean myself up when I mess myself, but the fact I don’t feel it happening, well that worries me. How long will it be before it’s not just a small amount and I lose control totally? Even as it is right now, it’s just one more thing, I can do without. I never thought that I would say this, but I am so glad that I am wearing this nappy, that way, if it escapes my buttocks, it won’t go very far.

It is really beginning to feel as though I’m not allowed to have what anyone would call normality. Right now, I would just love to ask Adam to call all the people who are coming in to help me, and tell them not to come back. I know that would be a stupid thing to do, but I desperately want some peace and quiet, and I don’t see it ever happening again. It’s not as though I can ever ask for a holiday, as holiday or not, we all need to shower and go to the loo. This is my life, not just for a couple of weeks, but forever and I’m only now really beginning to understand what the true impact of that is. I have been so locked up in the emotional side that the reality, well it had somehow slipped past me, I was too busy feeling sorry for myself.

I have never really seen me as a “me, me” sort of person, but that is exactly what I have been lately. I haven’t been able to see past that emotional “Me” and to see the bigger picture. The practicalities of my life are never going to be the same again and nor are they ever going to the same again for Adam. Every tiny thing in my life now affects him. His home and his life are now invaded by people four times a week, because of me. OK, on three of those, he is at work, but he still knows that there are people here. Knowing Adam, he will be worried as well that I am dealing with it all with ease, and I haven’t thought about his needs in any of this or his feeling. It might all be happening to me, but it’s happening to him as well. It is easy to say that all of this is out of our control in many ways, but just because it’s the way life is, doesn’t mean that we have to like it, or be happy about all of it. Somehow, I have to find a way of making all of this easier on him, as well as on myself. This is going to take some thought and I guess some time as well.

Please read my blog from 2 years ago today – 13/07/2014 – What was that?

I lay down last night with nothing in my head other than to simply go to sleep, I was so tired and the muscles in my limbs had been screaming at me all evening, sometimes I am actually grateful that I no longer have taut stomach muscles, as it is only the muscles I put to constant use that ever ache like that. It always takes me a couple of minutes to relax and let my body settle on the mattress, even……

It’s still there

Posted on June 23, 2016 by livinginalimitedword

It seems that with every day that passes, things are changing in my life. It’s not just the physical changes, the things that are clear to anyone reading my blog, but it’s also the psychological and emotional effects of all that is happening. I am having to adjust at breakneck speed, as each thing that happens, just hasn’t allowed me to assess and work my way through it, before the next issue, screams it’s way into my life. It has got to the point where I don’t even feel that I am even reacting to anything for at least 24 hours. I appear to just accept on the surface but then, bang out of nowhere, the next day I crumple inside and truth of it hits me. If there wasn’t enough going on, I have invited another to join all the mess that is now me.

It struck me over the weekend, just how ridiculous this thing I have about Adam seeing me naked, really is. Yes, I can and have, given many reasons over the years I have been writing, but none of them make it right. From the fact that I can’t stand the sight of my own body, right through to the biggest fact, he hasn’t seen me naked for at least the past 12 years, possibly longer. Like many marriages faced with all the issues that conditions like MS causes, sex became something that simply stopped and has never started again. At the start, it was because of our joint fear of the pain that it caused and was compounded when my libido totally vanished. Naked wasn’t required, something that as my weight rose once I because housebound, I was grateful for. When it became clear that I wasn’t coping with things like having a shower, I chose to have a carer, rather than Adam seeing my decrepit body. After only three showers, the fact that I don’t have a problem being naked with a complete stranger, it started to wonder around in my head, just how wrong the whole situation was.

I have put myself through total hell recently about the whole thing and just when I was coming to terms with it, those tumbling thoughts, started to ask, “Then why not Adam?”. I was totally shocked the other evening when a similar collection of words, tumbled out of my mouth. I knew Adam had accepted the situation, but I also knew that it hurt him, and hurting him, isn’t something I like doing. I had started the conversation, and I also knew that I really meant what I said. I want to get past this, to be able to feel comfortable naked in front of him. There are so many reasons for wanting things to change, but what had brought it home to me, was the other night when I wet the bed. It had shown me that there are a lot of situations ahead of us, where I might be forced into that situation, and I honestly fear reacting badly, or not being able to cope with it. I don’t need anyone to tell me that it’s stupid, I fully understand that, but when it comes down to emotional reactions, you don’t need me to explain how unpredictable they are. Add in the damage that has been done to my brain already, and as time passes will be done again, well, we really have to somehow get past it now, while I can still be rational about it all.

How we go about it is the biggest question that neither of us fully answered. Adam suggested that I continue with things as is, but the next time that dye my hair, that then, he should wash the dye out for me in the shower. I dyed my hair last week, so we are looking at maybe 6 or 8 weeks time. I think his idea is that gives me time to think and time to get used to the idea. I agreed, but I fear that it is still a case of nothing to everything in one quick act, and it could make things even worse, and hurting Adam even more. I have so much running around in my head just now, and I just feel as though what I have done, is to give myself yet another one.

I spent the afternoon yesterday, sorting out some of it anyway. I have found with ease some pads for the bed, that apparently, will hold up to 3 liters of liquid without leakage, plus they are washable. So I have bought two to start with, I hope that I won’t need more than that, but they are on the way. I also bought some underpants or knickers depending on where you live. I haven’t worn any for most of my adult life and when I did, it was just a g-string. Until a few weeks ago, the leakage that I had, was very limited and of the nature of few drips, rather than enough to wet my clothes. I have been using pads whenever I have been going through bad phases of it, without proper knickers which yes, is possible but often uncomfortable. In the last two weeks, I haven’t been without them, but I couldn’t go on like this forever, so I decided it was time to join the rest of the world and wear them. It is all beginning to add up financially and all because I’m not well. I’m hopeful that what I have bought, will see me through until I see the continence team.

When I spoke to my doctor the other day, I discussed what had been said to me when I was at the hospital. He hasn’t received the letter as yet, but he put my Morphine slow release tablets up from 70mg to 90mg twice per day. I am only on my second day of them, but they are really making a difference, the discomfort that I have lived with for the past three years, has been reduced to a more background level, rather than driving me nuts continually. It has also reduced the pain levels throughout. The feared fog or grogginess just isn’t there. If anything, I would say that I am that bit brighter, which if you think about it, makes perfect sense. So at least today, I can end my post on a positive note, something I fear has been missing in the last couple of weeks, as I have often said, the good is there when you look for it.

Please read my blog from 2 years ago today – 23/06/2014 – Not an answer, but it helps

My body feels like a wound up spring that want to explode but can’t. It took me nearly 3 hours to sort out the overnight tweets, nothing odd there but I was finding it harder and harder as every minute passed to use three keys on my keyboard, Ctrl C to copy the name, Ctrl V to post them onto my spreadsheet. Each time I did it I felt as though all I wanted to do was scream loudly, not out…..

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…..