Banished demons

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…..

The price of help

It was Friday morning that the Social Services rep came to see us. I don’t remember her name, not because of anything bad about her, quite the opposite, she was an extremely nice person and wonderfully understanding of our position. I had thought that it was going to be another PIP type interview, and although there were similarities, it felt nothing like it. She wanted to see, not just talk about how I was dealing with my life. To watch me transit from my chair and the all the places where I had to, not just make her own pictures in her mind. We went from room to room, and I we talked about what worked and what didn’t for me. Not just because of how things are arranged as an OT does, but what the problems I encounter in every way. We landed up having a discussion about incontinence in the bedroom, weight in the bathroom and almost everything else in the kitchen. Somehow, that was the room where we landed up chatting about everything from food to meds, my issues with strangers and inability to deal with things like the mail. It was while we were there, that my Doctor called me back and the decision that Steriods were what was needed, to see if we can fight off whatever is happening to my arms. Which by there the way, there is a little improvement, apart from my legs decided to join in yesterday, but I have after all only taken three doses so far. Adam fetched them in the early afternoon for me, but I decided as they can cause issues with sleep, to leave them until the next morning. I am so glad that I started writing my posts a day in advance, as it allows me to handle my new stilted typing style, and the even stronger than usual case of dyslexia, that is centered in my fingers.

My body was a mess on Friday, it is almost as though, it for once was actually ready to perform to a stranger and to show them what life is really like. When we eventually made it back to the living room, it was then that we talked about what help I need and how to go about it. It was also then that we were told about what it would cost and how the two different systems work. The straightforward one is an assessment of our incomes, which would once they have decided what we can afford would shape the amount we would pay. If I have just one visit a week, the charge would be £25 at the full rate. I panicked when I heard that as I immediately, as I thought that that would be the charge for each and every call they made. Not so, they do understand that people couldn’t possibly pay out several hundred pounds a week or day, depending on how much help they need. There is apparently a cap. and once that is reached, the rest is free. My case worker would be the women who was here on Friday, and she would allocate the person coming out to me.

I need at that point to tell her about my fear of how such visits might go, due to a nurse who was coming to see me a couple of years ago. She was here, because of the problems I have with my bowels. They wanted to try giving me suppositories every second day, something I couldn’t do, because of my dexterity and the angles that my arm had to reach in. On three occasions, she left me crying on my bed. She hadn’t done anything wrong, but I couldn’t deal with someone sweeping into my home, shoving something up my backside and without even a goodbye, leaving me lying on my side, a position I have issues with as I can’t roll with ease, and then letting herself out. I just found the whole thing distressing, despite the fact I totally understood why she was rushing and I didn’t expect her to stop for a chat, but I did think she could have been friendly enough to make sure I was at least comfortable and at ease. I was reassured that nothing like that would ever happen. They too wouldn’t have the time to stop and chat, but they would never leave me if I was upset. If there was any sign of my not being my normal self, they would stay as long as possible, and phone the office with their concerns, whereupon Adam would be called.

They couldn’t guarantee that I would see the same people every day, but they would try to as much as possible, as we had made them aware of my difficulties with strangers. Different tasks are allocated a time slot, not just in the day, but in the length of time, they have for performing whatever they are here for. If it should prove to not be long enough, the time slot would be extended. It would clearly at first be a case of working things out to suit, but I was also told they wouldn’t really be able to sit and have a long chat, as they have tight routers to work through every day.

The other system, which will require another visit from someone else in about 6 weeks, who will go through all that we did on Friday again, then a claim would be placed from which we would be allocated a budget. It would then be up to us, to choose which company we would prefer to supply the care that I want, clearly their budget would always need topping up by us. It would mean that once we have the company we prefer, we would hopefully have more say about who was here and the amount of time, I needed them for, but again, that would depend on cost as well. She couldn’t tell me a great deal more about it, just that outline.

Even though we are unsure of the cost, we are starting with the first system this week. I am to have two visits each week, starting this Wednesday and the following Sunday. I have asked for help with showering, as it is the one thing that I am really struggling with and I’m not comfortable asking Adam to help with parts of it, plus of course, Adam is at work during the week. I don’t think I could handle having a more than two showers, but I honestly, would like to have more than one, especially during the summer.

It is amazingly difficult and tremendously emotionally exhausting to admit that you need help with something so personal. I think that I cried from half way through the time we were in the kitchen, right up until almost the time she left. There is little that I can put into words about how that feels. It is a bit like saying I have jumped over that line from still able in some ways, and on to what I know is a slope that can only ever go in one direction. I am going to let a total stranger into my home and have them help me with something that is about as intermit as it gets. Oddly, the hardest bit without a doubt is that mental leap, like stepping backward into childhood. It’s hard, so damned hard to do. I just want to scream, “How have landed up here?” not one, nor just loud enough for someone in my home to here. I want to scream it thousands of times and keep screaming, until every single person in this world, manages to give me a reasonable answer. Life shouldn’t be like this. My life shouldn’t be like this, and it doesn’t matter how much I know it’s just the way it is, or who dares to tell me that, I still don’t want to accept it, I just know that I have to.


Please read my blog from 2 years ago today – 06/06/2014 – A simple lesson

I am totally behind with everything this week, nothing to do with my health and everything to do with the TV! For a history lover and one who also is still learning about WW2, there is so much to watch at the minute, how am I supposed to choose between two things I totally love, reality and the past. I know even Adam can’t understand why I watch so many programs which seem to be about the same thing, well it’s…..

One week on: The visit

The MS nurse hadn’t been here 5 minutes when he said just how much he could see the change in me. He is the second medic in under two weeks, to have said out loud that my health is visibly failing. I along with half the world refer to nearly all the conditions that I suffer with as invisible, clearly they are not. I had made a point of heading to my bed early yesterday afternoon as he was due here at 3 pm, a time that would normally find me in bed, I at least wanted to be sat up in the living room not lying in bed when the doorbell rang. Adam had taken the day off, so by the time it did, I was sat on the settee, with my chair parked within reach, just as it has been for the past week. Despite the fact that the whole purpose of Adam being here was to get to meet him and to listen to all that was said, he had hung around in the kitchen for a few minutes after he arrived, before joining us. Our discussion centered around the chair and why I had decided to use it to begin with then moved onto all the other aspects of how things had been in the past year. It is actually 14 months since he was last here, but clearly he was shocked by the change in me, as he returned to it several times.

So far, Adam and I between us have managed ever aspect of my care, but neither of us, especially me, know that the time that outside help is getting closer. The system in the UK at the present means that we will have to bring into our lives some people that I have a great revulsion towards, social workers. My feelings run deep as they have failed my family and me repeatedly over the years. Firstly when I was a child and I was removed from my Father’s care, firstly at his bidding, until they discovered that his claims of a teenager out of control weren’t the truth. The day that he called them in, I bore bruising, a broken nose and four fingers that had to be pulled back into joint when they took me to the hospital. He wanted me out of there, they didn’t want to leave me for a second longer in his care. So why my hostility, well after just over a year of living with a lovely Dutch couple, I had to move on as they didn’t feel they could cope with a teenager and a new baby. Looking back, I can fully understand that, but I was placed just aged 14 in the YWCA, with little support and no one to turn to. I felt abandoned with no one and nothing. The second, well if you want to understand that, I suggest you read this post, “Christopher”. Bringing in the very department that has failed me so totally in the past, does anything but fill me with joy.

Social workers are the only people who can firstly assess and secondly supply us with access to the funding to pay for the care that we consider is needed. They don’t fully cover the costs, we would also be means tested so they could access just how much we would have to pay towards it ourselves. Once assessed it is up to us how we spend that money. We can give the budget back to them so that they can simply supply us with carers to cover my needs, or we can sort all that out for ourselves, with the budget paid into my bank account. Something that right now, I quite honestly don’t know which would be our choice. I was perfectly honest and said at the moment, I don’t think that any outside help is needed, but I am also aware that that time is getting closer and I am open to the fact, if not the whole process, quite yet. He suggested that it might be a good idea to get the ball rolling, rather than wait for a crisis, which I agree with, but as I said, I know it is coming, but I also know that it is still months away, not just weeks. I believe that I will know myself when I am reaching that point, just as I knew that I had to make the move to my wheelchair from my feet. I am under no illusion that it will take several weeks to organize, rather than just a couple.

I hadn’t realised until the three of us were talking about all of it, that Adam had it in his head that he was going to be more or less forced by the state to give up work to care for me. Not once had he even voiced that idea and I don’t even know where he got it from. I was really glad though that he did so when there was someone else, other than just me, sitting there to tell him to get that idea out of his head. I honestly didn’t realise that he was picturing our future as him being my sole carer 24/7. My confusion was even more so as we saw the system in action when my friend Jake was caring for his father. Jake was at home full time, but that was due to him having a breakdown following the death of him Mother and the discovery that he was adopted. We had actually even been in his house when the carers arrived to put his dad to bed. So he had seen that outside care was there to help with anything that was required. The only difference was that Jakes dad got the care for free as he was over 65, an age that despite feeling it at times, I clearly haven’t reached. I just wish that he had discussed this with me rather than wondering around worrying about it. It must have been like some kind of monster hanging over him. I tried to ask where he got that idea, but he brushed it aside with his usual answer, that he didn’t know and as he is my husband, he just thought that was the way it would be. If nothing else came out of yesterday, I am at least glad that he is no longer thinking his future is to be tied to my side, alone.

As I had expected the nurse wanted to know just how my mood was. I knew it would come up, just as it has every time before, but with the move to my chair I was sure it would be discussed in more detail. It was at that point that I handed over partially to Adam, as I felt that if it came from him rather than me, then it would be clear I wasn’t covering anything. I can understand just how it has become an area that health professionals feel is an inevitable outcome of having a chronic illness, especially with my being housebound as well. As it always has, it turned into a conversation on the virtues of being online and blogging. With Adam being here, it actually was the first time though that I had the opportunity to sing one other value of blogging, the positive impact when it comes to marriage. I know that Adam, like many other husbands, worries about my health. My blog though has freed up our lives to just be like any other couple. Without it, Adam would be coming home from work wanting to ask so many questions, and I, like anyone else, wouldn’t be telling him everything. His constant questions would drive me nuts and my silence on the details wouldn’t be because I was hiding anything, it’s just that I wouldn’t think something to be worth mentioning. Here is the perfect solution. My health doesn’t dominate that precious time that all couples spend together. I write, he reads, simple, and we’re free to just live.

Finally, we had a detailed conversation about my wheelchair. I had to be direct about it, as although I had already told him how difficult I was finding using it in the house, he had swiftly moved the conversation onto other things. So I asked him directly about getting an electric chair and from Westmark, which is the department in Glasgow who deal with them. He didn’t realise that my chair was supplied by them as he thought it was far superior to their usual ones and that we must have bought it. I knew it was special, I had been given it in the first place as I didn’t have great strength in my arms so it was a special lightweight one, not the bog standard one. We went over the problems that I was having, how my arms were finding it often almost impossible and my hands were now almost constantly in pain. I also told him something I hadn’t mentioned to Adam, it is also causing problems with my COPD, I am getting breathless with it. Not to mention the problems I have with bruises and bleeding knuckles. All those details that I have been adding to my list of problems, everything that I felt were the reasons why an electric chair would change my life. This was the moment my first week in my chair had been leading to. He isn’t that hopeful that they will give me anything better. He said that in his experience, if you can move the manual chair at all, no matter how much pain, or how difficult it is, you won’t normally get an electric chair. He even thought that moving house would be an easier option, one which I explained wasn’t a possibility that we even had. Once again I told him what happened with the housing authorities that supply housing for the disabled. Because we own our own home, we aren’t entitled to any help, yes we can be on their lists, but we will never, make it on the points system to a level, where we would be offered a home. He wasn’t sure if he could do it, but he is going to find out about referring me back to Westmark, and what the possibilities are.

What happens now, who know. At least Adam has met and made contact with the person who is our information person, so he can turn to them when needed, if I can’t. I feel as I always do after one of these meetings, it has cost the NHS money, but it is the first and I am not joking, the first one that has had a point to it. Normally, it is just ticking boxes and I’m not sure what other purposes it has. Just as last time, he said that I knew more about MS and the system than even he did, a statement that says everything about the system I have learned to live within.

Please read my blog from 2 years ago today – 23/09/2015 – Exploring is no longer possible

It is strange how two days right next door to each other can actually be so different, yesterday passed without not once wanting to head off into the kitchen to grab yet another dose of Morphine. I wasn’t without pain, that really would have been asking too much but life was just as it normally is, pain but pain at a level where…..