The day has arrived

We, at last, have a shower that works!!! I haven’t quite made my way into it yet, as that would push me out of routine, and even though I am desperate to feel clean, I know that would make the rest of my day hellish. Having a shower is so exhausting, no matter how I feel now, I know I will feel worse after. For a healthy person, a shower is just part of everyday life. To me, having a shower is something that has to be planned, worked out fully in advance and done at the right point in the day. That’s the hardest part, I have to be sure I have enough energy to do those oh so simple things, like holding my arms above my head, long enough, to wash my hair. Enough internal energy to deal with the heat that drains me at a rate that I quite honestly can’t explain, as until you have felt it happening, you can’t imagine it. For me, the best time is around 3 pm. By that point in the day, I have done almost everything that is to me essential. It is a point in the day, that if it all goes wrong, which it can do without warning, well I can just sit on the settee for the rest of the day, or even, go to bed for a rest.

When you break down all the elements from simply being sure I have all the towels, gels, shampoos required, then getting undressed and going to the loo, before entering the shower, that on its own, is more running around than I normally do, before going to bed. Washing is a painful process. Put together the physical actions, the reaching, the bending, the pain that those needles of water can create as they hit my skin, in just ten minutes, I want to do nothing other than escape, but I can’t. Not until I am clean, my legs are shaved and my hair is both clean and conditioned. Showers used to be five-minute wonders, not now. Now I am stuck sat there trying to recover before I am forced back into action. I don’t think I can be out of that shower in under 20 minutes. When I do appear early, well, the work is only half done. Have you ever felt as though your very breath is being dragged out of you? The heat and steam formed by the shower does just that, so yes, I have occasionally, just given up.

I have thought many times about accepting Adams offers of joining me in the shower to help me get washed. On the surface, it sounds like an answer, but it isn’t, at least not yet. I have worked so hard since my body fell apart, to keep myself covered so that he can’t see, what weight gain and muscle wastage has done to me. I know that he says that how I look, isn’t what’s important, but I can’t even bear seeing myself in the mirror, far less letting him see me. So to me, there is no other way of showering, other than alone.

When I do come out of the shower, the work hasn’t ended as I still somehow have to get dry, apply creams and all things we women do, just to make ourselves look as good as possible, more importantly, feel as good as possible. That’s what showering really used to be about. Few of us really need to shower daily, it’s not as though we all do manual labour and are bathed in sweat throughout the day. Showering and washing our hair daily, is about feeling good. I physically can’t take all that daily. It would destroy me so badly, I wouldn’t be able to do anything else. Even though I only shower weekly now, the whole pleasure of any individual part of it has long since gone. Showering is my weekly nightmare and that is no exaggeration.

Even now, when I haven’t had a shower for 12 days, and my hair is beyond disgusting, I am still not looking forwards to it. A couple of days ago, I thought that I would be diving in there the second the plumber was gone. Now the time has arrived, I am once more as I am every week, sitting here dreading all of it. These days, Adam does all the running around for me. He makes sure that as soon as I am undressed, everything is there where I can reach it and need it to be. He will have checked that the suction cap grab rails in the shower cabinet are secure and everything is safe. He will be there to tidy up after me, dry my feet and apply cream to them, he even helps me dress. All I have to do is wash. ALL, who am I trying to kid? Nothing in my life is just “ALL”. Have you ever had a cap full of needles battering their way into your skull? No, well that’s what I have to go through, just to wash my hair, as I said, nothing is just “ALL”.

I will sit here. I will extend everything that I can, in the secret hope that it will be too late in the day. It’s a game I play with myself every time. I push it until the last second, then Adams shuffling and chatter will tell me that I’m not getting away with it, I have to move and just get it over and done with. I just wish that someone would invent something that would take all of this away. I don’t know what? Just something, anything that would change my weekly nightmare into at least just something I’m not keen on, but I don’t know what.


Please read my blog from 2 years ago today – 30/04/2014 – Questions

Sometimes in life all we ever want are the answers, I often find when I feel like that that the best thing to do is not look for the answer, but to look for a new question. I suppose the best example of that is the oldest one I know, don’t “Ask why me? Ask why not me?”, the first is impossible to answer, but the second is the answer. Like everyone when I was first diagnosed, I asked myself the first question a million times and I actually found a million different answers, I could find more reasons than I wanted to admit as to why it should be me, I was pulling myself to bits because there wasn’t a real answer other than I was being punished. The three years before my diagnosis had been probably the happiest of my life, I had for the first time found someone……

Here’s to tomorrow

I’m cold, the internet is once again causing me huge issues and I desperately want a shower, and as I can do nothing about any of them, it’s not the best start to the day. Waking up to a bedroom that was so cold, I didn’t want to get out from under the covers, isn’t really what I would expect at the end of April. At first, I was telling myself that it was just me, but the thermometer confirmed that the weathermen had been right with their forecast, a touch of winter has returned. In this house, it’s a huge touch, even when they get it right, they still somehow manage to lie. Yesterday, my internet service was rock steady, today, it has already been down for nearly an hour. I am really now at a lose, other than ripping out all the wiring and buying a new router, I don’t have the slightest idea left, as to how to fix it. And as for the shower, the new one is due to arrive today, followed by the plumber tomorrow, so we’re getting closer, but I lucked out there as well. None of which helps me at all, at this very second. I guess it just shows that all of us, healthy or ill, are always susceptible to outside forces, that we have no control over. I might be feeling crappy because of my health, but there is just as much a chance, that all of the above, is just pulling me down in a perfectly human way, something, that is actually very easy to forget.

Being ill, I know for one that I often forget all of that. It is always easier just to say that it’s the fault of my PRMS, or that maybe I’m just not quite getting enough oxygen. I feel rotten and I have a resident reason to do so, so why look any further? Why even allow for the possibility that it is something else altogether? No, it’s just easier to blame my health. Let’s face it, if you hadn’t had a shower for over a week, how would you feel? Yes, I’ve kept myself freshened up, and an extra layer of deodorant works wonders, but now that my hair is starting to stick to your head, well it’s not the best. Adam has offered to help me, but trying to lean over the sink, while he pours water over my head, just isn’t going to work. My body won’t bend that way, and the pain that it would cause me, well I’d rather my hair went dirty for another day. Logic, is one thing, reality, is a totally different. This is where being housebound really stinks and in more than one way. Anyone else would be able to deal with this situation with ease. Even if you didn’t know someone to ask, if you can use their shower, well there is always a swimming pool or a spa, you could visit, somewhere to go to get clean. I’m stuck, I can’t go anywhere.

The first thing I did when I got up this morning, was to light the fire. I couldn’t shut the living room door to keep the heat in, as I was waiting for the delivery of the shower. I knew that without a doubt, if I did, the buzzer would go and I either wouldn’t hear it, or I’d take so long to negotiate the obstacle course in my wheelchair, they would be gone, by the time I reached it. I so wish that the intercom was here by my desk, but it’s not, so I had to let the precious heat from the fire filter it’s way around the house. Is the picture starting to form, add in now the fact that my computer is frustrating the hell out of me, and life is just peachy.
I feel rotten, take your pick which is it, life or my health? At a guess it a good mix of both, but it’s taken this extreme example of my life, for me to start questioning more deeply, just what might be making some days harder than others. As I said, it’s always easiest to blame the obvious, the condition that is causing us pain, that we’ve lived with for years. Sometimes, we just have to accept, that like everyone else on this planet, life gets us down too. Those days when our tablets just don’t seem to be working as well as normal. Those days when we’re tired, when we don’t have the energy that we need, might just be being made harder because something else in our life is wrong. Just because we are ill, doesn’t mean we suddenly have become immune to reality. If someone in perfect health, was sitting here instead of me, totally unable to change a single thing I have written, I’d put money on the fact that they too, wouldn’t be feeling exactly at their best. The problem with reality is, just like catching a bug, if your already weak, it’s going to hit you even harder.
This last week would have tested most people. Yet, I am still expecting myself to be superwoman, despite the fact that I haven’t even been equal to her little finger for nearly a decade. Why is it, that that is so hard to accept? I suspect that I am no different from anyone else in my position, somewhere inside the mess that life has turned me into, I still can’t fully accept, that I’m no longer the me, that I once knew. Yes, I’ve accepted my condition, but that’s totally different from accepting that the core me, has had to change as well, and that’s really hard to do. Unlike someone who is facing old age and says that inside they’re still 20, accepting that your entire life has been changed by illness, so much so that the simple everyday pressures of life, are enough to actually make us feel worse, is a real biggy to get our heads around.


Please read my blog from 2 years ago today – 29/04/2014 – Breaking the monster

There is something very odd about reading your own words back, especially when they were written a couple of years ago, it is like looking at yourself through someone else’s eyes as you had totally forgotten every word of it, but it is still familiar. I don’t read all the posts linked at the bottom of each page, just glance through them normally, but reading how I described things that were relevant to me at the time, is enlightening. I realise just how we all change, even over such a short period of time as two years and even when you are in your 50’s, when you would expect the changes to have either stopped or slowed down at the very least. I know that every bit of information we add to our knowledge daily has to change us in some way, that is just logical, but the fact……

Life without legs

I have felt my lungs closing in on me in the last few days. To be honest, I can’t remember when I was first aware of it. It was just there, but it didn’t feel new if that makes any sense. There was a tightness across my back, nothing new there, but to go with it, I had the feeling that my right lung was solid. I don’t mean like concrete, but solid as in not giving, not flexible. I’ve felt it a few times at the end of a hard day, but this has been with me constantly now for several days. At first, I thought it was just the stress of the meeting building up on me, but as I said yesterday, that pressure has lifted dramatically. I am still a touch no the tired side, but that is to be expected, but this thing with my lungs, well it hasn’t changed at all, it’s just there as it has been for several days. I have tried both my inhalers and my nebulizer but nothing seems to touch it. It is as though it has decided to become a fixture in my life. I know it’s early days, but it just has that feeling, like it has come to stay. I don’t seem either to be able to get anything like a stable reading on my blood oxygen. They have been all over the place, from highs of 94%, with sudden and dramatic dips as low as 86%, when I least expect them. The worst ones always seem to be when I have returned from a trip in my wheelchair, which I thought would have been the time, they should have been at their best. Just as exercise raises you heart rate, I thought it would force more oxygen into my blood, not less? Mind you, I have given up on my body doing what it should in all other respects, why not in this one as well.

It isn’t just my lungs that are playing up, my legs seem to be getting worse by the day. Yesterday morning I stood up to go to my wheelchair to fetch something to drink, when both legs from above my knee upwards, just started to shack violently. My knees wouldn’t lock and I was sort of stuck in a half seated position, not able to stand and not sure how to sit down again. For once, though, my arms did come to my rescue. They locked perfectly and I was able to lean on them, while my body decided, just what it was going to do. I hit the seat heavily and actually quite painfully, as often is the case when things like this happen, it was my backside that took the true injury. I may not like the fact that I have gained weight, but sometimes, that extra layer of blubber is actually quite welcome. A few minutes later I did make it to my chair and right through to the bathroom without issue, but once there, I was so glad that we had the grab rails installed, as, without them, I wouldn’t have made it to the loo, at least not without a visit to the floor first. It almost feels as though my legs have noted that there is now little opportunity to achieve collapse, since the bars arrived, as without a doubt, since that day, they have become weaker and shakier than they were before.

This isn’t the first time that I have had that feeling. That my body has been hanging on as long as it could until the new gadget or aid arrives, then bang, it has permission to stop even trying. I am sure that a shrink would probably agree, but say that it has nothing to do with the state of my body, but everything to do with the state of my brain. I like to think that I’m that little bit above such a thing, but I’m probably not. Either way, I can track with total ease the decline of my ability to stand or walk, from the day I sat in my wheelchair for the first time, 5 months ago, to this date. Clearly I took the chair out of the cupboard as there were clear signs that I needed it, but since I started to use it, all of that has speeded up. The grab rails arrival seems to be hosting, the same sort of sudden change. Where ever I am, that final act of truly standing is getting more and more difficult. Almost as though, each time I sit or lie down, they degrade, so when I next need to stand, at first I can’t. I am finding myself instinctively adopting a wider stance, one that I think my body is demanding in the hope that it will provide more stability. I have even found myself not quite straightening my hips, I think that it’s because I fear falling, and that way, I am closer to the seat I just stood from.

It amazes me how the combination of our minds and our bodies changes over time, and how they both seem to do things without asking us. A year ago, I was still capable of standing upright and walking, now, I am either in my wheelchair or shuffling like a little old lady, permanently reaching for the next thing I can hold onto. I have gone from confident to fearing the whole process, even when I’m not truly aware of the fear. Five months, that’s all it has taken. How will I be in another five months? What is the next change, the next process that I’m just waiting to discover, I can no longer do?


Please read my blog from 2 years ago today – 28/04/2014 – Adjusting

Every day I tell myself this is it, I have done it, at last, I have found the way to get through the things I have to do each morning faster, every day I find myself here just at about the same time as I do every other day. Just like every other day, I am beating myself up about it. Why is it that no matter what happens in life we are always the ones hardest on ourselves, we are the ones who actually make our own lives tougher than they should be, just because we have stupid expectations of our own ability. Even now although I haven’t worked for years, there are nights when I dream that I am still in the office and that I am trying as I always did to keep all the plates spinning, despite no one expected me to do half of that which I did daily. I have even woken in……

Drop the game

I couldn’t believe how tired I found myself yesterday afternoon. I know I still have to wait for the letter to be sure, but I felt like I had had a weight lifted off me, but at the same time, someone had pulled the plug marked energy. I found myself sitting here in the late afternoon, staring at the computer screen and not understanding how I couldn’t solve a simple Sudoku, and I do mean simple. My brain was befuddled by everything that had happened that morning, but what was getting to me the most was the fact that the woman who was here in the morning, quite clearly didn’t agree with the system any more than we did. She told us that so many people find the whole system wrong, especially for the reason I did, the feeling that we have to prove we are ill, even when we’ve been diagnosed by our doctors. The most telling thing, though, was her words, the way she said things, hedged so that she didn’t say anything that might lose her, her job, but still saying clearly that she saw the way they had switched systems as unfair. She clearly had to tow the line, like many of us have had to do, because we need a job. I equally got the feeling from her, that just as I would have done in her position, she was still going to do her job to the full.

I was lucky, I only had one job where I landed up feeling that way, that I would rather be doing anything, but what I was, as morally, I couldn’t deal with it any longer. I was selling what was called below the line advertising. In simple terms, I sold advertising space in publications where part of the cost of the ad, was given to charity. I eventually worked out that the charity got less than 5%, and although they would have got nothing otherwise, I just couldn’t settle the dilemma in my mind. The problem is, we all have to live, we all have bills to pay and if we don’t work, what then. Not all of us have the luxury of doing a job that we love in every way, but regardless of that, many of us still manage to separate our emotions and remain professional. Humans are amazing, I can’t help but wonder what the world would be like, if, we all stopped acting, and I don’t just mean at work. I have admitted freely that I have, and still do, use bravado in huge amounts to get me through the tough points. The people we deal with daily are just the same, could you imagine what it would be like to walk into a large store, where everyone was totally honest about how they felt at that moment, and where expressing and talking that way freely. Instead, we all wonder around lying to each other, pretending that everything in life is perfect. Sorry, I know that’s a bit off the wall, but yesterday made me notice it so strongly. Here we were, a woman who clearly isn’t at peace with the job she does but is a professional, myself, with bravado flowing like water, but failing as I went into frequent stuttering messes, and Adam equally stressed, but desperately trying to make general chit chat to ease the process along. Although every word that was said, was honest and appropriate, not one of us was actually being ourselves.

Without a doubt, it is something that I have seen in bucket loads since my diagnosis. I doubt there is one of us who feels that some of our doctors aren’t giving us anything, other than a practised routine. One they have honed over the year, for when it comes to dealing with the bad news. If you like, their trained bedside manner but usually without the bed. After receiving little other than bad news, I would go as far as to say, that I know now before they say anything, just what is coming. You learn to read their body language, as it is far more reliable than their words often are. Without a doubt, they have to learn to, as if they allowed themselves to be emotional, they wouldn’t last a week, far less a whole career. Some take it too far, though, as I have met a few, who I can say are nothing other than cold fish. Their separation from their emotions is so severe, that they come across even in their body language, as not caring, just doing the job and nothing else. They just sit there speaking as though they are reading a telephone directory, not a human being talking to another human, telling them that they have yet another condition, that is going to make their life harder.

When I look back to the days when I was being misdiagnosed, I can remember clearly how it felt to be sat there, being told politely that I was either nuts or a liar. The human factor always seemed to be missing, the whole idea that I was actually a person who was ill, was treated abdominally. So OK, they couldn’t confirm what I was saying as a condition they understood, but being dismissed, being told to go away and stop being a pest, as that is how it felt, was almost as bad as dealing silently with my condition. Getting the balance between the reality of doing a job, and being a compassionate human, really shouldn’t be that hard. Just as they learn a bedside manner for giving what they believe is bad news, surely they should learn one, for giving what is going to be for the patient, anything but good news. Yes, they do know we are desperate for help, being told they can’t give it, is almost equally as bad, as being told they have at last found it.

Body language, bravado, being business-like, playing all the acting games we each do daily, is essential for society, otherwise, well none of us really want to see that truth, but just occasionally, wouldn’t it be nice to have a true human to human interaction that isn’t cluttered with all those lies.


Please read my blog from 2 years ago today – 27/04/2014 – I survived

It is strange to look back and remember those hope we all had when we first set out on life for ourselves without the financial support of our families and no one sitting waiting for us to come home at the end of the day. For me well I had a short taste of about 18 months of being thrown out there, rather than launched when I was just 15. No matter how hard I think about it, the one thing I never felt was fear, nor did I ever feel there was the slightest possibility that I might just not make it. It wasn’t just the bravado of a teenager, but not making it, not having a life I would look back on and pat myself on the back for surviving with a touch of personal style, just wasn’t….

Positive “PIP”

As is the way often, everything always happens at the same time, this morning proved that perfectly. The lady from the DWP (department of work and pensions) arrived just after 11 am, a man from the electricity board arrived to read the meter, at about 11:45, and the plumber arrived at midday, the DWP lady, didn’t leave until 12:45. She was really a nice lady, not the monster that we had expected, over officious and so straight laced that sour would have been a compliment. We were both pleasantly surprised and what was supposed to be a straightforward interview, with Adam at my side, turned into a broken and stilted muddle, with me in the middle, just desperate to get it all over and done with. Adam, though, was doing his normal, chatting about nothing and making the whole thing take much longer than needed. To be honest, the lady who’s name I have totally forgotten, was happy to go along with their chats about nothing, while I sat there quietly stressing more and more. I know, that it should have put me at ease, but it didn’t. The proof, I was throughout slowly losing my voice even before she arrived and the longer she was here the worse it got.

When she first arrived, she told us a little about herself, that she was, in fact, a qualified nurse, not just someone who had done a ten-minute course, as all the online impressions I had read, implied. Yes, there had been a course, but it was mainly so that she knew exactly the information that the DWP required. Personally, she worked from home. The form she would complete once she returned there, would be sent to their head office, for the final evaluation. She went through the exact same questions that we answered on the form. As we answered each one, she added notes to the papers she had brought with her. Not once did she say anything other than that it matched with what we had already written down. She did add in an occasional extra question here and there, which allowed her to give a fuller picture, of my situation, and throughout it, she continued to try and put me at ease about the whole process.

The first break we had, was when Adam had to answer the door, she seemed to become aware that I had become more on edge when he left the room. She was right, although, I think she thought it was because we had been left alone, it wasn’t, it was simply because this huge man had appeared in the hallway. I didn’t explain it to her, but the guy unsettled me somewhat. I have to admit, that I was really glad, that it was Adam who answered the doorbell, and not me. He wasn’t here long and Adam was quickly back with us. To be honest, the rest of it all seemed to be chat, so when the plumber arrived, I was much more at ease. I had read online how people had been made to prove that they couldn’t walk, and other tests just as painful and mortifying for people in our position, there was none of that, it was simply all talking. Honestly, there wasn’t a single thing about the whole interview, that was difficult in any way. She herself said, that when my forms arrived at her home, she was left wondering why I was on her list to see at all? She felt my claim should have gone straight through, but it wasn’t up to her to question it, just to come out and do her job.

We sat for a while chatting while Adam spoke to the plumber. I asked her how often I was going to be expected to go through this whole process. She looked a little surprised and then said, I shouldn’t be saying this but….. “When I complete the process, not only will I be recommended the full high rate payment, but there is a box which I have to fill in, as to when a repeat visit should be made. I intend to say never”. I was shocked, and when Adam returned I told him, he too was shocked, as we were both firmly under the impression, that it would be an annual, or at least, biannual event. She confirmed what she said, it is up to the individual “Disability Analyst”, as that is their official title, to make that decision. She also added that if, and she stress the if, there are any problems, it won’t be down to anything that she will have written. If in the worst case scenario, they refuse me, she told us to appeal as, as far as she can see, I deserve the full rate payments, but we may have to wait for anything from six to eight weeks, before we receive a letter, confirming their decision.

So, that’s it. Just a wait for a letter and hopefully, the whole thing will be over and done with for good. If there is one thing I have learnt from this whole thing, it’s that you shouldn’t listen to the words of those who have had problems with the system. Even if it goes wrong and we have to fight for our money, to this point, there has been nothing, that I can honestly see, that all the worry and stress we have gone through, was worth it. I fully understand how those who genuinely need help, but have been refused it, must feel. If mine were to be turned down, I quite honestly don’t know how we would survive, even for the length of the appeal. But those of us who have been through the system and had a positive experience, at any point, really should shout louder. The forms, although extensive and often failed in the space required for a full answer, was in plain English and not something to be feared. Apparently we did the exactly right thing, we gave detailed answers on exactly what they asked, no more, no less. If you take your lead from the form, as that is the only information the want, it is easy enough. Make sure you put down the worst case scenario, not just how it is today, but how it is when the world stops and everything goes wrong. Granted, I needed Adam to read it to me, and then to write my words for me, but we can all find that sort of help, even if it has to come from the citizens advice, the help is there and it’s free. For many, I can see travelling somewhere for an appointment, might cause problems, but if you can go out socially, or to a hospital, you can go for an appointment. I simply put on my form the fact I was housebound, and without argument, I was sent an appointment at home. The lady who came here, was just that, a lady, and not a bureaucratic monster.

Yes, the whole system makes you feel as though you have to prove you are ill enough, but, once done, it’s done. If your condition is something that has a possibility of improvement, then a future visit may be required, but that is fair enough. Why should anyone have a payment for their entire lifetime, if they have recovered from whatever once made them eligible? Bear in mind, if your condition gets worse, you can request a new assessment to have your payments increases, if you’re on the lower banding. So please spread the word, PIP isn’t the end of life as we know it, it’s just a change in the system, and once done, well depending on your condition, it could be done and dusted forever.


Please read my blog from 2 years ago today – 26/04/2014 – What is an hour

Adam spent all of yesterday with his Mother, although it was the day after he always spends one day with her around his birthday, so I had a quiet day spent just doing what I do online and yes finishing off the remains of the carryout. When will I learn? I am now in day two of not feeling well thanks to my stomachs dislike of normal food, I actually woke in the middle of the night because it was so painful, I rarely wake due to pain, so it must have been bad. I was in bed and well asleep when he made it home, he was still on the bus heading back when I spoke to him to say good night and of course snoring on the settee when I got up, so nothing…….