Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

The first Twenty Four

Unbelievably, the first day in my chair has left me with bruises and pain almost everywhere. Well, if I am being honest, I wasn’t in the chair when I got the bruise, that happened when I fell over it. I did expect to land up with painful arms and upper chest muscles, that was something I remember from when the chair first arrived in my life. What I didn’t expect and probably should have, was that it was going to upset and trigger spasms in my chest. More proof if it were needed, that there is nothing in this life that doesn’t have a price that has to be paid for it. My legs felt so much better yesterday, just being allowed to relax and not be taxed by the constant weight of moving me around, made it feel at first like a dream. As the day went on and I was on my third or the fourth spin around the flat and there was the first spasm in my upper intercostal muscles. I was just lining my chair up so that I could park it up until next needed, when bang, there was that unmistakable pain. My upper chest muscles don’t usually get involved unless there are no others left to summon into the fray. They are like this final line of normality, determined to stand for peace, but drawn into the war once it reaches them. But there they were screaming away, alone. I suppose I should have expected it, but we often miss the most obvious things and they haven’t totally shut up since. By bed time, I was once more reaching for my Morphine boosters as I was desperate for sleep and not convinced that they or the rest of my aching muscle would let me rest at all.

I had every problem that I expected to have and it wasn’t until this morning that I finally managed a trip consisting of visiting two rooms and back to the living room, without hitting anything! To be fair yesterday it was more touching or scraping past, but today I didn’t even touch anything with my chair at all. I know it is going to take time for me to manage that one consistently, but I am sure I will get there. Like most homes, this place isn’t designed for wheelchairs. The carpets and rugs that I so love make it all far more difficult as the chair doesn’t want to turn on them. Every rug has a varied height of lip that has to be climbed, and every room has at least one, but it is the woollen pile of the carpet that is worst. It is like a glue grasping hold of the wheels making the effort required to move at all a hundred times harder. The tray/bag works perfectly, bumps or not, but I do need a small box or another tray so that I can transfer my collection of items from the chair to my desk, or back again. One thing I had never thought about at all was the telephone. There isn’t a single one in the house that I can reach once I am sat down, so I have to remember to take the one from the desk with me where ever I go. Even though I can reach every light switch, they aren’t always where I need them for lighting my travels through the house, nor are the light sources. I have realised that I need something like a headlight as I need to see inches in front of me, while the rest of me, blokes out whatever light there is. There are so many little things, things that you would never think of until you are actually trying to do those everyday tasks.

Adam is being even more of a darling than normal. He is running around fetching and carrying things so that I don’t have to keep going back and forward more than needed. It is actually quite sweet and funny at the same time. He has always wanted to do things for me, it has been me who has told him to sit still and that I can manage for myself, but having the chair is changing my viewpoint and letting him take on the role that I forbid him too. Right now getting around takes so much effort and concentration, that once I have reached my destination, I had no desire to go back for the things I forgot to take with me. I found myself not just letting him do things for me, but asking him for his help. In an odd way, it is almost as though yesterday evening was the first night of my being really disabled. He fetched me drinks, including my gin and tonic, something I normally don’t let him anywhere near, my tablets and even the glasses that I brought to the settee then dropped no the floor, because I forgot they were on my lap. Whatever was needed, he was there.

For a long time, he has said that he felt as though he never really did anything for me. To me the fact that he does all the housework, all the washing, clean sheets the bed and deals with all my mail and phone calls, plus sorts out all my meds, isn’t nothing. Clearly though, from here on in, he is going to have to do far more as well. I think he is very aware of how difficult I am finding all this and not only on the physical level. Even when I woke during the night to go to the loo, he was suddenly there, making sure I was OK and not needing his help. I am sure that both of us will settle into how all this is going to work given a little time. That eventually, my upper body will not only get used to the work but that I will know instinctively how to get through every door without touching anything, even in total darkness. Once Adam can see that I am really managing, then he too will settle and just let me get on with it. In some ways, I actually think this might be good for both of us. I will feel safe and he will not only have the peace of mind of my safety, but also he will have the element of caring for me that has been missing for him, and has at times, actually made him feel guilty for in his mind, for not doing.

It is so hard to get the balance right for both ourselves and those who care for us. Over the time since I was diagnosed, Adams involvement has slowly increased. I know now that he wanted to be involved in all of it from the beginning, it was me that kept him out of it unless there was no other option. I thought, wrongly, that I had to show him that I could deal with anything, that that was the way that he would then not worry. In fact, what I was doing was making him feel useless. He wanted to care, to show that he cared and to take care of me, not as a cripple but as his wife. The pair of us were on different pages and not talking about it to even try and bring us together. It took years, not until my health started to demand his help did I let him fully into my health. Yes, he knew about the pain, the tiredness and so on, but I wasn’t going to show any more than I could help, and what he saw was what his knowledge was based on. It wasn’t until I was housebound that I totally let him in, let him see just how difficult things were and to attend hospital appointment with me, I know now, that was wrong. I was fiercely independent and he is all-encompassing teddy bear who exists to care and love and be the perfect companion, carer and life partner. My wheelchair is and will always restrict my independence, but it has opened the door to letting Adam even further into my life. It has created a new balance and new world for both of us.

I nearly forget those bruises. Yes, I really did fall over my wheelchair. Ironically, it is the first fall I have had for about a week and the first time I have hurt myself for at least a month. It was plain and simple stupidity and my eyesight. My right eye is almost blind in the middle, so looking directly ahead, I miss much. The problem was quite simple, I forgot what programme I wanted to watch next. I had brought up the menu, but couldn’t make out which line the programme was on from here. Normally, I would stand up and walk towards the TV until I could see. I totally forgot the wheelchair was there. With it being black and the room being dark, well I walked straight into it, bashing my shins off the foot rest. I fell forwards onto the chair, so I was otherwise fine, but my poor shins took a real bashing. There is an answer that I nearly sorted out several months ago, but just didn’t bother. All I need to do is buy an HDMI cable and connect my PC to the TV, that way I would be able to bring the screen up right in front of me on this screen. Cheap, simple and probably worth the little effort required to make me safe from any more bruisings.

Please read my post from 2 years ago – 16/09/2013 – Time to say it

I was warned that when I switched from my Oxycontin to MST that MST could cause some strange and to some disturbing dreams, well I am glad to report I haven’t found them disturbing, just a little odd, especially as I rarely in the past have ever recalled my dreams the next day. I think I had been on them……

The ogre in my life

I found myself once again shuffling what had to be done and not doing all of it, despite there being more than enough time. Not too surprisingly the job that never got done, was the one that I hated the most, picking up the phone and talking to people. It doesn’t seem to matter whether the reason for the call is social or essential, I will avoid it like the plague. It’s so odd this fear I have developed of the phone and it is a fear, I honestly don’t want to even touch the thing if Adam is here to deal with it. Many of my working years were spent doing just that talking on the phone. I worked in Telesales for quite a while and I am still proud of the fact that I was really good at it, but I was good because I chatted with the people I spoke to rather than reading a script to them. In fact, communication has been my main work skill that traveled from job to job with me until I started to slur and stutter. I know it isn’t that alone that make me do anything but pick up the handset. I honestly feel scared now by the muddle that I know I am capable of creating without even trying these days. The mess that I jokingly call my brain is something I don’t even think about when I am talking with Adam. I can talk about anything with him, bring in a stranger and I am demolished into a verbal muddle. Strangers don’t have the patience to just go slowly with me, they all do the same thing, they try to fill in the blanks that I get stuck in and usually get it wrong. I am suddenly faced with someone who is talking at me about something I hadn’t called about and it becomes really hard for me to hold onto what I called to say and to shut them up long enough to get my question out and hopefully answered. The phone has to be my worst nightmare these days and I will do anything that I can to avoid it, even when that call could or is to my own advantage or vital to my health and happiness.

It’s so hard for those who don’t live with a brain and/or speech problems to do what they all know is the right thing, to stay quiet and just listen to the person rather than talk for them. Human nature seems to be programmed to be either “helpful” or impatient, the actual ability to deal with the person, rather than our own time, is low on our personal scales. I used to be as guilty until I had a friend who just like I am now, would become locked into a word and unable to finish a sentence. It was my first taster of just how something that is actually a tiny issue can take over a person life and even their very personality. I learned it when I was young enough to take it on through my life, the thing I had learned that most people miss, is to listen to the person, not their words. I know that sounds odd but what I mean by it is that every person talks in a different way, different accents and with different issues. When you listen to the person, you are really listening, not skipping ahead or past them and it’s a skill you have to practice with everyone, that way you never get it wrong. Rather than you governing the pace and subject, you have to respect theirs and find the balance between you.

It is so frustrating when someone else finishes what you are saying for you, especially when they get it wrong. When you are face to face with someone you can make it clear that you need help to find the word or that you want to be left to find it yourself. I have developed some facial and hand signals that Adam now knows, so I can show him if or if not I want help. They are nothing elaborate and I am sure that even a stranger would understand them, but the phone means that you can’t be seen. It means the person on the other end, especially if they are at work and just want to get you off the phone so they can do everything else, doesn’t have the slightest idea of the issues you live with. We might as well be on different planets and speaking different languages as our ability to fully understand a person we can’t see, is zero. Human communication is actually far more about body language than the words we say, so the phone is alien to us anyway. Add in a speech impediment and a dose of brain damage and that phone becomes an ogre.

Just as I have handed over the job of opening all my mail to Adam, where and when it is possible for him to make a call for me, I will ask him to do so. The problem with this one is that it involves my doctor and my medications, they are things that I don’t know if they would accept a call from him on my behalf. We are still far from the edge of him having to do everything for me, the point when we would clearly have to inform all the relevant people that he has my authority to do these things on my behalf. Everything in life seems to have these grey areas, the points when things aren’t bad enough for the full power of attorny isn’t required, but the option for help isn’t available. The rules on all these things are so black and white but the reality is that life never is. The unfortunate things are that it takes some kind of crisis to highlight when that point has been reached and unless it is sorted out and ready to go, well you are stuck. So OK, we didn’t need a legal status change for Adam to open my mail, but it took my finding myself totally distressed by what in reality was nothing more than my brain getting it all so wrong. What crisis has to occur to prove that I need help with the next thing or the one after that? Why does life have to fall into the abyss before there is a safety net there to assist if not totally catch us?

I suspect that there are millions of people out there right now in this very situation and every single one of us is doing the same thing. Pushing it to the back of our minds and just hoping that it will all be OK for a long time to come. The danger is, that not one of us can be sure that the abyss isn’t going to open up in front of us in the next second. Chronic illness is scary, it is a monster that has more arms and more legs than any of us want to think about. To me, being independent is important, but there are days, situations and events that at that second, I don’t have the ability to deal with. The buzz of facing a challenge and achieving isn’t big enough any longer to out shadow the fear of finding myself flat on my face. Right now I am in nowhere land, not disabled enough to just hand every aspect of my life into the hands of others, but definitely in need of a strong guiding hand.

Read my blog from 2 years ago today – 30/06/13 – Stifled by perception

I now know that Teressa and John will be here on Tuesday and Thursday, I’m not clear yet at what time as she phoned yesterday afternoon when I was asleep and, of course, there was no set time. I suppose it is all rather vague right at that second as they are staying with friends and what they are doing when will also have to be part of the equation. So I am just forewarn you all that my posts may be a little-broken or…….

A purposeful coincidence

If there is one thing in life I love, it has to be coincidences, those things that appear from nowhere and match up like some kind of spooky voodoo. I always organise my set Tweets either one or even two days in advance, especially the quotes as they don’t relate to anything other than the fact I like them. It had to have been Saturday when I set up this quote “I may not have gone where I intended to go, but I think I have ended up where I needed to be. – Douglas Adams” to be sent on Monday along with another 17 totally unconnected quotes. It was pure coincidence that on Monday I wrote about the fact that due to being housebound and my illness, I had connected to several things that made me feel so much better as a person. When the quote went out someone replied saying “I don’t think you really mean that Pam, do you…”, I had forgotten about the quote until I saw the response and without thinking I replied, “Well actually, I think I do”. If I hadn’t just written a post on finding happiness in my illness, I don’t think that would have been my answer, as I realised as I was writing it that I actually have much to be grateful for my situation, not just the time that allowed me to rebuild parts of my inner self and a new understanding of life which I had totally missed when I was out there living it. After I answered the tweet I sat for a while and I thought about it even further and I realised that it all went a lot deeper than that.

The more I thought about it, the more I started to realise that this probably is where I was meant to be, maybe not in actual location, as in housebound, but where I was supposed to be as a person. I have written before how about my life had been more drifting from one thing to another with little thought about what job or where I was going to live, it all just sort of happened to me. Opportunities would appear and I always just went with them, with the background thought of “Well if it goes wrong, I can start over again”, starting over has been part of my life since I was a child and not even now, does it hold any fear for me. It doesn’t matter what reincarnation of myself you chose to look at, there is one thing they all have in common, I have always gone for it 100%, I had to do whatever it was at the highest standard I could achieve. From the housewife and mother who didn’t just cook and clean, but made clothes for the whole family, baked fresh bread and cakes daily and kept an entire house that was permanently perfect; to the only professional female DJ in Scotland and I made sure there wasn’t a genera that I couldn’t handle; to the sales person who outsold all around her and did it honestly; to the Operations Manager who learned to program so I could build quickly bespoke software to cover every aspect of my job; all to my highest standard. So it shouldn’t be a surprise that when I found myself housebound that I was going to take this opportunity and find the way of adding value to this reincarnation as well. You would have to be mad to want to be housebound, but here I am and here I have to stay.

The third coincidence I think came on Tuesday, I was asked if I had been able to find meaningful work from home, I had to answer honestly and say that despite nearly two years of applying for anything suitable and sending out my CV to every employment agency I could find in the UK, the answer was no. No real companies want to offer real jobs to people who can’t get to their offices and that appears to be a fact. I worked at home for three years, but that was for a company I had already worked for for nearly 10 years when I became housebound. There are millions of companies out there who advertise for home workers, but you won’t make money out of it, the jobs aren’t real and should be avoided, especially those who ask for money from you before you start, to buy kits and so on. I know that I don’t make a penny from what I do online, despite the ads that everyone thinks make you a fourtune, the truth is people don’t click them often enough for them to generate anything like enough money to call them worthwhile, mine make enough to pay for this site and that is it, but this is my job. I created what for me is something I treat like a job, as it fills that space with a useful activity. Then I was asked today if I could advise someone on how to survive their llness and I sent them a link to my “seven steps” post, which is something that I still believe in, but their question was the fourth coincidence and it pushed me into writing this post. I realised that the one thing missing from those seven steps is something that has to come from ourselves, others can inspire it, but we have to apply it and that detemination, if your not determoned to make your life as useful as possible, you are going to find life hard and that goes across the healthy and the chronically ill.

Four things that are all about the same thing and something that is amazingly important, our quality of life and how we see ourselves. Yes, in a strange way I do now think this is where I was supposed to be, because I have taken what could have been a depressing and difficult thing to deal with and I have found the good in it and used it for good. I have built something I am proud of and although it doesn’t make money, I am as committed to this as I was everything else that I have done in my life. If we can find one thing, it doesn’t matter what it is, but something that inspires ourselves and we find fufilling, it is going to make us happy, earnings or not and none of us can survive chronic illness without happiness. It is a hard road at first, but even with all the downsides that I talk about here in my posts, there are just as many upsides that I talk about as well, but they are all things that we have to be determinded to succeed with or the result will be not worth thinking about. I think the quote from Douglas Alan fits my life really well, but it also speaks to all of us, as where ever we are, if we can find the good and make it work for us, well eventually we will feel as though what took us there did have a purpose after all.

Read my blog from 2 years ago today – 22/04/13 – Soothing the fears

The week starts again and Adam has headed out to work which, of course, means once more I am on my own. I find it strange how many people find being alone so hare to bare, just this morning I read a tweet from someone who is still able-bodied but it facing a future of possible housebound existence, and although there is only 140chars to send as a message, I could feel their pain and fear towards the whole idea. Maybe the fact that……

One day

Over the last couple of days, my diaphragm has been driving me mad. It isn’t the fact that I have to spend my time constantly thinking about getting enough oxygen into my system without being in ridiculous amounts of pain, it is just the constant pressure and discomfort that really gets to me. Pain can be managed, I know that and yes I manage it to the best of my ability, but to date, I have found nothing that actually makes sitting with a constant pressure band around my midriff comfortable, Morphine and doing my best to keep the muscles that I can control relaxed just isn’t enough. Everyone focuses on pain when you have something like PRMS, Fibro or COPD when you have all three, well that seems to be all that they see, my pain, trust me discomfort is just as bad especially when it never seems to give in and just give you peace. In many ways, I would actually go as far as to say that it is worse than pain, as pain has an answer in the shape of a little blue booster pill, the pain leaves but that discomfort, it never leaves unless it chooses to. My entire day is spent shifting, moving and trying to relieve it, there doesn’t seem to be any pill that I have that makes a difference and to make things even worse, it just doesn’t change, it just goes on and on and on.

Last night when I went to bed I was in true pain, the usual mix of the left side being sliced through by a sword and my right being hacked at by a saw, while a piece of razor wire is wrapped around me daring me to take just one deep breath. I took a booster pill and lay down waiting for it to take over and for sleep to take me out of the whole situation. Just like so many nights in the past year, I lay there scared of not taking deep enough breaths to ensure there was enough oxygen in my system. When I was having the tests that showed up the COPD and the fact that the spasms were affecting my breathing, one of the tests they did was to just put a monitor on my finger to measure the oxygen in my blood. At that point, I was once more shallow breathing and I was shocked to see that the oxygen in my system was far too low. Ever since then I have done everything I can to not take more than four or five shallow breaths without then taking a deeper one, but the problem is always the pain and discomfort. I know also that that is another reason why I am always so desperate to go to sleep as I know my body will adjust and take care of itself without my worrying about it. I lay there awake long enough for the pain to subside and for me to be left just with that band that was grasping at me tightly, just as it is right now. The pressure over my kidneys and right across my front was the only thing left that I could feel and despite going right through my relaxation system, nothing was shifting it. Sleep, regardless of how much you are craving it is hard to find on nights like that and the result is always the same, stupid things enter your head and start chasing each other around, making things even worse. I don’t think it actually took me that long to slip off, but neither did it take long for me to wake again when the booster pill wore off, leaving me to having to go through the whole palaver over again. For some reason, the middle of the night session is always the one that take the longest to return to sleep again from. I am sure that it is because I have had some rest, but not nearly enough and I was getting less and less by the minute.

Half an hour before the alarm sounded, I woke suddenly and did what is the closest I ever get to flying out of bed, a sort of slow twist with a stiff flip would be a better description. To top off my night, I had what I have reported before as the worst spam in hell as you simply can’t break it, right between my legs but so deep inside nothing reaches it. Between that and my diaphragm, I couldn’t even get myself dressed, all I could manage was my top and to grab the rest of my clothes and leave the room without waking Adam. I knew from experience that I wasn’t going to be able to sit to put on the rest of my clothes, I went to the only place that I could think of where no pressure would be applied, the loo. It isn’t an ideal place to try and reach my feet to put on my socks or even get my legs into my trousers, but it was the only place that I had the slightest chance of achieving such a simple act. I then spent the next fifteen minutes of my day sitting on the arm of the settee, trying to find some way of applying pressure, for once I did have some success, well either that or the Morphine kicked in super fast. Right now, despite all my daytime meds, discomfort still reins, including a shadow ache where I would rather not have one as I can do little during the day but sit. This post is beginning to feel like one long moan, but it’s not, it’s more a case of saying to those who don’t live inside a chronic condition that pain isn’t the worst thing there is, there are things that can’t be changed and plague our lives in a way that is hard to get across in any other way than I have. Just like a moan, it goes on and on and nags away at you like a reminder that you really don’t need.

One day, its the dream that most of us live with, just that one day, one day they will find a cure, one day they will fix the pain, one day they will bring back the comfortable we no longer know. One day I will be able to walk without waddeling or dragging a foot, one day I won’t have even a minute of that feeling of being cut in two. One day I will be able to lie down and feel the comfort of my bed rather than the band that squeezes the air out of me, but one day just gets further and further away, rather than closer. What ever our condition is or the drugs that they give to us, the one thing that seems to be missing is the understanding that comfort is probably the most important thing that they could possibly work on for those of us who won’t be here to see the other one days.

Read my blog from 2 years ago today – 21/04/13 – Inviting in the inquisition

I was a foster child from the age of 13 to 16, it left me with a really negative impression of the social work departments, it wasn’t that they failed me, actually they didn’t. I was given exactly the care I needed at the time I needed it, including them knowing I needed to be on my own before I was even 16, I was responsible for myself living in the YWCA. So their assessment and provision of services tailored to my needs, well I have to give them 10 out of 10, but I have still this total negative feeling towards them……