Tag Archives: Progressive illness

Second class or lower

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Sometimes, it is good to stop, to take a little time to look at yourself, through the eyes of others. It is something I have tried to do throughout my life, but I think, I have reached the point, where I really have to stop doing it. It wouldn’t be a problem if the world understood what living with a chronic illness really means. Today is a perfect example. Today is pancake day, that means I have to spend a large part of it, making my Psyllium pancakes, essential to keeping my internal systems working. I have laid out before the work that it takes, the time that it takes and just how exhausting the whole process is to me. Trust me, this is probably the day in my current life, that has to be carried out frequently, that I hate. Through the eyes of others, it is one of those so what situations, yes, it takes a little time, and some work but anyone can do it, just get on with it. Through their eyes, I am just being lazy. That is the problem when you live with an invisible illness. It quite honestly doesn’t matter which one, if your illness doesn’t have you looking ill, drawn and haggard, then there is nothing wrong.

Even right now, if I let someone, which I normally don’t, to take a photo of me, apart from the wheelchair, I look fine. The fact that I can produce a daily blog, send out tweets and still be part of the world, just all adds up in the eyes of some, to my not being ill. Yes, I can see that. I can see it with ease and it worries me. It wouldn’t have worried me 30, 40 years ago, then it didn’t matter how you looked, if you were signed off by a doctor, who said you were not fit to work, the majority of people accepted it. There were a handful, as there always are, who would look at you quizzically, but they were the minority. What happened to this world, what changed in this world that means being ill, seriously ill, diagnosed with conditions that are killing you, that the majority now will question it? Worse still, our UK government even now question it. I clearly started questioning it a long time ago, as you will have seen from the picture I placed at the top of my introduction post, but something has changed out there, something has made the general public cynical about the whole subject of ill health.

Clearly, I don’t know what the situation is outside the UK, and my thoughts are being formed by what I see on the TV. What is coming across from the news, documentaries and other programs is a perception that we are all at it, we’re scammers who deserve to have our benefits taken from us, and that we should get off our backsides, and find a job. For that, I do to some extent blame our UK government. Their stance and treatment of the chronically ill is shameful. If a doctor has said this or that is wrong with a person, no one has the right, to question that fact and declare them fit for work. But I am not here to shout about politics, as I said, I see that as a factor, but that’s all. I actually think that the real problem is once again down to the media. I mentioned the other day that I was sat listening to a show on health. It was discussing all sort of things, from diet to genetics, it is the type of show that I watch frequently. I think that they are a large part of the issue, as they give the impression, that the majority of illnesses are now curable. Along with the amount of research, that is being declared almost daily as the new miracle cure, the impression is being fed to the masses that once again, the medical world has the answer for everything.

If you are a person, like the majority, who has had nothing to do with anyone with a chronic illness, other than those of old age, that Granny or Grandpa had, I can see where this impression is coming from. 40 years ago, no one heard any of the things that are now discussed freely on the TV. All they heard was what the individual told them, and people were more trusting. If someone said “I have MS”, they only thing they might ask, is “What is that?”. These days the names of conditions are banded about daily, but what they don’t say, is what it means to live with that condition, beyond the names of the symptoms. Hearing about different conditions is a double edged sword. On one hand, it raises the profile, which might be good, but on the other, it makes even the rarest conditions, suddenly mainstream, just like a cough or a cold. If that condition is mentioned alongside a possible cure, the “possible” is forgotten and the impression that remains is that all version and variable of that condition are curable, even when they’re not. I know that one well, my form of MS, PRMS doesn’t even have one single medication that has the slightest effect on it. Yet other forms of MS can find great benefits from an array of different drugs and MS isn’t the only condition this is true for.

Horrifically, on the news today, I heard that the rate of attacks and abuse towards the disabled is rising. Just as it is rising, so is the rates of discrimination towards us as well. Those are the worst end of it, but it feels as though, it is in line with the general attitude towards those who are ill and that we should just be getting on with earning a living and not taking from the state, regardless how ill we are. All that was part of what was behind my starting to write and to be on Twitter, but in the three years that I have been doing all this, it somehow feels as though things are worse out there than they were three years ago. I can’t put an exact date on it, but without a doubt, this change started somewhere in the 80’s and it’s growth isn’t slowing down. Don’t get me wrong, there are some wonderful people out there, people who are genuinely caring and understanding, but not as many as there once were. How we turn this around, put the brakes on and get the truth of not just the odd individual but the masses out there, I don’t know.

From time to time, the soap opera’s will introduce a character who has some illness, and they compact their story into a few short months. The most recent I can think of was a story line on MND. At first, it was well done, it showed the main symptoms that were visual, but, the biggest problem was the person they chose to actually have the disease. He was the nastiest, most unlikable person you could think of. His becoming ill was seen by the majority of those in the storyline as deserved. As though he was getting what was due to him. To me, this didn’t help our situation at all. Even his death was treated without respect and he is right now, hidden inside a wall. What could have been a wonderful opportunity to really show the suffering and pain, the effect of a terminal illness on everyone, not just the patient, was lost. It landed up as more a moral tail, be a nasty person and this is what will happen to you. Not helpful in any way.

I know the world is full of things that just don’t get the time and attention required to be shown in true depth to everyone. That is why I chose not to use my conditions as my pivot, but the whole spectrum of chronic illness. I don’t know how to change the world, but somehow, we have to put the brakes on, stop the decline in how we are treated, thought of and spoken about. None of us asked to be ill, none of us would choose this life. To choose it would be madness as somehow at some point we diminish, we become second class citizens and in some people’s eyes even lower. Who would choose that?

 

Please read my blog from 2 years ago today – 27/01/2014 – Being you

If anyone ever wanted proof that I am not the sort of woman who stares for ever at herself in a mirror, well here it is. Following my post of yesterday I stopped and actually looked at my face in the mirror, really looked and…….

 

 

 

 

 

 

 

Every solution breeds a problem

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For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.

 

Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

When it’s gone, it’s gone

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Since the weekend, I had been heading towards Wednesday with a clear plan for the day, a plan that was to start being put into action at 11 am. Adam knew all about it, but even though he doesn’t have the slightest reason for it, his memory is often almost as bad as mine. He came home for his lunch as usual at 12:20 and said nothing about it at all. So my error wasn’t touched upon and I carried on totally oblivious. In fact, there had been one huge reminder earlier in the day when the postman arrived bearing a parcel for me. Adam had ordered a new pack of Psyllium for me, in error, as I had enough to make at least 3 more batches of pancakes. Adam had even opened the parcel for me, so he too had received the same reminder, but even that didn’t remind either of us of the fact that I was supposed to be making the first batch of them from my chair. I didn’t actually remember at all about them until the time came that I should have been removing my daily one to defrosted, then I remembered there weren’t any left. How bad does two peoples memories have to be, to go through all that and still forget? So there I was an hour and a half behind on what I already knew was going to be a tough exercise to carry out. An hour and a half in which it should have been sitting quietly expanding as the yeast grew.

The parcel wasn’t the only thing to arrive in the post yesterday, I also received a letter from the hospital. I am to attend the dermatology department in four weeks time. It is actually the second appointment they have sent out to me, we had to change the first one which was for two weeks time as it was set for the late afternoon. We had to change it due to our knowledge of the NHS transport system. The original one was for 3:45 pm, we wouldn’t have been home until late evening at the earliest, making it a very long day for me. We have been unlucky enough in the past to have been not returned home until after 8 pm following a slightly earlier appointment than that. But worst case scenario, I might have had to spend the night, something the internal transport organiser warned us has happened in the recent past. The effect of a day like that is unbelievable for people with conditions like mine. Even the last one was still showing its impact several days later and with my health on the wain, I am not going to do anything that will upset it more than I have to. The new appointment may be further away, but at least I will be home that day. To me, though, this just shows how bad the entire system has become. My doctor, and we, are reasonably sure that the mole isn’t something to worry about, but if it turns out to be malignant, the outcome thanks to their system, well I don’t even want to go there.

I suppose that it is something that all of us who are ill have to learn to live with, but I actually wish I could turn the clock back for one reason and one reason only. From about 4 months after I became housebound, I cut all contact with the NHS. I had woken up to the ultimate truth, that they couldn’t do a single thing for me. I had had enough of being sent here there and everywhere for nothing. Test, examinations and wasteful conversations, all without anything other than the tiniest change, that usually changed nothing, drove me to just call a halt to it all. For 4 nearly 5 glorious years, I never saw a single doctor. I spoke occasionally to my GP, to tweak my meds, but other than that, I kept them all away from me. I knew without a doubt that my health was still slowly moving downwards, but it was livable. If I could turn the clock back, knowing what I do now, I wouldn’t have gone to the hospital when I first did regarding my breathing and intestinal issues. In fact, I really don’t know what it was that made me go when I did. At the time, little happened other than a lot of tests and the diagnosis of COPD, plus a couple of new meds. In all honesty, I probably could have waited until this year, as the two visits I have had this year were the ones that started to bring solutions. It has been my experience that once doctors get hold of you, they don’t let go and normally just waste your time and theirs in the main. If there is something that I long for now more than anything else, is the return of that peace. Just now, my life feels so full of medical people, that it almost like they are hiding in the shadows of my vision just waiting to jump out and say hello. Which is probably why I have chosen not to mention to any of them a new symptom that has appeared.

Actually, it’s not totally new, more an advancement of one. I know for a fact that I have mentioned at least once that I have lost all feeling in the center of my face from time to time. I can’t put a number on how many times I have felt it, I just know it has been happening on and off for a couple of years. At first it was just numbness and tingling. It filled a very clear triangle from midway down my nose, out to about a centimeter below and wider than the edges of my mouth. Over time, the numbness stretched into totally nothing, as though they had been cut free of me and there was a gaping hole in their place. Whichever version it was, it never lasted more than maybe 20 minutes and always returned to normal afterwards. Like so many sensations that my PRMS can create, it was annoying and occasionally a touch distressing, but it wasn’t really doing me any harm. About two months ago, I found myself occasionally being certain that I was dribbling from the right-hand side of my mouth, but when I checked it was perfectly dry. It would hang around for a while then like always vanish. For about the same length of time, the numbness and tingling was also more frequent, but I thought little of it, in the bigger picture of life, it was unimportant. Last week, suddenly I was having one version of sensation or another several times a day, it was clear rise and was the first time that I started to feel the same sensation starting to spread outside of the triangle.

On Sunday night, I woke up just before midnight, I had a headache from hell again and a high pitched squeal that filled my head, not like tinnitus which I have had for years, this filled my head, not my ears. I felt as though I had some kind of helmet on that was causing an even pressure over my entire head and yes, the entire triangle was gone, there was nothing but the hole. I was feeling terrible and I was reasonably sure that once again, my oxygen levels were low, but I had left my meter in the living room, so I couldn’t check. Oddly, for most people, but not for me, I was more worried about my missing face, than the possible fact I was missing oxygen from my body. This time, it had gone further, it wasn’t just the surface of my skin, but it went on inside my outer face, as though a large area had been gouged out. I got up with some difficulty and the steering of my wheelchair was so bad that the clattering brought Adam out of the living room to see if I was OK. I told him I wasn’t feeling right, but all I wanted was a cigarette and to sit for a while in the dark of the kitchen. Once my face felt more like my own, I went back to bed and thought little more of it. That was until the next day. The sensation as though I were dribbling is now permanent, it hasn’t gone at all since, and other things have slowly been joining in and spreading.

This morning, I woke to find that almost my entire right side of my face is now mildly numb like it is coming out of a local anesthetic. My eye itself and the bridge of my nose haven’t joined in yet, but it is clearly there right up to my cheekbone and around the outer edge of my eye, temple and a third of the way over my brow. It has also now left just my face, it’s right out to my ear and had gone below my jaw line and now goes under my chin and into the top of my neck. For the first time since Monday night, I am also experiencing numbness inside my mouth and around my gums, just again on the right. Clearly something major is happening to the nerves in my face, but I can’t think of a single reason why I should mention it to my Doctor. I know, just as when I lost my left hand, there is nothing they can do about it, but there is still this feeling that I should tell them. I guess, there is still this little part of me that hopes they will actually be of use in a crisis, despite it never happening before. There is like for so many other things in my life, nothing anyone can do other than wait and see what happens next. If I am lucky, it will settle down and return to normal, if not it will continue until it reaches its final planned result.

Please read my blog from 2 years ago today – 24/09/2013 – Chronic illness break down

I keep waking with terrible pain in my left heel, I know that that sounds really minor and stupid on the scale of things I live with, but it’s something I don’t totally understand. The pain can vary as to which……

The point of strength

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For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

The hierarchy of illness

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My head is full of so many different things to write about this morning. I spent some time yesterday reading other people’s blogs and I came away with so many updates that I could make to various posts I made years ago. I know it is impossible, but I do try hard to not write about any topic I have already covered in a dedicated post. Clearly there will always be things that overlap but that is the point in writing daily, life and our opinions about it are always changing.

I woke this morning once more with a headache and the desperate need to go to the loo. I had already managed to return to sleep twice, by the time I knew that once more and my bladder would explode. It was early again, just 7:10 and I knew that I was losing more than an hours sleep, but with already having a thumping head, I also knew any more sleep wasn’t a good idea. All my life I have lived with this inability to go back to sleep once I have the knowledge that it is past 7 am. That I suppose was my mistake this morning, I looked at the clock, that knowledge was enough for me to say, bladder you win. Everything in life is always this complex mix of tiny pieces of knowledge joined together, yet we all have this habit of putting the blame on just one. That is a statement that is never truer than when it comes to our health. I for one have this habit of blaming everything on my PRMS. Granted it is the most serious of all of them, well until my COPD steps up a level it is. Yet, I rarely ever sit here thinking about could this be coming from this or that, in my head it has to be my PRMS. It wasn’t the first diagnosis, that was my Fibro and despite the fact they both affect my entire body, I have decided that my PRMS is the more major of the two, so it has to be in control. There is the most ridiculous concept I have come up with. I doubt that you will find it written anywhere that there is a hierarchy of illnesses. The idea that my Fibro doesn’t cause me pain somewhere because my PRMS got there first, or that my PRMS can muscle my Fibro out of somewhere like some kind of bully, is truly nuts. I just had this great image, of my Fibro wondering around inside me and meeting my PRMS face to face, taking a deep and reverential bow, before slowly backing away. I am not the only one who has created a hierarchy of illnesses and it is probably the place that I have picked it up from, the medical profession. In fact, without a doubt that is where I developed this beast of battling conditions, except mine is in my head, the medical profession have made it totally real.

I discovered a long time ago if I was speaking to either a nurse or a doctor and I said I had Fibro, there was a polite nod of their head. If I said I had PRMS, there was a sudden and clear expression of concern and some would even express their commiserations. It was the same when it came to me giving them a list of all the things I had been diagnosed with, nearly all got that nod, but my PRMS got their attention. I thought at first that that was because I had a rare condition, something they would get few opertunities to see and treat. Some, I am sure that was just it, but I also discovered that it changed my actual speed and type of treatments as well. I have come across many people with Fibro now who clearly suffer truly high levels of pain, but when I talk to most in this country, their treatment for this pain appears nothing but pitiful. I have never been, nor have I ever heard of anyone who has a dedicated Fibro nurse to turn to for help. I have two dedicated MS nurses. One who visits me at home once a year from the GP service in Glasgow and another who is fixed at the hospital. I also have direct contact into the community nursing service, something none of the Fibro patients I have spoken to have even heard of. The two conditions share a huge number of symptoms, they are both debilitating and painful conditions, which can at their worst leave you housebound or even bed bound. On the medical hierarchy, MS is clearly miles above Fibro.

I also came across it last month with the receptionist at my GP Practise. I called and asked to speak to the doctor because I was having problems breathing. The receptionist didn’t seem very interested and it was her that asked in her disinterested tone “Is it Asthma?”. I actually do have Asthma, and I have a sister and two nieces who in their homes have oxygen because their Asthma is counted as deadly. I answered the receptionist by correcting her and say it was my COPD. Suddenly she was interested, she even spoke faster and reassured me she would get the doctor to call me straight away. Another clear hierarchy, but with two conditions that are equally possible to be killed by in minutes. One of the blogs that I read yesterday also had a clear hierarchy created by the author, so no, I’m not going to link to it or even name the conditions, but it was that that made me think. There must be millions of people out there suffering daily with conditions that are totally life changing or even threatening but because they aren’t high on their own doctors, or the NHS hierarchy aren’t receiving the level of care that they should be. I also doubt it is restricted to the NHS either.

To me, it doesn’t matter which of my conditions it is that is causing me pain, or whether it is my Asthma or my COPD that is stopping me from breathing, it deserves the same speed and care of treatment. As odd as it might sound, I have been lucky to be diagnosed with two serious life threating conditions. Come what may, I am always treated with speed and care. I don’t think even the doctors can tell all of the time from which condition my problem stems from, but to cover their backs they treat me as though it belongs to the worse possible choice. I said I was lucky because clearly there are people out there who don’t get that care. Who aren’t on the strong painkillers they might need because their condition isn’t high enough up the list. In an odd way, I actually think that the old complaint of being seen as a condition and not a person needs to be changed. I think there is a case to be put forward, that maybe we need to be treated for our symptoms, not our conditions. Personally if I am in severe pain, I want that pain treated immediately. It doesn’t matter to me if that pain is coming from my Fibro, my PRMS or a broken leg, treat the pain, then look to the cause. I fear that there are people everywhere right now in pain that could be treated. In fact, I know there are.

The system in Glasgow is that once you have your diagnosis of MS, you only see the consultant once a year. Every time I went to the consultant, he changed my meds to help with the pain. It didn’t always help, if it did it didn’t last and I had a year of pain before seeing the person who could change it again. It was only 8 years ago that they eventually put me onto Morphine and asked my GP to work with me to find the right level. I had had years of increasing pain that went almost untreated. If it happened to me, I know it is happening right now to others. Illness is personal, it doesn’t matter what the condition is, what matters is how the person who has it, is actually coping with and reacting to it. I’m not just talking about pain either. I understand pain too well, so it is often the thing I focus on. I have developed the attitude that if it doesn’t hurt, I can deal with anything. Right or wrong, that is how I handle my health, but not everyone will. Others will find different symptoms as the ones that distress them the most and what that symptom is, doesn’t matter. If someone is living with anything that distresses them, it is a threat to their mental health. I am not suggesting that a splinter should be treated like a heart attack, but all chronic conditions should at least be given the respect required to make life better, not worse.

Please read my blog from 2 years ago – 07/08/2013 – Time to rest and revive

Yesterday the paper work from the company who asked me to make a video with them as part of the new site for people with COPD, I had already received them on PDF, I don’t know why, but I really hate PDF, it’s just one of those stupid things, I took a dislike to it when it was still in development and ……. https://livinginalimitedworld.com/2014/08/07/time-to-rest-revive-19070526/