The hierarchy of illness

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 …….

Notes for consultant

Well, the day has arrived, today is the day that I am heading off to the hospital to see the consultant at last. Clearly, that left me with a problem as I can’t be in two places at the same time and although I am very aware that those with good eyesight and dexterity can now type up screeds of stuff on a smartphone, I’m not one of them. With luck I could be home by lunchtime, but I might as in the past be stuck there until this evening, either way, I doubt very much that I will be up to writing about what happened. Even without the stress of the consultation an outing via a stairclimber and an ambulance isn’t my idea of a restful way to spend my day, I will be totally knackered. Luckily, I had without realising it already written today’s post, below are the details that I am taking with me in the hope that the doctor will read it and gain a better understanding of exactly what is happening to me and then might actually be able to help me with something better than the medicines provided by my GP. I am aware that the doctor will already have my GP’s version of this, detailing all the medications we tried and that I am still on, so they aren’t mentioned below as I thought that wasn’t of importance when it came to my side of the picture. All I can do is hand it to him and hope that it has an effect other than being tossed to one side and ignored.

Following the array of tests carried out two years ago, nothing other than my PRMS was found to be behind the constipation and pain that I had been living with at that point for over a year. I left here being told to simply continues with what I was already doing, but the levels of pain kept rising, the pressure and discomfort kept increasing. I was spending more and more time in discomfort and totally unable to empty my bowels without again taking large quantities of laxative. Sena no longer worked at all even when taking 6 tablet nightly, so I had switched to Dulcolax which at first worked , although occasionally I had to take 2 a night for anything up to 4 nights, at that point I started increasing the actual dose, but with very mixed success.

In January, I found myself totally unable to pass anything although I hadn’t been to the loo for about 3 weeks, I admit that I had totally forgotten about it, but I had had no feeling to say that I needed to go at any point. I took a normal 2 Dulcolax and the next morning I knew that there were stools sitting lower in my bowel at last. I tried for over an hour to pass one stool, the pain was so bad that I was breaking out in sweats and feeling like I would pass out. I had no option other than to do something I find physically difficult, I had to reach around and then also insert a finger to try and break it up. When I did I was surprised to find that instead of the tube shape I expected, what I found was more like a bag filled with liquid and with three stools which had plenty of space to move around, they were very difficult to pin anywhere, but I did eventually manage to break up the biggest one. When I did it was really soft and broke with ease, I manage to clear all three which were all large & shaped more like a fist than any stool I was familiar with. Over the next three days with the use of 3 Dulcolax per night, I passed two or three more lumps each day, each was accompanied by a several hours of pain as they slowly moved across the top of my stomach and especially painful as they passed through the left-hand corner before gravity seemed to help them move lower. I still knew I wasn’t clear so I took 5 Dulcolax, which worked, but the pain was incredible, my entire intestine seemed to struggle in the whole process until again it passed the left-hand corner. Throughout the whole 4 days, I was leaking drips of fiber filled water uncontrollably.

From that day on I have had the same and worse problems despite my doctor trying to help with different medications, I now take 30mls of lactulose twice daily which has softened the stools making them more comfortable on their journey, but it is still painful frequently painful. I still have to take laxatives to make my bowels actually partially empty once a week, but it is rare that I feel it has totally cleared. For the last month and half, everything I have passed has been no thicker than a finger or pencil and varies from formed and comfortable, to a whipped cream consistency, but I am now caught in a spiral that is making life impossible.

The worst of the pain is over the top of my stomach with two points either side where the worst of the pain is centered. On the left it is as though there is something trying to push out from under my ribs, there are two points that it appears occasionally at the same time and frequently accompanied by what I would call a pulsing vein sensation. It is a sharp, crushing, yet cutting pain and causes a true feeling or pressure. The pain on the right is also just under my ribcage but is more a gnawing, sawing pain, which again has a strong pressure to it. It is normal that the two points are joined across my front by a band of pressure/pain. All of them act as a trigger to a problem that I have with both my diaphragm and intercostal muscles, when triggered they go into spasm and make it hard to breath beyond a shallow breath pattern, one that often makes me light headed. I also get strong points of pain low in my right-hand side of my abdomen and just to the left of my belly button, but there is a general ache across all of my abdomen a lot of the time. When things are at their worst, I can’t even bear to lay a hand on it as the pain is too much to stand for more than a few seconds.

Until January and for the previous 4 years I have slept between 12 and 13 hours out of every 24. I go to bed at 9pm and slept right through until 7:30am, plus took a nap of 1 or 2 hours every afternoon. Without that amount of sleep, my PRMS goes into overdrive and I am left feeling incredibly weak and ill. Since January, I haven’t had more than two or three-night sleep in a row, then 2 or 3 broken nights due to pain, which is causing loads of health issues and is a huge impact on my life. During the day, I am now nearly always in discomfort at best to true pain that breaks through all the pain control medications that I take for my PRMS. On days when the pain is bad I also spend much of the day feeling nauseous and I once again taking Metoclopramide most days at some point. Although I have never had success, I still always try to use relaxation techniques to realise the pressure and spasm, but when the pain at its worst, I have in the past few months been taking more of my 10mg Morphine booster pills, frequently they haven’t been enough and I am left still in a lot of pain. I am aware that Morphine along with my other drugs will be playing some part in the constipation, but life without them would be unbearable. The combination of the pressure from my guts and diaphragm spasms is now causing pain over my kidneys and something is without a doubt interfering with my ability to empty my bladder or hold onto its contents at times. This too is an issue that I have had in the past, but it had settled for quite a while, now it is becoming increasingly annoying to say the least.

It appears that the nerves that move food through my system are not working correctly, which my GP is in total agreement with, I believe that there are also areas that go into spasm meaning even when there is pressure from behind to shift the stools they can go nowhere due to the spasm ahead. Which is why laxatives have more success in causing me pain rather than making my bowels empty. Once the stools actually make it to my lower bowel, they normally leave me with no problem, it is getting them that far through me that is the real issue. I have tried suppositories as well as laxatives, but they come with two huge issues, firstly getting them into me, frequently, I simply can’t reach, add in my poor dexterity and the whole process is highly frustrating as well as difficult. The second is the painful one, suppositories trigger spasm that run from my rectum to my vulva, it is like someone grabbing me with pliers, gripping tightly and twisting. The pain also goes deep inside and I can’t break it in any way.

I am now more a grazer more than eater, but I am careful that the majority of what I eat contains fiber, which not being a meat eater is easy and that I drink at least 2 liters of liquid every day. I am also careful that everything is caffeine free. Even with all the care I take, even small quantities of liquid can be enough to turn a quite spell into discomfort or worse, as in the last 4 weeks my actual stomach seems to have joined in. There is no guarantee ever as to what I can eat or drink at any given time of day. Almost everything just increases my discomfort, but I do eat enough to more than just keep me alive. My mobility is poor, something I can do nothing about, but I still try to move around as much as I can within the house, even when sitting I do my best to move my upper body around in the hope that the changing position helps with letting things move inside. Even when I sleep, I know that I move very little and spend the entire time night or day flat on my back as I can no longer turn myself, not even onto my side by myself.

My average day is now spent in a mix of pain and discomfort from my pelvic level right up to my throat, as each spasm seem to trigger others, there is no relief, even after going to the loo if I am luck I might get about half an hours peace before it starts all over again as the contents of my gut move forward to replace what has gone. Over the last 4 months, it is clearly getting worse and worse, I am at a total lose as to what to do to relieve it.

Fingers crossed, when I write tomorrow I will have some news as to what happens next, I do have a horrid feeling that it is going to start with more tests, but I don’t have the slightest idea what they can do that hasn’t already been done and trust me, I will be fighting the whole idea of another endoscope as I can’t see how it will help spot nerves that aren’t working. It isn’t the endoscope itself that I have a dislike to, it’s not comfortable, but not as bad as you might think, it the two days before of not eating then drinking the most disgusting substance known to man. I have never once managed to drink it all and I don’t know how anyone could. Until tomorrow then……

Read my blog from 2 years ago today – 19/05/13 – Happily facing mortality

Adam managed to get a few hours overtime yesterday, so I had an extra day to myself as he went in to pull records for Mondays clinics, it seems that the NHS are just as bad as many companies are at managing the number of staff on holiday, but still having enough to do the work should anyone go ill. I hate to blow my own trumpet, but I had that one beat…..

Morse code anyone?

I was lying there wishing with all my heart that I had paid attention to those stupid things they tried to teach us when I was a girl guide, not once since then had I even thought about understanding Morse code, but last night, I really wished I had. I have put up with Tinnitus for years, living with the wildest mix of sounds that anyone could imagine, from road drills to high pitched squeals and on through white noise and blue bottles living in my head, but as far as I can remember last night was the first time I had found myself listening to Morse code. It was identical to what you would expect to hear on an old black and white cowboy or war movie, distinct dots and dashes that sound totally random yet you know mean something. I am sure if I did understand, what I would have translated would have been nothing more than total jibberish but it was there and so convincing that I was angry for wasting the one opportunity I ever had of learning it. Recently, I have developed a new habit, I’m not sure if it is a good or a bad one, but what it is, is an interesting one. Anytime I find myself locked on to some symptom or another, I now go straight to Google and type in “MS….” followed by whatever it is, I used to do it years ago only to draw a total blank after blank, building up not the knowledge I was seeking but just more frustration at a so-called information highway that told me nothing.

When I was first diagnosed, in fact, to be totally honest for several years before that, I had been trawling the net looking for answers and very rarely finding anything. The sites I found about MS in those days were totally sparse as to what they had to say, I think there was a general code that medical information was kept to the totally provable and totally clear cut, which, of course, meant that subjects like MS and Fibro were all too often just a footnote. I already was overly aware of the main symptoms, but I was searching for the reason for all the other things that were happening to my body and I was finding no help with anywhere. I became so convinced by what I read that the other symptoms I was experiencing couldn’t be anything to do with the already known conditions, that I went back to trying to find out what else might be happening. I held tightly to the fact that my GP had said to me at one point, “not everything is down to your MS.”, what I forgot to hold onto was his other statement, “I have never had a patient with MS before, so we will be learning together.” Over the past 14 years, the internet has totally changed and the information out there now is amazing. I remember writing a post about the horrid nausea that I had been suffering with for years and I suddenly started getting messages on Twitter telling me that it was very much part of my PRMS. I had undergone treatments so server that I even landed up on a gastric nasal tube because no one could work out why I couldn’t eat without wanting to throw up, there it was, in black and white, nausea is part of MS and I had been put through hell for no reason. Not the treatment, that was needed, but by once again being made to feel like I was a liar and for some odd reason I was making the whole thing up, I knew I wasn’t, but the doctors didn’t seem to. I was so surprised by what I found that I started to check other things and yes they too could quite easily be down to my PRMS as well, it quickly became a new part of my life that with each symptom I wasn’t sure about, I checked it online and more and more slotted into place.

For years now I have been blaming myself for my Tinnitus, all those years working as a DJ and spend more time than was good for me to around live bands, latterly loads of Thrash and Death Metal ones, well it’s bound to have an effect and Tinnitus seemed like a fair swap. Something triggered me to just check this one too, to see if there were any links there at all or if my conclusions were a 100% correct, I was shocked to find that yet again, this is another thing that could be caused my PRMS. I still think that the likely hood is that my working as a DJ is the most likely explanation, yet here I am again looking at something that in the past I would never have had anyone tell me might have two possibilities or even an explanation at all. To date, I have always been overcareful when it comes to what I find online for a lot of reasons. I honestly believe that self-diagnosis is a dangerous thing and a road to be avoided at all times, but I am also realising that once you have a diagnosed condition that we still have to take the initiative and stay on top of what information is available, regardless how many doctors roll their eyes or snigger when you mention that you have read something online. The more I am finding out, from both the official sites about MS and through discussion boards the more I feel I have been treated really quite badly at times, simply because of the lack of knowledge from people within the NHS who don’t specialise in treatment of MS. If my doctor had known that nausea was part of my condition, I would never have been sent to gastro when I found eating almost impossible and when gastro couldn’t figure it out, I wouldn’t have been sent to see a shrink, who surprise, surprise, couldn’t work it out either. It was me who eventually found the fix by accident, remove the excess stress, my PRMS settled down a little and I was once again able to eat again, if only little and often.

It is hard to know just how much of our health we have to investigate for ourselves and how much we have to leave in the hands of our doctors. I know the doctors would prefer that we just sat back and left it to them, but no doctor can know everything and I am totally sure that they all too often find themselves facing a patient who is as far out of their comfort zone as any knowledge of Morse code could have translated what I was listening to last night. I for one am now going to be much bolder when sitting there describing what is happening to me and not shy away from explaining what I have discovered, what I need to do more though is not tell them how I know and just make it sound as though it is something everyone with PRMS knows. Maybe bravado even has a place in the consulting room as much as it does in any other situation awkward situation we find ourselves in.

Read my blog from 2 years ago today – 19/04/13 – Changing your mind >

That silly headache is still around, it’s intensity has reduced but it isn’t happy to leave yet, this dull ache is actually in itself draining, it makes you want to curl up and do nothing although that isn’t going to help at all. There are many days that I feel that way, that just lying there curled up in the dark, warm and safe

Life through closed eyes

I am currently walking around with a plaster on each foot, the podiatrist came to see me yesterday. It is partly my fault, as she did call me about four weeks ago wanting to come out and cut my nails for me, so it had been five months since they were last done. Part of the reason that someone has to come in to cut them for me is that due to a birth defect my toes are curled and all my nails including my big one, now have nails that curl and grow into the skin. When I was able to reach them and see them clearly, well I had learned how to deal with them, but now, well even the podiatrist agrees that it is a bad idea to have Adam cut them. The extra week meant that they were in a greater mess than normal, even though Adam had had a go at them with a nail file a couple of weeks ago and she had to take a scalpel to two of them to cut and lift the nail out, hence the plasters. It was my right foot that needed the most work, but as always with my body, it is my left that is now the painful one, there really is some warped thing going on in my body as even when the facts say the opposite, it is my left side that suffers the most. This morning, I have found yet another reason not to walk around too much, as the toe on my left foot is crying out ever time it touches the floor, like a little electric shock. Some things don’t change I suppose, it is still the smallest, stupidest little things that cause us bother, I never once thought that PRMS would leave me unable to do something as small as cutting my nails, nor that it would lead to them being attacked by a scalpel. It really is the everyday things, the things that all of us do all our lives without a second thought, that makes our lives difficult once our own abilities have been diminished and it isn’t our illness that makes us feel disabled, but the million and one things that just everyday life require.

I know that the first thing I worried about after diagnosis wasn’t how long I could cook a meal for, or cut my toenails for, it was how long I could work for, I really didn’t understand just how unimportant work really was on the scale of things that life held in the future for me. I doubt anyone ever thinks about how long they can make a cup of coffee for, or carry that cup from the kitchen to the living room without spilling it. We are all so blinkered by the major things that the minor ones never enter our heads and no one ever sits us down and explains the full impact of what our health is going to do to us. It is almost as though everyone assumes that we will or have worked all these things out for ourselves, but I don’t think any of our minds work that way, we are so worried about our financial positions and staying part of the able-bodied world for as long as possible, that the truths of disability never get the slightest look in. I do remember wondering about how long I would be able to walk for, but I never once sat and thought about the reality of life in a wheelchair and how most of the outside world and much of the inside, was going to become an no go area for me. I never thought about being housebound, I do though remember thinking about becoming bedbound, but as where I might be a for a few months at the most before I died. Somehow in my head all the in-between stages didn’t exist and I very much doubt are in any of the heads of those people who have been diagnosed with something similar in the past few years.

It isn’t until the day you try to do something and find that it isn’t as easy as it was the day before, that you suddenly start to think about losing that ability. I remember in the weeks before I lost my left arm, I kept finding myself unable to do silly little things, that the weight of something would suddenly increase and I would drop it. In fact, the day I really noticed it and started to think, was when we were putting up the Christmas tree. I remember struggling with everything and getting more and more frustrated with it and with Adam, as I had to tell him over and over that my arm wasn’t able to do this or that, as he moved at his normal pass rather than jumping at lightening speed to either catch or take from me whatever was in danger. Hanging the decorations on the tree was a total nightmare as it is very much a two-handed job and I had hundreds of tiny breakable ornaments to hang, plus thousands of decorations for the rest of the house other than the trees and no I am not exaggerating, we do have thousands of Christmas decorations. Over that month, things remained at about that level, with odd things happening and problems that kept reoccurring, even then I still brushed it aside and kept telling myself that I couldn’t possible lose my hand, hands don’t just die suddenly. Even then, I never once thought that in the first week of January I was going to wake up one day and find it totally dead, nor that it was going to take a year to get it back to a useable level. Quite often, even when things are staring us in the face waving red flags and shouting, we don’t see it until it does it’s worst and we have no choice but to accept it.

I don’t know if it is willful ignorance or just the normal simple ignorance of the able-bodied of what life as a disabled person really means in its finest detail, but I do know that none of us have the slightest idea of what lies ahead of us. I used to think that someone should write a handbook on becoming disabled slowly, now, well I guess the truth is that few of us would read it and those that did, would simply dismiss it as impossible to happen to them. It doesn’t matter how many peoples lives I read about or I have told to me, I still find myself somehow unable to accept that most of the worst things I come across could happen to me, just as I am sure many who read my blog can’t see the same things I write about happening to them. My arm did teach me one thing, I no longer don’t pay any attention to the small things I feel or see, I try hard to make mental notes, not always the most reliable way of documenting anything, but I try. Should something happen again, well I can see if it was a one-off or a real change. My list of one-offs is huge and is kept company by lists of two-offs, three-offs, four-offs and so on, I still have to workout at exactly what point it falls off the lists and becomes part of life.

Progressive illnesses aren’t always hard to live with because of the things that you have get worse, but because new things keep appearing, one after another. You keep telling yourself that you are fine, that surely nothing else new can happen now, but it does and what we know, has nothing to do with how we handle it, that has everything to do with who we are and how we handled all the things before. It has taken me a long time to understand why my neuro wanted to see me every year, I used to think that it was because I was in this small 5% of MS patients with PRMS, now I realise it was because although he wasn’t saying it, he could actually see my future. I didn’t know until the last few years just how rare some of my symptoms were, as I was already then displaying several of the rarer ones. From everything I can find to read, I now seem to have them all, but if he had told me that then, I don’t know what I would have done, possibly attended his surgery for a couple more year of nods and smiles as he ticked off all the rest. From what I can see, well my path is now set and with luck the new things will be fewer and further apart, as long as they don’t find some other condition lurking that I don’t already know about. I do know though that there are still a million things that I can do right now, that I won’t be doing in the future and I am sure that some of them, well some will be totally unexpected, as no matter how much I read or listen, simply because I am as human, and like it or not, humans do a very good imitation of being an ostrich with their head in the sand.

Read my blog from 2 years ago today – 9/04/13 – An act or a lie >

I am a bit drained at this second, Jake phoned for his weekly check on my and his calls are getting longer, the longer he is not working. I love the guy, but it really is just too much right now. I am managing to put on that gloss, the “I’m OK” cover, but it is getting harder and harder. Despite everything…..

It never ends

I can’t believe that Thursday is here already, somehow everyday this week seems to have been cluttered and so busy that I haven’t felt as though I have rested at all from waking to eventually sleeping for the night. Yes I have been having my naps, but even then I don’t seem to have brought me the relaxation that I feel I really need, somehow despite of the majority of every 24 hour period has been spent asleep, as usual, I feel as though I haven’t slept at all.

I had never really appreciated the value of sleep, as I have written many times, sleep wasn’t something I really bothered with or needed, so when I first found myself tired and unable to stay awake nearly all of the time, it was a real shock. It was always one of the things about my early flares that stood out to me and told me there was something wrong, tired wasn’t something that I as a person did, even as the mother of a two small children. Looking back I know that it wasn’t something I pushed hard enough with my doctors over those years, just saying I was tired without quantifying that normality was just 4 hours and outside that I never stopped, as I was doing what what was expected of me. I cooked, cleaned, made our clothes, wine and bear, not from kits, gardened, knitted, did all the DIY and kept adding more and more skills every year, whilst trying to bring up my family, alone most of the time, being tired was a huge problem. I still remember the first time I was crippled by tiredness and crippling was exactly what it was. I found myself lying on my bed in tears, my body didn’t have anything left to give, I honestly didn’t know how I was going to deal with my 5 month old daughter who was sat in the next room, inches from the TV, the one place I knew she was safe. I had only been up for 3 hours and I had struggled through every one of them, there were still all the nappies and other laundry to be done with no automatic washing machine, plus I hadn’t even started on the housework. Going to the doctor with my daughter and pregnant, saying I was so tired I was crying, didn’t exactly get much sympathy, I was basically dismissed, just told to slow down and rest as what did I really expect, it was the start of a pattern that went on through my life.

I know everyone is different but for me it is the one constant in my life, every flare I have ever had, included being so tired that everything was an effort. I grew used to those spells when the world was this alien place I had to deal with, where there were not enough places to sit and rest or enough people who would offer assistance when I was clearly struggling to do something. I learned to push on, to cover it up, to not let those moments where I let myself down as unable to deal, to visible or to happen too often. By the time I was in my 30’s I had convinced myself that I was a wimp and the only thing I could do was to stand tall and act like everyone else did, they had to be feeling just as I did as the doctors said there was nothing wrong with me, if they could cope, then so could I. Believe me it is so hard to function like the rest of the world when every muscle is screaming that they can’t move once more, or that if you let yourself stop for a second, you will never move again. I lost count of the times that I would reach home with tears flooding down my face, or how often I climbed the stairs to my various homes, on my hands and knees, stopping at almost step to rest. Being a DJ was a blessing, night time work for 4 to 7 hours, perfect, plenty of time to sleep when I needed it, or live to the full when I didn’t and I managed for 7 years perfectly, but age meant I had to find a career that didn’t care if I aged and I did.

Sales was at first great, I could earn what I did as a DJ and still part time hours, but 2 years in and I was hit by my worst and my final big flare before life went mad. For the first time I had to stop working, I was off for 2 months, my doctor said it was a virus, gave me painkillers and told me to rest, I knew he was wrong, but when things are at there worst the last thing you are able to do is argue. Don’t get me wrong, I tried, but when your brain is as tired as your body is, getting your point across is almost impossible. Tired isn’t just a physical thing, tired is a life thing, you name it, what ever function you want to use, is tired. You can’t think, you can’t talk, you can’t move, nothing is working as it should even your eyesight fells tired. Add in all the other symptoms and life is a growing hell, one that for me was always spent alone, so I know when others tell me they don’t have and “Adam”, just what they mean, I didn’t always have an “Adam” either. There is only one thing I would say about if having someone with you helps when you are ill or not, is it depends on who that person is, trust me some can actually make it worse. What I have learned is, if you don’t have an “Adam”, you are better off alone.

Tiredness brought on by health isn’t the type of tired that you can climb into bed and sleep off, you go to bed tired and you wake up tired. Your body may be screaming in a language you think you understand, but we don’t. This type of tired is so deep, so complete and so devastating that there is no escape from it and even worse there is no way of bringing it to an end. For about three years now I have slept between 11 and 13 hours every single day, tired or not, as I have a new definition or tired. Tired is life, every day life, I am never not tired, but there is a step up, it’s a huge step up, it when your very soul is tired and you feel like you have nothing left to give. You crave sleep, all you want is to go to bed and sleep, not for an hour or ever 12 or 24 of them, you just want to sleep forever. Note, I am not talking about dying here, I am talking about sleeping until your body actually wakes because it is awake, not because it’s time to get up, but to achieve that feels as though it will take forever. The sad thing is that life has taught me the same hard lesson over and over, and not just about being tired, it doesn’t work that way. If life worked on that simple lines well life would be easy, you can’t sleep this tired off, no matter how hard I try, or how long I stay in bed, I am always tired.

My RRMS turned into PRMS 13 years ago, I don’t think that I have had a single day since that I haven’t been tired. Tired is now my life, all that ever changes is intensity. I may have drawn the short straw when it comes to my health, but I think I am still holding onto and pulling the straw that brought my husband to me, he knows and sees and can read, just how tired I am, he can’t take it away, but he gives me a reason to wake each day, no matter how tired I am.

Please read my blog from 2 years ago today – 27/11/12 – Crossing a milestone

After yesterdays conversation with the bank I had to make another call and that was to the Doctors about the pain control issue that might occur on Thursday. My own doctor is on holiday so I had to talk to the other partner, I was ready for a struggle……