The doctor lottery

I seem to be just jogging along the same path every day at the moment, inside all I want to do is sleep, but when I am lying down I find I can lie there without sleep appearing. Yesterday afternoon I lay in bed during the afternoon just aware of once again how dead my arms and legs where and how incredibly tired I felt. I would have sworn that I didn’t sleep at all, but the clock told a very different story, I had slept for well over an hour and all I had to show for it were limbs that felt of no use and eyes that just didn’t want to have anything to do with daylight. My eyes have been more and more sensitive to it over the last months, I didn’t mention that the other day when I was writing about the effect on my eyes that my health had had, I don’t know why but I didn’t. It is the same every time I leave the bedroom, which is the darkest room in the house although as I have said before not totally dark. Coming into the living room is painful, to say the least, I can screw up my eyes as much as I want, but the sun is still getting in and still makes me want to just head back out and to stay where it is dark.

Throughout the winter, I keep the curtains shut, not due to the light but to keep the heat in, this year I am finding that I am still sitting in almost the dark even though it is clearly summer and the heat is outside. Adam now opens the curtains at the back of the house every morning, it is always darker round there as the sun never really comes in through those windows, the huge trees help to block any bounced light of other buildings, but on their own bounce a nice soft light bright enough to work in the kitchen, but soft enough to not need sunglasses. In the living room, although the curtains are open, the blinds are only open a quarter of the way, so that the light levels remain low, even when the sun is directly on the windows. With a room filled with crystal and two cream settees, when the light comes in it bounces painfully of everything. I don’t remember ever finding it as hard as it is this year to deal with light, all I know is that without even the slightest doubt, that waking up and moving slowly on otherwise dead limbs, to then be assaulted visually is one thing just too much to deal with.

My muscles are still complaining big style, I know I thought that I had found the answer with my meds, but it doesn’t seem to have been it at all, just coincidence. It was really nice to have a break from it for a couple of days, I just wish that the break could have been that bit longer, in fact, it has been a dream that I have had for a long time, that my body would just give me a break from it all. It’s 13 years since my MS turned progressive, 13 years since I last felt like a normal person and was able to lead a normal life, from the day that I came home and told Adam that I was going to the doctors as I just couldn’t take any more of it and I wasn’t going to be fobbed off by the normal excuses. He didn’t know about any of it, as I had become so used to living with it, I doubt anyone would have known back then, I hadn’t had a flare since several months before I met him and that was explained by my doctor as a virus. I had become convinced that I was just a wimp and everyone felt just as I did, it was just me that couldn’t manage to live with it, but I couldn’t accept that and I was determined to get the answers I now have. I have often wondered how long it would have taken if I hadn’t been so determined if I hadn’t demanded that I had had enough and I wanted it examined again because I knew there was something wrong. If I had just gone to the doctor and complained about all the normal things, would I have been told yet again it was a virus, or would I have been sent home with antidepressants, their other favourite excuse that never really fitted. I suppose the course of my illness would have been exactly the same, that I would have just been struggling for longer, not knowing what the reason was.

There are theories out there that a diagnosis is the worst thing we can ever have as that diagnosis gives up permission to be ill, rather than to get on with life. I actually remember one nurse warning me that that was the way some doctors thought and that they would see the fact I had been trying for years to get a diagnosis, would work against me and getting one was lucky. Some would also believe that there hadn’t actually been anything wrong with me at all prior to that point, that my history was one of a hypochondriac. She warned me as she had come across it many times and she told me not to dwell on the past at all, when it came to talking to a doctor, to just talk about what was happening at that moment only. Strangely I actually think she was talking the truth, the more I look at all my interactions with doctors before and since my diagnosis, I can see clearly some doctors who actually fall into those camps. Doctors who are totally dismissive towards my MS and any other condition that I have been diagnosed with, unless it can be seen in an x-ray or removed with a knife. I have thought often of mentioning it in here, but I have shied away from doing so as it all sounds just that bit odd. Life though has shown me that odd is often just what life is and I think it is something that should be in here, just in case someone is not getting the responses they expect, or where hoping for. It may well be that there is something wrong not just with you, but also your doctor.

In the UK we are always reluctant to make a fuss, to do anything other than treat a doctor with a huge dose of respect, bowing to their pedestal and blaming ourselves when we come home upset and no further on. I did it for many many years, even to the doctor I am with now at first, but he is the doctor who I was forceful with for the first time in my life about my health and he was then the doctor who could see that I had truly had enough of being told there is nothing wrong and sent me to everywhere he thought might be relevant. If your doctor seems to be not listening or is brushing you off rather than making you well, you have the right to a second opinion, something I never asked for. I guess the best example I can give you is the fact that it was an ENT specialist who diagnosed my MS, before sending me on to see a Neuro who confirmed it. I was sent to ENT due to my balance problems, I was lucky I had found a doctor who agreed there was something going on and he wanted to know what it was, as much as I did. One MRI scan later and we had the answer, if I had seen a different doctor, I would probably have been sent home with the usual, we can’t find anything wrong. Diagnosis isn’t just about the right tests, it’s very much about the right doctor, find them and you will also find out the truth about all the others you have seen over the years.


Please read my blog from 2 years ago today – 30/06/12 – Changing Values

After the rain of the past few days, it is really nice to look up from my computer screen and see the sun bouncing off the buildings across the road. at this time of day, it is still lowish in the sky and the warmth outside hasn’t started to build yet, so only one window open for just now. Even when you are caught inside the weather still somehow seems important, not because you want to know what to…..

Relax or maybe not

They say you shouldn’t speak too soon, guess what? I did! I published my post yesterday and within an hour I was once more struggling to keep going, my arms and legs were once more tight throughout and feeling as they were going to explode, in fact, I was feeling as though I was going to explode. I pushed through until just after 2pm and went to bed as I couldn’t even manage to click on one more item on a screen, I had to stop that very second and headed to my bed. Just like all last week, it took me a while to manage to relax, my arms somehow relaxed first and as I was working on the rest of me I became aware that they felt like lead, totally dead and useless. I didn’t move them I was to scared to as I had to get some sleep so I lay there, arms dead and legs slowly drifting into a relaxed state, but totally aware of the fact that I was still wound up and so tired that I no matter what my body did after, I had no choice but to give in and sleep. How long I slept I don’t know, but in all, I was in bed for 2 hours and when I woke my arms were still dead, well at least that was how they felt, I could move them and use them to pull on my clothes, but they felt dead, beyond fatigue. Fatigue is a muscular thing and yes all of the muscles were fatigued, but it was almost as though my nerves had found a way of joining in, they were sluggish in their actions and the only sensation they were returning was one of an amplified nothing. When I pinched myself I could feel it, but the nothing was bigger and more over powering than the pain, not like a limb that has lost circulations this was different, some things were similar, but there was more that was different to make it stand out above anything else. I have felt this a lot in the last few weeks, as you can see describing it is difficult as in many ways it is like trying to describe silence to someone who has never heard anything other than one sound. There is a known absence of life, even though there is function and feeling, both my arms and legs have all been falling into this state lately once I have been in bed for a while and it takes time for them to come back to anywhere near normal.

This morning when I got up I timed just how long it took for my arms and legs to feel like they would be of any use to anyone, it took about 15 minutes. I had all the time been using them, but they were acting without any of the feelings we usually get when we move a limb. It really hard to explain this in a way that doesn’t sound verging on the insane, but I could, for example, feel the keys on the keyboard as I touched them, but the sensations that goes with that action, the feelings we have that tell us our figures are moving, without having to look at them to be sure, were missing. Trust me it is as bizarre to live through as it sounds, by now you would think I would be used to all the screwy things that my body does, but it doesn’t matter how long you live with things like this, they still have the power to astound, confuse and even scare you. I learnt along time ago to not try and explain them vocally to others, over the years I got kind of fed up with people looking at me as though I was a lunatic, at least when I write them down, I can reread, rewrite and rethink, until it sounds about right and if I get it wrong, well I can’t see your face or have to deal once more with someone who is confused, or worse still is ridiculing me.

I have for years now used a relaxation technique that I was taught back in the 80’s, I lie there and I concentrate on each section of my body, bit by bit, I start with my toes and I consciously relax the muscles and tell them then to sleep, sending the order down through my body to the muscles I am working on, once relaxed I move upwards to the next section. Normally I am asleep by the time I reach my arms, often a lot sooner, I don’t know if I felt it from the start or if it is something I have somehow invented since, but when I send the command to go to sleep, I actually feel it travelling through me to my chosen destination, like a wave of sleep energy. I mention it because firstly it works really well and I would recommend that others try it, but also because it is that wave feeling, the feeling of it being a wave of energy, but not sent by me, that I feel when my arms and legs are shutting down on their own. I realised last night, I just hadn’t put the two together before, on those occasions when my body drains of energy and I simply can’t do anything else, it is the exact same sensation, expect I don’t pull the plug, it jumps out by itself. I have to say that given a choice between muscles that want to explode and muscles that just go to sleep on me, I would choose them going to sleep anytime.

I wish I understood what triggers all these sensations and actions, sometimes I know it is stress or something else that has happened, but for the most, I just have to get on with them. What I do now know about the muscle tightening episodes is they all start the same way, I thought I had it worked out in the middle of last week, but it was also the point when I raised my medications and they stopped for a few days, so yes I am wondering about my meds again, but because it happened yesterday I can say totally without a doubt they start in my right leg. In fact, I can be even more precise about it, they start in the thigh muscle of my right leg like it is at this very second the muscles just start to tighten and it spreads through me from there. No matter how many times I have tried to take a break it at this point, I have always failed. Not even using the relaxation technique works unless I go and lie down first, I have tired over and over to make it work when I am sitting up, but I always fail, which I am guessing is because my spine isn’t relaxed unless I am in bed.

With everything that is happening right now I am going to make one more guess, I think that there is an answer and that it is a simple one, I have new lesions forming on my spine. The never ending diaphragm spasm, or hug, it’s occasional partners in my upper ribcage and lower abdomen, the pains in my side, the increase in bowel and bladder problems, the continual tightening of muscles and a few other smaller things, all point to it. My progression in the last year has been marked and doesn’t seem to be slowing down, I don’t need a neuro to tell me this because it has been a long time coming and not unexpected in any way. For me, it is more of what next that bothers me, not why it has already done what it has and that is all they can ever tell you.


Please read my blog from 2 years ago today – 29/06/12 – How are you? 

It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and…..

Changing the world

The start of another weekend and I don’t think I have managed yet to type one complete word without hitting at least one wrong key and having to correct it. The stupid thing is, I don’t actually feel that bad this morning, I am actually so far today the closest I have felt to being myself for a long time. I woke early again today, well when I say early I mean I woke at 6:30, the bathroom curtain was open again and the light had got to me. I lay there trying to go back to sleep but with no direction I could direct my face in where there wasn’t light, I just couldn’t drop off again. I lay there until just after 7 am and then gave up, there is a point where I just start to get wound up by the fact I can’t sleep and I hit it, I also know if I stay in bed past that, I start to get a headache, so getting up is always preferable. I said yesterday that I thought I was through the worst of it, well I can say without a doubt, that I was right. This morning I am still getting short bursts of it, but when I take a few seconds to just stay still and relax, it passes and I can get on with what has to be done again. You don’t know just how glad I am to be writing that, as I couldn’t help feeling that it was going to be around for a lot longer than that. The only thing new is that the muscles in my arms that were driving me mad by tightening, are now having spells of numbness, it started last night and is still happening, but numb I can live with, tight and impossible to use, well I don’t know who could.

I really hate this time of year, if it wasn’t bad enough that the house is filled with unwanted light and heat, the TV is full of unwanted programs as well. Once again the annual problem of programs being shifted around to allow for both tennis and football, now Glastonbury has got in on the act as well. I have to say that I am not as mad about it as usual as there is now catch up TV, so when they shift all the programs I want to watch out past my bedtime, I can at least still watch them the next day. The only reason I am really mentioning this is because it is yet another sign that most people don’t give the slightest thought to those who have no choice about the time they have to go to bed and their evenings being ruined. I honestly think it should be the other way around, shift the interlopers to an obscure channel and keep the main ones doing what they do well. So OK it is a small and on the scale of it not exactly life-stopping event, but when you add up all the small things that just don’t work for those of us who aren’t fit and healthy, the world gets rather cluttered. Looking back over the years when my health was racing downwards the truth of life outside meant that in most regards I was actually housebound from the day I landed up with a walking stick, and totally so, other than work, from the day I found myself sat in a wheelchair. I know to those who are able-bodied that it may look and feel as though there are facilities for the disabled everywhere these days, but the truth of those that are there, is most look accessible, but aren’t. I lost count of the number of so-called accessible buildings I have gone to, to find once there, that either the ramps are so steep that if you don’t have an electric chair or someone to push you, there is no access, worst of all most were built after the law was in place to ensure everyone could use new buildings.

At the minute in the UK, there is a huge drive on for people to learn how to assist people with dementia, the way it is being heralded would make you think that dementia is something new and that the world is making a huge effort to adjust to it. I haven’t been diagnosed with dementia, but the damage I have to my brain has a lot of similarities, but I know without a doubt, if I went to one of the banks, or shop chains that now have stickers on their doors displaying that they are “dementia friendly”, well as long as the right people are working at that time, I would first have to explain what is wrong to get the same assistance. No one can see brain damage or dementia and trust me, the last thing I would want to do is walk up to a complete stranger and have to explain what was wrong with me. I don’t know what the answer is to making life accessible to people with invisible illnesses, but what I do know is none of us want to have to tell everyone that we have a problem and none of us want to walk around with a badge on, or anything similar, so that others are simply friendly and helpful to us. If anyone is going to be able to live a “normal life”, once diagnosed with any invisible condition, it isn’t through individual conditions being used as a way of getting companies to act on what should be something everyone in every service industry should be taught as part of their standard training.

I know that everything has to start somewhere and in this country, well this might be a start, but I am not going to hold my breath. Whatever happens, it is unlikely to affect me directly, but there are millions of us, not just in the UK, who need the help of others to just do what most do without even a thought. We already have “Disability rights”, this isn’t about rights, this is about people acting compassionately to those not as able as themselves, regardless what it is that makes them less capable. Shifting the entirety of society might be rather a tall order, but it’s what’s required, somehow, be it through courses or general education from school onwards, everyone needs to learn compassion and patience with everyone else, then maybe the disabled might stand a chance out there.

Please read my blog from 2 years ago today – 28/06/12 – Minority to Majority

For one just hour look at the world upside down, a strange request possibly, let me explain, just for today don’t just do things think about what you are doing. Take all the things you find simple throughout your day, those simple tasks like getting dressed making a cup of coffee, as you do each of these things try and do them with just one hand, or without bending a knee, or even something as small as not being……

Seeing it clearly

I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other than my right shoulder and underarm, they still are driving my fractionally mad, but I am not complaining, after the last few days, I have nothing to complain about. Pushing my dose of Gabapentin seems to have done the trick, I am going to keep it at the higher level today and maybe tomorrow then see what happens, it doesn’t scare me to bring the dose down as I have the answer, so I can test to my hearts content. Even though things are that bit better I am no longer trying to fool myself that things aren’t getting worse and that I am not in the midst of a flare. I have come to the conclusion that I will never just accept what is happening and that to the day I die, I will still be questioning what is happening to me without the slightest chance of doing what would be logical, to accept it and treat it as such.

I was pleased today to find in the comments to my blog a person who made me feel just that little less alone in all of this. I get so much support that is beyond words when it comes to making me feel better and giving me strength to go on, but there at times and topics where I am screaming inside, “Someone out there must know what I am talking about, someone has to be going through this too”, but there is no response, no feedback and I continue alone. Today though at last one other person on this planet said they to find themselves with seeping sores that they don’t know are there because they can’t feel them, that they just appear where skin touches skin and dealing with them is hard and horrid. Thank you and thank you again! I know I make things worse for myself when it come to sores like that as I truly don’t want to ask for the help I need from Adam when it comes to getting dry after a shower. Adam hasn’t seen me naked now for about 9 years and I am so embarrassed by the way my body is, that I don’t want him to see me, I have instead worked on ways of making sure I am as dry as I can be. By the time I have managed to undress and wash myself, I am exhausted, drying myself can be some days a truly huge problem. Just now it isn’t too hard as the weather is good and the house is warm, so I simply pat myself down as well as I can and use kitchen towel in the areas I know sores can appear, letting them blot the moisture of me, once as dry as I can get, I then let the air dry the rest of me, before I try to get dressed. I know because he has offered over and over again to help me, that all I would have to do is ask and Adam would be there, but I can’t get past my stupid embarrassment. His help wouldn’t be the full answer, though, just as in the comment, I too have a problem that sweat will build where skin meets skin and that alone can cause the skin to break down, which when you can’t feel it, well is a problem, one I haven’t found the answer to yet.

Just a week ago I was stressing myself out about the visit from the MS Support worker, now I guess with all that has been happening, I have something to talk to him about. On the other hand, though I can’t help wondering just how much of this happened because I was stressed out, one of those questions that I doubt there is a way of actually answering, as who really knows. The more I think about it though I now know that this all started prior the letter but skyrocketed after it. I am thinking of asking them not to write to me in future, but instead to just phone me on the day they are coming that way I don’t have this long time to twist myself into a state, hopefully as they deal with just people with MS they will understand my situation, so why do I think they will find it all very strange, maybe because that is the normal reaction I get from everyone else.

There is one other thing that I have found myself doing more and more, wearing my glasses here at my PC. I had a pair made just for this very use just over a year ago, but when they arrived I didn’t really find them a great help, so they have just sat on my desk doing nothing but gathering dust. I don’t really know what made me reach for them, but I think it was because I was feeling somewhat nauseous, something else I haven’t really suffered from for a long while. I used to find that I couldn’t deal with motion, things like sitting in the taxi and seeing things passing me by, or just sitting in my wheelchair being pushed, was enough to make me feel sick. A couple of weeks ago just moving my cursor or scrolling up and down a page was having the same effect, I had it explained to me while ago and if my memory serves me correctly, it had something to do with the fact that my vision being screwed up in my right eye due to macular degeneration, something they found when doing all the test for my MS. Because of all the pain I have been in recently due to the muscles tightening in my legs, I had played around to find a position at my desk that helped a little, but the downside is that I now see the TV out of the side of my right eye, the TV is giving me motion sickness, add in the what is happening on my PC screen and there is the reason for my nausea. I put my glasses on as although they don’t help with the TV movement, they do sharpen up the PC screen and means I reduce the fuzziness. Unfortunately, they don’t help with the left eye at all, a victim of MS. I can only guess that somewhere in my brain I was working this all out without real conscious thought, reaching for my glasses just happened and I am glad that it did.

Eyesight is something most of us take for granted, I had known for a long time there was something wrong with my right eye but normal eye tests didn’t find the issue. It was the more in depth test at the hospital that showed up the macular degeneration, something most people don’t have to deal with until old age, mine is down to my smoking, something most smokers don’t know can happen and once the damage is done, there is nothing that will fix it or even stop it, it will only get worse. It takes screws up your central vision, by firstly developing blind spots, but it also fuzzes out the rest of it. My peripheral vision is clear but it is unnatural to see that way and as things pass from clear to blind to fuzzed and so on, well it’s the same effect as motion sickness, all without moving an inch. My left eye has taken many hits from my MS, the worst about a year before I last left the house, I woke up one day with the plan of going to work to find I couldn’t see clearly at all, in fact if something was further than 6 inches away it was a total fuzz. I worked from home for two days, both of them with my nose almost touching the screen, convinced at first that it would never return to normal. I was as scared as hell, I really thought that was it, that I was never going to see clearly again, but it slowly returned until it was clear enough for me to return to life. MS can make you blind, it isn’t common but it happens, more common is pain in the eye and the loss I just described, optic neuritis is the inflammation of the optic nerve and it is normal for it to only be one eye at a time. I have been lucky so far for it to always repair itself, but with my MS being progressive, I many not be as lucky again.


Please read my blog from 2 years ago today – 27/06/12 – Teaching the young 

Looking outside doesn’t seem to be the best idea today, it is another one of those warm damp days, yesterday evening I turned the TV to BBC one to watch the teatime news, I had turned over a little early and the days coverage of Wimbledon was just coming to an end, so I left it there and returned to what I was doing on my PC. I could hear the sound of Tennis balls, players, and the crowd, but when I looked up…..

Juggling the drugs

I really don’t want to sit here and moan, it’s hard not to when life begins to feel like “Ground Hog Day”, but I have done what I can to explain how things are just now and other than to moan, well I don’t know what more I can say about it. Yes, today is once more a day where I just want to vanish in the hope that when I reappear, life will be closer to something I recognise and want to be part of. There is a small plus, so far today I have stayed out of bed, other than when I woke up there. I once again woke at 5am with the bedroom filled with light, but worse than that I could hear something, something that sounded like some weird creature breathing just beside me. Even in my half-asleep state, I knew that was impossible, but I had to open my eyes fully just to be sure, there was nothing there, just this weird sound. I knew it would stop me sleeping until I tracked it down, so I got up and headed into the hallway to see straight away that Adam forgot to close the curtains in the kitchen and bathroom, plus the bathroom window was also open, so there was the reason for the light. Adam was where I expected him to be on the settee and snoring so deeply that I knew for once he wouldn’t be up and following me around, just in case. One of the problems of having the old fashioned quarter lights above the internal doors is that they don’t just let light into the hall, but they also let light travel further and both ways. I went to the toilet and then into the kitchen with the plan of sitting there to have a cigarette before I closed the doors to cut out some of the light and then head back to bed. Closing the curtains isn’t something I have really been able to do for quite a while now, the weight of the curtains and the height I need to stretch to means that not only is it exhausting, it has also become dangerous. Standing isn’t as simple as it used to be, when your balance is off, so is your ability to do anything that means you aren’t firmly planted on the ground.

I was sat there in the kitchen on my perching stool, making mental notes about asking Adam to be more careful and to close the house up before he lies down on the settee, it is a mistake he makes all the time and has never learnt from. Lying down on the settee for what he intends to be a few minutes before he does something, always means falling asleep and never doing it at all. Suddenly I heard the noise again, I also recognised it straight away now that I was awake, it wasn’t breathing, it was a pigeon cooing in the back garden, even sat there in the kitchen where the windows were shut I could hear it clearly, but it didn’t click until I was heading back to bed why it woke me. Standing in the hallway with the bathroom window open, it was a lot louder than normal, loud enough to go through the closed bedroom door, enough to distort the sound and to make it sound like breathing. With all the doors shut, I climbed back into bed, not convinced that I would sleep again, but determined to at least get some more rest. I didn’t, in fact, lie there for long, sleep soon took over, but a disturbed nights sleep is never as effective as one that just covers the entire night.

I spent yesterday evening once more sat there trying to work on the muscles in my arms and legs, just hoping that I would find the way to release them and to bring some sort of peace. Things had been better since lunch time when I did something that I am going to say right now and very clearly, is something I do not recommend to anyone! One of the drugs I take is Gabapentin, it is an antispasmodic, which for the past couple of years I had without discussion been play around with and discovered that I could cope on a slightly lower dose than that which had been prescribed. To me it is something I have always done, I have this thing about not taking more than I absolutely have to of any drug, for several reasons. Firstly I believe that your body can become used to drugs, which means over time they don’t work as well and secondly, I just don’t think it is wise to fill your body with stuff that isn’t totally 100% necessary. With the increase in the spasms I have been having over the last few months, I had actually put myself back up to the prescribed dose, it helped at first but slowly it felt as though I hadn’t changed the dose at all, but I kept on taking it. Of course, because I haven’t taken the full dose for a while, I have spare tablets just sitting in the cupboard, I also know that I am not on the maximum dose, so what I did was put myself on to it without speaking to anyone. Things improved within the hour, it had taken the worst edge off how I was feeling, so I took the new dose last night and also this morning, the difference is marked. I am still fighting to keep going but I am doing so at a level where I can keep going, I am just below the wanting to explode level. My plan is to stay on this dose for a few days, less if I find I am back to or close to what I call normal, but right now it is needed and it is making life bearable.

I have spent around 10 years now being the one who prescribes for myself, normally I speak to the doctor first, but this time I had the answer here, I didn’t need a new prescription and I was totally sure he would have said try it, he usually does. I am going to see how things go and if I find the higher dose is the only thing that holds me steady than I will call and ask for my prescribed dose to be changed permanently. The relationship I have with my GP is one of the reasons that although his surgery is miles away and I could have changed to a new surgery when we moved here, I stayed just where I was. When you are living with an illness of this sort, there is one thing that makes a huge difference, having a doctor firstly you trust and secondly who trusts you. He knows that I never ask for anything that I don’t really need, that I hate taking things that don’t seem to make a difference and that I will fight on my own to deal with things, meaning when I call him, he knows I really need help. I know without the slightest doubt that if I picked up my phone and asked him for a higher dose of morphine that I would get it, that kind of faith actually means I have one less thing to worry about and one more thing to put down as a huge positive, next to my husband, my doctor is the most important man in my life.

Right now, I am sat here dosed up on everything I have, but I still feel far more negatives than I would like. All I can do other than what I have done is to wait and see what happens, if it is just a phase or if it is something that I have to take further action on. I just keep hoping that the next time I fall asleep it will be the time that I wake, without my skin burning, my muscles feeling like they want to explode and with the true feeling that I can make my way through the day as I have made it through all other days.


Please read my blog from 2 years ago today – 26/06/12 – Normal service restored

I have been told many times in my life that I have a way with words and an ability to empathise with others, probably why I was a successful sales person but more than that it is something I can only explain has come from inside. I wasn’t always aware of it and to be honest, the first clues that these were parts of my personality didn’t show themselves to me until I was 13 and I started at school…..