Through hell and back

I hope you are sitting comfortably, as the tale I have to tell, has nothing comfortable about it. A simple hospital visit, that turned into a total nightmare. It should have been straightforward, the ambulance should arrive with plenty of time to take us to the hospital, see the doctor and another ambulance to take us home again. It should have been that easy, but it was nothing like that at all.

My appointment was for 11:15, but as always, we had no idea other than what we had been told by ambulance control, as to the when the ambulance would actually arrive. They as always had told Adam that it would be here, anytime after 8:30 am, the time my alarm would normally wake me for the day. So yesterday, my alarm was reset, for 6:45, a somewhat ungodly hour that I wasn’t looking forward to at all. For me, an hour and three-quarters, is a lot of sleep to lose, but to be ready, what other choice did I have. As 8:30 arrived, both of us were now ready and there was nothing more to do, other than wait for the doorbell to ring. I went about my normal morning routine and found myself by 10 am, playing games just to fill in the time. Adam was pacing about, looking out the window in hope of seeing it approaching then sitting again for a few minutes until he thought he heard something. That is a game that I have given up on long ago, but it is a character that I recognise in myself from years ago.

It was 10:40 when the buzzer rang and the crew started their way up the sandstone stairs to our flat. Even before Adam had our door fully unlocked and the storm doors held open for them, I could hear the noise of the stairclimber. As much as I hate those things, I have to some extent become used to them, but the racket they make is unmistakable. I had turned off the computer and had my coat on and sat in my wheelchair when the noise in the hallway changed. I even said to Adam could they have made more noise if they tired, as their voices were echoing around the stairwell. Then there was silence. Just for a few seconds, before their voices appeared again, but without the unmistakable noise of the climber. There was the odd sound of it trying to move, but the sound only lasted seconds, before we were back to the over loud attendants. I headed to the door, intrigued by this point as to what was going on.

I arrived there at about the same instance as one of the attendants. The climber had broken down half way up the stairs, they couldn’t get the chair up nor down the stairs and were going to have to call into control for another two-man crew, so they could carry me down, or for another climber. We were just going to have to wait and see what would happen. As 11:15 arrived and went, Adam phoned the hospital to say we would be late. He returned to the living room, to let me know that it wasn’t a problem, we would be seen that day, either as soon as we got there, or we would be added to the afternoon list. Not perfect, but at least we were going to be seen. As luck would have it, the second crew arrived quite promptly and were made it to the hospital, before 12. During the trip, we were told that the stairclimber had just returned into service, after spending the last 7 months in Germany being repaired. The crew were hopeful, though, that it just needed a properly charged battery.True to their word we were seen promptly and were back at the ambulance station within the hospital, to wait for our return trip by twenty past.

We were with the consultant for about 15 minutes, discussing what had happened in the past six months. To be honest, I didn’t have a great deal to report, as my chest has been really quite good, just the odd difficult point which he put my mind at rest about, in fact, things have been so good that he suggested that we didn’t need to return, unless I was having problems. With Adam working in the same hospital, he can go and talk to them at any time if needed, so we are in a different position from many. Right to the point that he has said he can just drop of a sputum sample without even talking to them, should I be having new problems. It was at the point where we should have probably been leaving when I suddenly remembered that I had forgotten to bring my DNR with me, as I wanted it added on to my hospital records so that no mistakes could be made in the future. I had to once again show that I wasn’t depressed and that I knew what it meant before he agreed. But he congratulated me on my ability to have looked forwards and to have made this decision so that it didn’t have to fall on Adam in the future.

We were about to leave when he once again gave me his standard warning about not being able to give me oxygen at home if I continued to smoke. I instantly pulled him up on it, and told him that I had read Scottish government policy that said the total opposite. As I went further in quoting some sections, he showed quite clearly, that he too had read it. Although not word for word, he too started to site parts of the policy document, both Adam and I knew then, it had been nothing but a hollow threat, and we had caught him out. Adam and I chatted about it on the way to the station room, I have to admit, that was quite smug about it actually. I seem to be growing stronger in my old age, as a few years ago, just because of his position in life, I wouldn’t have questioned him. I used to be very much part of the school of thought, as in “who am I to question someone more learned than myself”.

We had been outside for a cigarette and had been waiting for well over an hour for our transport home, when the women who runs the system within the hospital, decided to phone and find out what was happening. We were told they would be there in 20 minutes, a time that came and went. She called again and while on the call, she put it onto speaker phone, ambulance control had just realised they needed another stair climber to get me home. It was then that I started to get uptight and reminded Adam about what I had said, just a couple of days before. I had had the strangest feeling that the whole day was going to be a disaster, one that was going to push me to the limits. Control ordered another ambulance to come for us, we had little faith in their timing of half an hour and it too came and went, but this time for just 5 minutes.

When we arrived back here, well clearly, I thought that was it, it wasn’t. We were half way up the third flight of stairs when this stairclimber also broke down, this time, with me in it. I was in this half sitting, half lying down position and there was no way of getting me up or down, it was totally dead. Adam had run up the stair ahead of us, so he could get the doors open, it took him a couple of minutes to realise the noise in the hallway had changed and to return down the stairs to be with me. At first, I was fine, but when they called in and were told that there were no other batteries to swap over with and that carrying me was the only option, that I started to get wound up. I also heard them say, that not even a six-man crew could lift me and the chair, the whole thing was too heavy and didn’t have anything to hold onto, to lift it by. I was totally stuck. The tears started and my entire body was shaking as different nerves started to react to my distress. They did their best to calm me down and to reassure me that I was perfectly safe where I was, but trust me, it’s a position you don’t feel safe in.

The crew were great and didn’t take the word of their control. They knew where there was a battery and they called the guy who had it. It was on board another ambulance which was at the Southern General, half an hour from our home. I was just going to have to try and calm down and accept what was happening. I had a cigarette and Adam brought me a drink and between the three of them, the took me through several fits of tears and tremors. Adam even took over holding the bottom of the chair so that I could see him with ease, which actually helped a lot. No matter how well trained these crews are, it was being able to see Adam and knowing he was holding the weight at the bottom of the chair, gave me more trust in the fact I was safe.

The second battery arrived and switched them over. At last, we were on the move again. This is where it gets beyond a joke, half way up the final flight, it too broke down. I was once more stranded. It was the first time that luck came into this whole things. As they are apparently designed to do, there was enough power to go downstairs, but not up, so we at least could return to the landing, where we waited for assistance again. Another 15 minutes of waiting and yet another crew arrived, this time, I changed into the chair they can carry, and that was how I eventually arrived home. I know this post is long, but it was a long day and one that that needed to be written about, as without a doubt, it is a mirror to the state of NHS. At 4 pm yesterday, the time I arrived back in my home, there wasn’t a single working stair climber in the entirety of Glasgow. Nor will there be today, as those batteries take a full 24 hours to charge and no, they don’t have spare ones charging all the time.

By bedtime last night, I still had that feeling that I could burst into tears any second, I was right on the edge and I had no idea how to get rid of it. I have to admit, that even writing this, has made me feel that way again. I am sure that you also understand why it has taken till now for me to make a post at all, something, I thought I might have managed to write when I was home yesterday. The bad news is, that I once again have to put my life in the hands of the ambulance service next week. I just hope it is nothing like yesterday.

Please read my blog from 2 years ago today – 25/05/2014 – Facing the facts

I woke at midnight, I wasn’t sure the second I woke what was wrong I just knew something was and that it had broken my sleep abruptly. Then it happened again, I can say that as the second it did I knew that was it, that was what had disturbed me, something really hard to do these days. My lower legs both of them were in pain and not a spasm, this was different almost as though they were causing me pain just because they could. I lay there for a few seconds……

So far, so good

I really didn’t think that I would even get the chance to start writing today, but finding myself up and awake at 5:30 am, thanks to Adams snoring exceptionally loudly, here I am. Actually, it’s not fair to put all the blame on him, yes, he woke me, but my stomach was telling me that I needed the loo, so even if I had managed to shut him up, I still wouldn’t have been able to sleep. In other ways as well I am glad for that earlier start, although I doubt I will be saying that by this afternoon. It is just touching 8 am and I have shoved through everything I would normally do for twitter and managed to get myself ready, so whenever that Ambulance arrives, all I need is my coat. It’s really odd sitting here knowing that I have my makeup on and my hair done, and not just my normal bed head design that prevails at this time of day. I feel like a different person. The entirety of this post is going to have to be done in bits, as I grab a few minutes in between the final touches required before we go, and of course, dependent on when that is, and when we get home again. I just hope it won’t be too bitty.

Something really odd happened last night, not with my health for once, but with my hands. I have been wearing rings on nearly all my fingers for most of my adult life, but the center finger on my right hand had four completely stuck on it. The last one to go on was actually a stupid thing for me to have done. I knew before I even shoved it onto my finger that it was going to be a tight fit, but I have for some reason got rather large knuckles, which means that the even if a ring is too tight to pass over, it will still spin around annoyingly once on. When I pushed it on to my hand, I did so as a way of keeping the other three still. At first it wasn’t a problem, I could pull it off with difficulty, but it did shift. Then I gained weight, need I say more. For at the least, it has been there for 9 years, but possibly longer. I don’t think I have lost weight suddenly, but for over a week I had noticed that my other rings were spinning more freely, so I grasped it and pulled, why it came off I don’t know, but off it is. I know this is a dipsy suggestion, but, could the fact I am using my wheelchair mean that my fingers are losing weight, if not the rest of me? It’s just an idea, but it’s the only one I can think of. I haven’t seen them for years, but I am sure they will be online somewhere, but I really need to buy some ring guards. They act like a spring fitting and let the ring pass over my knuckle then jump tight, holding the ring the right way around.

10 am. I really didn’t expect this, but we are home! Hospital visit complete and without the slightest hitch, if only it was always like that. We arrived at the hospital and were seen within 10 minutes of the ambulance drawing up. The doctor was really nice. She looked not just at the one I was worried about, but several others that are on my back and one that is on my chest. Apparently, I have Atypical moles. So I was right to be concerned about it, but in this case, there is absolutely nothing to worry about. She thinks that what has happened is that it had a slightly raised edge, and that edge was caught on something and been literally lifted it off my skin. Which made no sense to me at all, as I never wear a bra or tight clothes. I am also very careful about how I scratch my back, I have in the past caught moles with my nails. The more I think about it, the more I think I have the answer. Like most people, when I first lie down at night, I shift myself side to side until I am comfy. I am guessing, that that side to side shifting has been slowly lifting it off my back. Neither Adam or I thought about it at the time, but I have been left with the concern that it is actually going to continue separating itself. I have the horrific idea that one day I will wake to find it left on the bed behind me. She did say that because my moles are Atypical, as in they have raised sections and lumps in them, that we need to keep an eye on them for any changes. The fact that I don’t go outside isn’t enough, unfortunately, it is another one of those age things. At this second, we have nothing to worry about.

I couldn’t believe how smoothly the whole thing went, not even the stair-climber was as violent as usual. We were down and back up in a fraction of the usual time and I didn’t feel sick, not even for a few seconds. I know that it was only luck, but when we returned to the room where you wait for your transport home, the crew that brought us there, were still sitting chatting to the receptionist. They were waiting for a patient to come down from one of the wards. One quick call to their base and we were also on their list to take home. I had been so prepared for the fact that we would be sat there for hours, that I was sure that any second they were going to get a call back saying they couldn’t take us on the that run for some odd reason. But, no, we were off and home within minutes, if only it could always be like that. Fingers crossed, our next trip at in November will be just as smooth.

Over the last couple of weeks, I know that there have been quite a few people concerned about me due to this blog. Firstly, please don’t worry. What I have been writing in here is my inner self, my gut reactions if you like to life. I am very aware that lately my writing has been on the dark side, this doesn’t mean I am slipping into depression. When you have led a life like mine, there is a lot of darkness boxed all over the place. In normally work on them privately, but as this one is 100% about my health, it felt right to put it here. After all, the whole point of my blog is for the absolute truth of what chronic illness does to someone. It doesn’t matter what condition you have, the physical effects of them, is less than half the story. There are so many emotions that go with it, and I hope that they have all been shown. It is one of the reasons that I began to write this. You can search as much as you like, but nearly all information available about chronic illness is about the symptoms. Even then, the majority of them only tell you the basics of them. I wanted to know how they felt, what they did to your life, the true impact, not just their names. If you read back to the beginning, you will find spells like this showing up throughout. This one, though, I admit, is deeper and darker, but the phase I am moving into is the darkest I have ever had to face. Without a doubt, one of the dangers of chronic illness is depression. I have always believed that the fact I am so aware of the dangers, having had it in the past, that I should be able to control it. I don’t doubt there will be spells of it as things progress. The idea that I can go from where I am, to my final destination without it, would be ridiculous. I doubt being bedbound, will be a bed of roses.

I have made a point of always working through whatever my brain decides has to be faced. The worst thing I believe that anyone can do with anything, is box it and nail it down, that is the start of all danger zones. Yes, I do box things, we all have to, but I never put any nails in anything. My mind is free to demand that I deal with anything whenever it wants, just as it did the other day with that unwanted image. I also make space most days to deal with those thoughts I packed away for when I had time, I make that time. It’s a couple of years ago now, but I spent several months, just going back over my life and dealing with all the anger, I had inside towards people who had hurt me. I am not the sort of person who finds it possible to hate, no matter what anyone has done to me, I just can’t do it. I can, though, get angry and I had to get rid of it, that’s just what I did. I even forgave them all while I was at it. For me, it was the best thing I have ever done, that didn’t require either money or activity, and I would recommend it to everyone. Peace of mind is a precious thing. Dealing with all that ancient junk, also somehow how, helped me adjust into my new life of being unemployed and housebound.

I have gone from independent to being in need of total support, including life support. Without my wheelchair to get me around, well I would need 24/7 care and too close to bedbound for my liking. Without my nebulizer and my other inhalers, which all have to be used at least twice a day, I would find breath harder than anyone wants. Without being able to breath, well, we all know the answer to that. Mentally, it is actually a bigger adjustment than any of the physical stuff that goes with it. It is both easy and stupid to say, just get on with it, what is the big deal. My first time round using my wheelchair years ago to get around outside and in the office was a get on with it type of situation. I could deal with it with ease, as I saw it as no more than jumping in a taxi, to get me from one end of time to the other. I got in my wheelchair to get me from one end of the building to the other. But in small spaces, or at home, I was still able to walk as my problem then was fatigue. This time is different. This time, I don’t have legs any longer that can hold me up, they collapse, disappear and leave me stranded. This time, I am no longer a complete and normal person to look at, no matter who sees me now, they will see someone in a wheelchair. That is me, that is my new normal and that is a huge mental shift, and all of that has to be in here.

I know it is painful and heavy going for some to read, but I hope one day that someone like me will be able to read it and say, “I too can get through this”, that is the point. Right now, I believe that I am stepping through all of this quite well. I have thought several times, this it, I am there and I am myself again, then my brain disagrees and bang, I’m back walking through a forest, where every tree has thorns. It’s up to my brain, not me what you’ll find on these pages, every day is an unknown adventure when these pages are opened, not just for you, but for me as well.

Please read my blog from 2 years ago today – 19/10/2013 – Finding hope

I have always had the misconception that life was actually meant to be simple, I don’t know who told me that or why I have managed to got it so wrong, but still to this day I have a small section of my mind that won’t let go of that wonderful but oh so wrong…..

A Hospital issue

Last night, I climbed into bed, tired and more than ready to sleep. The TV schedule on a Saturday, are constantly shifting, so I was a little later than normal, that, though wasn’t the reason I was so tired. I have been finding the last few days draining. When my mind doesn’t want to shut up and only full on distraction seems to be of any aid at all, my strength fails quickly. Despite going to bed as always in the afternoon, I don’t think I actually slept. I just lay there, with stuff flying in every direction in my head. When I was once more back in the bedroom, ear plugs in place and the last scraps of light blocked out by my mask, I feared that the night was going to mirror my last visit there. When I had been getting ready for bed, almost as soon as I entered the bathroom and distraction vanished, I found myself thinking about the final paragraph of yesterday’s post. I kept wondering if I had written the final sentence correctly. Was it fine as it was, or should I have actually worded it slightly differently, so that it ended with a question mark? Once in bed, I was almost decided that I should change it, as it is a question, will I be able to just accept, or is that more a blind wish. There was a tear running down my cheek, this was the first time in my life, where I was seriously facing my own mortality.

It’s easy to say, we all have to die and to sit and think about when and how ours might happen. That isn’t facing your mortality, that is admitting it, facing it is a totally different thing. Just like that image that appeared, so did that tear, without permission or thought. One tear, not the flood that you might expect, just that one. Tears won’t change the fact, or make it less painful, but it’s not the type of pain that requires them to flow. It was odd, I wasn’t happy about what I saw, or the fact that it is approaching me, but there is an acceptance already there that I don’t actually remember either giving or working on. Tears would be appropriate if someone suddenly put a gun to your head, as that isn’t what any of us expect, our mortality would then be imminent, mine isn’t. It’s still out there in the future, what has changed, is that it is in sight, that’s the only, but a really big change, it now has a tangible reality. Just as I know that the time where I will need more care, someone to come in and assist me to do things that Adam can’t or I don’t want him to, is closing in on me, so is this. Yet, it still feels like yesterday, that I was working, going out every day and living like everyone else. Yesterday, I got angry because my day had run away with me, and there was suddenly not enough time left in the day, to do all I had planned. Adam said something along the lines of “who cares about the hours, it’s the years that worry me”. I corrected him by saying, “No, it’s the hours that matter, the years take care of themselves”. The truth in that statement felt and still feels starkly real, the years will take care of themselves, as I won’t be able to take care of them.

Today, though, is about getting both mentally and physically ready for tomorrow. No, that isn’t some kind of statement that links in with the above, this is something totally different. Once again, I’m on my way to the hospital, at least this time, I have the novelty of visiting a different department, I’m heading for Dermatology. A few weeks ago I wrote a post in which I explained that I had found a mole on my back that was doing something rather odd. I had emailed a photo to my doctor and he doesn’t think that it is anything to be worried about, but that due to the change, it should be checked anyway. So once more, I am heading for the hospital and today, I have to shower, wash my hair, tidy up any that needs removing and generally get ready for being out of my bed an hour early tomorrow, which is when the real fun begins.

To anyone else it wouldn’t be a problem, to someone like me, the whole thing is an unwanted nightmare. The last time I went, I was lucky, I don’t think the Ambulance crew thought so, but I was delighted when there was no stair-climber available. Trust me, being carried in a chair, by four people, up and down six flight of stairs, is a hundred times better than that monster of progress. If you don’t like fairground rides, you too would hate the stair-climber. It’s violent rise and fall action, that pushes your stomach into your mouth, is enough to upset most people, and part of the reason for my early rise. I am lucky enough to have a supply of anti-nausea pills, I have them as nausea is, unfortunately, another symptom of my PRMS, but the tablets do take a little while to work. With the Ambulance possibly here as early as 8 am, I need to be dressed, fed, drug program completed and even my hair and a little makeup added for vanity. Yes, I do have a little of it left. It is going to be a long and tiring day, and like all the rest it is going to take me a few days to get over it, and that is if it all goes to plan. Our unfortunate experience says that it is quite likely going to do anything but. We frequently find ourselves through the doctor side of the day with ease, it is getting transport home again that makes it such a drain. Hours of just waiting, sometimes right into the evening, isn’t uncommon.

I just remembered to plug in two E-cig batteries so they are also charged and ready to go, the first tick off my to-do list. The last two times I have been out, I totally forgot about them. I have had to charge two batteries, not because I think we are going to be out long enough to use one, but because I haven’t used them for ages, I didn’t want to take the chance that one might die. All the hospitals in Scotland, now have a policy that says that you can’t smoke a real cigarette, anywhere within their grounds, not that anyone really pays any attention. Adam is perfectly happy to wheel me outside to where all the other illegal smokers stand, but my nicotines levels dip quite quickly, a side effect of constant availability at home. Here, sat in my home, I don’t need to worry about charging and all that fuss. I use one that works off a USB, so it always works perfectly, but not much use anywhere else. If there is one place that a nicotine addict needs their drug, it is sat waiting and waiting in a hard hospital wheelchair, no, I’m not allowed to take my own. Rules, rules, and more rules. I’m waiting for the day to arrive, when you have to take a test, just to be allowed in their precious property. At least we have managed at last to get them to bring Adam with me in the Ambulance, they have at last accepted I need him with me.

On one level, I fully understand why patients go to see their doctors, rather than the doctor coming to see them, but on another, I don’t get it at all. To get me there and back again will take two, possibly four, if the stair-climber isn’t available again, with between two and four Ambulance crew, twice over at this end. The cost of that alone isn’t cheap. Clearly, if tests need to be done, then the patient must go to them. But a lot of the time, it is a chat without even an examination, which could be done over the phone, and if an examination is needed, then the doctor could actually go to them. The hospital is a ten-minute walk, or more likely, a two-minute drive from my flat. The doctor with a nurse for security, could in one car, be here and back in under 15 minutes. If a patient can get to the hospital, without transport having to be laid on, all is well, but surely it would cost less if they had a monthly list of those who are not able, to which the doctor could be the one making the visit. Especially, if the impact of going out, is detrimental to the patients health. I know that would take joined up thinking, but if it makes sense to me, how come it doesn’t make sense to them? Isn’t it time that the NHS used joined up thinking and started to use things like Skype, to cut down cost and improve patient satisfaction. Yes, you can smash tradition to bits and start again!

Clearly tomorrow I don’t have the slightest clue if I will or won’t have time to write a post. Don’t worry, I will be back on Tuesday if I don’t, just remember where I am and don’t worry about me, I am fine.

Please read my blog from 2 years ago today – 18/10/2013 – Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual…..

What was the point?

Everything is behind time today, as I have at last been to see the Pain Clinic. I have always refused to go but then thing got bad and the MS Nurse convinced me that they would be able to help me. I really wish I had stuck to what I had been doing for years, refusing. Already I know you all have realised that they can do nothing to help me, yet another door has slammed shut on my first attempt to go through it. I sat with the doctor for about half an hour I started at my feet moving upwards, at each step he wrote it down and nodded. I went over the bowel problems and I listed it all step by step, the nods continues along with the odd question about the words I chose to describe things, eventually I had reached the last section and I waited as he for the first time looked at my list of meds that I am on.

We had a discussion about how well each worked, he was concerned by the level of the MST I am on as it is close to the max anyone would be happy for me to be on. Again we went over the problems that as time goes on I will need higher and higher doses, eventually this would be a major issue. I knew all that but there is no other option, it is what lies ahead and neither him nor I can change that. Then at last we got to the point the whole thing was about, what they could do to help me. All he could suggest was that we changed two of them for two other drugs. The drugs he said that were available might not work any better than those I am already on, there were no guarantees but for some they give a little higher pain control. The change over would take a few weeks and making the change would make me a lot worse for the first few weeks and at the end, well who knows, better, the same or worse. Next he told me about two other drugs that I have not tried that might have some positive effects, both are cannabis based and one rather hard to get approved, but he had little faith in either of them for those in my situation. He had prescribed them to a few of his patients but none had found them helpful in any way. I didn’t ask at the time but I should of, if they didn’t work, why tell me about them.

He had through out been trying to tell me that I would be better off seeing my Neuro, I told him that I hadn’t see them for years at which he was shocked. I went over how I used to see them every year, but when I became housebound I saw my Nuero who sent to see rehab and a physio. both were totally direct in that they couldn’t help me, there was nothing more available. I never heard from my Nuero again, that was 5 years ago and not a letter nothing. Not only did it feel as though I was abandon, I thought that it was because they could do no more. He checked my on line records and was surprised to see there had been no follow up, he was sure it was an accident. Accident or not, if they can do nothing and they want me there just to nod there heads and say we will see you in a year, what is the point.

I asked him directly if he was me, would he go through the medicine change over and try the other meds on top, he said no. As I feared here is yet another Doctor to add to we can’t do anything list and another letter onto my file saying just that and that he isn’t going to see me again, as there was nothing he could offer me. So I am now home again, exhausted and wishing that I had stuck to my first reaction to the Pain Clinic idea and not wasted my time morning having to go up and down in that horrid stair climber, being dragged around backwards in a wheelchair and draining my days energy for nothing. I wish I could give you all a more positive account of my experience, but I can’t. Adam has returned to work and once I have this posted here and on twitter I am going to my bed, I need to sleep this off and start on a brighter mood later.

Sorting out the clinic

Evenings for me seem to have settled into a pattern that I don’t like but seem to be stuck with, but they are really strange. What I am finding so hard is that when Adam comes home from work until about 8pm I feel totally awake and happy to be sitting chatting and watching TV together, then something happens. It is sudden and complete, in seconds everything changes, I am exhausted, feel physically ill with it, as in a bit sick, dizzy and feeling a little like being drunk but I’m not. The only solution is to go to bed, which can happen anytime from 8pm to 9pm, just depending on how bad it feels. I lie for just a few minutes feeling worse and worse before suddenly going to sleep. It is incredibly hard to spend all my daytime alone and them not being able to stay awake when I do have company. What I don’t understand at all is the sudden change, I am honestly really awake and feel as though I could easily stay up until 10 or 11, then there is this crashing out, like I jumped of a cliff or something. It never happens during the day, although I sleep for a couple of hours every afternoon, then it is a more normal gentle slide into feeling tired and then tireder until bed is my selected solution, normal if you like.

Last night was the normal, to be honest I could have gone to bed earlier than I did but I was waiting for Adam to come out of the shower. By the time I did get there at 8:45 I felt as thought I was almost ready to be crawling rather than walking. As normal the 11hrs of sleep felt like seconds and when the alarm pulled me into being awake, I struggled to let the night go. In the last few days I have read loads on sleeping patterns and those connected to all and any of the conditions that I have, but I can find nothing that is the same as how I feel. Those who have been reading for a while will already have realized that there is one thing I hate more than any other and that is not having a reason for something. I suppose that is understandable having spent nearly 20yrs fighting to have a diagnosis of my MS, but it just niggles and niggles at me all the time. So if any of you have the same problem I would be interested to hear from you as I feel kind of alone at the minute with this problem. I don’t like alone, lol.

My stomach is really bad in the last couple of days, more and more pain, bloating and discomfort, although the letter that was read to me over the phone has arrived, I haven’t received an appointment yet. The letter doesn’t seem to hold out much hope though, the final line she says she isn’t sure if they can do anything to improve my symptoms due to my MS, I still want to talk to them again as I want it in black and white if you like, that all my symptoms are due to my MS and if there is anything, even something small, that can help I am willing to try.

I phoned to book the ambulance for the 8th when I am going to the pain clinic and nearly lost it on the phone when they told me they couldn’t supply a two man team with a stair climber to get me to hospital before 10am. Every time I call them the rules seem to have changed and I thought that this would mean that I would have to make yet another appointment and wait yet another 6 to 8 weeks. I booked the ambulance then called the clinic to find to my relief that they were fine about it. Although I am meant to be there for 9:15 they do now allow for this when you are being brought to clinic by hospital transport. What is now worrying me is that they said there are only 4 slots where you can book the stair walker each day, so I am now wondering how long I will have to wait to be brought home again. I really don’t think they understand the stress of these constant changes and uncertainty cause for people who are ill. After all they are there to supply a service and the simplest thing to do I would have thought is to inform the patients clearly of the rules at that time, as well as to tell the clinics, after all they should have known the situation when they gave me the 9:15 appointment. I foresee another day of things going wrong!