Sunday

Well, woke up at around seven and decided to take my bone sparing pill straight away though left the paracetamol til eight rather than taking it half an hour after the first pill. Better not to start it too early. I find starting at eight, then twelve, then sixish to sevenish, then ten to elevenish works best for that. Waking up at night means I can take some oramorph then which helps with the pain a bit but I make sure there's a few hours gap between taking my last dose of that and the bone sparing pill.

Well, all done now and my hair washed. It used to make me gasp for breath leaning over to wash my hair .. it was painful too. This morning there was a little bit of breathlessness because the muscles had been on the move again but nothing like it used to be when it was so compacted.

Been playing on this site this morning:

http://www.freerice.com/

I was sent the address a couple of weeks back and it's an add on to the free clicking sites

http://www.care2.com/


http://stopglobalwarming.care2.com/

etc

and

http://www.thehungersite.com/

Both which I've written about a few times on the blogs.

Waiting .......... !!!!

The link on the previous post's working now!! I've been doing a little sorting out and'll soon be off to get some rest. Been waiting to take me last dose of paracetmol for the day as I was a bit late taking it earlier on and had to wait til near midnight to take the next one. Still there you go. Don't mind really cause I'll be up at eight. Tonight I want to make sure that I get the last one in as I take the bone sparing pill tomorrow that has to be taken before any other medicines so I have to wait half an hour after taking it before I can take any pain relief. Eight o'clock's a good time to start the day I guess as far as the pills go. I can't take any medicine, eat anything or drink anything other than water for half an hour after taking the pill because of possible reactions that would stop it working. I also have to drink a glass of water with it and try and stay sitting up and, if possible, move around a bit.

My steroids are now taken away from the calcium pills too as I suppose it's possible in some people that they could interfere with the calcium absorbtion if taken with the calcium pills.

I was reading too that steroids can interfere with your moods. Guess I've been lucky there though I do get to feel tired but I think that could be from the illnesses and all the pain relief. I'm told that morphine can make you feel tired and I take quite a lot of it.

Well, time for the oramorph and paracetamol.

Saturday

Well, not a bad day really. Up and down stairs twice with the rubbish and two trips along to the main street without feeling too bad. I still rest at Waterstones which makes things easier. Today the first bit of the journey was the most difficult while my body adjusted to the changes since I'd last been out so sitting down after a few minutes walking helped a lot. Coming back I started getting noticeably breathless for a couple of minutes before I got in .. not sure how much of that was due to lugging a heavish paper + supplements and a couple of bottles of disinfectant spray or if it was just due to having been on my feet quite a bit outside of the flat with no support other than my stick. I'd decided against the paper on my earlier trip cause of the weight but thought it'd be ok along with the disinfectant on the later one. Well, it was really. I sat down as soon as I got in and my breathing was back to normal within three minutes. Not so bad, huh!!

Slowly sorting things out so that I'm ready to go when I'm well enough. Things packed in boxes and cases. Night times are quite painful as lying down stretches my back out and it's got more noticeable over the past few days .. I've had a cold so that probably added to my aches and pains a bit but it's more than that as I can hear clicks as it stretches out which it wasn't doing before so it seems as if that's more on the move too.

The cold had made me quite bleary too. My mahjong levels were down but this evening I was quite happily playing as I was before and chatting on the phone at the same time so I guess the cold's over.

Apparently lots of people my age are playing games on the computer of various kinds hoping to keep the brain active. Hopefully it'll work. I know that a little while after doing that couple of weeks with lumosity things seem to have improved, well, without being sniffly and bunged up with a cold. Not just with the mahjong either but there was a noticeable difference with a sound/visual memory game I play with birds twittering.

http://www.tldsb.on.ca/Schools/GrandviewPS/Room_108/pattern/memory.html

I know mum and dad used to play cards and scrabble and read to keep alert .. dad was ok but mum developed an illness which the form of dementia she had sometimes accompanies so there was little if anything she could do to keep it at bay. I guess when people talk about not developing dementia they usually mean Altzheimers with that developing independently of anything else.

Still reading my book. Bought another too as I've said I'll lend one out. Well, it worked out at four for the price of one or near enough anyway at The Works!! It's interesting to read other people's viewpoints.

Saturday

Ah well .. today's probably been my best walking day since I became really ill. Well, since the pain and breathing problems stopped me getting around much. I wasn't going to go out today because I've been feeling rather tired but then decided it's best to get out there because it helps the changes in the muscles fall into place.

Last night my back had been painful and was causing quite a bit of breakthrough pain, then this morning there was pain in my left hip. And, then, this afternoon there was a sudden movement in the muscles in my left side that made me squawk with pain and I wondered if that would be the start of some heavy duty pain that side for a few days as it has before. But, no, it just appeared to be the movement that caused the extra pain and then it settled down again.

So, I decided to go out. I was a bit worried that there might be more muscle movement like there'd been earlier on or that when I was moving about more it might start some heavy break through pain off.

Break through pain is when the pain breaks through the pain medication.

But when I got out I found that walking was easier than it'd been for a while. There was the less internal pressure than there'd been for a long time and my breathing was much better. I was a bit breathless for the last couple of minutes and did sit down as soon as I got in but I wasn't as breathless as I sometimes am and I was carrying a bit of shopping as well.

I'd bought another copy of the book from The Works that I'd given away the other week. I hope she enjoys it. I'd been back to get another copy for myself and then after reading a couple of chapters decided to get one for a relative.

I'm also in touch with other people who have the auto immune illness now which is cool. I've already met someone who has a brother who has a very similar illness to mine. I felt sad as he is much younger than me and it seems a lot to have to cope with. And he has rheumatoid arthritis too which is another auto immune illness.

Stayed up to fit my last dose of paracetamol and oramorph in so I'll get that sorted now.

Long lost diaries

I have a lot of diaries all around the net .. set up while I was looking at the different layouts and things like that .. most of them are lost now. I can't remember where most of them are now because they weren't used.

Me butterfly one was a me only to begin with though is now a friends only. Named because of the site rather than anything else. I did have a LJ for a while but that was when mum was here .. I imagine it's still out there somewhere .. though like the rest it's private .. so there's no chance of me finding it .. or anyone else who shared it with me ,, cause they can't remember what it was called either. I'd imagine that it'd be difficult to read because most of it was about her illnesses and looking after her. I deleted quite a lot of it when I was going through a patch of deleting things soon after she passed over. It doesn't matter that it's lost I guess though cause I can remember everything that would be there I think.

It was good I guess for the people who shared it with me cause they now know a lot about caring for someone who has these problems. I came to it without very little knowledge at all. What I learnt has helped a few people. One especially who decided to give up her new job to look after a family member with another form of dementia. There'd been confusion because no one could understand the personality changes and not knowing that this can be a result of dementia people were taking it personally rather than a symptom of the illness.

Thursday

Up, fed and medicated!! Still slowly sorting out and getting ready for the time I can go home. Hopefullly it won't be too long now. I don't expect to be well .. just well enough to travel without making things worse. My sense of taste seems to be coming back after months of being totally on the blink.

Haven't been sleeping that well because of having a cold and sometimes because of muscle changes. Took a while to get to sleep last night but when I did I slept through seven hours which was good but I'm still feeling very tired from colds and those sleepless nights.

Was taken out shopping yesterday and we had a good time. She said that it's more like going out with a friend than work. Yeah, it's nice. Got me food basics in for the week .. and heavy things like disinfectant which I still find hard to carry back because of the strain it puts on my lungs.

Did a bit more sorting out here.

Said someone else could have another of me books. I'd leant it out, she's half way through and her daughter wants to read it too though they know far more about the subject than I do. They might as well keep it though and pass it on .. saves them feeling as if they need to rush it. I'd've just given it away sometime or other anyway as I would't've been taking it home with me now that I've read it.

The media is full of stories relating to life after death. I don't get to see the TV stuff because I gave my TV away thinking I was going home some time ago. Don't want it back as I've plenty to occupy me and I very rarely watched it anyway.

Soon be time for the next dose of paracetamol. I'll go out for a little once that's taken effect. I would like to be able to go a bit further than I can at the moment .. though on the good side I'm still managing the stairs pretty well .. got me rubbish well sorted out for the binmen yesterday. There was a bit of breathlessness but I managed ok and it was good exercise for me using the stairs. Never know what it's going to be like from one day to the next.

It's started raining .. still, I should be able to manage my umbrella .. did the other day. For a while that made my breathing worse but walking back last time in the rain and with umbrella though I didn't feel too good was doable. I kind of see it as exercising now. Hmmm .. ah, well, the sun's out now!!!

I'm half way through my paracetamol. I've taken my oramorph. Suppose I should have my protein drink too .. and my calcichew. I take the calcichews midday and early evening away from the steroids now and, ofcourse the bone sparing pill is always taken at least half an hour before anything except the glass of water that should be taken along with it.

Clouds are drifting insight again. I would like to go out .. though only for a short potter. Being out is different from moving around inside cause here I can just sit down any time. But still walking out is good for me.

Time to sleep

Quite an interesting day as I met a woman I'd met yesterday and we went for a chat and I ended up giving her a book I'd just bought from The Works as it seemed it might answer some questions that were on her mind. I had another similar book to read that I'd just bought from there too so that was fine. I've quite a bit to do and a bit to read as I'm waiting round to get well enough to go home. Just need to be well enough to travel without making things worse. Did a tiny bit more sorting out today though.

I have Gary Slapper's An Introduction to English Law to get me back into reading about that again and a couple of language courses. Think Gary Slapper used to tutor at the OU. And the Teach Yourself book. It'll be interesting to find out about the differences in the brain waves. I started meditating in my late teens or early twenties .. can't remember quite which though I'm sure I could work it out. I suppose just the little bit I do keeps the neural pathways ticking over so to speak and means that I can relax myself easily. It's something that suits me.

Don't know what's been chosen for the rest of the book .. it'll be interesting. I suppose healthy eating .. being fair in your relationships etc .. both to yourself and other people. Like when I came up to care for mum which was very hard work for many reasons. I can look back and there's a sort of sea of pleasantness or something that I chose to do that. I was in a position where I had the choice though I have to say it wasn't what I intended to do to start off with .. I thought that I'd just visit but stayed. When I think about that there's just a nice sea of relaxation .. though it was very hard work. I wish ofcourse that I'd sailed through with no bother at all .. but I did get grumpy on a couple of occasions .. one when I had to stop her leaving the flat when she was very ill .. though now I look back on the escape plans with a sense of humour .. she would wait til I was in the loo and dash out. When she was well there wasn't a problem .. but mum plus a cold was a problem. I mean it was only a few times but .. oh dear.

She suffered from Lewy body's dementia and parkinson's disease as well as a progressive skin cancer. Guess if I hadn't developed this illness I probably would develop skin cancer in time because I've spent time in the tropics too .. well, with the auto immune illness I have there's a likelyhood that I will anyway .. if I live long enough. I probably would've anyway in time though anyway. But, because my auto immune illness affects the skin in the way it does .. there's a great likelihood of it happening now.

That's life .. huh!!! But, it doesn't seem so bad to me now .. as I said I believe in life after death. Didn't a few years ago but I do now. Strange thing is that I'd stored up everything that people had told me over the years though hadn't known quite what to make of it .. but it was all there, including the two books I'd read that really mattered. The others that were just vaguely connected are more or less forgotten.

Life is strange though .. scientifically .. where did that first pocket of matter come from. Religiously .. if god created everything .. who created god? I guess most people I know are more religious than me .. though people tend to say god or spirit around me now and I get an assortment of cards at christmas etc .. if we swop cards these days. Must say, it's far easier to believe in life after death than it is to comprehend how all this .. atoms etc came into being. A much simpler idea.

My possible out of the body experience .. it wasn't a very involved one if that was what it was .. but perhaps the woman who said it was is right and I was just at the very beginning and moved and that's why it was as it was and over so quickly. I can remember wishing it had gone on for longer.

I was amazingly relaxed .. though certainly wasn't dozing. I can still get very relaxed even with the pain and the muscle tension. Guess it's something to do with changing brain waves .. which is why I'm interested in knowing more about all that in relation to sleep and meditation. When they say "happiness" it doesn't mean that you're going to wander through life in some kind of state of complete happiness. My life has been quite hard .. but I don't know I guess my interests have helped me through .. and, possibly, the meditation. And, being happy for and with my friends and things like that.

I'll probably start making my little booklets too. Well, I've started one for my brother complete with illustrations .. but, I'd left it a while because I wasn't feeling too good at all .. I'll start again soon though. I've the little books to do them in and pencils and I know what I'm going to write and draw.

Think my two weeks with luminosity did help. I seem to be faster at mahjongg now!! I believe it takes longer than two weeks to build a neural pathway though .. more like four if I remember rightly. Thought it's longer than two anyway.

Well, off to get the paracetamol and a bit of oramorph and then to rest. Tomorrow's another day etc. Well, as it's just gone midnight that's a bit obsolete .. but when I wake there'll be more exercising .. and things'll've changed a bit.

Today!!!!

Woke up feeling really tired and with slight shaking in my shoulders and back. First thing to sort out is my medication. First pill down is my antisickness pill followed by the pain relief .. MST .. oramorph and paracetamol. Then, after waiting a while for that to kick in I get up, bringing my note book to mark off me pills into the living room and take the omeprazole to protect my stomach and the mycophenolate for the auto immune illness. Then I have something to eat and take the prednisolone again for the auto immune illness, an iron pill and my ibuprofen. It'd be better if I didn't have to take the ibuprofen really but they sure help to keep the pain down. But taking them with food helps, the same goes for the steroids .. the prednisolone.

I guess I'm still kind of ultra tired cause I've had a cold. Had the sickness bug a week and a bit ago too I think. Shut meself away for the two days recommended after having it which was better for me too. Difficult to tell if it was that as sneezing can set off a spasm anyway and I'll be sick but this felt different. Anyway I'm well over it now but I've had a couple of sleepless nights because of the bugs and all combined it's telling a bit.

Read an article about K.D Lang. We've a few things in common. I'm not a Buddhist though. She also believes that she's been here before I've no experience of anything that makes me think I might've had a past life here. Doesn't mean that I haven't just that nothing has happened to make me think that I might've! As I generally say I might be considered a sort of Buddhist because I'm kind of attracted to some of the philosophy that goes along with it. Just as I'm kind of with the last people I was interested in .. their belief in the continuation and growth of the soul is like mine now .. though I believe that for every living thing .. which is very like some Native American beliefs. Though these people do believe in the continuation of animal souls too I've noticed .. it's just that it's not written down in the original "rules." They also believe in personal responsibility which seems good to me.

My own personal experience, most of which has been shared, is what makes it real for me. People have said to me that someone is tapping me on the shoulder!!! Yeah, well. I had stored up things people had told me in the past too. I know mum had something happen when her mum died. I'll talk to my brother about it again cause she told him as well. I've read of and been told about quite a few things like this. Never used to think about it much though. People smile quite often at that!!!

Do a bit more sorting out I think .. or maybe head off and see if I can get some soya stuff I like. Walk part of the way there if I can. J ust sorting out me next lot of medication for the day. And I will meditate today rather than just listenuing to music. It's meant to be good if you're not getting enough sleep. One of the reasons that I bought the book that had something to do with the differences between meditation and sleep on the brain. It's in the Teach Yourself books series. Teach Yourself Happiness!!! Haven't started reading it yet .. been a bit too tired but will when I'm feeling a bit better. Can start by meditating and making sure I get enough rest and eat well.

Well, did potter off eventually

Didn't really fancy going out today but wandered off to Tesco early evening. There's a lot of movement going on at the moment and I wasn't sure if going for a walk was a good idea. But, I made it there and back ok though was wheezing a lot by the time I got in. One of my leg muscles had moved suddenly while I was out too but it didn't hurt or cause any problems .. as usual it was my lungs having to adjust to being more active that made walking hard.

I keep on thinking there can't be much more to do now but it looks as if the next few weeks will be carrying on much the same. Today did feel quite different though because I could feel more muscles moving as I walked along.

I don't suppose I'm ever going to be well again but it looks like there's still a lot of improvement to make.

Pain relief

I know too that meditation is said to help with pain so I will start meditating again. Meditating rather than listening to music and see what happens. It's variable now .. has been quite bad on occasion for a couple of days. I guess I'm lucky in some ways as morphine doesn't have to many side effects for me. The movicol is still in its sachets and I'm not feeling too tired from it I don't think. It would be nice to be able to control some of the pain myself though if possible and cut down on the pain relief.

I was looking through the law and language books yesterday and felt interest again though ended up with another book that I was looking through because I saw that it had something about the difference between meditation and sleep. I have to say I'm not listening to the music from the Unison website on headphones because I decided not to use them until my illness is under control. I decided that because of the skin problems. I like the music anyway and find it relaxing but I guess twenty minutes of quiet meditation would be a good thing to go along with listening to it.

Anyway, s'pose I better go and do a bit of sorting .. nothing too heavy. Maybe wait til two when I can take the next dose of paracetamol. I was told at the hospital that morphine works better with parecetamol. It's an interesting drug which gets used up by pain.

It's interesting reading that if you take morphine for pain you shouldn't become addicted. I was told when I was worried by this that the pain uses up the morphine.

http://www.stchristophers.org.uk/page.cfm/link=280

I don't see why there should be any psychological addiction because apart from easing pain and possibly making me feel tired .. and the tiredness could be from the rest of the medication and/or the illnesses .. it doesn't have effects that make much difference to me. I'm hoping infact that I'll be able to reduce it soon as hopefully things will improve and I won't need to take it .. either that or I'll be able to lessen the effects of the pain.

Anyway, taken the afternoon pain relief and given it time to work .. not that great today .. so off to do a bit of sorting.

Coping with pain etc

Managed to walk up two small flights of stairs and back again without getting too puffed this week. First time I've done that for a long time. Ofcourse, it was, as usual just a temporary thing but my breathing is definitely deeper now. I also had a day of being able to walk around a little easier than usual.

Got taken out to do the weeks shopping as usual though I still go out for little bits and pieces. The longer walk seems to help my body adjust to new movement. I go into deep relaxation very easily now too .. though that cause my breathing becomes deeper it can be a bit uncomfortable for me how my muscles are now but then that makes them exercise and I hope it'll become progressively easier.

Bathroom tidying today. Well, I've done most of the sorting out .. and putting my tins of food away in the kitchen. I've some tins of tomatoes, beans and carrots to use when I feel a bit better. At the moment I use prepared meals but I'd like to get round to sorting some food out for myself.

Just slowly trying to get sorted.

I wish there was something more I could do about the pain. I do wonder if being able to have OBEs or OOBE's .. they are referred to both ways .. would help with pain control. It sounds as if they could give a break from it. I tried many years ago and never got anywhere. Then I was just curious .. now I wonder if being able to do that could help. Anyway, maybe I won't be able to do that but I'll try and find out more about trying to control pain by distancing yourself from it. It's kinda using biofeedback.

http://www.chronic-pain-haven.com/biofeedback.html

I take a lot of pain relief but it still doesn't stop breakthrough pain and the pain does stop me doing things. Though the past few days I've been more interested in getting back to doing some things that I was doing before. Have to see how things go.

lumosity

Had a good time on the site for me two weeks and will be returning. I thought I would have trouble because of my illness and the amount of morphine that I have to take plus the pain and occasional breathing problem that would appear now and then .. but I was ok.

And now I better get to bed as they reminded you that sleep is good for the brain!!

Exercises to control pain

This is what I must have been referring to when I said I'd heard about exercises to help control pain.

http://video.stumbleupon.com/#p=dklcgk9v6a

I don't concentrate on mine much. I'm often interested in other things. I wonder if it's the fact that it's changing all the time is making this difficult. Plus the breathing problems are adding to the difficulties I have and there's no way that I can avoid knowing that they're happening.

Medication

I try and keep me diary up to date now cause it's just an I'm up, fed and medicated diary .... just to let people know that I'm up, had me breakfast, pills taken correctly before and after eating and marked it all down properly. Started it a long time ago, lost it after not using it for a while and then found the password and web address in a notebook. Decided to use that instead of starting a new one when I was feeling very poorly.

According to a notice in Boots lots of people have problems with medication and I have so much to take. I think I'll start photocoping sheets to mark off when I feel a bit better. I write how many of each pill I have to take down now too. The oramorph in how much liquid. It's still a lot to keep track of though and very important for me to do so.

I might photocopy a lot of sheets .. I take a lot of pills though it's not much to write out every night really.

Spirituality

The interest in qi gong came after seeing an ad for a dvd in Kindred Spirit last quarter. I'd bought it because there was an interview with someone I was interested in there and then had seen the ad. I hadn't heard of it before. I bought a small book from Waterstones and then started looking around the net to find out more.

Reading the magazine made me wonder at all the different forms of spirituality there are too. To me, after reading, talking to other people and having experiences of my own has brought me to my interpretation .. and that is spirituality is what you do which forms the spirit you have when you pass over. I think that because I believe in an afterlife.

Don't see why there shouldn't be one .. if you can believe all this has happened and you exist .. I think therefore I am etc .. I'd've thought that a belief in passing over is much less complicated. As I said my belief comes about from listening to other people's experiences, reading and from experiences of my own. There's enough out there to read and plenty of people who've had experiences that make them feel the same. It's just kind of putting together the whole experience of reading and talking to others and your own experience that forms your view I'd've thought. That's all it can be .. cause then you can make your own mind up. My experience can never be someone else's personal experience nor their's mine.

I've been thinking back to that time I mentioned .. I think in a very early blog about feeling as if I was seeing something that was me when I was very relaxed and dozing but not asleep. Someone I was talking to a while back suggested that it might've been the very beginning of an out of the body experience. I don't know .. it was over very quickly. It seemed different from what I'd read about but then people's experiences are different. I've not gone on to have an OBE since so really I've no idea at all but I can remember seeing colours I didn't recognise and I've read a description of an OBE that mentioned this too. It's thought that quite a few people have them .. about 10% of the population at least .. possibly more I guess.

I suppose that could've been what was happening but it happened for such a short time. I can remember a bit about it and how I interpretted what was happening. If I remember rightly I was resting on my bed and feeling very relaxed .. you know one of those ultra relaxed moments .. and I looked over to a part of the room and there was a kind of upright rectangular shape that had components I recognised and those I didn't and I felt it had something to do with my personality .. that it was me .. though I didn't understand any more than that. It was gone .. in 30 -45 secs or thereabouts if I remember correctly .. but what I was aware of was that I was looking over at the box.

Perhaps it was the very beginning of an OBE. I just don't know .. I was very interested to find someone who had the same experience with the colours though while having an OBE. I guess maybe lots of people have .. I haven't really thought much about it for a while until just recently so haven't spoken about it. If it was an OBE, and I really have no idea though accept that it could well have been the start of one, not much happened .. I suppose seeing colours I couldn't recognise and now can't remember .. just have the memory of this being so .. I said at the time that I thought my complete memory of it would fade very quickly and it did.

There's so much we don't understand. I was reading yesterday about how the way anaesthesia works isn't really understood and how a study had put forwards the possibility that nerves could transmit sound rather than energy. I know the way my anti sickness pills work isn't totally understood .. some of it is .. some of it isn't.

Ill

Well, wasn't very well on Sunday so have decided to stay in for a couple of days. The hospital phoned me and then I phoned me doc to cancel the appointment he'd asked for to make it later in the week. Just a bug but I was quite ill so decided to stay here.

Have spent quite a lot of time on the Lumosity site doing my two weeks free trial .. I'll join when I get home. Think it's been good. I'll carry on doing other memory games and related things til then.

I've been doing a little bit of Qigong too. Well, this exercise that I found on Youtube because it seemed to work on the chest muscles though he's doing the exercises standing and I did them sitting.

http://www.youtube.com/watch?v=BFqotaIc3Dw

Someone I was talking to here told me that her daughter had been asthma free while being on holiday in Spain and doing a lot of swimming but here had problems because of the chlorine in the baths.

She doesn't swim here because of the problem with the related effect from chlorine. I wondered if the improvement might be due to the exercise she was giving her lungs as I know of a couple of people who've told me that exercising appeared to have helped or stopped their asthma. I think I mentioned it on one of my blogs when the woman told me about Ravi Shankar and I was amazed because I immediately thought of the musician and didn't think that he had anything to do with teaching people breathing exercises. Then she told me that he was some sort of teacher .. she'd not heard of the musician so we both learnt something that day through talking. I never did get the booklet she mentioned but the exercises were breathing ones so it made sense. She told me because I was feeling ill and she wondered if they'd help me too. Someone else had told me that doing similar exercises had helped too .. if I remember rightly that was through tai chi.

Later on I wondered about the little girl on holiday and wondered if she was drinking the water from the taps in Spain because if she was she might be drinking the same as she would be here .. or she might not.

http://www.lenntech.com/water-disinfection/eu-water-disinfection-regulation.htm

To know you'd have to phone the people concerned in Spain and find out what they were doing in that region I guess.

I'm now doing swimming exercises on dry land to see if it helps me. I haven't asthma but I need to exercise to help there. I have bone problems but there are muscle ones too. Things are changing though slowly. As I said I couldn't bend over to wash my hair without it being painful and causing me breathing problems .. it's improved a lot. I do two rinses instead of just one now!!!

Going to do a spot of sorting out now but will leave taking things down til tomorrow.

cont.....

Haven't been out today though cause the nurse who comes to see me advised me to stay in as it's cold. Doctor's surgery rung in the late afternoon and said to make an appointment or he could come to see me. I'll go down there next week. Had me Protein drinks delivered. I have one a day of these on prescription to help repair what the illness has done. Don't particularly like them but I know they're useful. Some people liked them and some people didn't in hospital. They were kept in the fridge cause people thought they tasted better really cold. They're often prescribed when people aren't eating much, or have an illness like mine or some kinds of cancer. A month's supply is too heavy for me to carry!!!

It's good to go out for a short walk though as it keeps me more mobile though it can be difficult if there's some kind of new muscle movement as happened yesterday and my lungs suddenly have to cope with the changes while I'm walking. I'm usually sounding a little wheezy by the time I get back but it's just my lungs trying to push out against stiff muscles. There's always a very slight change when I'm walking. What has changed is that everything is moving more. I could feel the muscles in my back moving more than they had been with my breathing this morning.

thursday

Too tired to do much at the moment. Guess it's cause I've had a cold. In other ways things are still improving though.

My medication's changed a bit .. the steroid sparing drugs have taken the place of some of the steroids. Now I take three steroids instead of eight. The first steroid sparing drugs I was put on didn't suit me very well .. these ones are much better. I take an anti sickness pill too now if I feel I need it . Sneezing can make me wretch at times .. it's just a muscular reaction. Though the last time might've possibly been because I'd caught the norovirus that's going round the country .. maybe not though cause I was just wretching after sneezing and just for one morning. I don't sneeze and then wretch like I did when the muscles first tightened up though and was actually rather surprized when it happened again. Maybe it was just down to how the muscles had moved again.

I've been lucky as far as colds go and don't generally develop a chest infection or any secondary infections which is surprizing because some of the medication I take makes you more susceptible to them. My doc says that I must have a strong immune system. Anyway means I don't have to add anti biotics to the heap of medication I'm already taking. Less to have to remember!!!!

The muscles have moved enough now so that it doesn't hurt so much or have me gasping for breath when I wash my hair. Guess more flexibility is back there.

Don't listen to much music at the moment. I downloaded the free demo from here though

http://www.unisontherapy.com/products.htm

Still have only listened to it a few times.

Have also been listening to some of John Frusciante's music.