Zzzzz zzz zzz zzz zzz zzz zzz

Went to sleep instead of blogging yesterday evening. I've said I'll blog every day and I'll try to but as yet I haven't found a way of blogging in me sleep.

It's difficult because I know so many people. Not every one I know knows about my blogs .. and I mean not every one "in real life"as well as those I know over the net. I'll have to sort it all out again.

Anyway I just dozed off again yesterday evening again and when I did wake up in the early hours kept on going in and out of sleep just sitting on the sofa. I got about six hours sleep the night before which might be why I was so tired.

Tonight I'll potter off earlier with me book.

Zzzzzzzzzzzzzzzzz

I'm still tired. I'm taking iron tablets for my anaemia .. yet another side effect of this illness. Quite a few people I know are anaemic at the moment .. non of them, except for me, vegans or vegetarians.

Anyway my nurse wants to make an appointment for me to have a check up. One reason is the tiredness which will be partly due to the anaemia but also because of the medication and the illnesses. A lot of people are saying how tired they are at the moment though. And, ofcourse, that I haven't been putting weight on although I'm taking prednisolone. Though I haven't as long as I've been on it even when the dose was much higher than it is now.

Just waiting to take the last paracetamol and oramorph of the day then I can turn in.

Been up a while and have been chatting over the net quite a bit this morning. Fell asleep early last night after going to read for a while. Perhaps I should just rest when I feel very tired at the moment and see what happens. Not sure about sleeping during the day incase I don't sleep at night.

Quite sleepy

Up .. fed and medicated. The district nurse was here this morning. For the past couple of weeks I've seen the same one rather than a stream of different ones. It's a good idea because it's easier to assess how someone is getting on if you see the same nurse all the time. I don't know if they've just changed how they allocate clients or if they decide whether someone sees the same person all the time because what needs doing needs constant assessment and therefore it's better if they see the same nurse.

Meditation

I was wondering about the mention of sahaja yoga as a help in epilepsy. I'm not sure how healthy that would be!!! It's mentioned as something that apparently reduced seizures in some people which is cool. I would think from what I've read about it that it would be more beneficial than using a mantra .. repeating something over and over again in your mind to slow or hopefully block out intruding thoughts. Different types of meditation work for different people. And some people might find that it doesn't do much for them at all or that they can't get into it.

I mentioned before that when you fitst start meditating it can make you a bit twitchy as the body starts riding itself of tension. I also found that my mind would easily wander but I don't generally find my mind wanders much anymore even when I stop and start again. I get off days when I find it hard not to let my mind wander but generally it's ok.

Sahaja meditation:

http://www.en.wikipedia.org/wiki/Sahaja_Yoga


It's interesting to me. I was diagnosed as having epilepsy .. petit mal .. which is a very minor form of epilepsy after I'd fallen down a few stairs. I didn't have to go on any medication and never had that kind of problem again. I have no idea why it happened and then disappeared.

The shakiness that I was getting isn't anything to do with it. That's stopped now too. Hasn't happened for a few weeks and when this illness was more symptomatic it happened a lot. How many dinners did I lose!!!!!!

Epilepsy

Going back to the mahjongg .. if you suffer from epilepsy I wonder if any form of the game could bring this about. I find the game quite difficult really .. some layouts much harder than others.

Epilepsy:

http://www.healthscout.com/ency/1/guides/000044_2.html

I know alcohol can sometimes cause epilepsy. And, if you do suffer .. flashing lights/strobe lights can be problematic. I think my brother mentioned something else to me once but I can't remember what. He plays chess on a computer and doesn't have any problems. But that is a slow game.

The lifestyle changes section on health scout include references to flashing lights and alcohol

http://www.healthscout.com/ency/1/guides/000044_9_2.html

Here are some of the triggers for photosensitive epilepsy:

http://www.epilepsynse.org.uk/pages/info/leaflets/photo.cfm

It seems that the patterns on the original tiles might be part of the problem too. Dunno about the mahjongg fortuna ones .. but I guess as a rule of thumb if you suffer from photosensitive epilepsy it's best not to play. I see that video games can also trigger seizures in people with this kind of epilepsy.

Mahjongg

I don't know if this has anything to do with playing on a computer .. or, even, playing anything very quickly.

http://news.bbc.co.uk/1/hi/health/6931119.stm

But, they've found out that playing Majongg can bring on an epileptic seizure in susceptible people.

I know that strobe lighting can too.

I shall carry on playing on line though as it's rather different but it's worth knowing.

and ............

I also thought refering back to the book that malice aforethought would be part of it. If not in self defence.

Which reminds me I haven't started going through Gary Slappers book yet, In time!!!!!

Malice aforethought:

http://en.wikipedia.org/wiki/Malice_aforethought

Anyway that was my reaction to what he wrote. I didn't think that was what applied in the minister's case. I suppose he could have been a conscientious objector but if that was the case then he might have felt even worse about not opposing the Nazi regieme.

Reading ............

I'm still slowly reading my book. A chapter every couple of days .. but it's slow I guess because I've been feeling so tired. I was wondering how much I agreed or disagreed with the feeling that it's guilt that's the punishment when you pass over. Here I'm just going by my own beliefs that there is continuation after death.

I can remember from reading the books I found in a charity shop .. must've been Help 71 I think. Long gone but fondly remembered. They were about the near death experiences people have had. Mentioned them a couple of times before. Though it's not only Dr Moody's books I've read on the subject but I can't remember the authors or the titles of the other books as I'd just chosen them by subject.

One thing that some people experienced was a life review complete with experiencing how their behaviour had affected other people. They got to experience what they felt were the other people's emotions.

He brings up the story of a minister who was in the war and was reflecting on how this would be seen in spirit. I thought his actions would be seen as self defence but even so I could understand the guilt even though he'd been put in that position by other people who'd started the conflict. I suppose it must've been WW2.

I certainly believe in spirit now. As I've said before on a logical basis the thought of spirit is a lot less harder to grasp than the thought of all this evolving .. and I don't just mean the universe(s) but going back and back and back to why there is anything at all.

I'd read a couple of his books before finding these other two in The Works. And, I have another to read by another author.

Walking ... just walking

Walked down to the end of town and back again though I had to rest both ways. As I went through the park there wasn't a problem finding somewhere to sit. I know one person who donated a bench to the park. Maybe more even and we just haven't talked about it but I know for sure that she did. I was going to because I used to go with mum to feed the squirrels but in the end decided that the home should have the money for the residents. I could have ended up sitting on my bench if I'd decided otherwise.

I doubt if I would've been able to do that a couple of weeks ago. It's not long since trying to walk back from the doctors was a definite no no. The real changes seemed to have started when I started doing exercises that I thought might help. Walking kind of gets things moving. It's best if I sit down and rest after a few minutes walking so that the changes since I was last walking around can settle down.

Walking back wasn't easy for a while but then there was a bit more movement and adjustment and my breathing improved again.

Just sitting round tonight .. been playing games most of the evening. A go on gem shop and others. I've got to start doing other things. Think I was kind of thrown out of kilter last night because I turned in so late. I'm interested but whoozy!!!!!

Afternoon!!!!

Up, fed and medicated. I didn't turn in til late last night but woke up late this morning too. I had a good night's sleep. Depends on the pain levels how I sleep. Think it's just having a cold that's been making me extra tired. I know so many people who, like me, are feeling very tired right now and that's without taking shedloads of pain relief and having these illnesses.

The nurses tell me there are so many bugs around right now. At least I'm getting through them without any secondary infections and that's more than I can say for some people who don't have the added problems that I do.

games

Have spent toooooooooo long playing Gem Shop this morning.

Maybe it's relaxing or something. People say that about playing marjongg and I guess it is cause it holds your attention as your playing. Kinda takes you out of things.

http://www.hipsoft.com/gs_flash.jsp

Must get down to doing other things I guess.

I like playing over at King.com. It amazes me how fast some people are at the games.

Just look at this:

http://www.youtube.com/watch?v=AhamYX4qhTw

But ............

But I'll wait til me friends who've written in the comments say it's ok if what they've written is left there as they've been discussing their lives over the past few months.

I don't really just want to set up a new diary without telling her that I am on the site even though she can't read what I've been writing.

It would be much simpler just to leave it really.

What I could do .........

What I could do is just get in touch with the woman who has the other diary and tell her I was reading her diary before it went Friends Only and say that I'd like to carry on reading it and say that I'll add her to my Friends so that she can come and read mine before deciding if she wants me to read hers now that it's private.

I really enjoyed reading it and miss it. Could tell her about the blogs here too I guess. I know why she went Friends Only and I don't think she'll have any problem with adding me to her friends so that I can read it again.

Friday

It's quite windy today. Didn't sleep that well last night and listening to the wind brought back memories of mum. Well, it's coming up to Mother's Day and all the cards are in the shops. I've been trying to fine my LJ which I wrote while looking after her but I can't find it and no one can remember what it was called now.

I have so many lost diaries/journals/blogs on the net. Most created when I was looking at different templates .. some'll've been deleted because some sites give you a week or so to get writing and if you don't they delete your blog and membership to the site and you have to start all over again if you want to be a member.

I've five blogs of me own .. the four here and one on another site that I've had for years .. lost me password to it and then didn't bother with it for a year or so and then couldn't remember where it was or what it was called!!! And neither could anyone else. Found it again after looking through a notebook and finding all the info. It's a friends only one .. I set it up when I left LJ and came over to Blogger because I couldn't see any privacy controls on Blogger back then. Just four of us read it and as they didn't keep a diary really .. they were just there so that they could access the Friends Only settings to read my diary. Friends only means you had to have to have the writer's permission before you can see what's written in the diary or blog. I just have the one private one and that's me butterfly one where Ijust chat to some people I know, some IRL and some friends I just know over the net. I just sent the address round for people to come in if they wanted to join in when I found the details again just before I went into hospital last. We chatted mainly about how I was in hospital and what they were doing. I found the screen quite difficult to type on in hospital and it was easier just writing there than going round the different sites telling people how my day had gone and it meant I could keep in touch everyday. It was too private really to put up in Blogger as I was feeling very ill at times.


So ... yeah .. four blogs here: A Place in Thyme .. Blogging Lemuures .. Dancing in the Dark With The Stars All Around .. and .. Drifting through Space.

Doubt if I'll forget where these are!!!!!

One diary on a different site which is Friends only. I've been thinking of making it open to people who've got a diary on the site if other people who've written in the comments don't mind .. if not .. I'll start a new diary there cause a diary I've been reading has just gone Friend's only and I'd like her to add me .. only trouble is because my diary's friends only she's never read it.

I've also said now .. not only will I let people know how I am everyday but I'll try and write in the mornings too soon after I get up .. well, before midday anyway!!! Well .. you know me ... always late!!!!

The wind reminded me of mum and my journals and blogs .. not just because of the LJ but also because when I started blogging a lot of it was about climate change and mum had noticed that it had got windier twenty or so years ago. She used to say there always seems to be a breeze now .. and there did. I noticed the change too and it became very obvious later on when my sunhats used to get blown off quite a lot.

Think I was awake last night cause I still have a bit of a cold. So many people are saying how tired they are. Me too which isn't surprising considering my illness and all the medication plus my colds. Anyway, started meditating again early this morning as they say that meditating can offset lost sleep.

Going to start a kind of timetable for my day too so that I start to get more done.

Bit sleepy

Up, fed and medicated. Still rather tired .. seems lots of people are at the moment. Didn't feel as queasy as I did yesterday morning though.

It's been ok .. um .. today

Had quite a good day bar the illness really. More hugs 'n' no problems!!! I pottered into Head too and bought a couple of books. Picked up Nelson Mandela's book and Ebony and Ivory started playing then mossied off to the shop that sells the packs of fruit and nut and Where is the Love was playing when I went in.

I have indeed bought the last of those two books in The Works that I'm going to buy. There's only a couple left now anyway. I know I'd said that before .. though not on here I don't think .. but that's it. I want to give a couple more away. We differ here and there in how we interpret things but then we're not clones of each other so that isn't surprizing.

I picked up the Dalai Lama's book The Universe in a Single Atom from Head too .. how science and spirituality can serve our world which I'll get round to reading eventually. Decided to get that instead of one of Eric Hobsbawn's books. As I've said I used to refer to myself as a sort of Buddhist and while I've never been a Marxist I'm sure that Eric Hobsbawn's books would be very interesting to read. I've read one I think though it's a long time ago and I can't remember which one. Think I mentioned that I'd not been a Marxist when I was talking about feminism back in the day. There were quite a few people who were as Marxism was something that a lot of politically minded young people on the left were interested in finding out about then. I had an aunt and uncle who were though.

Anyway, I've going off to sort out dinner now. Well, it's in the oven but it needs swirling round a bit and then putting back for a while.

Gud afternoon

Back from me Wednesday shopping trip. My back!!!!! Things are well and truly on the move but it's getting a bit painful but at least I know what's happening. I walked round Sainsbury's without me stick or the trolley which was pretty good.

Think we were both rather tired today ... me, cause I went to bed too late as usual. I woke up early too .. just as well really as the district nurse came early to see to my back. I wasn't sure if they were going back to seeing me three times a week this week or next. Obviously it was this week so just as well I was up and ready rather than asleep. I keep on saying I'll turn in earlier .. think I've made it a couple of times so far.

I suppose all the new movement is tiring too but it's good to be doing it. Just have to put up with the extra aches and pains .. some of the pain's very sharp when things first move but that's only momentarily and it often comes with a kind of burning sensation. Afterwards there's a duller deeper sensation. The pain breaks through the amount of pain relief I'm taking at the moment .. I can have a bit more than I'm taking at the moment and think I might while this is going on. Dunno yet though ... see how it goes.

Up, fed ........ etc ....... etc

I was slightly queasy this morning. I knew it!! Just sat round waiting to sneeze ... and I did. Two little sneezes but no sort of after spasms which is good.

I'm feeling much better now. I had a few hiccups this morning too so maybe they go with this cold as someone I know had them with theirs a couple of days ago.

Right, I've got to get a move on.

Walking round town

Quite pleased with myself!!! I walked down to the end of town and back again today. I had to rest a bit and getting back wasn't that easy because I'd bought some packs of daal and spices and the papers. But I made it.

I'm going to start making daal and bean curries though they're going to have to be mild for now. I've some tins of beans here that I've got from Sainsbury's on the Wednesday trips.

I'd decided to walk or rather I'd decided to try and see if I could walk. I've not walked that far very often recently .. but it was ok. When I got back my breathing was out of kilter for a short while but that wasn't surprizing considering the changes that are taking place at the moment. It was cold too and I don't know if that would affect my breathing. Someone said that it might do last time it got a bit nippy.

Things certainly do seem to be improving. I know my health isn't going to go back to how it was but there sure is an improvement.

I was going to get a taxi back when I realised that I was going to have problems but there weren't any at the taxi rank and there appeared to be a few people waiting. Guess the cold weather might have been keeping the taxis busy. When I got back I was pleased I'd walked.

People get worried that I'll do too much but I think I'm keeping within what I can do. I'm not on my feet too much. At the moment there's more sort of clicking sounds as things are moving again. They are audible. It all might sound pretty awful but they're good and mean that things are improving.

Maybe out for a while

Right, just take my rubbish down and then go out. Not sure what walking'll be like today as there's been a bit of new movement again that's rather noticeable after doing a little bit of exercising.

I don't know if something else is happening too. It's strange .. your body can feel numb to a lot of sensation while there being a lot of pain too. I think I wrote about this sometime ago. It's because of there being two different nerve pathways or somethibg. Can't quite remember .. but I think it's all written about here somewhere. I think it's something that people with MS often experience. I'd written about it because it was something I shared with someone in hospital on one of my previous visits to hospital. And with someone on my last visit but I already knew about the condition by then.

I think, with me, that it's my muscles moving more whereas previously they'd been so rigid. It's not down to the pain relief as I'm still taking that. Talk about achy. I'd hate to think what it would be like without all this pain relief. I've been a little bit sweaty today too at times.

I can feel my lungs working more too. Actually, yesterday I could feel movement at the top of my head where the muscles were starting to move again. Hopefully that might mean that there'll be more chance of healing too cause if could mean that the blood flow'll be better and therefore any nutrients etc will be carried around the body better than before.

Anyway, I'll see what I can do. Take me bit of rubbish doon and then I'll see if I'm up to walking. Someone told me that there're some nice new seats down the end of town. More the better I guess .. though you don't really realise til you need them yourself. The sun's out at the moment .. bit different from when I got up this morning to see the cars frosted with white.

Tuesday!!!!!!

Woke up to a rather different day today. Wet and a bit colder, Still, looking at the long range weather forecast it's going to warm up again soon enough.

Played my best game of one of the words games on one of the sites I go to last night. Was ok this morning too. But .. on the mahjongg game .. I really fine the pisces version difficult. I got what must've been my highest score for level one and then knew that I'd be having problems cause level two was pisces. I think it's because I find the different layers of tiles harder to see on that layout than the others.

I think I might still be a little sniffly. Well, I thought so when I woke up this morning but it's hard to tell with me. Obviously the mornings aren't too good .. though not anywhere near as bad as they used to be. Used to take me ages to tend to all the various problems the illness had caused over night. I was like the young girl here with the illness similar to mine who took three hours or so to get ready in the morning.

I'll have to go back and find out about that again .. ah, yeah .. it's April 10th 2007 in the Dancing in The Dark blog

http://dancinginastarlitnight.blogspot.com

"Back again"

Guess that was yet another late night.

Trouble is now if I go to bed earlier it throws the ibuprofen and paracetamol out a bit for the day .. maybe I'll just sit around without taking them for an hour or so. I'll take the MST and Oramorph earlier. So, then, I'll have an extra pill taking time. It's just all so complicated. I take 42 pills a day plus the one I take once a week .. plus the mouthwashes .. steroid and antiseptic .. plus the Oramorph.

Not forgetting the Fortisip!!!!!!!!

Never mind I'm sure I can sort it out. If I want to keep the pill taking as it is now I'll say midnight's the latest to turn in. I like to start taking the daily pills at around eight. I can take some oramorph at night if the pain wakes me up. And I have the MST kinda working there in the background but that's worn off by 6 to 8 in the morning depending when I took it the evening before as it gives twelve hour slow pain release and I usually take it with the third batch of daily pills with the second lot of Cellcept etc.

I'll sort it out I guess!!!!! But I don't really want it to become anymore complicated than it is now.

I

But ........

On the other hand I'm still not doing much else. The books are here but remain unread .. but I'll start sorting it out soon. I just get to feel so tired and the time goes so quickly. I'm sure once I start learning and talking to people about it then it'll be ok.

Anyway off to do dinner.

OK!!!

Today was much better than I expected it to be. After yesterday's pain I wondered how difficult things might be today. Going by previous experiences it could've been very bad for a while again but I've been ok. There are times when even the amount of pain relief I'm on doesn't stop breakthrough pain. I don't really want to be on any more though.

There's the problem with pain and breathing comfortably and, ofcourse, protecting my skin cause it's still on the delicate side. Not as bad as it was .. I don't blister like I did though I still have to be careful. I guess I'll know more about that when I chat more with other people who have this condition. I think it can go into some sort of remission with treatment and some people can have it under control with little medication. Still I'm not there yet though things are much better than they were. I'll hopefully be on much less medication for the condition than I am now.

My cold's seems ok. I met someone today whose on the same kind of medication and she has a bad cold. Hopefully though things'll be ok. I didn't develop any secondary infections .. as I said I never have since I developed this condition and have been on this type of medication. Obviously there are two problems .. the illness itself which makes my skin fragile and therefore more prone to infection and the medication I have to take.

I will phone the homeopathic people up. The general feeling towards alternative therapies is that they'll probably help more with the side effects of the orthodox medication than the illness itself. There's no harm in asking around though. It would be as a complementary medicine though not as something used as an alternative to orthodox medicine.

Anyway, today hasn't been as bad as I thought it might be. There was quite a bit of new movement that was very evident down my left side yesterday.

I think the cushions from The Works might be making things a bit easier. Early days though. I'm seeing the tissue viability people again soon and I'll talk to them about the problems. The district nurses are keeping an eye on things. I see them twice a week at the moment.

It's a difficult illness both from living with it and the treatment side .. though it can go into a kind of remission where it can be kept stable on a small dose of medicine .. and some people can find that they don't develop any more blisters etc.

Monday

Up, fed and medicated. I dozed off properly yesterday evening and ended up having a fortisip drink instead of a cooked meal for dinner. I really felt tired when I woke up again.

http://www.nutricia-clinical-care.co.uk/images/pdf/FSP_datacard_2006.pdf

There'd been a lot of new muscle movement during the day and while this is very good it'd left me feeling exhausted.

I seem to be over that today though there's been more new movement this morning.

Up etc!!!

Up, fed and medicated!! Had a reasonable night's sleep last night.

Saturday

I'm enjoying myself on the games sites too. Don't know why I didn't head over earlier. Started aafter my two week trial with Lumosity. It's a lot of fun though I'm not a paying member and won't be until I go back to London.

Sneeze!!

I have a lot of favourite games I guess .. they change all the time,

Part sneeze!! Not so good that time but recovered quickly!!! It set up a bit of a spasm. Didn't know that was what was happening until one of the nurses told me. I'm ok again now. Took about three or so minutes to settle down and it wasn't too bad. I was ok once I'd sneezed properly .. even though it was just a tiny sneeze.

Guess I'll concentrate on my exercises more too. I was saying yesterday that I sometimes hold back cause I know there's going to be more pain though at the same time I know that the sooner things are sorted out the better and doing a few exercises is the way to go. Actually it's really good .. things have improved a lot since I started doing the breathing and stretching exercices but I should imagine that it's going to be difficult.

Saturday

Went out this afternoon .. though not for long. Quite a few people sneezing .. feel as if I've one lurking too .. though I feel much better.

Got some food in and a couple of those soft cushions that they're selling in kinda tote bags at The Works. Thought they might be good for my back. Worth a try. I could have a special mattress to sleep on from the hospital but these might be just what I need. I'd been looking at them for a long time thinking that they might help but couldn't make my mind up whether to try them.

Still drifting in and out of very short naps. It's a combination of my illnesses and the medication with the added cold. But I don't feel too bad all things considered. I know the doctors were very worried for a while but not as much now.

Moving hasn't been so easy today as the muscles are definitely on the move. Youch!!!! Doesn't help to be carrying heavyish shopping. Well, it does in some ways cause it's pulling things around and that's good. It's just that it doesn't feel too good. Still even though the movement is very focused around my ribcage it's not causing as many problems as it was. I had to sit down when I got in but wasn't as wheezy as I would've been once.

I bought about eight of those books from The Works .. have given away four of them, the other four'll be going back with me. I'm reading about a chapter at a time and sitting thinking about what I've read.

Pause for phone call ................

Back again with dinner on!!!!!!!

Time sure flies .. sorted out some medication before .. can do the rest now. Have done.

Tomorrow I'll try and start sorting things out again .. flat .. work etc!! Today I was dozing too much .. inbetween game playing. Just too tired to do much else.

Up ... etc

Up, fed and medicated. Think my cold's on it's way out. There was quite a bit of muscle movement last night which is good though it came with a bit of very noticeable breakthrough pain.

A day in

Stayed in .. on line most of the time .. on the forums as well as playing some of the games. Suppose I should chat more on the forums than I do at the moment. I just feel so tired though and as some of the things talked about are really important to the people involved a very bleary me isn't going to be of much use.

I was going out but I sneezed and as I wasn't feeling very well because of this cold I decided to stay in. Chat away on the phone a bit. Not much about myself and more chat from the other people than me. It's been better to stay in. See how it goes tomorrow.

There's so much to read on some of the boards. It's nice having a variety. I often pop into the Bag's Relationship's forum early on and then potter around others for a while in the day. I was talking about medieval influenced towns with someone today and then realised that one of the posters who's on one forum quite often hasn't been around for a while. She used to be interested in dressing up and jousting, though she didn't talk about it much, so I had my memory jogged when talking earlier and realised that she's not been around for a while. Well, nor had I much .. suppose I should more really. I haven't been posting much lately .. a bit on the boards and on this blog. That's it really. A couple of posts on t'other blog about my health and going back to London and a few replies on other people's blogs. Well, that's all it's been for months .. and at times even less.

It's not just tiredness that keeps me away .. though, today, because I've a cold I've been dozing in and out of sleep as bit. Guess playing mahjongg has kept me busy. I enjoy playing regardless of whether I remove all the tiles or not so it doesn't matter how sleepy I am.

Anyway .. guess I better go and do dinner.

Zzzzz again

Yup, I've got a bit of a cold. I felt better when I got up this morning than I did yesterday but it's not lasted. I don't feel too bad though all things considered. I'm sleepy and keep on dozing off for a while which is probably a good thing.

I am tired ... but

Didn't feel too bad as the day went on but maybe I am getting a cold. I'm tired. Get dinner .. do my meds and I'll probably just settle down with a book for the rest of the evening. I don't know when it's best to turn in really. I guess about 12.00 or so to fit in with the pills. Start taking them about eight in the morning.

Got to get in touch with a couple of people who've got back in touch with me. I was hoping that they would .. and they have. One goes back to the Birmingham days but she moved away and we got out of touch and the other I hoped hadn't gone for good and hoped she'd turn up somewhere again. Wasn't sure how but she has .. which is really nice!!!!

Waves!!!!

Bought a couple of second hand books. One'll be very intertesting and useful as someone I know is interested and sometimes talks about it's subject and I don't know that much. And a very interesting book on relaxation .. which I might need when I've finished the other!!! Bought them both from the Oxfam bookshop. Also found a book on the 60s which should bring back memories. There's a table book of photos of the early days of the Rolling Stones which is so good it brought the times flooding back into my memory. Probably, for me, one of the most evocative music books I've seen. I was browsing through a copy in The Works a couple of days ago and was really surprised just how evocative it was for me.

Anyway, off to do dinner.

Think I might have another cold

Don't feel so good this morning. I wondered if it was due to the steroid reduction when I first woke up but I doubt it as I've left a dose out occasionally because I couldn't remember if I'd taken them or not. Usually when the phone had rang while I was sorting my morning pills out so I'd left them rather than take the risk of having too many and I'd been taking a much higher dose then. And I'd felt ok the next day.

What happened to Heath Ledger is the reason I'm so careful. It'd be very easy to do myself a lot of harm if I took too much of some of my medication or mixed it with other things. As I said I mark everything down when I take them out of their containers and then again when I swallow them. And I write down how many I should take next to the name of the medication when I'm writing it all out. I'm very careful to make sure that I mark off the right boxes for each as I take them and I write down the time. Might seem a lot to do but it's much better than getting it wrong and making myself ill.

Think I'm probably coming down with another cold then. There were quite a few people sneezing in the hospital when I was there on Tuesday so it wouldn't be surprising if I've picked up a cold. I'd hoped we'd all got the same one but maybe not as I felt a bit whoozy when I woke this morning and I was feeling some extra aches and pains and my eyes were a bit watery though their ok again now, Have to wait and see.

I'm rather prone to catching colds because of the steroids. I feel a bit better than when I first woke up.

Wednesday

Was driven out to get the shopping today as usual. She's strong .. she managed to carry some of my medication which is quite heavy too. Guess I'd've lugged it all once too but it just isn't possible right now .. to say the least.

Me .. well, I carried two bags of rubbish downstairs .. but they were just bags of wrappings and weren't heavy .. though they were followed by a heavier bag. I wasn't too puffed out after the second one went down though my breathing wasn't too good coming back up the second time. First time I was more or less ok. A few weeks ago I wouldn't've been.

I did carry some of the shopping from the car. I usually take a little the heavier stuff to take some of the load off her as well as the light but bulkier things It's not very far to walk from the car to the flat and I'm ok.

Had a nice time out too. Lot of chatting about a lot of things.

Quick call back to London when I got in which reminds me I should give the hospital a bell this afternoon.

I bought some lovely lettercards in the hospital yesterday .. think a shop had closed down and donated their left over stock to the hospital .. they were 50p for a box of twelve. I bought some with Walt Whitman on them and some with pictures of musical instruments. Could use them to write to someone on or use as birthday cards. I think they're lovely.

I still haven't done anything for the chapel .. it's down to tiredness. They offered to get a magazine in for me while I was there which was nice of them. I said no cause I don't read it myself even though that would've been no problem picking a copy up in London. Maybe I should've said yes though as it would've been there for other people so that they would've felt welcome. Maybe I should donate a book!!!!!!!!!

I'm still not listening to much music. I can hear it. My hearing's much worse when I'm walking than if I'm still. I think a lot of people, especially if they've tinitus experience the same. I just don't think about it much at the moment .. guess that's probably down to being so sleepy at times.

Zzzzzzzzzzz

Dozed off early last night. I'd been chatting on the phone and had thought that I'd start structuring my time more so turned the computer off and went to read. Still reading the same book .. I'd really wanted to see if he cited some verification of what he said .. he had .. still want to read the rest though. Anyway, I decided to have a rest before reading and dozed off.

Woke up later to get some pain relief, spent an hour up and then went back to sleep again waking up at about eight this morning so that was a fair amount of sleep.

Must have been dreaming about the bone sparing pills the first time I woke up as that was what was on my mind. That'll be taken on Sunday morning. Guess they might've been on my mind because I'd been talking to someone else who takes them a couple of days ago who was with me in a queue and then they'd been mentioned at the hospital yesterday. I very rarely remember dreams .. that wasn't the most interesting to wake up in the middle of but I guess it was relevant. Much prefer the musical ones to the medication ones!!!!!

Started the new dose of steroids this morning. More pills to take as they're a different strength .. 2.5mgs rather than 5mgs and with the trade name rather than the generic drug name on the containers so it all seemed rather different this morning.

http://en.wikipedia.org/wiki/Generic_drug

To the hospital

Went into the hospital this morning. Have had a very small reduction in the steroids. They're down 2.5mgs a day.



Left a pressie for someone.



I'd seen the woman I bumped into in Marks again yesterday .. though had followed her out not realising who she was as I was walking behind for a while. I still think I'm still not feeling well enough to go out in the evenings for a couple of hours. Going to the hospital has made me feel very tired. The muscles are moving quite a bit and I think it's that which is tiring me out so much.



Gosh, the sun has been warm today. Noticed that the japonica was in bloom at the hospital and that there's blossom out on some of the trees. Not surprising seeing how mild a lot of the last few weeks have been.

Monday evening

I thought it might be quite difficult if I went out today. I was a bit wheezy at times on the way back but nothing like I thought it might be. I thought the new movement might make breathing a lot harder while my lungs got used to the new changes. I was ok though.



OK .. maybe I shouldn't've carried as much as I did back .. though it's good exercise .. but I was in much better shape when I got back than I would've been a couple of weeks ago. I didn't rest for that long either.



Someone I I know had a bad chest infection a couple of weeks ago after getting a cold. It surprized me that I hadn't developed one too because of the medication I take but I didn't.

Off to Warwick!!!

Just as well I phoned the hospital. I'll be seeing them tomorrow.

My back's quite painful today because of the movement from exercising. The pain used to be worse around my stomach but now that I'm moving the muscles more around my chest it's becoming more painful there and the upper part of my back. It's strange feeling the way my breathing's changed too. But, still, doing the exercises should make it all easier in the long run.

Back to London

Sadly there have been casualties in the aftermath of the fire at Camden. six people were injured, one badly, after the top of a bus was damaged going under the bridge.

I hope all will be alright.

I'll soon have to be getting in touch with the local medical people there to get my appointments with the hospital and a GP in London. I was talking about it today and it really is essential that I get this sorted out in advance so that when I'm ready to go back they are ready for me because of the seriousness of my illness and making sure that I have all my medication.

I'll be going to St Thomas' because they have a specialty department that covers this type of illness.

Actually got to phone Warwick so I suppose I better do that now.

Going back

Did my exercises yesterday. I'd only done the Qiqong one a couple of times. I was very tired and had thought of walking as a good enough exercise.

It's funny in a way walking around town.. I know of people through other people but haven't much idea of what some of them look like. Well, not enough to be sure if some of the people are who I think they might be. I'm pretty sure I was in a queue yesterday with someone I "know" through being told about them.

There're people here that I've known like this since the 1970's.

I remember the Corn Mother and an Indian shop in the same street that sold lovely ear rings.

I've said that I'll help/join in with something here which means I'm going to learn something new. Though I doubt if I'll be doing much til I've gone except learning. It could be fun and'll certainly be a good thing. I was going to before but me health got in the way.

Pity that you can't just spread your wings and fly though I suppose that would be no use to me either or that I can't just wake up tomorrow and find that my body is a whole lot better and I could just go (back the usual way). Think my astral travel book is on the bookcase next to me bed there. Not that it'd be any good getting me down to Marylebone Station .. but even if it was it's at the wrong end!!!

Camden

Woke up this morning to the news of the Camden fire. I'd been thinking of Camden as I thought about London. When I used to be able to get back to London for a day or two I often used to go there for a while Would dash over to Fresh and Wild to pick up some prepared vegan food and then just have a potter around and potter back to Mornington Crescent tube looking in the charity shops as I went. Generally on my way back to the station to catch the train back here. Fresh and Wild is near Camden Town tube rather than towards the Chalk Farm tube station.

So glad that everyone is safe.

Yeah ......

Going out was reasonable today. Not the battle to get back that it'd been in the past anyway. I guess things might have got to a stage where most changes aren't going to be as difficult to manage as they were. Though havi8ng said that I'm sitting here with my breathing a bit puffed after getting up to get me pills. I guess it's just the breathing settling in after being out though because now I have to adapt to the changes that'll have caused. Obviously walking around moves things a bit too.

Didn't do my exercise this morning either but'll soon get down to that after all it doesn't take very long. I can feel how things have changed since I've been doing it. Guess I wish I'd started earlier.

Someone I know had a bad chest infection a little while ago and gets a bit wheezy .. don't know if it'll help him too with his problem.

Obviously I do any exercises gently. I noticed that some of the exercises in the book resemble exercises that you do in physiotherapy.

I'd already added the Tibetan Relaxation book from The Works. I said to someone that it looked like an excellent book but I hadn't really felt like doing anything much so hadn't started doing anything from it. For now I'll work my way through what I can do from the Yoga Bliss book.

My walking was a lot better today. There's still a lot of pressure cause my muscles are tight but at the moment it's not as bad as it was.

Up, fed .. etc.

Up, fed and medicated. I wasn't quite so puffy as I usually am when I woke up this morning which was quite a surprise. The pain and pressure weren't so good but I could feel how things had moved over night and how there was more expansion as I breathed . But, still it wasn't as bad as it could be. The expansion thing is very uncomfprtable though.

I was thinking last night that before I'd get a day or so when things felt better then the muscles would move again and the pain and breathing problems would get worse. This time it's not so bad at all ... well, relatively speaking!!!

I rested yesterday as I pottered around town. Probably for the best I guess and it does make me feel better however I am. I'm still tired though not as bad as I have been. One of the nurses I see said there're a lot of bugs around at the moment and while I've been anything but cold free I've not developed any secondary infections with them.

And, yeah ...

And, I guess, I feel that coming to believe that there's more to life than living til you die is a kind of present for choosing to stay with her rather than high tailing it back home which would've been the easy option. And I sure do believe that now.

And it also seems to make sense. The creation of something out of nothing in the very first instance whether it's looking at it through scientific eyes or through religion or a mixture of both is far, far more complicated than the thought that there is life after life. Much, much simpler.

Leaving ......

Obviously been thinking about mum too. I looked after her til she went into the home and then I stayed because she didn't want me to go really. She was very ill and what she had to go through wasn't pleasant. I spent quite a bit of time over there with her and was pleased how they treated her. That's why they got the prezzies. They tried to give her as much freedom as was possible in the situation while still caring for her.

I was starting to feel very tired though which I guess was because this illness had started wrecking my body though hadn't shown any symptoms that could lead to a diagnosis. And then tiredness in that situation wouldn't be surprizing anyhow I guess.

Still I'll be on my way back soon. The exercise I'm doing seems to be helping a lot. Be choosing another to add to it soon and be trying some of the breathing exercises. Suppose I could do the alternate nostril breathing now as I already know that one. Not sure if it's in the book but I learnt that from Richard Hittleman many years ago .. back in the 70s I think.

Friday!!!

Walking is getting easier I guess. So far it's not getting as difficult as it did after a day or two when things had settled for a while. Made me think back to writing about taking me dog down to Battersea Park when I was there as I logged in here .. guess people could be taking me for walks there when I'm back.

Well, not walks down as much as walks round there. I'm not expecting things to have improved that much. But, still, things are getting better as far as walking goes and that's for sure. And my auto immune illness is being kept at bay with the steroids and steroid sparing pills. My neck is amazing compared to what it used to be like .. well, just some slight marks there now rather than those blisters that I used to have.

Anyway, hope to be able to make it up to the common. Not too far.

Oh, and there'll be no more um ... pottering up ... the stairs in the tubes being sherpa to me mates as we climbed the longer stairway at Goodge Street etc. How I reminised thinking of being there pottering from tube to tube and a pottering down here and a pottering up there. Ofcourse seeing me puffing up and down the flights of stairs here reminds me of some of them on the longer twirly iron stairs in the tubes. If you're not used to them or very fit they can be "slightly" tiring to climb.

Me public transport journeys are going to have to be planned in advance until I'm a lot better I guess. There're main line stations around where I live too so it should be ok along with the buses.

I bought The Good Back Book from The Works too. Goes with the others I guess. Only 99p too. So many people seem to develop back pain during their lives. Mine is rather different .. but you never know.

As for the homeopathy remedy someone has given me a number to ring to ask about it because she said it was a very large combination of remedies and she as a classical homeopath didn't work with so many all together. It's worth a try.

I think I'm feeling a bit better anyway. I'm reading more again though I must admit I'm more on the bag than in me books a lot of the time. There's so much to read there that I have to limit me time but it sure has been interesting the last couple of weeks. Still I'm reading the books too. Iguess the ones I've bought a few of from The Works will always have a copy on my shelves. The others'll be given as gifts or lent out. I met the lady I gave the first one to a couple of days ago and we agreed it was nice to have a copy around. Neither of us have finished reading it but I read the most interesting bits for me early on. Well, I say the most interesting bits well they were for me .. because they were something that I wanted to know. I'd read another couple of his books a couple of weeks before .. they really started me reading more books again .. I think if I hadn't I'd've finished this one a bit faster. I've given one of those away too. These I'll keep a copy of though.

Taken me meds til the nighty night time pain relief and about to do dinner.

To Sainsburys .. by car!!!!

Back in after going off to Sainsburys to get some shopping. She's used to me buying rice cakes and stuff like that and this week came back with some for herself. A diet looms!!!!! Just a little one though. Rice cakes and crispbreads etc are on the menu.

It's so warm out there today. You don't even have to add for the time of year really .. though ofcourse it is. I have to be a wee bit careful I guess though we went by car over to Sainsbury's naturally. Me early morning walk had been over to the main street here and hadn't really got me hoping that I'd be mozzying up to Sainsburys and back complete with shopping.

Though it would've been nice. I wouldn't even if I could ofcourse.

Sighs deeply and promises that fingers are NOT crossed.

Out early

Walked to the main street and back without sitting down for a rest this morning!!!!!!!!!!!! Ofcourse, as I've had to learn, this doesn't mean that I'll be able to do that again for a while. Depends on where the muscles have moved. Last night I was going to say how difficult moving the muscles is .. well, it is and can be very painful when the pain breaks through the morphine etc. I wasn't so out of breath when I got back as I often am either.

Bought three of the books at The Works. Guess I should've done this to start with. Though I didn't think I'd want so many. Carrying them back without feeling awful was a novelty too!!!

A good week really!!!

Quite a week really I suppose. I'd expected to come down with a nasty cold as someone I was with last week had one. She thought she just had a migraine but it turned out to be a cold of the mucho sneezeroo variety. I caught a cold but haven't been too bad at all. It's made me tired and I've sneezed a bit .. and didn't wretch once like I used to. That's about all though.

It's a strange illness this one!!! The wretching was because I used to go into spasm and that was more to do with the bone and muscle problems than the auto immune illness directly. I've found out that thyroid problems can be auto immune illnesses too. Mum had an under active thyroid for a few years so I'm not the only person in the family to have an auto immune illness.

Auto immune illnesses affect women more than men. The one I have tends to develop in people over 50 while an illness like Multiple Scelrosis will often develop much earlier on. Every person I know who has had MS has developed it in their late twenties or early thirties. It happens when your immune system attacks your own body .. all auto immune illnesses are a result of this happening .. Apparently I have a strong immune system which could be why my illness has been so resistant to treatment though things are ok along that line now I'm pleased to say.

No one knows why auto immune illnesses happen. There could be a hereditary cause with mine as it's more common in some parts of the world than others. It does sometimes happen as a reaction to some medication but that wasn't the cause here as I wasn't taking any.

I know there's at least one person here who I haven't met who has the same illness but I'm not related. Know someone else from here who's grandma had it many years ago. No one else in the family's known to've developed it so even if someone in your family does have it there seems little chance of anyone else developing it too even if there's a susceptibility towards it in your genes. It's very rare. And obviously, just like all auto immune illnesses, it's impossible to catch as it's a developmental illness. There's no one in my family who's known to've had it except me. It's thought that it could sometimes result from sun exposure too. I'd wondered if mine could be the result from environmental concerns some time ago and blogged about it. For some reason or other, lupus which is another auto immune illness vaguely similar to mine is becoming more common in young women in the Western world in recent years and I'd wondered if there was any connection. Lupus tends to develop in younger people, my illness generally in middle or old age. It affects both skin and joints. It's strange though, one of my big toes curved inwards for a while when my illness was in a stage before it became even remotely obvious what it was. It's now gone back to how it was before. My illness isn't supposed to affect the joints.

I'm going to try the homeopathic remedy. I can see why the various ingredients have been included. Maybe it'll help .. maybe it won't. It's worth a try. My illness was treatment resistant for a while with conventional medicine as well as me reacting badly to some of the medication to start off with. There's The Royal Homeopathic Hospital down Great Ormond Street which I might ask my doctor in London to refer me to when I get back. She used to be keen on the hospital so I'll ask when I'm back there.

Met the woman I bumped into in Marks the other day again. She's really nice. I was a bit more tactile this time. She used to work in the medical profession so knows what's going on with me!!!!! She'll be getting the book!!

It seems to've cheered me relative up no end!!! Talking about books the Yoga Bliss book seems just up my street. I'm doing an exercise from it twice a day now. It's one called Figurehead, probably because of it's resemblance to the figurehead on old sailing ships, and seems very good for stretching out the chest. I noticed that there was a change. The book also is good on breathing exercises and meditation as well as the yoga positions. I've got one fer me relative too for a future pressie. It's only £2.99, reduced from £6.99, and could be something he finds useful and enjoys. Guess quite a few of the people he knows'll enjoy it too. I hadn't heard of the figurehead pose before. I haven't tried anything from the Meditation Bliss book yet but from just flicking through it that looks good too. I've been pottering back in to see if there's anything else to read along this line but I think these, for me, are the best ones there. As I said they seem just up my street. I'll be picking out another exercise soon.

emphitin

The homeopathic remedy's called emphitin and is a dilution of 10 homeopathic remedies mixed together from what I can see.

Saturday

Spent the rest of my "get well" pressie today. I'd bought Zuma and a science dvd earlier on and today I bought some more books from The Works .. Yoga Bliss, Meditation Bliss and a book about natural pain relief. I also bought yet another one of the two books that other people've been reading cause I'd always like to have a copy around for myself at the moment. I lent one out earlier on this week and thought it is nice to have them to lend. I'll soon be making the little booklets too that I said I'd do ages ago which'll be about my experiences for people. Anyway I love my new books.

I was wondering whether to go out tomorrow after meeting the lady earlier this week but really I think I'm not well enough yet. She said she'd tell everyone she'd met me and I said to say that I still have all the prints and paintings. Actually I might like a few more to take back to London with me .. £2 a print with all the money collected going to help. Can't be bad. I won some of mine in free raffles too!!

Actually I guess I don't mind me friends hugging me but I'm not someone that hugs outside of family generally. Tend to back pat a bit like Shaun. When me skin layers were busy separating a lot I didn't like being touched at all because I was afraid I'd pick up some kind of bacterial infection. I didn't and even in hospital I managed to stay lurgy free. My doc says I have a strong immune system which makes it difficult to treat the illness though it's much more under control now. I don't know how the illness'll pan out. It's rare .. though not as rare as someone I met in hospital's brother. He has one that only three people in this country are known to have!! She and I are staying in touch. His illness is related to mine though mine isn't as rare as that. Mine is rare too but not that rare.

I have to be careful not to boost my immune system too much. I was reading about melatonin yesterday and found that I shouldn't take it as it could make my immune system stronger which isn't a good idea with my illness as my immune system will then start attacking the substance between the layers of skin with even more vigour.

There are quite a few auto immune illnesses. I don't know which is the most common but rheumatoid arthritis and multiple sclerosis are well known ones. Apparently thyroid problems can be too.

I've just found out that there's a homeopathic remedy for my illness too. It's worth a try. It was hard enough getting it stabalized with conventional medicine but it's still worth a go. I'll have to ask first but I don't think homeopathic medicines are contra indicated in the same way as herbal medicines can be. But still must check before I add anything else to the long list of medicines I take.

Zzzzzzzzzzzz or zzz

I turned in much too late last night and am really tired this morning. Kind of defeats the purpose if I stay up late but then the next day I'm too tired to do anything much!! Sort of spend the whole day tired out just for missing three or so hours sleep during the night. I often feel better in the evenings as the pain relief is doing it's job pretty well, especially after the evening MST and it seems a shame at the time to go to sleep but if I don't I feel really tired the next day.


As far as the sleep paralysis goes I was fine. I did wonder if it'd happen again but not to worry if it does cause now I know what it feels like there's no need to worry because it's harmless. I know too that it sometimes it can go on for several minutes rather than the 30 seconds/a minute that it happened to me. Best just to relax and see it out or try to blink or just move a finger or something to get moving again. Fortunately knowing about it makes it a lot less worrying.

A couple of days ....

I tend to spend more time listening and reading than writing and speaking these days 'cause I'm so tired a lot of the time. Anyway, I spend so much time dozing that I really don't have much to talk about day to day. Well, dozing, playing Zuma and reading a little.

I'm slowly sorting things out here so that when I'm well enough I can go home .. things are improving but it sure is a slow process. My friends have been great though. I mean I have a selection of disabilitating illnesses now but they're fine with it and I get treated just as I did before .. though I amazed everyone the other day by saying that I was missing human touch because I hadn't been one for touching much I guess. Then, as if my wish had been heard, someone I knew met me on one of my meanderings to the main street here and there were hugs galore.

I wouldn't let people touch me when the skin illness was very bad for obvious reasons .. one of the common causes of death from the auto immune illness is through infection so I guess things were pretty dicey for me for quite a long time because of the illness and the medication used to treat it. Luckily I didn't develop a single bacterial infection except for a bout of catarhh which disappeared with a dose of that honey before I could get it down to the docs for antibiotics. The honey is sometimes used on wounds to fight infection but I didn't develop any infections in mine.

I had a strange experience a night ago though that has left me feeling a bit disorientated. I had my first experience of sleep paralysis. Apparently a lot of people experience this at least once in their life time. It's quite frightening the first time it happens. You wake up but can't move your body. Your mind is awake but your body is paralysed. I had a feeling of heaviness around my chest too which is quite common. I guess it lasted about a minute which was lucky too as it can go on for quite a few minutes which if it happens the first time someone experiences this must be really frightening. I guess that I was lucky that I knew as soon as I could move again what had probably happened and just went back to sleep again. Though, I guess, maybe I should've phoned a doctor just to be sure in the morning. I left it til the late afternoon after people kept on saying they thought I should phone just to check.

Didn't happen last night and I guess might've happened now because of my muscle problems .. or .. just because!!