Tinnitus d'bagpipe

I'm slightly hard of hearing right now. I mean not too bad .... I'm ok but the decible level has to be raised a bit for me to really hear. I've not been bothering to listen to much music. Too tired, too deaf, etc, etc. So, a couple of nights ago tinnitus came along in the sound of bagpipes!!!! It was obviously this cold starting up around a slightly overused eardrum and the troublesome muscles moving round it. Seems the music'll get to me one way or another .. if I can't hear it that well, me eardrums'll create my own. Roll on when it's all sorted out.

Fortunately it'd gone by the morning. Thing I might listen to my cds again. I can hear but just not as distinctly as I could. The cold is muffling me one way or another. But me half an hour of ghostly one earred bagpipes certainly made me appreciate other people's music.

Think I'll go for a bit of American folk and country.

Oh, no .... we don't believe it!!!

Steve Earle and Townes van Zandt to the rescue.

Yup ..... I do tend to listen to the same things over and over again. Just like getting really immersed in the music for a while I guess. Maybe there's a slight sadness now because I can't really move very much but it still gets into the mind.

Dinner? I'm not too sure about. A couple of veggie sausages and a mild veggie curry I think. The veggie hotpot was good.

I've more or less gone off sweet things cept for a bit of chocolate now and then ... but not too much. Just as well really cause they don't go with my medication.

Oven's on now and it's early to bed tonight I guess. I'm still very sleepy.

Maybe the eye exercises do work

I managed to remember who did the progesterone research for PMT in the 50s. Katherina Dalton. She did research in relation to other effects too, primarily in relation to pregnancy I think.

I couldn't remember totally off hand. Claire Weeks name was there in my mind first but then I remembered it was Katherina Dalton. Amazed that I remembered either of their names .. but especially Katherina Dalton.

I hardly read anything she wrote and when I did it was very many years ago and I'm not sure that her name would've come that easily into my mind then.

I was very surprised.

Resiliance

Resiliance is the new buzz word at work in this country then. Guess it's missing around the place then if it has to be mentioned at all. Generally means the ability to bounce back. It's certainly been discussed for quite a long time as if it's something that's not working too well at the moment.

Someone said that I'm one of the most resiliant people they'd ever met. I said, to be honest, that I thought it depended on the circumstances. But that a lot of the resiliance I have just comes from experience. If you get out there and do things then you're bound to pick up coping skills and I've also learnt a lot from other people when they've told me how things they've done have worked out .. but I think that needs to be mixed with personal experience too.

Some of it would be genetic .. but I think experience and learning from that experience and other people's experiences helps too.

Must say that I don't feel very resiliant this morning as I've a bit of a cold.

Lists

Writing out a list of pros and cons about things can be a very good idea. Got to thinking about that after reading a forum this evening. Clears a line through the confusion sometimes or just can help you come to a quick decision.

Just at the moment while I'm feeling so sleepy I think that it'll come in useful a lot. Should I be doing this or that. Getting on with this or that. Just be giving myself a bit of help really.

Now, I should be turning in for the night. Don't have to write the plusses and minuses down for that situation .. can do the lists in me head!!!!!

Off I go.

Alternate nostril breathing then?!!!

Went down town for more groceries but this time I knew half way down there that I was too tired to be walking that far. Though I did it and carried my tinned veg and veggie meals back with me. Walking back was easier than walking down for some reason. You'd've thought it would be the other way round because of the shopping. But I stopped and rested twice going down, not at all on the way back. Not that easy but I managed it.

Hey!!!!!!

Someone suggested doing the alternate nostril breathing exercises while I'm going through this part of the illness and I think I will. Adds another five minutes of exercising time on to the rest!!! Nothing too strenuous though.

Snort!!! or rather count to ten.

It's good having people you can swap ideas with. When mum was very ill it was someone saying something and then me going to research it that saved her a lot of trouble and pain. One of the reasons I feel so grateful to the home. It was a minor connection between whatb they said and what I eventually discovered but their thoughtfulness started me on a journey to finding out a lot more which helped her. I've put far less into helping myself but I that's because I've been feeling so tired and ill .. but other people've been there with suggestions and info to help along the way.

Bit late but I'm just going to put me dinner on. Back again with about half an hour to wait. A ready meal tonight.

I still go over to read my thought of the day. It's a random generated thing and just makes me think .. I got two of the look after urself more over the last couple of days. Well, I'm doing me best. I'm eating well. I have a little exercise every day. We've talked about this and with the muscles problems, if I can manage it, it seems like a good idea.

Monday

Up and fed etc. Took the steroid sparing pills in with the pain stuff last night so that this morning I could have breakfast a bit earlier. I have another mark off book too now so I can mark off those when I take them first thing.

It gets complicated but not as complicated as if I start missing doses of the things out.

Still tired but as things change and the muscles move it's obvious why I should be at times. Every day is different now. Yesterday there were muscle changes that gave my right lung more of a work out than it's had for a long while. Very tiring as it's making the muscles on that side of the body work more as I breathe as they're being exercised back into being stronger and more flexible.

Remembered to get my lamp bulbs yesterday too!!!! In time.

.......

Up late but have done the steroid sparing pills etc., etc. Just having something to eat so I can take the steroids. Done and marked off. Have had the TENS machine attached to me back some of the time while waiting. I can't feel it as much as I could to start off with half an hour ago but that could be to do with the batteries I guess. It's there with the magnets but who's to know really. I have it so I'll use it.

Oh, yeah, and the calcium tablet to counteract the effects of the steroids as well. Burrows back into box. I prefer the lemon flavoured ones but me doc, looking after me health, prefers these!!!!!!! You're not meant to chew these ones. Just as well ... cause .... Yuck!!!!! To the degree that you know that they just have to be better for you.

He's on holiday. 'ow will I survive. I'll do me best not to revert back to a lemon flavoured calcium tablet lifestyle.

Ofcourse I now have to watch my vit D intake ... not too much. Though as you get older metabolism becomes slower and ofcourse the steroids slow things down too but with the calcium pills (+vit D) it's worth looking at what you're doing.

Right, off to clean me teeth ... ouch .... ouch ..... blah di blah!!!!!

Sigh.

Pain

Well, me friends are thrilled. I expect tomorrow will find the pain going through my body as it usually does. It's back now and I expect it'll be there when I wake.. It's a crushing pain because that's what's happening. Mum used to complain of something similar though I realise now it was nothing to the extent I have experienced it. And a dear lady who's now passed over so the actual feeling is not so unusual but there are differences in severity. There's more to it ofcourse because other forms of pain come in too but that is the main one but there are different pains that come along with it.

Again having cared for someone who has had a similar experience has prepared me to a certain extent and knowing the other lady. You know if they can cope so can I. Though I do realise that I am in rather a lot more pain than mum was at times. Dunno why because she certainly looked as if she should've been in more pain than me but I know from what she could do and how she reacted and what she said. But she did have the same kind of symptoms just a lesser form from what she told me about it and from what I gathered from what I could see her doing.

I think I might have a muscle illness contributing towards the pain too. I found out that problem and the illness I have sometime go together. It makes sense.

The last couple of days have veered a bit towards the severe other type pain a bit more. One of the things this has taught me is that there are many kinds of pain. I was saying to a doctor that I just had no idea before. There was no reason that I should have. It's certainly changed how I talk about it with people. Experience can certainly teach you a lot!!!!!! Flipping heck!!!! I am trying to pass it on to my wanna be doctor pals but it's difficult but they're very interested. Hey!!! I'll do my best. They ask me questions about it and I do my best to describe it.

I hope this works out for them. With the shambles that becoming a doctor here seems to've become I wonder if knowing me is such a good thing as far as career influence goes but we've talked through safeguarding that as far as possible too. They're great guys and I think they'll be great doctors.

Anyway I'm off to sort out me veggie mince etc. I went out and got some beans and veggie sausages rather than get down to the cooking this evening. Testing out the pain on walking too. It has got worse since I've been back but I know that this is going to be a very rocky road, very rocky indeed. It's going to get really bad at times still I guess but maybe I'll get some periods of relief now and again now.

It is bad again at the moment but I look upon what happened this afternoon/evening as possibly a sign that it might ease up some at least now and then.

I wish I knew what changed things today but I've written what happened down. There were a few bodily changes to start it off. My breathing for one. No noticeable changes when the pain came back though.

And I'm well aware that this is difficult overall but on we go. Not scared of the outcome if the illnesses turn out to not to respond to treatment but the pain sure ain't nice. And it's back.

But today has changed things in my mind a bit and has made me at least be determined to see if there is at least a solution to some of the problems. I'm expecting a natural one but, if by some chance, that doesn't come, then I'll be researching to see what else may be on offer. With virtually no let up I'd reached a point where I was beginning to wonder if there was a chance. That has changed.

Still .........

Bet it'll hurt like crazy tomorrow ... but still, that time today was some surprize.

Just for a while

The pain eased off a little. Shows that it might not be permanent. It was awful when I set out this afternoon. I mean bad .. regardless of the pain relief. But I went out again a bit later without having taken any more and it'd eased off considerable. Came back again to a lesser degree but it goes to show that it might possibly not be permanent by the time that part of all this has sorted itself out.

I was getting to the stage where I was wondering if I'd have to have my shopping done for me while it was at this stage. Not what I wanted but it was starting to look as if that might be how it was going to have to be.

Well, even if I have to it'll be with the knowledge that it might just be for a short period of time. I was starting to think it'd be the opposite so that half an hour or so has done me a lot of good.

Back taking my medication because I mustn't let the plateau of pain relief lessen because of a good half hour because that means when the pain comes back the pain relief'll be less effective. I have learnt my lesson when I've missed doses. It can be really noticeable.

Tomorrow I must do more sorting out then if I can. I don't want my head in a book or doing any art work at the momento. Too tired. But as for drawing I've pictures back in my mind which is something but the rest of me is totally zzzzzzzzzzzzzzzzzz.

Partly the illness, partly having to shove down this amount of pain relief. It's difficult to comprehend the amount I'm on and still being in this amount of pain.

Suddenly thinks .... it couldn't possibly be the magnets could it. I had put some on in the worst area. But, there had been a bit of movement because my breathing changed for a while. I wouldn't count on it though. I was reading a thread today on the bag where someone had used a magnet and was wondering whether it'd helped but then a day or so later had had to say that the pain was back. Period pains that time. I was hoping that she'd be painfree. Well, not just because I wanted the magnets to work but I wanted the thread to be a resounding success of painfreeness. I was left a bit reassured on that to some extent but nothing there that would help me.

Anyway I've four magnets stuck to me trying to sort out this pain. I'm not hopeful. It's not as painful as it was. It can get to the unbelievable stage at times. But it's still there and showing itself again.

I have got a fair bit of food in. All on the healthy side including fresh garlic as well as the dried stuff. People have said go and buy the big bags of pulses and spices but I'm afraid I'm just starting off with the frozen chickpeas and soya beans etc. I'll start with the rest later though I'll be grating a bit of ginger and garlic in.

Anyway, maybe it'll be coming to an end. I'm glad I've had to sort it out here. It'd've been far harder coping with the pace of life in the inner city. But on the other hand I'm used to it so maybe I'd've been fine. People were great when I was recovering from my injuries and I suspect if the same attitude was there it'd've bustled me along even if the pace of life was hard to keep up with while I'm like this.

But I was saying a couple of days ago maybe this has been better though I miss it dreadfully. Haven't any choice right now though til me cells get on the mend and the pain sorts itself out a bit more. Last time I tried the journey to London it wasn't fun afterwards and things are worse now .. though maybe on the mend.

Thanks to the two young people who helped me today after I had a spot of bother wiv me carrier bags. And to the woman yesterday who I had a great conversation with .... just when I needed to talk about things like that again with someone new.

So, even if tomorrow ain't good I now know that the pain mightn't be there for good at the level it's been and I tell ya I'd started thinking that way .. so today's been good in a way though for a while the pain had been tipping towards the worst it's been.

Maybe it'll be really bad again tomorrow but I now have that time today where it did ease off for some reason or other. It's not good again now but there was a change for a while today.

Just makes things look as if there's a chance that they might be different just as I was getting to the point of doubting. Shame it's painful again but that little time has made me wonder.

Dinner .. again it's veggie mince, potato etc. I have some fresh onions in my bag for cooking too!!!!!!! Along with a mixture of spices. I bought some daal today too .. ready prepared but I think my days of wandering to cooking that again are a bit in the future ... will go with the eggs.

Saturday morning.

Well, the clouds didnae stay away!!! Earlier this morning was a bit brighter than it's been for a while but the clouds were back again pretty soon. Not really what I'd think of as a bright sunshiney day but maybe ... there'll be one or two on there way soon.

I'm tired again today. Got to bed earlier last night, woke up feeling more awake but the tiredness soon came rolling back in again.

I suppose I have to expect this though. I do want to rest while this is going on anyway. It's just exhausting.

Pills sorted and ticked.

I think the machine does have some effect though maybe not for pain relief for me. I'm trying pain relief magnets again as the pharmacist I asked about them last time said they worked for her ... though not for her mum. So, I'll give them another try.

You never know. Though maybe there're more for arthritis. But I guess different things have different effects on different people. But just taking the pain down a little would be a help.

Anyway off to dinner!!!! Staying with the veggie mince and a couple of eggs.

Leave those alone!!!!!

In from doctors, steroid sparing pills down and marked off. I was quick with the book this time to mark the pills off. I really don't want to miss any more and if I forget then I just don't take em. Roll on the days when there are less to take and taking an extra one won't put things out of kilter.

At least an hour to go to dinner then!?!

Was thinking about that school. Can't remember where it was but it was just like the wall of a shed type structure that needed doing and I really couldn't see why it couldn't've just been sorted out. There were no high structures in the picture so safety wouldn't've been an issue.

Was just about to reach for my sugar free caramels then ... I've 50 mins or so before I can eat anything!!!! I expect caramels are about the worst things I could eat too. Shows how much my eating habits have changed though ... I've eaten three of them in about four days ... and my mind goes back to beans, beans and more beans.

Er ... and, no, I don't have a problem that a way. I stay firmly on the ground .. no jet proppelling!!! Never did .. so at least I'm not adding to the planet's problems in that way!!!!!

It's nice out there now. If I was well guess I'd be out for a walk. There does seem to be more movement on my right hand side ... maybe it is the new machine but it doesn't appear to be helping with the pain, though I know there will be a lot of pain as things start to move again. Well, I suppose it is helping .. I noticed a change the first time after I used it.

There's a muscle condition related to the cell illness I have and I've been wondering if that's affecting me at all. I know that it's more than that but I've been wondering if there's a connection.

Sunshine?

Looks like we'll be having a bit of sunshine tomorrow if the weather forecast is right. Be nice even if I can't be out in it for long right now.

Must admit that one grey day after another finally got to me a bit this morning. Waking up to a nippyish morning, clouds everywhere.

Nothing to complain about really .. but a bit of sunshine would be nice. Maybe we'll have pleasant warmish days through September and October with any luck.

One day over ....

And, yes, it is best to take one day at a time. Get things sorted for that day. Have to say that today has been a short day devoted to getting groceries in and resting really.

Hopefully I'll be up earlier tomorrow. I've felt a bit better for a long sleep but I think that was a bit too long. But I guess I needed it.

Sleep is good at the moment though, much better than when I was getting just four/five hours a night.

Tonight's meal .. another dip into the soya mince and a bit of mixed veg and potatoes and a yogurt.

And then ...... ZOINK ........ back to sleep.

And, hopefully, up at a reasonable time tomorrow.

Entrepreneurship

I was wondering when I read a little article about a school in an apparently well off area where someone was complaining because part of the school needed redecorating outside .. why they didn't turn that little bit into an art class. It wouldn't really have taken much money would it and might have attracted enough attention to get other projects/repairs seen to along the way.

Dunno why that stuck in my mind but it did surprise me a bit.

When there are so many children living in poverty in this country today.

Feel good foods

I think mine are spinnach, chickpeas and porridge.

Not foods that give you a temporary sugar boost that then drop down quickly so you can feel all lethargic.

Brocolli could be up there on that list too I guess.

Evenin'

Well, yesterday's little upset turned round full circle and worked itself out. Goes to show you I suppose!!!!!

Snort!!!!!!

I wasn't upset for myself really anyway ... though it did rather astound me!!!

Anyway, got me chickpeas, spinnach, eggs and Marmite in as suggested. You are what you eat etc!!! I think it's my B vits that might be on the lowish side in my diet at the moment so I'll be sorting them out now.

The ice cream's out and the chickpeas are in the freezer. I prefer savoury things to stacks of sweet stuff anyway these days. Though I have been through my chocoholic time but now I'm just not that interested.

I crave veggies and soya stuff!!!!!!

Someone's posted up deficency and toxicity signs up on one of the boards so that should encourage me. I can remember learning all that when I turned vegan. Can't remember if it was from one of Thorson's own books. What amazed me at the time was finding out that people in this country sometimes suffered from minor signs of scurvy because of a poor diet.

I think another one of my ulcer's is trying to sort itself out too. Though with this one it seems to be three steps forward and two back. It never seems to quite get there though it tries. It's a very strange illness. Better be off to get the steroid sparing drugs for the evening to encourage it along it's way I guess.

And, yes, they are very strong drugs .. guess they'd have to be to sort this out to any degree.

As I said before I think I was very lucky to have a bit of me massaging, yoga and meditation and nutritional info sorted out before having to cope with the illness. Fun at the time and useful now. Not, ofcourse, that I've been up there sorting it out as quickly as I should. I would book myself in for therapy at places but I'd wait til my ulcers have sorted themselves and it's the muscles and skeletal problems that are left to be sorted out.

And, er .. yes, I think it was David Carradine's series that had us doing martial arts. Used to like that though we did judo rather than kung fu but that was probably cause that was what was on offer at evening classes round the corner. If it'd been kung fu we'd've gone to that.

Though my sporty days are obviously over now. Even woodland treking I guess. But, I enjoyed what I did .. now it's time back to the books more and things, when I can. It's not so painful to sit down!!!!!!

It's raining .....

Teeming down out there. Raining again. I woke up after another long sleep. I really slept in today to be greeted by the sound of it absolutely chucking it down out there. Not really a surprise though it's a "bit" heavier than usual. Occasional slight gust of wind too.

Well, up .. at last .. steroid sparings and pain relief taken care of!! Marked off etc. Sitting here waiting to go on to next stage .. steroids and food!!! Just a bit later than usual. I don't mind long sleeps at the moment, think that they're probably good for me. Though ofcourse I feel that I'm missing out on things I could be doing if I was awake. Never enough hours etc. And even less if you're fast asleep for half the day or more.

Spent about five minutes with my new machine, used it round my shoulders which seems the best place to release muscles at the moment. That and my right hand side below the armpit. It's not very comfortable but then neither is the TENS machine. But then medicine is medicine. Guess I have to expect this!!!!!

Finally sorted

Well, my freezer's full of ready meals, bread, some frozen fruit and frozen brocolli, cauliflower and spinnach. The ready meals there before were from last time I was in hospital so I thought it best to sort all that out.

Vegetarian and vegan duplications ofcourse. Not that much to choose from really but I don't mind. The ready meals are much the same. Though, on the other hand, with a bag of spinnach and one of chick peas you can work wonders I guess. Bit of curry powder/garlic/a tin of tomatoes and there we go.

Been sorting it out over the last few days. It's only a small freezer but there's enough there. Fits under a working surface.

And got eggs and marmite.

One day at a time

I still go and read the inspirational thoughts. Pick your own and it's something to think about. Sometimes they are really hard and there's a lot of thinking to do. I'm aware how true they often are too .. though ofcourse there are lots of things happening every day and they can be adapted to all kinds of things.

But they've helped me a lot. But they keep my mind on track sometimes when I'm sleepy and ill. Remind me too that each day is a different day and that when I go to sleep at night that it is getting through one day at a time.

Today has been a hard day but it hasn't been a bad day. Though there was a disappointment and a resulting sadness but I'm glad that I know.

And, actually, it was good to find out. Means that I don't have to be wondering and wavering at all. If I could I'd give a stretch and a sigh as I now know that I know exactly where I stand on this point. But the stretching isn't too easy right now.

It was said it'd hurt a bit but that would be over quickly .. and it will be.

Life goes on however ill you are.

Mentally twirls (though is sad)

And I suppose I better potter off and find the peanuts for my veggie pie.

The machines

The TENS machine is used in Pain Clinics. The Intrasound Unit is works at a lower frequency than that of ultrasound and therefore is suitable for home use. That's off the box. Says it penetrates deeper than conventional massage to stimulate blood flow thus increasing circulation and aiding natural tissue repair.

Well, ordinary massage is more to undo those knots that form in muscles which inhibit blood circulation etc., etc. Helps relax the body and the mind and therefore everything heals faster etc. Nutrients, if you're eating them, travel round the body with more ease and the body works better.

Both machines are meant to help with pain but my pain is chronic and I'm not sure if it's so easy to tell as it would be if it was less so. Also as it's muscle pain that is going to be different every day to some extent as things move round and ease a bit it's difficult to tell exactly what's going on.

Plus, ofcourse, there's all the pain relief I take. That is topped up every so often so that's going to change what I'm feeling.

Part of the pain is neurological I should think as I have numb patches rather like those that people can get when they have MS. There are two neurological pathways and the numbness can go with neurological pain. Before my next hospital visit I'll have this all documented and diagrammed!!!

I think the second machine has done something though. I said there seemed to be a change in the muscles last night and this morning there seemed to be a slight change in position. There was no miraculous loss of pain though!!! I know it says that there might infact be an increase in pain because there might be a bit of inflamation for a couple of days as the body responds to the therapy.

We'll see. But there does seem to be a change in the muscles as I said there was last night.

Didn't expect it!!!

I was told at the hospital that TENS machines work for some people but not everyone. I wonder if that has anything to do with the sort of pain or injury.

I think what I'll be doing is trying to massage the muscles back into some kind of healthier state and hoping there's less pain then. I've still got an old sports massager that I bought about twentyfive years ago that still works and which I've still got, though not here, that used to work very well. Much better than anything I tried later. It was and still is excellent combined with hand massage for healing.

All this is making me realise just how much better things must've been for mum. I know she used to really want the head, back and shoulder massages. But, now that I'm in a kinda similar position I realise just why. Must've helped a lot.

It would've been nice if I'd had these machines too then but I'd gone to me classes back in the late 60s/early 70s. Unknotting muscles was what it was all about then but still having learnt that means that now I'm very interested and open to finding out about all this.

I can remember walking on people's backs too and twiddling the toes around the ribs!! Though we found that in a book rather than at classes. These days I wouldn't really think that was too safe. Shoulder/back massage by toe!!!

Anyway, rubbish down for the binmen tomorrow, dinner on .. veggie cottage pie and peanuts and a slice of bread and marmite and then I'm off to sleep.

Means I'll be up early tomorrow and that means pill taking has to be sorted out from an earlier time but I want to start being in bed by around ten. Know I keep on saying this and I mean to do it. Up around seven and in bed by ten.

They say the body's more adapted to sleep around that time so there's something else to go for.

Wednesday

Well, I couldn't resist temptation and tried the machine last night. Not sure about helping with the pain but it did appear to relax the muscles a bit in my back. Massages are good.

I only used it for a few minutes though as the instruction leaflet with it said that for the first couple of days there could be a bit of extra discomfort as the body adapted to its use. Maybe the heat pad'll come in handy.

Tired again today . Not surprizing though is it with the illnesses, the pain and the medication. Got me early pills sorted out .. taken and marked off in both places. Done me eye exercises and 10 minutes meditation. Will do the little stretch and hold exercises further into more pain relief later on in the day.

Dinner .. a couple of hours after taking those pills

Dinner tonight: a bit of cauliflower cheese, tinned tomatoes and a fishless fishcake and some bread and marmite.

Think that's ok as far as the healthy eating goes!!!

Still tired and the pain's been bad today. I've bought something called an intrasound machine or something like that to try now but really I might have to accept that it's just a matter of waiting til the muscles sort themselves out a bit or having a different pain relief mixture worked out. Taking it makes a lot of difference but there's still a lot of pain there. Maybe I'm starting to develop a tolerance to the morphine but it works to a certain degree.

Pills sorted more or less: Got me MST to take and the last oramorph and paracetamol of the day. The steroid sparings were taken earlier around eightish.

All being marked down as I take them. Just getting used to it now.

........

Up and attached to the TENS machine. Pills taken and marked off!!! As I've got it I might as well use it. Did me eye exercises and meditation today and tried to hold positions stretching my muscles out. The last not being much fun at all!!! But there you go.

You never really think you're going to find yourself having to do things like the muscle thing I guess. Someone has posted about bad backs on a forum .. wish I could help but I haven't the foggiest. My pain is much more extensive than that and I haven't any answers.

As a guy I was talking to a few days back said .. life can be tough!!! Someone else said just take it a day at a time and that is what I do!!!! So do they and it's the best way to manage things like this I think.

Seems to work.

Pills and ulcer doon ....

Well, another ulcer down. The one at the bottom of the left side of my neck is just a circle that is slowly getting lighter rather than having any broken layers of skin there. Why I have no idea. You'd think there would be some connection between them but this isn't happening.

I'd thought that they would improve as the muscles changed and this does seem to be happening because obviously all the swelling and inflamation isn't helping the skin layers to settle.

But there are other things going on too and I just have to wait and see what happens with them. These are illnesses and a half, aren't they!!!

Tomorrow I try something else. I am sceptical as usual .. but there's no harm in trying.

You'd think with my experience, learning massage etc, that I'd be in there using all that I've learnt. I'm often too tired though. But, ofcourse, once I'm well enough to be home, we can swap what we've learnt, and theraputarise each other!!!!!!

I'm looking forward to it. Accupressure sounds good. As I said a long time ago it's good if your friends are learning these things too .. you can help each other .. like a therapy centre.

And, about healthy eating .. I didn't last night .. just had a piece of pizza and I felt noticeably bad this morning. Second time that's happened so I suppose there's a connection. This evening I've a veggie based meal going on. I meant to last night just didn't get around to it in the end.

I do listen to what everyone says, just don't always get round to sorting it out. But then who does every single time!!!!! Last night was because I hadn't defrosted and it would've taken me ages to do dinner if I'd waited. I guess pizza+ might've been ok but not just pizza by itself. Me body has a lot of healing to do.

Right .. the evening's paracetamol, steroid sparing drugs, MST and oramorph are about to be sorted out. I don't want my dinner at 12.00 or something waiting because I've taken me pills very late!!! I've done it before a few times. How much easier was it when there wasn't quite so much of half an hour before this/an hour before that etc.

I just hope there won't be any more to add in along the way. You could just imagine couldn't you. Right, that's ten minutes before those and half an hour before food, and they are .......... ad infinitum ..........

At the moment steroid sparings are down, marked off and the paracetamol is fizzing .. I do those first because they are the ones that it's really important to mark off.

I double check them now too. Don't want to do without them but don't want to make myself feel ill either.

Done and dusted.

Getting up

I sleep propped up cause it makes getting up easier. I can get the pain relief easier without having to flounder around. Someone I've met recently has to as well. And my father did too. In hospital they have beds where the back can be raised and lowered, out of hospital I'm improvising. But, it's ok. Generally takes me about an hour to sort everything out and for the pain relief to sort things out. The first dose seems to make me very tired again but then that wears off a bit and I get up. Take my steroid sparing pills, wait an hour or so then I can eat, then take the steroids after a yogurt. Then I start to wake up a bit again.

The first dose of pain relief just takes the edge off the pain, the second one helps a bit more but someone else says it's much the same for them so I suppose this is quite a general thing.

This morning's (well, afternoon today .. another long sleep) breakfast was a cereal bar rather than a yogurt and it's now time to dive in for the steroids ... eight of them .. right, taken and marked off.

Everything takes so long now. But, there you go. It doesn't really matter. I'll do a few very gentle exercises after the next lot of pain relief. There's 10 minutes of meditation and my eye exercises to do now.

I used to help mum through something similar. Well, the pills, the exercises and food. We both have a mixture of illnesses but you learn to cope, though it's hard to start off with though at the moment I just want to curl up and go to sleep again but I'll get a yogurt and then get meself sorted out. It's helped getting to know other people in much the same predicament and, ofcourse, having looked after mum cause I can identify with a lot of what I did for her.

I'm a bad patient and so was she. Someone started a thread about this on one of the boards (sigh). Yup, I am .. but it's just a way of looking at things I guess. I was very active once and that's where part of my personality is I guess. It's hard to just curl up and stop. Mum was much more active than me when she was ill but I guess that's down to the differences in the illnesses. I can't be active for long because pain will break through so easily and I'm so tired.

Well, think it'll be TENS machine (15 mins), yogurt and meditation and eye exercises

And, yes .......

There was another survey with much the same results. But I guess they'll be coming out again and again unless something happens. Some people say the damage is already done and there's no turning back but I don't agree.

I think that money and expertise should be put into all schools and not just some. I can remember some columnist here wondering about the divide between different schools and I agreed with him/her.

We live in an electronic age.

Well, just one piece of a jigsaw.

Memories (part2)

I said about Tony too, who I've known for many, many, many (etc) years .. from 1971 I think. He's had a pretty fuzzy memory during that time in some ways but it's not got worse over time. Though he came down with an illness, that meant about two months in intensive care, which made his memory worse for a while. That was about ten years ago and he's in his late 60's now and his memory's no worse than it was before the illness or going back before that.

I mentioned neural pathways and memory too.

http://thebrain.mcgill.ca/flash/d/d_07/d_07_cl/d_07_cl_tra/d_07_cl_tra.html

Which is about building pathways in the brain through repetition.

Searching for the pain relief.

Having a quick burst with the TENS machine. It says on the package that the machine is widely used and recommended by physiotherapists and doctors so I'm willing to give it a go. The pain does vary and some of it could be down to the machine I guess.

Got a load of soya stuff in too. I'm missing my soya foods and think it's time to start eating more again. It's easier eating more dairy things in your diet I guess but I'd like to be more on the vegan side again. It's just working out what's the best. But it is easy to drift at the moment so back to more of a mixture.

Back to meditation too. Some of my friends do and I don't. I mean too but I get tired and then forget. Though I did about fifteen minutes a couple of nights ago. I can practice reflexology on my feet and things like that. When I'm back in London I guess I can ask other people to do it for me (hum?!!!!).

Om Mani Padme Hum

http://dharma-haven.org/tibetan/meaning-of-om-mani-padme-hung.htm

Should really get down to it .. maybe I'll discover the way through to pain relief through it.

Hum ........

Well, thy say there's a method that can help reduce pain that's taught in some pain clinics. I would like to find out what it is.

I'll do a bit of gentle exercising too. Well, I do a bit when the pain relief is high enough. Just a little too .. 30 secs here 'n' there.

I'll go back to keeping my diary over the next week for the hospital .. both about the muscle and blister pain. In detail. I don't like being on the medication but it's much better being in less pain and tired than having the pain exhausting you.

And I must remember with the TENS machine to take it off when I've finished with it rather than getting the pads pulled off and fluffy when I get up to move somewhere. Quickly does eye exercise!!!!

And

more about the same study I guess

http://www.livescience.com/health/070425_eyes_memory.html

And ......

Maybe somethings from this page:

http://www.saga.co.uk/health/healthyliving/mindmatters/?maggoog=y

Memories ...

It's amazing how many young people are saying they have short term memory problems here. Someone, in their late 20's said it's doon to the booze, when we were talking about it. When I was in hospital I read this and put a bit about it on Empower's site. I put quite a few health topics up there.

http://www.express.co.uk/posts/view/6230

That's the one I read .. so that's the one that'll go up. It mentions about eye movement bringing back childhood memories too which might be of interest to some.

Anyway it seems moving your eyes from left to right could improve your memory.

Someone is worrying themselves about their memory on another board and I thought I'd take this over there.

Again, it's worth a try.

Still a bit on the Zzzzzzzz side

Up .. and still tired. A lot of the time I just want to doze these days .. but with the weather out there I guess there's not much to really make you want to get up and dash out in the mornings even if you're feeling well.

There's plenty to do though and the day's not long enough. Had a bit of a talk about this on one of the boards .. and, no, the day's never long enough, is it? There's always so much to want to do even if you are ill.

You don't have to be biking through the States up to Canada to have loads of interests keeping the brain ticking over and not wanting to sleep.

Keeps you busy and, I guess, keeps you happy.

I would like to be biking through the States up to Canada though. Infact, I'd quite like to be living in the States because of the vastness and things to explore. But, ofcourse, I won't be. But, still, if I was well, it would be nice to plan, get on the bike and go.

If I was there I would rather be heading off to Louisiana than Nova Scotia but for her going to Nova Scotia is more of a holiday and adventure than going to Louisiana I guess 'cause it's in a different country.

I dunno her trip's just caught my interest though and I'm looking forward to hearing all about it and seeing the photos.

Three weeks to go though I am an emailing companion while they're away but I've still got to wait to see the photos and hear more about the whole trip.

Well, I better get a move on I suppose. Second dose of pain relief coming up for me and then I'm out for a bit. But ... not for far. lol!!!

Sigh.


Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Well, they're off!!! I suppose the connections there: interesting that they're off to Nova Scotia while I really like Louisiana. She said ages ago that we'd a lot in common and it's true. The biking, the politics and I suppose a liking for places with similar connections. That came as a surprize to me. And .. um, both being a bit on the late side. (Well, I hope they're off).

Ofcourse I'll never bike again. I said sometime ago that I was an armchair biker now, reading me bike mags and watching dvds. Think it was while I had the limp, little did I know that would be how it would stay. Well, the limp's gone, but I won't be biking again.

I'm sleepy this evening again, been dozing a lot, not sleeping, just a sort of sleepy wakefulness. So, I'm taking me pain meds and off to sleep.

Taking medicine

There's a poster in Boots that says that a lot of people don't take their medicines as prescribed .. about 70% I believe. A very high number anyway. They offer a talk with a pharmacist to get it all sorted out.

There are so many different rules with different medications. It's worth a talk and ofcourse reading the instructions that come with the packs of pills and bottles of medicine.

Grapefruit juice

is not as innocent as it seems.

I'd posted up about this report on one of my boards a couple of days ago:

http://news.bbc.co.uk/1/hi/health/6900482.stm

and one of the other posters had said that she knew that grapefruit juice also reacted with some medications so this morning I googled it to see what was on the net. Well, there's quite a bit. Just one link:

http://www.sciencedaily.com/releases/2005/01/050124010803.htm


It's my favourite fruit though I've hardly eaten any for a long time. Not a conscious decision though. I had wondered if drinking quite a bit of fruit juice had made this illness worse at one point and stopped. I like fruit juice but it's really rather acidic and sugar laden. It might've been a catalyst for the illness getting worse. I drank a lot of it over a few days before the illness got worse. You never know and it was the one change in my lifestyle at the time. Might be just how lots of fruit juice reacts with this condition. Best to be on the cautious side.

Guess it might just've been something in me subconscious that kept me away from one of me favourite drinks and fruits. I suppose I'd read about the medicine interaction somewhere down the line. Still, I think with this illness drinking largish quantities of any fruit juice might not be a good idea.

Anyway, had a very long sleep last night and today is me day for the weekly half hour before food pill so I'm sitting here waiting ...

Bit difficult if you've had a long sleep in but there you go .. it all gets sorted out somehow.

The muure things

change ... the muure they stay the same!!!

I don't know who said that but they were very much on the ball as far as that went. They shouldn't be but there are all kinds of things said that illustrate the truth of the saying.

Someone who works in social work said the line between civility (I'm being polite here) and losing it is very thin another kind of illustration of the more things change ..... saying I guess.

Some people say you'd think lessons would be learnt when they look at events like WW2 .. another illustration of the more things change ............

Ofcourse there are exceptions ..... but ....

Holidays etc

One of my net friends and her husband are just about to bike (motor) off to Nova Scotia for three weeks. She's a teacher and over where she works the summer holidays have been going on for some time. When she comes back it'll be time to go back to work.

I've been trying to remember if she's older than me or not!!! Retirement must be in the air somewhere. Once I might've said wait til you retire but after developing this illness I'd say what other people, older than me, had said to me before, don't put things off if you can do them earlier.

There's no way, even if I went to visit her and they wanted to do anything like that, that I could ever do anything like that now. It's been one of her dreams for many years and she's off to do it now.

I'm not jealous .. never been jealous of anyone/thing in my life. There's always something to do .. a book can take you through a lot of dreams .. an art book from the library and a book of paper and pencils. A book on yoga .. a language book. Whatever. People to go out with and talk with.

There's no reason to feel that way.

But .... I cannae wait to see de fotos!!!!

I hope the weather's going to be good for them.

(Sitting here with me TENS machine attached to me back, waiting fer the oven to heat up, sitting next to me orange box of medication etc.)

The box was really to keep my pencils and felt tips etc in. My drawing things but it's doing a more useful job as a medicine chest.

Bubble packs weren't any use because of the taking pills half an hour/an hour before food etc. And anyway there're just too many pills to fit in the bubbles. Mum had them for a while and they wouldn't be any use with my collection of medication unless they have new designs.

Pill boxes mightn't be either. I can remember going out to try and find suitable ones for mum before the bubble packs .. she had a fair amount of pills too ... but not finding anything suitable.

So me medicine box plus book and biros .. I've put two in incase one doesn't work .. seems the best .. home improvisation.

Anyway, things are ok now though it's still a bit annoying with the half hour/hour etc before food and I've had a bit of a cold this week which made me a bit tireder than usual and I missed out two doses of the steroid sparing drug and one of steroids in about four days .. not good with this illness .. I wasn't going to risk taking them incase I already had. Just made me sit and think and that's when my medicine and book and biros ended up in the box that should've been for my art things.

One of my friends has made one too now and someone else thanked me for the idea and is gonna make one too. I bought the boxes because I liked the colours. I bought one purple and one orange one .. same colours as my MST (!!!) so now my art things'll just be bundled into the purple one. Doesn't matter. Just glad the colours attracted me over to have a look. Made me laugh at the time. I had no idea how useful they were going to turn out to be.

My book came from The Works warehouse sale. One of those pink books with multicoloured pages. I just write up the pills I've got to take at the times I've got to take them and put a box next to each one and put a tick in the box when I've taken them. I was going to use that to sketch in too but it's being more useful as it is now I guess ... well, I know not I guess.

Brill!!!!

Now off to do dinner ... soya mince and dried potato mash and carrots (tinned) and an egg.

Brill!!!!

Oh, and a slice of bread and Marmite.

I've put some ready meals in the freezer incase the weather gets worse. But it really doesn't take much longer to sort them out yourself if you put the soya mince in to soak with flavourings the day before. Just add a few tinned carrots and then cover with the potato and water mix.

Anyway the meal's on now.

I'll be eating an egg with it. Might as well while I'm eating vegetarian rather than vegan.

The smallest ulcers are looking better but it's a difficult illness. I've more than one illness anyway, the other one is affecting my muscles. But this is difficult though it's the other that causes most of the pain.

Someone I know is just waiting for what will probably be a diagnosis of lupus which is an illness that is quite similar to mine. I have a friend in London too who has a daughter with this illness though her daughter has had it for many years. While I was looking lupus up on the net I read that lupus is becoming more common than it used to be. Wonder why that is .. changes in diet maybe. Who knows.

I've also been surprized at how many auto immune illnesses there are. I've heard of quite a few but there are quite a few others that I hadn't.

Multiple Sclerosis, lupus and rheumatoid arthritis are well known examples and illness like mine, not.

Multiple sclerosis

http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=254


Lupus

http://www.nlm.nih.gov/medlineplus/lupus.html


Rheumatoid arthritis

http://www.rheumatoid.org.uk/


I'm interested in all this too. I guess because I have medical people in my family and because I'm ill but also because I discuss medical things with the two young people who're hope to become doctors. They're still interested even with the shortage of placements in this country. Brave guys. But, we've been talking about this and ways round it all. Even with me tired out etc they've raised interest here.

Right, and now I'm going to get my dinner!!!!

Zzzzzzzzzzzzzz

Well I slept through for around ten hours last night. Much better than it's been for months though I have to say that I've not been feeling at all well for the last few days. A couple of months of just a little sleep on top of everything else catching up with me I guess. I felt better yesterday evening though a bit late in the day really fer that I guess!!!!

Sorted out my pills and the marking off. They are now in an orange box I bought in the Smith's sale a little while ago .. half price .. down from £4.99 to £2.49. I've put the marking off book plus a biro in the box with them so everything's together. Much easier.

Just sitting round after taking the steroid sparing drugs, the ones that I have to take an hour before food in the morning.

Seems a slightly nicer day this morning too weatherwise. Waits for the rain to start .. yes, there are clouds!! but as yet .. no rain .. well, if there was earlier on I was asleep and missed it.

Right .. steroid time coming up .. these are the pills .. eight of 'em .. I have to take with food. Potters off to get breakfast for the steroids.

Well, I did say once that I wanted to know if I took me pills with food or not .. didn't know it'd turn out to be so complicated.

Eats a bit of breakfast, then burrows into box for pills, book and biro again.

Done!!!!!

Much easier now that everything's together.

Sugar

Up and sorted. I had about seven hours sleep last night, twelve the night before. Breakfast: yogurt, fruit and a cereal bar.

I was saying on one of the boards that I don't really have much of a sweet tooth any more. I like fruit but candies and cake and things like that don't interest me much now. Someone wondered if your tastebuds changed as you got older and this might explain it. But I know people older than me who love sweet things so I don't know. I just find that there's too much sugar in most chocolate for my taste and some other things too. They often taste like sugar+ rather than the other ingredients plus some sugar. I find some savoury things are the same but with an over riding taste of salt rather than sugar.

I was quite surprized by the chocolate because before I started eating vegetarian rather than just vegan products while I was in hospital I mainly ate Green and Black's non dairy chocolate and the sweetness wasn't so obvious. But trying out different kinds of chocolate and other vegetarian products I was amazed at the sugary taste of a lot of it because it was so different from what I'd been used to.

I'd had that Bowen therapy that I mentioned at the time which seemed to stop my liking for what I thought were sweet things. Not what I went for .. that was about the little limp I had at the time .. which did get better .. remember the sensation of heat in the left foot while I was being treated!! But it was just a symptom of my illness which was more than just a little limp.

The sweet things were Green and Black's chocolate bars ..... I'd no idea at all that other chocolate was so sweeter. I'd been a vegan a long time.

I still quite like some minty chocolate but if I have a cold and it knocks out the minty taste a bit the sugary taste is very strong again.

Tired

I've been feeling quite sleepy the last couple of days and've just wanted to rest a lot. Yesterday I more or less wanted to curl up and doze for quite a bit of the day. Chatted a bit and went to the doctors but otherwise I wanted to sleep. Today I slept in and was surprized when I saw what time it was when I woke up.

Still if I'm tired a bit of extra sleep's a good thing. I'd not been sleeping much for a while. For some reason or other I slept less than usual while I was last in hospital and things had stayed much the same after leaving. I'd reckon that while I'm feeling like this eight hours sleep should be a minimum regardless of when I go to bed. I slept about ten hours straight through last night which was nice. Dozed through dinner time so I had a late dinner and then off to sleep late.

Throws the pill taking timing out a bit and the pain was a bit much this morning cause I'd woken up so late and the effects of the MST I'd taken the evening before would have well worn off (MST is slow release morphine) as well as the other pain relief. But I keep everything with me so I can take it before getting up.

Today was the once a week pill day too (half an hour before food). Got everything done and marked off.

I never realised that pill taking could be so complicated!!!

The honey

I was explaining on a board that I didn't spread the honey on anything but a rice cake .. or was it an oat cake!!!

It hasn't healed the auto immune illness. In fact it's because of that I don't eat it all the time just incase it counteracts the effects of the steroids and steroid sparing drugs.

It's just for when I have an infection. This time I had a cold and some phlegmn. Taking the medication I'm on can make it worse. I hadn't been down the doctor for any antibiotics but was just about to ring him up.

Remembered what I'd been told about the honey. Bought some, ate some .. and the phlegmn cleared up in a few hours. And the cough was very much better

Didn't make an appointment.

Told doctor at hospital and found out that he knew about it being used in the treatment of wounds.

Didn't google it until I was told about the sore throat and sinus problem clearing up over night and that the numbers 10+ etc referred to the antiseptic quantity in the honey.

Then thought if I was careful it'd be good to try when I get sore throats and things like that in the future.

Though

.... when I came back to the circle pictures I could see the gyroscope connection too in the geometry of the circles.

Mix and match a bit.

.... in kaleidoscopes

......... patterns in kaleidoscopes!!!!!!

more to the point!!!!!

Suddenly thought did I write gyroscope there .. me mind was on circles I guess!!!
Anyway ...

gyroscope:

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

and

kaleidoscope:

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


And I have to say that the pictures there are rather more complex than those I had in mind!!! Those are very complex kaleidoscopes. Very nice but rather different from the ones I'm used to looking at.

Boarding

Today there's been talk about ...... the weather!!! Well, it's very hot in The States in places. As people'll know from my early blogs one of my major interests. And very grey in general and a bit on the rainy side here.

http://www.bbc.co.uk/birmingham/weather/forecast/index.shtml?summary=show02


And crop circles. I just said that I thought they're lovely and reminded me of mandalas and the patterns in kaleidoscopes. The pictures were fantastic though.

Steroid and steroid related medicines done for the evening.

And, thanks to the people who helped me today. It's not been such a good day painwise at times. But on we pootle!!!

..............

Continues ........ sitting here waiting fer the hour to go past between taking the steroid sparing drugs and eating dinner. So the oven's on, heating up, and, the pills are taken except for the last dose of pain relief later on this evening.

The clouds are still here .. though no rain.

Up!!!!!

Up and sorted. Breakfasted and medicated. Tired and waiting for next lot of medication. Same as usual.

Day: grey. Lots of clouds out there. Same as ...... Well, much as. I guess that's been pretty much the picture for some time now. Sometimes there's a little sunshine, sometimes a lot of rain!! Sometimes ...............

But, generally, quite a few clouds.

Hail

I was on the phone to someone in London today and they were telling me about the hail storm in South London two or three weeks ago, sheets of hail rolling everywhere, covering everything in white. Didn't sound like anything I'd seen before and I'd've loved to've seen it. It must've been quite spectacular to've stuck in someone's mind like that. Very different anyway.

Some people say it's going to be a wet summer overall in the UK .. well, it's lived up to that so far but there's a way to go yet. It's raining now .... no hail though. It was quite nice when I went out a little while ago but by the time I was on my way back the clouds were filling up the sky and it looked as if we were in for some rain ... again (and again and again and again and again). I got in with about 10 minutes to spare I reckon. And we were. I'd taken my brolly with me ... on the off chance but it's nicer to be in.

So, there we go, talking about the weather again. I would like to've seen that hail storm though.

The phone call wasn't just about the weather. They said that they'd teach me a few things that I've forgotten how to do on the computer when I get back to London. I was going to try and teach myself but I think it's easier to have someone show you really.

And ofcourse amongst everything else we talk about my illness .. and other things .. and on and on and on and on.

Which reminds me of the article about whether men speak more than women, t'other way round or if it's much the same. I think they reckoned that men, in general, probably use less words per day than women, but not as many less as they though a while back when this was being researched before. I'd thought of some of the men I know when the last bit of research came out and had thought it wasn't very reflective of people I talk to now. I also thought that some people I know have changed quite drastically over the years as far as conversation goes, some speak more, some less.

Well, it's brightening up out there now and there's a mixture of light grey and dark grey clouds and all in all it's brighter. Still raining though.

Reading blogs

I decided to have a look round a few more sites today. It's quite a long time since I've read a blog where I haven't known the person whose written it. Just been looking round the first one I clicked on. The front page has a section showing pictures that've been posted that day and a few excerpts from the blogs. There seem to be quite a mixture of people there and should be interesting reading. I think most people'll be quite young though.

Tanitedemotears? How old do you think? And do you think that's a spelling mistake or something creative? There's just the one post so far. The person's from California. I'd wondered if emo would be emo, US, or emo, UK when I saw the little excerpt. Well, soon found out.

Anyway that'll do as a site for me to read. Just the first one I clicked on to. Might try some more later on and have a look round.

Should be interesting.

Right ....

that's the lot of them done for this morning!!! Paracetamol done at 8.00!!! Steroids with breakfast now. No more of those til tomorrow. Steroid sparing drugs an hour before breakfast ... more of those tonight. (an hour before food).

All marked down or ready to be marked down.

Sometimes you feel just like throwing them all in the air and having them rain down in a multicoloured shower.

But .........

Instead ... carefully counts out eight of the little red ones ... three of the oval mauve ones ... two of the big white ones ... burrows down for two sachets of orange granules. etc., etc.,

Carefully measures out water, checks time

Oh, whoops .. there's the nice lemon flavoured one too isn't there. Dives into bottle. One more of those tonight too.

Lots of people don't like taking pills. I just take them. I didn't like them to start off with because I'd hardly taken any pills for years and years and years. But they don't really bother me in that way anymore ... it's just getting them all sorted out.

I think it really has to be pill box here I come!! Though those fizzy paracetamols are a little on the large side. And I prefer those.

Um ... problems. So, it'd back to marking the fizzy paracetamol off anyway I guess.

The usual ........

It's a pain having to wait all these different times between pills and meals. Can't start the pain relief too early in the morning either. Well, the morphine you can, but not the paracetamol if you want to space it out reasonably well during the day. Eight o'clock has to be the earliest. I can have more doses of morphine so can start that earlier. The morphine and paracetamol work together well as pain relief as paracetamol boosts the morphine.

There are other things too. The MST granules should be taken with 10mls of water .. so how long do you have to wait before you can take any more liquid. I don't take much water with the early morning paracetamol (fizzy .. easier on the tum) now if it's taken near to the MST. But there's so much to fit this all round.

Eek!!!!

Up etc (yawn)

Raisin pancakes, yogurt and a bit of fruit for breakfast.

Music: Electric Ladyland and a songs of 1969 cd.

Favourite songs off it: Chicken Shack .. I'd rather go blind, Fifth Dimension .. Aquarius/Let the sun shine in, Blood, Sweat and Tears .. You've made me so very happy, and Zager and Evans .. In the year 2525.

Bit sleepy.

Has one ulcer done a bit of healing? Another very small one but with a largish circle round it on the lower left hand side of my neck?!!!! Over night I think. Now it's just a slightly darker circle of skin minus the tiny ulcer that was there. This one was very tiny though. Guess it's easier for the body to deal with these than the larger ones.

The muscles have given me a lot of trouble today though.

No wonder I feel so tired.

You spin me right round

I've not really been following the change in leadership of the Labour Party that closely. Time will tell. Policy after policy and attitude to what's put forward. Disagreements between Mr Brown and Mr Blair might give a clue to the reality of the situation but time can change everything.

Yeah, still smarting. And it didn't help when Mr Cameron was found doing a bit of green spinning himself ... not with a spinning wheel but centered round the less green variety ... the car wheel.

So, yeah, I'm in a let's just wait and see frame of mind.

None, of this .. you spin me right round

Honey, honey

Well, the honey seems to've worked for a friend's husband who had a sore threat and having trouble spreading to his sinuses.

I wondered if it's wise to eat it for a week or so after an infection has cleared up after eating it just incase it is this working. Just like you would antibiotics.

The working ingredient that the strength refers to is an antiseptic apparently. Well, that's what someone told me tonight.

Garlic

And when I say "the most interesting thing to happen in my life then" .. "then" means last week or whenever it was. This is the difference between mine and my friends blogs .. mine tend to be rather repetative these days while theirs are full of news.

I did laugh when I saw that though.

Though the possible effect of the honey was interesting. One moment being really stuffed up and with loads and loads of really thick colourful phlegmn and a cough that was wracking my body and which wasn't clearing up and then after eating a bit of this honey having it clear up ... just like that!!! Well, a couple or so hours. Three or four it was I think before I noticed it was gone .. I hadn't really been taking any notice to be honest.

I wondered about mixing it with herbs and spices for other colds and flus. Garlic, ginger and herb anise and the like.

The steroids don't make colds any easier .. but maybe this'll help.

You never know.

Plants and medicine

I suppose, in some ways, the effect of the honey was one of the most interesting things to happen in me life then. One moment I was all broncial from a summer's cold, probably made worse by the steroids because my steroids can have this effect, then after eating some of the honey, the worst of it cleared up.

Might have been a coincidence, but considering I'd been like that for a week and a half with no sign of improvement, rather the opposite infact .... I was very bunged up .... I'd say there could be a connection. Especially as it's known to have healing qualities.

I now have to try the herbal pain relief I guess. No reason why it shouldn't have some effect I suppose, many medicines are derived from plants such as aspirin from the willow:

http://www.botgard.ucla.edu/html/botanytextbooks/economicbotany/Salix

Who knows what remedies have yet to be found. The destruction of parts of the rain forest upset some people because they thought medicinal plants might've been lost that no-one had even known about.

There have been worries about over harvesting in the wilds too and cultivation of crops has been recommended so that plant species aren't lost. Not as likely as losing plants to deforestisation though I guess.

I take quite a variety of medicines now and I'm just slightly worried that the herb to help with the pain relief might affect some of the medicine I'm already taking and reduce it effects. But seeing what it does this is probably unlikely. Anyway, it'd soon be obvious if it did so I'll give it a try. This isn't exactly a silent illness. I will take it with food.

(worry .. worry .. worry .. worry!!!!) Well, the honey worked well.

Taken my weekly bone sparing pill. It is very important that this pill is taken at least half an hour before food. It has been!!!! Not quite sure why this is though I do know that it reacts badly with dairy products and won't work so effectively but I think there's probably more to it than that.

yeah

A lot of my friends keep blogs now. It's quite a good way of keeping in touch and letting each other know what you're thinking about things. Some of them are semi private, some not. Mine are mainly about my illness obviously, not very interesting I wouldn't've thought unless you know me.

I have to admit that I don't read any blogs now unless I know the person but then I've always been someone who likes to be doing rather than watching. I was like that as far as sports goes too. Never much of a spectator, always preferred to be doing things.

But, tonight it just showed how useful they can be. One bit of writing and everyone knew what was going on.

Anyway, I'm off to bed. Up at around eigh tomorrow I hope. Taking me pain relief with me so that getting up is relatively ok

Wow, though, the wind's starting to gust up out there. Or, so I thought. Maybe, it was cars going by. Me hearing's not that good right now. Things can be pretty indistinct. I don't get to be out in the open like I used to be now. The main interest of my life in some ways. I don't join in anymore though I'm following the global warming debate to some extent.

Was vaguely interested in the honey but have to admit that I didn't bother to check it out til much later. Amazing though. I must've had some nasty infection and it's difficult to comprend that it worked like that. But the odds are that it did, Can't remember if I posted that page up here but I expect I did. Or someone I know'll have posted it up in theirs. Pretty cool. It's gone up over the boards I post on too. It'll help someone.

That's what the boards are for to some extent. Posted it up at my newer ones too. It takes time to fit in with a board and get to access its personality. I stay away from the bitchy cliquish type. But yeah sometimes it takes time to get to figure out the undercurrent. And, never again am I spending oddles of time giving out help and support where very little comes back in return. Share and share.

I seem to've got there anyway. Don't know about the newer ones yet but the ones I've been with a while are fine. The ones that weren't've either closed or I've left. At the moment at me favourite places I'm given support and help etc and I give it back in return. And that's how it should be.

I've just joined a very promising one to talk about things that I'm interested in. Very nice welcome and brilliant attitude. And just what I'd love to talk about. It does have it's general and fun side too so it's all good.

And,I can just hear someone from one of the boards saying that I should be getting my sorry butt off to bed right now, in me mind's eye.

Too true blue!!!

(We're nothing if not multi cultural!!)


............ so, off I pootle.

Off to bed

Well, been worrying all day about a friend, but things are good. What are friends for if you can't worry about them. Or, something!! Anyway, I feel revitalised .. well, mentally and emotionally. Breathes sigh of relief etc.

It wasn't much I guess but it kinda meant a lot.


Right, that's sorted.

No chips then!!!

Didn't get them out of the oven properly. So, instead of garnishing me meal with chiplets, let's go for carrot sticks ... and why not.

Chips!!!!!

Wish this would all happen a bit faster. It's such a slow process and it hurts!!!!! But, never mind, on we go!!!!

Well, off to put dinner on right now. The little bits of the day go on as usual.

We're building up on the morphine again, enough to help through this, Yesterday the pain was really bad in one place, today it's somewhere else as the muscles move again. Actually, I guess, I don't wish it was quicker, cause then there'd be more pain at once, so this is better.

Dinner on ... with some oven baked chips ... and why not, huh. So, I eat very healthily all the time. I think a few chips'll be ok now and then. Tonight is now and then!!!! then.

Apart from the pain the day's been ok. I'm tired but then that's natural I guess. Really sleepy this morning. Not so this evening which is rather the wrong way round but never mind. The pain this evening is more on moving than being still so I should get to sleep ok.

A bit of meditation. I suppose I should do that every day, but it gets forgotten in tiredness/communication/pills/pain etc.

I'm on orange flavoured sachets now. Well, haven't tried them yet as I've just been making the dose up by taking more of the raspberry flavoured ones but it'll soon be orange flavoured ones as they're a higher dose.

The raspberry flavoured ones are lovely so fingers crossed for the orange ones too. They had strawberry flavoured paracetamol syrup in hospital too. Don't have that here but never mind it's nice to have some of your medicine tasting nice.

Or, if we go back to the pills, bright and colourful like the orange and purple pills. Kinda works on the mind I think.

Right, the chiplets should be done, so off I go.

deleted

Obviously the sentence about the manuka honey was so interesting I had to repeat it twice.

Potters back in to sort that out.

Up earlier than usual

I still haven't got the pill boxes but am ticking off the pills as I take them. It's such a relief once they're sorted out. They have to be taken with all these gaps between them for maximum effectiveness and without causing any other problems but it was easier when I got up in the morning and just piled up one lot to take at breakfast, dinner, tea and supper.

The lady whose mum is ill has a rarer auto immune disease than mine. At the moment she is waiting to see what form of the illness she has. There are two forms. The first biopsy came back as inconclusive so they'll try again. Which form she has will decide the kind of treatment she has. Her family've been researching the illness on the net.

And, yes, it can pay dividends to do this. I found that out when mum was ill.

It's good to be able to offer support where you know it's genuinely appreciated. I can give her information about the steroids too as there's a possibility she might have to take them. I've also been able to tell her about the pill boxes/bubble packs etc and the problems I've had. It helps to know about these things and think them through in advance I guess.


I'm very tired this morning as I didn't sleep much last night but the up side of that I suppose is that I got in an early dose of oramorph to take the edge off the pain before the usual first dose. Think I'd rather have the sleep though to be honest and the medication by my bed for when I wake up.

Wish there was a way to sort it out so there wasn't this first thing in the morning pain but even with pain patches the effect wears off every three days and you have that gradual decrease in analgesia before it's changed. I have the MST instead and I take these slow release pills every twelve hours.

I'm going to be trying out the sachets again. I've some here and'll be taking pills and sachets together to see if different forms of delivering the morphine make any difference to the pain.

Oh, and the manuka honey from Holland and Barretts. Guess this might explain why my cough cleared up so quickly after taking it.

http://www.manukahoney.co.uk/news.html

Maybe this is what I need

Brought from one of the boards.

http://www.gamesforthebrain.com/

No .... maybe the pill box(es) are still the way to go.

Taking the pills

Yup. It's much better to take the first dose of pain relief before getting up. I'll be starting doing some new gentle exercises too soon. All learnt from when I used to go to the rehab with mum. It's just thinking all this stuff through.

I take the pain relief before the steroid sparing drugs though this means I have to wait longer for breakfast, they're the ones that are to be taken an hour before food.

Then it's the steroids with food.

The pill that has to be taken half an hour before breakfast on an empty stomach is only taken once a week. And, this is serious, if I eat anything it has to be left til the next day.

It sounds as if someone else could be starting a regieme like this ... I wonder what they'll choose to do. It was ok when it was just the once a week one that had to be taken before food but with the change of medication things got a lot more complicated.

Well, better for me because I don't have an allergy to the new pill, but a lot more complicated in a remembering if you've taken them or not kind of way. It's best to mark 'em off as I go.

There are others too but they go down with the steroids so are easy to remember.

I also mark down when I take the pain relief as there should be so many hours before doses.

Who'd've thought it would be so complicated.

Pain relief started at 8.00 this morning.

Sorting out the pills.

It's difficult remembering when to take pills now ... all this half an hour before meals and an hour before meals. I think I will get a pill box where you sort exactly what you need into it at the beginning of the day. That way you can't take too many or too few. Probably have to get more than one.

Because I can't take each dose of tablets all together a prepared pack from the chemist isn't really suitable.

I've illustrated the front of the book I use to mark down the pills as I take them and that's worked well cause it really catches my eye and it stays in my mind cause I spent a while doing it. And I have a back up.

But maybe pill boxes are the way to go.

Sunday but not sundae

Kept the pain relief by the bed last night ready for this morning. I often just keep the oramorph but last night took in the paracetamol and MST too. This is what I'll do now. Took it, rested for about half an hour as it took effect, did a few very, very gentle stretches and got up.

The first dose takes the edge off the pain. I suppose your muscles might stiffen up a bit over night, but they also rest. Getting up can be quite difficult though and the pain relief sure does help.

I used an extra pillow last night too to prop myself up, like raising the back of the bed mechanically as they do in hospital and that sure did make a difference. It helped a lot. Kept on meaning to do it, but never got round to it.

So, both of things are an improvement.

I'll be discussing pain relief later on again. Just see how things go.

I've let the meditation drop again. Got the mornings sorted out. That comes under getting the evenings sorted too.

It's not easy but you do it. And I have plenty of inspiration and support from other people in my life. Have their experiences in my mind and it kinda helps a lot. Means I don't feel alone with what I'm coping with. Their experiences are there with me and ofcourse mine for people I know who're going through similar things.

I guess it'd all be very different without them. Sometimes just a sentence'll pop into my head and it helps me sort things out with what I'm doing.

I still would like to find out more about pain control through meditation and things like that. I know some pain clinics teach it. I believe some people can control pain by up to 25%. That would be good to learn. Probably go and find out when I'm back in London, though maybe I'll find out before then from someone, you never know.

I think when the muscular thing's more sorted out, the other illness'll be easier to manage too. I've thought that for a while and something happened this morning which I think kinda confirms that.

I bought meself some ice cream as a treat today. But, yuck. Dunno why but I'm going off sweet things. So, no more ice cream I guess. Savoury things seem to be appealing more.

So much for the pea and mint ice cream receipe I posted up on the boards then!!! Guess I'll be going more for the lets cook loads of veggies together and add herbs spices and cheese(vegan or vegetarian) type thing.

The occasional pizza .. buy the base and ingredients and voila. I have made veggie and vegan pizzas before using bought bases so they won't be a problem.

It'll be nice when I do start cooking again cause then you can use combinations of herbs and spices to suit you. And there are plenty of meals to cook that hardly take any preparation time that are interesting and nourishing.