Today!!!!

It does look as if something's going on with the blisters. But we will wait and see. The more I know about this illness the more I realise this is the case. But that tiny one cleared up and a couple of them have a different hue to them today.

The back is painful to say the least. It's a slow process and the pain's in the small of the back right now.

Just going off to get dinner.

(Do you call it supper or dinner?) Guess that might have a bit to do with where you live. I went for dinner. Supper's that snack you eat just before bedtime.

Um, oh, whoops, well u know wot I mean.

healing

Going for healing doesn't mean that you feel that you are going to get physically better. I know the girl who went to healing at The Pump Rooms here did but that doesn't mean that happens to everyone. The healing can take place on a psychological level too. An acceptance of what has happened.

Well, my acceptance had already taken place to an extent I suppose, when I stopped being afraid of dying and felt that this life is a tranisionary phase leading to another form of existance. Everyone's spirituality is a personal thing but other people have been there with me along my journey.

I've found that regardless what that journey is people will make up their own minds and interpret things as they will. My interpretation of my journey is that life follows life and that I'll just get on with what life presents me with the best I can. Other than that I do not know.

So, when I went for healing I didn't go expecting to have some miraculous cure. I knew that it might just affect my attitude and I did infact feel better in that way because there had been some unrelated depression which was attached to a change that was taking place in my life. I seemed more bouyant afterwards and I think something I did today mightn't've happened if I hadn't gone along to the healing. It was about an issue of trust. Even though I knew there was no problem here if the slight depression had still been lingering from the other episode I might have chosen not to've done what I did.

So, maybe it works on different levels cause I did notice that was one of the things that had changed that evening. Maybe depression is the wrong word, because I don't think a psychologist would've described it as that, more sadness but a sadness that would've influenced me in this instance even though I knew there was zero problems here.

She knows I know too. Sigh!!!!! A good friendship, with all it's ups and downs, in the making. We've known each other a fair while now and there's no pseudo sweetness etc going on or it being one sided etc. Too much giving on one side or anything like that.

I'm much happier where I am now than where I was before with all the power over, or attempted power over crap going on.

I am just happily prancing off from all that.

Someone asked me if the woman I've mentioned on here before who was unpleasant knew a lot about the spiritual side of my journey and I said yes, a lot, cause she did. I'd told her a lot about me, other people, things I'd read. Discussed things with her. Oh, yes. And, they said, and she still behaved like that. That's why I think everyone's journey is an individual one depending on how they interpret things.

Maybe that's what life is about.

Anyway, that's what healing is about, it's not all about it being on a physical plane. It's about acceptance, maybe a change in attitude. And, maybe, sometimes, that change in attitude isn't totally tied up with what you went there for.

But, I did notice a change that evening which started me along a path which lead me to being able to be trusting here. I know I can but without going to healing that evening I might've left it because I was still in the process of sorting out the other stuff to a certain degree.

FOPP closing

http://news.bbc.co.uk/1/hi/business/6252300.stm

Dreadful news for the staff.

I've always loved this shop though I'd decided not to buy anymore music except maybe from Oxfam or places like that. A bit of meditation music and things like that maybe but that's all now.

I'm happy just listening to what's around. But, I'm sad to hear that the shop's closing and even sadder about the staff.

As far as the shop goes, there's something nice about looking through the cds rather than ordering them I think. But, times change, and on line shopping is one of those changes.

The illness

Someone asked if it can be fatal. Um, yes. It's one of those illnesses, bit like cancer. The body turning on itself and, yes, it can be fatal. At the moment mine is being held in check and it looks as if I might be beginning to improve but it's difficult to say. I know more about it now than I did a week or so ago and have more concise information.

I think I know when there'll be a better chance of things improving more rapidly but it's a slow illness to sort out and I have to accept that.

Waiting for the pain relief to sort itself out now. Always waiting for something to do with the medication these days it seems.

Such is life.

Up ... etc

Yesterday was quite painful with quite a lot of breakthrough pain .. but u get through it. Other than that it was quite a good day. Very warm and fuzzy. From all kinds of places, some quite a surprize. Don't know what it was about yesterday, but there you go.

Physically it was quite a difficult day though.

Today I had another rare illness to look up as I found out this morning that someone's mum has a rare illness. All good wishes sent there. It seems though that rare illness aren't rare in themselves, there are a lot of them about.

I'm just waiting to take my second dose of pain relief. I might add in a teeny bit of the herbal pain relief soon. Just a little bit at a time and see how things go. There are some herbs I shouldn't take or only take on a very temporary basis with this illness but this shouldn't be one of them.

I'm going to be trying a mixture of the granules with a pill for the MST pain relief and see if that changes anything. Best to see cause you never know if one thing will be better for you than another.

Right, time to take the pain relief.

More movement

Some of the muscles've moved again. I'd had a couple of days rest from it really but here we go again. It's good that it's sorting out but can break through the pain relief at times.

Wednesday .....

I wish that it didn't take the two doses of pain relief (four hours apart) to get moving in the morning. Still, it's the same for the lady in the flat opposite this one so I suppose it's not uncommon. I can still sit around and do things, just sometimes getting up and doing stuff isn't that easy.

The muscles've been moving again so it's definitely a two dose day today. Ouch.

One tiny blister/ulcer/whichever(?) has cleared up. The tiny one on the bridge of my nose. There were still problems with it when I was in hospital but it's ok now. It was a very small one though but it was one of the original ones from when the illness broke through the medication I was on.

Well, time to sort out the medication again.

Many thanks

Thankyou to my friend who travelled all that way to help me today. Many, many thanks.

Just taken my steroid sparing pills so an hour to go to dinner at least!!! Taken the evening MST too along with the third dose of pain relief. One more to go.

Seemed quite cool this morning when I got up but it's warmed up into a pleasant day here.

Veggie cottage pie again tonight. Shop bought .. I got a few in but'll soon start making them myself.

With a pickled egg, slice of bread and marmite. Well, I was told a while back!!!!! Bit of fruit and a yogurt.

Coping skills

I'll be making a card in the next few days to send to someone to say thankyou for showing me some coping skills. She's been ill for a long time with another auto immune illness, there seem to be a lot of them, and was generally quite chatty and cheerful even though she'd been through some really awful times with it. I've noticed that a number of the women I've met in this position seem to be doing much the same. Met quite a few IRL and on the boards and we're getting to know each other.

It's learning coping skills I guess so that you can get on with things even if it does mean having to change things like becoming a more indoors focused person when your focus has been on the outdoors.

It took my thinking back to the young woman I mentioned a while back who had had to leave home. She had no coping skills at all. Quite a lot seemed to be down to the fact that she thought she could manipulate situations. Her mum said she thought it was a sign of the times of the 'must have' attitude along with advertising and things like that and it had started to move into all kinds of areas of life and then when it doesn't work the person is left with no coping skills.

Well, I'll make my card soon. We actually had quite a lot to share cause I gave her information that helped her too. Just like with the honey too. I'd offered the lady a guitar cd rom cause I won't be needing it anymore obviously. That part of my life is over now .. she gave me some information that has really helped me, not just about the honey.

....

Just getting my 2nd dose of pain relief down and then I suppose a wander out in search os something with echinacea in it. I had tried a few pastilles containing it a few months ago but hadn't eaten many cause I was quite sceptical but I'll try again. I think I might have a slight cold as I've had slightly wet eyes in the morning again. Nothing to do with my long term illnesses and more likely to be a cold.

No cough or phlegm back though.

Tomorrow is bone sparing pill day so must remember to get that down half an hour before food.

Done

Though not without a bit of a wandering mind at times. But that's really what you expect to start off with. I think part of it is releasing tensions as you start stilling the mind through concentration on the mantra.

It's difficult with the illness too.

So, now to sort my medication out and then to get some rest.

Echinacea

http://news.bbc.co.uk/1/hi/health/6231190.stm

It's worth a try. And, I think I will.

Still sitting here waiting to take my last dose of pain relief for the day. But at least I'm earlier than last night. I seem to be wanting to turn in around ten to half past so tonight I'm only an hour out.

Going to do 15 minutes of meditation now.

Meditation

Maybe just a little meditation this evening and a few very gentle exercises. Just slowly starting to sort things out.

I want to find out if there's any way of reducing pain through meditation. If you can affect the neural pathways or whatever they're called. I know it'd only be a reduction but that combined with the pills would be good.

I know that some pain clinics teach something similar.

Vrooooom

The day seems to've gone very quickly. Pills all took except for the last thing at night ones. I left them too late yesterday. The day before I took the MST too early for me. I like to leave the evening tablets of that reasonably late as they see me through the night. And the effects drift into when I wake up.

So, I suppose I better go and put the oven on. Be waiting for an hour before I can eat because I've just taken the evening dose of the steroid sparing drugs. I'm not sure why you have to wait. I might phone the company and ask because then I might understand about some of my other pills too. There are ones I have to take with food but will more be absorbed if I just take them with a little.

Who knows? Maybe for some medication it just isn't important.

Put up some pain medication info from one board to another and also found some info on the herbal remedy I've been wondering about which went up. Someone on the second board has shoulder problems from work and I was wondering if it might help her. It's good to belong to boards where people help you and then you can pass the same info on to other people.

You can always research on the net or pop into Holland and Barrett or somewhere similar for herbal information but it's nice just to pass the info on if people haven't thought about it.

Monday morning

Up earlier again though I sure would like a couple of hours more sleep but as I'm waking round this time I might as well get up and take those steroid sparing drugs and sit around waiting til I can have breakfast I guess.

Hip muscles seem a lot better this morning again. The additional pain isn't so bad. And my eyes seem a bit better. Have to see how that goes.

Sunday morning

I'm glad I grew up back in the 60s because it suited me. Not saying that it was perfect or anything because it wasn't. Certainly not the Utopia a lot of people like to think it was. If I was growing up today I know what I'd be like, much more serious than I was then.

Hopefully not downing shit loads of vodka at 15.............. didn't then and hopefully wouldn't these days either.

I was saying to someone the other day that while they're reporting about boys doing badly at school the girls could be dashing down to meet them if fashion doesn't change. With the boys a lot seems to be culture where for some learning is seen as boring and sissy. The girls just might be drinking their way down in some places. Alcohol messes up womens bodies quicker than guys.

Don't know what I'd do as a parent. Probably a mixture of being strict and talking. Someone I knew told her daughter to leave home a few months ago because she was drinking, stealing and was becoming violent at home. This'd started at 15 and she'd tried to get help but talking therapy can be thin on the ground these days. The police hadn't been helpful which hadn't been good for anyone concerned. Infact no one seemed to be there to help. The courts neither. The violence had been the final straw.

The girl wasn't happy but hopefully it'll change things for her. Talking to someone else who knew someone who this had happened to as well said that having to fend for herself had changed her life for the better. Though I think the girl who's just left home has far more problems because of the violence. I suspect to herself too. Still no help was offered, rather the reverse.

I suppose, to some extent it depends where you live, regardless of how much they talk about the UK binge drinking culture. Some places don't seem to have the problems others do from what I can make out.

Well, still listening to T Rex.

Mornin'

Yesterday there was quite a muscle shift which is proving painful and adding a weakness today. It's amazing how many different types of pain there are. Different sensations, deep dull pain to very sharp pain. This'll improve though.

I think you can get some kind of herbal pain relief cream I might try a little of there

Just ploughing through the various pills and potions here at the moment.

Listening to T Rex.

Very ... very ...........

tired though. And definitely time to go and get some sleep.



Picks up oramorph and glass and potters off to bed.



And, do I feel tired. And the pain ain't too good.



I don't know. Me doc asked me if I wanted to stop some of the oramorph and increase the slow release morphine to replace it. Not increasing the overall dose just taking it in a different way but the oramorph does help as it is at the moment in conjuction with the slow release pills. It would be more the equivalent of having a patch I guess .. though a 12 hourly one but a very strong one with perhaps a dose of oramorph towards the end of each twelve hours.

I might try it. I mean it's not as if it has to be permanent.

And .....

Though it's been a long time I finally got the last part of the legal situation pointed out to me by events. All I can say is that I really didn't know that.

Astounding. Brill etc, etc.

I'd obviously been too ill to procede anyway. I'm not quite sure how I feel in that respect now but I'm still within the time limit but hopefully I can get it started next week. It's so much easier now.

Can ask someone else anyway. As I said it's so much easier now. Before there were so many ins and outs. Now it's approaching from a different tack using the previous case for as background.

It was very difficult before and I was very dubious about asking anyone else to handle it because it was so complicated but all that, while important, isn't the focal point anymore. Well, not to such a degree.

And, it really was something that I didn't know. Just a little fact out there.

In fact instead of the hours and hours and hours it'd've taken to go through and sorting out legal points it can probably be done in half an hour or less. Well, just naming the points anyway.

Late!!!!

Returning rather late I guess. But ... then, when have I ever been on time for anything!!!!

Mum was lucky though that the illness didn't reach these proportions while she was still here though the illness would've started while I was here with her, during the last months in the home or while she was here with me in the flat.

Waiting for the oven to heat up now ... but just to put a veggie cottage pie in. Have to admit I'm treking back towards a more vegan diet again though but not totally. I actually posted up a receipe a couple of weeks ago on a board, admittedly one I hadn't tried .. but pea and mint ice cream did sound interesting. And I guess that you can probably make it with soya milk so you can veganise it. It was the picture that caught my eye. Well, makes a bit of a change.

This doesn't mean that I've turned into a cook while I've been here .. just that I like picture of and the sound of pea and mint ice cream. Saw it in the hospital while I was reading through the Sunday or Saturday papers.

This wasn't a reaction to hospital food, really it was very nice ... especially the porridge and soup .. there was only one soup in their range that wasn't veggie so I was ok there. And I was sometimes offered extra if there was any extra to be had.

You know, soup, soup .... glorious soup

and

porridge, porridge .... glorious porridge.

Pity the hospital's not in Dorridge in a way or we could have a poem going on here. Not, ofcourse that I'm suggesting the hospital should move to Dorridge so non poets like me can rhyme porridge.

Padding the paws to a new address

Lemuures blog has moved from

http://lemuuresblog.blogspot.com/

to

http://blogginglemuures.blogspot.com/


Practicing moving and a change is as good as a rest.

Careful

I'm very careful about taking my pills now after someone from home phoned the other night when I was taking them. I was taking the steroid sparing drugs which are very strong pills and after I put the phone down couldn't remember if I'd put out two or put out three and taken two. I would've been ok if I'd taken an extra one but this is very strong stuff and it's not something you'd want to be doing too often I suspect. They are actually drugs that are used to stop rejection after organ transplants as well as coping with my illness.

I'm not sure about the MST either as I'm on a high dose of that too so from now on it's all monitored very carefully. I might go and get a pill box to sort them out in every morning because this is strong stuff. You can get distracted as I found out. Didn't think I would after so long, but I did.

Bought some reduced notebooks from The Works to start getting on with things again. Bought a little language set from there for £2.99. 300 words to learn which is something to be getting on with while I'm being got through this. And, I think it's enough at the moment!!!!

You can always rely on The Works to come up with something though!!!!

And, there's no point getting down about things. Yeah, the illness is nasty, the pain's bad but as I said in the hospital I just get on with things. Obviously .. the best I can. It was very difficult when I first came out of hospital but now that I'm feeling a bit better, medication changed a bit, getting through that difficult time is making it easier to cope with now.

I think if I hadn't fought and coped how I did then things would be a lot harder now. But that's just me. I guess other people react differently and have other ways of getting through and coping that suits them better. Different things for different people.

The rain's stopped. Guess I better go and get some tinned tomatoes. I have veg and tins of lentils etc. Though when I'm a bit better they'll be exchanged for dried ones. Soak, cook and freeze them.

Back in fer a top up.

Back in to top up the pain meds, that's all I take middayish. The steroids are taken in the morning and the steroid sparing drugs are taken morning and evening. The rest all go down in the morning too. The pain meds are spread through the day.

Then go out and get some groceries. I bought some veg to make ratatouille yesterday or something like it. Got an aubergene, courgettes and a pepper which I'll add to a tin of tomatoes once their cooked. Even in me vaguely cooking days I was the master of the one pot meal as near as I could be. But I guess I'll be adding some veggie sausages to this .. cooked in the oven then chopped up.

Could add lentils or baked beans or any kind of bean and herbs and/or spices to change the texture and flavour and get all kinds of meals. Or, I suppose have one of me pickled eggs to garnish.

The possibilities are endless.

Anyway, healthy eating is the way to go. After all what you eat builds and keeps your body functioning. And, in this kind of way, is easy to manage cookingwise .

Sunscreen

Off to check out the possibilities of vegetable based sun protection and talk this over with a pharmacist as the usual chemical ones aren't as suitable as they once were at the moment. I'll also be eating carrots as I read some time back that beta carotene can help to protect the skin. Well, better to eat some carrots than not.

I have my hat from the Peace Festival too. A case of the old Australian Slip, slop and slap advice. Basically cover yourself up, melonomas aren't nice.

There's so much to sort out.

Saturday

Up earlier this morning though still feeling very tired. Medicated and all my medication ticked off as I take it. There's so much of the stuff it's best to do this. I need to order some more diflam spray too. Monday I guess or I could pop the request through the door today. See how I feel.

Anyway glad that the pain relief is more or less sorted out and that I know that I can go into the surgery and talk to my doc about anything that comes up knowing that he'll do his best for me. He knew the name of the other drug I'd been offered without me having to say hardly anything. I'd forgotten the name momentarily. For now I'll be sticking with things as they are and on a workable dose.

Said to him about mum, cause he looked after her during her time in the home, that I was now doing some of the very gentle exercises I used to take her through that we'd been taught up at the rehab and that the knowledge I had from looking after her was making things easier and more bearable for me.

Suppose it all does really. Massage those footsies and shoulders. I remember mum's feet as being heavy, though she was small, because there was a kind of resistance there as you lifted them, nothing to do with their size, just this stiffness and resistance.

Do the rehab exercises and adapt a few yoga exercises, though a lot are very similar anyway, so that I can do them. I've got leaflets with others on too to leaf through and choose which I think could be suitable.

Meditation for relaxation and it seems to increase me endorphins.

See how it goes.

The appointment

Well, off to see my doctor. And plenty of reassurance. I think I'll be able to manage on the pain relief at a good dose as it is now rather than having a new medication added. Which is what I'd prefer as I don't seem to be getting any really noticeable side effects from it. I know from way back when I was in my teens that this might not be the case with this other medication as a similar medication didn't agree with me.

Might be ok but better to be using what seems to be ok at the moment.

My cough has more or less gone.

I'm using a tea tree oil lotion for my blisters/ulcers which seems to be suiting them well too. Obviously this isn't healing the illness but it is working well just to dab on them. Just started a couple of days ago and it appears to be good stuff.

I forgot to ask him about the herbal pain relief for muscular problems. Might phone down or ring the company up who makes it or the companies who make my steroids and steroid sparing drugs ........ or everyone!!! I'm told that for some people it's very good but I'd like to find out if it's got any contra indications.

It'd be nice to know that there's something else there if I need it.

What 10 bands/singers did you listen to the most/like the best from the 60s/70s

Just another topic off one of the boards. A nice topic to read through.

What music did I listen to most way back then?

Guess .....

Country Joe and The Fish
Donovan
Buffy Sainte Marie
The Stones
Joni Mitchell
Quicksilver Message Service
Hoyt Axton
The Doors
Jimi Hendrix
Tyrannosaurus Rex/T Rex


Think those 10 (ish) probably got the most play.

Thursday

I'm sleepy today. Just want to curl up and sleep really. I stayed up too late last night just thinking a few things over and even though I got around six hours sleep my body wants routine and at least eight hours I think. It was important that I got this sorted out and the questions I want to ask but I should've left it to this morning.

Still got a slight waking cough but other than that things are fine. No more coughing spasms or loads of phlegm.

Got to get the pain thing sorted out though.

Reminder

Do not go out without having taken enough pain relief or your attention'll be on the pain not what you're doing. I need to be on the dose of pain relief I was on in hospital. The pain still breaks through some but it's a dose I can manage on ok.

It's not going to be forever. I was offered another drug to add to the cocktail of pain relief while I was in hospital but I said no. I might look into it again but just for when there's been a bad break through.

Apart from that I've had quite a sleepy day. Writing out some things for when I go to the doctor and getting a couple of other things sorted.

Cough is still ok. Still slightly there but just so much better and without oodles of phlegm.

Off to do dinner and have a look at one of The Works language tins. Little tins with some language cds in them. £2.99 .. not bad, huh.

The honey

Back from my out patients appointment. Told my doc about the honey and he said it's often used for things like leg ulceration. My illness is different as it would have to affect something else to heal them.

But still the cough is very light now and I'm not producing all that mucus I have been for the last week and a half or so.

I see the jar I have is 10+ strength. Dunno if that is the lowest strength or just the lowest on the shelf at the time I bought it. It was a bit more expensive than Jane had said hers was and I saw some cheaper in the Warwick H & B.

I'll work my way through the jar. My doc doesn't think there should be any side effects but it's still best to keep an eye on my blisters and ulcers just in case

Manuka honey

Two people recommended that I try it so I did. Very pricey I thought but worth a go so I bought a jar of the lowest strength from Holland and Barretts which was what one of the people had used and had been pleased with.

My horrible cattarhy chough has cleared up. I've been coughing a little but not like I was where a tickle or a cough would start a stream of coughing along with a load of cattarh. It changed a couple of hours after eating it.

Maybe it was just coincidence. Who knows. But I'm pleased because the cough was causing a lot of pain along with my other symptoms.

Monday morning

Up etc. In a better frame of mind I guess. Still feeling tired though. The mornings are always difficult waiting for the pain relief to kick in and sorting out the medication around the food and waiting for all that medication to sort itself out.

Breakfast: yogurt, a couple of small ricecakes (with chocolate!!), fruit and a few oat bakes.

Listening to: sounds of the ocean waves

Bit of a grey day today. Seems we're getting sunshine and showers but that's nice enough. Guess that's just right for me now!!!!!

Healing

I was late ofcourse but I went off to the meeting/service .. depends if you're of the religious or philisophical persuasion. It's like Buddhism and there are the two branches.

I stayed afterwards for healing. First time I've ever been for that though I know really that the healing started when the illness showed itself and I wasn't frightened of dying. For an auto immune disease it's a pretty nasty one. Just the body deciding to attack itself and break down. I suppose rheumatoid arthritis must be one of the most common auto immune diseases. It's actually very, very similar to this one .. it just attacks the joints rather than the skin.

If I hadn't been there I probably would be feeling very different about the illness. So, healing started through being there as I slowly accepted a belief in life after death.

I arrived there two weeks before the illness showed itself and I had to go into hospital for the first time. Time has taken away the fear though when I have a cold I get a bit whoozy about things.

It's taken a long time to get through to me I guess. This last time in hospital totally convinced me.

And friendship .. well, I have people in my life who I can trust and to me that means a lot. That and my belief in passing over will see me through all this. As I said healing started some time ago.

Friendship and when the well's run dry

Now, I don't mind helping other people. Infact I've done a lot of that in my life and I don't regret it but sometimes you realise situations come up where you have to rethink things. I'm annoyed. I've got to the stage with someone where while they're on the phone I feel like waggling my arms in the air and pointing the fingers all over the place.

I've done a lot for this person, got them into hospital, kept an eye on them afterwards and realising things didn't seem right was around to get ambulances when they needed one and no one else was there, possibly saving their life. Well, certainly saving their life I guess. And through the years a hell of a lot more.

Sometimes in a friendship it is about one person for a while if they need help but things even out as time goes on. In this one they haven't. An hour or so on the phone yesterday ... all about them .... naturally. In the end I excused myself to go and make dinner. I realised that they hadn't even asked how I was.

Answer if they had: Well, actually bunged up with morphine etc and a cold, though I managed to sneeze some of that out finally yesterday, fighting a very serious illness and not long out of hospital again. Well, the answer would've been caught in that somewhere.

You know, there's umpteen million billion things to talk about I guess but five minutes could've been given over to me considering the other fortyfive or so was all about them. There was a bit of neutral stuff as well to start off with.

Getting dictorial as well.

Friendship is a two way thing and this one has been too one sided. The well's run dry. There are no comparable problems in their life at the moment. I don't need this.

So, guess I'm not one friend less in my life, just one person less.

The Peace Festival

Well, no trousers again!!!! There were a few pairs on the stalls but not what I was looking for. Still I know where I can get them when I'm feeling a bit better. I did find a sunhat though which is going to be very useful this year cause obviously I'm going to have to protect my skin as much as I can.

I'd thought it was next weekend but someone phoned and said no, this one, so I quickly pottered down hoping that along with everything else there'd be a pair of trousers I'd want to buy but again trousers were pretty thin on the rails and I wanted a rather plainer pair than the few they did have there. I picked up a black pair in one of the charity shops on the way back. Didn't stay long cause yesterday I was just really tired. I bought a couple of butterfly rings, and some bracelets made from tiny beads woven into a flower desigh and a couple of hand ornaments where part is like a ring but is also attached around the wrist.

And, I did get caught in the rain though didn't get very wet as it was on my way back and I dived into a shop. The raindrops were really large. The downpour was rather like a wetter version of the hailstorm of a few weeks ago where there were very large hailstorms, though I just watched that through the hospital window rather than being out in it.

Partially medicated now. Been waiting after taking the steroid sparing drugs that should be taken an hour before food. Go and get breakfast now so I can take the pills that shouldn't be taken on an empty stomach.

Nicer day

Just a quick post. Up, medicated etc. I've found out now that my new tablets should be taken an hour before food .. ho hum .. started doing that yesterday thanks to Dr Taigbee and the team frm B.A.D (British Association of Dermatologists). I wonder because of absorbtion, you know, whether some of the medication might go out with the ruffage in the food. Some can't be taken on an empty stomach so I just eat a little with those and take my tummy protector pill as they're just once a day. Worth asking about I guess.

Taking some of me papers out, it's easier now with the pain relief to get things sorted, though not doing too much sorting out at a time.

Much nicer day than yesterday too. My cold's a lot better and there's a mixture of sunshine and clouds out there at the moment rather than yesterday's downpour when I wanted to go out.

Tuesday

Was back at the hospital as a day patient today. I said that my eyes'd seemed a lot better since the increase in medication. They said there seemed to be other improvements too. I'm feeling tired today and I'm still rather snuffly but that's down to me cold I guess. We'll just have to see how it goes.

I'll start wearing my sunblock now too that I'm out of hospital. There were posters from the people at B.A.D (British Association of Dermatologists) on the walls in the Dermatology section.

http://www.bad.org.uk/about

so I guess there's probably quite a bit of information on their website or links to other useful sites. Ah, yes, if you click on the skin cancer .. advice and info logo there're leaflets to download. At the hospital they'd done a little wall display to go with Sun Awareness Week last month.

Anyway, I'm going to have to be careful.

Bought a bottle of diet coke today. I have to be careful with that too it seems. What's your favourite drink? Diet Coke. Apparently fizzy drinks can interfere with the absorbtion of calcium so I mustn't drink any fizzy drinks when I chew me calci chews or eat things with calcium in them because they will inhibit calcium absorbtion.

The Tens machine, yoga and pain relief

I'm using my Tens machine and while I accept that there's not much that's going to help the pain that much at the moment I'm not disappointed. Today has been a mixture of a considerable amount of pain relief, then using this machine this evening and a few minutes spent doing some very gentle stretching after reading this:

http://news.bbc.co.uk/1/hi/health/6725967.stm

This interested me as most of my muscular pain is in my back but it amazed me just how many people suffer from low back pain ... 49% of British female workers and 40% of men. That's a lot of people.

http://news.bbc.co.uk/1/hi/health/4122380.stm

My illness is rather different from this but it is affecting my back a lot at the moment which is part of the reason I take the morphine etc, ofcourse I take it for the other illness too. It's as sore as it looks.

Still, I've started on the new increase of medication today. Started using the Tens machine and done a few very gentle stretching exercises. Just the Lion pose while kneeling, and standing stretching my arms into the air one at a time ........ but you could do that sitting down.

Looking after mum certainly prepared me for all this. I often think of her now and how she coped.

I was offered a couple of sessions of free hypnotherapy which I'll be accepting. And today I was talking to someone who's learning reflexology. She said that this is becoming very popular round here now. I can't have anything like that really at the moment. Not reflexology, or massage, or even, I guess, any Bowen therapy, until my other illness is under control.

Anyway, the steroid sparing drugs were upped today by another gramme and we'll see how that goes.

I've decided that I probably will learn reflexology, though just from a book. I can still remember all the massage techniques and reflexology would be a nice one to add to that. The massage certainly helped mum, think it was the highlight of her day when she was very ill.

Up, fed (part *********!!!!!!)

Up, eating breakfast and part way through sorting out all this medication. Today is the morning I have to wait half an hour after taking one pill before I can eat breakfast. I'm also increasing the steroid sparing pills, waited a few days because I've had a cold. Had written it all up on the notepad on my desktop so that I'd remember.

Well, a couple of hours have gone by since downing the first extra pill and things are fine, not that I've had any trouble with these pills anyway. They suit me much better than the first steroid sparing pills I tried.

I wrote up on one of the boards about how different medications had affected me. Apparently I have a very good reaction to morphine because it doesn't slow me up in ways that might be expected. Guess I've been really lucky there. Though it's swings and roundabouts because another pill they tried me on which is similar made me feel really ill. One of my consultants was telling me that he couldn't take morphine because just a tiny bit made him feel nauseous. But maybe he's alright with the medication that I couldn't take.

Not that many people'll want to know (!!) but quite a few people already do anyway but morphine doesn't bung me up at all except if I have a cold and then it affects contractions which can make things pretty unpleasant. But I have my trusty box of movicol sachets to help sort things out. Just one sachet did that on Thursday and I've been fine since. But I've been told that it's more or less a given that the morphine as well as the other pain relief I take should bung me up. Just goes to show how different medications can affect different people. Just in the same way that one of my consultants can't take morphine while I couldn't take the other strong pain relief I tried in hospital.

I also have an allergy to a couple of antibiotics and soluble paracetamol is much kinder to me tum that taking it in undisolvable form.

I guess it's really worth taking note of both good reactions and bad reactions to medication and discussing alternatives if something seems not quite right. There are some side effects I have to put up with from the medication but on the other hand I have a pill to protect my tum that works much better than the first one we tried.

Well ....

Lunch is ... some organic spicy lentil soup, a few grapes and a nutri-grain bar.

I might potter off to spend me medical voucher!!! Wasn't sure whether to spend it or frame it!!!! It's pretty cool for my consultant to do that. At least 40 or so local GPs know a lot about this particular illness now. And probably more about related ones too as there was a kind of a teach in later as well.

As I said the team here are in touch with the team at St Thomas' where I will be returning to at some point. They're finding out more from the consultant there in charge of the speciality dept.

Going off to wash me hair with my special shampoo. I have new face washing cream now too to soften the skin before using the steroid ointment. Just a hint if you're presented with the choice between steroid cream or ointment, steroid cream stings a lot ... steroid ointment doesn't.

Go out for a bit. Do a little bit of clearing and sorting

Up etc etc etc

As usual .... up, fed and medicated. Still got a slight cold but it's not too bad. Been round the boards playing games and chatting a bit. E mailed etc.

What are you listening to? A Tranquil Summer Garden. It's lovely and peaceful once you realise that the buzzy insects aren't wasps and bees. Just peaceful and relaxing.

Breakfast? Yogurt and a Nutribar. Well stocked up there with both soya and dairy yogurts for a while. Nutribars too.

Drink? Ribena Lite. Nice and refreshing.

It's nice to be out of hospital and do things in your own time. Make the most of it cause it's quite likely I'll be going back soon to try out a new treatment. I might not need it but we shall see. I'm holding back starting the new increase in my medication for a couple of days until I've got rid of this cold or at least until I'm over the snuffles. I've an idea what's really going to help here as far as my initial illness goes. We shall see there too.

I was in there a long time before comparitively speaking seeing different people arriving and leaving. The majority of people were in their 70s and 80s but there were people in their 20s too and all ages from there upwards into their 90s. We were in the "critical" beds where we required a lot of nursing care but weren't up on the surgical wards where I'd been last time I was in.

I tried to be as independent as I could cause some things sure take a long time at the moment and I'd learnt how to manage some of the things I had to do that take up so much time. It was difficult at times though. I've said that I'll write out what I did using the things I brought in myself that I'd been using here. It's just cleaning up as easily as possible and with as little pain as possible. Not just for people with my illness but I guess for people with some forms of cancer and also other related auto immune illnesses to mine.

I went to a skin teach in with some local GPs while I was in hospital and my doc gave me a £10 voucher for my time and trouble. I was also there to talk to students. You do your best because it will affect other people in the future even if they just have a related illness to the one you have or even just related symptoms.

I came out to a conversation about the future of the NHS with someone on the research side. My reply to what I was told was that a sense of community is what's needed to tackle these things. Things need to be discussed and people need to care for each other.

Anyway, I'm sleepy and snuffly this morning. Fed and medicated though and'll do a little sorting out. And might try the Tens machine I've bought and see if that helps with the pain. The young woman who sold it to me said she thought I'd get over all this when I explained what was wrong. It's a tricky one though. I'm doing me best!!! If the Tens machine does help I've an offer to send off for for a mini tens which is a smaller version of the one I have and more mobile. I'll have to think about that.

It seems some things are more effective for some people and for different illnesses. There are different forms of pain so I'm just going to have to see how it goes. First step: read the instruction leaflet!!!

Helping

I've got a cold that didn't make yesterday very easy but I feel a bit better today. Went into hospital as a day patient on Tuesday. I had an early appointment but had been told that I could arrive when I could in the morning. I was a little late. 10.10am was just too early.

I went to see someone on the ward and was sad to find out that someone else had passed over. A lovely lady, fond of tiggers and teddy bears. I'm glad we made each other happier by being there together. Just chatting together and being able to rearrange her TV how she wanted it etc. We had a kind of agreement in our litle bit of the ward that we'd help each other as much as we could.

It helped a lot.

Been a pottering

Just a quick post. Walked up to Sainsburys, pain cushioned somewhat by the day's pain relief. Bought some breakfast bars and yogurt, all light stuff and pottered back but still had to get a taxi from the station as things were decidedly tricky by then. But it was worth a try.

I'll try again next week. But still that'll have given my muscles a bit of a work out after not being used much for all these weeks. There are other problems to be sorted out too. I'll measure how things are progressing as time goes on.

Things'll take time.

There's a thread on one board .. "People who inspire you" .. well, I've been inspired again when I was in the hospital. The two people I left my snoring cow and snoring bear with certainly inspired me as did the woman who'd been diagnosed with MS 17 years ago in her 20s .. and Jane and others.

The illness I take the steroids for is slowly being sorted out. It seems that I have a very healthy and robust immune system in most ways except for this genetic illness and the fact that it is so strong makes fighting this particular auto immune illness a bit harder than usual. The steroid sparing drug I'm now on takes eight weeks from when you start taking it to really work but it has already produced changes from when it was added to the cocktail of medication I was on before going into hospital. The dose can still be upped and there are other things that can be tried. Warwick hospital and St Thomas' are liasing about the treatment as St Thomas' has a speciality department that deals with this type of illness and does research.

Well, perhaps I shouldn't've done the Sainsbury's walk but I did get a taxi back for the last bit .. perhaps just a potter around the park would've been better.

Deja vu

And here we are back again ..... up, breakfasting and half way through getting the pile of medication. I've done the pain relief so far and am just about to move on to the steroids etc. The pain relief can be taken without food but with the steroids it's best to've eaten something first as they can be a harsh on the tummy. Needless to say I have a pill for that too and with taken the precaution to eat before taking the steroids and steroid sparing pills things are ok.

Anti inflamatory pain relief such as Ibuprofen and aspirin are best taken with food too for reasons a bit like the steroids .. they can be a bit harsh on the tummy.

Whoops!!!!!

Almost fergot the calci chews and vitamin tablet!!!!

Up late ........

Up late and then having to wait half an hour after taking one pill before I could eat. Fortunately I only take this one once a week. It's a pill to safeguard against some of the effects of the steroids.

Anyway breakfasted and medicated now!!! And I must go and get ready to go out cause it's so late.

Out of hospital

As for my health I know the next few weeks aren't going to be easy. I've plenty to do but coping with the physical side is going to be quite difficult. Seeing the bravery of people in the hospital'll help a lot though. It's not just the spiritual side of things that gives the strength to cope with this but also the people I've met. Well, some of them had stories to tell me that added to the spiritual side but there was also a bravery and strength to help as well.

And with all this going on we managed to laugh and joke.

I left me snoring cow and me snoring bear to look after and be looked after by two of the patients. They know what to do. Snore zzzzzzzzz snore. A kind of alternative to a sleeping pill. It's a bit like yawning, the bear starts snoring and you get all kind of sleepy and start snoring too.

The next few weeks will be difficult but I'll get through them then I can go back.

Now I'm going to sort me meds out and get me breakfast. There was porridge everyday in hospital. Really nice too .. just like the soup!!!!!

Connections

One of the reasons I wrote more about my ex .. um .. 'friend' way after she should've been firmly ousted from my life was that on one of the message boards I belong to someone knew someone who has a 14 year old daughter who was going to run away to meet someone who had been grooming her on the net. There'd been a quarrel at home and the girl was going to go to stay with a 40 year old man she'd been chatting to over the net. Fortunately she changed her mind and came home and fortunately her parents found out what'd been going on.

Now, obviously, an adult wouldn't suggest a young girl of 14 run away to stay with him if he had the young person's interests at heart because running away to stay with someone you've been chatting to on the net is very dangerous. He'd've suggested phoning a reputable and well established chat line, the social services, the police, her school, friends or relatives.

This man had suggested running away in secret to be with him. He'd ofcourse been groomimg her by being pleasant to her and agreeing with what she said and sympathising and then when she was upset at home saying I understand so come and be with me.

Fortunately she went back home before meeting him and fortunately things are being sorted out in a manner which isn't putting her at risk.