Long overdue

Gosh, I hardly know where to begin.  I've been wanting to update you for such a long time, but it's been an extremely difficult and traumatic few months.  Five months.  Gosh, it's five months since I last wrote here.  I can't possibly tell you all that has happened in that time in one post, so I shall just aim to cover the immediate period following my last post.

I started the betamethasone a few days after last posting here, while I was still in hospital so they could watch for any immediate difficulties, and we did a straight swap from 60mg prednisolone to 9mg betamethasone.  Thankfully the swap was uneventful and I was able to go home a day or two later.

It very quickly became apparent that I was absorbing the betamethasone very differently to the prednisolone.  The first noticeable difference was that I was bouncing with energy.  It was a false energy that I did know from previous very, very high doses of pred, but never to that extent.  I easily managed on four hours of sleep a night, and this was immediately after the admission when I knew that my body was actually exhausted and needed rest, but I couldn't.  I was bright and was eager to get on with a big declutter of my flat, starting with the bedroom.  Every day was filled with sorting through everything in my bedroom - in the desk, in the wardrobe, under the bed, in files I hadn't looked in for years.  I shredded years of old diaries, bank statements, old business paperwork; took bags upon bags of things to the tip; donated at least nine black bin bags full of things to the charity shop; cleaned the whole room to within an inch of its life; a friend ended up redecorating part of the room for me; I dismantled furniture and constructed new Ikea furniture; and then I started on the living room.

It was very hard work, but I had the energy so I got on with the decluttering while the energy lasted, because I knew that as the dose of betamethasone was weaned down the energy would begin to falter.  Of course the activity made me sweat, but I sweated excessively, even sitting shredding hundreds of pages of paper a few sheets at a time would soak my clothes through with sweat.  But whilst I was sweating, and sweating, and sweating my body was swelling, and swelling, and swelling with fluid. However much furosemide (diuretic) I took it did nothing to rid me of the excessive oedema, and I was/am on a huge dose of 120mg twice a day.

Then there was the hunger.  Of course, using a lot of energy with activity meant that I needed more energy in the form of food, but not that much more, and my hunger was excessive for the energy I was using.  I tried not to give in because I am already far too overweight and in desperate need of losing some, but it was incredibly difficult.  My hunger was never satisfied.  I could eat what I knew to be a normal-sized meal and I would feel as though I'd had a micro snack.  I could eat what I knew to be a big meal and I would feel as though I'd perhaps had a light spot of lunch.  It was awful to be permanently uncomfortable with hunger yet seeing the weight pile on, which combined with the excessive oedema to change my appearance significantly.

My face, my huge moon face, lost all definition.  My nose shrank into my ever growing cheeks, and my chin and jaw were lost to the depths of my neck.  This look is typical of someone on high dose steroids, and it is rightly named because the face becomes spherical like a full moon.  Yes, I have been moon faced for many years, but never to that extent, never to the extent where it felt like a facial disfigurement.  A whole body disfigurement with the extra weight and fluid too.

The disfigurement continued because my skin couldn't keep up with the rate at which it was needing to expand, and my whole torso, tops of my arms, and tops of my legs have become covered in huge, ugly striae.  These are essentially stretch marks, but they are so much more than stretch marks.  They are deep purple and red lines, some as wide as three or four centimetres, almost looking like huge lacerations snaking their way up my body and down the backs of my arms.  The skin is so thin that in places I can clearly see the fine veins below.  Sometimes they split and I bleed.  They happen quickly too, so quickly that I feel them happening - the fibres of my skin ripping apart, forever damaged, and now that I've lost a little of the weight again, the skin hangs limp, wrinkled, flaccid, separate from the tissue below so that I can pull it with my fingers like stretched chewing gum and just about see my fingers through the two layers of skin pressed together.



This is not me, but it may as well be.  This is what my torso looks like, except that the striae on the front of my body go all the way up to my breasts.  It is at least a disfigurement that I can mostly hide under clothes, except those at the tops of my arms and the top of my chest that often peak out from under my T-shirts.  Of course, there is no hiding them from a medic when I am examined, and although I warn them, and they are used to seeing such things, I still see the shock flicker across their face before professionalism hides it again.

I am told that over time the colour will fade, but I know that the skin will not, cannot, repair itself, and although they may become silvery, they will always be visible.

The plan was to try to reduce the betamethasone dose fairly quickly so that I could try to get to a more normal prednisolone-equivalent dose.  I was nervous about doing this because of so many failures of dose reduction with pred in the past, and the resultant life-threatening asthma attacks, but given the rapid destruction of my body I was willing to try.  In some ways this was made easier by the fact that each betamethasone tablet was a much smaller dose than each prednisolone tablet, so my lungs kind of didn't notice the reduction so acutely (although it also meant that to begin with I was taking eighteen betamethasone tablets each day!).

I thought that the quicker reduction in betamethasone dose would mean an equally rapid reduction in side effects, but in actuality, the only one that did subside as quickly was the false energy.  That was actually something of a relief, because while it was good to be living more in the same time zone as everyone else around me, I could feel that my body was, in reality, completely exhausted.  But one side effect that actually continued to increase was severe weakness in my thigh muscles in particular, but other muscles too.  I quickly became unable to stand from a chair without pushing off something, and if I ended up on the floor (as is the wont of someone like myself with POTS) then I was basically stuck until someone could help me up or I could somehow clamber onto my footstool and from there shuffle onto the sofa, where I would still have to brace myself for the huge effort and several attempts to get to standing again.

I went to my GP in the end, not really because I expected him to be able to do anything, but simply because the whole combination of all the symptoms, and their rapid progression, was getting to me.  I came away with an official diagnosis of Cushing's Syndrome. Of course, because I have been on such high doses of steroids for such a long time, and because I am aware of their many, many side effects, I have been known about Cushing's Syndrome for a lot of years.  I have known that I have exhibited many signs and features of it at various times to varying degrees over those years, but there was still something rather shocking about receiving the diagnosis.  One thing I have had particular difficulty with is the prognosis as fifty percent of people with untreated Cushing's Syndrome die within five years of diagnosis.  My CS cannot be treated as the only treatment is to remove the cause, which in my case would be to remove the steroids.  Remove the steroids I die either of an asthma attack or adrenal crisis, as my body is now dependent on the prescribed steroids because it can no longer produce any of its own.  I can only hope that I am in the other fifty percent.

Whilst all of this was going on with the explosion of betamethasone side effects and the additional diagnosis of Cushing's Syndrome, another problem was developing.  There was a supply 'issue' with the betamethasone at manufacturing level.  I had been given enough in my initial prescription to keep me going for quite a while, but before too long I needed another prescription.  My local pharmacy was able to honour the first three hundred tablets on that prescription, but that wasn't going to last me all that long, even though I was reducing the dose and therefore eking out the medication.  I managed to get in touch with my consultant's secretary and Dr H wrote a hospital prescription for me that he hoped would tide me over until my local pharmacy was able to source the rest of the meds they owed me.  The hospital out-patient pharmacy had some, but not enough, and they had to do some internal negotiations to borrow from the in-patient pharmacy so that prescription could be fulfilled.  They normally wouldn't be able to do this, but as the problem extended into community pharmacies as well then they made an exception.  However, this was not a problem that was going to be resolved in time for the next prescription, and before too long I found myself with only enough tablets to last about six more days and then I'd be without any steroids at all.  This wasn't an option.

I had been keeping J, my Complex Respiratory Disease Specialist Nurse, informed all the way through as the problem arose and progressed.  He liaised with my consultant, and the three of us ended up having a discussion about it in clinic, by which time I was about three days away from prescription crisis point.  Dr H had to come up with a new plan.

One thing had firmly been established - that I clearly hadn't been absorbing or utilising the prednisolone as I ought to have been, and that I clearly was absorbing or utilising the betamethasone very differently.  This added credence to  the hypothesis that not all steroids are equal, and I needed a different one.

Dr H decided, as I hoped he would, that it would be foolish to go back to a reliance on only prednisolone as it obviously wasn't working satisfactorily.  However, we also knew from the side effects that prednisolone had given me over the years that I had been absorbing at least some of it.  So Dr H started me back on 40mg prednisolone alongside an injection of 40mg IM triamcinolone every three weeks, with instructions to reduce the pred relatively quickly to 25mg.  I wasn't able to reduce it quite as quickly as Dr H had wanted me to, in part because my lungs did notice the reduction, though I did eventually get the dose down to 25mg, and then subsequently to 10mg.  Ideally he would like me to get to 5mg pred, but so many things have prevented further reduction for now.

The other reason I was unable to reduce the prednisolone down to 25mg as quickly as Dr H wanted me to was because I ruptured my Achilles tendon.  Most people get this injury through contact sports, or extreme adventures, or a vicious football tackle, or some other 'exciting' activity.  I did it by slowly walking from my living room to my bedroom.  I did nothing unusual.  I didn't trip.  I didn't fall.  I didn't stand on anything, though I did go back to the 'scene of the crime' to see if I'd trodden on something.  No, I simply stepped forward as normal and then crunch!  Sudden extreme pain, followed surprisingly quickly by relatively little pain, but I couldn't walk properly and it felt 'all wrong.'  Another trip to the GP and I came away with an 'urgent 24 hour referral' to an orthopod at the hospital.  Only this 'urgent 24 hour referral' took almost two weeks to come through.

It transpired that the betamethasone/Cushing's Syndrome has also weakened my tendons and ligaments, and the orthopod took literally two seconds to confirm the diagnosis of a spontaneously ruptured Achilles tendon.  Obviously with my lungs in the state that they are he was extremely reluctant to operate, so it is being treated conservatively - with a moon boot.  For the first two months I had a hard moon boot (like that shown in the link) to wear through the day, and a softer, lighter one to wear at night.  Since my check up in mid-October I have been able to stop wearing the night time boot, but I still have to wear the heavy, cumbersome one through the day when I'm up and about.  Only now I have a matching pair of moon boots, because the stress put on the left leg by the heavy, cumbersome moon boot on the right leg has caused the Achilles in the left leg to tear.  Thankfully it isn't a full rupture, but for the foreseeable future I have a pair of moon boots to go with my moon face and alien appearance of my torso.

This is far, far from all that has happened since I last posted, but it is enough for now.  I will return very soon with a continuation of the update, but as you have now read some of the traumas of the past few months you may be able to appreciate a little of why I have felt too overwhelmed to write about it.  Instead I have been living it and trying to muddle my way through.

Controversial

I'm the sort of person who usually thinks about big decisions a lot before 'making them public', which means that such decisions can appear to others to come out of the blue.  This happened when I set up my business, '9 Lives Craft Designs.'  I thought about it a great deal and looked into the practicalities and financial implications on my own before telling others my plans.  When I did then tell people they were somewhat surprised the next time they came around and my flat was covered in handmade cards and craft materials all over the place.

I'm thinking about something 'big' now.  Something that will greatly surprise those who know me well and have known me a long time ... I'm thinking ... Hmmm, am I ready to disclose this? ... I guess I must be in some respects as I've started writing this post ... ... ... I'm thinking of giving up vegetarianism.  There, I've said it.

I haven't yet made my final decision, and it is a major decision because I have been a lacto-ovo vegetarian (a vegetarian who drinks milk and eats eggs) for twenty years.  There were a number of reasons I decided to become vegetarian all that time ago: firstly, there were the ethics of eating meat, manufacturing animals, and slaughtering animals; and then there was the fact that I was in the midst of an eating disorder, and any reason not to eat something was helpful in maintaining that disorder 'legitimately'.  There were other reasons too, but these are probably the two that are most influential in this time of reconsideration.

I have battled with my weight for years, but during my late teens and twenties I fought with both anorexia and bulimia.  I have overcome these, but I have soared into the obese range, and I don't just mean this as a subjective thing from my perspective.  As I've said, my decision to become vegetarian was also based upon my ethics, but it was also influenced by my fear of food at the time.  Yes, I still battle with food, but I wonder if it might make a difference if I tried giving up this last restriction I imposed upon myself, although I have to say that it hasn't felt like an imposition.

As for the ethical thing, that's more difficult.  I still have big uncertainties about the meat industry, and should I decide to become omnivorous again I would avoid mass-produced meat.  Mind you, I wouldn't be able to eat most of the mass-produced stuff anyway because of allergies.  Most supermarket meat is injected with red food colouring to make it appear bloodier and therefore fresher, and some are also covered in preservatives.  Both colourings and most preservatives instigate anaphylaxis in me.

That said, health is one of the things that's been making me think about giving up vegetarianism.  My diet is so restricted because of my allergies, and although I've managed well since all the allergies were eventually diagnosed seven years ago, I depend on dairy products and eggs a great deal as sources of protein.  In recent years I have also been prone to anaemia, which is exhausting and doesn't at all help the POTS, or my health in general.  Yes, I have beans and pulses regularly, but I'm still lacking in protein and iron.

I know that some vegetarians who return to an omnivorous diet eat only fish.  Some still continue to call themselves vegetarian even though they eat fish.  I don't hold with that view - that you are vegetarian if you eat fish, because it's still a body.  I wonder what the ethics are behind only eating fish... I'm not convinced that eating fish is any different from eating any other animal, and I think that if I decide to give up vegetarianism then I will not differentiate between fish and meat.

I was in the supermarket today, and whilst I wouldn't be able to eat supermarket meat, as previously mentioned, I did make myself wander down the meat aisle.  I'm not sure how I felt.

Contemplating this change in lifestyle feels very controversial ... mainly within myself, but maybe too with those who've known me for a long time.

I haven't yet made the decision, but I know which way I'm veering.

Officially potty

I went to my appointment with the prof at the falls and syncope clinic on Friday. She'd had a chance to look at my 24 hour ECG and accompanying 'events' diary from the previous week, and she confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS). After reading the information about it on gpnotebook, where I first discovered it, I'm not surprised that POTS has been confirmed, and in fact I'd have been more surprised if the diagnosis had been something else, but I'm still not sure how I feel about it. It's good to have an answer. It's good to know the reason for what's been happening. It's good to be able to put all the pieces together. However, it's not a great diagnosis to have. POTS isn't curable, and given that I was to have something else wrong with me it would've been 'nice' if it had been something curable. At least there's hope that some of the symptoms can be treated and the prof has prescribed diltiazem to try to reduce my heart rate. She said that my heart is beating so fast at the moment that it's not working effectively, so my brain isn't getting enough blood or oxygen, which is why I'm passing out. Slowing my heart should stop the fainting. I'm hoping too that slowing my heart down to a more normal rate will mean that I might have a bit more energy again, because at the moment my body's in over-drive and I'm knacked a lot of the time. I forgot to ask how long the diltiazem would take to work, and at the moment I'm on what seems to be a relatively small dose of 120mg and my heart is still running at least around 130bpm when I'm standing. I've only taken three doses so far - Friday, Saturday and today - and I'm guessing it might take a few days or a week or so for it to kick in, but then one of my friends who's a doctor suggested that it should start to work fairly immediately so now I don't know - is the drug just not working or is it going to take a while to work?

One of the things that I was really worried about was that whatever is wrong with me was going to stop me from driving. My car is my ticket to freedom and independence, and because of my asthma it would be so life-limiting to have my driving licence revoked. This possibility wasn't something I'd initially thought of, but my mother suggested it and then at the beginning of last week she said that I may have to prepare myself for the doctor saying on Friday that I wouldn't be able to drive any more or for a period of time. It was worry about this that made me forget to ask about how long the diltiazem would take to work, and I really didn't want to ask the question about driving, but knew that I had to. Thankfully she said that I can still drive :o) I am so very, very relieved. She said that in relation to this there are a few precluding factors to driving: 1) if the dizziness I have is vertigo (it's not though - the world isn't spinning, it's the stuff inside my head that feels like it's spinning); 2) if I was fainting a lot sitting down; 3) if I didn't get any warning before fainting; or 4) if I didn't have time between warning and fainting to pull over to the side of the road. The prof said that she could see how terribly life-limiting it would be for me if I couldn't drive any more, and while of course she has to do what is right for the safety of everyone, it's a huge relief that she's said that I'm still okay to drive.

While I'm wondering how to get my head around the diagnosis of POTS it does bring together a whole variety of things for me. It seems that many of the apparently unconnected bits of me that don't work properly can probably be joined up by POTS, for instance it seems that many people with pots have a lot of common allergies, a lot of drug sensitivities and a lot of uncommon food allergies. I haven't written a great deal about my allergies here, but perhaps I'll tell you a little more about them in the near future. They're certainly complex, and I certainly have many uncommon anaphylactic food allergies as well as common allergies and allergies to meds.

Another thing that the POTS can account for is the thickening of the vitreous humour (particularly in my right eye) that has so far been accounted for by the long-term high-dose steroids I take for my asthma, even though this isn't a known side-effect of steroids. This thickening has caused the development of large black floaters in my vision that are annoying and sometimes get in the way when I'm reading. They're also a reported symptom in POTS.

Postural Orthostatic Tachycardia Syndrome is a neurological condition - a dysfunction of the autonomic nervous system (that's the part of the nervous system that controls the body's automatic functions). The digestive system is controlled by the autonomic nervous system, and the prof told me that the POTS is most likely accountable for the Irritable Bowel Syndrome that I've had for several years, and it may also explain some of the upper right abdo pain I get, although this has previously been put down to cholecystitis and ulcers caused by the prednisolone and theophylline that I take for my asthma. It could, I suppose, be a combination of all three things. Another thing that the autonomic nervous system controls is sweating, and for a long while there have been times when I've had excessive sweating. This is embarrassing and makes me very self-conscious when it happens, but apparently this too can be attributed to the POTS.

There are various other 'little' things that the POTS diagnosis pulls together (including the non-asthmatic chest-tightness I've been getting, and maybe even weight gain), and suddenly it all makes sense. How I come to have it though is perhaps something we'll never truly know the answer to. It seems there are various causes of POTS, including viral and bacterial infection (pneumonia is particularly mentioned) and Lyme Disease, which I had back in 1997 when on holiday in Canada (and I actually haven't been off the steroids for my asthma since a month or two after this). There's also the possibility that it could, in my case, be caused by some of my asthma medication, so there's uncertainty around whether my POTS is primary or secondary, and I'll probably never know for sure, but that doesn't really matter because it doesn't change what's happening or the effect of it on me. The only thing the cause of it could effect is the prognosis. While it's not curable, about 50% of people who develop it after a viral infection get some relief after two to five years, while others who develop it for some other reasons have a very poor prognosis with distinct possibility of deterioration over time. I guess I have not to get too hung up about this aspect of things though and just get on with it. The important thing now is to work out how to live alongside this new companion.

There's certainly no denying that I am now officially potty.

Getting back on track

Now that I've had a few weeks out of hospital, and now that I've finished my course and all the work for it, I'm finally beginning to get my strength back. For the weeks I had the pneumonia and for a couple of weeks after getting home from hospital I was having to use my electric wheelchair most of the time, but now I'm up and about and having to build up my muscles again. This is great, although it's also hard work. I'm determined though and I'm slowly building up my muscles and strength, and I've just started back to a more structured fitness programme. Okay, so I'm a bit limited at the moment in what I can actually do, because it's been a fair while since my muscles were actually used properly, but I'm getting there. I started out on Saturday with a walk along Longsands beach at Tynemouth. I took it slowly, but had a nice time wandering, watching all the dogs that were around playing and chasing each other, getting sand in my shoes, and enjoying the sunshine :o) Sunday was another lovely day so this time I went to St. Mary's Lighthouse for a walk along the cliff tops. The tide was in so the island causeway was covered, but I quite liked that because it's not something I often see - usually finding myself there when the tide's out. I met a friendly chap taking photos of seagulls while I was up on the cliffs, and we spent quite a while chatting about photography and snippets of life before ambling back towards the car park together, where we parted. It was lovely.

So yesterday (Tuesday) I made it back to the gym/physio for the first time since before the pneumonia. I didn't do even half of what I had been doing before I went into hospital, but I worked hard nonetheless, and have felt it today, though not too painfully. I thought about going back to the gym today, but decided that I was a bit too tired to do anything effective and not wear myself out completely, so instead I decided to try walking into town and go to the gym again tomorrow. I have to say that I was quite tired by the time I got into town this afternoon, but it felt good to have made it, and also quite a surprise. I know it's not really that far (a couple of miles), but considering how sedate I've had to be for the past few months it was a real achievement. Having survived the trek into town I was determined not to waste the trip and only come home with the small packet of yeast I picked up from Waitrose, and the funky door key I had cut for my new front door, so I went to Waterstones and ended up buying/ordering the books for my next course. I'd vowed that I wasn't going to do this yet; that I was going to give myself a break, but I couldn't resist ... books are just too addictive. I've put them on a high shelf where I know I won't forget about them, but they're not in immediate reach so I can make sure that I read some things that are completley unstudy related. I have a huge pile of books I've been wanting to read for ages, so it shouldn't be hard to make myself read something unstudy related ... for a while at least.

Tomorrow I will go back to the gym, and back to building my strength and stamina. I still have the plan to do the gym marathon in October, but I'm also still waiting to hear back from the ward Charge Nurse about the ward's fund. I tried asking him about it when I was in hospital, but he was very busy and never had the time to get back to me about it. I'll try emailing him again ... and perhaps write to the ward Sister as well, who's perhaps a bit more organised than J ;oP However, when I have details about the fund I'll get back to you with a way to sponsor me (if you'd like to), but in the meantime I need to get back to getting fit enough to do the gym marathon by the end of October.

Getting back to getting fit is also helping me to focus again on getting back to losing weight. I've been trying to while I've been ill, and had some success, but it's been minimal, which I think is partly down to my infection-induced inactivity and increasing asthma symptoms, though of course also down to the usual thing of just not cutting down enough on what I'm eating. I'll get there, and now I'm getting back on track :o)

Well, one of the benefits of doing more is that I sleep better, and last night I slept very deeply :o) After this afternoon's walk into town I think I might sleep okay tonight too, and now is the time to see if I'm right. Night all :o)

Looser and tighter

Do you have a pair of emergency trousers? Mine are a cheep pair of jeans from Tesco that I quite like, but which hardly ever see the outside world because they're that little bit too tight. They're the ones that come out when all my other clothes are in the wash, but I have to wear something. My emergency trousers had an outing from the drawer the other day and to my surprise and delight they're now a little bit looser than they were :o) They're not quite at the point where I'd feel comfortable wearing them in public, but maybe one of these days they will be. Hurray to weight loss. Okay, so I've only lost 9lbs so far, but that's not bad going really, and I'm pleased :o)

So I have looser emergency trousers, but unfortunately I have tighter lungs today :o( They were a little tighter than usual all through the night and kept waking me up, and today they feel rather irritated and gumbly. To be honest, they feel a little pre-infectiony, but I'm hoping with all hope that they're not and I'm taking things very easy today. After finishing and sending off my assignment yesterday (hurrah! Though that's also why I've neglected you for a bit), this afternoon I've actually had some guilt-free time lying on the sofa reading. It's been lovely. Coughing and wheezing has been a bit of an interruption to the relaxation though, as has the general feeling of not being 100% well. I have to be okay though, because next weekend is my nephews' baptisms and I'm going to be god mother to Daniel :oD I'm sure I'll be fine, it's just ... well, there's always the uncertainty with me and I have to be careful at the first sign of infection. Of course I'll keep an eye on things and go to the doctor for antibiotics if I need them, but at the moment there's nothing much I can do except have extra nebs as I need them. My prednisolone is already at 50mg (I haven't managed to get it down at all since I was in hospital three weeks ago), so there's not a lot of room for manoeuvre there, although I could bump it up to 60mg if I really have to ... We'll see. I'll keep it at 50mg for now and watch carefully how things go.

Out of my mind?

I may have just lost the plot and be completely out of my mind (quite possible as, for some reason, I didn't get any sleep last night), but I've come up with another hair-brained idea. It may prove to be beyond me and my physical capabilities but ... I'm thinking of training to do a gym marathon. This is basically doing the distance of a marathon but in the gym, which in my case is with the phsyio in supervised exercise. I'd do it in part for my general fitness and well-being (or well-boing, as I just typo-ed ;oP although I'm guessing there won't be much boing in me by the end of it), and as part of my weight-loss plan, but I'd also do it as a sponsored event to raise money for Ward 29 at Freeman Hospital - my second home. Having come up with the idea and deciding, in my sleep-deprived state, that it's a good one (I may change my mind about this, but I appear to be committing myself to it all the same), I then thought that perhaps I ought to set a date for myself. Now I need to make sure I have plenty of time to get fit enough for it, and there will of course be the variable of my health around the time, but as it could prove to be a complete nightmare I thought it might be apt to do it on or around 31st October. The only drawback is that this is a Saturday and the gym is usually very busy on a Saturday, so it could be postponed to 2nd November, or brought forward to 30th October. As I say, there'll have to be a certain amount of flexibility anyway to allow for breathing ability and my hospital status, but at the moment this is the plan. This morning I voiced the idea on the online weight-loss support group thingumy that I joined the other week and I've already had people saying that they'll sponsor me! This is fantastic, except that I don't know how to set up an online sponsorship site/wotsit so I'm going to have to do some investigating and over-coming of computer numptiness :o/

Oh my word, what am I doing?! Some days I can't even walk, so why on earth am I setting myself this ridiculous target?! Answers on a postcard, or leave a comment seeing as you don't have my address ;o) I will just have to keep telling myself that this is going to be good for me and will also benefit many other people if it raising money for Freeman Hospital's Ward 29. After all, they do have a habit of saving my life ... just so long as they don't have to do so as a result of this craziness ...

Okay, now I've told you about it I guess I'm committed. Eeek!

P.S. If anyone knows how to set up online sponsorship, do let me know. I've looked on Justgiving.co.uk but the ward isn't registered with them even though I know they have their own charity name - SWaRM (Specialist Ward for Respiratory Medicine), which I know because the Charge Nurse asked me to come up with a name for it a few years back.

Yes, I know.

I have struggled one way or another with my weight since my mid-teens. To be honest, to begin with it was my mother who had more of a problem than I did, and looking back I see that I wasn't over-weight, it's just that my frame is bigger than my mothers. I was actually very fit - swimming everyday and spending most of Saturday trampolining - so what extra weight I did carry was muscle. All the same, my mother made me aware of my body and I think compounded insecurities about it that were already there.

When I was sixteen/seventeen the depression I'd had since I was a child (not officially diagnosed for many years) deepened for various reasons when I was sixteen/seventeen, and unable to express my distress (again for a myriad of reasons) I turned it back onto myself and it came out in the form of anorexia. This stayed with me for a number of years, but gradually developed into bulimia, which stayed with me for an awful lot longer ... until my late twenties. I am through all that, but now I am very over-weight and it bothers me. I know that I have to be careful not to get sucked into bulimia again, which is all too easy to do, but I do need to lose weight. I am self-conscious. I am embarrassed. I am ashamed. Okay, so I know that those who care about me probably don't care what I weigh (and I'm not about to tell you my weight!) or what my body-shape is, but I do, and the fact of the matter is that being over-weight won't be helping my asthma or my general health.

A few years ago I lost a lot of weight without resorting to eating disorder 'habits', and I managed to keep it off for about three or four years, but over the past couple of years I've put it all back on again ... plus a little. It's upsetting. When I lost all that weight the nursing staff on my usual ward at the Freeman Hospital were so congratulatory and pleased for me, and that felt good too. Now here's a really stupid think that could well make you want to shout at me, and is actually a huge thing for me to admit 'out loud' ... a contributory factor in recent months' reluctance to go into hospital with my asthma is embarrassment and shame at having put back on all that weight. Yes, I know it's stupid, and yes, I know it's dangerous, and yes, I will (and have) ignored it when I've really needed to go in, but it's something that hangs over me.

It's time to do something about this. I mean, seriously get to work on this, and without falling into the trap of eating disorders, which is easier said than done as, in my opinion, these are things that are managed, not cured. In the past year I've tried losing weight on my own, but obviously unsuccessfully as I've actually put weight on, so I've thought about joining something like Weightwatchers or Slimming World, but I feel intimidated. I'm also not sure if these organisations would be able to work around my allergies as so much of their focus, as far as I'm aware, is around using their own-brand products. No, I need something that is a group approach, but that also gives me independence and a degree of privacy in it too, although I know that sounds ironic given that I'm writing about it here. So what's the answer? I didn't have a clue, but then I hit on the idea that there might be some computer software that could maybe give me the focus and even some kind of motivation/encouragement. Not ideal, but I decided to do a web search for something suitable. There doesn't seem to be much of this kind of thing out there, let alone anything with many positive reviews. However I did come across a couple of online support group things with goal-setting, progress tracking, and vibrant communities. I checked one or two of them out and have signed up with SparkPeople yesterday morning. It's free, which is a huge bonus, and seems really motivational, and I've already had some posts of welcome and encouragement. At the moment I'm very limited in what I can in terms of activity to help the weight loss process, which is one of the focuses of SparkPeople, but perhaps when I'm through this current period of inability to breathe sufficiently well I'll be able to get back to supervised exercise. I want to do so now, but there is absolutely no way that it's possible since I can hardly move around the flat without getting breathless, so for now I'm having to focus solely on food intake. This poses it's own difficulties as I know that if I start the whole calorie counting thing then I risk being drawn back into disordered eating, so I'm avoiding that and instead concentrating on general healthy eating (I know all the theory, of course, I'm just not always very good at putting it into practice) and portion size.

It's tough. All of it, not just the quest to lose weight, but all the shame and embarrassment at being over-weight to begin with. The stupid thing about it contributing to reluctance to go to hospital with my asthma (though I'm not quite at that stage yet with this current bought). It's all hard. I need to change it though, and I know that I'm the only person who can do anything about it, so here I am at the beginning of a new task. Wish me luck, strength and perseverance, because I'm going to need it.