Well, I finally got to see the consultant at the MacMillan Centre, and as a result of this I now have a fairly open-ended prescription for morphine to control the pain I suffer. I seem to need something like 300 milligrams a day, which is rather a lot but not unexpected for someone in a state of terminal illness, as the consultant reminded me. The morphine has made a tremendous difference to my quality of life -- instead of spending most of my time in bed because I'm in too much pain to do anything else, I'm now "up and about" most days, and can wander around the house and studio with the aid of my stick and handrails. I still need the wheelchair for any distance over a dozen metres or so, of course: no amount of pain control will give me back the proper function of my muscles that I lost to anorexia. But I can do so much more for myself now... drive the car, even.
Heather says I've been like a different person in the three weeks since I got the morphine, my emotional state has improved so much now I'm not in constant pain any longer. I'm getting to do things I enjoy with Heather and my friends, and I know that even if I overdo things a bit and come back exhausted and aching, I can take another shot of morphine, sleep and recover, rather than lying awake in pain all night. Having me this much improved is, I'm sure, benefiting Heather too -- she has fairly major health problems of her own, and the less dependent I am on her, the better.
The only clouds on the horizon recently have been a couple more nasty infections (I'm still taking Cipro today for one of them) and one more vertebral fracture courtesy of my old "friend" Osteoporosis. I'm due to have a series of spinal X-rays done shortly to see if there's any hope of shoring up some of the damage -- there's a promising new technique coming in that involves packing crushed vertebrae with a kind of cement to stop them collapsing any further, though whether my general health would allow such a process is another question altogether, unfortunately.
Since my emotional state is good at present, I've been coping well with nutrition, and have gained back a few pounds since the rapid weight crash last summer. While I feel distressed about this as usual, I'm trying to hold on to the knowledge that it's helping to keep me alive and well enough to have a little bit of a life. I know I could lose that weight again so easily, and I must fight to keep it on. I know that if I lose it again I'll probably lose the little bit of mental clarity that I've got at the moment and the ability to do a little bit of non-strenuous pottery.
Finally, since my depression has been under good control lately, I've discharged myself from the care of the psychiatric services. My anorexia has been "off limits" to them for a couple of years already, and I no longer feel I need a psych to monitor my depression -- my GP can give me my regular scripts for Prozac.
I have settled down in my "new, improved" life with morphine to control my pain, and am learning what I can and can't do. You see, the painkillers enable me to do a lot more than I used to for a short period, but they mask the worsening of the underlying conditions that any kind of physical activity causes. So if I have a relatively active day, maybe doing a bit of pottery, I am likely to be exhausted and/or in pain the next day. I've found it's dangerously easy to "overdo it" to the extent of requiring a whole week in bed to recover, so I have been trying to learn to pace myself properly. It's very hard to judge "how much is too much", though, and it seems unpredictable in fact. What I can accomplish without problems one day might knock me out flat another day.
This isn't as bad as it could be, and instead of moping about what I can't do, I enjoy the things that I can do, thanks to better pain control. And when I'm confined to bed, at least I can sleep and recuperate, rather than lying awake with intolerable pain. I'm now taking an average of half a gram of morphine a day, which is an enormous amount, but that seems to be what I need to keep the pain under reasonable control.
I've had a few more opportunistic infections. Nothing novel there, as I get them frequently, though they have caused me to be more run-down and tired than I would otherwise be. I think they have also had an adverse effect on my weight, along with my increased level of physical activity --- I'm not restricting my feed, and in fact am actively trying to have as much as I can without being sick, but my weight has dropped substantially in the last two months. I often suffer a relapse of anorexia starting about this time of year, which worries me: if this summer's anorexic epsiode happens on top of this inadvertent weight loss, and takes my weight down by the usual amount, I will reach a new lowest-ever weight, with all the problems and risk of death that that implies. I really don't want that to happen, as I have been happier recently than I have for a long time before and I should have everything to live for. I guess I need to be hyper-alert to the "anorexia monster" and fight it before it gets me into my usual annual relapse.
I had another meeting with the rheumatologist about my arthritis, fibromyalgia and osteoporosis. The last treatment with the intravenous bisphosphonate that I had, caused me a severe allergic reaction, and the consultant confirmed that in view of that, it wasn't safe to continue treatment. This means I'm stuck without anything to slow the spread of osteoporosis, over and above the basic HRT and Calcium --- and even this is ineffective in malnourished patients. The result is that my osteoporosis is getting worse and worse, and the rheumatologist has serious worries about me getting a major fracture. He feels that my body is too weak to cope with anything on the magnitude of a hip fracture, and that an event like that would probably kill me. He was emphatic, to my GP and to Heather as well as to me, that I must be protected from falls at all costs, even if this further limits my mobility and quality of life. He is particularly concerned because my heart condition results in fairly frequent fainting if I stand up, and I've hit the floor several times in the last year. Most times, I can sense the start of a fainting attack and steady myself as I go down, but not always. Last time I cracked a rib. I just hope I don't break anything bigger.
Then, in April, I had an unexpected occurrence. Although I have a long history of allergies and asthma, they are usually well-controlled with medication and seldom affect my life to any great extent compared to the anorexia. This time, for unknown reasons, a simple exposure to house dust while going through some old paperwork caused a full-scale anaphylactic event, making me turn first bright red and covered in a rash, followed by breathing difficulties and loss of blood pressure, so that I collapsed. Fortunately we have the right medications in the house to control such events, and Heather dosed me up with the right stuff before calling out the emergency doctor. I didn't want to go into hospital, feeling that Heather can do a better job of monitoring me at home that the hugely overworked local ER could, but I spent a whole week in bed after that event before I was well enough to resume my normal life.
Now, here's an unusual (but known) side-effect of severe anorexia... deafness! My hearing has been impaired since childhood, due to a middle ear infection. Because I was very starved at the time, and also because antibiotics 30 years ago weren't as good as they are now, the infection did a fair bit of lasting damage, so I gradually learned to lip-read enough to compensate for my poor hearing. In recent years, I have noticed a much greater hearing loss. I find it hard to hear what people say unless they raise their voices, and the phone is a nightmare. Knowing that anorexics do sometimes suffer deafness, either due to neurological or auditory damage, I finally got around to having my hearing tested. The result showed a dramatic hearing loss (55 decibels) and also showed that the majority of the damage was due to loss of sound transmission due to destruction of the tiny bones of the middle ear, thanks to my old friend anorexia. The result is that I've had to pay out for a rather expensive hearing aid (the basic NHS ones are not enough to correct the loss I have), but it really does make a dramatic difference to my hearing. It never ceases to amaze me just how many bodily systems can be (and in my case, have been) damaged by anorexia.
I wish there was something that could restore the damage to my sight that the anorexia has caused, but unlike the hearing problems, there isn't a 'fix' available. Spectacles can only provide a rough correction for focal length and astigmatism, and can do nothing for retina or nerve damage. Nor can they correct for the distortion of the eyeball that occurs when the body loses the fat pads that normally support the eyes in their sockets. So I'm stuck with an inability to see fine detail at any scale.
Still, despite all the problems I'm still in one piece and still having enough quality of life to make living worthwhile.
I haven't written much for a long time, to the extent that many of my regular readers have emailed or even telephoned to ask if I'm OK... so I guess it must be time for another update.
As I anticipated in the last update, I did lose more weight over the summer, despite trying my hardest to keep the synthetic feed going in and moderate the weight loss. The result was that I did indeed reach my lowest adult weight, and it had a fairly big impact upon my health -- though not as bad as it could have been. My weight has now come back up by just two pounds (I usually do a little better in the Autumn than in summer) and I seem to be holding steady, more or less, though at a very emaciated weight, even for me.
Thus far (touch wood!) nothing really deadly has happened to my health, just the usual collection of fainting, another vertebral fracture, hypoglycemic attacks, heart arrhythmia and neurological problems. I've been very run-down and have had to spend a lot of time in bed, but the morphine continues to give me adequate pain-control so that I can enjoy what time I can spend 'up and about'. My doctor has expressed considerable bafflement that I'm still functioning as well as I am (and he doesn't even realise how much weight I've lost), but he accepts that I'm an unusual case, having been anorexic since childhood, and has long ago abandoned any idea of pressuring me to go back into hospital or a hospice. This is a big improvement -- my new GP, who has now been looking after me for a whole year, is a lot more understanding of my situation than were his predecessors... two years ago they were pressuring me to go into the terminal care hospice; three years ago they were after me with the Mental Health Act to have me 'sectioned' (committed).
On the minus side, I have seemingly lost the ability to do any pottery. The last dregs of my physical strength seem to have disappeared along with the weight I lost over the summer. This means I'm having to keep occupied with entirely sedentary hobbies, and leave the pottery to Heather. This has caused me a certain amount of depression, as pottery was a much-loved hobby. I've tried to improve my intake of feed, in the hope of getting a little strength back, but having gained two pounds I just can't emotionally cope with gaining any more weight, so I guess I'm scuppered. Damn this anorexia! Once I've reached a certain weight, anything higher becomes 'unsafe' and I'm terrified of gaining it back. And despite all the progress I've made emotionally over the last few years (it's a lot -- my self-esteem is better, my confidence is massively improved, I no longer self-injure or hate myself) I still can't make any headway at all on the anorexia. Although my broken digestive system obviously prohibits a return to normal eating or normal weight, I ought to be able to physically cope with more feed and a slightly higher weight, maybe enough to do pottery again. But the grip of the anorexia is too strong.
More positively, the photo-journalism project I've been involved with has made good progress. The photographer running it, Felicia Webb, has gained several prestigious international awards for this work, which includes numerous pictures of me. The pictures have already been used in magazines all round the world, and eventually there will be a book, a website and a travelling exhibition too. I have to admit that I had a few reservations at the outset, worrying that the pictures could be used to sensationalise anorexia, but I feel that Felicia has handled the project very well, and I'm happy with all the pictures, even the ones in which I'm taking a bath or standing semi-naked on the scales.
Since I've now become a lot more comfortable with people knowing what I look like, I'm planning to add a personal photo gallery to these pages. Again, not with a view to sensationalising the condition, but to show people how anorexia affects my life. These pictures have been taken by Heather... so watch this space as more will be added soon!
Perhaps connected with this, or perhaps due to my inproved self-esteem, I made a conscious decision a few months ago, that I wouldn't hide my body away as though I was ashamed of it any longer -- even if I do sometimes feel ashamed of my emaciated and sickly appearance. So I decided that, in particular, I'd wear whatever clothes I like, rather than dressing to hide my body away as I have done for years. Heather took me into the city and bought me several new outfits for the summer, which I altered to fit me, and I've been dressing to please myself and to enjoy the summer weather. This change in attitude seems to have made me happier and further improved my self-esteem. I still get sarcastic comments from narrow-minded people, in fact I get more of them now, but I no longer let it bother me. All my friends welcome this change in me, and I think it's also given a bit of encouragement to some of my many anorexic friends.
Another small piece of good news among the doom and gloom... I've been trying to 'exercise' my brain, in the hope of tapping into Nature's ability to work around neurological damage and restore some function, and have had some small success. Bear in mind that I've suffered serious frontal-lobe lesions as well as widespread demyelinisation, and this has seriously trashed my memory and cognition, and has even affected my ability to speak, to some extent. I have gradually eased myself back into doing some computer and electronics work, and have found that my clarity of thought has improved markedly for being 'exercised' in this way. My ability to form new memories is still very impaired, and I'd be lost without my computers and countless notepads and reminder slips, but I've been able to do a few things that I'd lost hope of ever doing again, like programming a microprocessor. I'm certainly not back to the standard I was at when I was working as a medical engineer, but I have far fewer episodes where I just can't 'think straight'. I think my memory is a little better than it used to be, too, though it still causes major problems. I still have the myoclonic attacks (muscle twitches and jerks) as a result of brain/nerve damage, and my speech hasn't improved (in fact it's deteriorated recently), so I guess that those represent damage that can't be 'worked around'. My biggest fear remains the threat of personality change, often seen in people with frontal-lobe damage, though my friends have not reported any problems as yet. Being trained in psychology, I am painfully aware of what frontal-lobe damage can do, and have asked Heather and my friends to be on the lookout for any signs.
Finally, although both Heather and I have been suffering ongoing health problems, we have both been much more happy and stable emotionally this year than for a long time previously. We've both made big efforts to learn to accept the things we can't change, and to enjoy the things that we have changed for the better, and this is reflected in our relationship -- despite all the problems, we're both happier with our lives now than we have been for years.
As is usual in the autumn/winter period, I have tried my best to force myself to have more nutrition so that I could fight off the inevitable winter infections that come along. After dropping to such a low weight in the summer, I just couldn't manage to get back to my usual "winter weight", and only managed to gain a couple of pounds, so I'm quite a lot lower than I was last winter. Probably as a result of that, I have suffered a whole succession of winter illnesses that have kept me confined to bed for six weeks and have left me feeling very tired and run-down. As well as the usual colds and sinusitis I've had Norwalk virus and flu, despite having had the flu vaccination. The reason being that vaccines depend upon the patient's immune system in order to work, and mine is not in a good state. Still, if I hadn't had the vaccination I'm sure the flu would have been much worse and perhaps fatal.
Although my physical health has been poor, my emotional health has continued to be good. I managed to avoid getting too depressed about being unwell, and when I haven't been stuck in bed I've continued to pursue my hobbies, mostly electronics and computing because I'm too weak to do pottery. I really feel that continuing to challenge my brain with things like that is beneficial, also it's an interest that Heather shares with me, giving us more activities we can do together. This is important because I've lost the ability to do so much over the last few years, and many of the activities that Heather and I used to share have fallen by the wayside.
It was reported this month that the British government is in the process of changing the law to recognise same-sex relationships on a similar basis to marriage, and as of this week, same-sex commitment ceremonies recognised by the state are available in our area. Once a relationship is registered, the partners will gain legal rights as soon as the enabling legislation is passed. Needless to say, Heather and I are very happy about this and are planning to hold a ceremony at the local Register Office as soon as we can arrange it. Although we have been handfasted (married) in the eyes of our faith for nearly six years, it will be good to have official recognition at last, and it will also be a good way to reaffirm our commitment to each other after all the trauma of the last few years.
The only apparent cloud on the horizon at the moment is that I'm struggling badly with keeping to my present weight, and finding it tremendously stressful being even fractionally heavier than I was last summer. Although I always seem to relapse in spring/summer, it seems to be starting earlier than usual this year. This is rather worrying, since the last time I started to slide this early in the year was in 1998, which of course led to my worst-ever anorexic crisis and did a great deal of damage to me. I simply cannot afford to risk another crash like that because I wouldn't survive it. I've searched and searched for any possible reason for why I'm struggling, but can find none -- my life is about as happy now as it's ever been. I can only think that it's simple force of habit, or addiction to starvation, call it what you will. I just don't feel "normal" unless I'm restricting my intake drastically, and since my digestive system cannot physically tolerate more than a few hundred calories a day of feed anyway, any kind of restriction is quite dangerous. I don't want to die, I don't want my health to deteriorate even further, but it's just so hard to force myself to take in enough synthetic feed. I've promised Heather that I'll try hard not to let myself go lower than I was last summer, but I can't be sure I can do it.
I still don't seem to have escaped the winter health problems -- I've had several more infections, munched my way through ever more antibiotics, and spent more time in bed. To make things worse, my teeth seem to be deteriorating faster than ever now. I've had another wisdom tooth out (without anesthetic, of course), and the final one is due next week. I've also had a bunch of root-canal work and three of my front teeth have broken open in the last few weeks due to calcium depletion; I'll have to have them capped pretty soon as they're crumbling fast. I haven't had them done yet because not only is my mouth still horribly sore after the last wisdom tooth, but also I've had a series of really nasty infected lesions due to a weak immune system. Still, teeth can be fixed, and warmer weather is on its way, so I'm hopeful that my health will improve a little soon.
I've had a number of medical reviews ranging from brain function to osteoporosis. My brain function is looking pretty good, it really does seem that the "exercise" I've been giving my brain recently has paid off. My memory is only slightly improved (my collection of notepads is still a standing joke) but my general cognition is much improved. So far there is no sign of the potential nasties (like personality change and impulsiveness) that are often seen in frontal-lobe-damaged patients, so I may be in for a lucky escape there.
My general physical health is generating much more concern. One of the consultants has stated yet again that I could suffer a major fracture from the slightest fall or impact, and that he expects that to be a likely cause of death as I haven't the bodily resources to repair a major fracture -- so I am to be protected against knocks and falls at all costs. This makes both me and Heather more nervous about going around the city, as it would be very easy for someone not looking where they're going to collide with my wheelchair. But I know that we're not over-reacting (and nor is the consultant) from the sheer ease with which I suffer minor fractures from any tiny knock or bump. I've actually lost count of the number of fractures I've had in the last two years, but (touch wood!) they've been smaller things so far that I've recovered from -- the worst ones being a rib and a couple of vertebrae.
My emotional health continues to be good. I've been fairly free of "winter blues" this year and have kept myself busy whenever I've been well enough. I'm even coping well with the latest difficulty: the Social Services department have been trying to cut my disability benefit payment to a lower level as part of a general cost-cutting campaign. Heather and I were most offended at this -- we don't exactly get a lot of money anyway from the system. My doctor and other health workers are all equally appalled at what the DSS is trying to do and have all submitted reports in my favour, so we're taking the DSS to tribunal to have their decision overturned. We have every single medical witness on our side and only the pen-pushers of the DSS against, so I think we're pretty certain to win, but it's a lot of unnecessary trouble for us. A few years ago when I was in a less-good mental state I'd never have been able to cope with a conflict like that, and I fear for the other disabled people who can't. I've heard from some of my health workers that the DSS is doing this to a lot of people, including others who are terminally ill, some in a worse state even than I am. I think that's shocking -- it's very hard to get disability benefits in the UK already, without them trying to reduce them for people who have been ill for years.
My weight is still heading downwards. There is always an annual cycle in my weight, for some reason I always seem to relapse in spring and summer and then recover slightly in autumn and winter -- usually I'm at my healthiest weight in February or March and drop rapidly from about April. This year I'm not at a healthy weight at all: for this time of year, I haven't been this thin since my teens, and if the usual springtime fall in my weight comes along I'll reach a new lowest adult weight in the summer. While I have to admit that there's an incorrigibly anorexic part of me that rather likes the idea, my more logical mind (and my loved ones) worry about this. In recent years I've had a trend of ever-lower low points in summer, and last year, although I didn't have any major health disasters, I was utterly exhausted and run-down all summer. Sooner or later I must be likely to have another major health crash like I did in 1998, but I don't want to think about it. Maybe I'll get away with it for another year... or two... or three...?
Finally, I seem to have become involved in another flurry of media work, including TV and magazine appearances. Look out for a future appearance involving my opinions on "pro-ana" websites and how they mislead and harm vulnerable people by claiming that anorexia is glamorous... during filming, I actually collapsed with heart problems and hypothermia on one occasion (I got rather cold, filming outdoors in March!). The film crew kept the cameras rolling while Heather frantically checked my vital signs and warmed me up, and I gradually regained consciousness. "So you think THIS is glamorous?", I asked my invisible pro-ana audience, with heartfelt feeling.
A lot has happened since the last entry, so I'm overdue for an update. Overall I've had a pretty good few months, although just in the last couple of weeks my anorexia has suddenly returned in full spate -- which I'll talk about later. Heather and I have just celebrated the 6th anniversary of our handfasting (Wiccan marriage) and we're happy to report that our relationship continues to heal from all the damage it suffered during the worst times of my illness. Although things are hard, far harder even than we foresaw when we got together, our love for each other is undiminished and we're determined to carry on and make the most of life.
My health has not been too bad since the last update apart from some dental problems. I had the last wisdom tooth removed -- for the first time it came out without complications, or so I thought at first. Then I found that I had what is called a "dry socket", where the hole the tooth was in fails to heal up. Several attempts at treating this failed, and I ended up with a hole going right down to the bone, and thoroughly infected. This was excruciatingly painful and took two months (and a pile of antibiotics) to heal properly. I still have a deep depression inside my mouth where the infection ate away at the bone. At least the process of capping my broken front teeth went without problems, so I look all right!
My intellectual interests are still going strong, giving me further confidence that I've had a very lucky escape in terms of brain damage -- I really do seem to have got back, I'd guess, maybe 80 percent of my mental capacity, maybe even a bit more. My memory is still shot, I guess I'm stuck with that, but I can work around that. I've been doing a lot of computing/electronics projects, some of which are described on the main Dawnmist website, and also continuing with the voluntary counselling work I've done for years. I've even started getting referrals from within the NHS system now, which is a real turnaround -- they seem to have finally accepted that I can help other sufferers despite not being recovered myself, and by referring patients to me they are also tacitly acknowledging that there is insufficient specialist provision for eating disorders in our area -- something I have been arguing for years.
With the help of my adopted sister, who acts as my counsellor, I have come to recognise why I tend to suffer a relapse every summer, which gave me added strength to fight against the usual relapse and maintain my weight. As a result of that, I managed to reverse the weight loss I suffered in the spring, and have been at my highest "summer" weight for some years, probably almost ten pounds heavier than I was last summer. This was all fine and well for a while, and in fact I was even able to start doing pottery again as I gained a bit of strength back, until just recently. For some reason I have suddenly become emotionally incapable of coping with being at this weight and have been in full-on relapse for about a fortnight. However much I try to rationalize, argue with myself and do the cognitive-analytical thing on why I relapse in summer, I can't stop this one. The one point in my favour is that I have managed to force myself to have just a little nutrition rather than doing an outright starve, which is what usually happens when I get triggered. I know from past experience that at this level of nutrition I won't be at deadly risk for a while, so I have a "period of grace" to get my head sorted out. I'm hoping too that once I get back to last summer's weight I might start to feel semi-comfortable in myself again and might be able to take in a bit more nutrition, rather than just free-falling until something really serious happens.
I feel bad about relapsing. I feel I'm letting down Heather and everyone who has tried to help me, and that just reinforces the guilt feelings that contribute to anorexia. I just keep promising that I won't go completely out of control this time and hoping my loved ones can accept me, faults and all. I don't entirely understand why I've relapsed now, but certainly part of it is simply that I am unfamiliar with being at this weight in summer (it's rare enough in winter that I am doing that well!) and it's pushed me beyond my point of tolerance. Another possible contributor is that I've been in the eye of the media a great deal lately. They always portray me as an insanely underweight end-stage anorexic who only stays alive by the skin of her teeth (which I suppose is true), but that seems to make me feel guilty about being anywhere above my lowest weight. It's almost as though I subconsciously need to "look the part", and my distorted perception tells me I don't look the part already. I was very surprised when the BBC showed a short film about me prefixed with a warning that "this film contains scenes that may distress some viewers" -- referring to pictures of me, undressed. I suppose it ought to have been a reality check that even at a weight well above where I've sometimes been, people find my appearance "distressing" but somehow it didn't really register. I just felt fat looking at myself.
As I said I've been in the media a lot recently. I've done another two TV and two newspaper appearances, with more to come. I appeared in a documentary about pro-anorexia websites, in which I gave my opinion in no uncertain terms as to how bad they are. The TV company trimmed about 9 hours of interview and background material down to just a few minutes and I think they lost a lot of the strength of my argument, which was a pity. But they did focus on how much damage anorexia has done to me as a counterpoint to the assertions of many of these websites that it is somehow "OK" to be anorexic and it won't cause (much) harm. This was the report in which I collapsed with heart trouble, and they did indeed show that footage, which I think would have had a strong effect on people.
My appeal against the Social Security people is due later this week, so I'll report back on that as soon as I know the outcome. I have had a lot of popular and media support in my campaign to get my payments raised back to their original level and I'm cautiously optimistic about the outcome of the appeal.
Well, we won at the tribunal. I was never seriously in doubt that we would, for the simple reason that all three medical reports stated that I should be returned to the full level of benefit. Not that I'd totally put it past the UK authorities to "nobble" the tribunal -- it's another government agency, and somehow I don't totally trust one government agency to be impartial when someone is in dispute with another government agency! Still, cynicism aside, it did all go well.
I've had another slew of infections, which fortunately responded to antibiotics. It's very frustrating to continually suffer infections like that despite doing the best I can to support my immune system with medications. It didn't get much better even when I was at a significantly higher weight and in a better-nourished state (such as when I was tube-feeding), so it looks like I'm stuck with it.
I'm still in an anorexic relapse. I've managed to force myself to have half my usual intake rather than nothing, but even that has been a real struggle, based on telling myself that I mustn't let Heather down. As expected, my weight has dropped substantially -- I'm now only 2 lbs heavier than I was at my low point last summer, and expect to overtake that value within a fortnight. I'm just hoping that because I'm restricting rather than starving outright this time, I won't cause the kind of serious damage that I suffered in 1998. Even though the scales tell me my weight is very low, I look in the mirror and see myself as fat -- just as fat as I was at 8 lbs heavier. What is going on? Will I always feel fat or will I reach the hoped-for point of comfort where I'm able to ease back a bit on the restricting? In the past I have tended to reach a point of near-comfort with my weight, but that doesn't seem to be happening now. Perhaps my comfort point has shifted downwards? I just hope I still have a comfort point -- I can't restrict for ever if I want to survive, but I can't cope with being this heavy.
One other thing that is worthy of some concern, health-wise: for the last several months, I've increasingly been struggling to keep up my intake of calcium (I get this on prescription, in soluble form). The calcium solution has been making me increasingly nauseous, all the more so since I started to relapse. I know I need to try hard with the calcium, as that and HRT are all that I have to try to slow down the progress of osteoporosis, but I'm not doing well. Even on the full dose of calcium, my bones were getting steadily worse, so I dread to think what they are like now. Unfortunately the health authority will not pay for me to have a repeat bone scan because they define me as "untreatable" due to my being allergic to bisphosphonates, still malnourished, and too old. That seems very narrow-minded: even if I can't reverse the osteoporosis it would be helpful to know how much worse it's getting, if only so I could take increased precautions against fractures.
It's not all doom and gloom this month though. Despite the continuing medical problems my emotional state is pretty good. I don't think it would be half so good if I wasn't restricting, but that's how it is. I'm still able to devote a fair amount of time to my creative interests, and don't seem to have lost too much energy. Heather is coping well with my relapse; she seems to trust by now that I will get it under control before it's too late. That's a good thing -- I really couldn't cope if Heather got upset about my relapse, that would create a vicious circle making my anorexia steadily worse.
After six weeks of heavy restricting, I started to get concerned about how fast my weight was dropping and the fact that my health was starting to suffer. I spent a week trying hard to get more of my synthetic feed into me. This just made my health worse -- it seems that my digestive system has deteriorated some more and I just can't tolerate the feed level that I used to be on. I've been flat-out in bed for a week, and was only able to get up again when I practically stopped having nutrition again. I was violently sick from forcing in extra feed beyond what my digestive system would cope with. And despite the extra feed, I still lost another 2 lbs over that week, meaning I'm now at my lowest weight since I was in my teens. The fact that I've continued to lose weight rapidly on an intake that previously kept me stable must logically mean that I'm now absorbing even less of the feed than before. This isn't a good situation: the way my digestive system has changed probably means that I won't be able to stop the weight loss for a long time yet, if at all. I don't want to remain on such a low intake but trying to take any more is making me ill.
I've kept Heather informed about what is going on and the fact that my present situation may become life-threatening in time. I think she understands that it's a real physical problem and not just an anorexic lack of will to take feed -- she has seen how hard I've been trying. There might still be some chance of my digestive system improving again if I'm gentle with it and try to very slowly rebuild the level of intake that I was on, but I've said to her that if the situation gets worse I'll consider going onto overnight intravenous feeding (SPN/TPN) to supplement what I can take by mouth. My digestive system is clearly too far gone for NG tube to be an option anymore: although NG might allow me to have a little more intake than oral it clearly wouldn't be enough with the amount of digestive function I now have). The doctors said a few years ago that my frail state meant that TPN would very risky and they weren't prepared to do it, but in those days NG feeding was still an option. Now the "rules have changed" -- with NG no longer being viable the risk/benefit balance shifts and, I think, makes TPN a viable option -- if only because I now can't see any other way of getting enough nutrition into me to survive. I'm not intending to let myself die, anyway, so I'm prepared to keep my options open.
My doctor is monitoring the situation. For once I have a GP who is sensible and is trying to work with me rather than just throwing me in hospital, which is what usually happened in the past. I am getting regular blood tests that should hopefully give us advance warning of any serious risks, and of course Heather monitors my heart and blood-sugar at home every day.
Interestingly, I do seem to be feeling a little more comfortable with my weight, although I still experience the "fat feelings" quite regularly. At other times I can be rational and see that I now look very unwell and thin. My face, in particular, has changed in the last two months -- all the bony parts are more prominent and everything else looks "sunken-in". I don't like that, I feel as though I'm letting Heather down in a way (I feel bad enough already how much of my looks and my health I've lost, this just makes it worse). I have to admit that there's still a part of me that wants to lose more weight, perhaps get back to some of the horribly low weights I achieved in my teens (when I was less tall), but there's also the more rational part that is concerned about the fact that I no longer seem to be able to control the weight loss. I'm not really sure how worried I should be about the situation, and I don't want Heather worrying unnecessarily, and I have been at very low weight for most of my life and have often survived situations which my doctors felt sure I wouldn't. But on the other hand I'm right down to half a "normal" weight for my height and on a very low intake -- by all usual medical standards I would be regarded as at serious risk. We'll just have to see what happens, I guess.
Well, a long time has passed since the last entry. Until last month, things were going pretty fine -- I managed to get my weight up a bit during the Autumn and Winter, and this probably helped to moderate the severity of the usual crop of winter infections that I had. Anyway, I did have a few weeks stuck in bed with one thing or another, but that's quite usual for me in the winter. I had just one life-threatening illness, an episode of septicemia that put me in hospital at Christmas. Heather was worried sick by this, thinking that she could really lose me anytime, but yet again the deities were smiling on me and I pulled through after several massive doses of antibiotics -- though I had a pretty unpleasant time with the whole episode, I have to say.
Subsequently, despite occasional glitches and mini-relapses, I've pretty much kept my weight up so far this year. Not to anything very healthy I have to admit, but at least out of the "critically ill" range where it normally hovers (or so the doctors say). But as spring progresses, I'm finding it harder and harder to maintain.
Anyway, about four weeks ago I fell over onto the floor. Nothing spectacular, it was even carpeted. Nonetheless, I broke two ribs and dislocated my shoulder, a reminder of how severe my osteoporosis is. This kept me in a great deal of pain for quite some time. Broken ribs are nasty at the best of times -- you can't set them or immobilise them in any way -- and mine were broken right at the back, directly behind the lungs, so as to cause maximum pain when breathing. So I had a really miserable few weeks, marginally mitigated by an increase in my morphine dosage thanks to my GP and pain management specialist. I still have to be careful -- although the ribs have knitted together, the join won't be at full strength yet and I have to be very careful not to re-break them. My shoulder seems to have taken just as long to heal up and was also rather painful, though not on the scale of the ribs.
So this brings us to the present day. Summer has more-or-less arrived and, of course, people are wearing lighter clothing. This brings me face-to-face with my body, which is bigger than 'usual'. I've spent months trying to resist the temptation to restrict and go back to a more familiar weight, but it's become a virtual impossibility lately. My intake in recent days has been atrocious. I know I shouldn't keep that up -- so far this year I've had reasonable health and strength and I don't want to lose that -- but it's just so hard... and getting harder day by day as spring gives way to summer. By my standards, I've done amazingly well to maintain a "winter weight" until May, but I know I'm slipping now. I need to control the slip, restrict rather than starve, so as to achieve some sort of balance between physical health and emotional comfort. I just wish that for once, my mind could be quiet and not plagued with anorexic thoughts, but after so long with the illness I know that's simply cloud-cuckoo thinking. My weight has crashed every summer for the last 35 years at least, and I very much doubt I can stop it now. All I can do is try to moderate it, and perhaps I'll have another lucky escape like I did last summer -- then, I got down to a very low weight but (surprisingly) didn't suffer any major worsening of health problems. I didn't have much energy to do anything, though, and it worried Heather a great deal -- I don't want that to happen again, but happen it probably will.
Still, I like to end on a positive note whenever I can, and this year my emotional well-being has been pretty good aside from the usual background panic about my weight (which I just put up with). I've made more friends and been more socially active than for several years previously, and my activities with hobbies and therapeutic work have been making good progress. All in all, I'm about as happy as I ever get... if I could just stop panicking about my weight. Still, I guess that won't be such a problem for very long... I do become more comfortable with my body when at lower weight.
And to really finish this time, I am delighted to report that Janine Jansen, a BBC reporter who did a major piece about my life with anorexia last spring, has just won a second major award for that piece. It was a genuinely excellent piece and has brought a lot of positive feedback, as well as contributing to a greater number of sufferers seeking help this year, and adding to the political pressure that eventually led to the local NHS finally getting around to opening a (very small) eating disorders unit here in the South-West, finally making it possible for sufferers to get treatment without having to travel hundreds of miles out of their home region. Well done, Janine!... in fact I believe that she is planning to make a follow-up piece sometime soon, showing how things have changed locally in the last year and how I'm doing with my life.
In 1998 Natalie was described as "untreatable and terminal" by the medical profession. She was told that she was expected to die in May or June of that year...
On the 1st of December 2004 Natalie will be celebrating her 40th birthday! While her condition still plays a major part in her life she has prooved that it is possible to live with the consequences of her illness and fight on to see in another decade. Her story has touched the lives of hundreds of people around the world and I am sure you will wish with me, Heather, "a Happy birthday to Natalie."
Birthday wishes can be mailed through this website or you can send cards to: Natalie Winter, c/o EDSHED, PO BOX 348, Exeter EX4 2YQ, Devon, England.
Ooops, I haven't updated in a very long time -- rather remiss of me, and regular readers have been contacting me too see if I'm all right. So an update is very much due...
Firstly, sincere thanks to all who responded to the "Birthday Announcement" that Heather placed on this page without my knowledge! I was very touched by how many people got in contact, sent cards and even gifts.
Now, where to start with the update? A lot has happened, but a lot of it has not been so much different to what has happened in previous years -- losing weight in the summer (though not as badly as we'd feared), gaining a little back in the Autumn, and a whole slew of winter infections as usual. I shan't bother going into details. Emotionally things have been pretty good. Dawnmist has kept me busy for all the time that I've been well enough to get out of bed and do things, and I've kept up all my usual hobbies as much as possible given my health. Up till the end of 2004, it was all very much "business as usual" for me.
Things got a bit more difficult as 2005 dawned. My anorexia, which had been relatively well-behaved so far, flared up again just before New Year. I'm not sure of all the reasons, though in part I think it was because I was so horrified by the terrible events in countries around the Indian Ocean. Once I'd slipped back into restricting my intake, the whole addiction aspect came back into play and I continued to find it hard to keep from losing weight. So far this year, I've had short periods of doing a little better in between weeks of restriction. So I've lost quite a bit of weight though I'm not yet anywhere near my "low point".
The most serious health problem occurred in late March... Heather and I had gone out to a nearby lake to sail our radio-controlled model boat, and when we got there the weather was rather cold and misty, although it had been pleasant and springlike down in the city where we live. We sailed anyway. We had some friends with us and all had a good time, and I taught our friends to drive the boat. All fine so far... then on the way home I suddenly came over really dizzy and faint, and had to pull off the road and hand over driving the car to Heather. Upon arriving home I crawled off to bed, as is my usual way when this sort of thing happens. I expected that I'd feel awful for a few hours and then gradually recover, and Heather and my friends took turns to keep an eye on me and perform regular blood-pressure checks -- as is usual in these circumstances, my pressure was alarmingly low and my heart rhythm rather irregular. Then, without warning, simple dizziness and nausea (which I'm used to) was replaced by crushing retrosternal pain spreading right down my left arm and I felt like I couldn't breathe. I yelled, I think (well, as loudly as I could), then most of the rest was a blur. I remember the ambulance, being given oxygen and carted off to hospital -- I'd had another heart attack, my third in fact.
We still don't know quite what triggered the heart attack this time, but we think it's likely that I became chilled while at the lake and didn't realise it. All the rest of our group complained of being cold and all were wearing at least as much clothing as I was -- I suppose I was too engrossed in what I was doing to notice the cold. And I know that last time I had a heart attack, it was definitely caused by me becoming slightly hypothermic. My heart is in a pretty dreadful state, and has been for years -- the technical term is anorexic cardiomyopathy, what this means is that my heart muscle has been eroded and destroyed over the years due to prolonged protein malnutrition. It's a well-known consequence of severe and prolonged anorexia... and mine has certainly been both severe and prolonged!
So, anyhow, after a while the hospital decided there wasn't a lot more they could do since I don't have coronary heart disease, atherosclerosis or any of that sort of thing, which is the usual cause of heart attacks in wealthy Western nations. Anorexic cardiomyopathy is not treatable, so after monitoring me for a while and checking that my electrolytes were OK, I was allowed home. Which was just as well, since the hospital had not managed to find me a compressed-air mattress (how pathetic is that?!) and I was already covered with pressure sores. I spent the next two weeks in bed feeling really awful, just totally and utterly exhausted. Not unexpected I suppose. More recently I've been very slowly starting to do more of my usual activities, but being very careful both to pace myself and to stay warm -- I am quite concerned about the risk of another heart attack and really don't want that. Heather and my friends were very badly shaken and upset by the whole experience.
And that brings us up to the present day. I'm still lacking in energy and having to take it easy, and I'm trying, with very limited success, to fight against the urge to restrict my intake. It's getting well into that time of year when I habitually experience a rapid drop in weight, as usual I'm finding it increasingly difficult to emotionally cope with being 'fat'. Although I know that objectively I'm still very emaciated, I'm at a high weight by my usual standards for this time of year -- and it's getting harder and harder to deal with this as time goes on. I need to keep the anorexia under control though, because I already have quite enough heart trouble and don't want any more. The next few months will tell, I guess.
Once again, people have been making worried enquiries as to my health, or even whether I'm still alive. I hadn't been updating my story because most of my "functional time" was being taken up either with my Dawnmist activities or with EDSHED counselling, and my health was stable. Not "good", but "stable" -- every winter was a succession of infections as usual, and my functional time remained quite limited, but I was managing to hold my weight fairly steady and a fair bit better than it had been in recent years. I was still very much in the anorexic weight range, but much less alarmingly so than has been my habit.
My emotional health has been, and remains, pretty good. My technical work with Dawnmist has gone from strength to strength, confirming that my earlier work to "re-train" my brain around the damage it suffered had been more successful than I'd dared to hope. I was disappointed but not particularly surprised to find that the increase in weight failed to produce any increase in functionality or decrease in pain. In fact, rather the opposite happened: because my bones, joints, muscles and so on are so damaged, an increased weight actually increased the pain I suffered and decreased my functionality. I did my best to "stick with it" and tolerate the increased weight in the hope that my health might improve over time, but it simply did not happen.
Over a year ago I consulted my various doctors to see whether an increase in my pain medication (morphine) or indeed any other treatments to increase my functionality and/or decrease pain would be possible. This was entirely logical: the required dose of morphine (and other pain meds) is proportionate to the patient's body weight, and as I had gained weight I realised that I would need a higher dose to stay even as functional as I had been at low weight.
Nothing came of this for a long time despite reminders; eventually, this spring I was referred for physiotherapy, but on examination the physio people decided that I was already doing all the sensible things like pacing myself and resting, and that there was nothing they could do to ameliorate the pain. They did say that they could, if I wanted, put me through gentle exercises which might help increase my strength and mobility a little, but that it would inevitably add to my pain and exhaustion. I felt that this would be counterproductive, as did the physios. They recommended to my doctor that my pain meds be increased, just as I had requested. However my GP has now decided he is not willing to raise my morphine dose.
By this time I was already struggling greatly with the higher weight. I had only managed to convince myself to allow a weight gain in the hope that it would make me more functional, and it was clearly failing to achieve this. Also, all the old emotional pains about body shape and weight were coming back stronger and stronger and all in all I grew to feel that it was simply pointless to torture myself emotionally by forcing myself to hold a higher weight when it had a detrimental effect on my overall quality of life. I decided to let my weight drop back, though hopefully not to the very low levels I have sometimes been at, and I wanted to try to lose the weight in a relatively healthy (slow) way rather than by starvation. All of this, I hoped, would improve my overall quality of life, especially since it was now clear that I would not be able to obtain the dose of morphine needed to control my pain at the higher weight.
The trouble is, like most anorexics I "don't have any middle gears" at least when it comes to nutrition. As soon as I relaxed the pressure on myself to take the higher level of feed that had held my weight, I found it very hard emotionally to make myself take any at all -- old habits die hard, it seems! Worse than that, my digestive system, which had been decidedly touchy anyway with the increased intake, started to cause more trouble, adding a physical dimension to my difficulty in taking nutrition: it's hard enough to take the stuff when I feel so negative about my body, but add nausea, intestinal pain and retching to the equation and the whole concept of nutrition seems quite repulsive.
So that's where I am today -- taking in little or no feed and losing weight fast. And of course I feel tons better both physically and emotionally than I did when I was holding. I still intend to try to stop losing when I reach some sort of "compromise weight" where my joints and bones are not so strained but I am not so malnourished as to become too weak to function; at such a weight I should be as functional as is possible for me, certainly better than I have been at the higher weight. However I know that it's going to be very difficult, now I've started losing weight, to moderate or stop that loss. We shall have to see what happens...
Once again people have been asking after me, so I shall update...
I managed to stop the slide back into anorexia that I mentioned above, and my weight is now stable again at, for me, quite a high value (still clinically anorexic, I should add). As I reported before, I'm functioning to a moderate extent and much time is spent with my Dawnmist commitments, but I am still having just as much trouble with "down-time" as I was in my last post, and also with pain from my joints, bones, muscles and so on. My specialists are of the opinion that there is not a great deal to be done about that, it's simply a consequence of the irreparable damage I have done to my body over the years. It does restrict my enjoyment of life quite considerably though.
I still struggle emotionally with being at a better weight. I have put away the scales and am scrupulously avoiding either weighing myself or measuring any part of my body --- I am aware that if I knew how much I weighed I would almost certainly go back into an anorexic panic and completely thwart the better state of health that I am presently in. Even with these precautions I have to remonstrate with myself daily not to go back into anorexia.
After several years of slowly improving nutrition (with the synthetics) I found that I was able to start introducing very small amounts of a few easily-digested real foods into my diet with only moderate symptoms of digestive trouble. Over the last year or so I have slowly "re-trained" my remaining digestive capacity so that I can get a proportion of my diet from real foods once again. This was quite a surprise to me and the doctors alike.
I am still very restricted in what, and how much, I can tolerate of real foods, and would be quite unable to get a sufficient or balanced diet without continuing with the synthetics as well, and it seems unlikely in the extreme that I would ever regain anything like "normal" digestion --- still, it shows that even a badly broken digestive system may recover at least a small amount of functionality after a prolonged period of synthetic feeding and recovery. I should also add that I do not properly digest much of the real food that I can now tolerate; it's more the case that it no longer makes me throw up as it once did. I have noticed that if I eat a significant proportion of real foods I am much more prone to congestion of the intestines and therefore have to use the prescribed laxatives more frequently. So it's highly debatable how much nutrition I am actually able to absorb from real foods and my digestion is still very far from properly functional. Still, it does give me slightly more variety than synthetics alone.
One slight health worry is that I have taken several falls lately, one of which resulted in a period of unconsciousness followed by a hospital admission with concussion. It is not clear what the cause is --- in the latter event I appeared, according to the people I was with, to lose consciousness before falling. When I was at very low weight I suffered often with syncopal episodes (low blood-pressure "greyouts"), but my blood pressure has risen a little as I regained some weight and these recent falls have not felt the same as the syncopal episodes. The doctors are keeping a "watching brief" at the moment about this, since the cause is not at all clear. Very fortunately I have not broken any bones in the recent falls, though I have suffered some nasty sprains and bruises, which heal very slowly in me.
I also seem to still be just as susceptible to infections as ever. Each winter is a succession of heavy colds, flu, norovirus and whatever other bugs are around, and last summer I had cellulitis and septicemia again as a result of a simple insect bite. It seems that the healthier weight I'm now at has had little, if any, benefit for my immune system.
But I'm very pleased that I appear to have recovered, to some extent, from the brain damage I suffered. Clearly, lost brain tissue does not re-grow, but the human brain has a high degree of redundancy and can be "re-trained" even after severe damage in many cases. I feel that my general intellect is now not too far short of what it used to be, and my memory is certainly better than it has been, though far from being as good as it once was. I have been working hard at my "brain-therapy" over the last few years by challenging myself and studying new subjects, the latest of which is degree-level Chemistry (I did do some chemistry at university as part of my medical engineering studies but gave it up after the first year, and I wanted to upgrade my knowledge of it as part of my "brain-therapy"). I have set up a well-equipped chemistry lab at home so the work is not only theoretical. I was very fortunate in that I have a friend who recently retired as an industrial chemist, and he gave me a huge amount of lab equipment that I would otherwise never have been able to afford, including a spectrophotometer, centrifuge, two vacuum pumps, binocular microscope and a vast set of jointed glassware ("Quickfit", for those into chemistry, including the biggest Soxhlet extractor I have ever seen!). I have also built several other items of lab equipment using my knowledge of electronics.
Emotionally speaking, things are good. I am as happy as I ever have been, in spite of the physical disabilities and pain that still affect me. If I could have one wish, it would be that I didn't have the level of "down-time" that I still experience; I have a very active mind and become highly frustrated (and then depressed) when I'm stuck in bed because my body won't co-operate with my mind, and it's quite common for me to have anything up to four days on the trot when I'm too weak and in pain to do anything but lie in bed, not even read a book.
Finally, I am still doing the voluntary counselling for other ED sufferers that I have done for many years. I feel that I can contribute something positive to the community of ED sufferers and that makes me feel much better about myself than I otherwise would. Before I became too seriously ill to work (1997) I was very much of a workaholic -- perhaps not healthy but it was good for my self esteem -- and after retiring I felt rather useless and therefore bad about myself for years. Lately I feel rather better about myself again as I feel I can still contribute in some way to the good of humanity even though I'm by no means well enough to be in employment.
Last of all, I'd like to say a big Thank You to my many online and real-life friends who have been in touch since I last updated this blog to ask how I was and send their best wishes.
Once again people have been asking after me, so I here's what's happened since last time...
As of the Spring of 2010, everything I wrote in the last update (March 2009) was still correct and up-to-date, so I'd been stable for a whole year, the only problems being the usual recurring ones. I'd even just come off Prozac and was doing fine emotionally, holding my best-ever weight and not getting too bothered by it.
Then, in June, a whole series of things went wrong in my life. Many were just annoying and costly (car breakdown, hot water tank leaking, roof needed replacing etc etc) but the killer was that Macha, my favourite cat, was suddenly diagnosed with bowel cancer. At that point I was awfully upset and had to re-start the Prozac. Our vet did everything possible to save Macha but she didn't survive the massive surgery needed to clear out the cancer and she died only a week after diagnosis. Heather and I were distraught; I found I just couldn't make myself eat, at all. After about a week of starvation and extreme distress, something went wrong with my intestines and I was rushed to hospital in terrible pain with a totally jammed digestive system. Evidently the digestive function I had recovered was fragile and the sudden starvation and stress had made it fail again. Fortunately I didn't need surgery and after a few days of medical treatment things gradually started working again and I forced myself to take in some nutrition. After about a month I recovered more-or-less back to how I'd been before Macha died but still needed the Prozac.
Then some really odd things began to happen to my health. The myoclonus that I'd had since about 1998 became much more pronounced and forced me to stop doing any scientific work (because I kept breaking things as muscles went out of control) and I developed an unexplained patch of total numbness on my scalp (corresponding to division (1) of the trigeminal nerve, for anyone medically inclined). I thought I'd better get a referral to a neurologist, but before that got organised the numbness resolved, so I forgot about it.
Then, at the beginning of October, I started having fits one night and was rushed to hospital. They couldn't find any immediate "panic" symptoms (indicative of brain cancer or other utter emergency) and referred me to a neurologist via my GP. The fits continued, mostly but not always at night, and varied in type from the classic "grand mal" epileptic type (though relatively short) to things that looked more like generalised partial seizures. The individual episodes are short but occur in lengthy "clusters" and although consciousness returns rapidly, they often leave me confused and debilitated for hours afterwards. They also sometimes produce hemiparesis (paralysis of one side of the body) that can last for an hour or so, as well as incontinence, which I find emotionally very distressing (although medically it's not a big deal).
I've now seen the Neurologist and we presented him with a detailed "log" of what happened and when over the course of almost two months of this problem, and some video of my seizures -- Heather had worked hard to document exactly what was going on to help with the diagnosis. You may recall that I had a brain MRI scan in 1998 which found widespread myelin loss, and the Neurologist I saw then said this was due to extreme anorexia and correlated with the mental impairment I suffered at that time, and then a follow-on MRI in 2001 found that this damage had become worse and I had also developed frontal-lobe lesions -- that's what started me off on the "brain-retraining" that I've mentioned frequently in my updates. It seems likely to me that although my anorexia is now much improved, my brain has probably suffered further damage and this has triggered epilepsy. I'm now waiting to go into hospital for EEG tests and another brain scan to try to definitively track down what is going on and treat it. But in the meantime it's very debilitating as well as worrying, and of course I'm not allowed to drive the car, so poor Heather now has to do all the driving rather than sharing with me -- and Heather's own health is far from perfect.
So that's where I am now, sort of in limbo waiting for tests and treatment. I'll post again when I know more. In the meantime, thanks and best wishes to everyone who has mailed to ask after me.
A vast amount has happened since my last post, not all of it good.
My weight and nutrition has been the least of my problems: although I still have to consciously remind myself to eat every single day, I have held a consistent, and (for me) very good weight for over a year now. I don't weigh myself, because that would be to invite a relapse, but I can tell from how I look and how my clothes fit that my weight is stable and probably higher than I've ever held before in my life. I'd say that's a pretty good "recovery" for someone whom the NHS labelled "untreatable and terminal" ten years ago. I still have all the old anorexic thoughts just as I always did, and I dare say I always will, but having learnt to cope better with the dreadful experiences of my childhood I can now live and function without starving them away. All this is all to the good, of course, but emotional recovery came too late for any physical recovery: although my weight is so much improved, none of my associated health problems seem to have improved one iota, and what's more I have developed additional problems, which the rest of this post is about.
The "epilepsy" wasn't, it turned out in March: the neurologist told me that the EEG pattern, while chaotic, was not characteristic of epilepsy. This was a real surprise both to me and Heather. The neurologist then managed to convince himself, and tried to convince us, that I had some sort of somatoform disorder -- and tried to refer me to the local "loony bin". We were utterly disgusted with this: I have never had any history of somatising or faking anything and it was totally unreasonable for him to assume that just because I had a history of anorexia, anything else I might have "must" also be "psychiatric".
Well, I could see that the neurologist wasn't going to be of any help, since he refused to entertain the possibility of a biological cause of my fits, so I dug out my old medical textbooks and boned-up on epilepsy and other seizures, then started searching through recent medical research in the field. Somehow, I had a hunch that serotonin levels might be something to do with it, and that proved to be the key I needed: I discovered that in the last decade or so, long after I stopped working in the medical field, a condition known as Serotonin Toxic Syndrome (STS) had been documented. This is an iatrogenic (medically caused) condition that usually results from a combination of serotoninergic medications in susceptible patients, and one of its principal manifestations is epilepsy-like seizures. Bingo, I thought -- some three months before the fits began, I'd restarted Prozac, and I've regularly used triptan drugs to treat migraines for the last 14 years. Further research indicated that SSRIs (of which Prozac is one) and Triptans were one of the combinations most often implicated in STS, and furthermore the USA's FDA had written to all US prescribers in 2006 warning them to never prescribe SSRIs and Triptans together. For some reason, this issue has not been widely publicised in the UK.
This seemed like proof enough to me to stop Prozac and avoid Triptans except as a last resort, and sure enough, within 48 hours the seizures had disappeared and never returned. After about a month, even the myoclonus that I'd had for 14 years disappeared, so clearly that too was a drug side effect and not a result of brain damage at all. The only remaining mysteries were why it had taken so long for the seizures to appear after restarting Prozac, and why none had happened in all the previous years when I'd taken Prozac.
I added a serotonin-modelling section to my computer-software "anorexic metabolism" model and put in my personal parameters, and I had the answer to both mysteries. The long delay to onset of seizures was due to the fact that Prozac is metabolised unusually slowly; the model showed that it would take more than three months to reach steady-state concentration in my body, so if my seizure threshold was 80-90% of the steady-state level, the onset time fitted perfectly. This assumption also explained why I'd never had seizures previously: re-running the model with my body in a very anorexic state showed that the serotonin level simply could not reach the seizure threshold -- the malnutrition had simply left my body unable to synthesise enough serotonin to be a problem.
So I had a complete explanation of the entire seizure issue. I wrote to the neurologist and told him what I'd discovered; he managed to concede that I'd discovered the true problem without actually admitting that he'd been wrong -- to me, his letter was a masterpiece of doublespeak that any politician would have been proud of. Still, at least the seizures were sorted; I just had to stay off the Prozac (or any other SSRI). I also found that using the Triptans for migraine, without Prozac, caused no problem. So that means no more antidepressants for me: SSRIs are out, I don't tolerate tricyclics, and the MAOIs are just too dangerous. Thus far it hasn't been a problem, even with the other health problems I'm about to describe -- I just hope it stays that way!
So, I had no more fits after the end of March. After two months recuperation I was starting to feel quite a lot better, as the frequent seizures had left me permanently exhausted and debilitated. Then the next health disaster happened...
After the emergency admission to hospital with acute abdominal pain in June 2010, which had been attributed to severe constipation (due to the damage to my intestines), the same thing had happened again in January 2011 and I'd been started on treatment with macrogol, which seemed to be helping. At the start of June, the same thing happened again. This time, believing that constipation really had been the issue all along, I got my GP to prescribe me a dose of Picolax, a very potent laxative normally only used for pre-surgical bowel preparation, where the whole intestine had to be empty -- this should shift absolutely any constipation. Well, nothing came out, and the pain got worse. This is an emergency situation, so I called for an ambulance. Ho hum, here we go again...
This time, the doctors treating me didn't simply assume it was constipation, and ordered an ultrasound scan. It turned out that I had a severe infection of the gall-bladder and biliary tract (cholangitis), and furthermore that my gall-bladder was brim-full of large stones and the whole biliary tract was grossly thickened and enlarged, showing that I must have had gall-bladder disease (cholecystitis) for many years. Bingo, another mystery explained!
In hindsight it was quite clear that the previous "constipation" episodes for which I'd been hospitalised, as well as several lesser attacks which I got through at home, had all been flare-ups of cholecystitis. Going right back to 1998, when I'd first become unable to keep food down and had suffered liver disease and jaundice, which my then GP had assumed was directly related to anorexia: I checked back to the blood tests done then, and with the knowledge that I had severe cholecystitis all became clear -- what I'd had back then was almost certainly choledocholithiasis, a complication where a large stone emerges from the gall-bladder and then gets stuck in the common bile duct, causing the bile outflow of the liver to block up (cholestasis) and leading to liver disease and cholestatic jaundice. What's more, in 1999, when I was first referred to a gastroenterologist for the digestive problems, it had occurred to me that a biliary-tract problem might be present and I had asked him about that. But he had strenuously denied (on the basis of no medical tests bar a simple barium swallow) that there was "anything" wrong with my digestive system and it was all just "psychological" -- I ranted considerably about that in this blog back in 1999.
Anyway, back to present day, I was put on high-dose antibiotics and intravenous fluid (as I couldn't even keep water down), and after a couple of days the infection had subsided to the point where my intestines were working again and I was allowed home to convalesce, and put on the waiting list for MRCP (Magnetic Resonance Cholangiopancreatography, a method of accurately imaging the biliary tract) followed by cholecystectomy -- surgical removal of the gall-bladder. I remembered, interestingly, that my mother had had exactly the same condition when she was my age, and discovered after a bit of research that severe anorexia could actually trigger cholecystitis. Well, that explained that.
The very next day, it all happened again, but this time the pain was even more intense. Back to hospital... and it turned out that I'd developed choledocholithiasis -- a stone had come out of my gall-bladder and blocked my common bile duct. This persisted for three days, in which time I became jaundiced and my liver function tests went crazy. I had the MRCP on an emergency basis, so that if the stuck stone didn't clear of its own accord I could have a surgical procedure (ERCP) to shift the stone. Just at the point where it was looking like an ERCP (which does carry some risks) would be essential, the stone passed naturally, a big relief. The treatment team wanted the cholecystectomy done immediately (because choledocholithiasis tends to recur) but there is a huge waiting list even for "urgent" treatment, so after a few days to get over the worst effects, I came home again with even more antibiotics. I was so drained and weak after all this that I pretty much just slept for the first week.
Since coming out of hospital I've had two more episodes of choledocholithiasis, but fortunately these must have been smaller stones, since both passed naturally within 48 hours and I was able to stay at home. I'm still pretty run-down after all this, and I've been home for almost a month.
A couple of weeks ago, I realised that I still hadn't heard anything about when the cholecystectomy would be performed, even though I'd been told it was very urgent, and I'd said that I'd accept an admission at short notice in case a cancellation came up, or would even go to any hospital in Devon if it would help. I called the surgeon's secretary, and found out that after all that I'd been placed on the non-urgent waiting list. By now, Heather and I were becoming pretty anxious about the whole thing. Happily, my (adoptive) sister Christi, who is studying to become a barrister, came to visit and to act as "lawyer in heavy boots" to hand out any necessary legal kickings to people who needed them. She did a lot of studying of the so-called NHS Constitution and the statutory basis for it, and discovered that many of the apparent promises in that document were hollow. So instead she enlisted the assistance of a very helpful lady from Devon PALS (Patient Advisory/Liaison Service) who helped us to make my case to the people in charge of commissioning clinical services and the surgeon in charge of my case. The eventual outcome, after a certain amount of chasing-up by phone, was that I now have a date for the operation of 22 July, just over a fortnight hence.
That's good. Okay, I'll have waited six weeks more than the doctors wanted me to have to, but from what I hear that's good going for our local health trust: I hear that the non-urgent waiting list for cholecystectomy extends well into next year and even the urgent one is months long. What's more, a little bird tells me (I don't want to drop anyone in it!) that the Trust is already over one million pounds overspent on this year's budget, just 3 months into the financial year, and is looking to make cuts.
Obviously, the fact that I'm much less strong and healthy than most women of my age could be an issue with the surgery, but I'll know more after the pre-op assessment next week. At least I should be a good deal stronger than I was when my weight was very low, and cholecystectomy is normally done laparoscopically ("keyhole surgery") and is therefore not too stressful on the body; indeed it's normally done as day surgery. There's a possibility that the surgeon will have to convert to an "open" operation if the damage to my gall-bladder makes it impossible to extract laparoscopically, in which case the op would become rather more serious and I'd have to stay in hospital a while. Nonetheless, when my mother had her cholecystectomy in the early 1990's, it was always done as an open operation, and she got through it OK even though she was really emaciated at the time and had a number of complications which stretched her op out to five hours. That's quite reassuring to know; obviously, though, I'll make sure the surgeon is aware of my various health issues.
Anyone would have thought, would they not, that that was an entirely sufficient list of health problems for a six-month period since my last post? But no... about ten days ago I discovered a largish lump in my right breast. Here we go again...
You may recall that I'd written before about breast lumps -- some ten years back I discovered what turned out to be small and benign "nodules" in both breasts, probably resulting from the defective Trilucent breast implants I once had, and had to be removed because they had leaked and caused infection. Well, the new lump is totally different, as well as being in a different place, and has two of the "red flag" features that give rise to a suspicion of cancer (specifically, the lump is hard and irregular, and pretty much fixed in place). The GP immediately referred me to the breast clinic, and I'm due there early next week -- I'll post again as soon as I know anything.
I was very surprised to find a fairly big lump, as I self-examine regularly (there's a strong history of breast cancer in my family and I don't want to take chances). It was actually growing noticeably over the course of a few days, which is also worrying. I stopped taking HRT -- that can often help slow down breast lumps, cancerous or benign, and I was going to stop anyway a couple of weeks prior to the cholecystectomy to minimise the risk of thrombo-embolic disease during and after the surgery. The lump does not appear to have grown any further since a day or two after I stopped, which implies that whatever it is, it's estrogen-sensitive. Although the lump has some worrying features it might still be benign, and even if it isn't, I've caught it quickly so it should be very treatable. I'm quite worried, I must admit, but will just have to see what it turns out to be.
With all these health problems going on, I have done practically nothing with my hobbies or with my Dawnmist work since last year. That can't be helped, but I truly am "sick and tired of being sick and tired". I can only hope that things improve once the gall-bladder and the breast lump are dealt with.
Oh well... I'm now feeling totally exhausted after simply writing this post; that's how run-down I am at present. Off we go, back to bed...
It took rather longer than expected for me to get over all the health problems I wrote about in July...
First of all, the breast lump turned out to be a close group of six fluid-filled cysts (hence the irregular shape), and the fluid was under surprising pressure (hence they felt hard). Just knowing this was a big relief, since cysts are almost always benign. The mammogram hurt like heck on the affected breast (cysts are very sensitive to compression) and showed nothing useful.
A few days later I had the cysts drained using ultrasound-guided FNAC, and the cytology came back clear, so it was all sorted... I thought.
The cholecystectomy went fairly smoothly: although the state of my biliary tract meant that I spent twice as long as usual under anaesthetic, it was completed laparoscopically. I was, not surprisingly, very run-down afterwards, and recovery was slow. Because of the load that the surgery had placed on my body, my immunity was even lower than usual, so I had a whole slew of opportunistic infections, annoying but not dangerous, during convalenscence. It also took much longer than normal for the incisions to heal: knowing the state of my body I left the adhesive sutures in-situ for twice the usual time, but then had to remove them lest they themselves become a source of infection, and at that point, two of the four incisions used for laparoscopic cholecystectomy "popped" and bled. Luckily I keep adhesive sutures and semi-permeable dressings at home anyway and was able to sort them out.
Among the various infections I had while getting over the surgery, one was a real nuisance: a dental abscess. Evidently there had long been a tiny gap between one of my fillings and the tooth itself, and while my immune system was below par it developed into a pocket of disgusting gunk, which I discovered when the filling dropped out and released it. Ugh. Off to the emergency dental people at the local hospital (again)...
As I've mentioned before in this blog, I have a congenital oddity in my teeth: their roots are kinked, making them very difficult to extract, and on one occasion an unsuspecting dentist, who failed to consider the severity of my osteoporosis, had snapped off a good-sized chunk of bone along with one of my wisdom teeth. Well, this latest tooth lived up to the usual standard: it took the dentist well over an hour to get all of it out, by which time I was extremely battered and bruised and had to crawl off home to bed with an awful lot of painkillers. The dentist insisted that she had definitely cleared out all the infectious matter and therefore I wouldn't need antibiotic cover.
Well, guess what? She hadn't, and after a few days I developed a second abscess in the jaw itself. Despite quickly getting antibiotics, this took a long time to clear up, and broke right through the side of the gums, which was extremely painful. It's finally just about healed up now, as I write.
Even after this, my tribulations weren't over -- the breast cyst came back. This didn't surprise me greatly, as they commonly do return if they are merely drained rather than removed surgically. So I had it drained again last week. I'm going back to the hospital tomorrow to have it looked at again and to discuss how many more times (if any) it's worth trying to drain it before giving up on that approach and removing it surgically.
That brings us up to date. I'm just getting properly back on my feet now, seven weeks after the cholecystectomy, and with a bit of a backlog of Dawnmist work to get on top of -- but there's yet another problem brewing...
It's quite common, after cholecystectomy, to experience changes in one's digestion, and I certainly seem to have done so. It's too soon to be conclusive, but I'm having far more trouble with even the small range of foods that my intestines could tolerate after all the years of damage and have had to cut out several previously-tolerated foods -- lactose seems to be the major determinant; I've always had a limited tolerance to that, but being a strict vegetarian and intolerant to soya, I'm rather dependent on dairy produce for protein. This may well prove to be a serious problem and at worst may mean I'd have to go back to synthetic feeding. I'll just have to wait and see.
In spite of all this, I'm fine emotionally. I'd been starting to get a little bit stir-crazy after being confined to bed for such a long time, and I feel much better now I'm up and about, though still weak physically. I used some of the time that I was laid up to think up a long list of new ideas for interesting projects and new Dawnmist products, so I've got plenty to look forward to doing. But above all, I want to try and spend some quality time with Heather and get out and about rather than be stuck at home. Poor old Heather has had to put up with month after month of me being ill and needing more looking-after than usual.
Finally, many thanks to all those friends who have sent me emails, cards, phone messages and gifts while I've been ill, it's all very much appreciated. And of course thanks as ever to Heather.