Last week, the gastroenterologist told me that I'm too ill to have an intravenous feeding line implanted. My weight is too low and the state of various major body systems is too precarious; he feels that there is an unreasonable risk of killing me by implanting a line. He also tells me that my digestive system is too damaged for an enteral feeding line to be implanted into my stomach or duodenum ('PEG' and 'PEJ' tubes).
The only option seems to be nasogastric tube feeding on a round-the-clock basis, so that I can be fed constantly with synthetics at the highest rate that my system can take. The intravenous route might become an option again in the future if my medical state improves, though this is probably unlikely. I don't know what will happen as my digestive system deteriorates any further. Well, I do: I'll die, eventually. This is only a temporary solution to extend my life a little.
Right now, I'm waiting to be admitted to hospital: because my health is poor I will have to be inpatient for a while to be stabilised. When I'm known to be OK with the tube feeding I will be sent home with an enteral feeding pump and a supply of the appropriate synthetics.
I am on the urgent admissions list, everything is ready for me, but I am waiting for a hospital bed to become available, a perennial problem in the British public health system. Meanwhile my health is deteriorating faster than ever.
Now back home after my hospitalisation, and living entirely by tube-feeding. After a few problems, the new 24-hour feeding regime (with a different synthetic feed, which I tolerate better) appears to be working: while I'm still not able to take in enough nutrition to stabilise my weight at its present value, I am taking in a good deal more than I was able to by mouth - twenty to thirty percent more, in fact.
I have a microbore nasogastric tube which is much less intrusive and uncomfortable than the larger-bore tubes, although the risk of blockage is higher, and fequent careful flushing is essential to prevent this. I have a small portable feeding pump which can attach to my wheelchair, so my mobility is not impaired.
I'm hoping that the improved nutrition will give me a chance of slightly better health and life expectancy, though of course it's really only a temporary measure as my digestive system is still deteriorating further and my weight is still falling. But, assuming that we've got our arithmetic right, all the while I can maintain this intake then my weight should stabilise at a few pounds lower than its present value, which should significantly improve my chances.
I've now been living by tube-feeding for a whole month. My digestive
system continues to give problems, mostly extreme nausea and frequently
vomiting, so I have been unable to increase my intake of feed, despite
several attempts. My weight is continuing to drop, though much more slowly
than it was doing on oral synthetics before I had the tube.
Emotionally, I'm doing fine. I have adapted well to being on permanent hookup to the feeding machine, and I don't really find it terribly intrusive now. In fact, I find it less intrusive than my previous oral regime as I no longer have to stop whatever I'm doing every hour to take a small dose of feed.
And finally, here's a picture of me, complete with tube, taken just
after I came home from hospital last month...
Further rapid deterioration in what's left of my digestive system led to me being unable to tolerate the synthetic feed that I have been using, so my intake rapidly dropped to a very low level and I became ill very quickly. After a bit of consulting back and forth between me, my partner, my carer, and the medical team, I was switched to an elemental synthetic feed. This is basically a pre-digested "chemical soup" of amino-acids, dextrins and lots and lots of substances with very long technical names, and simply replaces the type of feed that I used to use.
So far, this has been successful: my intake is back up to the level I reached when I first left hospital after having the nasogastric tube put in, and I am tolerating this level adequately. My health is beginning to stabilise a little again. I've been on the elemental feed for about three weeks now.
This year's bone scan has just been performed at the local hospital. The news is worse than I expected -- my osteoporosis has become massively worse over the past year: despite treatment with HRT and high doses of calcium to try to slow its progress, my bones are in a state that would be bad even for a 90-year-old.
The doctors continue to be surprised that I'm still hanging on. I didn't believe it when they said I would die in May 98, nor have I been much inclined to believe any of the 'revised' life-expectancy predictions they've come up with since then. As far as I'm concerned, I'm planning to stay around just as long as I can.
The elemental feeding regime proved successful enough that contrary to expectations I actually regained a few pounds. Despite my low weight, this acted as a major "trigger" and caused me a great deal of emotional distress.
Additionally, I had also been experiencing increasingly bad side-effects from the drug that I depend on to give me the minimal intestinal function to absorb my feed. Apart from its immediate side effects (which include symptoms like those of Parkinson's disease) it carries such a high cancer risk that it is only licensed for single treatment usage over a time span not exceeding twelve weeks. I have been on three times the normal dose for well over a year now, which is decidedly risky. I recently came to feel that I simply could not tolerate the severity of the side-effects at that dose, and halved it. This has ameliorated, but not removed, the side-effects.
Of course it has also dramatically reduced my ability to tolerate the feed, and I have had to turn down my feed rate by a factor of three.
Despite the rational knowledge that this is a bad situation for my health, the emotional effects of going back into a state of starvation are still strongly appealing -- after all, I am still severely anorexic, I haven't magically recovered, I just learned to fight the anorexia a little better. So essentially, as a result of a combination of medical and emotional factors, I am in a full-blown relapse and losing weight fast.
I am worried.
I seem to have levelled out somewhat. I've returned to the full dose of the troublesome drug and am just having to put up with the side effects. This has enabled me to return to a more reasonable feed rate.
I did lose a bit of weight in the relapse, but I didn't get back to the low point that I hit during the summer. I still feel very stressed and triggered, knowing that I'm a few pounds above my low point, but at the moment I feel quite positive about life and my will to live is stronger than usual and it's helping me to fight against the overriding desire to lose more weight.
The feed rate I'm on won't totally halt the weight loss but should slow it down considerably. I think I'm doing quite well now, all things considered.
Although in many ways my life is happy at the moment, my depression is very strong. One of the reasons for this is that I have been suffering a great deal of physical pain from my various ailments, also I have been very upset emotionally about the weight I have gained since I started on the elemental feed last July. I was aware that I was gaining weight, but I tried very hard to put up with it, knowing that it would benefit my health and life expectancy. However, it proved to be impossible for me to accept being even a few pounds heavier than my habitual weight.
As a result of all this, I am relapsing badly into my anorexia. I have reduced my intake of feed a great deal, and my weight is dropping rapidly. At the moment I do not feel that this is any great cause for alarm, as my weight is still higher than it was last year. My only concern is that once I get back to my lower weight, I may find myself unable to stop starving again.
A more immediate concern is that my self-injury problem has become severe again. My arms and legs look like a battlefield and my loved ones are very concerned about me. I am trying hard to get this under control, but it is difficult.
On a more positive note, a few months ago I decided to speak out in the media about my experiences with anorexia in the hope that I could help others avoid going where I have gone. As a result of this, I have been the subject of several newspaper and magazine articles around the world, and have also done three or four TV appearances along with my partner Heather. At first, I found this rather scary, but I have received a great deal of very positive feedback about what I have done, and I am very glad that I did speak out.
My depression is now much better, and I have stopped self- injuring altogether for the moment at least. This is due partly to an increase in my dose of Prozac, but is perhaps more strongly due to the fact that I have been starving myself for two months and am now back at very low weight, which I still find is the best way I have of controlling my depression.
So far, the long period of starvation doesn't seem to have done anything too terrible to my health, apart from the occasional episode of dehydration, for which I was briefly hospitalised earlier this week. A couple of days on intravenous fluid sorted that out, though, and my doctor is currently trying to make arrangements for me to have intravenous rehydration facilities at home, ready for the next time it happens, so that I don't keep having to go to hospital.
As a result of the starvation, though, my digestive system seems to have suffered another downturn, and I now seem almost unable to tolerate any of the tube-feed. All the while I'm still intentionally starving myself, this doesn't really bother me, but looking ahead I can envisage a time when my weight will have dropped even lower and it will be a matter of life and death to get some nutrition into my body somehow. I've told my doctor that I would consider TPN (intravenous feeding) at that time, so we'll have to see what happens.
I spoke too soon -- just after writing the last entry, my health crashed. I've suffered a whole series of infections, one of which very nearly killed me. My resistance to infection, already poor, is now practically non-existent.
I decided eventually that tube feeding was simply too intrusive to tolerate, when I tried to go back on it after over two months of starvation, so I have given up on it. At the moment, I am just having the oral synthetic feed that I was on before the tube, and of course I'm losing weight because I can tolerate so little of it. But it's a quality-of-life issue: I just can't handle going back to tube (or intravenous) feeding, and if what I'm doing shortens my life then so be it -- at least I can move around without a feed pump in tow and without the constant discomfort of the tube. Not to mention the horrible emotional connotations that tube feeding has for me: an unbreakable association with hospital, weight gain and force-feeding.
I've been having heart/circulation problems, making me collapse frequently and causing another hospitalisation. I've also developed a breast lump which the doctor thinks may well be cancer, as a result of the digestive system drug that I've depended on for the last two-and-a-half years (it's not licensed for use for more than 3 months because it's known to be carcinogenic, and is banned outright in the USA and other countries). I'm waiting to have a biopsy done, and probably looking at a mastectomy (even if the lump turns out to be benign, it's very large in relation to my tiny breasts and it's fast-growing, so it will need to be removed). If it's cancerous I'll probably need chemotherapy as well, which will be very risky on my damaged and emaciated body. And if it's spread... well, I don't even want to think about that right now. There's a history of breast cancer in my family, so I know well what it does to women who have the misfortune to develop it.
I'm in a lot of pain and also very stressed and depressed by all this. This has made my other health problems worse. I've had to stop taking the suspect drug, and as a result my nutrition has gone to almost zero and I'm at my lowest weight for a year and falling fast.
I've also had a couple of fractures due to osteoporosis. One of these was due to my dentist extracting a rotten tooth, but my bones are so weak that a significant piece of skull came away with it! Needless to say, that was very unpleasant and is taking a long time to heal up.
With all these painful events, I've been depending on very strong painkillers such as morphine and heroin, and this has accidentally rekindled the drug addiction that I struggled badly with over the years.
All in all, I'm a bit of a mess. I feel very hurt by all this, since I had actually been doing relatively well emotionally until recently, and for once really wanted to live on and enjoy my life as much as my physical state will let me.
All of this is taking its toll on Heather too. She is depressed and worried about my condition, but she is resolutely pushing the health service to make sure I get the treatment I need, and is standing by me through all this. I'd be lost without her.
Well, the breast lump turned out to be benign, to my considerable relief. Still, it was confirmed to be a result of the digestive drug I used, so I have to stay off that. I'm now getting rather badly malnourished, but I simply cannot face going back on the tube. And of course, I'll still have to have the lump removed. And it's still very painful.
I have also been having other pain problems, from osteoporosis, arthritis and fibromyalgia, and also from killer migraines, a result of brain damage. My doctor tried me on a different pain-control regime, which just made me ill and in more pain. I have spent most of the last six weeks in bed.
As a result of that, I've gone back to being an opiate junkie, at least until I can get the doctors to prescribe something strong enough (morphine/heroin) on a continuous basis. I'm not too happy with that, I hoped I'd escaped that phase of my life many years ago. But this time, I'm using drugs strictly for pain relief, not as an escape from reality. I feel I really don't have any choice -- I've already been talked out of suicide once in the last two weeks, when the pain got too much to bear. I have finally been given a referral to the specialist pain control clinic at the local hospital, but I'm stuck in yet another waiting list, as usual.
I feel often that the medical profession has a dismissive attitude towards anorectics like myself -- they view the disease, and all its consequences, as "self-inflicted" and less deserving of help than other ailments. I know that if I had cancer, I could get the painkillers I need without all this fuss. Just because I'm an anorexic ex-addict I'm getting all this difficulty, and it has simply forced me back into illicit drug dependency.
On a slightly more positive note, I've been in the media again, with an article titled "Natalie defies the odds", reporting that I'm still very much alive and kicking some six months after the doctors' last estimate of when I would die, and re-iterating my complaints about the poor treatment of anorexia by the health service.
I feel like the last few months has been a constant battle with unsympathetic doctors, and an overloaded public health system. I'm still waiting for both the pain clinic and the breast lump removal.
My GP refused to treat me any more, basically because I am continuously blocking her from pushing me into hospital to live out the rest of my life, and she is annoyed by my refusal to go back on the tube. So I had to find another doctor in a hurry, since I was left without prescriptions for the drugs that keep me alive (including my synthetic nutrition).
My gastroenterologist seems to have had the same idea, and has discharged me from treatment citing my refusal to be tube-fed as the reason. He seems to fail to understand that I'm not just being gratuitously anorexic, but that tube-feeding is actually very unpleasant and intrusive.
I finally got to see a neurologist regarding the colossal migraines and muscle spasms that I get as a result of my brain damage. He has ordered a new brain scan to investigate how far the damage has progressed since the last scan 3 years ago, but yet again seemed to take a "what did I expect?" attitude, feeling that the brain damage is my own fault for starving myself. I swear that these people do not have the faintest understanding of anorexia. Do they think I like being terminally ill, disabled and in constant pain?
I am restricting again, probably due to all this stress. I've halved my nutrition intake in the last week.
I have been continuing with my educational and advocacy campaign: I've done another couple of media articles and have been invited to speak at two separate anorexia treatment units. I am also heavily involved in the local osteoporosis support group, where I am trying particularly to promote awareness of the needs of younger people with osteoporosis.
I had hoped that the next update would contain good news about the fight to get treatment for my pain, but no such luck. The consultant at the pain clinic did want to put me on methadone, which is commonly used as a painkiller in terminal illness, but my GP raised objections to this and so far I still haven't got the drug. The battle continues.
The consultant also referred me to the multidisciplinary pain control team at the hospital to see if they could help me with a bit of physical rehabilitation, so that I could have a better quality of life and be less dependent on Heather. After they'd finished examining me and looking over my medical history and test results, they decided there was nothing they could do, and said that my body was basically too wrecked and malnourished to rehabilitate at all, and all that could be done was to control the pain as well as possible with drugs. That gave me another stark reality check -- although I know rationally what a mess I have made of my body, to be told that there is literally nothing that could be done felt like a slap in the face.
I had to forego the breast lump removal operation as my health has been too poor to withstand surgery. On the positive side, though, in the six or seven months since I stopped the drug that caused the lump, it has shrunk somewhat and become less intensely painful, and given that it's benign I guess I'll just have to live with it. It seems unlikely that my health will improve enough for non-essential surgery to be advisable.
My health has continued to be poor, and I've had a series of episodes of heart trouble that nearly proved fatal. But I continue to surprise the doctors by staying alive.
I managed to keep my weight stable for a few weeks, then at the end of May went back into heavy restriction. I always seem to do this around this time of year -- yet again it seems to be past hurts haunting me, plus a strong contribution from the rejection and abuse that I constantly seem to be getting from some parts of the medical profession. I'm now at my lowest weight since I came off the tube last year, and still dropping. At the present rate, I'll probably get back to my pre-tube-feeding weight towards the end of July, which may have serious consequences for me -- I know perfectly well that I was at death's door when I was hospitalised and started the last episode of tube-feeding in May 1999. I know that between the emotional struggles and the continuing deterioration of my digestive system, it's going to be very nearly impossible to increase my intake of feed above its present value of just a few hundred calories daily. But I am trying very hard not to let it go lower than it already is; I know that outright starvation is much more harmful, and I'm anxious to avoid a repeat of the six hospitalisations in rapid succession that I experienced after last summer's starvation episode.
As always, all these problems are taking their toll on Heather, to whom it falls to help me when the doctors will not. When my heart malfunctions, it's Heather who has to monitor me, and if necessary, resuscitate me, because the hospital will not. Heather suffers when I am too weak and in too much pain to get out of bed. She shares my distress when we cannot get the pain-control drugs that I need, and lifts me up when I collapse. Caring for me 24/7 isn't easy for her: like me, she suffers from depression, and our circumstances make it worse. The constant fear of losing me has done untold damage to our relationship, and this in turn reinforces my feelings of guilt and self-hatred. But unlike the doctors, Heather understands that I don't choose to be like this, that even after all I've been through the anorexia still has an unbreakable grip on me, and that I am doing all I can to try to stay alive.
I have finally made some progress with the treatment for my pain, although matters had to come to a head first.
I made a number of suggestions to try to break the deadlock between my GP, who insisted that I should be started on methadone as an in-patient, and the hospital, who insisted it should be done in the community. Even with the offer of a full indemnity, meaning that they would not be liable for any adverse effects of the pain control medication, each side insisted on trying to "pass the buck" to the other. Eventually, events overtook us and I suffered another crush fracture of a vertebra due to osteoporosis, which left me completely immobile and in considerable pain. When my GP was called, she not only refused to give me painkillers for this condition, but refused to visit me at all even though I was immobilised. This led to us initiating a complaint of negligence against my GP, and while doing this we additionally cited our complaint against both the GP and the hospital for refusing me the methadone treatment which the pain control consultant had recommended.
Although the complaint is still in progress, this action did get things moving again. I now have a new GP, who is much more helpful than his predecessor. He has referred me urgently to the MacMillan centre in Bristol, which specialises in palliative care, and the consultant there is planning to initiate treatment, probably with morphine or diamorphine, as soon as possible. In the meantime, my new GP is allowing me to take unlimited quantities of dihydrocodeine. This means that I have a moderate degree of pain control in the interim, and have been able to stop using illicit drugs. This comes as a great relief both to me and to Heather -- we are finally able to stop worrying about having to obtain drugs to control my pain, and we can look forward to a future in which I hopefully have much better pain control and better quality of life thanks to the specialist clinic.
Heather had been very stressed by all the problems of my illness and its consequences, and has been taking a much-needed break in the USA for a few weeks. Although I know she needs her holiday and I'm happy that she's getting one, I miss her terribly and can't wait for her to come back. I know she is missing me too -- we talk almost every day. I think the break will actually do our relationship a lot of good, as it's given Heather a chance to de-stress and it's given both of us a chance to remind ourselves how much we care about each other, which is the sort of thing that can all too easily become overlooked in among the day-to-day problems that we have to deal with.
I managed to get myself out of my last anorexic relapse sometime in July and even managed to regain a few pounds -- which, as usual, proved to be a mixed blessing. Good, because my health undoubtedly improved; bad, because my emotional state always suffers if I gain even a small amount of weight. I managed to keep the gained weight on until Heather left for her holiday, but since then my feeding has slipped a bit and my weight is dropping again now.
I am now helping to run EDSHED, a new local support group for people with eating disorders and their loved ones. My personal web site has become part of EDSHED's, and I am also acting as the facilitator for group meetings since I have experience both as a counsellor and as a support group organiser. I am finding this very demanding, due to my poor health, but also very rewarding as it allows me to make an unequivocally positive contribution to the lives of other sufferers.
I finally got the result of the brain scan that the neurologist ordered a while back, and it's bad news. As well as the generalised brain damage (multifocal demyelination) that was found on my first brain scan three years ago, I now have several frontal lobe lesions, which the neurologist says have resulted from my continuing anorexia.
Heather had already noticed, over the last two to three years, a gradual deterioration in my speech. Other friends have noticed it too, and I've been aware of it myself as I find it frustrating. I have gradually started to "trip over my words" when speaking. I hesitate, backtrack and repeat words, and have developed a kind of stutter. Very irritating, as I have previously always been a very articulate speaker. In the last year especially, it has become very noticeable. Now that I know I have frontal lobe lesions, this is entirely explained -- it's a classic symptom.
As well as deterioration of speech, frontal lobe lesions frequently lead to personality changes, intellectual impairment, incontinence and hemiparesis (partial paralysis). It is inevitable that my brain will continue to deteriorate, as my nutritional state remains poor. I'm really apprehensive about likely future deterioration, and I'm feeling very depressed about the damage so far. I already had cognitive and memory impairment as well as frequent myoclonic events (involuntary jerking of muscles), and things are just slowly getting worse.
I've been far more depressed and upset over the damage to my intellect than I have over all the other damage I've suffered over the years. The thought of losing my mental lucidity is, to me, far more frightening than knowing that I'm terminally ill. I feel I need to remind everyone of the provision in my living will that says I don't want to be kept alive if I lose my mental competence. It seems painfully ironic that I have survived all this time, despite my consultant telling me I had only six months to live two years ago, only to experience my brain slowly falling to pieces instead.
On a brighter note, EDSHED is going well after three meetings and I'm getting very positive feedback from people who have joined the group. Additionally, the EDSHED web site is now being used as a teaching resource by at least three higher education programs worldwide. Various group members are working on publicising the group further, and fund-raising.