My LifeStory The Dutch ME/CVS-organisation had put an add for people with severe ME to tell their story in MEdium (the magazine from the Dutch ME/CVS-organisation). I responded to this and sent the letter below. Shortly after I got an email that they wanted to print my story in their magazine, but it had to be shortened. Together we put up a satisfied piece which will be printed in the next magazine which will be delivered just before Christmas. You can read this piece on the next page (of course translated into English), but I also wanted to give you the
to read my original letter.(With thanks to Jodi for helping translate this letter.)
My name is Ingeborg and I am 33 years old and I have Myalgic Encephalomyelitis, Fibromyalgia and Multiple Chemical Sensitivity (ME, FM and MCS).
The ME (and FM) probably started when I was about 5 or 6 years old and I came down with a flu-like illness with symptoms including a fever and vomiting.
I have remained ill since then, but because I was still so young I didn't know for many years that I was ill because I thought it was normal to feel that way. In the beginning my illness also wasn't as severe as it is now so I was able to finish my schooling (although I did study at a lower level because of the illness and symptoms such as concentration problems). After that I did a year of secretarial training and then I went to work.
In 1994 I began to get symptoms like fainting, difficulties understanding speech, inflammation of my throat etc. However all this was said to be depression, but after treatment at the psychiatric ward I still had exactly the same complaints except that now I was even more exhausted and ill from all the ‘treatments', but still I kept pushing myself and I somehow went back to work.
At the end of 1997 I finally stopped working after I had fallen asleep behind the wheel of my car and I had several times almost hit another car or a tree.
In May 1998 I got the diagnosis of 'progressive ME and FM' from Professor Pop in Maastricht (The Netherlands). By this time I had to use a wheelchair and was bedridden most of the day (about 20-22 hours a day and I had to for example go to the toilet with the wheelchair). At the beginning of May I had my first appointment with him, 3 weeks later I had to come back for the diagnosis. For those 3 weeks I have did nothing more than lie flat on my back to recovering from my first visit to him. A good month after that 2nd appointment I realised that I had become permanently fully bedridden and that this was not just because of a relapse. (In fact today I am still 100% bedridden). In the beginning I thought that it couldn't get worse than that, but I was soon to discover that unfortunately it certainly could as I soon started to get symptoms like paralysis, epileptic seizures, muscle spasms (at least 30 in 1 hour), I began to have a lot of trouble maintaining full consciousness and at a certain point I even started to have trouble maintaining breathing.
1999 was the first time I lay dying from the ME; I was in some kind of coma, I couldn't move at all for months, I had totally no voice volume for over a year, I couldn't swallow anymore and so I also couldn't eat. Previously I had had periods of not being able to swallow, but this time it took 3 weeks for this symptom to ease and so I didn't eat for 3 weeks. I physically couldn't. My own GP was on a holiday, so the replacement GP came. His reaction was 'you can choose: either you eat or you die'. As if it was my choice!! My friend threw him outside. When my own GP was back from the holidays I was urgently admitted, but they couldn't really do anything for me in the hospital. After 2 weeks they sent me home to die there quietly, because as the specialist said 'in the hospital it is not quiet and you need rest'. Thankfully after about 3 months I slowly started to feel a bit better; I was able to move a bit again, I was again somewhat conscious and I was able to drink a bit of liquid food again. I still however, could only lay flat in bed for 24 hours a day and still had complaints (mostly on a daily basis) like paralysis, severe pain, epileptic seizures, problems maintaining breathing and so on.
When I came out of the hospital I was finally given some professional care at my home, until that point it had been denied because their perception is that I 'am only tired'. If only!
Up until then it had been my friend that took care of me, doing things such as; bed-washes, spoon-feeding, putting the straw in my mouth so I could drink a bit, installing the urifem between my legs and pushing my bladder so I could urinate while lying flat in bed, turning me on my other side or moving a leg or an arm etc.
I was granted 3 hours of household care and 2.5 hours of personal care a week, which meant that weekdays I got bed-washes. What a misery it was! They just didn't believe you if you said that you couldn't help because you were experiencing paralysis as part of your ME at the time. Almost daily someone new came to wash me and each time I again had to explain everything all over again to them and all this while I still hadn't any voice volume at all (I couldn't even whisper!).
(Luckily I got some voice volume back after 2 years or so, but I am still almost inaudible. Very recently however, I got a voice amplifier from my health insurance so I can make a phone call again sometimes.)
In 2002 the illness hit me severely again, again I was dying. This time we heard from a specialist via someone else who came to visit me at home. Thanks to him I am still alive and thanks to him I could begin to eat and drink somewhat, again a bit later and for the first time since 1998 I was able to sit up in bed with support a bit again. A bit later I was also able to stand (with support) for a few seconds for the first time since 1998 and after a while longer I could even walk a few steps again! A whole new world opened before me! Once in a while I got to leave my house with my regular wheelchair or my reclining power wheelchair. If I had no water I could get it myself (walking, or if I already had walked enough that day, I could get some using the wheelchair). I felt like I was cured. Of course I was still a very long way from being cured, because I could barely walk 15 meters or sit a half hour in my wheelchair (divided over the day) and for the rest of the day I was still laying flat on my back in bed. But compared with what I was able to do before I felt I had my life back and was healthy again.
Unfortunately it wasn't long before I slowly worsened until again I could only lay flat on my back in bed for 24 hours a day. At the moment I am in bed upstairs (as I have been these 2 months or so), because despite my wheelchair and stair-elevator I am not able to get myself downstairs. I am just too ill.
Since 2001 I get PGB, the first 3 and a half years I had 22 hours PGB a week (15 hours for household care and 7 hours for personal care). But in December I was retested according to PGB's New Stile (and all the cut-backs from the government) and now for household care I get class 4 and for personal care also class 4; this means 7 to 9.9 hours a week. Luckily my carer doesn't ask for much money and so I can pay her for 20 hours of care a week without having to pay any extra myself (yes, I do pay my personal contribution but with PGB you don't notice this because it already is deducted from your budget so you only get your net PGB-budget). I have had to make a complaint about RIO however, as they think, for example, that I can use Meals On Wheals or ready-made (frozen) meals when in reality, my severe MCS makes this impossible for me.
Due to my severe ME and MCS I have a lot of food allergies and more importantly: I am allergic to tap water. My food has to be washed, prepared and cooked in bottled water (which thankfully I do tolerate) and so I need to be allotted extra carer hours to accommodate this need - for someone to come in and cook for me. My body's reaction to just a few tiny sips of tap water is paralysis and I also fall into a type of coma where I cannot really react to anything happening around me - and this is just from a few sips of tap water - so of course having my food cooked in tap water is completely out of the question. Despite the extreme severity of my symptoms provoked by the tap water, RIO are unreasonably refusing to listen to my objections on this matter.
I am lucky however that I live in a more understanding and accommodating community, and so my house has been adapted for me and my disabilities. For example (among other things) I have a heightened toilet (upstairs and downstairs), 2 regular wheelchairs (1 upstairs and 1 downstairs), a reclining power chair, the bedroom upstairs is modified for wheelchair use, I have a bath lift, an intercom with electric door opener (upstairs and downstairs). The only thing I really need but don't have is a lifting device to tilt me out of bed and into the wheelchair/stair-elevator/commode-chair etc. My friend has to do this for me instead.
I am very grateful to my friend, if he wasn't there for me I would have been in a nursing home since 1998. Despite the PGB he still has much to do to care for me (and this while he also has his own health problems: epilepsy and also ME (but luckily only mild ME). I think in a way my friend has it much harder in coping with all this. He has to helplessly watch. I am too ill to think and feel much of the time. My life passes by mostly without me noticing it because I am so ill. His life however, passes by him too...but he is well enough to notice every minute of it pass by and feel its loss.
My other friends all disappeared around 1998, as did my family. Only my parents are left to help, I never hear from anyone else anymore, not even those two times I was dying from my illnesses. Not even my 2 sisters. I rarely have visitors come over, because I am too ill, and if I do it causes me a severe relapse for months afterward. Going to visit someone myself is of course completely impossible - not just because of severe ME, but also because I now also have severe MCS (which I was diagnosed with in 2002).
My days are all the same; sleep/rest, try to eat something (if I can swallow that is), watch a bit TV or a movie for distraction (don't ask me what I have seen, because I absolutely can't tell you this because of the memory deficits which are part of the ME), work a bit on my computer and listen spoken books sometimes, that's about it. All this while lying flat on my bed, I can't sit, not even to eat or to drink or with support. As a hobby I used to enjoy sports and drawing and painting. Now instead of this I do some PSP on the computer and of course I work on my own 2 websites (one about my cats and one about my life with severe ME, FM and MCS). But it is my cats that are really the only thing that keeps me going. Of course my friend and my parents do too, but I think that they would understand if I would quit this life.... My cats however wouldn't understand, they couldn't. So I keep going for them mostly. I did sign euthanasia-papers but after I survived almost dying from my illnesses in 2002 (for the second time) I let them be destroyed.
The computer is my only contact to the outside world and with fellow sufferers. So of course the computer and internet is very important to me. Through my website I express all the grief and frustrations that come with such severe illness as it stops them building up inside me. It is very cathartic. I also hope to support fellow sufferers with my website, by making it something that they will be able to relate to through their own experiences with the illness and I hope that healthy people and specialists will finally understand how sick you can get from ME and that it is definitely not a matter of just 'pushing yourself' through it. In fact, the more people with ME push themselves the sicker they get, so getting people (and especially doctors) to understand this is very important.
Physical exercise isn't possible for me now I have ME, I have tried it a couple of times with a physiotherapist at my bed, but each time it just made me so much worse. I had much worse paralysis and even developed 'clawed' deformities of my hands and feet (due to severe cramp) and so we were forced to stop. In the future I hope one day to improve enough to be able to exercise in some way again but at the moment it is out of the question. It is not that I lack motivation, it is my body that is the problem not my mind or my personality. This illness is something that I have had no say in whatsoever despite what some ignorant people might think.
It is ridiculous to think anybody would willingly choose to lay flat in bed, be washed in bed, go for months without brushing their teeth or washing their hair, to lie in bed to urinate while someone else has to put the urifem between your legs and push your bladder, without being able to scratch when you have an itch somewhere, without being able to throw the quilt off of you are covered in sweat, only being able to poo with assistance and using a commode chair or a diaper knowing that someone else will have to help clean you up afterward and wipe you like a small child....how could anyone think that I (or anyone else) could choose this humiliation? This hell. Any of it! It just makes no sense. Who would choose not being able to make it clear that you are hungry or thirsty (and often going hungry or thirsty because you cannot get these things yourself), almost suffocating in your water or your fluid porridge.... The list goes on... NOBODY would choose this! Even if somebody tried to it just wouldn't work...human nature would just rebel at a certain point and demand more out of life...something out of life... Ignorant doctors assuming ME is a matter of 'choice' obviously have no idea what they are saying. This 'theory' of theirs just does not make any sense - they need to do some REAL research into ME instead of just sticking to such silly inaccurate ideas.
I don't believe in recovery anymore, that I definitely will recover (and the statistics on recovery support this). I mean of course it would be nice if it could happen to me but I don't just presume it will any more, I don't expect it, I just hope for it. I have become very realistic. In the beginning I often 'bumped my nose' by being too optimistic straight away, about a new treatment for example. Now if I want to try something new, I just wait to see what happens instead of getting all excited before anything has even happened yet! Of course I do have hope, but I try not to let that hope build up too much, because if you do and (yet again) the new therapy doesn't do anything (or even worse, you get even sicker from it), then it is mentally just that much harder to process and accept yet another disappointment. So I just try to wait and see where a new therapy might bring me, where life might bring me - without thinking about it too much beforehand.
I don't think about the future, and I don't really think about tomorrow either. At the very most I think 'maybe/hopefully tomorrow will be better'. I just try to live through the day, through each minute and if I am fighting for a breath, I have to just try to get through each second. My future? I don't know, I would be happy if I could just improve enough that I could sit a bit again and walk a few meters like I did in 2002. At the moment I would even be happy if I could just go downstairs again so I could lay in my hospital bed with the special mattress and also be well enough to leave my house once every half year for about 5-10 minutes in my decline power chair to see my neighbourhood or to go feed some ducks in a pond nearby.
I have learned that you can't do much more than just wait and quietly hope for the best. Getting upset thinking about the future just makes me feel awful and having ME makes me physically feel awful all the time already and I don't need any more of that!
Despite everything I still manage to find some happiness through noticing the small things in life which I can still enjoy; my cats, getting an e-mail or a card, the sun and the flowers (when my eyes can handle the light anyway), listening to a thunderstorm, the sound of the rain against the blinds. I literally relapse from many noises, but I can still really enjoy a thunderstorm and rain luckily. I can't listen to music anymore, since about 1998 and so I don't know anything about all those songs, singers, boy groups, girl groups and things, but I am also not interested in that anymore. I just try to enjoy life itself, that I am still alive, that I still can enjoy my cats and my friend, that through the Internet I have met some really sweet friends (fellow sufferers) from even Australia!
Written by Ingeborg Geuyen, 2004
PS this piece has taken me months to write and when it was finally finished and ready to be sent my friend told me that he couldn't handle the situation and giving me the care that I need anymore and so he has just ended our relationship.
I am also fighting RIO again these last few months; they somehow think that I, being completely bedridden, can live on my own with just 1.48 hours of personal care a day (12,9 hours a week). But of course this is just impossible and it has meant that, for example, I am forced to poo in a diaper that may then not be changed until THE NEXT DAY when my carer comes. I NEED much more care than RIO is prepared to give me. Nobody should have to live like this.
I have applied for a Fokus-apartment, but I still don't know if I have been accepted. If I don't get approved for a Fokus-apartment and I don't get more hours of PGB-care from RIO, then I will soon deteriorate (both mentally and physically) due to the lack of physical and personal care or I will have to live with my parents - after already 15 years living on my own - and then I would lose all my equipment (like my reclining power chair etc) because their community doesn't give equipment like this to people with diseases like ME, even if you are very much in need. This would mean that I would never again be able to go to the toilet with the wheelchair on a rare 'good' day, or ever again take a bath or a shower and never ever come outside again......
So now my whole life and future wellbeing depends on RIO (and me getting more hours of care) and/or a Fokus-apartment where I can live independently with the possibility of call-up ADL-care for 24 hours a day; there are 2 demands which you must fulfil: being socially independent and needing minimal 5 hours till maximum 30 hours of ADL-care a week.
If both will not be approved I don't know how I will survive without the things that make my very difficult existence only just bearable…
Well this was my life in short, if you want you can continue to follow my story on my website (www.borgofspace.com). Finally, I'd like to wish everyone a lot of strength and power, to keep enjoying the nice things and the small things in life and to always believe in yourself.