Internet for friends
Here below the text from my letter as it has been printed in the Dutch ME/CVS-magazine. As you can see it is much shorter and that's why I also put my original letter on the previous page.
Ingeborg Geuyen is 33 years old and already has had symptoms for many years. Probably the ME (and FM) had started in her youth.
It is very likely the ME (and FM) started in her youth. She is completely bedridden but maintains contact with 'the outside world' through the internet and her own website.
“I was about 5 or 6 years old as 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 her symptoms worsened but only in May 1998 she got the diagnosis ‘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). A good month later I had become permanently fully bedridden and till today I still am 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.” An intense illness period was followed by hospital admittance. There she got released so she (according the specialists) could die at home quietly.
“After those 3 months of coma-like state in 1999 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 (3 hours of household care and 2.5 hours of personal care a week), 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 from bed-washes to spoon-feeding, turning me on my other side or moving a leg or an arm etc.
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!). Very recently however, I got a voice amplifier from my health insurance so I can make a phone call again sometimes.”
A few times she experienced an improvement in her health for a few days and once she improved for a few months but every improvement may be many months or years apart. All symptoms remain, but they are a bit less severe so she is able to sit a bit once a while in her wheelchair or sometimes even walk to the toilet.
Since 2001 she gets PGB, the first 3 and a half years 22 hours PGB a week (15 hours for household care and 7 hours for personal care). But in December 2003 as she was retested according to PGB's New Stile (and all the cut-backs from the government) it is minimised to both 7 to 9.9 hours a week. “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.”
“At the moment I am fighting
RIO (and CBT/GET) even more, because my relation has broken up recently and now I am all alone. Despite being completely bedridden, RIO thinks I can live on my own with just 1.48 hours of personal care a day (12.9 hours a week). I don't know how I will survive without the things that make my very difficult existence only just bearable…”
Working at the computer
Ingeborg lives in a more understanding and accommodating community and so her house has been adapted for her and her disabilities. For example (among other things) 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, a bath lift, an intercom with electric door opener (upstairs and downstairs).
Along with all the physical effects Ingeborg also faces a growing isolation socially. Friends she doesn't has anymore and also her family –except for her parents- let her down. “I never hear from anyone else anymore, not even those two times I was dying from my illnesses.”
Her 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. 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.”
And the future? “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'”
Despite everything Ingeborg still manages to find some happiness through noticing the small things in life which she can still enjoy like her “cats, getting an e-mail or a card, the sun and the flowers (when my eyes can handle the light anyway) and that through the Internet I have met some really sweet friends (fellow sufferers) from even Australia!”
You can find Ingeborg's website at www.borgofspace.com