Well, this is my first post… on my first blog… it is also my first day of taking D-Ribose…
A friend of mine bought me a book called “From Fatigued to Fantastic” by Dr Teitlebaum and she has been taking it for 3 weeks so far (see her blog: http://chronicallyme.wordpress.com/. I had heard of D-Ribose before, in Dr Sarah Myhill’s CFS/ME book: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue and thought what do i have to lose?
I have been so full of despair in recent weeks but after reading the book i do feel a sense of Hope returning, and am pleased to be doing something constructive… although it is mixed with the feeling that i will not be able to fully try everything in the book (which is american) as a whole section is about hormones and taking hormonal supplements and getting certain tests done, which i doubt i can get via the NHS, and i don’t want to mess about with that kind of stuff unsupervised… I am hopefully going to see a hormone specialist soon as I have noticed quite dramatic fluctuations in my symptoms based on my monthly cycle recently and my doc did not know what to do about it, so maybe i can talk to the specialist about the book and it’s contents then… finger’s crossed they are open minded.
I have ordered lots of expensive nutritional supplements, including the D-ribose so that is a good start. I will be happy to get even a small improvement in quality of life as recently my life has become very small & to get further than ten minutes from my house by foot or car is a rare and amazing event. I have been really struggling to get through each day. Things have seemed to be just getting slowly worse and worse and i would really like to see a change in direction!
I feel i have been living without much Hope recently and i am unsure if that has been good for me. I can’t help but have a bit of an antagonistic relationship with hope these days: it seems at odds with Acceptance somehow.
Up until i became too ill to work again i felt i was on a very slow path to recovery as i had never properly relapsed like others seemed to; once i did i had to face the fact that after having this illness for 7 years there was a chance that i would always have it.
It seems obvious, but up until this point (when i asked my specialist straight out how many people who had been ill this long got fully better again and he said something along the lines of “not many – you will probably always be affected by it but may improve a bit”) all medical and other people had said to me that “most people get better”. In fact only about 10% of people with ME totally recover i read recently, many others improve to a good level of functionning but not to previous levels of health and about 20% stay seriously disabled, or even decline in health. (this is just from memory so don’t quote me!).
Why do medical professionals continuously say i will get better? Do they think i need to believe that and need to keep Hope? (This is especially galling when they only offer “Lifestyle Management” and don’t seem open to even trying certain tests or treatments which could help). After 9 years some of them still say it. It is the easy thing to say, but i feel it is also important to accept my life for what it is and not be waiting to be well to live it. I try to live it as well as i can within my limits, as i don’t know how i will be tomorrow or next year. Things could get (and have got) worse!
So, i had never given up on Hope completely as i want to be well with all by heart and soul, but maybe my hopes are smaller now. I just want to be able to get out of the house a bit more, be able to socialise more, be able to cope with short drives and be able to visit friends and family on the train occasionally… These things when i read them don’t seem small at all but they would be nice, wouldn’t they?
Dr T – i hope you know what you are talking about… you got my hopes up and i don’t need them dashed again…
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May 12, 2008 at 2:38 pm
rachelcreative
It was Rockycha who inspired some hope of improvement for me after her 40% increase in ability in 6 months.
On the other hand I hear the voices of people on forums I visit saying how much money they have wasted over the years on “wonder” suppliments.
Why does it have to be so blumin’ complicated all the time!?
I am kind of grateful that your specialist was so bluntly honest. I have read similar things on the web and through my membership of Action for ME last year (not renewed this year) about recovery rates.
I also read a great article which argued that if all those people who keep quoting the “most people recover within 2 years” stuff just stopped peddling this stuff we’d all be a lot better of. For instance – the benefits system would be easier because everyone would understand that FULL recovery to a FULL life is not achieved in most cases.
All the same it scares me to think I could be ill forever more. Hmmm.
Tricky stuff.
Thanks for writing about it all though
)
May 12, 2008 at 3:48 pm
ashysheela
Forever is a long time… one thing i have learnt is that things are constantly changing – (my main symptoms are different now than they were in the beginning)that allows for change for the better, in theory at least!!
I suppose we should be pleased things are not set in stone regarding the future prognosis… but it is one of the hardest things to deal with, one day can be so totally different to the last, which leaves you trying hard to grasp any certainty at all.
I have been criticised by psychologist-types for talking in the past tense about my illness instead of saying “i am ill” “it is really bad now” but all i can say with certainty is what yesterday was like…
I am an AfME member for the first time this year… but after all i have heard about them i won’t be renewing either… just wanted to know what was happening with research etc and thought getting their magazine would be useful.
July 1, 2008 at 4:48 pm
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April 13, 2009 at 2:35 pm
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