Hi everyone.
Firstly, may we say a huge thank you for visiting this blog. We truly appreciate your interest!
Our aim and intention is to periodically discuss issues related to life with M.E. and all that brings.
We thought our first blog should really explain who we are, and how we came to be able to talk about M.E.
(Please note there is a topic reques/suggestiont tab where we would love for you to request future blog topics)
Those of you here, will be very familiar with HFME. so you will know all about the most wonderful lady who created the site and who, even given her fragile health, still works tirelessly on everything posted on its site
However, in case you are new to her story, here it is.
(Please note, a there is an 'about us' tab where this information will always be easily available.)
Hi Jodi. Before you tell your story, may I say what an honour it is to converse with you here, and also say a huge thank you from all your HFME'ers for all the hard work you do on your site!
Jodi/HBIRD; In March 1995 at the age of 19, I went from being very healthy and happy one day to having problems standing upright for more than a few minutes at a time, the next.
I also suddenly had severe problems sleeping, thinking and remembering, speaking and understanding speech, eating many foods that I previously tolerated perfectly well, coping with even low levels of noise and light and vibration, coping with warm weather, sitting, with my heart and blood pressure, with any type of physical or cognitive activity causing severe relapse unless within very strict limits as well as memory loss, facial agnosia, learning difficulties, severe pain, alcohol intolerance, blackouts and seizures, intense unusual headaches, burning eyes and ear pain, rashes (and other skin problems), severe nausea and vertigo, total loss of balance when I closed my eyes or the room was dark, muscle weakness and paralysis, and so on.
I suddenly had over 60 individual symptoms, and could only do 40% or less of my pre-illness activities. I had a textbook case of M.E. although I didn’t learn that until almost a decade later.
Living through an acute onset of something like M.E. is a bit like one day waking up and suddenly everyone around you is speaking another language and looking at you strangely for not being able to understand what is being said. At first, not only is it very hard to just accept, but also to really believe it is happening, and that it won't just go away as suddenly as it came. It's all just such a big shock.
Thanks to inappropriate medical care and advice, I, as with many other M.E. patients, soon struggled to do even 5% of the activities I had pre-illness. I was made housebound and 99% bedbound, and have remained so for the last 10 years. My heart-rate skyrockets and my blood pressure drops dramatically after just a few minutes of standing or other overexerting activity. It feels like a heart attack in every organ, and as if my heart is about to explode, or just stop. (The highest heart-rate measurement I've had is 170 bpm and the lowest blood pressure measurement is 79/59 - both were taken at times when I was only moderately ill, relatively speaking, nowhere near my most severe state. Scary.)
I have spent most of the last decade, alone and in pain in a dark quiet room, coping with many different and hideous symptoms. I accept that some people get ill, and that I am at risk of this as much as anyone. What is hard to take is that, like so many M.E. patients, my reaching such a severe disability level and losing so much of my life was completely unnecessary and would very likely not have happened had I had even the most basic appropriate support in the beginning.
Unfortunately I was told to keep doing as much as I possibly could, and also to do as much exercise as possible too, when I was first ill. It was the worst possible advice I could have been given. The greatest factor governing recovery or remission of M.E. is adequate rest in the early stages of the illness. Avoiding overexertion in the early stages is VITAL. Yet very few sites which claim to be about M.E. make this fact clear – it is maddening! M.E. is just not the same thing as ‘CFS’ or ‘ME/CFS.’
I started my ‘Hummingbirds’ Guide to M.E.’ site in around 2004 and in 2009 I decided to try and use my ‘good’ half an hour a day (on average) to try and get the facts about M.E. (including the impossible to overstate importance of avoiding overexertion) to a much wider audience and so the ‘Hummingbirds’ Foundation for M.E.’ (HFME) was founded, with the help of some like-minded fellow M.E. patients.
M.E. is at least as disabling as any of the other very serious diseases (such as M.S.) and the extremely high level of suffering and isolation it causes can last for many years or decades at a time. Yet M.E. patients get the least amount of support and compassion and such high levels of abuse and outright ridicule. Some of us have some family and/or friends on board, some have welfare, some have basic medical care (although almost none have the same level of care the average M.S. patient has). But most don't have all or even most of these things and when they do they have often taken many years to get and are very hard won. Real M.E. advocacy is very much needed right now!
[Please, if you are newly diagnosed with M.E. you must not overexert yourself, you may be permanently and irreversibly damaging your body and risking your M.E. becoming very much more severe or progressive. Getting that message out is one of the main reasons I set up AHG and HFME. NOBODY should have to live with long-term severe M.E. if it is at all avoidable. It is a living hell you wouldn't wish on your worst enemy. Around 25 - 30% of people with M.E. have severe M.E. - many of them also because of inappropriate advice to exercise. There have even been exercise related deaths. For more information see the HFME site.]
In the last few years my luck has really improved a bit I’m happy to report! My condition is now, thanks to careful management and learning a lot about healing and cutting-edge holistic medicine, very slowly improving. I’m still housebound but I am probably only 97% bedbound at the moment and have been able to start doing a little bit of cooking recently and a little bit more of the things I could do before such as computer work. I also now have a very supportive immediate family and friends. I wish every M.E. sufferer could be so lucky. I'm still desperate for a lot more improvement of course: and for that improvement to happen immediately! Life is still very difficult, but I hope the future will bring better health, at least the improvement to 30% or so that would give me at least some real quality of life.
I’ve also just published my first book on M.E. – Caring for the M.E. Patient. I still can’t quite believe I was lucky enough to have the world’s most experienced and knowledgeable M.E. expert, Dr Byron Hyde, write the forward to it! It has all been so exciting and feels a bit like a dream sometimes. I’m working now on a second book too and also have several others planned, using the papers I have already put up on the site.
Okay so that is about it from me!
Now I have finally written my intro piece for the new blog, I’m looking forward very much to writing some new and interesting things about illness, life and M.E. with the lovely Alison – I hope you enjoy reading them!
Links
To read about the new M.E. book, or buy a copy, click here. To look at some of my hummingbird artworks, click here. To read about the idea behind the ‘hummingbird’ and M.E., click here. To read more about my M.E. story and experiences and so on, please see:
Alison/TINK; Wonderfully told ma'am. It is so sad that so many of us have had inappropriate treatment, most likely leading to more severe health. As you can see, that part of my tale is all too familiar....
My I just precede my story with saying how my heart goes out to all of the readers here…. not only because I have been or am where many of you who are M.E. sufferers are or may have been, but because you are a human being who struggle. For you to understand my empathy (rather than simply sympathy) with you I’m going to have to explain who I am and my story (well some of it ;) )
So my name is Alison Bell. I live in the UK. I am 28. I have had M.E. all my life looking back on it but I was diagnosed after a long time at about 12 years old I think.
I had stomach pain right from my first memories. We tried time after time with a variety doctors. We were almost every time told 'All little girls have stomach ache'. After a while, i saw a psychologist who said I was hiding behind my glasses. That was her answer.
I always had time off school, usually adding to one week per month, with another week or two here or there.
When i was nine, I had Glandular Fever. I lost 2 and a half stone in about 9 days. Also had 13 courses of antibiotics in a 12 month space due to Bronchitis, Pleurisy and other lung infections. During 6 months that time, I was sofa-ridden, only able to get to the toilet or to go back to bed. After 8 months i returned to school.
But this had made my general health a bit worse than before.
Then came secondary school. Still with plenty of time off.
I became bed ridden at 15. I was mistreated and sent to Psychiatrists and Psychologists, had my M.E. ignored by a so called M.E. specialist because she wrongly assumed I had Anorexia.
I, now with a different so called M.E. specialist, was pushed and thrusted through physio. And told the answer to my ill health, was simply, if I was a type ‘A’ person I need to be a type ‘B’ person, and if I was a type ‘B’ person, I needed to become a type ‘A’ person. That was his specialised answer for my M.E.
After a spell of tube feeding in hospital, I became improved enough to enter the world again, but within 6 months was bedridden again. And worse than ever.
And have pretty much been here ever since.
My muma was my carer all my life (I as well as M.E. have 10 different stomach illnesses, hypermobility (an illness that means the mechanisms that hold your joints in place don't work so you get lots of dislocations and subloxations) psoriasis, and now also have osteoporosis toboot. She was not only my carer, but the only person that could look after me as I was incapable of coping with everything that comes with being in the same room with another human being (ie their noise, even just their breathing, their movements etc etc). She would bring me my 70 odd average tablets a day, my water and my food, help me clean with babywipes as I couldn’t cope with washes, let alone showers or baths. But she was more than my carer. She was my friend, and the smile in my heart. She died when I was just 19.
My father who I didn’t get along with, had to become my carer simply as he lived in the same house as I do.
Long time later, a huge amount of trials and tribulations, and here I am. And I am glad to say, over this last two or so years things are slightly easier. I can still only cope with a visitor when on Pethadine, am still housebound, still either laying in bed or propped up in a special chair with pillows, etc. (But I can now sit up at times, where as I couldn’t until then) I can now at times use the net, (inc facebook, twitter email etc) but only cope with these contacts again when on Pethadine. I can write a little, which I was unable to do for a long time, till then it was just an odd signature when I had to on medical doc’s etc. I can now type a little etc. but the biggest thing I can do now, is think a little.
People without M.E. can wonder how a person can not think. But a brain illness will do that to you I guess!!
When I was seriously ill enough to be at deaths door, I remember watching tv (tv is the only thing I can do in pretty much any state, if it is using earphones (to separate the outside world noise to that from the tv, and with not only the colour turned down, but the contrast too) (note I watch films mostly as you know what to expect from a film whereas random tv is unpredictable, but ones that I regularly watch and know what I’ll be getting, I record to watch at leisure, and i find watching tv easier than listening to audiobooks as it needs less concentration, tho I listen to audiobooks before I go to bed. Note I have lots of online sites I can recommend to download films to watch for free)... sorry, back to point, I remember watching tv when literally almost at deaths door, and seeing an interview with an M.E. sufferer. He said he had to rest for a week before and a week after to be able to do said interview and that he was seriously ill with it. I also remember seeing another interview with an M.E. sufferer who said she used to have it seriously but had gotten well enough to do things In the world again. I remember a flicker of a thought that sounded like ‘if you ever had it as badly as I have, you would never have gotten better’. Yet here I am. I will never be well. That’s pretty much for sure. And I don’t hold much thought that I'll enter the world much again. But right now, like this, my world is somehow, manageable.
I am in my room on my own enough enough to be peaceful, which Is a great deal to do with how I cope. But I get enough contact time with people on my regimented Pethadine nights (every 4 or 5 days, so usually a Monday, fri, wed, and repeat) to not become a recluse.
So in my little world here I am. Able to cope, given the right circumstances (being solitude, peace and quiet etc.
Since writing all of the above earlier this year when Jodi and I first spoke about creating this blog, I have had a severe relapse. I have lost almost all of the abilities that I had gruelingly worked for. However, I am proud of what I achieved and know it was most worthwhile and will stand me in good stead.
I also believe things happen for a reason and that maybe, just maybe, my relapse has happened so that I will do better work in this blog and the field of M.E. advocacy.
If there is anything I can do, I AM HERE. These are no words for comfort, or a pity gesture, nor merely meant when written. As long as I am here (which with having M.E. is never certain, not that any life is) I will be here for you, or any of the people commenting on and/or reading this thread.
Please note however, any of medical M.E. bits I will forward on to lady Jodi as her knowledge precedes anyones!
So here are my contact details, for you, or even any of your family/friends, be it m.e. sufferer, relative of a sufferer, or simply someone trying to learn.
Fax 02083315042 (International 00442083315042), (headed PRIVATE FOR MISS A L BELL as my father passes them to me from downstairs and some are medical docs so this will make sure he wont read yours)
So, now that you all know who we are and how we have come to be able to talk about life with M.E., we hope that you will return to read and comment on our discussions on this blog in the future.
We hope that reading this hasn't been too taxing for you (Many apologies for its length) and we hope to get to know you all in time.
Best Wishes, Much love and Blessings
The Tinkerbelle And Hummingbird M.E. Blog
