Newest Review: ... was always having blood tests and things nothing was the matter usually. Then when I was 25 my Dad passed away. The stress really did tak... more
Our lives with M.E!
ME/Chronic Fatigue Syndrome
Member Name: xxfoxyredxx
ME/Chronic Fatigue Syndrome
Advantages: What good about M.E?
Disadvantages: Everything, but you may be able to help yourself!
For the past 22 years I have suffered with M.E/Chronic Fatigue. If you don't mind I'll refer to it as M.E simply cos its easier to lol.
The first time I felt something very wrong and that I was exhausted to the point of the extreme was when I was 15 years old. I'd had a very bad bout of flu and was recovering rather well. I'd been off school, was ready to go back but then one day I was walking up my 14 shallow steps of my home to go upstairs to speak to my Mother who was sitting on the toilet with the door wide open not thinking anyone was about. I remember saying how rude and laughing and then grabbing hold of the banister and saying I had to go to bed as I was so tired and dragging myself there to which I slept for hours upon hours. I always think back to how I felt then and people thinking I was lazy and putting it on and since then I have really suffered, up and down with my energy levels.
Of course M.E can come and go within us. It can ease up, get worse and not only do we not know really what causes it alot of Drs think its caused my Glandular fever or a viral infection of some kind. There is no definitive cure, no magic pill nothing to cure M.E, that's the bad news.....
So this illness currently stands at affecting 250.000 people in the UK alone. It can be referred to as:
Myalgic Encephalopathy or "ME" (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis).
Chronic Fatigue Syndrome or "CFS".
Post-Viral Fatigue Syndrome or "PVFS".
Chronic Fatigue Immune Dysfunction Syndrome or "CFIDS".
What It Usually Entails:
It really does affect people differently and you can have one or more symptom of it so getting a diagnosis can be rather difficult in the first place. It can consist of severe/debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and bad concentration.
My Experience With M.E:
Not knowing it was M.E when I was 15 years old I was eventually diagnosed by my GP when I was around 20. Nothing much was said about it really, it was an off the cuff remark that I had Chronic Fatigue and I was left to it. However I went through ups and downs of tiredness to days where I was able to manage in life to days when I just stayed in bed, missing college and the likes through being so very tired. Again people around me thought I was swinging the lead but some days I just slept straight through for 16 hours or more and still felt tired after it. I always suffered headaches that not alot of medication would touch (I was diagnosed then with migraines) and my muscles would ache alot, particularly my arms when I was younger.
M.E though, although slowing me down a lot in my youth, because I didn't understand it I just lived with it I was always getting colds and flu's, just when I was beginning to feel a bit stronger I was knocked back by something else. I was always having blood tests and things nothing was the matter usually.
Then when I was 25 my Dad passed away. The stress really did take it all out of me as you can appreciate I'm sure. I was exhausted mentally and physically, got colds that I couldn't shake and was put on antidepressants in the end. Sure I was depressed..... I loved my Dad and he had died but I knew the tiredness wasn't just that and my bones and back were beginning to really hurt on a regular basis from then on.
I took the Prozac, I got more tired but again I just slept alot, took painkillers and curbed my hectic lifestyle I had always tried against the odds anyway to maintain that but simply couldn't anymore....I was so tired all the time.
Since that time back then I have had ups and downs with it but the time I feel well nowadays has lessened and I'm exhausted then ever. Nowadays I'm always suffering with unexplained colds, go near someone with flu or a virus and I know I'll catch it. I sleep 16 hours a day, sometimes more and just getting up from my sofa to make a drink can take every effort I have within me and my back and legs hurt all the time. I have a swollen gland in my neck, sore throat everyday and almost a constant headache. If I go out its short distances and actually as I am writing this I'm exhausted, in bed and after will probably have a nap after posting this lol. My concentration is awful and always after I have been up and about 4-5 hours I'm ready to go bed again as I feel like I have done a full days work and can no longer concentrate on even watching tv!
So like I say there is no definitive reason for M.E. It can effect anyone at all and although blood tests can be carried out to see what state your sugar and electrolytes are in (which can show problems that may contribute to M.E) even then that isn't proof. My blood tests were fine yet I still have it lol!
With M.E though people as a rule don't understand it. You can get labelled as lazy which if you genuinely have it can be really frustrating and demoralising in itself. I have got very angry with pushy people in the past saying I'm depressed, saying come on lets go clubbing when inside I feel like curling up and sleeping and half the time when I've slept I could swear I haven't and that I've been punched under my eyeballs and feel as rought as anything!
So feeling as bad as I do and at times that life isn't worth living I decided enough is finally enough. You have to take control and one of the things for me that was important was to speak to someone, to get a proper diagnoses of the condition from someone who specialises in M.E and I had an appointment at one of the only M.E centres in the UK (a place that specialises in the illness) in Bristol to which I had to travel quite far to get to, but it was so worth it. I met the head of the department who was absolutely amazing and really listened. We talked about me, my past, my life and although I'm complicated with an eating disorder and with a thyroid condition which both can be exhausting illnesses anyway she still diagnosed me as I was ill with it as I had it from such a young age.
Being diagnosed properly for me was a bittersweet experience though. I mean I already knew but it was a bit like oh great but there's no cure so that in itself was worrying to me and I didn't like the label!
However once diagnosed there is so much support and so many avenues to explore its unreal and this is what has driven me to write this review. To try to positively say to anyone with M.E don't give up...please I almost did!
The biggest thing that helped me to understand what M.E is, is this explanation from my specialist. Many years ago a burglar broke into my body and left a virus behind. My burglar alarm ever since hasn't been switched off properly and my immune system is working too well trying to protect me, hence me wanting to sleep so much. What we have to do as sufferers is to quieten or turn off that alarm....but how? A tablet even antidepressants are not going to fix this right?
Sounds a bizarre analogy but anyone with M.E can probably understand what is being said here! I did anyway!
Me, I have been taken on by an M.E clinic. Its like one to one therapy with lots of paperwork and questionnaires of how we are doing weekly so we can chart our ups and downs with the illness. I personally have started to keep an M.E diary I take with me rating my tiredness that day, what I've eaten how much sleep I have had, exercise and so on. I find this helpful to see what could be contributing to it.
With no drugs about that are a miracle cure for this condition we are left with alternative remedies only really. Me, I've dabbled with them from time to time in the past but I don't know loads about them to be honest. All you can do is become your own mini doctor really. There is a fabulous book I heartily recommend that's called Foods That Harm, Foods That Heal (Readers Digest publish it) that has a rather large section on M.E but throughout the book we are told about general foods that can help to harm or heal us and energy boost and so and I refer to this often. I'm not ruled by it though! lol.
I also own a book by Bach called 27 flower remedies which of course is about mixing your own flower remedies up to help calm you, energise you and so on and these are readily available in places like Boots and Amazon. Before sipping these little drinks or popping the solution onto the tongue I was drinking too much caffeine and living off energy drinks...they really need to go fellow sufferers trust me on that one lol!
There are so many homeopathic treatments around and about and again this though this can be really expensive if your buying them yourself and a very hit and miss process indeed. Alot of Doctors still wont pop them on a prescription for you, some will though, good if like me and that you are exempt from paying for them (I have a thyroid condition so never have to pay any charges at all ever lol) but one small jar of Bach flower remedy (yes one) is about seven pound a pop otherwise!
Did you know though that scattered throughout the country there are Homeopathic hospitals though? They do give out free treatment though you do need to go through your Doctor to access this service. I was determined to get to go here as, as I have kept saying there is no conventional medicine to help me otherwise. Not only am I tired and flu like, I have pains in my neck, shoulders, back and legs and so on. I have lack of self esteem at times and feel worthless. I can't focus, I cant be bothered with anything....and I don't have money to throw about trying to get a concoction right, or the energy to run around the shops for that matter either to get them lol.
I told my Doctor it was my right to see people who could help me. She went through my syptoms, referred me and I was in the hospital chatting to a Dr within days and left armed with products to try out.
I have Arnica for my back and general pains. I have Chlorella (Green Algae) to strengthen my muscles, Rescue remedy for when I feel panicked about my situation and a few different viles of flower remedies too. I take Magnesium and I avoid yeast laden foods as that is known in some cases to affect M.E sufferers which is referred to as anti Candida control also watching sugar levels and general diet. Light exercise and rest throughout the day is prescribed though no over exertion should be according to my specialists so I listen to my own body in this area!
Other treatments are also available of course. Some Doctors are totally dismissive, the M.E Association and people who work within it are not of course and although I know a little about these treatments I have not undergone them yet but may well do in the future. There is light therapy, acupuncture and again once diagnosed you are entitled to them on the NHS, they just don't want to give them away to anyone lol!
My therapy has helped me to understand that the only person who can put this condition right is me and that positively is a huge help. It isn't a cure though this is a very real illness but there is so much help available, so much information in the way of books, dvds and centres and self help groups. The people at the M.E society are amazing to just have a chat with and ask questions (contact them on 0844 576 5326) and they have a website www.meassociation.org.uk that has loads of information, updated often on it with information about self help groups in your area too.
The main thing is don't suffer this debilitating illness alone cos you really don't have to. Get it diagnosed and take action against it, its your enemy not your friend. I'm not 100% I still have plenty of a way to go and have suffered years with it now but I will get there in the end I'm so sure of that!!
Summary: Don't suffer, wage war against it!