But the saddest part of all, when I go into a doc office and run into my old colleges, or friends in the medical field or in the ER when I am sick, these people look at me like I am faking something, or making up my suffering for attention or they treat me like I am a hypochondriac, that makes me sick!! And that makes me so mad. I still can't get over that, to this day. So I have to be in so much pain or suffering so bad I can't stand it before I will go to an ER or to the doc here. OH I could go on and on about the people here but I won't, I just thing that someday, they too will get educated or know someone that has this disorder and maybe understand it.
I know there are lots of people out there with worse than myself so I try not to remember that but there are days I feel like it isn't worth it. So we can all understand your pain, your anger and disappointment with what life has done to us.
I can't get out in public as much as I used to, I have made a few friends since I came back to this area, but they all work, have families or what ever and I am pretty much home bound. When I do get out I feel better, but I really don't have many places to go. This is a small town or community so home I stay. So the PC has been a good friend to me,
I run from this disease as often as I can, I get a little energy and I fly with it. Then I have over done things and I go down for a day or two. I think we all do that in some form or fashion. But no matter, we all suffer and until these past few years, have fallen on deaf ears. So, some where out there, there are doctors and medical professionals that have studied, listened and can now believe us and hear our suffering.
Libby
So then commenced the visiting of the string of doctors I had to see who didn't have a clue about CFS, and all the blood tests and brain scans which didn't reveal a thing. In fact, all tests showed I was perfectly healthy and normal. I went to several ENT specialists for my hearing problem, they didn't want to touch it with a 10-foot pole. I soon realised there was nothing I could do about either CFS nor Hyperacusis (and I had contracted Tinnitus also, ringing in the ears). So I got on the net to do my own research and tried to get as much info as possible from there. I tried as many things as I could; all the vitamins and minerals, the probiotic treatments, the adrenal supplements; anything I could find that was supposed to cure CFS I tried. I slowed down when I realised I wasn't improving at all and when I saw things were getting too expensive. I also realised at this point that I had become hypersensitive to certain foods and vitamins which I hadn't before; things like Caffeine, alcohol, strong sugary foods, certain vitamins, all produced weird symptoms such as an intolerance to light, or migraines, dizziness, worse hyperacusis and tinnitus, further fatigue, etc. So I slowly cut out all these things from my diet as I realised them.
So at this point in time, after 5 years, things have improved only in a few areas. I no longer experience severe dizziness, and the fatigue level has lessened slightly. I still cannot lift anything heavy or run because if I do, I will be bedridden and in severe pain for up to 2 weeks. The best I can do these days is walk around the house a bit. I venture outside sometimes on days I feel brave, but the pain is excruciating, the intolerance to everyday noises such as birds chirping, traffic, even strong wind. It looks like I will be in it for the long haul, my case is moderately severe.
End of last year I contacted a flu off my mother, and this caused extreme symptoms such as hallucinations. I couldn't walk for a month and I thought I was a goner, was going to be bedridden. Although I slowly improved over a few months, I now have to take a tablet called Tramal for moderate to severe pain and this keeps me up all day at least. But I fear at this point of getting another cold or flu as I feel it could set me back even further, or leave me totally bedridden.
Rob
BUT - yes there's a but and it's a big one! His name is God and I don't know where I'd be today without him. Because I have a personal relationship with God, he encouraged me through the hard times always reminding me how much he loved me and that he was in control of my life. I shouldn't have really put that in the past tense, because he is still doing that today. I believe that God could have healed me any time he wanted to, but that he has his reasons for allowing me to suffer. I also believe that he wants nothing but the best for me and that in allowing me to suffer, he is using my suffering for his purposes. I don't know what all of his reasons are - none of us can totally understand God, but I do know that if I hadn't had to go through this, that I wouldn't be as close to God as I am today, because I wouldn't have had to rely on him the same.
Over the years I have come to accept my illness as a part of God's plan for my life. I believe this is the life I was meant to live. I have learned (painfully) to accept my limitations and to say No to almost everything! I know that I live my life completely differently from most of the people around me, but I believe it is the life God wants me to lead. I believe that God uses difficult circumstances to mould and shape our character and that he is using this illness to show me things about myself and hopefully to make me a better person!
I know that from the outside my life probably looks very boring and awful to healthy people, but I have found contentment through my relationship with God and have to say that most of the time I am content. Of course there are always times when I overdo it and end up really exhausted and then have to rest to recover, but most of the time I'm OK about it.
I think my health is improving very slowly. I can look back a few years and see improvements, and I'm so glad that I've had God there to help me through it along the way.
I wanted to share this with you, because my relationship with God is such a big part of my life and I hate to think how I would have coped with my illness without him. In him there is purpose and meaning and hope. Having a relationship with God is actually quite simple.
Your fellow sufferer!
Debbie.
typical physical things - sleep probs, ibs, etc. After spending 8 weeks with a 10/10 migraine (my rating - 10=hospitalisation required, cant open eyes etc.) that not even peth or morphine could touch i sort of hit rock bottom and decided that i couldnt live like this any more and decided i wasnt resting until i found answers. I certainly wasnt doing nothing before that - tried heaps of stuff, both "traditional" and "alternative" treatments, but no relief. At this stage i just wanted to get rid of my migraine, ididnt care about cfs - i thought that if i just got rid of migraine i could deal with anything. In my hunt through massive amounts of research i kept coming up with diet. I dismissed it at first cause i had removed things from my diet before with no difference, but it was so prominent i decided to give it a try. So i basically removed everything from my diet that had ever been recorded as giving someone a migraine in the whole of history, lol! I ate chicken, some vegies and stone fruit. After 4 horrific days of withdrawal migraine, during which time i nearly gave up heaps of time, my migraine disappeared. And it only returned when i subsequently ate things i then knew i couldnt have.
This was obviously fantastic, although i was a little frustrated at having suffered all that time when the solution was so simple!! So my migraine was gone but i then got a nasty shock when i realised i still needed 2 naps a day and that is was my cfs causing this, not my migraine like i originally thought. So that was a little devestating - i thought i could deal with everything else when i was migraine free, but it turned out that i couldnt. I still had other fibro symptoms too, including extremely stiff back and neck that prevented me from sitting for more than 5 mins at a time without seizing up in pain. So i kept looking.
I found an actual elimination diet called "the failsafe diet" which is a commercialised version of the Royal Prince Alfred Hospital's (Sydney Australia) Simplified Elimination Diet. So i started this. However, my migraines returned almost instantly. I stuck it out for 11 days, hoping they would go again but they didnt, so i reverted to my old diet. However, it was very noticeable that my cfs was a lot better on the failsafe diet. So i was stuck in the dilemma of chosing between migraines and cfs. Not keen on either set of symptoms, I decided that i would combine both and only eat foods from my original migraine free diet that were "failsafe". This didnt leave a lot but it worked in that i remained migraine free and my cfs was better. But it still wasnt fantastic. It's amazing how picky you get when you start to improve - it's like getting greedy, you have some improvements that you initially thought would be enough, but then you want more and more!! So i continued taking more and more out of my diet and felt better and better. However, in order to get down to the least symptoms i was confined to quinoa (a gluten free grain), celery, lettuce and white cabbage. Not entirely nutritious, not to mention downright
boring!!
I was seeing a dietician at this stage and every time we introduced something (single foods in TINY amounts like 1/2 a teaspoon) i reacted, either with migraine or being bedridden with cfs. It got to the point where she said my options were neocate (restricted infant formula - i had tried other formulas and reacted to these too!) or hospitalisation to test out the foods with capsules, neither of which appealed to me! At this stage a friend of mine with severely intolerant/allergic children was seeing a doctor who did a treatment called "NAET" which, according to her "got rid of" food allergies and intolerances. I did some reading up on it on the web and decided that it sounded like a load of rubbish, especially seeing as there was no research on it at all, but i figured i had nothing to lose so i may as well go and see what it was all about. They use kinesiology (muscle response testing - MRT) to determine whether you are intolerant/allergic to a food, which i knew going in, so i took in about 40 foods - some that i knew i could and couldnt have and some i wasnt sure about. I subjected this poor GP to double-blind testing for all 40
foods before i would even let him explain what he did etc., lol - the scientist in me! Despite him being 100% accurate i was still skeptical. He told me that there were about 8 foods i could have, which i hadnt actually tried. Then he "treated" me for a few foods and said that after avoiding them for 25 hours i could eat them without any problems. His treatment consisted of a few minutes of acupressure along my spine and that was it and i remember thinking he was a nutter cause that couldnt possibly make any
difference, especially when my reactions were so severe and intense. I wasnt happy when i left the session but mum (who came with me) convinced me to just try eating the foods he said were ok and see what happened. So i introduced all of them all at once, with no regard to quantity and waited to react...and waited...and waited and nothing happened! I thought that this must have been a coincidence cause i couldnt comprehend how something so strange and seemingly simple could be so helpful so i introduced the foods he treated me for (after waiting 25 hours) with the intent of proving that it didnt work. However i was completely astounded when i ate a massive amount of foods that previously made me so ill in 1/2 teaspoon quantities without any effects! For example, 1 grape previously gave me a
massive migraine within a few hours that lasted for 4 days (and this was only a few weeks prior so it couldnt have changed). I ate over a kg of grapes (i wanted to be sure!!) and nothing happened. I couldnt believe it but it had certainly got my attention!
To cut a long story short, i have since been treated for many things, from foods, chemicals, fluro lights, computers, water, vitamins and minerals,environmental stuff and, still much to my amazement, i am now free of all symptoms and eating and inhaling whatever i want. So many of these things had me in bed for 3-4 days with all the "bonus" symptoms of cfs and fibro but now they cause me no probs at all. It took me so many treatments and experiences of clearly no longer reacting to things to believe in what i
was doing, and even when i was symptom free and a complete believer in NAET it took me at least 3 months of being completely healthy before i could accept the fact that i was going to stay this way and that it wasnt all some sort of fluke. In amongst this i also did a treatment called NET (great field for acronyms!) which is similar but looks at the emotional side of things and this helped me immensely as well, even though im not a person that would be considered to have "emotional problems".
Mick