Hi, I'm hoping someone can help...
I was diagnosed last year after a really long, confusing and increasingly desperate journey to find out what's causing my many wierd symptoms. Í can't remember being all that well even as a kid. As far back as I can remember I always slept a crazy amount - I would giggle with relief at being allowed to go to sleep - but I noticed a big downturn at 15. Couldn't wake up, always exhausted, thought I was going to have a heart attack if I played sport and felt like I could feel my brain pounding around in my head, developed numb feet in the cold, dizziness when standing, sudden massive hayfever, an out-of-the-blue convulsion. Somehow I let this go on and escalate for the past twenty plus years. I've been from doctor to doctor - probably 30 or more including alternative practitioners and even a CFS-relevant style of therapy - and been diagnosed with lots of red herrings along the way - coeliac disease, irritable bowel, endless other food intolerances, the odd bout of depression (after 20 years of living like that - sure!), rampant candida overgrowth, anxiety, sinus headaches, insulin problems, it just goes on. But.. I've never been bedridden, I've worked my whole life with only breaks when I've burnt myself out, I may have dragged myself to work every day and felt like a brainless zombie but I could always make it to the weekend, mine has been a gradual progression not sudden onset. The problem is that I'm never convinced I have CFS and it's just so hard to be in this state of constant limbo and doubting. One day I 150% know that I have it, but the next I think I'm just lazy, or oversensitive, can't deal with stress like other people, or let my food allergies go unchecked for too long, or have no discipline, or maybe I need a psychologist, or I'm possessed by a ghost .. it's ridiculous! I've never met anyone like me so it's hard to believe this is real - I feel like I'm living with this invisible bratty 2 year old that I have to drag around all day that no-one else can see. My family don't believe it's real - my Mum cut me off when I tried to tell her about my diagnosis and my family haven't uttered the words chronic fatigue since. I'm so confused about how to help myself, and I really just want 1) a far more normal life or 2) to be sure that this is not going to change significantly and that I have to invent a radically different life for myself .. and I have no idea what that could be. Maybe I have to be resigned to never having a bigger apartment (mine's tiny = low maintenance!) in case I can't work and meet my payments, not having a relationship because if I try I realise just how abnormal my energy levels/life has become - noone else has to pace" themselves plus IBS is embarrassing!, never having kids, never even having a clean house or holidays away with people etc and to not even have an explanation for why none of that is possible that I can share with people and have them understand. Most people seem to think I'm just some introverted hermit by choice and/or a bit of a baby who can't assume normal adult responsibilities, particularly since it's been going on so long that no-one (myself included) can remember me being much different. On plenty of days I figure that must be true.
Does my life sound like anyone else's out there?? Do other CFS sufferers think I have CFS?? Can anyone suggest what I should try to help myself feel better??
FYI I shipped in some of Dr Teitelbaum's D-Ribose and had some ripper weeks on it. Stopped taking it because - murphy's law - it upset my stomach more. I'm keeping it as a backup plan though.
Would appreciate the help of anyone out there, sorry for the long post!
S.