• Sal_1976 - My CFS Story

    I have been sickly for most of my life and with hindsight I would say I've had CFS on and off since childhood though I wasn't diagnosed until I was 31, 4 years ago.

    I will concentrate on my CFS life since the age of 30. My 20's were relatively health problem free and I lived life to the full. My life was a social whirl and I managed to get by on very little sleep and caffeine. In my late 20's allergies and intolerances started (no idea if this links with the CFS or if it is a huge coincidence). I studied for a BA (hons) degree in my late twenties and decided to go on to do a masters degree. The 4 months between finishing my BA and starting my masters were extremely stressful (house move, relationship breakdown, emotional stress, money worries) and I personally feel that I suffered emotional burnout. By the time I started my masters degree I felt lethargic but looking forward to my studies.

    I was 2 weeks into the masters course when the problems began. I woke up one morning and couldn't stand up and felt extremely nauseous and dizzy. I was diagnosed with Labyrinthitis. I had these symptoms for 6 weeks before they dissipated, but I was left feeling drained. I went back to resume my studies and then 2 weeks later I was struck with overwhelming dizziness, light/noise sensitivity, vomiting, hot/cold etc etc. (Unfortunately it took doctors 2 and a half years to diagnose all sensory migraines and CFS).

    What I can't believe is that the first GP who mentioned I could have CFS simply said 'you have CFS, don't worry about it'. No mention of possible therapies etc and he didn't explain anything about the condition to me. It took another 2 years of fighting and doggedly nagging doctors for help before I was diagnosed.

    I go through periods of what can only be called remission. I have, for the past 3 years, only been able to work part time in a library (unfortunately in a manual job). The hours were irregular with both day and evening shifts and I found it incredibly difficult to regulate my energy levels. I'd often be flaked out at home during the day before starting work at 4pm. During this time my main symptoms have been the inability to regulate my temperature (often feeling 'bone cold' as I call it) which is particularly noticeable in the summer months when I am sat indoors fully clothed under a blanket and I am still shivering. My use of vocabulary has been affected and I often simply have no idea what I am saying and forget words frequently and my concentration levels are appalling. I even find it hard to sit through a film (film is one of my passions) because I just can't concentrate on the plot. Oh, and my memory isn't that great either. I often forget things that happened last week - I have now made my diary my best friend.

    I changed to full time 3 weeks ago and miraculously, despite working more hours, my energy levels have increased; probably because of the regular hours. However, because of my renewed energy and apparent lack of symptoms I began a health kick (I thought make the most of it while it lasts). Friends and family warned me that I'd crash and burn....and they were right. 2 weeks in and I started to feel extreme lethargic...then came the bone weariness and temperature control problems. Then a week ago, on Monday morning I simply could not get out of bed and when I did I was dizzy and felt faint (I also suffer from low blood pressure - not sure if this is CFS related). I had vertigo last year for 9 months and my 'crash' brought it back. I had that horrible pulsating body ache/numbness/dead weight (where you feel as if you have melted into the bed/chair) that seems to be linked to CFS and I felt like I was dragging myself around the house for a week. I'm back at work this week but the health kick is on the back burner for a while and if it does restart it will be nowhere near what I was doing 2 weeks ago. Being weight healthy and slim is not worth feeling that poorly for.

    Depression affects me because I yearn to be the sociable, constantly on the go, able to do anything woman that I was before and I find my life so frustrating it gets me down sometimes. But then my family and friends give me the support and encouragement that I need and life seems better when they make me see the positive things in my life. I guess the moral of my story is that I am a perfectionist and am always pushing myself too hard in all areas of my life (work, education, health, weightloss, friends, family). This is what, I believe, gave me CFS in the first place and I still have my moments of madness where I set myself targets; achieveable for non-CFS sufferers, but not for me. I need to wise up with that or I will continue being my own worst enemy.