As some of my readers may have noticed I have not been posting as much lately. This is because I am suffering from what I call "fatigue". The reason I call it that is because even though I have been like this for over half my life now (18 years and counting) I have never had a diagnosis. So I have to name it something. I have to continually describe how I feel pretty much every day of my life to people because I haven't got a name for it.
My Fatigue History
I started noticing something was really wrong with me after I had a glandular virus when I was 16 going on 17. I remember my very first job was working in the office of a shoe shop and I just couldn't cope with it and I remember my boss talking to mum when I handed in my notice saying "Do you think your daughter has M.E?"
When I was 18 I got a great job working in I.T. Support. I have always had a keen interest in computers and gadgets and I really thought the job was going to be the making of me but again I couldn't cope with it, the longest I went without having a day off in the week because I felt ill was five weeks. I then started a job in web design which I really enjoyed doing but within the four days I was there I became ill and was diagnosed with glandular fever. Following on from that I had depression and I have been on anti-depressants since then. However the fatigue started way before the depression so I don't think the tablets make me more tired.
After that Mum bought a B&B which I helped run. I would help in the mornings and then go back to bed in the afternoons. When Mum sold the B&B I found my most recent job which was working from home helping to run a B&B booking agency. I worked for B&B Net for ten years and for me it fitted in with my fatigue well. I had a good boss who was very understanding to my illness and I basically managed to work around sleeping. Sadly I was made redundant last summer.
How Fatigue Makes Me Feel
I am continually trying to explain to people how I feel and it's so hard because I feel like I can't find the right words to describe exactly how I feel. When I wake up in the morning I don't feel refreshed. I never wake up and feel "it's a new day lets get up and get going." I wake up tired.
A typical fatigue day: I get up. I have some breakfast and walk the dog around the block. I come home and I feel this overwhelming feeling of tiredness. My whole body aches, my eyes feel sore something inside me says that I can't cope and I need to rest. I go back to bed for a couple of hours and hope that the afternoon will be better. I get up, have lunch, walk the dog, come home and get the same feeling again so I go to bed and get up for the evening (on really bad days I even end up back in bed at 8pm again). I can't remember a time when I didn't feel tired to be honest but some days are worse than others. Some days I feel so tired it upsets me and I cry because it makes me feel so bad about myself and such a failure. On really bad days I sleep 20 out of 24 hours.
I feel despair, upset and like I am wasting my life away but I can't seem to find a way out of it. I think some people think I am making it up and I am just lazy or something which makes me feel ever worse about myself.
Sometimes I have a good day and don't go back to bed all day but then I am most likely to have a bad day a day or so afterwards.
I have seen about five different doctors in the last 10 years, some in Bath where I used to live and so far one here in Kidderminster and still I have no diagnosis. I have had countless blood tests and nothing shows up. I have been tested for all sorts of things such as thyroid problems and diabetes. When the results come back with nothing the doctors seem to give up on me and I go back to not knowing what is wrong with me until I decide to go to a different doctor in the hope that they will diagnose me.
If I had a diagnosis then maybe I could work on it or find out some way to help get better. At least I would know what was going on with me and make it easier to explain to other people how I am feeling and what it is. At the moment I am unemployed and have been for a year. I want to work but right now I don't feel I could cope with it and I won't apply for jobs when I know I can't be reliable. I feel like such a failure and so down about myself because of this. The illness whatever it is rules me. I don't feel like I have a choice. I am very lucky I have such a lovely fiancé who is very understanding and doesn't put too much pressure on me. I find the simple things in life like doing the house work hard sometimes because I am so tired. When I was in Bath I would often call my Mum down to help me. I feel like such a failure that I can't even cope with normal day to day living sometimes.
Later on this month I have booked an appointment to see a different doctor. I really hope she can help me get to the bottom of this so I can move forward. Right now I just feel like I am wasting my life in bed.
So if I go quiet on my blog for a few days it's most likely that I am not feeling up to it. I am just too tired to concentrate sometimes.
Fingers crossed I can get to the bottom of this and get my life back on track.