Thursday, 4 September 2014

Fatigue or Extreme Tiredness? - 18 Years And Still No Diagnosis

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. 


No Diagnosis

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 fiancĂ© 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. 

19 comments:

  1. I've had fatigue whilst ill with Ulcerative Colitis, and it is so very different to your average ordinary tiredness. It's debilitating, like all your energy and motivation drains out of your toes. Really not nice. Thankfully I only get it ocassionally now. So sorry to hear you have suffered with it for so many years, it must be horrendous. The people that matter understand you and care for you. Anyone who is ignorant enough to judge you and think you are a failure is simply not worth bothering or worrying about. You know you're trying to deal with this and that's what counts. Be strong and here's hoping they find something to help you soon. x

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    1. Thanks for your comment Kay. I find it very hard to explain how I feel. Some people say it's all in my head and I am lazy which is upsetting. It's not nice. Sorry to hear you suffer from it a little too x

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  2. I was born with Eczema & Asthma, at aged 5 I was diagnosed with allergies. At the age of 18 I was diagnosed with Ulcerative Colitis, then around 30 -35 was diagnosed with Depression & Anxiety & IBS. Then IIH (Idiopathic Intercranial Hypertention) & diagnosed with CFS at around 38.

    I know exactly how it makes you feel, exhaustion does not go far enough to describe the overwhelming weakness & exhaustion. When the Dr's & Scientists finally find out what CFS/ME is & the extent that it wrecks out body's & life's I think many people will be shocked. I just hope it's in my life time it happens.

    The trick is to understand that I (you) would not understand this level of exhaustion unless I felt it myself. I believe that's why people don't get it, & I am really pleased they don't because I would not want any single person to feel this.

    Just remember you are not on your own with this

    xxx

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    1. Thanks Tracey. Sorry to hear you are suffering too. I have times where I am so tired I can't even think properly. I can't concentrate on things. I just need to go to bed. I just hope I can get some diagnosis because it's hard to explain to people. At least if I had a diagnosis I could send them to a page to read about it. I feel some people think I am making it up xxx

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  3. I suffer the mental health too. After loads of tests we found that I also had excess Iron, Haemochromatosis, It's worth asking and can be discovered through normal bloods. anyway good luck.

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    1. Thanks Stevie. I had a number of blood tests last year and all came back clear but I will ask them if they checked for everything.

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  4. I know the GF virus can lay dormant in the body for years after you have the illness. My late dad had GF when he was a young kid and suffered the occasional bout of depression in his 30s and 40s because of it. Perhaps that's what it is still??

    I know when I have very, very bad depressive episodes I get extreme fatigue where I can barely keep my head up and my eyes open so I feel for you honey as that's one of the worst things I go through, so enduring it longer than I have to would be my worst nightmare.

    xx

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    1. I have been on anti-depressants since I was 18 which I have to be on for life because it's an obsessional thoughts type depression. My sister has the same but she doesn't get tired like I do. It's really horrible living with it and feeling useless not being able to do the simple things sometimes xxx
      They do say GF can last inside you for years. I don't know. I have an appointment with the doc in a few weeks time. I might print out my blog post to take with me.

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  5. I have days when I can't even lift my head up as I'm that tired & feel I'm having a fight with my body. It is so hard to put into word how debilitating this feeling is. I have something wrong with my blood (its a very long name beginning with S that I can't get my mouth around to pronounce!) So I'm hoping that if they sort out the blood, then maybe this tiredness will go away. It truly is an awful feeling. Take care hun. xx

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    1. Awww I hope you get it sorted and feel better soon. I had loads of blood tests and nothing showed up. It's horrible not knowing and feeling tired all the time. I feel like I am wasting my life in bed.

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  6. Why have you not been diagnosed with CFS already?

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    1. No idea. I haven't been diagnosed with anything.

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  7. I'm sure you've already explored all avenues including the holistic approach. I can recommend a website called Earth Clinic as it has such good advice on how to treat illness in a more natural way and they have a section on CFS.

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  8. Setting yourself goals and trying to achieve this at your base level seems a good idea and then trying to add a little bit more as time goes on would be the next goal. Good luck x

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  9. Are you aware of Spoon Theory? It might help you explain to others how you feel?!

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  10. I have been through all of this and after many years of being fobbed off by the doctor I was recently diagnosed with Fybromialgia and CFS both have no cure but can easier to live with if you have a proper system of managing symptoms. Have you been to see a specialist? A gp will not usually diagnose you but refer you to a specialist in these kinds of disorders. Don't give up! x

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  11. I have been through all of this and after many years of being fobbed off by the doctor I was recently diagnosed with Fybromialgia and CFS both have no cure but can easier to live with if you have a proper system of managing symptoms. Have you been to see a specialist? A gp will not usually diagnose you but refer you to a specialist in these kinds of disorders. Don't give up! x

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  12. Friends and colleagues have been cursed with health professionals who are ME `deniers` and led them thro` years of confusion and pain. Tiredness kills.

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  13. its the not knowing the answers that it is hardest to deal with :-(

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