Exsert from a paper online: My intro to my experience but for my dissertation need to keep it general which I will find extremely difficult. As its my personal story to tell! Check out my you tube stories- Kirsty Blundell Chronic fatigue channel I have done 2 live videos so far!! Yet to build content. Also dreaming of starting a meet up group but subscription costs £11 a month. A club for chronic fatigue sufferers I could do this on facebook actually a facebook group.
The embarrassment of being ill- feeling like half your brain has fallen out and you feel dumb all the time. Spelling - I lost how to do. Basically in lay man terms you feel like a stroke survivor in terms of how the illness takes over your brain. and afterwards when your recovered- mental health takes over. You feel controlled, stupid, dumb unable to make own decisions which makes sense from having an illness for 9 years. As thinking then hurt. My brain once I couldn't see that well I didnt know where we were- we were in North Berwick I struggled to see the sign though the brain fog- my mum had to tell me she thought I was joking. Once my friends had to sit on a bench with me as I couldnt walk anymore I felt bad as they wanted to walk more and it annoyed them as I could of sat down myself but they did after 10 minutes of complaining. But otherwise I always managed to meet up with people though horrendous headaches and tiredness. I got socially excluded at school and would just walk on own sometimes as I dint feel like talking. My mind lives in the past. Automatically I think I have 3 years for my brain to catch up with the healthiness of my body. They always say the brain is the slowest to heal- the body and mind are connected although very surprising things happen at times. The other worst time when ill but now from mental health from a 9 year illness. My brain fog so bad I went into my head it was windy we were having fish and chips by the sea. I felt I wasn't there I dissociated I think with reality- the bloody fish and chips in the box I had to hold onto as it would fly away. I didn't feel normal I had been there before. My dad was reserving into a space and I struggled to direct him back. As so in my head. After my illness my whole reality has been skewed I remember alot of things but have to ask as forgotten what happened on that day or my memory different from it. Yes- I am extremely bitter about the past how people treated me how easy to exclude someone from a group being left on my own. Called names then sensitive. I missed all the personality building in S1 and S2 where u start to fit in and relax. Sure I am building on that now. Envious- of how amazing certain peoples life appear on instagram. How my social anxiety makes me say odd things and how I view myself badly cause of it. I struggle working as I feel to mentally tired and lazy then I become shy and a perfectionist everything has to be right - I can;t do anything wrong. Then when you live in the past you act odd now and then people comment on you acting odd and it becomes a whole thing. I haven't dated for a while may go on hinge or tinder done it all before but may want to get back into the game problems and all. I mean everyone has their baggage is it off-putting- maybe. I got invited to an old mates wedding last year- wasn't sure whether to go or not as they would of ignored me her friends who used to be mine then too -my parents went though. The pain of no one understanding now and in the past- family included they don't know what's in your brain and how you are past it but you still feel the ripples from it.
please check out this link to the article- https://www.sciencedirect.com/science/article/pii/S0277953607005023
Self within a climate of contention: Experiences of chronic fatigue syndrome
They [colleagues] rang up to say why wasn’t I at my appointment and my husband said, “she's gone out.” He couldn’t bring himself to say she's passed out on the bed … I felt then it had to be something that I should be hiding … I feel that in many ways when people around me and close to me deny it, then I feel shame. (Female, 47 years, previously a health worker, retired due to CFS).
Guilt and shame reflected perceptions of personal failure and inferiority and consequently, were associated with decreased self-worth, isolation and estrangement.
Participants felt displaced from their own lives and from humanity. This displacement specifically arose from invalidation (notably stigma) and neurocognitive disturbances, and was felt as a dislocation or altered reality that resulted in estrangement. One participant described the relationship between impaired memory and estrangement in this way,
With my memory loss I forget tracks of my life, people, conversations … that's where I think you get this sense of [being] removed from reality because your memory is playing such tricks on you. (Female, 47 years, previously a health worker, retired due to CFS).
Further, they felt their lives had stalled or were suspended while they waited for a return to health. As described by this participant, they had lost their place in the progression of life.
It's like the earth has stopped, but all of a sudden something is going past you … I’m existing, the whole world out there is living. You’re staying still … You can see everyone moving and you just can’t. (Female, 29 years, full-time consultant).