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I was diagnosed with CFS when I was 13 years old, I spent a lot of my teens trying my hardest to join in with everything and not sit in the house or sleep for hours. Before I was diagnosed I was really active and used to swim 5 times a week as well as play tennis and row all for differnt clubs. CFS completely stopped me being able to do any sports or anything really.
I struggled for years with it and my mum was so concerned, other family members were a lot less understadning and said it was just because I was a teenager and I didn't want to participate in things which was totally wrong. At 18 I got Galandular Fever and because of having CFS as well I was really unwell, I had to do college work from my bed and hardly ever made it into lessons. Then one morning around 6 months later I woke up and I felt like a cloud had lifted.
Since then I have been to university and spent my time trying to be like everyone else and have nights out and enjoy myself while I was still able to. I then went into the working world after I graduated. I struggled to keep up with everyone else but found so many ways to be able to do things such as sleeping during the day and learning to say no when I knew it was going to knock me back if I went out. I work in a stressful industry where when I was feeling well I could work up to 15 hours a day (as you can imagine the aftermath of that was horrible)
Around two years ago my mum passed away and I threw myself in to work and trying not to be lazy mainly because I felt like no one else understood apart from her. In the last year I have tried to be more careful and calm down a bit, I am now in a job where I mainly work from home which helps a lot.
However, I just seem to be getting worse. My symptoms seem to be worsening, I have always had really bad sore throats, bowl problems and everything else. I now have days where getting out of bed is just not an option. I have always been able to push myself and make myself cope but I am losing that control and even walking to the shop is a massive task. I have been to my GP but they have just said there is nothing that they can do. I don't want to be like this at 24 years old I don't want to have to sit inside and be in bed all day. My main problem with CFS is that I am one of those people who loves being around other people, I am a really sociable person so working from home is tough enough without not being able to leave the house for a pint of milk.
I am sorry to rant but I just wondered if anyone had any experience of this getting worse! My doctor always said if I manage my symptoms I will be able to live a slower paced but pretty normal life.... and that seems to be slipping away from me.
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