My experience with CFS

I developed CFS when I was 13 years old after having glandular fever. Before getting a diagnosis my symptoms were put down to multiple different things-my period, anemia, celiac disease, dairy intolerance.. it was stress that I didn’t need on top of my exhaustion. When my GP finally diagnosed me with CFS, she referred me to a pediatrician. There wasn’t much they could do because chronic fatigue doesn’t have a ‘cure’. I was given sleeping medication to try and regulate my sleeping pattern, biweekly vitamin injections and referred to a OT. I started using graded activity which means you increase your activity gradually so your body has time to adjust. I found it really difficult because when I had a ‘good’ day and felt like I could do slightly more, I would. But then I’d suffer the next few days and be even more exhausted than usual because I’d done too much. It was a vicious circle. CFS was made worse for me by the fact that I was also unwell mentally. My first suicide attempt made things a lot worse. At that point I was still attending school part time but my attendance dropped afterwards until I wasn’t going at all. I lost contact with all my friends, because who wants to be friends with the crazy girl who can’t get out of bed? My OT then went on maternity leave and although I was happy for her, I was sad because this was yet another change. At this point I was doing coursework from home (my school had allowed me to only take maths and English language GCSE and BTEC health and social care) and my new OT was helping with coping techniques. I managed to get through my exams and came out with 4 C grade GCSE’s. I was pleased that school was over but at the same time, I was scared. Where was my life going? I had no friends and I wasn’t healthy enough to go to college or sixth form. My mental health was deteriorating quickly and I started to isolate myself more than ever. I turned 16 that June and because I was too old to carry on seeing my pediatrician, I was referred to a CFS specialist for adults. As with my previous consultant, there wasn’t much he could do other than advice me to keep taking melatonin. The months to come are a blur. I spent almost everyday in bed, too exhausted to get up and too tired to care. I stopped eating because that was the only aspect of my life that I could control. I hated myself and everything about my life. What was the point in my being alive when I wasn’t living? In June 2013, I became an inpatient and during my 10 months in hospital my CFS appeared to have gotten better. Now as an 18 year old, unfortunately over last month or so, I’m aware that I’ve most likely had a relapse. Things aren’t as bad as they used to be, because this time I have people to support me and people I can be honest with but I’m struggling more and more with everyday things. I’ve got an appointment next month with my consultant which will hopefully help the situation. I’m don’t know if I’ll ever ‘recover’ from chronic fatigue. I knew that it was very likely that I’d have another relapse but in the back of my mind there was always that bit of hope that maybe I could ‘beat it’. Hopefully one day I can say that I did.

8 thoughts on “My experience with CFS

  1. Hello, I have had cfs for 6 years now and am suffering from a flare up (or relapse-everyone calls it something different lol) what I’m trying to do is change my diet, and gradually try and change my mindset, I have decided to do two things a day: 1)Watch something which makes me laugh–I tend to go for friends or the big bang theory and 2) achieve something positive each day (sometimes its only something as small as washing my hair–but then I realise thats not small at all because its more than I did the day before) Also, if i can (money-wise) I buy myself a little treat every week, this week was slippers! They are so comfy! πŸ™‚ I’m no where near better but if I can control the little things- It goes a long way! Wishing you a speedy recovery πŸ™‚ xx

    • I’m sorry you’re having a difficult time at the moment as well but thank you for your lovely comment. Awful reality tv is my current entertainment haha and I think I’ll try getting myself a treat because like you said, even something as ‘small’ as washing your hair is something to reward yourself for! Sending you positive vibes πŸ™‚

  2. Thank you for sharing your story! I have been through a similar experience. I was housebound with CFS for 3 years. It took a year of NHS tests before I was diagnosed with CFS. I could not accept that there was no cure and tried out lots of therapies. I cured myself using diet and lifestyle changes. Check out my blog for tips on how to treat CFS. I wish you a speedy recovery! x

    • I think accepting the fact that there’s no set sure is the hardest part! I’m so happy that you have recovered from yours and I hope you continue to stay well.
      Do you have any tips (or particular posts) you could give me for beginning to make healthier choices? This might sound silly but I’ve never really considered that changes like that could help! Thank you for your kind words πŸ™‚

      • Yes it’s hard to accept that there is no one thing to cure ME/CFS. It takes a combination of changes over time to get well. Thank you for your kind wishes. I will write a post for you on beginning to make healthier choices when I have time. I would say to research a healing method you are drawn to and go and visit a therapist. For me it started with acupuncture, but it may be nutrition, EFT, reflexology, clutter clearing, meditation, acupressure etc. This post detail the therapies I started with on my healing journey: I would highly recommend going to see a bio-resonance practitioner to get tested for viruses, candida and food allergies. Lifestyle changes you can make include avoiding stress triggers and trying a simple breathing technique such as buteyko breathing to calm down the overactive nervous system. I hope this helps in some way πŸ™‚

      • Thank you so much. I feel like this is something that I should have considered a long time ago so I’ll be following up your recommendations! I see a CBT therapist for anxiety issues and such, but what sort of therapist would you suggest? I’ve used relaxation tapes in the past (which were suggested by an OT that I saw through paediatrics) but never too consistently which I should probably start to do again. Sorry for all the questions, it’s just great to have recommendations that have worked for other people. X

      • Yes relaxation music works well as does aromatherapy. They are simple things you can do. I would recommend visiting a nutritionist as when I went they cured my fatigue with diet changes and supplements. An EFT therapist would be good to see for anxiety. Healing wishes x

  3. Pingback: School Days and Old Friendships | secretsofmollysmind

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