My ME/CFS Journey

In the beginning
In the fall of 2013 I started to experience a variety of symptoms that included extreme fatigue (worsening 24/48 hours of activity), headaches, muscle ache & weakness as well intermittent dizziness.

It really stopped me in my tracks. I went from being able to juggle work, studying for my ICAEW exams, Chairing a local charity as well as having a very active social life; to being house bound (sometimes even bed bound), I felt like everything I had worked so hard to build was slowly slipping through my fingers.

My work &  GP were great really supportive, I initially got signed off for a few weeks whilst we tried to figure out what was wrong, work straight away put me on a phased return (3 days a week & reduced hours) as well as getting an external vocational rehabilitation adviser involved.

This however was still too much I was calling in sick on a regular basis, getting frustrated at myself for not getting better or understanding what was going on. The GP ordered endless blood tests, all of which continually came back negative.

Getting Diagnosed
As things worsened my GP explained to me that she thought that I had CFS/ ME, but I needed to have yet more blood tests done as a process of elimination before she could make the diagnosis and refer me onto a specialised clinic.

Once these came back negative at the end of Jan 14, she made her diagnosis and I made the decision to get signed of work at the recommendation of my GP (something that I resisted up to this point). She wanted to sign me off initially for 3 months, but I was very taken back by this so compromised at 1 month, as at that point I was not psychologically ready take so much time off (I later got signed off for a further 2 months, taking my time off to around 3 1/2 months).

I was referred to the South West ME/CFS Clinic held in Frenchay Hospital, I got my referral through in March, but had to wait until June 14 to get my first appointment.

Acceptance
In my first month of being off work, for the most part I couldn’t really leave the house and spent a lot of time in bed, as I was so exhausted, I felt like my limbs were made of lead and everything hurt.

During this time with the help of a councillor I managed to accept my condition, and for the first time in my life I allowed myself to rest. I stopped putting pressure on myself to do things I simply wasn’t able to do at the time.

I tried to stop thinking along the lines of:

  • ‘I should be able to do this & that’
  • ‘So & so must think I’m not really ill, because I don’t look physically ill’
  • ‘I’m 24 years old, I should be able to so X without it exhausting me!’

Don’t get me wrong there were days (and still are sometimes) when the above thoughts overwhelmed me and I had a bit of a pity party; especially when I saw my friends doing things I wanted to be doing with them & felt isolated because I couldn’t really do anything .

The important thing to try and remember is to let these feelings and thoughts drift away, this is really hard! I have found meditation helps me do this a lot, I will put a whole post on how to meditate easily.

Recovery

I am by no means near the end of my recovery but I am defiantly heading in the right direction, I will use the CFS Tips page to post things I have found helpful & not helpful and pretty much anything that has helped or I found interesting.

Here are some direct links to some key posts:

  1. Acceptance then action – (Link)
  2. Pacing (Link)
  3. Social Activities- Cinderella Syndrome (Link)
  4. Nutrition (Link)

 

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3 thoughts on “My ME/CFS Journey

  1. Hi I came across your blog by accident really my brother eats gluten free and I like a page on Facebook to get some ideas for him then saw your comment and blog. I myself have recently been diagnosed with cfs and fibromyalgia symptoms. I can relate to your post re pity parties etc, I cried for a week after my diagnosis and also still do get down about it sometimes. Have you found gluten free helps ? I’m looking forward to reading more of your blog x

    • Hi Tracey,
      I am so glad you found my blog, I have put up several new posts about ME/CFS that I have found useful. You can also like the related facebook page which fingers crossed will show all new posts 🙂

      Hannah

  2. Hi, I also came across your blog by accident. I was finally diagnosed with ME about 9 months ago after several years of GPs telling me there was nothing physically wrong with me, apart from maybe starting the menopause. I was struggling to cope with work and had no life and only managed to keep my job because I work in a school and get the holidays off. The diagnosis was a huge relief and gave me permission to admit I was Ill and stop struggling. Pacing and vitamin b12 along with other supplements helped but was still barely coping. Then I saw a different doctor who was convinced it was a wheat allergy (tests for coeliac disease were negative). I cut out gluten and within 3 days felt amazingly better. 4 weeks on I’m getting better and better! Getting my energy and my brain back and lost my bloated tummy! Blood tests came back negative for any food allergies so I ate some ordinary bread last week to see if feeling better was a coincidence – it wasn’t – felt awful again so I have decided to stay gluten free. I hope this gives other ME sufferers something else to think about to try to alleviate their symptoms – blood tests sometimes give false negative results so even if you doctor says it’s not gluten it’s worth cutting it from your diet for a few weeks to try.

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