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.
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.
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.
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:
- Acceptance then action – (Link)
- Pacing (Link)
- Social Activities- Cinderella Syndrome (Link)
- Nutrition (Link)