Intro to Toby Morisson Road to Recovery (UK Seminar Part 1)

Toby Morrison has been one of the most important parts on my road to recovery from CFS/ME (which is by no means over!). He is a true inspiration to all suffers and really understands what we need to hear in order to help ourself, being a ex-sufferer himself.

I stumbled Upon Toby by accident on youtube (Link) and it was the turning point in my ability to help myself, it put pacing and baseline in a way that I could understand and make work for me. His Facebook groups, free webinars and videos not only gave me really useful tips, but always put a smile on my face, Toby just radiates positivity which is truly infectious.
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My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)

My NHS experience with CFS – Part 1 (GP and referral to specialist clinic)

I know that a lot of people have had very bad experiences with doctors and the NHS, however this really hasn’t been the case for me.

First step for me was having a fab GP, she was supportive from the outset and explained that she thought I had CFS, but had to do a load of tests to rule everything else out.

It took from Nov13- Jan14 to get through that processes, as I needed to have a couple for re-tests done, after all came back within range ‘normal’, my GP gave me the CFS diagnosis and referred me to one of the 14 specialist centres in the UK for the development of services for people diagnosed with Chronic Fatigue Syndrome/ME. Continue reading

Getting Diagnosed CFS

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.

Having a supportive and understanding GP is essential, if you don’t my advise to you is keep switching until you find one that understands what you are going through.

I found the NHS website pretty useful in letting me know a bit more about the condition and what I should expect.