Today marks the beginning of invisible illness awareness week (8-14th September) and to raise awareness I am going to post a blog a day whether that be in my new personal updates section or even a recipe.
To start the week off I am going to participate by sharing with you the “30 Things About My Invisible Illness You May Not Know” if you would like to participate or find more about invisible awareness week click here.
30 Things About My Invisible Illness You May Not Know Continue reading
After I had attended the foundation seminars held at Southmead which covered a variety of issues including: Activity Management, CBT & GET (Link), Rest & Relaxation (Link), Sleep and Stress Management (Link); I then attended a follow up with my CFS specialist, this was very much a session lead by me where I could ask for help and guidance with the issues I was really struggling with.
Before this session I had a good think about what it was I needed the most help with from her. The two areas I found I wanted her advise on the most were: Returning to work/ Phased return (Link) and the best way to increase my physical fitness/ exercise. Continue reading
During my first appointment at the North Bristol ME/CFS clinic (based at Southmead Hospital) my OT explained that the way the clinic works was that once my diagnosis was confirmed which occurred during that appointment (Link), I would be invited to attend their CFS/ME Foundation Course. Following the completion of the course I would then have a second one to one with her.
The foundation course consisted of two 1.5 hour long seminars which covered very basically an array of management strategies:
Once I had attended these seminars and digested their content, I would then attend a follow up with her, which would be lead by me, I could get specific support on what I felt I needed the most. Continue reading
As part of the North Bristol Trusts program for CFS/ME they can send you on various courses, to begin I was sent on the foundation course, which consists of two 1 1/2 hour long sessions.
I wanted to document the whole process, as I really had no idea what to expect and I am aware that a lot of people do not have access to such services:
In the first session we talked about: Symptoms, CBT, GET, Activity Management (Link). The second session I have split into two posts, this being the second the first however was mainly on rest and relaxation (Link).
The main focus on this session however revolved around Sleep Management and then talked a little about Stress Management at the end.
Please click the link below if you wish to download the foundation course 2 hand out provided: Continue reading
As my number of posts increases I thought it would be useful to create an index so it is easier to see older posts:
Personal Journey/Stories
Top Tips
My NHS experience with CFS
CFS/ME Research
So I have to admit I wasn’t quite as enthusiastic and with it at the second part of the NHS CFS Foundation course, as I had way over done it earlier in the week, we have all been there at some point.
Like parts 1 & 2 of my NHS experience with CFS, guiding from my experience with my GP and assessment (Link) and the first foundation seminar (Link), this post I will talk through what I got out of the second and final foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day. Continue reading
My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)
As I mentioned in a previous posts (link)I was diagnosed with CFS and was seen by specialist clinic within about 9 months of symptoms first appearing. Which is really fast compared to other peoples experiences, I attribute this to an amazing GP.
So I really wanted to document my experience with the specialist NHS clinic, because before I got seen I had no idea what to expect, and I know so many people struggle to get any treatment for CFS.
I had heard very mixed reviews from different people, which I think might be due to what different people expect to get from the clinic – there is no miracle cure to CFS/ME so don’t expect that.
I went in with an open mind and was very glad. In this post I will talk through what I got out of the first foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day.
Continue reading
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
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.
Gluten Free Adventures & M.E 