Category Archives: CFS Tips

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

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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 →

Demystification of meditation

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Demystification of meditation

There is a lot of hype and mystery about meditation, however it is really doesn’t have to be complicated, full of odd poses, incense and candles, where you have to completely clear your mind from everything to gain some sort of inner peace.

However it can be so simple and it has helped me so much in many ways, during my recovery process with CFS it has been invaluable.

Ways in which meditation has helped me:

  • Sleep
  • De-stress
  • Rest breaks

Continue reading →

What pacing is for me ?

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Pacing is a word that when you have CFS/ME you become very accustomed too and a bit sick off if I can tell you the truth.

I was also a bit confused about what it actually entailed, knowing it was something I should be doing but not knowing what it actually involved.

But it turns out that what I have been doing using a modified version of Toby Morrison’s credit system, as I have outlined in a previous post (link), is exactly that all pacing involves is keeping a track of your actives and trying not to use all your energy all at once just because you feel good at the time. Yes I am doing something right 🙂 .

 

Best random find of my life- Intro to Toby Morrison Golden Rules for CFS

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I am a big fan of you tube, especially when suffering from poor concentration watching a video review etc is so much easier than reading a long webpage.

At the time I was watching a video on ‘Tapping’ as someone had recommended it to me as a way of getting more energy / concentrating. ( It didn’t really get it to be honest, but everything is worth a shot’ after it finished in my recommended videos section was this video and it really changed my life:

Continue reading →

Nutrition

Posted in CFS Tips, Other GF Tips by

I had read time and time again that getting your diet right had helped many people suffering from CFS. And it kind of makes sense its the food and drink we put in our bodies that gives us sustenance and energy, so if you get the balance right there its bound to make a bit of a difference.

Nutrition etc isn’t an area that I had a lot of expertise in so I decided to see a nutritionist. It is important to find one that knows about CFS/ME otherwise  I don’t there isn’t an awful lot of point.

I found the website below particularly helpful, it explains a bit about CFS and nutrition but most importantly it enables you to find a nutritionist in your area that has a specialism in the area:

http://www.nutritionist-resource.org.uk/

Continue reading →

Acceptance then Action

Acceptance then Action

I really struggled to accept that I had CFS – I think its half because I wanted to be better straight away, which isn’t an option with CFS. But finally I started to accept my illness, and look for ways in which I could help myself, as I didn’t want to have wait until my appointment with the North Bristol CFS/ME Centre which was around 5 months away.

Don’t get me wrong I still have the occasional moment in which I think “Surely I don’t really have a debilitating illness, come on just snap out of it” but of course you can’t just snap out of it.

Continue reading →

The resurrection of breakfast

Posted in CFS Tips, Main Meals, Snacks by

It had always bBreakfast Smoothieeen drilled into me that “Breakfast was the most important meal of the day” but I had always ignored it in favour for that one last snooze or two in bed, and quite frankly I’m never that hungry in the morning.

After my diagnosis with CFS, I went to a nutritionist who helped me figure out the best foods to eat to try to relieve some of my fatigue, it was during this process I found out I had a gluten intolerance.

I worked with my nutritionist to come up with something that worked for me, as breakfast became even more important with my diagnosis. Continue reading →

Getting Diagnosed CFS

Posted in CFS Tips, My NHS Journey by

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.