Tag Archives: CFS Recovery

My Team Me- No man (or woman) is an island

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In my a previous post I talked about the inspirational speech that Martine Wright gave, she lost both her legs in the 7/7 bombings but was determined to bring good from the bad (Link), one thing that I wanted to delve into a bit more was her concept of ‘Team Me’ the group of people who help you in your recovery process.

The concept of Team Me really made me think, and I ended up mentally listing of all those who are so vital to my current recovery process, after all no man is an island after all (well woman in this case). I thought I would take the time to write out and share, as a small token of my gratitude. Continue reading →

The Ugly Truth of Bad Day with CFS… But its ok!

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Today has not been a good day in fact that is putting it quite mildly…But thats OK!

When I say I have had a bad day I don’t think people really get it, and before I was a sufferer of this ridiculous illness I wouldn’t have understood either.

Friends, family co workers and pretty much most people you come into contact with only see you at your best, where you grin and bare the pain or other symptoms.

I hate letting people know how bad it can get sometimes and the only one who really sees this is my partner, who really is my night in shining armour! This is for a variety of reasons from not wanting to seem weak, feeling embarrassed not wanting people to feel sorry for me or think of me as their sick friend. Continue reading →

An interesting afternoon at the CFS/ME Research Collaborative conference (Part 1)

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Earlier this month I was invited to attend the joint patient & researcher session at the UK CFS/ME Research Collaborative (CMRC) conference.

This conference sounded really interesting, I was invited to attend for free and it was literally on my door step so it was a bit of a no brainer. Continue reading →

12 messages you might not know that I use to keep positive – Day 5 Invisible Illness Week

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So today day 5 of the invisible illness awareness week I wanted follow on from my post yesterday; where I went through how having a positive mindset can have very real profound impacts on the body and physical health.

Yesterday I discussed various scientific studies and the science behind mindset on the body, but today I want to go down a different route and talk about how I personally keep on top of my mindset.

Wellness Wall Continue reading →

The Impact of Mindset on Physical Health- Invisible Illness Awareness Week Day 4

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Today marks the 4th Day of invisible awareness week and I thought it was finally time to finish I post I have been meaning to write for a long time.

CFS/ME is not a psychological illness! I am aware of this but for a long time I have had the avid belief that mindset can have an significant impact on recovery and the quality of suffers lives.

So I decided to have a little gander on the internet to see what I could find anything that could back up this belief of mine. I am not a sciencey person at all but  luckily there are loads of them out there in the world, so what to they have to say? Continue reading →

Mental Illness- Invisible Awareness Week Day3

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To mark day 3 of invisible illness awareness week, I thought I would talk about mental health.

Something which I do not think is hard to believe is that around half of people with CFS/ME develop depression in the months or years after their illness starts. Whilst CFS/ME is not a psychiatric illness, it appears to be a physical illness that leads to depression. Continue reading →

30 Things About My Invisible Illness You May Not Know – Invisible Illness Awarness Week (Day1)

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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 →

My NHS experience with CFS – Part 6 (1-2-1 Fitness)

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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 →

My NHS experience with CFS – Part 5 (1-2-1 Phased Return to Work)

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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:

  • Seminar One covered: Activity management, CBT, GET (Link)
  • Seminar Two- Pt 1- Rest and Relaxation (Link)
  • Seminar Two- Pt-2- Sleep and Stress Management (Link)

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 →

Social activities: Hell Yeahs, Compromises & Concequences (Cinderella Syndrome)

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Once I started to feel a bit better so was physically able to go out and socialise with friends easily (going for a coffee or round theirs for dinner etc), I started to take more notice of the slightly bigger social events, ranging from a friend’s birthday to a formal ball etc.

These events would defiantly rate a whooping 60-70 of my daily 100 credits, so would more than likely take me over my credit limit, and would also involve alcohol. (Talked about credit/pacing in previous post: Link)

Whilst these events would push me over, I still built them in to my weekly planners, as at least it enabled me predict when I was likely to crash, and I could really think ‘IS IT WORTH IT?’. As Toby says in several of his videos and I love this :

Think to yourself is this event a HELL YEAH? If yes go out do it live your life, if not learn to say that important word NO!

Continue reading →