What activity management means to me in dealing with my CFS/ME

I have had CFS/ME for around 18 months give or take, and I can no means say that I am recovered (still on that journey!) but what I can say is that my symptoms and my functionality has increased ten fold.

I have gone from being house bound and being off work at my worst, only being able to be out of bed for short periods of time and with the help of my partner…. to the current day where I am able to work 3 days a week have something that resembles a social life.

So what has helped this change?

No I haven’t taken a magic pill (I wish!) although I do take a variety of supplements .

The key is managing this condition in the best way you can.

Activity management has been so key to my recovery and that of many of my spoonie friends.

However there is no one size fits all with these conditions at all; everyone has different things going on in their lives, children no children, work no work, and the list goes on!

So how do you work out your ever so illusive BASELINE, one thing that helped at the every beginning was to categories everything I did as either: High, Medium, Low, Rest or Sleep (Something I was taught at the the North Bristol CFS Clinic – Link) Continue reading

A Reflection of my chronically ill 2014

Another year has gone by, and now is the perfect opportunity to reflect and build a plan for next year.

I think whether you are suffering from a chronic illness like myself or as fit as a fiddle it is really good to look back and reflect and have some achievable goals for 2015 (Link- Coming Soon).

So I have decided to compile a list of questions to help me review my previous year, if you fancy going through and doing this exercise I would love to hear your responses in comments or feel free to just put pen to paper 🙂

Continue reading

Redefining what exercise/movement with ME/CFS (NHS TiP Course pt3)

In my previous post : Benefits of Movement for CFS/ME (link), I talked about some of the positive effects that can come out of using movement/exercise to help elevate some of the symptoms of CFS/ME as well as increasing daily functionality.

But equally several of the group had done GET (Graded exercise therapy) in the past with very negative results, whilst most had had some sort of negative experience of over doing it on the exercise front, leading to a sever crash.

So if on the one hand we are being told that exercise is good for us but on the other from both personal experience and from things we have researched and read up on we know it can have some pretty dire consequences, it seems like we are stuck in between a rock and a hard place. Continue reading

The Rainbow in the Storm- Checking in with CFS/ME

Rainbow quoteLying on the sofa in PJ’s for the third day in a row might seem like a luxury to non sufferers and it used to be for me as well before I got ill. However my PJ’s and a cheeky hot chocy were accompanied by searing  pain, tingling in my arms and legs or at times the inability to even concentrate on the most mind numbing TV.

So my current stint on the sofa hasn’t been all that luxurious, the forecast has been filled with severe weather warning of: impenetrable brain fog, with pain showers throughout ranging from an annoying dull continuous drizzle to a full out thunder storm that brought a tear to my eye.

But though all the fog, the drizzle and the storm there has been a rainbow; evidence of the rays of my progress with this condition trying to burst through. Whilst these rays are not strong enough to banish the fog and the storms, the rainbow to me symbolises hope and makes me feel content and one might even go so far as saying happy with my situation. Continue reading

Toby Morrisons 5 CFS Pillars of Health (Toby Morrison UK Seminar Pt 4)

So in previous parts of the seminar, Toby talked briefly about what CFS/ME is and how and potential causes (Link), Toby’s Triangle of success: Survival, Accept, Adjust, Believe & Achieve (Link) and the effects of stress and mindset to recovery (Link).

All the above are great, but how do we get past the acceptance stage and start adjusting, how do we keep a positive mindset and hope if there is nothing we can do to help ourselves or we think we have no hope of ever getting better?

In most cases this simply is not true, there are things we can do to help ourselves, it may not mean recovering fully from CFS/ME but giving you access to a better quality of life. Continue reading

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

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 inspirational Martine Wright – How good can come from bad

Martine+WrightLast Wednesday I attended a huge corporate event which completely wiped me out but was defiantly worth it! (Link) During the day we heard from ex world leaders, got entertained by A listers, and whilst all that was amazing what really struck a cord with me was the speech that Martine Wright gave, she is such a true inspiration.

Who is this Martine Wright you ask? Well to be honest I had no idea myself when she stepped on stage, but still her story really stuck a cord and brought both tear to my eye and a smile to my face.

Martine was a high flying marketing executive busy wrapped up in her own crazy busy life, until the day on July 7th 2005 when she got on a tube whilst running slightly late for work, sitting reading in the metro about how London and just being awarded the 2012 Olympics.

What she didn’t notice or realise at the time was that the man sitting opposite her with his rucksack (full of explosives!) had intentions to cause mass casualties and disruption to London’s rush hour traffic, and he succeeded. Continue reading

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

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

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

Mental Illness- Invisible Awareness Week Day3

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