ChronicallyMe

It’s pleasing and inspiring to read about Rockycha’s progress using a Chronic Fatigue Protocol tailored for her. 

Oh alright - I admit my first reaction was less graceful and more suspicious.  I know I know I’m a horrible person!  I think there are so many theories, “cures” and miracles out there for CFS/ME that it can make you more than a little jaded.  But I am genuinely happy to hear how much better she is doing these days.  It’s a true joy.

But this is no miracle cure for Rockycha - it’s been hard work to research and maintain good practices on the protocol.  Hearing mention yet again of D-Ribose (and Dr Jacob Teitelbaum) made me wonder if maybe it’s time to listen to what’s being said carefully and make up my own mind.

There are many supporters of D-Ribose as an essential and near wonder suppliment for CFS/ME sufferers.  It’s a special sugar that is supposed to deliver energy to muscles and is used by athletes.  See I like it already - it’s sugar and I’m an athlete … ummm … well nearly.

I’ve also heard CFS/ME sufferers saying it didn’t work for them.

Well I went ahead and ordered the legendary “From Fatigued to Fantastic” (nauseating title).  I’m skimming my way through the heavy stuff and thinking I may as well give some of this a go.  In particular this D-Ribose stuff the doc claims you will know within 2-3 weeks if it’s going to help or not.  Even though it’s expensive and some folks say it can make you pile tonnes of weight on I reckon I can afford a few weeks experimentation.  Dr Teitelbaum’s moustache unnerves me somewhat but tells us he donates all the money he makes on suppliments to charity and he gives you enough info to source treatments yourself.  Unlike some folks who say it’s my wonder suppliment or nothing!

I have a friend coming to stay with me soon so will wait until after that to start which gives me 2 weeks or so to start weaning myself off sugar :(  But let’s face it my body can do less snackage and sweet toothness regardless.

So I have my D-Ribose on order and a plan forumlating.  Yes, another one. 

But I’ve also been feeling a little better - a teeny tiny fraction better relative to my still sucky health and level of debility.  But most of you will understand how a fraction is tiny on one hand and a huge deal on the other.  And I like the idea of boosting the tiny progress it seems I am maing naturally (even if it’s very very slow).

Well, we’ll see.  At least I can say I tried.

I’m having one of those mornings when I feel like myself.  Like the me I know from way back.

My head is stuffed with daydreams and plans.  I’m deciding - in an absent minded way - what I might do today … do some painting, tidy up, do some gardening, get organised, whisk my beloved out somewhere … generally how shall I spring around bursting with energy once this groggy sleepiness is gone?

Except it’s not groggy sleepiness - it’s a low energy buzz.  My brain and soul is ready to go, my body is definately not.

Days like these are the dangerous ones.  The ones where it’s all to easy for me to push too hard, push past the tiredness like I used to with every other illness or pain I ever had and send myself crashing into bad, ill territory.

Days like these remind me that it’s not lack of motivation, desire, or want that keep me locked in incapacity - it’s illness that stops me in my tracks.

Days like these confuse the hell out of me.  I just feel like me - the me I know so well.  The me who runs at things with a flurry of intense activity to get it done.  Except I don’t have the resources for that now and I don’t know if I ever will again.

It’s almost a cruel blow - to feel so ready and yet be so ill equiped to fulfill the plans floating around my head.  I have to strive hard to focus my mind on the postive - that ‘feeling ready’ is at least a sign of hope.  I think.  Hope of … something.

I think … I think I might … might … be feeling a bit better. 

Certainly the unsettled feelings have settled a little - thanks mainly to Growler whisking me out for a couple of hours on Wednesday for light lunch.  There’s nothing to make you smile like watching ducks waddle about and we got to do a bit of that too.  I took some photos on a couple of my ever growing camera collection - which also made me happy.

I’m not saying I am well.  I’m still very ill compared to a normal person and compared to how I want to be.  I’m still limited, restricted and suffering from various symptoms (pain, exhaustion, foggy head, headaches, stomach problems, etc).  But I have managed to get out of bed before lunch (yes BEFORE lunch) four times in the last week.  Which is pretty blumin good for me.

I think having some early spring sun putting in an appearance has also helped.

I wanted to blog about feeling a bit better because I had so many lovely comments on my sad blog and didn’t want to leave you hanging.  I’m putting one (cold) foot in front of the other, I’m feeling more positive and I’m getting there.

See?  You knew I’d be ok didn’t you.

I was thinking I’d like to blog more here. If I can find things to say.  We’ll see.

I am struggling at the moment.  I’m at a difficult place in terms of mental health and emotional stablity.  I don’t know why.  I have a long list of possibilities.  I won’t bore you.

This isn’t a struggle in a deep dark bottomless place or even on the edge of one - so breathe easy dear friends.  It’s just … I dunno … things feel a bit stuck.  Rationally I know I am in a good place physically and therefore mentals and emotionals should fall into place.  But there’s just something(s) rubbing that need sorting or soothing.

Having finally shifted that 2 month long virus my current symptom combo feels awfully familiar.  It reminds me of a time around Spring last year.  I don’t know if that’s a good or a bad thing.  I just know it feels like I’ve been here before (again).

My mental image (when talking things over with Growler) was one of a long Rachel shaped tube (something akin to a gingerbread cutter shaped tube). A cold, shiny, unrelenting and never flexing tunnel.  My body frozen into a rigid star jump shape being pushed along this tube by Growler.  Poor Growler - flogging himself to exhaustion to push me down this tube that never seems to look any different and never seems as if it will end.

Sounds a bit bleak eh?

Well my days right now are about soothing this hurt/angst/upset/grieving/tantrum feeling inside, trying to find some clearer ideas of the trigger(s), practising my good mental health routines and … well … finding a way through.  Which I will.

Sometimes the positive stuff is a frothy foam on the top of my days.  Sometimes I have to seek it out from the depths.  I know it’s there - it’s just harder work to touch it than it has been for a while.

I don’t know today if I am sad, or lost or just content but with a searching mind.

I’ve been absorbed this last week in a world of photography and cameras. Of wishing to capturee the world in moments - even though most of what I want to capture is beyond my own world of these four walls where I find myself day after day.

With a refocusing of the mind to catch up on reading blog posts and the removal of the distractions comes a dull ache in my heart that catches in my throat and flares my nostrils like I’m about to cry.

Is the ache there throughout the distractions?  Or is it soothed by the enthusiasm I find in other areas of my life where illness is not the primary concern?

Whichever it is, it doesn’t take a lot to find the same old questions and uncertainities - which need soothing all over again.  Questions answered, or at least quitened so many times before.  Who am I?  Why me?  When did it start? When will it end? Will I ever do such and such again?  Is this me forever? What is my value?  What is my purpose?  What is my role?  Why am I not like you and not like the me I know (or is it knew)?  Is this ache temporary?  Am I sad or just taking stock or is my brain letting me down again?

I’m OK.  I know I am OK because Continue reading ‘Sad, Lost or Content With a Searching Mind?’

The ME Association have published a letter from Liberal Democrat Leader, Nick Clegg MP, to his constituent about ME/CFS. 

Nick Clegg is critical of the NICE Guidelines and wants an independent scientific committee to oversee research into ME/CFS in this country.

What fabulous words from a politician:

“Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an ‘Activity Management Programme’ made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.” Read Nick Clegg’s full response

Thank you Nick Clegg!  I could jump with joy and hug you - if I wasn’t so exhausted

What a difference to the response I got from my local Conservative MP  last year when I asked for his support.

Admittedly I covered a lot of ground in my letter but I did ask him to read the report of, and lend his support to the findings of, the Parliamentary Inquiry into Myalgic Encephalomyelitis (ME) which was chaired by Dr. Ian Gibson.  Also to support bio-medical research into the condition (the Gibson Report found an inbalance towards psychosocial research funded for this condition by the Medical Research Council).

He forwarded my letter to a minister in the Department of Health and passed the buck entirely:

“I have now received a reply to my letter from the Department of Health regarding Myalgic Encephalomelitis/Chronic Fatigue Synrdrome.I am enclosing the Minister’s reply, which, as you will see, sets out the current situation with regard to this issue and comments on the points you raised.The website address, on which further information can be found, is also given in the letter.

I think I should have another go at educating my MP and enlisting his support.  Best keep my letter short and simple next time I think.

Activism is a sometimes bit too active for me and ME.

UPDATED: Nick Clegg’s letter was a response to a letter writing campaign from ME Association members