ChronicallyMe

It’s difficult to know if writing a blog to mark ME/CFS Awareness Day makes any difference.  Am I changing the world?  Does it have an impact?

Well yes, I think it does.  Because the key word for me here is awareness. 

I was reminded again this weekend, whilst chatting with my mother-in-law, of the ripple effect and that you don’t always need a BIG splash to have a wide reaching impact.

My mother-in-law was asking how I was and if I was noticing any improvement to my condition and saying how frustating it must be for me (having been largely housebound pretty consisently over the last 18 months).  She herself has severe rheumatoid arthritis and has been fighting her own chronic (and often invisible) disabilities for many years.  For a few minutes we shared the sense of frustration at not being able to ‘get on’ with things, of needing to change aspects of our lifestyles and attitudes to life.  Two women looking pretty healthy and perfectly normal, sitting chatting.

I realised that whilst she can relate to some aspects of my condition I’ve also learnt a lot about hers.  I now know that rheumatoid arthritis is more than just struggling to open jars and button clothes and something really old people get at the end of their life.  She battles with pain and fatigue, mobility and side effects from medication.  She’s had 2 new hips and 2 new knees and she was in her fifties when she had her first hip replaced.

In the same way as I learn through her experience she learns through mine. 

Slowly, drip by drip, me and my illness touch the lives of the people around me.  Sometimes it’s in bad ways because of the things I (we) can’t do or eat or go to and so on.  Sometimes it’s in positive ways because of the things I (we) laugh at, talk about, do together and so on.

As my mother-in-law, my brother, my friend, my neighbour, my ex-colleague, see ME/CFS in my life they learn a little more.  And in turn a small change in their thinking, their understanding, their knowledge is possible.  They carry that change with them and are able to pass it on to others.  They’ll be a little wiser the next time they see or hear about someone like me and I’ll know the ripple is out there.

My job is, I think, is to keep throwing those little pebbles into the water - by word and deed and by being.

Today is International ME/CFS Awareness Day 2008.

Read more posts at blogging for ME/CFS Awareness

Read more about my illness ME/CFS

I am a supporter of ME Research (UK)

“a national UK charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS) … aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME“

I stumbled on a toolkit for physician’s on the web site of Centers for Disease Control and Prevention (CDC) whilst researching for my RachelCreative blog post for International ME/CFS Awareness Day 2008 on 12th May (this coming Monday).

Within the overview I found some interesting bits that confirmed some things for me:

• US Doctors are supposed to accept that CFS/ME/CFIDS is a real physiological illness

“After more than 3,000 research studies, there is now abundant scientific evidence that CFS is a real physiological illness. It is not a form of depression or hypochondriasis. A number of biologic abnormalities have been identified in people with CFS, but how they contribute to the illness is still unclear.”

• US Doctors do have tools to diagnose CFS with

“Although there is no laboratory test or marker to identify CFS, there is an international case definition for chronic fatigue syndrome that provides a reliable diagnostic algorithm.”

What really blew me away was these statistics:

• At least 1 million Americans have CFS. This illness strikes more Americans than multiple sclerosis, lupus, lung cancer or ovarian cancer.
• Less than 20% of Americans with CFS have been diagnosed.

Most shocking of all:

• The annual economic impact of chronic fatigue syndrome in the United States is estimated to be $9.1 billion in lost productivity, not including medical costs or disability payments.

 Absolutely staggering.

The stastics and quotes are all taken from the CDC’s “CFS Toolkit for Health Care Professionals“. Sections quoted in this post are from the Basic CFS Overview (PDF file).

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.