ChronicallyMe

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).

According to Dr Teitlebaum in his “From Fatigued to Fantastic” book you should know within 2-3 weeks whether D-Ribose is going to be of any benefit to you.  That means that although it’s an expensive suppliment you only need buy one standard tub in order to find out if it works.

I’m not doing star jumps.  I’m not suddenly feeling 10% better than I was before D-Ribose.  BUT I can definately feel a benefit.

This last week I’ve felt really wiped out, like someone has wrung me out of all my energy.  I wake in the morning feel more exhausted than ever.  I look at my arms and wonder how I’m going to get them to do anything today.  Then Growler asks if I want a cup of tea (peppermint of course) and I suddenly remember II’m about to get my first D-Ribose of the day.

WIll it work today?  Surely not because my arms are so weak and I feel so utterly devoid of energy.

I reckon within half an hour of that first cuppa with my 5 mg D-Ribose dose in the limp arms are doing what I ask of them and I’ve forgotten how utterly rubbish I felt when I woke up.  It doesn’t give me enough energy to get up and do anything different to my normal routine but it definately lifts some of the weight pressing down on me - it definately gives my battery a little trickle of a charge.

I figure that hopefully this means it’s also giving my body a little boost to fight whatever infection, inflammation or thingymabob that ravages my body under this CFS label.

So I’ve ordered more and I plan to continue using it for the forseeable future.  I’m reluctant to move the dosage down to two 5mg doses a day just yet especially as I’ve introduced additonal nutritional suppliments slowly after icky gastric problems a month ago.  So I’ll bend the rules and stick with three daily doses for the next week and then go to two a day.

The only bad side effect seems to have been I’m not sleeping very well.  It’s taking me around an hour on average to get off to sleep, I’m having vivid dreams and am restless through the night. then wake up feeling heavy and dozey and actuallly - ready for bed!

This could be a side effect of the D-Ribose or could be another new/revisited symptom in my ME/CFS wheel-of-symptoms.  I seem to also have faulty cognitives this week (mainly showing in mixing up words and mumbling internal thoughts out loud).  Plus my glands are aching for the first time in months and months.  Sigh.   Tender glands in my neck where one of my most prominent symptoms back when this bout of moderate/severe ME kicked in.

Anyway - good news about the D-Ribose so far.  Hoping to see more progress over the coming weeks but even the tiniest of boosts feels significant to me!

Following on from my week one report my second week of D-Ribose continued in the same fashion.  Notably a gastric/IBS flare up with undecided cause.  Being restrictive in my diet seems to have paid off and the flare eased in the latter part of the week two.  I’m still walking a knife edge with the gastric stuff though.

I was really uncertain whether D-Ribose was having any benefit at all.  After my initial rush/high in the first two days it was hard to assess it’s benefits if any.

Then on Saturday (2 weeks from my start point) I had a busy day … meeting friends for lunch (which was so much fun we talked for 3 hours), then on to my dad’s to deliver some things and have a chat over a cup of tea (for an hour), then to my mum’s to unistall her anti-virus and re-install new anti-virus (her PC is so slow this took nearly 4 hours!) plus chatting and cups of tea.  So, after setting off just before 12.30 for lunch we got home around 8pm.

By 4pm I was asking for my next D-Ribose a bit early as I was feeling that exhaustion edge slipping in.  The D-Ribose didn’t magically make me ‘normal’ but it definately gave my body a boost.  We’re talking a kind of high like a sugar rush - it feels much more measured than that.

The same again on Sunday as I felt totally smashed by the previous day’s activities and utterly wiped out.  The D-Ribose definately helped boost my body and my energy levels.  I awoke with that limp arm feeling - one of those times where my arm droop after a few seconds of holding anything.  Where weakness ceases the muscles within seconds.  Not long after my first D-Ribose dose was taken that weakness was significantly better. 

This was the kind of day where I may have ended up staying in bed all day (which is rare but sometimes neccessary).  But by mid afternoon (two D-Ribose doses down) I made the move downstairs and absent mindedly found myself stopping off on the way to gather a couple of sketchbooks.  I was tired by the move but the point is I know it was a lot easier than it would be without the D-Ribose.

So I am now conviced that D-Ribose is having a positive and noticeable effect on me and my CFS/ME.

The only issue I haven’t resolved is the trouble I am having sleeping.  I do have problems from time to time but the last 2 weeks I have consistently struggled to get off to sleep.  I tried taking my doses a little earlier as I wondered if it is the D-Ribose.  I may have to try taking the doses even earlier in the day and closer together. 

Typically after 4-5 hours I have felt more fatigued and ready for my next dose.  I have been taking it at 10am, 1pm and 5pm leaving 5 or more hours until bed.  And I do struggle more with the exertion of moving to bed than I have during the day.  But then I lie awake for an hour or more.  So a tweak is needed perhaps.

I am meant to take 3 doses for the first 2-3 weeks.  I am taking it for 3 weeks but I may extend that to 4 weeks as I will not begin taking my 200mg of Q10 until today. 

All in all it’s a positive report.

As promised I’ve started taking D-Ribose and implemented my plan of action.

I’ve been taking daily three 5mg doses of D-Ribose for a week now.  I also introduced 200mg of Co-Enzyme Q10 and 500mg of L-Carnitine daily on top of the key suppliments I already take. 

Two weeks ago I started making (even more) dietary changes to target my IBS problems following advice on helpwithibs.com - mainly to be stricter in avoiding dairy, red meat, chocolate, egg yolks, and carbonated drinks (having already reduced my dairy intake and spurred on by having terrible gastric problems after switching to scrambled eggs for breakfast).

The first two days of D-Ribose I could feel it having an effect - giving my body a boost and lifting fatigue levels.  This came after a “good” week where I had been out a few times and had company for a few days.  I was at a low ebb and the D-Ribose felt magical.

Then on day 3 I experienced some kind of gastric flare up due to … I don’t know what.  Certainly D-Ribose is not supposed to have any side effects other than a risk of hypoglycemia and possibly loose bowels (definately not my problem!). 

Having felt extremely naseous with the anti-oxidant N-Acetyl Cysteine in the past I stopped taking my one of my new suppliments Q10 just in case.  I’ve had L-Carnitine 500mg in the past without problems so have persevered with it for the full week.

So on day three I felt as exhausted as I would have typically after the previous week’s exertions and without the D-Ribose.  Am I getting the kick start I was promised?  I’m not sure yet.  But I’m giving it time.  At least the 2-3 weeks that was suggested.

The gastric flare up has continued pretty much constantly - the only let off being Friday through to Saturday morning. 

I’m utterly miserable with near constant discomfort, heartburn constipation and wind with the occasional reflux.  And Continue reading ‘D-Ribose Action Plan - First Week’

On 12 May 2008 it will be International ME/CFS Awareness Day.

Before I had this blog, back when I used to talk about ME/CFS on my dizzysky blog I came up with some ideas of how you (and I) could do our bit.

This year I’ve tried to simplify things to one idea for my blogging friends. 

We will blog on (or around) 12 May 2008 about ME/CFS to raise awareness and join hands across the blogosphere (umm compile a list and pingback) whilst we do it.

So I’m enlisting your support to blog along with me from my art blog (it has more passing traffic than this one) and you can read the details of how to join in here:

http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008/

I have badges you can use if you want to on your blog.

This week’s latest symptom is terrible gastric cramps/pain which I’ve been experiencing in the evening and at night.  It’s been a while since I had a bad run of IBS cramps which is particularly annoying as my diet is pretty good at the moment. 

That’s not really what I wanted to talk about though. It’s just that yet another round of symptoms and pain made me think something startling.

Whilst I was huddled in bed last night hoping to squash the pain away I thought something that has never entered my head before … CFS has ruined my life. 

CFS/ME has trashed my life - totally.  It has robbed me of pretty much everything including hopes, plans and aspirations for the future.  I think of my mum’s quivering lip as she has (on several occasions) been close to breaking down at the thought of all the things I may never get to do (including having a family of my own).   She can only bite her lip, look away and ask in a quiet voice to change the subject.  And I see the pain and it’s like a manifestation of the pain I feel, the grief I feel for the things I may never have.  This illness ravaged my life and that of my family.

What’s really shocking though is that, odd as it may sound, I don’t remember having heard that thought in my head before - CFS has ruined my life.  This was the first time it had occurred to me even after two and half years of being ill.

I’ve felt immense frustration.  I’ve felt anger, despair, longing, grief and utter sadness.  I’ve asked why me, why now, how did this happen, when did it start, when will it end,  how will I cope, what if I never get better, what if I get worse, did I do something to deserve this?  I’ve said it’s not fair, I don’t want this, it’s not real, I am weak.  But I’ve never felt that this illness has ruined my life.

It’s certainly squashed parts of my life.  I’ve lost my job and am now unable to work.  There’s a list as long as my arm of things I can’t do, shouldn’t do, dare not plan for.  But I think I have managed to maintain a focus on what I can do, rather than what I can’t.  It hasn’t ruined my life because - well - I have a good life which makes me very happy.

The list of can’t-do is so large and overwhelming it really doesn’t help me to dwell on it.  What’s the point?  Far better to live the best life I can while I can.  Some days it’s easier to set aside the can’t-do list than others but a far larger proportion of my life is spent on the can rather than the can’t.  It’s a lot easier for me than for some as with the support of my husband he enables me to use a large amount of my energy on things I enjoy rather than having to fight to just do survival tasks.  I am very fortunate in that regard.

As soon as the thought “CFS has runied my life” flashed across my brain I realised that way madness lies.  To allow such a thought into my heart and carry it with me would be toxic and sure to drag my spirits down into a deep depression.  It would be too too easy to wrap this thought around me but it would suffocate me and really would ruin everything I have fought so hard for.

All of which makes me reflect and realise that I do a pretty good job of being positive.  Positivity isn’t a trait I tend to associate with myself - it’s not something that has, I thought, ever come naturally.  I’m the first to moan when I’m tired, hungry, unhappy or ill.  I hear myself and think of Eeyore.

But it seems I’m able to be a lot more positive than I ever realised.  Faced with the brutal reality of how incredibly hard it is to be largely housebound due a fatiguing, disabling, debilitating chronic illness I seem to keep my head above the murky waters (most of the time).

I think I also have a deep belief and hope that it won’t be like this forever and that one day I will get better.  I’m not sure if I will get back to my old level of healthy but I have a hope that I will and that I will be even healthier.  I am realistic about the prognosis but hopeful.  I am, it seems, just like the help guides I read last year said I should strive to be like.  Which for me is a huge relief and a cause for celebration. 

I have worried that I am too negative, that I haven’t learnt to accept my illness and my limitations, that I don’t push enough or that I push too much, that somehow fundamentally I am Getting It All Wrong.  When in fact I am doing a pretty good job.  I’m not a super human and my illness isn’t consistent or predictable - so there’s going to be a lot of ups/downs and swings/roundabouts and constantly shifting ground.  And that is ok too.

There is also a lot to be said for the embracing of a simple life with simple pleasures - a necessity deemed by chronic disabling illness but one which has many benefits to offer. 

Not everyone can stomach that silver lining talk.  How can something so devasting be a good thing?  Well of course it’s not what I would wish for - I’d like to be bursting with energy and making the most of a full, active life with few limitations.  What I am saying is that even with a life stripped to a bare minimum you can still find happiness.

For me thinking that CFS/ME has ruined my life has been a really uplifting experience.