Archive for July, 2008

Miscommunication: Transfer of Donkey

Watching the local evening news on the television yesterday evening, as usual with these posts I’m only half listening. 

The sports news turns to football (soccer for my American friends) and transfers (players changing to different club teams.

I hear the presenter say something about the transfer of a donkey.

But he actually said (Growler tells me) something about the transfer of a goalie (as in a goalkeeper).

Hmmm. That would make more sense.

Wasp Headache

I seem to have a headache thanks to a lost wasp. 

I am ever so slightly phobic about flying insects – particularly those that buzz.

So I’m sitting in (on) bed with the windows open (it’s so muggy today!) typing away at a blog post for Chronic Artists when I hear a buzzzzzzzz. Hovering right next to me, checking out my bedside table is a wasp.

I can’t remember the last time I’ve run that fast. I vaulted out of bed, slammed the bedroom door and padded into the hallway – heart pounding, panic stricken face.

Growler, in the room below, hears the frantic thud of footsteps and thinks someone has climbed in through the window. Well yes – they have! A wasp! A HUGE (tiny) angry (dozey) wasp!

Growler sprints upstairs with concern and a heroic attitude.

“Wa … wa … wasp” I manage to squeak.

Turns out Mr Wasp was waiting by the window for some kind soul (Growler) to sweep back the net curtain and let him outside. So easily dealt with.

Except now my little panic and running exertion seems to have triggered a bit of a thump in my head. Just goes to show you can’t always be in control of your pacing. Sometimes life (and wasps) happen.

D-Ribose – Week 14

Time for an update on how the D-Ribose plan is going. 

I’ve been taking D-Ribose for 14 weeks, along with 200mg of Q10 and around 500mg of L-Carnitine. I started on 3 x 10g a day for the first 4 weeks and ever since 2 x 10mg.

I take the first D-Ribose dose first thing in the morning and the second dose around 3pm.  Any later and it seems to add to my trouble with getting off to sleep.

After 14 weeks I can say that D-Ribose is not a miracle worker – at least it’s not an instant solution.  But I certainly feel a benefit.

I’ve described before how most mornings I feel quite wiped out when I wake up (not uncommon for ME/CFS). Half an hour to an hour after that first D-Ribose dose I feel less heavy, less exhausted.  Very slowly I am doing a tiny bit more as the weeks pass.  It’s very hard to measure and it’s such a tiny improvement I am sure only people who have experienced debilitating fatigue will recognise it as a cause for note at all!

I’m sorry I can’t quantify the effect for you. I know that sounds like a cop out.

But on days when everything feels heavy often the D-Ribose takes the edge off that.  By my second dose around 3pm on those heavy days I feel ready for the dose and it’s enough to keep the edge off until late evening. 

When I have done perhaps a little too much the D-Ribose offers little respite.  But the ‘payback’ for such exertions seems to last for a shorter time than before D-Ribose.  Perhaps a day or two to recover from seeing a friend on a better day instead of 3 or 4 days (or longer) as before.

So I also seem to have more frequent better days.  At least better in terms of feeling reasonably OK at rest during the main part of the day.

I have another 2-3 weeks of taking the high dose Q10. Or at least deciding whether I need to continue with this (rather costly!) suppliment for more than 4 months.  I do not know if the current problems with IBS, constipation (and adverse reactions to foods which previously in my ME/CFS have not been a problem) are connected to taking Q10 or L-Carnitine or even my body healing – OR if these symptoms are merely a new phase of my illness that co-incide.

So, as always, I am rather inconclusive!  But I thought I had better report where I am at – good, bad or difficult to quantify!

In case you did a search and arrived here other posts of mine on this that might interest you:

D-Ribose – Week 1

D-Ribose – Week 2

D-Ribose – Week 3

Around 1 month – Dangerous Days

Suppliments I am currently taking

Body Jangles

Yesterday Growler took me to the cinema. It’s the first time since 2006 when we went to see Casino Royale. Back then I was a lot better. Or rather I didn’t know quite what I was dealing with and to was prior to the big “you can do it” push of 2006 that resulted in me becoming much much worse.

Anyway we went to see the new Indiana Jones movie. I think I see a pattern developing!  There was quite the same high and lows of the Bond film but it was still a massive sensory experience.  I expected to feel quite drained afterwards but was ok.

In fact on the way home we stopped at Fradley Junction and went for a short wheelie walk along the canal in the glorious sunshine. It was pretty busy with suprisingly loud folks considering most had opted to go on a canal holiday – usually associated with it’s leisurely pace and peace.

When we got back to the car I felt pretty tired so we headed home rather than having a meal out as we’d hoped we might.

Last night at bed time although I was actually sleepy my body felt wired. I describe it as jangle-y – like I have vibrations in my muscles that kind of set your teeth on edge.  Earlier that day I’d had painful aching joints which is unusual for me. Anyway I managed to get to sleep, although it felt quite fitful and today where I had jangles last night there is a weariness instead.

The wired feeling may be con-incidence especially with those unusual aching joints.  Or maybe the excitement (and the sound and the visual stimulation) set me off.

So today I am feeling wiped and weary and like my limbs are a bit useless. But I’m still glad we went.  I really enjoyed it.  It felt good to do something normal too.  And it felt good to be on a date with my husband on a Monday afternoon when once we would both have been in offices waiting for the working day to end.

In other news Growler has organised a holiday for us and we go in just a couple of weeks.  Short notice will work in our favour this time I think as although in the post I am talking about struggling I am relatively ok compared to how I can be.  We’re stopping in Britain for our 10 day break – heading up to near Durham to explore some of the North East for the first time.  We’ll go via a short stop near the Yorkshire Sculpture Park which I’ve wanted to visit for some time.  Depending on how I feel this break may offer a chance to do lots of sight seeing (and photo taking!) or lots of peace and quiet – but definately a change of scene and routine for both of us.

So now I just need to pace as best I can for the next couple of weeks.  Not that there’s any guarantees of good health for the trip but I can hope!  I have to stop thinking about it as the excitement will wear me out!

Blurgh Pah Fffff

I feel “inbetweeny”. 

Not really ill, not really well.  Not really sleepy, not really awake. Not ready to get out of bed, not comfortable in bed.

There’s nothing sensible happening in my brain yet it seems stuffed full of snippets of thoughts that swirl around and never get sorted.

I want to listen to music but it adds to the brain swirl.

I want to be creative but I’m disconnected from ideas.

I want … something.

Let it be hormones.  Let it be lack of sleep. Let it be passing.

 

I just had that feeling the last 2 days that I’m killing time. Like a monkey swinging from branch to branch, I get the sense I am lurch from one milestone in the day to the next waiting for the time to pass so I can move on to a better day … please?  I stumble towards lunch knowing that means I am one step closer to getting out of bed.  I stumble on towards evening meal with my eyes set on going to bed.  I’m climbing into bed wanting it to be tomorrow already because maybe it will be a good day – and if it isn’t then it doesn’t feel like I’ve slept all night anyway.

It’s a passing thing I know it is.  I’ve had times like this before.  Like a petulant teenager wishing their life away.  I need to settle and to savour everything, especially as these inbetween days are not racked with great pain or discomfort.  Just a sense of being restless but being too tired to do anything proactive.  It’s a time to soothe the mind, sort the thoughts, search for quiet and calm … and try not to get irritated looking for it. 

You know it does sound kind of like ME + PMT = exhausted restless happy grump

Hmmmm.  And breathe …

T’is the Season for Books

T’is the season for books it seems.

I have six books I’d like to tell you about – including one of my own:

  • 366 Days of Me and M.E.
  • Violently Beautiful
  • Creative For A Second
  • The State of Me
  • Life Disrupted
  • Aurora Blues

366 Days of Me and M.E.

I just printed my first Blurb book (print on demand) of my year long daily self portrait project. It’s called 366 Days With Me and ME and I made it available to buy just in case it captured interest.  Read more on my art blog post.

Available from Blurb

Violently Beautiful

Tanya, aka RockstarVanity from Momentary Solutions has a beautiful Blurb book now available of her wonderful photography. Tanya is a freelance photographer who juggles her professional and personal commitments with life with ME. The book is called Violently Beautiful and you can read more about it on her blog.

Available from Blurb

Creative For A Second

A collection of creative works from people with ME all beautifully presented in this open publication available to view online.  It’s called Creative For A Second and you can see the book and find out more on the official web site.

Creative For A Second was born when artist and CFS/ME sufferer Kirrily Anderson began to notice the large amount of creativity amongst the CFS/ME community.

Seeing an opportunity to highlight this creativity and spread awareness, Kirrily began to contact fellow creative sufferers and after much interest decided to collate people’s artwork and experiences and put it all together in a book.”

Available online at the official web site www.creativeforasecond.com

The State of Me

NMJ (Nasim Marie Jafry) of Velo-Gubbed Legs has her debut novel published this month. It’s called The State of Me and draws on the author’s own experience of life with ME. The central character is a 20 year old student struck down by a mystery illness which leaves her debilitated and bed-ridden.

“She is eventually diagnosed with M.E, a cruel illness that she must learn to live with over the next decade. All of her relationships are tested and changed by her condition, but Helen s story is so much more than an account of her suffering. Far from it.
The State of Me explores the loneliness and chaos of one of the most misunderstood illnesses of our time, but also celebrates the importance of family, friendships, and sexual love.”

Available from Amazon UK and Amazon.com and I imagine lots of other bookstores too (ISBN 1906321051)

Read more about the novel and the author on her blog.

Life Disrupted

Laurie Edwards is a writer, tutor and blogger who tries to balance life with multiple chronic illnesses (PCD, bronchiectasis, celiac disease, etc). She has just had her book published Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. ISBN 0802716490.

Available from Amazon UK Amazon.com Powell’s Books or Porter Square Books

Read more from Laurie Edwards on her blog.

 Aurora Blues

Finally I’d like to mention the novel by my friend Nick Scott Donald called Aurora Blues. I helped out with some of the proofing and the cover design.  ISBN 190621042X

“Angels and acrimony; lust and loathing; joy and jealousy. These are all uncovered when Eve – a young woman on the verge of despair – is inspired by a powerful recurring dream to return to her old home-town to find her one true love. But it soon becomes clear that Eve’s old friends and neighbours are yearning for love as much as she is. Mother Nature and Fate are warriors in a powerful struggle between angels and demons, in a town where potent emotion simmers beneath sweetness and civility. But which side will win the struggle? “

Available from Amazon UK Amazon.com and other bookstores.

Eternal ME Questions

Ashy said it might be entertaining (really?) to make a list of all those eternal ME questions.

Please do suggest questions I have missed.

  • What’s wrong with me?
  • When did this all start?
  • Why am I ill?
  • Am I doing too much?
  • Am I doing too little?
  • When will I be better?
  • Will I ever be better?
  • Is there ever a cure, or only remission?
  • Is this all in my mind?
  • What name do I call this illness?
  • Why doesn’t my doctor / therapist / physio / specialist / employer / friend / relative understand?
  • Is this crash/flare caused by xyz or is it just random?
  • Does this medication help?
  • Do these suppliments help?
  • How can I be so tired and not be able to sleep?
  • Why do I sleep so much?
  • Do I feel better because I did xyz, or did I do xyz because I felt better?
  • Am I getting worse, better or staying the same?
  • What was I talking about …?

Fundraising


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.