Tick Tock

Not one thing, not the other.  Not better, not as bad – depending on what timescale you use to compare.

Running ME Aware blog was tiring.  Sad that my posts have dried up along the with the malaise.  Gut feeling that change of direction required for effective change.  Catalyst, campaigner, smart media, PR stunts, legal action – not sure what.  May have to settle to back an organisation’s efforts.

Back on D-Ribose properly.  Gastric yuck has continued throughout regardless of D-Ribose intake.  Worried about continuining to pay for it when got a special offer with last restock.

Money I saved on suppliment restock last week went to Just Four Quid.  UK campaign to raise £1 million for ME Research and tissue bank.  Year long commitment to fund raising to give what ever I can when I’m able.

Did some more on my new painting.  Rewarding but sometimes physically tough.  Mostly enjoy being something more than just ill.  Others like having that something to ask after too.  Want to do some autobiographical work but tricky to find enough energy resources to fit it all in.

Spent ages finding lovely dress and outfit for friend’s wedding at end of May.  Now feeling fat and ridiculous.  So hard to change shape when daily care tasks leave me exhausted let alone exercise.  May settle for slightly smart and mainly comfortable rather than dress.  Need strategy to avoid getting photographed.  Maybe keep own camera in front of face?  Possibly wheelchair will make me invisible anyway?

Cat has hyperactive thyroid.  Now on meds.  Explains loss of weight, raging hunger, huge thirst and general cranky attitude.  Now I’m not the only sick one in the house.  But Growler has an extra patient onhis hands.  One can’t get to sleep often til early hours, the other can’t sleep through past 5am.  Poor Growler.

Proud of my Growler training for 140 mile (225 km) cycle ride in July.  Wants to raise awareness of ME/CFS and carers.  Asking people for 10 minutes rather than £10. To read an article or two, write a letter, sign a petition. His bike symbolizes how ME has changed our lives.  We started to ride together before I got really sick.  Symbolic for me too.  That can be told another day.

Having the usual internal wrestle with same old questions.  Do more, do less?  Push for treatment, save my energy?  Who am I?  What’s wrong with me?  Will things ever change?  What am I fighting for, should I fight?  And many more questions.

Being home alone in daytime while Growler works full time changing the shape of things. Only now starting to see it.  Not painting as much as before the full time job.  Consistently more knackered by the end of the day.  Feeling more physically disconnected from the outside world.  No longer able to pick best health times and go for quiet trip out.  Places are busier, opportunites reduced, the time slot takes priority rather than picking best health.  Turning down the chance for not best health is more difficult to do now the opportunities are less.

Highlights lack of other offers to get me out of the house.  For fun or for practicalities.  With the (small but siginificant) extras each day it’s more difficult to pick a good day and directly ask someone else to take me out.  The up side is I’m living in the moment.  The down side is I feel estranged from my past and my future is unknown.

Income has reduced.  Making some of my own money from painting but as said before rate of working has slowed.  Feel I need to paint more to make a modest income but I can only do what I can do.  Growler soothes my worries but I’m stubborn.  Money (a tight budget) stresses me. 

DLA is up for renewal in Autumn which stresses me.  In 2007 it was a bonus.  In 2009 it’s core income.  Want to be able to not rely on needing it, to be free from stress of the subjective assessment process.  But I apply because I cannot care for myself and have need mobility assistance.  There’s a reason I can’t raise my own tiny monthly allowance.  Never thought such a small amount of income would mean so much.

Thought I lost my friend.  That ME had left me being a crap friend and life had moved on without me.  She rang this week. Asked me and Growler to be her two witnesses at her wedding.  Just the bride, the groom, parents and us.  Gobsmacked and so moved that of all the many friends they have they asked us.  Maybe I am still a person and not entirely socially crippled by ME/CFS.

So good stuff and bad stuff.  But not one thing or the other.  Life in the grey area?

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8 Responses to “Tick Tock”


  1. 1 ashysheela May 21, 2009 at 9:16 am

    no time but to send a hug this morning xox

  2. 2 Nina May 21, 2009 at 12:52 pm

    Life in the grey area is sometimes white (all light — all colors).

  3. 3 Rachel M May 22, 2009 at 7:37 am

    I can safely say I understand how you feel…
    I’m quietly listening, my friend. 😉

  4. 4 Jozephine May 22, 2009 at 8:46 am

    “I feel estranged from my past and my future is unknown”.

    I know exactly what you mean.

    Keep holding on.

  5. 5 cusp May 22, 2009 at 10:51 am

    God these stuggles are so familiar. You put it so well (as usual) even with your more limited resources at the moment

  6. 7 Sherrie Sisk May 25, 2009 at 2:28 pm

    There’s a saying from some eastern tradition – I do so much reading I can’t even keep ’em all straight but this one really spoke to me. It’s something like this: you have to get comfortable living in the spaces in between. (Sounds like yoga. Probably. Yeah. Yoga.)

    That’s what chronic illness does to us, especially when it brings its good buddy chronic pain into our lives, too. They can dance on our neurons ’til dawn, get up an hour later and do it all over again.

    We can’t control them, the nasty little buggers. But we can – somehow (and I confess I’m still working on this myself) – refuse to allow them to force us into suffering because of them. We can refuse to suffer, yes, that’s it.


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