Archive for June, 2008

Dangerous Days

I’m feeling not too bad at all.  It’s dangerous days.

I’m still tired, always tired.  But … not too bad.  Well yes my IBS is still hanging in the balance but a little better. But I don’t feel – overall – too bad at all.

Friday I met a friend in town.  We talked and had a drink and went out for dinner.  I walked (not very far) from cafe to bar to restaraunt.  In the morning I felt zapped.  I had my D-Ribose, got washed and dressed, headed out with Growler to feed a friends cat a few miles away.  By lunch I was tired but I wasn’t crashing.

My friend from Friday had made a weekend of it and came to mine that afternoon.  We talked and just sort of hung out.  We played with the cat, she dug some weeds in the garden for me and planted a flower in the garden I’d had in a pot for a year and not managed to plant myself.  I was tired but not too bad at all.  Second dose of D-Ribose of the day and, well, I stayed tired but ok for the rest of the day.  My brain slowed a little in the evening but it was manageable.

Today, this morning, the next morning I feel … well, tired, but not too bad.  I find myself suspicious.  I’ve read a lot of blogs and forum messages of people with ME who say “I think I might be better – hurrah” and then a week later have crashed again.  So I’m trying to take it slow and steady.  Not that I am doing a lot more than usual – just enjoying the not feeling crushed by fatigue thing.

It’s been 9 weeks since I started taking D-Ribose.  I definately feel a benefit although it’s not a miracle worker.  My gain would be so tiny to a generally healthy person it probably wouldn’t be considered a gain.  But it’s my measure that counts in all of this.

I’ve also been taking 500mg of L-Carnitine and 200mg of Q10 for over a month.  Is it helping?  I have no idea.

I do have a sense that I am physically capable of doing more.  That I can gradually and carefully start to build my strength.  Start to walk a could of minutes a day and build it up very slowly – start to use my muscles and get a bit stronger.  That whilst I still get tired, still get IBS, still get migraines, still get sore glands, still get aches – that I am able to be a little more resilitant to these symptoms and not push them beyond manageable levels.  And that moving and gaining strength could help ease some of these problems.

Now is that just applying a “normal” healthy person mentality to getting well?  Am I thinking like I always did before ME that you work to get better?  Am I tricked into thinking in old ways about an illness which isn’t something with a linear recovery or progression and I know doesn’t play by the normal sickness rules?  Or is this sense my body telling me what it needs – just like when I crave certain foods it seems to be because my body needs the nutrition?

What it feels like is that I’ve toddled along in my usual routine and levels of (non) activity and whilst I haven’t been looking – over the past month – my body has gotten a little better.  But because I haven’t been using those extra teeny tiny increases in capacity, looking back it seems a larger measure now.  Now large isn’t really large – it’s the difference between getting out of bed at 2pm and not 4pm.  Actually it’s feeling I may be able to get out of bed at 11am – or earlier – and that hasn’t been the case in the everday for maybe a year.

I don’t think I can know the answers right now about what I can and can’t do and what it might be or not be.

I think the only sensible thing to do is to keep trying and perhaps gently increase my activity levels very very slowly.  This means a new phase of determinitation and grit not to just attack things head on and whizz around in a flurry of activity.  If I have a migraine onset or an IBS flare do I stop?  Or do try again tomorrow?  Or do I keep gently pushing?

It’s those eternal ME questions I think.  It’s just that this is the first time since I’ve started coming to terms with this illness that I’ve started to see a real improvement and because I am now more concious I want to try and get it right.  But who can really know what right is?  So I just have to try.  Or not try.  And aybe the results will be the same whichever I choose.

And now my head is starting to hurt from writng this post and I wonder whether I have really made any improvement at all!

Miscommunication: Wimbledon Tennis

Not listening properly to the tennis on the television I heard …

Umpire: Fifteen – Pudding

I think it he actually said “Fifteen – Forty”.

Bowels in Polite Society

Now I’m sure I have a couple of readers who can advise me on this question.

How does one refer to being ill in one’s bowels in polite society?

If I have a headache I can tell people that.  If I have a stomach ache I can tell people that.  If I have cramp in my leg I can tell people THAT.  If I have an infection in my ear I can tell people THAT.

So if my bowels are spasming … how do tell people that without using the B word?  Or am I just not supposed to tell them?  Am I even living in a polite society!?  Humph.

Why my stomach and my bowels must bicker so I do not know.  I hope they can kiss and make up with the rest of my body soon.  I like it better when they are quiet and peaceful and getting on with their work happily.

M.E. Stops Play

No watching Shakespeare in the Park for me today.  An M.E. flare up distrupts the day.

Migraine, bowels playing up, stiffness in shoulders, swimming/ringing/thick head and feeling like someone has wrung me out.  Not getting off to sleep until 2.30am (4th night in a row) and therefore not getting enough sleep either.  Exhaustion pulsing sharply through the centre of my body into a dull roar by the time it reaches my finger tips.

Plus a morning of rain means the park/woodland where the play is on will mean transporting me in my wheelchair a soggy, sinking affair.  Not to mention sitting in the cold damp for 2 hours or so.

Sigh.

Growler is en route to fetch mom over to our house.  I wonder if she will still go and see my brother in action in the play.

It’s times like these I want to push through and show a resilient face.  Not reveal the struggle to my mom and act as normal as I can (all things considered).  But there’s just a little too much pain and too much exhaustion to fake it today.  Faking it will only make the following days even worse – and I don’t want that.

So whilst I imagine it will be difficult to know I can’t go out today because of M.E. – in reality this is just one of a typical kind of day for me and my M.E. life.  Sitting in the garden one day, crumpled and feeling sh!t the next.

 

 

Pins and Tucks

Losing a little bit of weight is good.  Very good.

Having to use safety pins to hold up your new trousers … effective but not so celebrated.

This Week in Keywords

Dad birthday. Visit. Both brothers. Fun.

Bath. Fluffy hair. Clean. Good. Tired. Happy.

Brother’s girlfriend. Tea. Chatting. Relaxed. Good. Happy.

Dentist. Filling. Anxiety. M.E. crash.

Woken up. Noisey. Workmen. Grumpy.

Insomnia. Short sleeps. Tired. Annoying.

Photographs. Developed. Good. Happy.

Blog ring. Artists. Chronic illness. New blog. Set up.

Blog reading. Commenting. Replying. Email.

Forgetful. Aches. Thirsty.

 

AND COMING SOON:

Watch. Shakespeare. Outdoors. Brother acting.

Mom. Computer. New RAM. Install.

Friend. Meet. Lunch.

More photographs. Blogging.

Haircut. Possibly.

Write sentences. Maybe.

 

 

 

Paddle Power

Growler is off to learn how to canoe in Wales.  This day long course is his birthday present from me.  I hope he enjoys it :o) 

I wish I was going canoeing with him.  Part of me reckons even if I was fit and healthy I would wimp out.  But as it is I am quite envious of a day paddling serenely down river.  Maybe it’s not serene when you’re learning though.

When I was in my teens and visited my dad every other weekend, sometimes in the summer, we’d take out a rowing boat at Walsall Arboretum.  I loved to row.  I loved everything about it.  The wooden rowing boats and oars, the slush of the water as the boat skimmed by, the creak of the oars with each stroke.   The practiced art of steering the boat to the jetty by adjusting the oars. The slightly damp wooden bench seat in the boat.  The ducks hiding under willow branches. The talks with my dad in the middle of a lake (well, large pool really), the tales of his youth, the chewing over of life and the universe and the soft pressing of the creases in our fractured relationship.  The wobble of the boat as you stepped in and, once time was up, out again – usually with a strong young attendant to take my arm.

But now – no paddles for me.  Not if you want to actually go anywhere rather than just drift.

So while Growler learns to paddle I’ll be with my mum.  Yes, it’s the turn of my 64 year old mother to care for me.  It doesn’t seem quite right.  I was always the one to do the practical jobs for mum.   Now we can both sit on the sofa and be annoyed in unity at all the little jobs that need doing ;o)


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