Archive for the 'HardSimpleThings' Category

I Want To …

**Mini Rant Alert**

Things I want to do but cannot do for various reasons relating to stupid M.E. despite them being semi-plausible…

Want to (in no particular order):

Have a bath, be clean & dressed everyday, eat whatever I fancy, exercise, sleep sleep sleep, go out somewhere for fun, get a haircut, earn some money, make some art, take my Holga out, meditate, have a chat, do a little housework, have sex, finish putting the front room curtains up, prune shrubs in the garden, lose weight, swallow my pride, diversify my work, do nothing whatsoever.

Not to mention the biggies that are less plausible right now…

Biggies (in no particular order either):

Care for myself, start driving again, be able to go out independently, get a job, buy a house, have a family, get fit. Be well.


There’s nothing like having a flare/crash/relapse (whatever this is) to get you thinking about all the things you can’t do.

It’s not proving very useful to plan what I could do if I felt better when I’m not feeling better.  But I can’t seem to switch those kind of thoughts off.  I’ve still not learnt now to deal with dips well it seems.  In fact it seems I’ve still not accepted I am even in a dip.



Low Energy Reserves


disability shadow

I’ve been on low energy reserves for weeks now and it’s starting to get a bit frustrating.  I have work to do and clients waiting.  I am doing little bits of things – watering my plants, feeding my tomato plant, a bit of baking – but it’s very wearing very quickly.

I tried to do some painting a couple of weeks back, thinking perhaps I was low motivation not low energy.  I got a little bit done but soon I was messing up really badly and realised just how exhausted I was.  Still not sure how I’m going to fix the mistake I made but I’ve been too knackered to think about seriously.

Paul says I shouldn’t underestimate what effect our holiday had on me as we did stuff everyday – more stuff than I had done in at least 6 months before.  Plus the hot weather has an effect.  Plus hayfever does too for me.  But I feel like a bit of a failure for being so tired day after day and not being able to kick the exhaustion.

beside the seaside

I still maintain that the LDN is helping.  Although it’s hard on days like these to see that is when I feel so wiped.  But I suspect without the LDN things would be very bad indeed.

Really I should be used to going with the flow on these things.  No point trying to force it when the body says no.  You just lose more by pushing it.  But I feel riddled with ME and I don’t like it.  Goes to show that the LDN really has been boosting me more than I realised.

It could be this latest downslide is due to being back on eating wheat, despite testing negative for celiac.  When I started eating wheat everyday again in prep for the blood test I started to feel sluggish.  I don’t know if my body got past that or whether sluggish became part of my normal everyday parameters.

So I have to kick wheat again.  Hard now I’m enjoying all that wheat has to offer.  But if it is contributing to the knackeredness there’s no question of the benefit of sacrficing lovely tastes.

i'm reading grave sight

I’ve started reading again.  I wonder if the reading is contributing to the exhaustion.  Small things can add up and even mental stimulation is exertion.  But I do find even when the body feels wiped at the moment I can read a bit of an easy fiction book.  So it’s hard to know if that it turn is making me knackered or a welcome distraction from it.

my garden 'relaxer'

What I do have is my chair for the garden in which I can recline.  I can be lying down (just about) and supported and secure at last.  I decided to look at it as an investment of disability equipment and paid a bit extra to get a better quality one with a super squashy cushion and sturdy frame.

The only problem is I’m struggling to give in to relaxing.  A lot of the time all I want to do is eat or sleep.  So my auto response is to get busy to prevent me from sleeping in the daytime (something programmed into me when I was very young I think and so hard to break).  As a result I find myself wiped and restless at the same time.  I need to relax but I want to pace.  Of all the times it should be easy to let go and nap *this* should be the easiest time to do it.  Sigh.

Lurching, Lumbering & Surviving

I’m still struggling with the lingering effects of this cold/virus/bug.  I’ve been in the can’t-quite-shake-it-off stage for 2 weeks now I think. Sigh.

Managed to get a  bit of work done but that, combined possibly with the LDN leaving me a bit low energy, is impacting on my ability to DO.

Good news is that now I have my DLA award in place I can afford to pay my brother’s fiance (the clutter busting angel) to do a couple of hours cleaning each week.  She did her first session this week and she’s made a big difference to a lot of grime and dirt.  I expect it will take a few weeks before she’s gotten throught the backlog and is able to get into a routine where she can keep on top of things.  But it’s already loads better.

It’s Easter weekend, meaning a long weekend off work for Growler.  Seeing as he is still struggling to shake off The Bug too the plan is for lots of lazing and chocolate. 

I did manage to implement my plan to get my photos taken for my driving licence renewal. Than god they gve me nearly 2 months to organise myself!

Yesterday I had an assisted bath so today I could look half presentable. 

Growler drove me to the train station where they have a photo booth.
20100402 lichfield train station lens flare

Crazy lens flare and distortion from my mobile phone!

Got my pics taken. Urgh passport photos!

20100402 photo booth pics

A quick stop off by Growler at the supermarket for supplies while I waited in the car.

20100402 waitrose disabed parking

Then we drove back past a couple of houses which are up for rent – one we are waiting to do a viewing on and the other we’re not sure about as the area is not so great.  Nice little house but still not sure about the area having driven around a bit.

Nice to be out and have a chance of view. And did I mention the sun came out?  Lovely.

Now I’m knackered and hoping to  have a need to move from the sofa for most of the rest of today!

DLA Delay

Right I gathered my courage and rang the DLA helpline. Now they recieved my application on 6 Nov 2009.  They wrote to acknowledge it on 17 Nov.  Then they wrote on 29 Dec to apologise for not having given me a decision and I haven’t heard from them since.

So I was on hold for a good 15-20 minutes waiting to speak to someone due to high volume of calls. This in itself might be a clue.

When a lady finally answered she was kind of quiet on my phone and mumbled something which, flustered, I assumed was asking for my reference number as that’s what it says you’ll need to state on the letter.  But no, she said in a rather patronising and fed up sort of tone “The … LAST name … of the customer … you … are …calling about”.

Well once she’s asked me lots of security type questions and had my records up she thawed a little.

She can’t tell me why I haven’t heard anything since the end of December or why there’s been a delay because “that’s with the Decision Makers”.  But she could tell me that in the last few days they’ve requested a GP’s report.  This has me a bit gobsmacked because last time I applied they requested that within a week.  This time it’s taken 3 months. Yikes.

So in a way it’s bad news because it’s going to take a while longer yet to get a decision.  But in another way it’s good news because it’s not like they had already turned me down and my letter got lost in the post (paranoid!).

Hope my doc still has her copy of my application after 3 months. But she’ll most likely ring me if not because she’s nice like that.

Sounds to me like DWP have a massive backlog. Or my application got buried on someone’s desk.  I don’t know what that means in terms of how long I’ll have to wait now but at I know it’s still grinding it’s way through the system (like a glacier).  Well at least I’m used to waiting and moving slowly eh?

How Ill is Too Ill

Feeling shattered. Most week days mornings since I changed my amitriptyline dose to 30mg I’ve felt utterly shattered in the mornings.

My optimum sleep seems to be currently 11 hours. Growler has to get ready to go to work and try as he might I stir as he gets ready. Typically 9 hours sleep.  Which should be enough but just isn’t. I’m also aware that if I roll over and attempt to go back to sleep the breakfast he so carefully prepares for me will be past it’s best by the time I’m ready for it.

The time I should be still asleep I’m awake and feeling shattered and then it’s seeping into my mood and attitude for the day ahead.  Because I really don’t feel like it’s a day when I will be able to get anything done and everything seems sort of pointless.

I am reminded of all those awful mornings when I would wake and need to get up to go to the office.  Reminded of thinking, and often saying, “how ill is too ill to go to work?”.  Because I’d gotten to the point when I never felt well or energised or refreshed despite a good sleep.  For a long time I thought it was stress and unhappiness with my job.  A large part of it probably was.  But sneaking in alongside that was the fog and fug of ME/CFS.

There was a time when I knew that this fug meant stop in bed, don’t go to work.  Rest, relax and look after yourself.

Now the fug is there, to a larger or lesser degree, every day.

Any other month and I’d be embracing do nothing except tend to yourself, soothe yourself.  But I’ve got this pressure to finish a painting which I haven’t managed to agree a drawing of yet.  My first attempt fell way short as far as the client was concerned.  I find myself gripped with fear and not quite knowing how I’m going to capture what the client wants.  If I can relax then maybe it will just come.  But the fatigue presses heavy on my body and my soul.

So, I must gather myself and focus.  And all I can see is “how ill is too ill to not worry about this thing today”.  Which doesn’t help when I’ve had 4 days pass of not worrying about it and find the deadline getting closer with the limited doing time getting less and less.

I’m not feeling particularly gracious about a limited life with ME/CFS today.


PS: Oh thank goodness – it could be my hormones making so grumpy and moody. Time to dose up on Evening Primrose and see if a miracle can occur.

Clutter Busting of Self Image?

My Clutter Buster angel came round for another session this afternoon.  I was not looking forward to it as we were tackling the front room which is piled high with mostly My Stuff.  Art stuff, book stuff, wedding stuff, camera stuff, might be useful stuff and more.

I almost didn’t want to do it.  Was it shame?  Shame of all the stuff I’ve accumulated? Shame of saying “actually that piece of cardboard is really important”.  I don’t think that was the major factor.

It was in fact much more familiar.

Do I keep this book on growing your own vegetables or do I get rid of it?  Because I’ve never used it.  But I might one day.  Except I have ME now and I can’t even do a spot of light weeding let alonemake my own kitchen garden or dig potatoes.

Do I keep this badminton racket?  This badminton racket I used to use.  But now I can’t because I have ME/CFS.  But I might get better and want to use it. 

It’s the same over and over.  This *thing* represents who I was, possibly who I’d like to be again, but not who I am.  Do I get rid of it because I’m not that person now or do I keep it because I might be that person one day?

Well what K, my Clutter Buster Angel, said makes it all a bit better.  That if (when) you do get better it would be lovely to be able to go out and buy the badminton racket knowing you’re going to use it.  This makes it easy to let go of the stuff.

Letting go of the emotional attachments is a little trickier but will come with time.  Accepting I am not that person anymore is something I thought I had pretty much dealt with. But there’s still things to work on.  Still things to accept and let go of.  And maybe the physical process of clutter busting is actually helping the emotional aspects of letting go too.

It’s not a surprisingly relevation.  It just caught me off guard. 

Self image and identity are things I wrestle with still.  In my head I see myself as the thin girl I once was but trapped in a overweight  flabby body. There’s also a healthy girl in here waiting to bust out.  If only I could get ME/CFS to bend to my will.

Fireworks Fizzle

Wouldn’t it be lovely, I thought, to go to a bonfire this week and see a fireworks display? (Bonfire Night, Guy Fawkes and all that).

Then I remembered 4 or 5 days have passed when I haven’t felt up to having an assisted bath.  How am I going to be up to going out, in the cold, surrounded by lots of people and noise and stimulation, when I can’t even manage to plonk myself in a bath and be washed?

I suppose it’s because fireworks are something I can watch and enjoy, passively, along with my husband and others.  I want to be bundled up, wheeled out and shown something outside of the everyday.

But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.

I’m wishing to go out for a meal, or just eating anything I want to just for one day.  Can I just have normal stomach and bowels for one day please.

I found myself daydreaming this week about what I would do if I was 100% recovered right now.  I saw myself doing so many things and the more I did the more I wanted to do.  Drive to my mom’s and do all those jobs that need doing, drive to my dad’s and help him lay that terrace and do all that DIY he can’t do right now, spoil my husband, clean my house from top to bottom, look for a job, catch up with friends and family, paint and sculpt all day long, make love.

No wonder my mind is whizzing with a hundred different thoughts yet I lack the oomph to make any sense of anything.

Do I cope well living with ME/CFS? Maybe.  Do a thousand things never happen and everyone just has to live with that? Yes.


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
New stuff is added all the time.