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.

Mental Rental

Well I’m considerably less stressed and anxious than I was at the beginning of this week. 

But I am facing the prospect of having to move house.  A lower rent would be great but mainly a house with lower fuel bills would be a tremendous help in making ends meet. 

Our current rental house is large which means we have loads of space which is great.  But it does mean it’s difficult to heat.  Particularly as it has lots of windows (in desperate need of repair with a landlord too cheap to get the work done), most of the house has external walls (not insulated) and it’s old/drafty.  So a cosy house would be good.

Lots of space also means lots of places to pile up clutter.  We’ve lived in this house for 6 years.  We’ve accumulated a lot of stuff in that time.  Plus I’ve been ill for around 4 years and not been able to do my periodic whirlwind attacks on piles of stuff.  So there’s a lot of sorting, organising, clearing out, ebaying (and car booting) to be done.  Not to mention cleaning all those dark corners that lie forgotten about.

We’ve had lots of offers of help and words of encouragement.  My mum has been brilliant.  My brother and girlfriend, who ahve just this month moved themselves, have offered hands on help with the de-clutter, packing and moving.  Which is a huge relief.  Looks like we’ll be doing a self pack and move so we can do it on a budget.  And I can’t do much of anything myself.  Very frustrating.  I have new lessons to learn in accepting help and swallowing pride while I point at dusty grotty things to be cleaned by someone else.

We’re also going to be on a frugal, careful budget from now on.  A few more sacrifices to be made.  But we’re not on the poverty line just yet.  We just have to be very careful. Luckily laughter and love are both free.

In other news tomorrow I go to one of my best friend’s wedding bash and we’ll be staying overnight at the hotel.  I did ring earlier in the week to see if I could cancel the room and save some money but there was no refund on offer.  So we’ll be making the absolute most of this little slice of luxury.

Head Full of Rocks Wrapped in Candy Floss

My head feels a bit like it’s full of rocks wrapped in candy floss.  Not quite so sticky in there today but my brain is all over the place. 

I threw a cup of peppermint tea over my shoulder this morning in bed and it went all down my back and all over the bed/wall.  Involuntary movement that seemed quite deliberate by some broken bit of my brain.  The circuits are a bit overloaded.

Dear friends, this post on my husband’s blog will give a hint as to why my head is a mess http://bit.ly/8BXVH

Sorry this isn’t the jolly post about what a lovely time I had for my birthday last week with cool pressies and a fab short break in North Wales.  I’ll try to get to that if I can focus beyond the fog for long enough.

Chronically Ill and Left Behind?

A friend has just gone back to work after 9 months of maternity leave only to be told on her first day back that they would like to make her redundant.  She’s been preparing herself to go back to work for months only she doesn’t seem to have a job to go back to.  Whilst a colleague in a different team has her boss making cakes for everyone to welcome her back from maternity leave my friend finds herself dropped in at the deep end.

image by drumrick on flickr

Whilst she’s been away the technologies she works with have moved on.  She feels disconnected and like everyone has moved on without her.  I know how I felt going back to work there after 3 months of sick leave and I got to do a gradual return to work with reduced responsibilities.  But it did make me realise how strange it would be to return to an office work environment.  The circumstances would be different and I’d be starting afresh but it would still be a major adjustment.  Well, not a problem because I don’t want to return to the kind of working situation I used to be in before illness robbed me of working.

Anyway – I’m digressing.  My friend has to complete a skills audit profile for HR to see if they can reassign her to another role.  Also she needs to get that CV up to date.  She asked, and I offered, to help her out with these.

What was an advantage was I haven’t done a job since I worked with her so could remember quite well a lot of the roles, skills and experience her job involved a couple of years ago.

But what did leave me shocked was realising that the world has (quite possibly) moved on a lot since I was last employed.  Are there new rules about CV’s now?  Do you need to highlight different things, include your blog or create a virtual CV?  Have the rules of the game changed?

I’m not really asking for the answers here. I used to be a bit of an expert on looking for and applying for jobs.  I realised just how much time has passed with me on the sidelines, not keeping abreast of the world, not knowing anymore.

I realises that the world is changing while I sit here on the sofa for years on end busy being sick.

Everytime I go out somewhere I see a new building, a new housing estate, a new shop, a new road that I’ve not seen before but that don’t look particularly new.  Because it’s only new to me.   It changed while I sat on the sofa.  if someone doesn’t tell me about online in the channels I visit – then I don’t know about it.

image by designwallah on flickr

I wonder if other things are changing, developing and moving away from me aside from those physical environmental things.  Fashions, attitudes, social interactions, language, legislation, education.  Are the people who I’m closest to actually getting further away from me without me seeing it happening?  As their lives evolve and change with me just barely in it.

There’s not much I can do but to do as much as I can.  And I’m already doing that (and sometimes more).  So I can’t change the changes.  But perhaps I need to do more mentally prepared at just how much of an alien I am becoming in the worlds and lives I once knew so well.

I can see how relationships may not suddenly break from chronic illness, but gradually slowly over months and years the cracks can appear from all that wear.  How do I guard against that damage which is almost inperceivable to see happening, especially when I am typically too sick to do anything more than the meager amounts I can?

I guess life has no certainties for any of us.  You just have to do your best and make the most of what you’re given.  But it’s still frightening to lose so much – even if it some of it slips away slowly while you’re not looking.