Archive for October, 2008

Another Social Cancellation

We didn’t go to the comedy gig tonight as planned.  The consensus (of me and Growler) was that I looked knackered and when I do things, big or exciting things when I look knackered it’s asking for trouble.  Like days of paying for a few hours of out and about.

So we’re staying home.  And I’m trying to not feel defeated, weak or useless at being normal.

I’m currently feeling a bit grumped that so many interesting things are in the evening.  Because sitting down to watch a show and trying to get the best of my energy, brain and health at what is a couple of hours before bedtime isn’t exactly the perfect plan.

It’s a double whammy because this morning there was A Thing on in Birmingham that I wanted to go to and had felt quite determined to go to.  But it meant being up, breakfasted, semi digested of breakfast, washed and dressed before I am normally even awake and then meeting lots of new people in a social buzzing kind of scene.  So not perfect for one who looks knackered and woke up feeling like someone had folded me into a tight bundle of crunched paper in the night.

In fact it’s a TRIPLE whammy because my dad just phoned and asked to take me to an art exhibition next week because it just blew him away and wants to share it with me.  Except on Wednesday I am being taken across country, intravenously sedated and having 2 wisdom teeth removed.  So I have to rest enough before to be well enough to go and have this done, and then afterwards … well I’m guessing I’m going to feel a bit ropey to say the least.

So I have to use Growler’s sensible brain with good perspective and planning to see if it’s a good idea to try and go on Monday or blow off yet another social thing.

I’m not utterly miserable, I’m not staggeringly ill. But not being able, trying to go to things or to see people and failing … well it sucks.  I want to be more eloquent but that is all I have.  Sucky stupid M.E.


Wheelchair Good, Wheelchair Anxiety

I went to the Opticians this week and Growler pushed me in my wheelchair from the car park into the town centre to the opticians store. I think I’ve been in town just twice in the last year.

I’m always a bit nervous going new places in my wheelchair because access in unknown.  Even going places who describe themselves as accessible on their web sites the reality can often prove very different.

I’m also concerned by “appearances”.  What will people think when I hop out of my wheelchair?

At the opticians the two collided.

First there was a small step up into the opticians which wouldn’t havebeen too bad except the door heavy and pulled towards you taking up all the space on the step and then there was a small metal lip at the base of the doorway to get over too.  it was just easiest for me to get out of the chair, hold the door for Growler who bumped the chair inside and then for me to sit back down. 

It felt weird for him to wheel me around the shop when I had proved capable of using my own legs.  I had to keep reminding myself that if I didn’t have the chair I couldn’t have gotten there in the first place, then I wouldn’t be able to browse frames as I couldn’t stand for that long.

When it was time to go in for the eye test Growler wheeled me toward the consulting room which I just knew would be too tiny for the wheelchair.  I hopped out in the doorway and sat in the consulting chair and wondered how people who relied on their wheelchair would cope as transfer would have been almost impossible.

I was grateful for the wheelchair especially once it came to choosing frames.  ME/CFS and natural indecision meant it took a while to choose and I could focus on the task in hand and not be distracted by needing to collapse in a heap.

Tonight we have tickets to a comedy gig at a theatre I’ve not been to in a wheelchair.  I’m nervous.  I’m quite anxious in fact because I’m never sure what to expect.  Will we have to fight our way to our seats, to the toilet, to see the show – or will the venue have really thought about these things for me?  If the toilets are nearby will it be easier to walk than be pushed and scatter people around us, but will walking make just one person think I don’t need that chair?  Does it matter?  Apparently it does to me because I keep having these same anxieties. 

I wonder what people make me of me jumping out my wheelchair enthusiastically.  What’s ironic is I usually have to get out of the chair because it’s easier for everyone if I do because access is poor.  Steps into a restaraunt, doors that would screw your back up trying to juggle them and pushing a wheelchair, walkways so narrow that turning the wheelchair disrupts everyone around you,  people standing in doorways and theatre aisles where you can’t squeeze past in a wheelchair by breathing in, parents with toddlers using disabled toilets as extra large toilets especially for their use, tables in a cafe so close together it’s get out of the chair or sit right by the draft entrance.

Aside from access what I want people to know is that the reason I can get out and walk is because I use the wheelchair.  Without the chair I’d look and feel very different physically.  So whilst I look (and sometimes feel) like a relatively normal person when I’m in the wheelchair that’s only because it’s doing it’s job – to not make me any more ill.

I suppose what I really need is not for them to know it, but for me to remember it and to hold my head high.

One Foot in Front Of The Other and Sometimes In Mouth

When you’re exhausted, when you’re pain levels are on the up, it’s easy to be distracted.  Life keeps on going and if you stopped doing things whilst you felt tired or in pain you’d never do anything.  There’s never a time when it stops.  Throw into the mix a brain that plays tricks on you – that splutters and falters without a warning. 

You put one foot in front of the other.  You keep living.  But sometimes that exhaustion, that pain, that pre-occupation with migraine or stomach cramps or trying not to fall over, combined with a stuttering brain means that foot can slip into mouth.

I notice that when I try to avoid just reacting, try to censor what I say or do in case foot slips into mouth, I adpot a vacant stare.  A question asked is met with an intake of breath and a vacant stare as I think “now … think about this …”.  Except those few seconds lead to forgetting every thought I ever had.

Foot in mouth seems, on the whole, to work out better.  Even if I cringe for days (if not weeks) when I say something blunt or inappropriate.

I am assured by those who are naturally blunt, that my own bluntness should be nothing of concern to me.  But it’s hard to hear these things slip from my mouth when I have always been so measured, always censor my thoughts.

If you ask me a difficult question, a direct question, would an immediate but sometimes blunt response be better than a vacant stare and possibly saying nothing at all?

Get A Lovely Postcard

I’d like to let everyone know about The Postcard Project

My friend would like to send YOU a postcard to brighten your day if only for a moment.

Elizabeth is a keen blogger, academic and writer with a chronic terminal condition.

Her job, the job she has given herself, to bring purpose to her life, is to send postcards out to people around the world.

Just send her your name and an address as the absolute minimum and you will recieve a postcard. Often they will be art, anime, limited edition or other types so if you write a bit about yourself she can tailor the card to you better.

She will also send postcards out to your children, grandchildren and so on – just tell her it’s for a child and she will select an appropriate card.

I’ve been lucky enough to receive a few postcards from Elizabeth and each has been very special and made me smile.  It’s so lovely to have some REAL mail from someone who has put a lot of effort in just for me.

It can take her many hours and tremendous effort to write and decorate these postcards but it’s something that is very important to her.  Now more than ever as her condition worsens and specialists have little to offer.  She suffers many seizures, memory loss and is in tremendous pain (amongst other things!) but this is something that she wants to do.  She just needs people to send cards to.

She would especially like to send cards to people who are chronically ill, disabled, depressed or lonely. But mainly to anyone who would appreciate knowing that someone somewhere had time for them, to make them feel cared for and special.

So if you’d like a postcard to brighten your day you’d also make a dying woman happy.  Go to the site she’s set up for the project for more details.

Thanks for letting me tell you about this.


Beautiful sunny autumnal morning.

I’m in bed. Sleep deprived. Naseaous. Headachey (fending off a migraine possibly). Period pain. Dodgey tummy and bowels.

Terrible gastric cramps and horrendous trapped wind pain last night. Growling and moaning and pacing in the night.  Was uncomfortable lying, sitting, standing, stretched out, scrunched up, massaging tummy, leaving tummy alone, applying heat, applying cold, applying nothing.  Ugh.  It was horrible.

Gastric pain has eased this morning (thank god than god thank god).  Last night’s interesting ME ride has left me amitriptyline free today (not good) and I defaulted on the lovely evening meal Growler cooked us.  I’m boycotting breakfast and probably lunch.  I’ve sticking with water and slowly sipping a peppermint tea.  Why must Waitrose have no Dr Stuart’s Fennel Tea in stock when the need is great.

So yes.  Yuck.  Yucky icky blurgh.


In other news I did manage to visit my mom on Thursday (I was allowed).  She’s much better but in normal tonsillitis terms still rotten ill.  But looks like the second course of double strength penicillin is finally working – she had (has?) some bad bad germs.  I kept my distance.  And had extra zinc.  Fingers crossed.

I’m also just about ready to list two of my paintings for sale if my body will cut me some slack.  I’ve managed to do some painting this week and finished another new one of a bunny with big feet.  Also some other arty bits and bobs, as well as lots of researching and thinking in preparation for selling work and trying to make life easier.

I had to cancel plans to visit a friend for tea today who has just moved away from the local area and has a new house about an hour away.  As she and her fella lead an exciting life they are now not around until mid November.  That’s post wisdom teeth extraction.  So we’ll have to see.

I am supposed to be going to a concert tomorrow evening.  I’m thinking positive that I’ll be ok to do that.  It’s local so no huge upheaval.  Never sure with new venues, especially local ones with no allocated seating and possibly no seating at all, what access with a wheelchair will be like.  But as it’s necessary for me to attend such things you just have to relax and smile and go with the flow.  Then make a fuss if necessary ;o)


So pretty blurgh right now and for the last 24 hours. Taking it slow today.  But not all in my world is bad.  And did I mention the sun is out?

Feeling Totally Useless

My mum has severe tonsillitis. She lives on her own. And because my immune system is screwed up thanks to ME/CFS I can’t go and see her. I can’t run over there and help. I don’t even have the energy to go and make her a cup of tea, heat some soup or fetch a prescription.  This is not how life was supposed to be.

Yesterday my dad took me out for an hour. I asked to go to a nature reserve nearby. He pushed me around the lake/pool in my wheelchair and even though his pace was fast I could hear a slight wheeze in his breathing.  We passed a couple about the same age as him with a pushchair containing a small child – I presume their grandchild. I hung my head in shame. My dad shouldn’t be psuhing his 35 year old daughter around on a sunny autumn afternoon – he should be feeding the ducks with his grandchild.  A grandchild that does not exist and may never exist is ME/CFS continues to beat me.

I tried hard to get to a point where I was earning enough in my job to have a comfortable life (ie. not having to scrape by every month) and where I could save and one day know that I could support my parents if they needed it.  That as they got older I could offer them a little help if they were in a tight spot.  Now the only income I have is from a small government assistance meant to help me with my care and mobility needs. I can’t work. I don’t earn.

Whenever my mom had a problem around the house if I could help fix it I would be the first there. My brother isn’t the practical kind and my eldest brother is absent 364 days of the year on average.  I would be the one to decorate, move furniture, fix a fuse, strip carpet out – get stuck in and get the job done.  I’d be the one to take the afternoon off work as holiday and drive 30 miles to take my mom to a hospital appointment.  Now I’m struggling to get myself downstairs to my own sofa.

Postscript: Growler says it’s good to focus on what I do have. A dad who can take me out and spend time with me, a mom who is able to live alone and a brother who is as we speak over there visiting her and taking supplies. To focus on the positives.  I’m trying to do so. 

It’s like being hit hard all over again by that grieving for who I was, what I had and what lay ahead.  Grieving for a future that hadn’t happened and being struck by one that now might and how different they look.  That life isn’t turning out how I’d wanted – and we’re not talking fancy cars and houses, we’re talking simple basics of ability and function.

I can’t say I’m able to wrap up the grief and the pain easily.  But as ever, with a supportive partner and family and friends, I can try to shift my focus slowly around to be thankful and positive, not dwelling on the fears and the grief.

Dreaming of ME

I’m starting to dream about having ME/CFS. I don’t remember it featuring much previously.  But now it is.

Last night I was in a familiar scenario walking down a street from my childhood trying to get to a safe place (places seem to represent certain feelings, fears and thoughts for me).  But I was getting more exhausted with every step I took and I was with a family member who had no concept of my illness and it’s effects.  I was practically crawling.  I was so exhausted I couldn’t think or see straight.

A few night ago I had brain fog in a dream.  I mixed my words up in a dream – just like I do in life.  I was so stunned I woke up still trying to grasp the word I had really meant. Someone in my dream was telling me a meal was condiment instead of complimentary.

And over the last few weeks I’ve had more dreams of exhaustion and confusion.  I ever dreamt I’d had my legs removed in one.

I remember reading someone else blogging about disability and illness invading their dreams.  I thought it was a fairly natural thing to happen, for your mind to try and work things out during sleep and this included illness and disability. Now it’s happening to me I admit I feel a bit cheated. At least in my dreams I was free – I was healthy and active and free.  I’m glad my brain is working things out – but I wish it could do by letting me run around and be happy!


Push It 11 Sep 2011

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