Tuesday, 16 April 2013

Reasons why I'm glad to be ill.

In an effort to prove being ill is not all doom and gloom, I thought I'd bring you a more cheerful blog this time, inspired by Toni Berhard's 'Top 10 reasons I don't mind being housebound'.

I've been trying to cheer myself up during countless hours home alone and also distract myself from wondering when the next brown envelope from the benefits office will drop through the door. I have been thinking of the plus sides to living with ME, working on the principle that 'Everything is brilliant, you just have to change your mind'. So here is what I have decided are my best bits about being ill.

1. No work stress.
Even though I miss being able to work, especially the bit where you get paid, there are many aspects of my job I am ecstatic I don't have to do any more. Before I got ill, I was a teacher and the things I am glad I no longer have to do are Parents Evenings, Christmas Performances, anything to do with Ofsted or new government initiatives, in fact the list could go on and on. I'll spare you the details.

2. I know my husband loves me.
Obviously I was pretty sure before or I wouldn't have married him but being ill has really made me appreciate how much he cares. After all, if he didn't love me he wouldn't stick around and put up with this nonsense. He's been absolutely fantastic and supportive the whole time I've been ill despite me telling him he should have kept the receipt and exchanged me for a working model.

Shoe collection is getting quite impressive now.
3. Housework is a thing of the past.
I used to be quite houseproud until I became ill. Everything in the house had its place, even if that place was shoved in a cupboard so no-one could see. Any arrival of visitors was preceded by a cursory trip round the house with duster and j cloth. Now, I have learnt to ignore the dust and the clutter. It simply isn't that important any more. When your priorities shift to whether you have enough energy to get out of bed and have a bath, doing the hoovering suddenly seems like such a waste of effort. I don't even nag my husband to put his shoes away any more although I do miss singing the 'three pairs of shoes' song at him till he complied. (He doesn't miss this.)

4. Becoming a nicer person.
It seems an odd thing to admit as I wasn't particularly terrible before, yet I have noticed I am definitely a lot nicer these days. I have more compassion for my fellow humans having experienced some pretty low times at the start of my illness and now try not to judge others as I realise we all have our own particular trials to go through.

5. The Internet.
All hail the Interweb
I love computers. I love the Internet. I love being able to search for and access whatever I want just with the touch of a button. I might be stuck at home but I can watch films on YouTube, message people I otherwise would have little contact with, post my witterings on my blog for all to see and generally make a cyber-nuisance of myself. Twitter has also been invaluable for helping me find other people with ME. The support and humour of these people has been more helpful to me than anything I've had from the real world. Thank you Twitter buddies!

6. Starting to write again.
Depending on whether you like my blog you may or may not agree with this one! I've always wanted to write and have, at times in my life, attempted to write different bits and bobs. I never had the confidence or the drive to finish any of it or dare to put it out there where someone could actually read it until now. It's not even that I think my writing has drastically improved, more a mixture of needing an outlet to vent my thoughts as well as simply not having anything to lose!

Sunbathing ME stylee.
 7. Bed
I spend a lot of time in bed resting and I love it for many reasons. I love getting cosy under my duvet when it's cold, I love the fact that resting in bed makes me feel less terrible. I love looking out the window and watching the clouds drift by. On sunny afternoons I love opening the window wide so I can sunbathe on my bed. The way I see it, I may be ill but at least when I'm resting in bed I'm in the best place possible.

8. Google images.
Although technically this is covered by my point about the internet, I think Google images deserves a merit just for itself. There are so many photos and images now hurtling round cyberspace that from the comfort of my bed I can be anywhere, see anything I like just by doing a quick search. A lovely image does wonders to cheer me up when I need a bit of a boost and for those so inclined, a search of your favourite actor/actress/rock star can be most invigorating. Just be careful with those search terms, people!

9. I can wear what I like.
Me in the early nineties wearing my favourite dip dye jeans.
When I started secondary school I used to get bullied for having the wrong shoes, the wrong coat, wearing my socks too high. Instead of making me want to dress the same as all my peers the opposite happened. I went out of my way to dress differently and took great pleasure in looking like 'an explosion in a paint factory'. Over the years, due mainly to work, my style has become a lot more boring with most purchases of clothing justified as being suitable for work. Now I can again start wearing all those bright mis-matched items lurking at the back of my wardrobe. The best part is it doesn't  matter if I look awful because no-one else will see.

10. Things can only get better!
Because when you spend most of your life alternating between bed and the sofa, the only way is up.

 I hope you like my reasons to be cheerful. I'd love to hear your own if you get the chance or the energy to share.

Tuesday, 2 April 2013

The Atos Experience - Part Two

So here I am at last, after weeks of dread and anxiety I am finally about to have my Work Capacity Assessment. I can already feel my brain and body starting to tire from both the stress of the situation and the effort of getting to the assessment centre. I've no idea what is about to happen, or the impact it will have on my future so I simply take some deep breaths and ready myself to try and prove I am ill enough to deserve my benefit.

The lady with the cheery yet dead-eyed demeanour sets to work. She explains what to expect and begins to question me. It feels odd to be telling a complete stranger all about myself, not just my illness but my day to day routines. It feels even more odd to think this information will then be passed on and used by some random civil servant in an office to anonymously decide my fate. I do all I can to be as honest and as detailed as possible.

She begins by asking me about how I became ill and so I tell her about the chest infection, the sinus infection, trying to carry on at work when my body ached all over, the inevitable moment my body gave up. She asks me when I last worked and when I tell her, she works out it was 17 months ago - "Is that about right?" she asks. My brain is too foggy to work it out for myself so I agree even though it sounds like such a long time. But then I have been ill such a long time. She asks if I am depressed and seems determined that I should be. I quite forcibly have to assure her that I'm not. "On your initial application form you say you are" she demands. Yes, but I filled that form in almost 6 months ago and I have been working on accepting and dealing with my illness I reply. I am not depressed but when I feel really ill understandably my mood is lower than usual.

Next she wants to know what I am able to do for myself and so I tell her. I tell her how I get tired  very easily and can only do physical and mental tasks for very short periods of time before I have to rest. I tell her that when I rest I have to be alone in a quiet room, lying down otherwise I don't feel better. I explain that if I overdo physical or mental activity without resting I will end up bed bound - that each 3hr trip to my ME support group leaves me too ill to get out of bed for at least 2 days. She clacks away at her keyboard, noting down everything I say.

She wants to know if I am able to care for myself and so I explain that showers are too tricky - standing up is hard enough for me without trying it in a confined and slippy space. I explain the fact I plan my baths in advance so I know I will have the energy to get clean, wash my hair and then have the energy to dry it afterwards. I tell her that I had a bath yesterday as I knew the assessment would leave me too tired and ill to have one for several days. "But you are able to get in and out of the bath yourself?" she replies. "And you can wash your hair yourself?" as if these facts themselves show I am not so ill after all.

She asks about meals and I say I can make simple food like sandwiches and scrambled eggs but that my husband makes the main meals. She wants to know if I can make a cup of tea and seems to find it significant that I can carry a kettle. I counter that I don't carry the kettle - it is next to the sink so I pick it up, fill it a little and put it down. I add that on the days after my hospital visits I am unable to make tea at all. "So what do you do?" she sounds incredulous at the thought of not having tea. I go without, I reply, or wait for my husband to get home and make me one. I resist the urge to say that going without tea is the least of my worries.

The interrogation continues back and forth. Can I do housework? (A little on better days), Can I drive a car still? (Again, a little on better days). Do I feel safe in the kitchen? (Mostly, as the days when holding a knife would be risky I tend to be bed bound and not inclined to cook). She wants to know about my hobbies so I tell her the things I like doing and then sadly add that I currently don't have much energy for any of them at the moment. Can I stand up to queue? (I avoid it as it's too tiring). how far can you walk? (Not very). I tell her about my sensitivity to light and sound, how it makes reading, watching tv and using computers hard for me so I have to do these things in small rations. "So what exactly do you do all day?" is her response. It is like a physical shock and I flounder. I am unable to answer - what do I do all day?

The rest of the assessment is a blur. There is a half hearted attempt at a physical examination that consists of copying some limp-wristed hand moves followed by me having to crouch down and stand up again. At one point she asks me to make circles with my thumb and forefinger. She puts her finger through the circle and tells me to try and stop her breaking it. The amount of pressure she applies wouldn't trouble a wet paper bag. I can't decide if this because she is trying to prove me fitter than I am or just her sheer embarrassment at the futility of these exercises. At the end of this she tells me I can go and thanks me enthusiastically several times for coming. It's almost as if I had a choice to be there or not. I check my watch - I have been in there 40 minutes.

 It wasn't actually that much of an ordeal, but then by all accounts the ordeal might start when the next brown envelope drops through my letterbox. I really have no idea if I have said enough to convince these people, if I have ticked enough of the right boxes. All I know is that I am virtually housebound for most of my time. I spend a fair proportion of the day having to rest. My doctor, my Occupational Health adviser and my hospital consultants all recognise I have a real and devastating illness. I am quite lucky in this respect as many medical professionals still do not. There is no question of me being fit for work and yet this is not enough for the government. Chances are, that when that brown envelope drops, I will discover that they consider me not ill enough for benefits and that I should jolly well go out and get a job instead of sponging off the state.

Looking back after the event and the ridiculousness of the whole pantomime, there is one moment that stays with me the most. "What do you do all day?" echoes around my mind like a stuck record. Despite all the questions and inconveniences this process has involved, for me this is by far the worst. For months now I have been trying my best to move on from my old life and learn to make the most of what I am now left with. I have done everything possible within the limits of my energy to improve my little bubble of existence. it has taken many months and a lot of heartache to be able to accept that this is the life i have now and that it is just as valid as the life I had before, but for that split second I was back at the start of this horrible illness again. What do I do all day? At the time I honestly couldn't tell her. It isn't until I get home that I realise what I should have said - I do what I can, lady, I survive and for me, that's enough.