Monday, 12 August 2013

M.E. Girl - the launch of a superhero

As I was a complete miserablist in my last post, I needed something to cheer me up. So I drew a picture of M.E Girl, an idea I've had in my head for a while now. Here she is.......

I've already introduced her on Twitter and had some lovely feedback and there'll be more from her in the future depending on my energy levels and drawing skills. She has more superpowers to unleash as well as the story of how she met her slightly bizarre sidekick. 

All hail M.E Girl! She will use her water bottle of truth to wash away all lies and misinformation about M.E. 

Then she'll probably need a rest for a while.

Wednesday, 7 August 2013

Birthday Blues

It's that time of year again and my birthday is almost here. Yet for the first time in my life I find I'm not looking forward to it at all. I'm quite an excitable person normally and in the run up to my birthday I'm usually reminding everyone how many weeks left to go, dropping not so subtle hints of what I'd like and generally behaving like a big kid. This year however is completely different. In fact if truth be told, I'd rather just pull the duvet over my head and forget about the whole palaver altogether. I feel like such a misery guts about it all - even Eeyore had a birthday party although I expect he didn't enjoy it much.

I think the first reason for this is that I actually feel terrible most of the time and have to spend about 20 hours of each day lying in bed or on the sofa doing absolutely nothing. It's pretty hard to celebrate anything when you have to spend most of your time alone in a dark, quiet room. 

I'm dreading the inevitable deluge of well wishes too. Obviously I'll be a bit miffed if I don't get any but it currently takes me anything up to a couple of weeks to get round to answering even the simplest of emails or texts. I avoid phone calls almost completely as they make my head hurt and the rare occasions I do make a call, it's to my parents to reassure them I am actually still alive. My husband is getting quite good at fielding calls from other family members. I'm sure they must think I'm being awkward but I'm really not.

I'm also not up to the company. No-one surely would chose to be alone on their birthday yet at the moment I'm starting to wonder if it isn't the better idea. My husband has taken the week off work because we usually spend the time doing nice things together. As I can barely leave the house this ain't going to happen. And whilst it is nice having him around, it does mean that I won't be able to spend my days resting on the sofa as usual. The noise of him pottering or watching telly will be too much for me so I shall have to confine myself to the bedroom for the week. I need that daily change of scenery to stop me going completely stir crazy yet how can I tell him not to bother taking the time off?

Similarly, my parents want to visit at some point. I understand they want to see me as I'm their only daughter and it's my 'special' day. They are worried about me and haven't visited for several months but therein lies the problem. The last time they visited I was not quite as bad as I am now but even then, the emotional strain of having them there and seeing me in such a poor condition left me feeling even more terrible. It took me about a week to recover and I really don't need the extra stress or strain right now. But again, how can I tell them not to bother coming?

As for presents, normally I love them. Can't get enough. But as I'm too ill to do anything really, there's nothing I want. I can't listen to the albums I'd like or see the films I want to watch. The hobbies I enjoy have all gone by the wayside for the time being. I still have things I asked for at Christmas unused and gathering dust because I just haven't had the strength. All I can manage is writing my blog and drawing in my sketch book. I don't really need much to help me do either.

There's also the main reason for my despondency. It's not just the anniversary of my birth, it's also the anniversary of when I got ill. Yes, I have the dubious honour of first feeling unwell on my birthday two years ago. Things haven't been the same since. It doesn't help that last year I was in a really good place. I'd managed to claw my way back to being able to get out and about for 4 hours solid at a time and spent the whole week doing lovely things. The weekend before my birthday I had a meal out with friends. On the day itself I went for a swim at the local spa. I was knackered but after resting for a day, I was well enough to go stay at my parents for the night before travelling to Leavesden for my birthday treat of a trip round the Harry Potter studios. I managed four hours of walking round with only a couple of quick sit downs. It seems like a miracle now or perhaps it was the 'magic of Harry Potter.' Either way, I had an amazing week and really felt I had turned a corner on my way to wellness. How wrong I was. 

I can't even contemplate doing one of those things in a week, let alone the whole lot. Since then, a gradual decline has led me here - housebound and incapable of doing all but the most menial of tasks. Perhaps it's no surprise that the last thing in the world I feel like doing is celebrating on the day that marks the start of this whole devastating affair. No, I'd much rather pull that duvet back over my head thank you very much. In fact, I'd prefer some sort of magic drug to render me unconscious for the rest of this horrible illness altogether. That way, someone can wake me up when I'm better and I can spend a whole month partying to make up for all the Christmases, birthdays, weddings, funerals, bar mitzvahs etc I've missed. Yes, I think that's best. Wake me when I'm well please - that really will be something worth celebrating.

Tuesday, 23 July 2013

The importance of being important

I've been musing a lot lately about the changes in my life since I became ill. Obviously there are major changes that I've touched upon in previous posts but the ones I have been thinking about are more subtle - the finer details of my day to day existence. You see, it's all a question of importance. The various things around you have their own levels of importance based on need, usefulness or just plain aesthetic value and I have noticed that many of the objects I couldn't live without as a healthy person now hold little to no meaning any more.

For instance, here are some examples of what 'healthy' Charlotte considered important.

Like most normal folk, I would never leave the house without my house keys, car keys and wallet. Being a lady who likes a nice handbag, I had also managed to amass a small collection of bags in which to put everything in. I've always been a bit OCD about my bag and contents and always liked to make sure I knew exactly where my essentials were. It was a bit of a standing joke that I would have my bag on me at all times - on the dance floor at clubs, bringing it up to the bedroom with me every night in case burglars should decide to visit. I even insisted on having a handbag on my wedding day as I couldn't bear the thought of entrusting anyone with my phone and keys. Looking back, I think it's fair to say I was a smidgen over the top although in my defence I have never lost my wallet, keys, phone or had my bag stolen so there was some method to my madness.

How times have changed. I can't remember the last time I used my house keys. My car keys only get used by my husband to make sure my car battery is still alive. I'm coming to the conclusion that I'd be better off selling it. As to my lovely handbags, I just don't need them. My wallet stays largely unopened as I only spend my money on bills and online food shopping. My Dad would definitely now make a joke about how it remained largely unopened before I got ill - something along the lines of moths flying out.
Tracy Emin's latest work - 'Coat Rack'
As for shoes, they are largely a thing of the past for the time being.  I spent months trawling Ebay to find the limited edition Reebok Freestyles in the photo. I was over the moon when I finally found pair to go with the five other different types of Reebok Freestyles I already owned - I admit I'm a bit of a trainer geek and now I don't wear any of them. I do still love them dearly however they have lost all importance for me other than something nice to look at. Similarly, my coats and hats stay largely untouched on the coat rack resembling more a piece of modern art than anything of actual use to me.

So these days, I have my new collection of things I can't do without. I have them near me at all times and they each serve an important function in my new life as a full time ill person. They may not seem exciting to you but they make my life just that little bit easier to bear and so in that respect they are far more important than any possessions I have owned in the past. Here they are in all their glory. 

It's pretty much self-explanatory. The earplugs and ear defenders are to help with sensitivity to noise and the sunglasses for sensitivity to light. I wear a combination of these pretty much all the time as too much stimulation of any sort makes my brain hurt and go into 'fight or flight' style meltdown. This includes hot flush, sweating, muscular aches, heart palpitations and more. Sounds great doesn't it? Even with all this paraphernalia I tend to get to this point after about 40 minutes and have to retreat to a dark, quiet bedroom. If I get over hungry then again, meltdown approaches hence the emergency cereal bar. This isn't even a new ME thing - my hunger rages are the stuff of legend. The smartphone (other brands are available) is my link to the outside world and pretty invaluable. Thank goodness for modern technology otherwise I would be completely isolated during the day. I can blog, email, tweet etc all from the comfort of my bed. The only downside is too much online time makes my head hurt and meltdown imminent and it's hard to limit myself as much as I should because I get so bored!

It's strange to think these days my happiness is largely reliant on two little bits of foam I stick in my ears but that's life, I guess. We never know what's around the corner or what will become important to us as circumstances change. I'm hoping that as I get better, I'll get a new set of things I find important to muse over. In some ways it's kind of exciting not knowing how my life will pan out in the future. Before I got ill it just seemed I'd be doing the daily grind until retirement or death but now who knows what will happen? I like to think that it could be a brand new start and that in some ways, anything is possible. Let's hope so anyway.

Monday, 1 July 2013

Ermine Road, rats and skanking

Mr James was a student landlord who seemingly had houses all over Chester. Over the years I was to live in several of his houses, the first of which was Ermine road. He was quite a character and his houses were invariably deathtraps - he and his houses deserve a whole blog post to themselves however Ermine road holds a special place in my memory as it was where I had my first taste of independence. Even though we only lived there about two months, to me in my memory that summer stretched on for longer. It was a summer of firsts –my first real job other than a few hours here and there doing cleaning the summer before, the first time I had supported myself as during term time my parents paid my rent and my Nanna sent me money for food, the first time I'd lived with a boyfriend although in this case it was purely practical and just for the cheap rent. It was also the summer I was to turn 20 and so marked the end of my teenage years.

19 year old me at Ermine Road. Stripey jumper model's own.

It was during my second year of university that some of us decided we didn't want to go back to the shackles of family life over the holidays. Instead we decided we wanted to get jobs for the summer and stay in Chester, living the independent lifestyle to which we'd become accustomed. We were already familiar with the house at Ermine Road as four lads who knew my then boyfriend, Mat, lived there. I can remember one incident when they decided to have a boy's night playing poker and watching pornos but me and a friend called Kirsty took exception to this. We decided it was a bit sexist that girls weren't allowed so on the night in question we dressed up in men's clothes, drew beards and moustaches on our faces with eyeliner and turned up on the doorstep to join the fun. Being nice chaps they took it all in good humour and invited us both in. We remained in character for the whole evening, referring to ourselves as Charles and Kris. I think the boys tried to teach me how to play poker (and failed) then after the game Kirsty and I duly watched the porno with them. It was the first and only time I've watched one (I've lived a sheltered life) but I remember it was so truly terrible that we all found it hilarious.

By the end of the summer term I'd managed to sort myself a summer job on a playscheme in a rough part of town as well as working three nights a week at the local biker pub with my friend Giles. I was all set and as soon as the lads moved out, me and my friends were ready to move in. Mr James had told us he wasn't bothered how many people were living there over the summer as long as he got the same amount of rent each week so in order to make life a bit easier, we decided to cram as many people into the tiny four-bed terrace as possible. There was Kirsty and sometimes Cath in the front bedroom, me and Mat in another, Giles in the small back bedroom and downstairs were Lindsey and her boyfriend Marc. With so many of us in such a small space you'd think we might struggle to get along but actually from what I remember, there were no real problems. That is until the lighter skanking got out of hand.

It was an unwritten rule in our circle of friends that if you lent someone your lighter and didn't remember to ask for it back, they were well within their rights to steal or 'skank' it. This practice had been going on at a low level for months but by the time we reached Ermine Road it escalated to epic proportions. No one was safe. New lighters got bought and if they weren't watched over they disappeared almost immediately. We finally worked out the main culprit was Lindsey although strangely I can't remember if she even smoked at the time. Things came to a head when we got so fed up with this, we cornered Marc while she was at work. We managed to persuade him to show us where her secret lighter stash was and then, promising we wouldn't let on that he told us, we skanked the lot! I can't remember her reaction but I expect it was pretty spectacular.

Mat possibly hiding from the rats, in our bedroom.
At some point the rats arrived - not the wild, uninvited kind I grant you, although looking at the state of the place, it wouldn't have surprised me. For some unknown reason Mat and Kirsty took it upon themselves to come home one day with a pet rat each. They were duly named Rabies and Plague, one going to live in Kirsty's room, the other with me and Mat. I know they definitely both started off in cages but at some point this was deemed unnecessary. Over time, the rats escaped to be granted free reign of their respective rooms. Kirsty's celebrated by chewing through her speaker wires, Mat's by decimating my pink plastic pirate sword. Occasionally they would be allowed a trip downstairs to the living room although this stopped after they got inside the sofa. I can't remember how long they were in there - it might have been hours or even days. What I do remember is the bizarre sensation of sitting on a sofa and feeling the vibrations of rats scurrying about below. Eventually I think they were coaxed out with sunflower seeds.

It just so happened that Giles and I shared a birthday. As the day approached we lamented more and more about the demise of our teenage years. We were going to be twenty - proper numbers. I began quoting from Julian Cope's autobiography where, about to reach twenty himself, he writes a song with the lyrics 'I'm two decades old, two decades old, too decayed to know what's going on.' The night before the big day, we were both working at the pub. As last orders approached, we put 'Teenage Kicks' by the Undertones on the Jukebox to celebrate our final night of teenagerdom. There were to be no more teenage kicks for us from now on. Back at the house, the guys waited until the stroke of midnight then brought out our surprise. Whilst we had been at work, Kirsty had been busy baking us a cake each. She had cut shapes out of sponge and assembled them to make rudimentary versions of Giles and me, icing them to look just like us even down to Giles' trademark camouflage combats. It was amazing and still the best cake I've ever been given for sheer thought and effort alone. The next day, I spent my twentieth birthday surrounded by children at the playscheme. It's the only time I've ever worked on my birthday and although it was nice having them all sing to me, I suspect it was enough to make me vow to take future birthdays off as holiday.

Birthday buddy Giles with his girlfriend.

I don't remember huge amounts about the summer, just little snippets here and there. Like the time Mat dropped a full can of coke in the hall and despite clearing it up, the next morning there were ants covering the floor tiles and trooping fervently into Marc and Lindsey's room. They fashioned an ant trap out of sugar and boiling water in a saucer, creating a sort of ant swimming pool of doom. I remember it was a particularly hot summer. Instead of going outside, we spent warm, sticky hours in the living room playing target practise with a pump action water pistol. It was so hot and uncomfortable one night that Mat, Lindsey and I couldn't sleep. We sat in the dark eating frozen veg straight from the freezer then Lindsey offered to take us for a drive. It was about 3am and we were hurtling to Helsby and back with the windows open just to get some cold air. Another night, we thought we were being burgled but it was just a drunk friend breaking in on his way back from the pub so he could kip on the sofa. These are the random memories that have stayed with me over the years.

It may be a case of rose-tinted spectacles but most of all, I remember having a blast. The feeling of freedom, independence and endless possibilities. That this was the start of being a grown-up and that this scary new world I had so far tried my best to avoid was actually achievable. It seemed simple to me - that all you had to do was get a job and earn enough money to pay the bills then spend the rest of your time having fun. Life was out there for the living and if it was going to be like life at Ermine Road then I was ready to grasp it with both hands. I'm almost twice as old as I was that summer and somewhere along the way I forgot the important bit about having fun. The job became more important than anything and life slowly turned less sparkly, less exciting. Now I find myself in a position where ill health has forced me to quit that all important job and actually, I don't miss it or think about it one bit. I miss my colleagues of course, and the wages but I couldn't care less about the job itself. What I do miss and think about is being well and having fun so when I finally get better from this ridiculous illness, I promise myself that my new goal in life will be to make sure I do have fun. And lots of it. Preferably without the rats though.

Friday, 14 June 2013

Eye eye ISS

Last night I sat in my garden for a whole 10 minutes and watched the ISS passing overhead. It was my fourth attempt in as many nights, the other times thwarted by bad timing or cloudy weather.

As I sat there watching those astronauts all those many miles away hurtling around the earth it occurred to me that this was quite something. At that moment we were complete opposites of each other. The people in that tin can flying around in space were as far as you could possibly get from the planet and here I was watching them, my own particular orbit reduced to going between the back garden and the front step.

Yet for a few magical moments as they sailed directly over my head, there was nothing between us but air. We were sharing the same patch of sky but from opposite ends of the spectrum. It felt amazing. For one split second I even thought to myself that one day that might be me hurtling round up there. Then I remembered that at my age and with my medical history the chances of NASA taking me on are slim to none. Oh well. It didn't really matter because for those few moments out in my back garden I wasn't housebound, I wasn't stuck at home, I wasn't ill - I was with those men up in that space station and I was flying high above the world.

You can view the next time for the ISS passing over the UK here.

View of the UK from the ISS.

Tuesday, 4 June 2013

Invisible Illness

Normally I'm not a fan of cameras being pointed in my direction. I tend to be very critical of most photos of myself as a rule, then find myself years later looking back thinking 'I looked pretty darn good then - why did I think I looked awful? I look really awful now!'

It's odd how we don't often appreciate what we've got looks wise until it's gone however every once in a while I will stumble across a photo of myself I really rather like.

So here I am in a photo I took the other week whilst sat in my garden. It is perhaps the best photo of me I have seen for a long while - I am quite picky. Now, you might be wondering why on earth I'm writing this and secretly thinking I'm a bit self-centred to be writing about a good picture of myself, but there's a bit more to it than that. You see, the irony is that when this photo was taken, I was probably at my worst health wise. 

On this particular day, right in the midst of a spectacular ME crash, the weather was lovely. So, despite feeling like utter cack, I dragged myself out of bed and sat in the sun for some much needed vitamin D and fresh air. I lasted about 15 minutes before I started to feel achey, hot, sweaty and downright ill. I spent the next few hours recovering in bed with the blinds down and the windows closed because the light from the sun and the sound of the birds singing were too much for my poor, hurting brain.

My point is that to look at this photo, or to look at me in real life, you would not know how ill I am.  How I spend most of the day resting just for those small snatches of feeling relatively less rubbish.  I look normal - there are no cuts or bruises, no limbs missing, no rubber stamp on my forehead proclaiming my deficiencies. It makes me realise why others have such a hard time understanding what it's like to have ME and other 'invisible' illnesses. 

The term is particularly apt as not only is my illness invisible to the eye, it makes me feel invisible also. So far I have had to resign my job, lose my social life and my independence. I rarely see anyone as having conversations on the phone or in person make my brain hurt. I can only watch tv, read or use the computer for very short periods of time before my brain starts to hurt, then sure enough my limbs will start to ache as well and I'm in for a fun old time in bed for the foreseeable. It really does feel like everything I know and love is slowly being stripped away from me piece by piece.

I think this is why I spend most of what little energy I have online - writing blogs, tweets, posting photos on Instagram. It is a way of proving my existence, of leaving a virtual trail to show I'm still there, still fighting, still the same person I ever was despite being trapped by a horrible, life-changing illness.  And the fact I'm still able to do this, however slowly, means I am still one of the lucky ones. There are people with this illness in far worse condition than me and there is always hope for recovery, even if only partially. Frankly, at this point I'll take any improvement, however miniscule. I may not see my friends or family often but I know they love me and wish me good health and happiness and I am blessed to have a wonderful husband who cares for me without complaint or making me feel this is in any way my fault.  I try my best to stay positive and generally succeed but every now and then I can't help but wonder if there'll be a time I become so invisible that I disappear completely. I sometimes think if that happens, then who's to know I even existed at all.

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.

Friday, 22 March 2013

The Atos Experience - Part One

So here I am almost at the end of my month of doom. Weekly hospital appointments with ME support have really taken their toll and so I haven't had the energy to blog or do anything else really. I pretty much knew this month would be a complete write off because of this but the upside is that I was nice and knackered for my Atos assessment this week. I thought I'd share with you my experience of the wonders of the Work Capacity Assessment but there's a lot I'd like to tell you so I shall do this in two parts otherwise this blog will be longer than a giraffe's scarf.

Having seen the horror stories in the news and heard the experiences of other people with ME, I was certainly not looking forward to sampling the charms of Atos for myself. It had already been a bad start when my initial appointment was cancelled with 2 days notice due to 'availability' which meant my husband having to re-arrange the day off work he'd booked in order to take me. They had 'helpfully' included bus times in my new appointment letter because of course it is that easy for us sick and disabled people. We might be too ill to manage leaving the house or working for a living but according to Atos, travelling by public transport is a mere breeze. It's fair to say I was a tad annoyed at both the cancellation and the implication I could just hop on several buses and walk from the stop to the assessment centre. I can't. That's kind of the whole point why you're assessing me! No matter, my husband managed to get the new day off work and I awaited my fate with baited breath.

So-called because they don't give Atos.

It took 20 minutes to drive to the centre, and a more depressing, dispiriting building I am yet to see. For a start, the car park was a short walk away (tricky) although blue badge holders were allowed through the hallowed barriers to park much nearer. At least, blue badge holders who were being assessed could - one woman being assessed was there with her mother. Her mother (the badge holder) was also disabled but as she wasn't the one being assessed, the security man told her she'd have to park in the normal car park and walk. Charming.

The waiting room was the sort of place you have to check before you sit down, just in case there's something nasty left by the previous occupant. There was no access to toilets either as we had arrived during the receptionist's lunch break and the only toilet was through the locked door separating us from the Atos staff. Everyone in the waiting room looked miserable, with an air of impending doom. When the receptionist finally arrived back from her lunch, she seemed quite nice and willingly buzzed me through to the toilets. These were again a short walk from the waiting room (tricky again) and again the sort of place you check (several times) before sitting down. As I shuffled back to the waiting room at my snail's pace, I passed shabby looking rooms and it occurred to me my assessor was probably in one of these rooms and perhaps I'd get marked down on my ability to walk to the loo by myself. You might think I was being a little paranoid but from what I'd been told, they would be assessing every little detail about me. In fact it wouldn't have surprised me if there had been CCTV so they could watch and assess our behaviour as we waited.

After a short wait, I was called for my assessment. The woman seemed very bright and chirpy but in a forced, unnatural way. I got the sense she was following her own cheery script she reeled out for every poor bugger and that underneath it all, she was as steely and hard faced as anyone paid to take away benefits from ill people would have to be. I almost felt sorry for her as she seemed quite dispirited by the whole process but then I reminded myself that she had the power to wreck lives and that anyone willing to work for such a company must surely be as culpable as those at the top. Sort of like the builders who died when the Death Star blew up deserved it because they were working for the dark side. She told me quite specifically to sit in a particular chair which was set at a peculiar angle. I tried to adjust it but it was quite a heavy chair and I could only manage a feeble shuffle. Such was my paranoia, I wondered if this was also part of the assessment. I imagined her ticking the box for 'chair wrangling' and deducting yet another point from my score. Now my husband and I were both seated, she ran through what to expect and the long dreaded assessment could finally begin.

*Tune in next time to find out if  'carrying a kettle'  qualifies you as fit for work. This and other exciting developments in 'The Atos Experience - Part Two'*

Friday, 15 February 2013

The Ten CommandMEnts

It's been almost a month since my last post and for one reason or another I just haven't got round to updating my blog until now. Perhaps because my last post was my most personal and emotional yet, it took a lot to write and so I think I needed longer than usual to re-group. I'm glad I was brave enough to put my views on motherhood out there as the mere act of just writing it down for all to see has had a remarkable effect on me - I finally feel at peace on the subject and able to move on to my new, probably childless, future with serenity and good grace.

In fact, overall I feel this is a period of adjustment and re-evaluation as I have finally come to terms with the fact that this isn't just a passing blip and that I need to make the most of life coping with ME, rather than grieving for the person I was before I became ill. I have realised that just because my life has been turned upside down by this condition, there is no reason why I can't at least try to enjoy myself and have fun - I just have to be a bit more creative as socialising or even leaving the house can be quite a challenge most days. Luckily, my sense of humour is still fully functioning and in rude health, unlike the rest of me!

So with this new spirit of positivity and change in place, I have come up with some commandments to help me try and remember to live my live as best I can. A declaration of sorts that will remind me to look after my own interests for a change, instead of trying to please others all the time. I thought I would share them with you so here they are.

1. I will enjoy the simple pleasures in life more.

2. I will no longer pretend to feel better than I do.

3. I will stop blaming myself for not getting better yet.

4. I will not be ashamed or embarrassed of being ill.

5. I will not worry about what other people think of me as it is no longer my concern.

6. I will listen to my instincts and stop when my body tells me it has had enough.

7. I will not waste my time worrying about my past life or the life I have not yet lived. Instead I will make the most of the life I have now.

8. I will not get involved in the debate over whether to call my illness ME or CFS or any other name until research is done to be able to tell me what illness I actually have and how to treat it.

9. I will not worry about things I cannot control.

10. I will be thankful for the good things in my life.

Writing my commandments was not quite as dramatic as this!
I am determined to turn this chapter in my life into a positive and am going to do my best to live by these statements. I am taking a holistic approach to getting better - I have already revamped my diet and have now been referred to Fatigue Management Services to help manage my pacing (and hopefully my recovery) so now I am looking at improving my mind and how I deal with stress. I think I am going to need all the help I can get, with my Atos assessment in a few weeks plus HR wanting to 'review' my contract (throw me on the scrap heap) at work soon. Perhaps I need to glue these 10 points to every available surface in my home. I will, of course, let you know how I get on with the new, improved zen-like me. I'd love to hear if you have your own commandments you'd like to add so please leave a comment if there's something I've forgotten.

Wednesday, 16 January 2013

The cold, hard truth

I've been putting off this blog post as usually I try to write with a little bit of humour and hopefully wit to lighten the mood however this is, unavoidably, a bit of a downer. I have been writing and re-writing this post in my head for a while now and whilst I feel a bit nervous about baring my soul, I feel this is something I need to write in order to get things off my chest. I have been thinking for some time about the possibility of having a baby whilst suffering from ME. Whilst I know many other women have this difficult decision to make, each person has different circumstances, support networks and values. The following is merely my own, very personal take on the situation and as such is just an opinion based on my own experiences. Please be gentle with me! 

I never really thought I'd have children. When I was a teenager, we had it drummed into us by our families, school and the media that getting pregnant at a young age was a disaster akin to the end of the world. Having sex, getting pregnant and having abortions were scandalous topics in many a secondary school playground, talked about in hushed, shocked voices and woe betide any poor girl who happened to find herself in this unfortunate predicament. Such was my determination that this calamity would not befall me, I can actually remember praying that I would be infertile so I would never have my life ruined in such a way. All the drama and hype about procreational matters served to put the fear of God into me and in fact the job was so well done that I continued to feel that terror well into my adult life.

Of course, not all the blame lies with the social attitudes of Britain in the 90's. The truth is that even without that pressure, I simply have never felt particularly maternal or mothering and as a young girl, then a young woman, having a baby was never something I imagined I would ever want to do. The times I have been asked before x-rays or other medical procedures 'Is there any chance you could be pregnant?' have always been met with a look of horror and the reply 'I hope not!'. Whilst this was quite endearing during my teenage years, as time has progressed it's not such a good look. The last time this happened  the look of horror on the nurse's face was equal to my own as she tried to work out what sort of a monster I was. After all, that's what we as women should do, shouldn't we? Get married, have babies, worship our husbands, don't answer back. Well, I for one was not going to conform to what society expected me to be. I was my own person regardless of gender so why should I give up my body and my life to perpetuate the patriarchal stereotypes and nonsense just because it was what was expected of me? No, I certainly did not have any desire to have children, thank you very much!

Or so I thought.......

It turns out that nature is a tough opponent to pick a fight with. It turns out those smug nurses at the contraceptive clinic were right when they talked about biological clocks and leaving it too late. At the time, I didn't want to listen as I found it offensive these women were telling me I should be trying for a baby at my age. Actually, I still think it was pretty wrong of them to try and hassle me to come off the pill but they were right about the biological clock. For since I hit my thirties a strange metamorphosis began. If there was a baby in the room, I no longer had to be the furthest thing from it. Quite often I even wanted to hold it! I found myself imagining what it would be like to have my own. Unused to these strange feelings, and unsure as to what to do, I decided that in order to buy a little more time, I would only get pregnant once my partner and I were married. Thus, the decision of whether or not to have a baby would be put off, possibly indefinitely. Secretly, I hoped this would be sooner rather than later and a sensible person would have had the proper chat with their loved one about marriage and children and the future. For me, I put off the serious talk as I was so scared my partner would want me to have a baby, yet even more terrified he wouldn't. It felt like my beliefs and upbringing were waging a biological battle with my ovaries and I didn't know which way to turn.

It was at this point that two momentous things happened. The first was that my partner proposed and I finally saw this as the sign I was waiting for. If ever I was going to have children then once we were married would be the time. Slowly I began to gear myself up for the possibility of motherhood. The second momentous thing is that three days after we returned from our honeymoon, I became ill and never recovered. Having spent the last 17 months unable to work or live a normal life, I have had plenty of time to pause and reflect on what is important to me and what I hope for the future. The cruel, cruel irony is that I finally managed to work out that I do want a baby, yet I am at a stage where my health will probably stop me from doing so. I know that if I hadn't got ill, I would possibly already be a mother by now. I look out my window and I see four of the women in my small cul-de-sac have had babies within the last year and I envy them. I look at Facebook and see photo after photo of scans, babies, children on their first day of school smiling and looking tiny in their too-big uniforms. I see status updates about pregnancy, and birth, and all the million and one events happening to the children of my Facebook friends. I am pleased for them yet at the same time find it an alien concept that they are so lucky whereas I am not. These days I almost find Facebook too happy, preferring to stick to Twitter where no-one minds if you have a good whinge. Perhaps being restricted to 140 characters makes negativity more palatable.

Still, I am not writing this in a 'woe is me, isn't my life terrible' attempt for sympathy and understanding. I know I have only myself to answer to for leaving it so long before considering motherhood. There is advice available for women with ME who wish to get pregnant and there is always the possibility I will recover before my fertility takes a complete nosedive. There is no way of knowing for sure what the future will bring but I feel I have to face facts. I am 37. It takes all my energy just to look after myself and at the moment I am severely limited in what I can physically do. Practically it would be unwise to try for a baby, financially a disaster. Even if I improve, there is still the very real likelihood of relapse. Personally, the thought of not being able to look after my child properly is far, far worse than the thought of not having a child in the first place. The strain it would place on my husband, the effect it would have on our child, the worry that Social Services might get involved are all significant concerns. Then there's the matter of hereditary genes - after all, with hardly any research being done to find out about my illness who can say whether I would pass this on to my child?

So now I am trying not to dwell on the nights I dream I am holding my baby and can almost feel the fierce, all-consuming love that only a parent can really know. I try not to imagine little footsteps echoing up the stairs. When I look out my window, I try not to see my child playing in the garden, shrieking with joy or skinning their knee and crying for mummy. I try to forget the names I have already secretly chosen for my imaginary son or daughter, to forget the look of wonder in my husband's face as he holds his nephew in his arms, the knowledge that he would make such a loving father.

Instead I remind myself of teenage me, who perhaps deep down knew that motherhood was not the path I would take. I think of the cruelty of a world where there are no guarantees. Where healthy people and healthy children can have their lives changed in an instant by illness or death. An uncertain world of financial collapse in a country where the rich have declared war on the sick, the poor and the vulnerable. A world of global warming and climate change, overcrowding and over-consumption. I remember that my life is nothing more than a drop in the ocean, a mere nanosecond in the existence of the universe and that in the grand scheme of things it really doesn't matter. This may seem melodramatic but it is of some small consolation to me and as time goes on, I find myself more accepting of my circumstances until the day I can finally make peace with this illness and move on. After all, having ME is sort of like parenthood - poor sleep, lack of social life, hardly leaving the house, financially draining. It's just instead of a child, the one that needs looking after is me.

Thursday, 3 January 2013

So this is Christmas....

I forgot one teensy weensy factor in my last post. I was so full of the joys of Christmas and how, through pacing, I was going to have such a wonderful, magical time that I forgot all about my body. The one thing that could truly throw a spanner in the works and what a huge, heavy spanner it was.

You see, throughout my illness I have been trying to make friends with my body and work out exactly what it is that is making it so unhappy so that I can do my best to make it better. I thought we had managed to come to some sort of understanding, a truce perhaps where if I treated it well, it would be kind to me. It seems I was wrong as just before Christmas my body and I had an almighty falling out. Aches, pains, fatigue through the roof. With only days to go until the big event, I was reduced to a tired heap under a duvet.

Of course, the signs that the positivity of my last blog might be a bit OTT were there before. The cards I had made and sent in plenty of time became a sore point as in return I seemed to have much fewer cards than usual. In fact, from my entire side of the family I received just one paltry Christmas card. ONE! Nothing else from parents, brother, uncles, aunts or cousins. So thank you, Aunt Joyce for being the only member of my family to bother sending me a card. I also make allowances for my 97-year-old Nanna as it's hard for her to hold a pen these days. To the rest of my family, it's detention all round!

Now, normally I wouldn't be so bothered about who sent me a card as that's not the reason I send them. But this year, not only had I gone to the effort of making them, it also seemed to me that after a year of feeling invisible due to my illness, each card I received was some validation that I actually still exist. Silly I know, but each piece of glittery folded cardboard was a small token of proof I was there and that someone else cared. Still, I reminded myself that Christmas is about giving, not receiving and did my best to move on. After all, there was still the matter of presents and I was pretty pleased with what I'd made on my sewing machine. Plus I'd had time to make a list full of things I really wanted so what could go wrong there?

Stylish dressing gown/shades combo
What a shame that on writing that list, I failed to notice my body smirking nastily to itself in the corner. As an early present to myself, my body had developed a sensitivity to light and sound making things like reading, watching TV or listening to music difficult and uncomfortable. I attempted to combat this by wearing sunglasses so I could at least watch some Christmas telly but even then could only manage short stints. So it was with gritted teeth and a huge sense of irony that I opened my presents consisting of books, CDs, a computer game - all things I really wanted but thanks to my body had no idea when I'd be able to enjoy. Bugger. Still, I reminded myself yet again that Christmas is about giving, not receiving and prepared myself for a lovely Christmas day with relatives.

It seems that yet again my body had other ideas. The exact details of my day in retrospect resemble some sort of 1970's farce yet at the time the experience was more like a mental and physical ordeal akin to the assault course on the Krypton Factor or a trip to the Crystal Maze. It had escaped me to realise that a day spent with an excited four-year-old and all his bleepy, flashy toys was not the best thing for a person with light and sound sensitivity. Even worse was that the apparent gift of choice for both children and adults this year seemed to be harmonicas (cue much blowing and shrieking in the guise of music). Never mind, I was already prepared for too much bustle making me feeling rubbish and had asked my hosts for somewhere comfy I could go and have a lie down when things got too much. I would just go and have a rest and all would be better.

This year's fashionable festive gift
Being lovely and thoughtful, they had assigned me a bed as far away from the action as possible for maximum peace and quiet. Unfortunately it was up several flights of stairs and in the freezing attic so getting my feeble frame there was equivalent to climbing Everest but without a Sherpa. Added to this, their lovely house had high ceilings and echoing rooms which served to magnify all the noise and funnel it straight up the stairwell and seemingly into my ears. Arse. Somehow I managed to scrape through the day. The worst was knowing that had I been well, I would have had a fantastic time and would have stayed revelling and playing bleepy, flashy games long into the night. As it was, I was home by 6.30 and in bed not long after. The effect of the day on my already low energy reserves was to ensure I stayed in bed for pretty much the rest of Christmas and cancel all further plans with family and friends.

Thankfully now I am starting to feel almost back to where I was before all the festive fandango. I have learned my lesson well and shall refrain from smugness and over-positivity just in case my body decides to play another nasty trick on me. And as far as Christmas goes, if I'm still ill come December, it'll just be me and my husband at home. Although, if I'm well then who knows where I might be. I hear Barbados is quite nice...........