Saturday, 28 September 2013

Record breaker

Ladies and gentlemen, momentous things have happened this week. 

There have been:-

  • four days of driving (not driving solidly for four days, you understand.)
  • a whole week and a half of managing to shower every evening
  • nearly a week of getting dressed out of my pyjamas every day

But what I really wanted to tell you is...

Drum roll please...

I have been eating my dinner AT THE TABLE and WITH A KNIFE AND FORK! 
Ta da! *Curtseys graciously* 

Were you expecting something a little more exciting? Ha! Welcome to our world my friend. 

Sitting at the table to eat has become a huge achievement. It is so much harder than you'd think. For one, I'm not able to put my feet up so I can suddenly become lightheaded or dizzy because my blood has decided it doesn't want to flow properly anymore. It's hotter in the kitchen and I already get hot enough after I've eaten, for some reason. It's also noisier, especially with a family of (sometimes) six, so there's the chat and the clatter of plates and the banging of cupboard drawers to get more cutlery...

At mealtimes I mostly sit on the sofa with my feet up and somebody brings me my meal on a tray, like the Queen of Sheba. I have my food cut up for me, even my lovely friends have done this for me if we're out for a meal, and I usually eat out of a bowl using a spoon because it is somehow easier and less messy! 

Eating itself can be exhausting so it has been an absolute godsend to have my family around and willing to adapt mealtimes to meet my new, almost childlike, needs.

This week has been different though. I have eaten at the table for six evenings in a row! Six! Not only that but I used a knife and folk and on one occasion it had a plate instead of a bowl and cut up my own food. 

No biggie

I haven't managed to sit at the table more than once or twice a month so this is definitely a new record. 

Off I go to fill in a Guiness World Record application form! 

Tuesday, 24 September 2013

Hostility within the ranks

"They can't really have had M.E can they?!"

Who are we to judge? 

I have been met with disbelief at one time or another and yet here I am questioning, albeit silently, whether or not a person has really got M.E. When did it become an exclusive club or a competition? Surely I should save the energy I'm using wondering whether other people have a 'true' case of M.E/chronic fatigue syndrome and spend that energy doing something much more worthwhile. 

I can see why we do it though. First and foremost there is no definitive test to identify our illness and that alone leaves room for scepticism. Diagnosis is given through a process of eliminating other possible diseases. Despite our condition ultimately being "swelling of the brain and spinal cord" many of us go without an MRI scan and other tests results come back completely clear despite these disabling symptoms.    

Chronic fatigue is not the same as chronic fatigue SYNDROME. (And then there's the M.E. vs CFS/ME debate which I won't get involved in.) Are these 'fellow sufferers' giving us a bad name by branding themselves as M.E. sufferers when they are infact not in the same boat as us afterall? 

It is infuriating to hear people say that when they had M.E. they "had no choice but to go out to work and earn a living." With me there is no choice at all! I am simply too ill to function properly enough to leave the house once a week never mind everyday for week. The authorites could threaten me with allsorts and still I wouldn't be able to do it. I am too ill to push myself like that. It is insulting that people imply that a Mind Over Matter attitude will get me out of the house and to work. It is insulting when people imply that we're not trying hard enough to get better in the way that they did. Or that our attitude isn't positive enough. All this from apparent fellow sufferers? If they were truly in the same boat as us I feel they'd be a little less tactless and a little more sympathetic.

It was reported some years ago that Michael Crawford had/has M.E. I remember reading his story in the paper in the early days of being ill and reading in disbelief how he went fishing everyday and enjoyed a quiet, outdoorsy life abroad which lead to recovery. Fishing everyday? Everyday? But then I'm remembered that some sufferers are still able to work. It doesn't mean that they don't have this wretched illness. No two of us are affected exactly the same so why do we still compare and judge? When people sleep or nap during the day I commend myself for not doing that because I'm actively retraining my brain into remembering that sleep is only for nighttime. But if it's what they feel works for them, who am I to judge? I'm no expert or guru.  

There is a scale of M.E severity or ability; from 0% to fully recovered at 100%. I have moved up from 0-10% to 20-30%, although it's hard to gage with such a fluctuating condition. You never quite 'fit' anywhere.

And now Martine McCutcheon has spoken out about her own experience of this plague, and already some of us are forcing our views and opinions about her situation on anyone who will listen. 

When I hear stories of complete recovery I admit to being sceptical about how long that remission will last, or whether or that the person could have really had M.E. in the first place. Can you recover from something incurable? Surely it'll all come crashing down around them again one day? Maybe not tomorrow, maybe in ten years time but certainly one day. Would you turn against me if I recovered, and declare that I can't possibly have been that poorly if I eventually recovered?

It's unlikely that cancer patients are met with such disbelief from other patients so why do we M.E. sufferers do it? 

I'm getting fed up of people implying other sufferers are lucky because they aren't as severely affected as others. None of us are lucky. No one with a condition like this can be described as lucky. Not when it comes to outer health anyway. Don't make another sufferer feel bad because their suffering is different to yours. Don't tell someone else how they should be feeling fortunate. "At least you can do x, y or z..." is something I'm seeing more and more. I know full well what I'm able to do and that I'm fortunate to be able to do it. I don't need it to be pointed out to me. But thanks anyway. Don't rain on my parade. Come and dance in the rain with me.

At the end of the day. who are we to judge?

Wednesday, 18 September 2013

(Not) So Straightforward

(There have been posts like this one already but some of you joined us along the way so may have missed them.)

Sometimes, not often, but sometimes I can make myself something for lunch. Now when I say make I mean a piece of toast with jam, or a boiled egg (not with toast. That would be too hard.) The other week it was fish fingers. 

Let me break it down for you:-
  • Walk to the freezer. 
  • Pull open the door. 
  • Bend down to get the fish fingers. 
  • Stand up.
  • Close the freezer door.
  • Put the fish fingers down on the kitchen table.
  • Walk to the cupboard.
  • Open the door.
  • Pull out a baking tray.
  • Close the cupboard door.
  • Walk to the kitchen table.
  • Put the baking tray down.
  • Walk to the drawer.
  • Open the drawer.
  • Pick up the baking parchment.
  • Close the drawer.
  • Pull on the roll of parchment.
  • Rip off enough to cover the baking tray.
  • Place the parchment on the tray.
  • Open the packet of fish fingers.
  • Place them on the tray.
  • Close the packet of fish fingers.
  • Walk to the freezer.
  • Pull open the door.
  • Bend down to put the fish fingers away.
  • Stand up.
  • Close the freezer door.
  • Walk to the oven.
  • Turn the oven on.
  • Bend down to pull the oven door open.
  • Stand up. 
  • Walk to the kitchen table.
  • Pick up the tray of fish fingers.
  • Walk back to the oven.
  • Bend down.
  • Extend arm to put fish fingers in the oven.
  • Close the oven door.
  • Stand up. 

While the fish fingers cook I am unable to relax properly because I am conscious that I could forget that there is something in the oven. I usually use a timer to remind me. I sit back down in a comfy chair, which means walking down the hall to the sitting room. I also always put my feet up because I've just had to stand for 'a while'. 

When the cooking time is up...
  • Walk to the kitchen.
  • Pick up the oven gloves and put them on! (Mr Brain likes to forget this one...) 
  • Walk to the oven.
  • Turn the oven off.
  • Bend down.
  • Pull open the oven door.
  • Take the fish fingers out of the oven.
  • Stand up.
  • Put the fish fingers down on top of the oven.
  • Bend down.
  • Shut the oven door.
  • Stand up.
You get the idea. Then comes the getting a plate out of the cupboard bit, some cutlery, the ketchup...

If I 'make' my own lunch it takes me longer to eat it. I feel the effects of having simply put some fish fingers in the oven, maybe for the rest of the day. (it used to be for longer.) Although I have not used it, the fatigue has travelled as far as my jaw and so chewing is an effort, as is cutting up the food and then moving it up to my mouth...Such exertion is viewed as exercise by my body and it reacts as if I have just taken part in a triathlon!  

Like always though, it's not sympathy I'm after. I personally think it's amazing how I manage to cook myself something as ambitious as fish fingers! I couldn't have done it in The Beginning and one day I hope I'll be able to do it everyday or even make a proper meal with more than one item to it! 

Is it worth it?

Yes. It's all a part of the bigger rehabilitation picture and the sense of achievement is savoured until the next 'adventure'. As the months and years pass it's becoming perhaps easier to do such a task. My body has been coaxed, incredibly slowly (over three years), into being able to do things like this. They're not yet second nature and I don't manage to do them nearly as often as I'd like, but one day it might not be necessary for such a task to be a whole list of little tasks. One day it might just be classed as one straightforward task; cooking some fish fingers for lunch. 

Friday, 13 September 2013

Pity Party!

I will always remember the dates. The date of that first opticians appointment. The date I stopped driving. The date of my first doctors appointment. The date I was diagnosed. The date I first went to the CFS/ME clinic...

On the 10th September 2010 my M.E. journey began. My vision was fuzzy and impaired but different from what you might experience when the prescription in your glasses is incorrect. A trip to the opticians found nothing wrong despite the feeling of intense and acute pressure behind my right eye. 

On the 25th September things really kicked up a gear. I had been out for a few drinks the night before and I have been hungover ever since. True story. An 'emergency' doctors appointment had to be made for the 28th; the first of many that would come over the next few weeks and eventually lead to a referral to a neurologist. By the end of October I'd had to give up my job and had turned down the interviews I'd been offered after graduating. 

My wait for answers wasn't nearly as long as some people's is but it felt too long when the words brain tumour entered into the equation. On the 18th November 2010, a few days before my 22nd birthday, I got my diagnosis. Chronic Fatigue Syndrome. (The doctors would later refer to it as M.E. or CFS/ME or CFS or ME/CFS...I didn't care if they called it Yuppie Flu, it just sucked.) 

I was told by the neurologist to "have a quiet Christmas" and see how I was after that. We've had three quiet Christmases now and we're heading towards our fourth! 
I guess the clue was in the word 'chronic' eh? 

Anyway, that's all boring. This is meant to be a celebration! 

I saw a couple of friends recently and I was asked what I'd been up to. My answer was "nothing much", but that was a lie and I didn't even realise it! I had climbed mountains that morning just by getting dressed, and battling with myself to stay calm as the nerves were beginning to rise at the thought of being in a noisy pub, and walking from the car, and coping with the heat, and not bursting into tears when the M.E. suddenly decided it didn't want to go out and see friends afterall. 

Like I've said before, these are my greatest achievements but with the predominantly awful month of August, now branded as Awful August, I had lost sight of that fact. I now feel back to my best (obviously not physically) and that is worth celebrating; that I have yet again picked myself up, dusted myself off and carried on. 

I am celebrating the fact that I have remained sane and survived three years of near-hell. Three years is a long time. It's fair to say things have lasted a lot longer than we could have ever imagined. If it was our wedding anniversary M.E. and I would be buying each other leather gifts! 

I used to wonder whether certain people looked at me now, or heard through the grapevine about my 'situation', and felt I'd got my comeuppance - after years of being sports captain and deputy head girl and getting good grades and never getting into trouble. I don't think that anymore. If there are people who think such things then they are not good people. 

I choose to concentrate on the good. There is much good if you take the time to find it. The bad likes the limelight every once in a while but the good always wins in the end. Well, it does in my head anyway. Sure there might be times when the bad outweighs the good but that doesn't mean that the good isn't still there, somewhere.

So three cheers to us! The sufferer, the family, the friends, the people I've never met but now know so well. To you all; the people who take the time out of their own lives to read about mine. 

Yep. That's right. Candles! I'm milking it for all it's worth
Chronic illness has done its very best to beat me down and break my spirit but still it is very much M.E. myself and I, rather than just M.E. I'm giving it a good run for it's money and, ultimately, we are working together, as a team, to get back to better health and 'normality'. It's a partnership, like living with The Gorilla. (The Gorilla In Your House.)

M.E. wins many of the battles but I'll win the war, even if that simply means I stay hopeful during the darkest of days. Go me! 

Any excuse for a slice of cake hey? 

Happy Anniversary M.E. you a*****e

Thursday, 12 September 2013

Invisible Illness Awareness week - The many faces of Anna Jones

It's Invisible Illness Awareness week (9-15th September 2013.) The theme for this years Invisible Illness Awareness week is "I choose to:" 

Today is one of those days when you can see I'm not feeling too clever 


but on other days it might not be as easy to spot that I'm a poorly person. 

Sometimes you can hear it in my voice. Sometimes you can't. Sometimes you can see it in the way my arms collapse into lap when I'm sat down. Sometimes you can't. Sometimes you can see it in my walk. Sometimes you can't. Sometimes you see it in my eyes. Sometimes you can't. 

Our postman actually used to laugh at my appearance until I answered the door with my walking stick in my hand. Now he waits patiently for me to get to the door and is always polite. I don't use Mr Walking Stick all of the time and I'm not in my wheelchair everyday. 

I'm almost lucky that I do often look so poorly. Many people face the disbelief and misunderstanding because they look 'normal.' (What does normal even mean? It's all relative.) You all know I'm ill because I've told you or you've heard through the grapevine, but not everyone opens up about it and they shouldn't have to either. This post is for them. We shouldn't have to broadcast our health issues just so you will believe us. Be a little more openminded. 

I choose to smile, regardless.

Sunday, 8 September 2013

To the carers

Recently I was out (yes, really!) and I got a taste of how these past few years must have been for my family and friends. My cousin wasn't feeling very well and I was worried about her. There were practical considerations like making sure she didn't have too far to walk from the car and was she warm enough? Should we leave soon because she seemed to be starting to flag? The fussing probably drove her mad but it was so painful to see her like that; not herself. I was only with her for a few hours but that was enough to see how hard illness can be for all involved and not just the sufferer. 

I have two younger brothers and an older sister. Their role has changed because of my being ill. Their lives have been affected as well as mine. During those wretched Dining Room Days the boys wheeled me to the bathroom and then back to bed. My sister brushed my hair for me and helped me get dressed. She even offered to throw on her bikini and come in the shower with me! That's true love. 

August 2010 - within a couple of weeks all of our lives would change
They all make me drinks, carry my dinner upstairs when I am stuck in bed, buy me things to make me smile, babysit me so my parents can go out or go away for the weekend, stop using their scented candles because the smell triggers a crash for me, turn down their music or the TV so it isn't too loud for me, manage to smile and console me when their birthday meal has to be cancelled because "Anna can't manage it today"...

Feb '12 with Not-so-big sis. December 2011 with Practically-Older bro. December 2011 with Not-so-little bro.
And my parents.How can I put it into words?

My dad is very good for hugs! He tells me constantly that he would swap with me in a heartbeat. He takes me for drives just so I can get out and see the snow in the Winter. He offers to take me out for coffee and every single time I have to say no because I can't manage it, but he never stops offering. He always, always wants to help; to do anything and everything that might make things easier for me. 

November 2011 with my dad
My mum...words just can't do her justice. 

She was there with me at the hospital when the neurologist diagnosed me. She was there when I had to go to the dentist for a check-up and I started to crash in the waiting room. She is the one who brushed my teeth and dressed me during The Dining Room Days. She is the one who came with me to my ATOS medical assessment. She is the one who the GP accused of hindering my recovery by caring for me. She has filled in every benefit form I have been sent. She is there during every relapse and every setback and to wipe every tear that rolled down my cheek... She is the one who is with me the most; the one who sees all of it and never, ever complains. When I was 11 we had to write about our idol for a school project. I was right to choose my mum as mine. 

August 2013 My camera shy mum

I can't write anymore. It hurts too much to think about it. But they, the carers, don't have the luxury of forgetting do they? For them it is constant. They cannot leave because we need them. They can escape for a few hours if there is someone else to come and babysit me but they have to comeback afterwards. I wholeheartedly believe that this 'ordeal' is harder on them than it is on me. 

'Thank you' doesn't quite cover it does it? I have only made progress because of them. They allow me and encourage me to concentrate solely on recovery. They take care of everything else. They are the reason I keep going. They are reason I will never give up. I owe them everything. 

This isn't what I want for me or for them. It makes it even more heartbreaking to be told things like "it's time you got better so that your family can get their lives back" and by your family GP no less.

To all the carers,

We couldn't possibly do it without you. 

Tuesday, 3 September 2013

"Always look on the bright side of life..."

You could describe today as a Vertically Challenged Day. I'm not prepared to lay here and analyse why it's suddenly become a Bed Day though. What's the point of that when there is no clear trigger? It's just the way M.E. goes. It's almost amusing though, that it still comes as a surprise when things change in a matter of seconds from Okay to Definitely Not Okay. Bless my optimism/naivety. There are tears today because it's scary but I applaud my ability to somehow remain calm in the midst of such sudden crashes. 

I want so badly to go to sleep, and not because I am tired or because of the fatigue and exhaustion, but because it would be easier to be unconscious and therefore unaware of the awfulness. Alas, I have worked solidly for three years to retrain my brain into getting back into some kind of routine; retraining it to know that day time is awake time and night time is for sleep. It's like being a newborn baby! So while it may seem like the lesser of two evils to allow myself to sleep right now, I am not prepared to undo all of that hard work and have to start over again. In the long run, staying awake (in spite of the desire to hide away from the poorliness) is actually the better option. 

So that's the bad side of my day. As always though, there has been good and it is the good that I choose to cling to. 

Today's silver linings 
  • The sun was shining when I woke up.
  • A card from a university friend arrived in the post today. It means so much that someone has taken the time out of their busy schedule to tell me that they're thinking of me. 
  • Getting dressed even if I did end up back in bed.
  • A text message from a university friend.
  • A facebook message from a university friend.
  • A cool breeze coming through my bedroom window.
  • My green bedroom walls are a nice change from the neutral colours I had before. (Give it another three years and I might change the colour again to give me a different four walls to stare at on days like these.) 
  • My mum and Practically-Older bro are at home with me (so I have two 'slaves' to choose from should I need someone to peel me a grape, etc.)
  • I have an amazing sock collection. Random but true.
  • I can still use the stairs to get to the bathroom.
  • Yesterday I made my own sandwich! (I know that's not today but I just had to tell you.)
  • Making my own cup of coffee.
  • Despite having to eat my dinner in bed, I didn't have to be spoon fed. Hoorah! 
  • Practically-Older bro stopped half way through his own lunch to make mine for me.
  • Prior to returning to bed I caught up on some TV downstairs.
  • My family.
  • My nails look fabulous! I painted them last week and the nail varnish rarely gets chipped because I don't really do much. Every cloud! 
  • I have a vast collection of DVDs and I've been well enough to watch a couple of them today.

I hope you too have had something, however small, to smile about today. 

Monday, 2 September 2013

Please just believe me

Someone said to me a few months ago "Well if you've got in your head already that it'll make you ill then you're not doing yourself any favours." This friend had suggested we do a certain activity and I replied that I wouldn't be able to. 

It has stayed with me and left me feeling a mixture of frustration, fury and sadness. Maybe even betrayal. This isn't a case of mind over matter. Some things are, yes, but not M.E. 

Well over two and half years in I now feel better equipped to know what will trigger a crash. But some people just don't want to hear it. It is incredibly hard to accept that fact and not waste my precious energy trying to educate those whose minds are too closed to being educated. It might sound defeatist to them but I just know I couldn't manage it! Not yet anyway. Why would I lie? I obviously love you enough to share the truth with you. 

Nearly a year into this blog and I still hear the mumblings of people asking how I can possibly write a blog when I am meant to be so ill. I am trying hard to let these comments wash over me but it is frustrating when I feel I have already covered such a topic more than once. The last few paragraphs and the video at the bottom of The side you don't see might help to clear things up. Each post is saved  as a draft and I add to them over days or weeks or months. Rarely are they written and posted on the same day. I'm not even sure why I feel I have to explain myself...

Please just believe me and have faith that what I am telling you is worth believing. The aim of this blog was never to go out of my way to prove to you how ill I really am. It was, and is, to help you understand the complexities of this condition, but for that to happen you need to come here with an open mind.

As I've read many times in the last couple of years, "My invisible illness is more real than your imaginary medical expertise."