Saturday, 17 May 2014

Invisible Illness

Some days you'd never know upon looking at her and she didn't mind in the slightest. 

The perceptions of others were out of her control. Just like this was. Just like every day was. Some days just seemed luckier than others. 

She rarely pretended it was all better than it was. It required effort she couldn't muster. She just tried to make peace with the fact that it could change within a matter of hours, never mind day-to-day. 

And somehow she was content and often even happy. It was the way she was; able to meet both ecstasy and despair with the same matter-of-factness. 

But underneath, if you were to really scrutinise her you might wonder if it'd all had more of a detrimental effect than you'd first thought. 

You might see a heart so heavy that the weight of it pulled her features downwards leaving no trace of the smiling eyes that had graced her face for the two previous decades. 

She was different now. And through no fault of her own. 

There was a sadness about her sometimes. Not often but sometimes; when the balance between hope and acceptance was too hard to find. 

All that she'd thought she knew about life had unravelled at such a speed that it was astounding that she didn't feel stuck in a constant state of disorientation. 

But as quickly as the sadness could set in, it was nothing on the speed with which it would leave. As if there was something deep inside her that could deflect it before it penetrated her soul.  

Friday, 16 May 2014

'Blue Sunday'

There was no such thing as Blue Sunday twelve months ago. Not in this sense I'm sure. A few days before my charity tea party in 2013 I named the event Blue Sunday on a whim in a blog post I published. It's grown quite a lot since then it seems. My own sister thought it must have been something thought up and driven by one of the M.E. charities. But no. It was just little old me. 

To say Blue Sunday 2014 was a success would be a bit of an understatement actually. Over 80 people online. Nearly 40 people at home. The fundraising total is now at over £800. For eating cake! (On Sunday night I had to use a calculator to double check I'd added my online donations and cash donations up properly. Six hundreds and forty pounds? Pardon? And then I cried.)

Friends travelled for more than a couple of hours just to spend an hour or so sitting in a crowded sitting room drinking tea and eating cake. My brother and his friends had their own mini get together while they watched the football. Friends of my siblings came. Friends of friends came. People brought their families with them. 

I was overwhelmed. These people came for me. They donated for me. For me. I'm just me! I just wanted to do a little something for those I've met along the way. I forgot that it was for me too. 

I tackled the best in the 'best' way possible. I didn't waste any energy on make up or doing my hair or on wearing fancy clothes. I don't really care that people saw me looking like that. It was a true reflection of me day-to-day. I had some sneaky rest breaks throughout the afternoon without my guests knowing. Not-so-little bro sussed what I was doing and covered for me. 

The virtual party was neglected a bit I feel. There were just so many people arriving at home that I 
couldn't keep up. I did my best but it's something I'd like to improve for next year. So many people joined in. A few had even got together with their own friends. And in one case two fellow sufferers met for the first time to have tea and cake together. Doesn't it just warm the cockles of your heart? Many of the people who donated could probably do without having to donate to my cause and so their precious donations mean so much. 

The suffering afterwards was quite huge, I won't lie. But our posts would have come up on twitter alongside tweets about Man City and people I'd never come across before donated and posted pictures or comments. Blue Sunday went international! I've never had so many social media notifications in my life! 

I'm still a relative newbie to this M.E. sufferer lark, less than four years in. It's not my intention to preach or patronise. Some of you must find me incredibly naive I'm sure. I'm just plodding along if I'm honest; trying to keep my head above water. I'm not setting out to make a change or 'inspire' people. That thought actually makes me uncomfortable. But the messages of support I've had...I'm going to print them off. They are just so kind. And the messages on the JustGiving page too. It was only a tea party!

Thank you to each and every one of you who joined in, who donated, who stuffed your face with cake, who liked one of my Instagram pictures, who commented on a photo or sent me a tweet, who used the hashtag #BlueSunday (and not in reference to Manchester City!) 

I'm not one to blow my own trumpet but I think I did a good job. I'm quite proud of myself actually. The siblings now think we should have a Summer BBQ fundraiser. Two Blue Sundays in one year? Let's see how long it takes me to recover from this one before I make up my mind...

All blue everything!

Anyone for cake?
A full house! So full I had to keep escaping for some 'Purple Time'

Wednesday, 14 May 2014

Why is M.E. Awareness so very important?

I know we cannot expect people to understand if we aren't honest with them. So I'm being honest with you. For now it's down to us sufferers to raise awareness. So here I am. It can be hard to put yourself out there like this but I'm happy to do it on behalf of my fellow sufferers. I know some of you share my blog or other blogs rather than writings their own. I'm happy to be your voice. Honoured even.

M.E. awareness is important because, quite frankly, I do not want anymore people to be met with such ignorant and inadequate medical care. And I'm not sure how much more we can take ourselves. We battle every second of every day against this illness but we do it alone because very few really understand or seem to care.

The stigma and misunderstanding are hugely hurtful and have such a detrimental effect. The medical world is baffled by us but instead of trying to get to the bottom of this mystery illness, the majority just brush us aside or try to pacify us with harmful GET (graded exercise therapy.) There are cures for a whole host of diseases in this day and age and yet we remain so far from the forefront of the medical world's mind that to them we really don't exist. They will not let us donate blood and yet still sometimes disregard our illness as 'all in the mind.' Explain that. Such confusion and contradiction messes up our lives. This isn't a game. This is serious. And we are desperate. We want a cure. We want our lives back. And we want to be taken seriously. 

Other sufferers are currently pushing for awareness because they don't want other people to suffer for ignoring their bodies, like they themselves were advised to do by ill-informed medical professionals. You can make M.E. much worse by doing that you see. But I didn't push through. I quickly (within a matter of weeks) learnt that Body knew best. I stopped. I listened. Where did it get me though? This is why we desperately need not only awareness, but proper research, proper treatment, proper care, proper medical advice, and not just psychological coping mechanisms...

"But everyone gets tired!" Your words are hurtful and harmful. Think before you speak. And shame on those who knew me as a person before The M.E. Years. Do you honestly, HONESTLY think that fit and active young woman would settle for a life confined to her bed or house, living off the state? Honestly? No. So think before you speak. 

"At least you don't have x y or z..." People can and do die from M.E. too you know. Our bodies take a huge battering and cannot fight diseases like they could when we were healthy.

So yes I might be shoving it in your face this week but as irritating as that may be for you, it's nothing on the frustration we feel as ME sufferers. 

Not my photo...

So read the blog posts that crop on twitter. Wear a blue ribbon throughout May, or all year round! Visit the ME Association website or Invest in ME. Support your friend who battles everyday by posting a photo of the two of you on social media with the hashtag #meawareness. Challenge people who disregard sufferers as not trying hard enough to get better. Share the facebook statuses that have helped you understand a little of what M.E. is. And avoid the Daily Mail!

Please. This is vital. This is real. Nobody should be this ill and have to fight to prove it. Why would we make it up?! Why would I pretend that I can't make it to the bathroom on time because my legs are too weak to carry me? Why would I pretend I need to be spoon fed I my mid-twenties? Why would I pass up the opportunity to spend time with the people I love the most? I don't really understand how some people can think that. But then why wouldn't they think that if sociey assumes we're "just tired." This is why we need change. And we need it fast! There is the danger that I will become very bitter and twisted and that's such a shame. I'm not that person. Please don't let that happen...

Edit - I was recently contacted by Counselling Direct and am happy to share their website with you. I hope it will be of some help to someone needing it

Tuesday, 13 May 2014

This is ME

Participating in a blog chain initiated by Louise Bibby as part of International ME/CFS/Fibromyalgia Awareness Day on May 12.

Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.

Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! 

This is ME.
What is your name and how long have you had ME/CFS?
I'm Anna and I've had ME/CFS for almost 4 years.

Where do you live?

I live in Stamford, voted the number 1 place to live in Britain by The Sunday Times. How fancy. 

Age (if you're willing to share)


Tell us 5 things about you that the people in your life probably don't know (non-illness related):

1. I'm not ashamed to say I bought tickets for the Westlife Farewell tour. Sadly I didn't make it though. 

2. In my day I was a pretty good javelin thrower!

3. I cannot sing and yet somehow got a lead role in West Side Story at school.

4. I am the biggest film wimp. I cannot watch anything remotely 'scary'.

5. On my first day in a new job I drove straight into my employer's garage door. 

Tell us 5 things about you that the people in your life probably don't know about your life with CFS/ME:

1. My vision is still as blurred and fuzzy and out of focus as it was when my symptoms first started. It's constant but I suppose I've got used to it now.

2. I feel worse if I sleep too much. 

3. My symptoms are ever present. Constant. Only the severity varies, from unbareable to almost-tolerable. Every single thing I do is counted as 'over exertion' according to my body.

4. I feel guilty for the impact this illness has had on the people I love the most and I hate the fact that there's nothing I can do to unburden them.

5. Apparently you can tell how poorly I'm feeling by how slurred my speech is.

What one thing do you think most people wouldn't know about living with ME/CFS that you'd like them to know?

People are always surprised to hear that I don't watch much television or do the things that you'd expect 'normal' people to do on their days off. They imply that I'm lucky to not have to go out to work 9 to 5 every weekday. They seem to forget that I'm effectively working against my own body 24/7. 

What is the most frustrating aspect for you of living with ME/CFS?

The ignorance, stigma and misunderstanding. The fact that people cobble together their own idea of what M.E. is without giving it any real thought. 

Contact details (if you want to give them) - blog, Twitter, FB etc
Twitter: @theslowlane_ME

Any other bloggers who want to join in the blog chain, please copy this and fill in your own answers. Then email or send Louise a Tweet so she can link to your blog post in her original post. 

Monday, 12 May 2014

Life for a young person with M.E.

I've given this a lot of thought and I've decided it's very hard to put into words. But that in itself sums up what life for a young person with M.E. is like. Incomprehensible. Unexplainable. Alas, I will try my best. 

My story is very similar to yours. I was the all-rounder, got very good grades, was captain of the sports team, represented the school as Deputy head girl, got lead roles in the school plays, and was popular with both my peers and my teachers. I was 21 when I became ill and I choose to see myself as lucky that M.E. hit me when it did; after school and university but before I'd started full time work, bought a house or had children. 

To miss out on 'the best years of your life' is soul destroying. Many, if not most, young people with M.E. are missing out on an education. I on the other hand have the qualifications but they are redundant, useless and likely to never be of use. I feel like my life never got going. The wind was taken out of my sails within a few weeks of graduating from university. 

I had no idea that life could be like this. As you grow up you don't dream about a life like this. You dream about travel and university and earning your own money, living in your own home, meeting the perfect partner, starting a family... Very few, if anyone, is prepared for a life like this. A life so at odds with the norm. It is scary. Disney did not prepare us for this!

My friends are starting to get engaged and talk about marriage and starting a family. When we discuss our days mine is worlds apart from theirs. The token response is that I'm still so young and have plenty of time to build a life like that for myself, that I don't know what the future holds... I won't lie, it gets on my nerves now.

As a young person with M.E. there are the expectations of society to contend with, not just your ill health. Elderly people tutting at you for not giving up your seat for them. Being told you're "much too young and attractive" to be in a wheelchair. People seem confused by it; that we are so young and yet apparently so ill. Surely not? Surely you're at your fittest and healthiest at this age? I thought that was how it was supposed to work too! 

But with youth comes resilience, naivety and the bouncebackability needed to just keep going. To just keep trying. We may be physically weak but we have a superhuman strength with which we cling on to the hope that things can and will improve. 

There are opportunities available to us now that were never there before. We can get an education online. We can craft or knit or sew or make jewellery and then sell our makes as a way of doing something worthwhile. We still have hopes and dreams...they're just a little different from the hopes and dreams of our peers. We've adapted them. We hope to stay out of bed for a whole afternoon or walk to the local post box or read a book or never have to be spoon fed again...

As young people with M.E. we're learning to create our own norm. We join online communities and meet friends for life who live in our computers. We meet up everyday and virtually hold each other's hands as we navigate our way through the fog of chronic illness.  

Life for a young person with M.E. is unimaginably hard. The future stretches out in front of us and while the future is always unknown, it can look incredibly bleak from where we young poorly people are standing (or sitting, or laying!) I am a firm believer though that every cloud has a silver lining, and even this huge, unruly, destructive grey cloud that they call Myalgic Encephalomyelitis has the glimmers of a sparkling outline. There are a handful of people who are fighting our corner for us. There is a huge online presence of sufferers offering support to those in the same boat. There is a very, very small smattering of medical professionals who are taking our symptoms seriously. Slowly but surely we will get there. 

Thursday, 1 May 2014

The Final Countdown

As you may know by now I am having a charity tea party in 'celebration' of M.E. Awareness week. My closest friends and family are coming over for an afternoon of tea and cake on Sunday 11th May, now dubbed Blue Sunday. (The awareness colour for ME/CFS is blue.) 

As I have made so many good and great friends online I am also holding a virtual tea party so that they too can feel like they are joining in. I'll be posting pictures on the Facebook event page and using the hashtag #BlueSunday on Twitter and Instagram so they can be a part of the action. 

I'm trying to be super organised so that I won't have anything at all to do in the week (or two) running up to Blue Sunday. The bunting is made (I gave up on the sewing machine and used paper instead!) The tea sets are clean and the cake forks (ooo how posh) have been counted. I've even gone as far as to decide what I'll be wearing so that's one less thing to think about on the day. Military precision my friends. I now have just over a week to rest. Or worry and overthink and get my knickers in a twist about whether I am as prepared as I think I am.

I really would love it if you could pop by. I've heard from people who are going to gather their own friends and family together for tea and cake in an effort to join in. Many others are still confused about what a virtual party actually is! It's just the chance to sit online on a Sunday afternoon chatting to people in the same boat and eating cake at the same time. It's nothing special. Just a chance to come together for M.E. awareness week.

Anyone who donates or attends (ie. they post a picture or comment about them stuffing their face with tea and cake on the 11th) will be entered into the prize draw to win 1 of 7 prizes. The prize draw will take place on the evening of the 11th and prizes will be sent out as soon as possible after the draw. (These prizes are for anyone who joins in with the virtual tea party, with huge thanks to those who have so kindly offered them. I am so overwhelmed by people's kindness.) If you are a winner I will need your address so that your prize can be forwarded to you.

There is also the chance to win something by guessing how many smarties are in the milk bottle. Guess correctly and I'll send the bottle of deliciousness to you!

Go on, give it a go! Send me your guess and your full name via social media 

All that's left for me (and by me I mean everyone else) to do is bake bake bake! I really hope you're able to pop by on Facebook or Twitter or Instagram.  

So I shall see you on Sunday 11th May! There's no set time but the tea party at my house os starting about 2pm UK time. 

Anna xoxo

You can donate by texting TEAP50 £3 to 70070 or visit the Just Giving page.

Donate/attend to win one of the 7 prizes below: (1 of 3 wish bracelets. 1 wish bracelet plus flower necklace and bracelet. A £10 Hug Box. Subscription to The Pillow Fort magazine. Spoon jar keyring/necklace.) 

With thanks to Sarah and Lucie
With thanks to the Pillow Fort team and Robert