Sunday, 17 May 2015

Princess Round Up

On Tuesday 12th of May I became a princess for the second year running. Last year I dressed up as Sleeping Beauty however this year I wanted to do something a bit different because I'm not really a princessy type. Luckily for me, there are lots of different kick-ass princesses out there to choose from and after a bit of research I settled on turning myself into She-ra Princess of Power. 

In order to put a bit of an M.E perspective on this, as usual I had to plan and pace in order to achieve this magical transformation. My outfit was ordered well in advance and my justgiving page set up a few weeks before it was needed. I also planned a photo shoot for the Sunday before M.E Awareness Day because I knew I would not have the energy for it on the actual day, what with having to post all the photos and links to my fundraising online. I spent a mere 20 minutes in my garden posing for photos, waving my sword around. It took me the rest of Sunday and all of Monday to recover, and I still have a painful, frozen shoulder a week later. On the day itself I donned my outfit again and decorated the outside of my house with balloons and leaflets.

With all the excitement and exertion it's been quite a tough and painful week for me and my body. This is something I have in common with my other fundraising friends. We are all quite ill and yet we do what we can because if we don't, no one else will. It's for this reason that raising awareness for M.E is such a slow process. We simply aren't able to make a huge fuss. We are too ill for marathons or jumble sales. We spend the limited energy we have and suffer the consequences afterwards. For us it's very worthwhile because little by little we are starting to make a difference. We are starting to see a change in attitudes towards people with M.E, not just within our own friends and family but also in the media and the medical profession. We still have a long way to go but will definitely get there.

She-Ra Selfie

As for me I very much enjoyed my day as a princess. I would like to say a huge thank you to everyone who has supported me, not just for M.E Awareness Day but over the last few years of being ill. I have had tremendous support for my family and close friends. There are also my 'virtual' friends, many of whom suffer with chronic illness themselves yet still manage to spare a pound or two out of their disability benefit. Even though I have not met most of these people in person, they mean a great deal to me and I feel honoured to count so many wonderful people as my friends. I am also very touched to have received so many donations from old friends from school or college, most of whom I haven't seen for a good twenty years. It is all extremely appreciated. 

Unfortunately, the response from some areas has been distinctly underwhelming. I know this is something other princesses and fundraisers have found as well. It's quite disheartening to know that people who know you well are not even prepared to spare a pound despite seeing how much your life has been affected by an illness that is desperately under-researched. I won't dwell on the negatives though, other than to say there is still time to donate! My justgiving page is active for around another week and I am very, very close to raising £900. It would be great if I could manage the last £15 needed. All it takes is 15 kind people to donate a pound each by texting MPIX75 £1 to 70070. It really is that easy!

So back to the positives. Almost £900 raised on my justgiving page, over £5000 in total raised by all of Team Princess. A phenomenal achievement! Thank you to each and every one of you that donated, thank you to every person who retweeted or shared my posts, thank you to everyone who has taken time to read my blog and learn more about M.E. You make it all worthwhile and you make this princess a very happy one. Thank you for helping me get nearer to achieving my happy ever after.

All that's left to say is here I am in all my She-ra glory! Hope you enjoy the photos. 

Me and my balloons.
Luckily my sword didn't pop any!

Representing Action for ME
She-Ra, Princess of Power
It's like we're twins! XD  

Ready to Rumble!

The reason why I couldn't move my arm for best part of a week.....

Sunday, 10 May 2015

No charge

I've been ill with Myalgic Encephalomyelitis for almost 4 years. Known more widely by its initials, M.E, it is also known as Chronic Fatigue Syndrome (C.F.S) and more recently, Systemic Exertional Intolerance Disease (S.E.I.D). During the time I've been ill, I found myself trying to explain what having M.E is like many times. Of course no explanation can really compare to what it's like to have this illness but  I'm going to do my best to try and put things in terms I think you'll all be able to understand. There are already a few very good blog posts about invisible illnesses like M.E, for instance Christine Miserandino's Spoon Theory, as well as a rather excellent and amusing blog post by Batsgirl on likening disability to having a gorilla in your house. Here's my take on what it's like to have this illness and how it impacts on every aspect of my life.

Imagine your body is a smartphone. In my case, I'd be an iPhone because that's what I'm used to using but other brands are available! Now, smartphones are wonderful things. They can do all kinds of fancy-pants stuff and will happily whirr along doing them, seemingly without much effort at all. Just like with our bodies, a lot of these processes are unseen and very varied but the one thing they all share in common is that you need an app to run them. So I'd like you to imagine all the things your body does as an app - there's an app for walking, thinking, having conversations, digesting food, watching TV, listening to music. I could keep listing all the various apps you'd need but I think you get the picture. When you break it down, there are A LOT of different processes our bodies use that we simply take for granted. And, like the apps on our smartphones, each process requires a different level of data and different levels of battery power in order to run.

There's an app for that.......

Now, it's not surprising that as healthy people we take all these things for granted. As long as our smartbody batteries are fully charged with lots of energy, we usually manage to get through a whole day on just one charge. Occasionally we might need the odd little nap or rest in order to recharge but on the whole our bodies work well and all our apps run without problems. In the case of someone like me, who has a chronic illness, it's a different matter entirely. My body is like an older model of smartphone, one you've had a while where the battery runs low very quickly and too many apps running at the same time drains the life far too quickly and causes the phone to crash.

I'm sure you all know how frustrating it is when your phone battery is on the way out and you have to keep plugging it in throughout the day. Especially as the ridiculously short charger lead makes it nigh on impossible to use it whilst it charges. Now imagine you had to do that with your body but instead of plugging into a wall, you had to plug yourself into your bed. This is my reality. Just like a smartphone with a dodgy battery, I need to 'plug' myself in to recharge every hour or two. To do this, I need somewhere quiet and dark I can lie down to rest so that my brain is not stimulated in any way. And just like that dodgy smartphone, once charged, if I use too many of my 'apps' at once then my battery drains much faster and my body crashes. That's when things get really painful. 

Nobody likes their battery getting low.

In order to deal with this, I recharge regularly. I plan carefully which apps I am going to use and for how long. I know I can use my Watching TV app for around an hour before my battery drains, whereas my Walking app will drain my battery in about 2 minutes. Strangely, my Standing Up app lasts longer - ten or maybe even twenty minutes on a good day. The good news is that with this careful planning, my battery life is slowly improving. A year or two ago, I could only manage twenty minutes out of my dark, quiet room and needed a good couple of hours to recharge after every little activity. I could also only run one app at a time. For instance, I couldn't cope with two people talking at once. If the TV was on and my husband started to talk to me, it was too much for my brain. My Listening to Music apps and Talking on the Phone apps were completely rubbish. They just used up too much energy and data to work properly and so I couldn't do either without immediately becoming very ill. Thankfully I can do both of these in small doses now which makes life a lot easier and much more enjoyable.

So this is why at times, I look and act perfectly normal. It means I've been plugged in for a while, charging up my batteries in preparation. It's why I can walk or stand up a little yet I still need a wheelchair if I leave the house. It doesn't mean I'm faking my illness, or making it out to be worse than it is. What it does mean is that my levels of ability depend totally on how much charge is in my battery, and how long the charge will last. I'm hoping one day I can upgrade to a battery that will last me all day and run as many apps as I like, just like it used to before I got ill. If only I could just go to the shop and buy the latest model of smartbody. The scary thing is, this can happen to anyone at any time, without warning. Once your battery starts to wear out, there is currently nothing much you can do other than to rest and recharge as much as possible. It makes a normal life very difficult - if you know your battery only lasts a short amount of time, then leaving the house becomes a rarity. It's very hard to find somewhere quiet and dark to recharge unless you're at home, and with every new sight, sound, or smell you encounter the amount of charge needed to run your body increases greatly. 

I constantly operate at 20%. The emoticon sums up what that's like!

Bizarrely, there are many that think the way to deal with this is to run more apps, use up more of your battery by exercising. The ridiculousness of this advice really hits home if you imagine doing the same with your smartphone. If someone told you that using your phone more would make the battery last longer then you would think they were completely insane. Unfortunately, when it comes to people with ME, so many of us get told to push ourselves, to exercise. Eventually, the inevitable happens. Our batteries get so knackered that we have to recharge all the time and become bedbound. This is what happened to me and so many of the people I have come in contact with in the last four years. We know better now but this is why raising awareness about ME and how to deal with it is SO important. If something like this ever happens to you or to someone you love, make sure you remember to be gentle to your body and let it recharge as often as it needs. Be careful with how many apps you use and take plenty of rests to top up your charge. You really don't want to have a major crash, believe me.  The effects can be devastating.

If your battery runs out then it's game over.