Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: May 12th Page 2 of 3

I was a Princess for a day!

The title of this post says it all. On May 12th 2015 I dressed as a Princess for the day in order to raise money for the small charity with a big cause: Invest in ME. I was overwhelmed by the support I received in doing this, and the donations that seemed to flood in!

As promised here are some pictures from the day…

Just after getting dressed up

 

Smiling for the camera!
One may have been a Royal Princess for the day but one still had to study

 

A Princess Selfie

Having spent most of the morning switching between posting on social media sites and working on my End of Module Assessment for uni (not an advised combination by the way!) I was beginning to feel exhausted…

Beginning to feel pretty rough, mid afternoon

Overall it was a brilliant day and I managed to raise £207 in online and offline donations! I was (and still am) overwhelmed by the support and donations I received. SO if you’re one of those lovely people who donated THANK YOU so much, you are amazingly generous people. If you’re a bit late to The Princesses and M.E party then you can still donate by texting PCJW78 followed by £1, £2, £3, £4, £5 or £10 to 70070 (e.g. PCJW78 £3 to 70070) or by visiting my JustGiving page: http://justgiving.com/PrincessClare

Sadly all good things must come to an end, and my day ended with a bump. Tripping over my own dress, breaking its strap and landing on the floor has only served to cause a certain amount of laughter in my household and a fair bit of pain (on top of the flare in symptoms for being so active online for the day) At least no one can say I didn’t suffer for my fundraising event!!

Share this:

A Day In My Life…May 12th 2015

As I’ve done for M.E. Awareness Day the past two years, today I’m going to share what it’s like to be me for the day.

Up until a few weeks ago this would have been a much more positive, less symptomatic account but unfortunately after receiving the news that my Nan had passed away my health took a nosedive so this account isn’t what I was expecting to be writing:

I wake feeling unrefreshed, after about 9 hours sleep. My body feels heavy and almost everywhere hurts. I slowly sit up and wait a few moments before attempting to get out of bed; too fast and I feel faint. I gather together the things I expect I’ll need downstairs for the day: clothes, my phone, a book, a blanket and often a cuddly toy friend into a bag and make my way downstairs leaning heavily on the hand rail for support.

I get my own breakfast, standing leaning on the worktop for support, then I get washed and dressed with the aid of a helping hand or parent to dress my lower half. After that I get on with a few hours study, currently this is done from the sofa when possible. I take regular breaks within this period as my concentration doesn’t last for that entire time.

I get lunch in the same way as I got breakfast, before taking an hour or so rest, normally watching the Australian soaps on TV. I often spend the rest of the afternoon doing something which takes little energy but is productive; this could be putting photos in a scrapbook, planting seeds, blogging or knitting, it all depends on how I feel.

Evenings are my worst time, my parents will cook me dinner which is eaten on the sofa, I’ll get into my pyjamas often requiring the help of one of my parents to change my bottom half. I’ll lay on the sofa reading a book, listening to music or play a game of cards with one of my parents.

Come ten o’clock it’s time to head back up the stairs to bed. This is often a struggle, my legs are incredibly heavy and painful so lifting my feet onto each step is incredibly difficult. For this reason one of my parents has to help me up the stairs. I get into bed, write in my journal before trying to get comfortable and letting sleep claim me.

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I can handle with no negative effects on my health. Anything more and I pay the next day.

As always it’s taking some time to get used to needing so much help again. It’s been a while since I’ve needed help getting showered and dressed and I am forever grateful to my parents for helping me out at times like this. I’m hoping things will pick up in the coming weeks and months, but for now I just need to cope with how things are and balance my activity levels in order to get myself improving again.

Some things haven’t changed since last time though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

Remember I’m spending today dressed as a Princess to raise money for Invest in ME a small charity funding vital biomedical research into M.E. If you can afford to sponsor me you can donate via text by texting PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or £10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare If you cannot afford to donate please share my story and help spread awareness. Every donation and share will make a difference. Thank You!

Share this:

10 Years

A lot can change in 10 years. 10 years ago today I was preparing for a hospital appointment the next day. Little did I know that hospital appointment would mark the beginning of so many things; being believed by a doctor, being diagnosed with a life limiting illness, being disbelieved by people, being sofa bound, being housebound, being cared for and so much more.

I’ve spent a decade with M.E. now and slowly but surely things are changing. Word is getting out that it’s not just ‘all in the head’, that it is a physical illness. The support networks available now are truly amazing.

10 years ago we had only just got broadband, there was only one computer in the house for the whole family to use. I was too ill to go out, I couldn’t go to school so slowly friendships dropped away – lets face it at 12 if you weren’t at school for a few months you could be easily forgotten – I ended up isolated. It felt like I was the only person in the world going through what I was dealing with. But gradually the internet grew, I got my own PC I discovered charities for people with M.E., people going through the same thing. Nowadays the internet is my lifeline. I have a personal computer, smartphone and tablet. I’ve found communities of people suffering from the same illness, the same symptoms, people who I can talk to about living with a chronic illness. The support they offer is truly invaluable. Without them I would once again feel isolated. I can honestly say the internet has changed my life for the better.

The past 10 years have seen their highs and lows, there’s been improvements, relapses, little blips but I’ve come through stronger than ever. I’ll admit this time 10 years ago I really couldn’t see myself getting better, I couldn’t see a way through the pain, exhaustion and other symptoms I was experiencing especially when no one would believe I was ill. But slowly and surely, by taking one day at a time I’ve made it through. I’ve seen some highs – walking into the town centre, doing some shopping and walking back unaided in 2010 – and I’ve seen some lows – a massive relapse in 2013 sending me to the worst I’d suffered with M.E – but I’ve kept going.

I honestly don’t know how. Looking back at just the last 5 years I can’t fathom how much has changed and what I’ve achieved. Two courses at the local adult education centre, starting my degree, going from walking unaided to being sofa bound again, keeping going with my degree, improving from sofa bound to walking with crutches, getting two thirds of my way to a degree. I’m sure there’s a helluva lot more I could mention, but these are the things that stick out for me in those five years. Pure determination not to give up, plus some brilliant support from friends, family and the online community has got me through.

10 years ago I’d never heard of M.E. or CFS I got thrown in at the deep end and had to learn about it through having it, and my family had to learn about it through seeing me suffer and helping me. But things are changing, slowly articles are appearing in the media accurately describing what it’s like to have M.E., the symptoms and effects it has on peoples’ lives. Sadly there are still many inaccurate articles published but the tide is turning; people are beginning to have a rough idea of what M.E. is, no matter how sketchy that idea is it’s a start.

I don’t expect things to change overnight, heck if there’s one thing I’ve learned in the past 10 years it’s that you have to be patient to see improvements and changes, attitudes towards M.E. are slowly changing, research is being conducted and days like today are playing a big part; Today is M.E. Awareness Day. A day when people with M.E. spread their stories through social media, local media and any other way they possibly can. It takes a lot of courage and precious energy to do so but we do it because we need things to change. We don’t want any future sufferers to have to go through what we have been through and are going through. We want the diagnosis to be there for them, the support to be there for them and ultimately if not the cure than the treatment to be there for them. This is the day we spread awareness of our fight for that.

With this in mind I’d like to remind you that I’m spending today dressed as a Princess in order to raise money for Invest in ME who are a small charity doing a fantastic job at raising awareness and funding much needed research into M.E. If you can spare even a pound to sponsor me I would greatly appreciate it. You can do so by texting PCJW78 followed by your donation amount £1, £2, £3, £4, £5, or £10 to 70070 or by donating online at http://www.justgiving.com/PrincessClare I shall of course post all the photos on this blog in the coming days but in the meantime head over to the Facebook page or @ALifeWithinME on Twitter!

Share this:

Fundraising on May 12th

As I’ve mentioned in a previous post I’m going to be fundraising for Invest in ME on May 12th by dressing as a Princess for the day! To say I’m excited about this is an understatement; finding a way to fundraise when you have so little energy is rather difficult, so this is a big thing.

I’ve been overwhelmed by the support and donations I have received so far on my JustGiving page: I reached £50, half my initial target, in under a week! If you’ve been following my progress on the JustGiving page, Facebook or Twitter you’ll know I shared a photo of my homemade, hand knitted tiara when I reached that halfway point.

My hand knitted tiara, complete with blue sequin jewels

I also received a wonderful fundraising pack from the charity I am supporting; Invest in ME. I will proudly be wearing the sash as part of my Princess costume!

My Fundraising pack from Invest in ME

The reason I am fundraising for an M.E charity is because we need research into the cause if we are to ever find an effective treatment and hopefully a cure! I also want to raise as much awareness about M.E. as possible, since it is still a misunderstood illness and the attitudes towards people who suffer from it can be very hurtful. Raising awareness and educating everyone about M.E. can only improve this!

I’ve promised that if I reach my £100 target before May 12th I’ll give you all a sneak peek of my Princess dress! So if you want that sneak preview, and to help me smash my £100 target please text PCJW78 followed by the amount you want to donate (£1, £2, £3, £4, £5 or£10) to 70070 (e.g. PCJW78 £4 to 70070) or head over to my JustGiving page: http://www.justgiving.com/PrincessClare

Share this:

Page 2 of 3

Powered by WordPress & Theme by Anders Norén