Tag Archives: charity

307/365 – Thinking of Carole

Today is the funeral of my honourary auntie Carole and the family very kindly decided to give any money donated to Myaware. As I sadly couldn’t make it up for varied reasons, my mum asked me if I wanted to contribute anything to the speech that she was asked to give. The words flowed as I thought back to many happy memories we shared. Here’s what I wrote for this wonderful woman: 

Carole, an honorary auntie to me, who always had warm hugs to share, a filthy laugh to brighten up my day and a joke to tell. Our family gatherings will not be the same without you Carole.

When I heard the news, the first memories that flooded back to me were of happy times we shared in Cyprus. Of her sneaking me cigarettes when my mum wasn’t watching, the hilarious stories she’d share over evening drinks, her being kind enough to let me stay in her flat, and, just like me, her passion for shopping. 

The latter was shown most clearly to me when we all took a trip to Northern Cyprus. We were cooped up in a car for what felt like forever for a teenager. By the time we arrived in Famagusta, I wasn’t interested in seeing any of the sights – I just wanted to get to the shops. Thankfully I was in good company with Carole – the fastest I’ve ever seen her move was when the market came into view. Carole was a champion haggler and this was my first full experience of her talents in action. I’m not sure what she came away with, but she treated me to a beautiful bag at half the price the traders bought it for. I was in complete awe at her skills and whenever I try to barter now that day comes to mind.
On another Cyprus evening, I had flown my then girlfriend in and Carole kept looking at us and smiling. I hadn’t told her at this point that I was gay and that this girl was more than a friend, but later that evening she brought it up in the most natural way and gave me the warmest hug. That was Carole – she was always warm, she was always generous and she loved seeing the people that she cared about happy.

When I had an operation last year for myasthenia gravis, she not only texted me every day to check how I was getting on but also my mum to see how she was doing’

I continued by saying I wanted to thank the family for donating the collection money today to Myaware and how much it means to me.

Carole, you will be in my heart today and always.

105/365 -Raising funds for myasthenia 

Whether you’re a fan, are sceptical or loathe it, fundraising plays a vital role in keeping charities that support people with myasthenia going. It costs Myaware £3,000 a day to provide its services in research, support and awareness. That’s £21,000 a week, £84,000 a month and more than £1m a year. If you’ve ever been supported by a charity like Myaware you have done so because an organisation has donated money, one of the staff have fought hard for a grant or someone has worked hard to raise funds.

It was this reflection that made me decide to do some fundraising for the charity last year. I thought about the way the lovely Maria had provided help and support for me when I first was diagnosed – without her I probably would still be in the process of getting a consultant. The way she’d invited me along to meetings and spoke to when I nervously arrived. I had wanted to do a triathlon but on the aziathioprine was advised not to swim in open water. So I decided to do a staggered triathlon – a 120km walk, a 13 mile run and a 60m cycle. In the end I raised about £1,100 thanks to the effort and generous support of friends and family. It felt like a lot of work but I was delighted to be able to contribute those funds to a charity that had supported me.

I’ve decided to take a break from fundraising this year as I raised funds for Aberlour in the Kilt Walk the previous year and don’t want to put financial pressure on my loved ones. However if you’re thinking about taking part in a sporting event or are looking for a challenge, physical or otherwise, there are lots of ways you can raise funds for Myaware available here.

My mum is going to do some ‘can shaking’ for Myaware in the next few weeks with the Midlothian branch – that’s something you could do with one of the local branches or, if you organise it with the charity via info@myaware.org, with a club or social group.

If non of these take your fancy you could do what I did and create your own charity challenge or event. You could do something fun and relatively easy like doing Up at the 02 arena (just don’t do what I did and try to do a ninja kick for a photo at the top – ended up having to slide down part of the way on my bum as I hurt my knee). The world is your oyster and every penny will be gratefully received. Not just that, I can guarantee it’ll make you feel great to contribute to an organisation that offers so much to people who don’t often have their condition acknowledged. 

49/365 – Getting involved in the myasthenia gravis community

Following on from my post about being defined by myasthenia gravis, I want to write today about getting involved in the MG community.

As I said yesterday, hiding from the fact that you have MG can be not only damaging to yourself but also it limits the progress of raising awareness in your social circle and beyond. In order to feel strong enough to speak about your condition, having support is key.

While people have a number of arrangements, a great place to get, and offer support in return, is the Myaware community. With regional get togethers across the UK and Ireland, a young persons group in London (with the potential plan of moving meetings around to other parts of the country), numerous events and an active online community, there are many opportunities to discuss your situation, feelings and raise any questions you have with fellow people with myasthenia. Not forgetting my international readers, there also seem to be charities across the globe that offer similar kinds of support.

Although charities have limited resources, if there isn’t a group in your area, and you feel there is a need for one, you could always get together some volunteers to run it.

The benefit of joining a support group
Joining the Myaware community was one of the first things I did when diagnosed in 2013. I needed to know how people coped, what their experiences were and that it wouldn’t always be this frightening.

I initially went along to a conference, where I met some lovely people who were full of information and warmth. I met a mum who’s daughter had MG and she was struggling to cope and I met a couple who mentioned their daughter also had MG and was involved in a young person’s group.

I then plucked up the courage to go along to said young person’s group. Not knowing what to expect, or knowing anyone, made it nerve wracking. At this point I imagined how difficult it would have been getting the diagnosis even a few years earlier when I didn’t have the confidence I do now.

Right away I was made to feel welcome and had some great chats about living with myasthenia but also, as it was coming up to Christmas, we were discussing lots of other things too. This fits in with what I was saying yesterday about not being defined by the condition – it is only part of who we are.

I’ve since been back to a few events and they have always been worth attending. The next young group, for people up to 45, is on Thursday 19 March and is a pizza making night in High Holborn, London. There are 20 places so if you are interested, email Sarah.hindley@myaware.org

If face-to-face doesn’t work for you
Whether it’s difficultly travelling to meetings, child care issues or shyness (along with many other possibilities), the group meetings don’t appeal to everyone. However, there is now a very active online community for people with myasthenia.

Today’s photo is how I’m often seen – checking the latest happenings in the myasthenia online community via my phone.

As I’ve mentioned before, the Myaware Facebook community group for people between 18 and 45 is a great tool for people to question, empathise, support and release. It is a very active and friendly page, with at least one or two posts most days from members. This means from the comfort of your own home, you can make friends and share experiences. It is a closed group, but if you are interested in joining use the email address above for Sarah.

Twitter and Instagram
There’s a growing international MG community on both of these social media channels and to find them all you have to do is search one of the following:

#myastheniagravis #myasthenia #mgwarrior #mg…

Again, these hashtags are used when people need support or to vent. Although these are not as active as the Facebook community yet, the presence is growing.

Another hashtag that lots of people with myasthenia use on these channels is ‘spoonie’, which I’ll explain tomorrow.

To sum up, whether you want face-to-face contact or prefer a virtual community, there are lots of options for you to get involved. I hope to see you in one of these communities soon.