Tag Archives: Myaware

124/365 – Saying ‘I can’t’ because of myasthenia

Yesterday I took a notion that I want to run the London marathon next year for Myaware. The marathon length run is a challenge I’ve longed to take part in ever since I completed my first half four years ago. 

Three years ago I found walking the same distance agony due to my ruptured cruciate ligament, yet when I was walking that distance all I could think was how much easier running it would be. The eight hours down to four – the pain potentially worse but the recognition greater. 

However, when I was speaking it through with Elaine, the matter of whether I could complete it came up. Whether I would be putting myself in a lot of risk. Last year when I raced the last section of the Hackney half marathon, I got such severe cramp in one legs that I couldn’t move it – what would my body be like for double the distance? 

With the combination of my knee and my MG, if I say ‘I can’t run a marathon’ am I telling the truth? Is that fear talking or my, often absent, sensible voice? I was encouraged growing up to never say ‘I can’t’, and now this idea is prominent culturally with the #thisgirlcan etc campaigns. But in this case, my body may not be able to physically take the strain of a marathon.

I think the only way to know is to try a longer run over several hours – stopping if and when I need to. Rather than signing up, and committing to raising funds for Myaware, I should see whether I am able to go close to the distance. I want to believe that with enough training it’s achievable, but I won’t let my stubbornness put me at risk. Perhaps I’ll need to create my own challenge again. 

122/365 – Rural life vs city life with myasthenia gravis

Last week I became a tad obsessed with a TV show – Outlander. Having read the Diana Gabaldon book that inspired the show at least five years ago now, the story of an English woman who gets transported back in time from 1945 to the Jacobite period through a stone circle, has never left me. When I saw the TV adaption, while flicking through my Amazon Instant Video last weekend, I squealed with excitement and binge watched series one over a few days. 

The series made me homesick for Scotland and also made me consider how life would be in rural Scotland. I’ve often thought about returning from London to Edinburgh later in life, but had never considered what it would be like to live in a remote part of the country. 

I imagine there are pluses and minuses to both. Here are some thoughts my homesickness has stirred up in me this week.

For

  • Easier pace of life – living in a remote location means accepting a slower pace of life. It would be difficult to adjust to at first, however I imagine I would get used to it quickly. I have no doubt this slower pace would be beneficial for my myasthenia.
  • Exercise in nature not pollution – whether cycling, surfing, kayaking, walking or running, I imagine doing these sports in raw natural surroundings will be less damaging to my lungs and body. Also what’s more inspiring than mountains and glens, lochs and waves, for the sports above?!
  • Working from home – I imagine if I decided to live in a remote Scottish location I would need to work from home at least part of the time. My experience of this at the moment is positive. Working from home gives me freedom on days when I’m feeling fatigued/don’t have the energy for the commute. While I would get lonely doing it all the time, at least part time wfh is definitely a positive perk for people with MG.
  • Fresh food – Living in rural Scotland, with it’s ample farm shops, would make securing local fresh ingredients a lot easier. With all the discussions about chemicals in supermarket products, being able up shop little and often from local suppliers would be a delight. 
  • Knowing your doctor – I have this  naive notion that living in a rural community, you’d have a better relationship with your GP. Having a doctor who knows you well, and is hopefully invested in your wellbeing, would make life easier for someone with myasthenia. A lot of the time, patients know more about myasthenia than busy doctors do and it’s difficult to break this down when you see a different one each time.

Against

  • Specialist treatment – living in the country would mean a long journey each time you needed specialist treatment. While well this wouldn’t be so much of an issue, but if your symptoms were flaring up, and more regular treatment was required, this could be difficult and expensive for you and your family. 
  • Travelling for work– If securing a job where you can work from home is impossible, jobs may be limited unless you are willing to travel. Travel times may be long if you decide to stay somewhere remote and may not always be possible. This could mean staying over night elsewhere several times a week, which would undo some of the positives of country life. 
  • Friends – it may be harder to make friends in the countryside where there is a risk of meeting more closed-minded individuals. Also living in the country would put me at a distance from my friends in Scotland’s cities.
  • Support groups – the Myaware support groups tend to be based in the big cities so I would either have to travel to attend or would no longer be part of the myasthenia community. This would be a challenge as I find being part of the community important and useful. At least there is a strong online community now with the Facebook group.
  • Risk of becoming an alcoholic– this mildly offensive comment is a genuine concern. With less to keep me occupied, I imagine my penchant for whisky and wine would grow. Still the stress of city life also doesn’t help this so perhaps it’s about finding a healthy balance no matter where I am.

While it’s not something I am considering right now, it’s clear from this list that it would take a lot of careful planning, and a bit of help from fate, to make a move to rural Scotlabd work for me. For the moment I’ll try to remember the negatives while falling in love with Outlander’s stunning scenery.


113/365 – #IhaveheardofMG

Fantastic news – a hashtag raisong awareness about myasthenia is reaching thousands of people across social media. #ihaveheardofMG has had more than 620 tweets and nearly 145 posts on Instagram. Due to the amount of shares and people who have stumbled across it, it has, according to the below tweet, reached more than 58,000 people. That’s incredible work.   

According to a member of a Myaware group I am part of, it was one woman in Florida who came up with this idea. Putting my hands together for this woman with the upmost respect. Having tried to get people involved in doing a #100daysofmyasthenia, and so far having no luck, I know how difficult it is to get people engaged. Well done and let’s keep it going. 

Why does it matter?

The more people that are aware of MG, the better the chances are of quicker diagnosis. It may also be easier for corporate fundraising if the condition gets known by more people – the name sticking in their mind when it is time to choose a charity to support. Most of all it will help those with MG feel understood if more people know their condition.

If you have a social media account and have read about MG through this blog, please send a picture of yourself with a message including #IhaveheardofMG. It will be greatly appreciated by me, all the other people with MG in the world and the future generations who may get a quicker diagnosis because of you. 

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. 

78/365 – How to ask a person about their condition

You would think having had myasthenia gravis for a year and a half  I would know the best way to ask someone about their condition. I don’t. This is mainly because I’m not sure there is a good way to ask.

First of all, if being asked about my condition has taught me anything it’s to figure out why I want to know before opening my mouth. If it’s simply out of curiosity or intrigue, I’ve made the decision not to ask.

People are naturally inquisitive and, as a trained journalist, I often find a probing question slips out before I’ve thought twice. But the impact of that question about the thing that appears different can be significant – it can change someone’s day. To have that kind of effect if a question is asked vacantly is a bit crap. 

So if I’m not asking out of curiosity, why am I asking? To offer support? Sometimes yes. The counselling I do for Childline has taught me the difference between empathy and sympathy so I believe I can be an empathetic ear if people seem like they want to talk about it. 

Sometimes it may be a desire to connect. Is that selfish too? Yes and no – as I mentioned here there is a lot to be said for being involved in a community if you have an illness like MG that not many people understand. Connecting with someone who can relate to some of your daily struggles feels good.

When I think about the difference in how I respond now compared to a year and a half ago when someone asks me about my MG it’s simply that I speak about it if I feel like it. The people I don’t mind speaking to about it have asked as part of a natural conversation – like when I’ve discussed my diet or medication. It comes up naturally often if people want it to so my advice would be not to ask out of the blue. 

75/365 – Beginning of the myasthenia journey

As I mentioned in my eight ways myasthenia gravis has shaped me for the better post, being part of the MG community has helped me cope in many ways. On Thursday night, I went along to a Myaware Young Generation pizza making evening and it was great to get a chance to meet some new faces (as well as toss pizza dough in the air and eat far too many dough balls). 

The events I had been at up until Thursday had been dominated by women – perhaps because the condition tends to affect females at a younger age. However, I met two lovely men with myasthenia on Thursday evening. Both have had MG for a long time and were open about the trials and tribulations they have faced as we sent flour flying and slathered our pizzas in numerous toppings. 

I thoroughly enjoyed spending time chatting with them and think both should consider themselves role models, not just for men with MG but in general. I say this because they seemed very comfortable talking openly – an issue British men are notorious for particularly around health issues. As they have far more experience with the condition than I do, they were both supportive and empathetic when I was talking about my recent concerns. They provided advice and discussed gently things I should prepare for. It is this kind of peer support that is invaluable and they silenced any doubts I had about attending the event.

Speaking to them made me realise that, although a year and a half feels like a long time, I’m only in the very early stages of my myasthenia journey. With this in mind, I must continue to develop my Buddhist-like lack of attachment to the good times in preparation for the inevitable fluctuations of the future.

It also made me realise that developing lasting connections in the Myaware community is important as there will be times when others with MG will be best placed to offer support and advice. 

  

61/365 – It’s a small world 

So you know how I said nine times out of ten when you tell someone you have myasthenia gravis, they look at you with a blank face? Well I had the rare one out of ten meeting yesterday. 

While having a conversation with a colleague in the office kitchen, it came out that I have MG after I explained my dairy free diet. Expecting the normal blank look or the general questions about how it affects me, I was intrigued when she stepped back and looked shocked. It turned out that she is not only a trustee for Myaware but also set up the children’s branch of the charity as her son has congenital myasthenia. Very small world considering we only work a few desks apart. 

Although I had spoken to a couple of parents the first time I went to a Myaware conference, in our brief conversation I learned a great deal. It was fascinating to hear about some of the challenges young people and parents affected by CMG/MG face. 

She told me about the ‘Little Britain’ effect of having a child with CMG. Due to the fluctuation of the condition, sometimes a child can be in a wheelchair due to their muscle weakness and yet will be able to jump out of it if they see something they are interested in. Obviously people stare,  and the term ‘miracle’ has been used jokingly, but unlike the TV show’s character Andy, the children are not taking advantage of having a disability.  Yet parents are often treated like they are and are made to feel guilty about a whole range of different things before a diagnosis is secured. 

This is partly due to parents taking their child to the doctor with symptoms but, by the time they reach the surgery, everything appears normal again. It’s also to do with the blame the parents culture we have in this country  – if people with MG are allowed to feel the following, parents of children with MG/CMG should be allowed to.



I had previously discussed with Myaware about becoming a trustee and, after the brief conversation with my workmate, I’m even more keen to get involved. We plan to have a more indepth chat over a coffee next week and I hope I will be able to reveal then some ideas I’ve had about helping out with the children’s and young people’s branch. As I didn’t feel comfortable asking my colleague for a snap together, today’s picture is unrelated to this post other than it reflects my positive mood at meeting someone who understands at work.

19/365 – Goodbye press deadlines

Today I spent the morning in my new workplace meeting my manager, some
of my workmates and a couple of my team. I’m keeping news about my new role quiet until I start, but the morning was enough to know that I’m going to be very satisfied (and busy) in the role.

After working part-time since September, and finishing that up the first week of January, the last few months have been the first break I’ve had from working full time since I left university six and a half years ago.

I was concerned that with it being winter’s bleakest month, my funds being limited and due to the indefinite start date of my next role, the break might not be the best for my state of mind. However, I’ve used it in many useful ways which have put me in a fantastic place for starting my new role. One of the things I’ve been up to is volunteering some time with Myaware Continue reading 19/365 – Goodbye press deadlines