Talking about myasthenia on the radio

This week I’ve had two firsts happen to me – both of which were pretty exciting.

1. on Tuesday evening I spoke to E Care Radio in America about living with myasthenia gravis
2. on Wednesday, something I wrote was shortlisted for a short story competition

While the radio interview is the most relevant for this blog, the short story news is also related. I say that because it was writing this blog every day for a year that gave me the discipline to keep writing. Over the last two years I’ve been focusing more on creative writing and I’ve felt myself getting better (very slowly). Being shortlisted is a huge deal for me as it’s given me the confidence to keep bashing those words out.

Sadly the story isn’t about myasthenia… but you never know about the future.

Radio interview

I was approached about doing a radio show around a month ago by American digital station E Care Radio. As June is Myasthenia Awareness month, they wanted someone to speak about what it’s like to live with the condition and I didn’t feel like I could refuse as I’ve always said I’ll take any opportunity to raise awareness about MG. But once I agreed, I didn’t really think about it again until Tuesday morning…when I started to panic and doubt myself.

Who was I to speak about it? What did I know after a mere five years? Worse…would I be able to talk about the small amount that I do know when the nerves kicked in?

It was the fear of going totally blank that made me write down as much as I could think to say…none of which I looked at during the interview. Still, I think it helped calm me down and focus on what I did have to say. Which was quite a lot as it turns out…the interviewer could hardly get a word in.

I spoke about:

• my tips for coping with MG
• the best things that my loved ones have done to support
• balancing work with MG

You can have a listen to the interview on the E Care Radio website.

Guest post: summing up

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

Guest post: the unspoken contract

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

“Ideally couples should have three lives. One for him, one for her and one for them together”

I have always been a big believer that relationships are made up of three parts. You, your partner and the collective you. You support your partner with their Myasthenia but it is important that they support you in return. Without this equality, the triangle will collapse and it becomes more difficult to enjoy your identity as a couple. This entry is really about the most important team of all – you and your partner.

Over the last number of years, Laurna and I have, without knowing it, been defining and refining the ‘contract’ between us. This obviously isn’t a real or physical contract, more a collection of deals, boundaries or compromises agreed over time. Laurna probably has no idea that this ‘contract’ exists (sorry!) but it is a useful way for me to think about things. These are some of the ‘clauses’ that Laurna has unknowingly signed up to, to help me be a supporter 

Communicate (everytime)

It took a long time for me to trust that Laurna would tell me if she wasn’t ok. I had to become quite strong in asserting my need to know this. In considering whether to walk another stage of the Camino de Santiago last year, I made Laurna promise that she would be honest about how tired she was feeling throughout. Fundamentally, if something goes wrong, I am the one that needs to figure it out – not an easy task on the side of a mountain. This applies to all scenarios, from doing a grocery shop together to going out for a meal. If you’re telling your partner that you’re not feeling so good when you’re already getting a lift home from Tesco in an ambulance, the horse has already bolted.  

Laurna is generally really good at communicating but I know it’s not easy for everyone, particularly for men with Myasthenia who may be used to being ‘the strong one’. Allowing yourself to be vulnerable is difficult but we can’t help you if we don’t know about it.

Discuss decisions

People with Myasthenia have to make lots of decisions every day. Laurna will decide quite regularly whether to increase her medication if her ptosis is playing up. She might also be deciding whether to decrease her medication as part of her ongoing campaign to become ‘drug free’. These decisions are ultimately Laurna’s to make but they have an impact on me. In one instance, I was working overseas for a week. Laurna decided to step down her drugs while I was away. I came home days later to this frankly exhausted, depressed person. Besides from being obviously upset to see her like that, I also then had to cancel plans for the following days which I would never had made if I had known.

So little of the Myasthenia rollercoaster can be controlled. Where there is an element of choice, I think it is important to take advantage. This can apply to all sorts of things, for example, deciding on a ‘good’ time to take 6 weeks out for a Thymectomy, whether to try a new treatment or get involved in a trial. A bit of team planning can make these experiences easier and probably safer as there are more opportunities to put the right support in place.

Compromise

This is something Laurna and I work hard to achieve on an ongoing basis but the example I would like to share is not actually from our collection of stories. Instead, I came across a lovely young woman at a conference recently who was very upset because she and her partner were having problems due to their differing energy levels. On nights out with friends, she would be tired and want to go home early whereas he would be having a great time and want to stay. By all accounts, there were some fraught taxi journeys home. 

Another woman shared that her relationship was suffering because she wanted to spend their date nights watching DVDs on the couch whereas he wanted to go out together. He couldn’t understand why she couldn’t just ‘pull herself together’ and join him – surely she would feel better for a bit of air and some socialising?

Listening to this conversation was a sex psychotherapist (what a job) who specialises in couples where one or both have a health condition. She was able to share some examples of how her other clients have managed this type of scenario. Couples that were able to agree a plan in advance experienced less friction. They could agree that maybe once a month they would go out together but the other three weeks they would have nights in. When they did have to socialise, they could agree on a game plan for the evening before they left the house e.g. I’m feeling quite tired tonight so I will go for a couple of hours but you stay out/ I’m feeling quite tired tonight can we go for a couple of hours and both come home early. 

I thought these were really interesting samples of the kinds of ‘clauses’ that may appear in other couple’s contracts. Every couple is different but the one thing I think we all have in common is the need to protect the two individuals at the heart of a beautiful relationship

364/365 – What’s next for 365 days of myasthenia

And so, the end is near and so I face the final curtain (the longest farewell ever, right). Before I stop blogging in the way you’re familiar with, I want to remind you of what I’m hoping to do moving forward and how you can get involved.

After a year of writing about me and my experiences coping and battling with myasthenia gravis, I want to hand this blog over to you. I had originally thought we could do a week of other people blogging but that’s a lot of commitment. So instead I’ll be looking for guest posts. I’ll continue to post too – mainly when I have something interesting to share.

Calling all aspiring bloggers

Whether you have MG, are the loved one of someone with MG (be it father, daughter, partner, friend, employee…) or have only recently heard of MG, I’m looking for guest blogs about what the condition means to you and how you deal with it. 

The rules

• Subject: It can be a guest blog about one day/week/year of life with MG, the story of your/your loved ones’ diagnosis or about a specific part of your life: I’m very open to ideas although the one thing I’ll be reluctant to publish is a piece that just moans
• Word length: I’ll be looking forj blogs to be between 300-800 words
• Editing: I reserve the right to edit blogs down to a readable size and for grammar/spelling purposes. I’ll also edit blogs to make them more digestible if I receive a giant block of text 
• Pictures: please feel free to send photos over to insert into the blog being clear about where you think they would be best placed. As you know, a picture can be better than 1,000 words sometimes

Are you ready to blog?

If you’ve read the above and think you’re ready to submit/discuss a blog you’d like to write, just email me at laurnacr@hotmail.co.uk

361/365 – The lows of blogging for a year

After publishing a post about the highs of blogging for a year, here is the other side of the story.

As I’ve already said its been a fantastic year and I would recommend it – particularly to those who want to understand their condition better. But keep the following in mind:

• The time commitment

On good days, I could write a blog in under 30 minutes during my commute. But on other days it would eat into my lunch time and my evening. Not easy when you’re working hard so it’s important to have a clear purpose. This blog has taken me an hour and a half to write in bed on a Saturday morning – all the while, Elaine has been reading beside me. I’ve missed reading in 2015. 

Due to blogging, in 2015 I often had to lock myself away to finish a blog. My friends and Elaine joked on the Camino De Santiago that I was going to my blog studio whenever I went to the toilet.  It was often true – so that I wasn’t anti-socially writing on my phone I would slip off to write today’s post.

Saying this, at the end of the year I have a ‘finished product’ (almost) and a learning tool – so worth the sacrifice. This TED talk sums up much more eloquently than I could why the time spent capturing the ‘many tiny, beautiful, funny, tragic moments in your life’ is worthwhile.

• Fear of running out of things to say

This is an obvious one and something I had thought about a great deal before beginning. There were moments during the year when I felt like I had said all that could possibly be said about MG – it would stress me out a little. But it never lasted too long thanks to the active community and the condition having an impact on many areas of life.

I found it helpful to keep a list of ideas close to stop thoughts as butterflies flying off – now that I’m wrapping up there is still a list with left over ideas.

• Taking a step back and observing

Following on from my ‘blogging on the bog’, when writing regularly I’ve found I have to take a step back and try to observe. Similar to feelings experienced during my journalism days, this didn’t always leave me feeling comfortable, mainly when I could tell (or was told) that others weren’t pleased to be written about.

Thankfully the MG community, for the most part, has been really happy with the spotlight due to the potential to raise awareness.

• Being ‘the expert’

I’ve only had MG for a couple of years, I don’t have a medical background, I’m lucky that my health has been relatively good and I’m not always the most respectful of my body. I’m no expert or role model when it comes to what’s right in terms of MG treatment or lifestyle. I’m learning from one day to the next what works and what doesn’t for living with this rare condition. But by writing this blog, I worry that I’m meant to be ‘an expert’ and have often been asked questions which confirm this fear. I even added a disclaimer on the blog.

Thankfully most people who have engaged with the blog have seemed to understand that it’s about my journey and they should seek medical advice before replicating anything I have tried.

• Use of my images

One of the guys in the Myaware Young Generation private messaged me a while back about a website I had never heard of using one of my images. It is very misleading and it reads like I have written the page, which makes me feel really uncomfortable. I’ve now asked for Myaware’s support to get the image removed, as I’m wearing one of the charity’s t-shirts.

349/365 – Keeping it real this January

It’s the time of the year when you’ll be overwhelmed with cliches about new beginnings, and your year being a 365 day blank book (well 361 days at this stage) ready for you to fill etc etc. I may have put a few in my last blog. But let’s be honest – it doesn’t feel any different from last year. Not yet anyway.

To make it feel different, you have to be active about assessing what it is you want to change. That takes brain power and time for reflection and planning. The festive season is rich in many of the good things and one of those is time. But it’s in the first few weeks of January that the ground work is laid and the dreams of the year, and years, ahead takes shape or doesn’t. 

This week I’ve decided to be active about starting my resolutions. On the first day back to work, I got up early (5.30!!!) to go to hot yoga, ate well, bought lots of healthy food and cracked through some practical jobs that had been on my mind. During the rest of the week, I intend to start working on my other two resolutions including awareness for myasthenia.

342/365 – Role models with myasthenia in the public eye

How many times a day do you  discount yourself because of something that can’t be changed? During one of my conversations at Christmas, my cousin asked a question where I automatically ruled myself out due to myasthenia.

We were speaking about journalism and my cousin asked if I had ever or would ever try to do news presenting on TV. While there are many reasons that I haven’t in the past and won’t in the future, I automatically jumped to ‘I can’t because of my wonky eye’. I want to believe that it isn’t true – that anyone who wants to be a broadcast journalist, or any equivalent where they will be in the public eye, with the right training can. I’ve never done any broadcast journalism and have never been interested in doing any. But when you look at who is currently presenting news on TV there is a lack of diversity when it comes to disability. The lack of role models is a problem.

Without positive examples, I wonder how many other people believe that they would not be able to do a similar role? There is work needed to ensure that people with a disability are given more exposure in the public eye so that there are role models for the next generation. 

338/365 – What would make life better for those with myasthenia?

This is a question I’ve asked myself repeatedly during this year of blogging – what would improve quality of life for those with myasthenia (including myself)? Are there little things that would make life better or is it all medication-related?

Here are three things I think could help, but share your thoughts below:

1. Understanding employers, protection against discrimination in the workplace and flexible working – read more from my posts about work.

2. The name ‘myasthenia’ to be recognised more frequently -read more about from my posts on raising awareness.

3. If medical staff knew more about myasthenia or if there were more specialist nurses – most people you meet with MG will tell you they have had a mixed bag of luck with medical staff. While I know rare diseases like MG will never be given as much thought as other conditions, it would be fantastic if knowledge was better shared.

327/365 – #FacesofMyasthenia launched

As I’ve posted about twice now, a few weeks ago and advert for the talent in the tech sector got me thinking about running a #FacesofMyasthenia campaign. After the support of the MG community, we now have a video to launch:  
But to get this to reach as wide an audience as possible, and raise awareness, I need your help kind readers. 

Can you:

1. Use the hashtag #FacesofMyasthenia with each post

2. Can you share your own pic and a bit about your own MG as well as the video

3. Can you encourage friends and family to share it 

4. Can you put your location on the post and encourage anyone else to do the same

Let’s see how far we can get this. 

Here’s the link to the video or you can share the link to this post: https://flipagram.com/f/giUSqp9bCW

Thanks everyone for getting onboard with this – let’s show the world how beautiful the Faces of Myasthenia are.

324/365 – Talking about myasthenia at work

I’ve ‘outed’ my MG at work a few of times over the last couple of weeks. It’s made me realise that I’m not entirely comfortable talking about it yet. Similar to how I felt when telling people I like women when I was younger, I still wonder: will they think I’m not able to do my job properly, think less of me in general and worry about being more vulnerable to discrimination?

So what do I actually say when it comes up – 3 things normally:

• I describe the condition briefly by saying my rogue immune system attacks muscle-nerve junctions and stops the muscles working properly 
• I highlight my symptoms now – often by making a joke about my wonky eye 
• I mention what my symptoms were pre-medication

Some people ask questions after that and I’m delighted when they do as it means I’ve made them feel comfortable enough to do this.

As with anything ‘different’, the acceptance process takes time. I’m just not known for my patience. It’s been well over two years already, for goodness sake. I could have written nearly 1,000 blogs in that time. 

What I know, but haven’t quite accepted yet, is if people think I’m inferior because of MG then it’s not about me and it never will be. The only thing I can do to change it is continue to be open and challenge judgements by being committed to, and good at, my job.  If that doesn’t work, nothing else I can do will. 

Another thing I still need to get used to is  that being passionate about my job and ambitious does not mean that I have to do insane hours to prove myself. That’s a quick route to burn out. 

Let me be clear: this is projection on my part as no one has ever directly said these things. Sometimes I have heard able-ism implied, but never directly at me. So in that regard, it is about me and these insecurities that I need to get over.

Being open in a work blog post about it during Disability History Month meant that more people have heard of myasthenia. I don’t have the exact numbers just yet, but that’s more than enough reason to put my MG, and insecurities about it, out there.