Category Archives: Myaware

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.

3 years of myasthenia gravis

This month marks my 3 year anniversary of myasthenia gravis diagnosis. I realised this today with a bit of a shock and found myself asking how 3 years could feel so long and short at the same time?!

Where I was 3 years ago

September 2013 – I had had an incident in March where my right eye had gone squint over night. After lots of tests at Moorfield Eye Hospital, I was given the all clear and 2 weeks later the eye was back to normal. I let out a sigh of relief and put it out if my mind for fear that thinking about it might make my eye go squint again. But in September the double vision brought on by the squint eye crept back and as I sat at work not knowing which screen was the real one, I knew I had to get back to the hospital. Panic struck – once could be bad luck but twice was a pattern. 

I was told that I had suspected myasthenia gravis and a diagnosis had been sent to my old address in April. 6 months of knowing about the condition without treatment felt unfair and as the symptoms progressed over the coming months I got angry about it.

 As I’m sure many of you can relate to, hearing you have myasthenia gravis for the first time is upsetting and terrifying. What is it? What does it mean for me? Googling it didn’t make me feel any better – in fact I started to panic that life as I knew it was about to rapidly change. And it did.

Before I received my first appointment with my consultant and therefore received treatment, my vision was almost permanently double, I started to have difficulties with speech, I struggled swallowing and couldn’t really eat around people due to awkwardness of it all.

For a long time after September 2013,  I was in a difficult place both mentally and physically.

Between Sept 2013 and Sept 2016

I’ve had:

1 thymectomy- an operation to remove the thymus gland

2 specialist consultants 

3 jobs

4 different kinds of medication

The pleasure of attending 5 Myaware meetups

and…

I’ve written more than 365 blogs about living with the condition. 

September 2016

3 years on and I often forget I have MG. After seeing my new Edinburgh-based consultant, I’ve cut out 1 drug and, as I’m doing well, I should be gradually reducing another shortly.  I’m in drug induced remission according to the doctor and we’re testing whether that will hold as I take the drugs away…a bit like a game of Jenga.

Since my move back to Scotland, my quality of life is superb which in turn has helped my symptoms stabilise and reduce. My work-life balance is…balanced and the stress I feel in Edinburgh, compared to London, is minimal. I now get the occasional ptosis (eyelid droop) and I get exhausted still if I over exert/indulge myself, but that’s about it. Both of those things aren’t too hard to live with when I look back to the alternative experience 3 years ago.

On the over indulgence point, I’m currently taking a month off from alcohol mainly to rest my liver after a rather boozy summer. But I’m also keeping a close eye on how my energy levels are without alcohol in my life as I’m not averse to cutting it out for good.

I’ve felt strong enough recently to try a host of outdoors sports: kayaking, paddle boarding and Munro (Scottish mountains over 3,000ft) climbing (as pictured with my friend Steph). Each of these adventures were challenging but I managed without any MG-related difficulties. This is on top of 3 fitness sessions a week.

And most importantly, I’m writing almost every day. Whether anything will ever come of it or not, I’m really enjoying the discipline and the creative outlet that it gives me. Having the mental space and quiet to do that is something I couldn’t of dreamed of 3 years ago.

3 years is a long and short time 

While much has changed over the last 3 years I know that in another 3 years time, everything will likely be different again. I might have had a crisis (where your muscles stop working properly) but I might also have trekked to Everest base camp, I might have had to give up working full time or I might be running a team. That’s the problem with MG – it fluctuates so all I can do is try to keep myself strong, follow the doctors orders and, most importantly, listen to my body.

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 fear, the guilt and the irrational thoughts

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

This entry is about the period after diagnosis when the initial shock is starting to wear off and the fear, guilt and crazies start to creep in.

The Fear

The aggressive onset of Laurna’s initial symptoms made me fear for her and how much further her condition would deteriorate. Within a year, she had gone from having no symptoms to having regular tsosis, speech slurring, difficulty swallowing and weakened limbs. Google was a terrifying place with its doom and gloom articles and pictures. I have never been a particularly creative person but during that time, I dreamed up every scenario possible (and even those that were impossible and frankly ridiculous).

Selfishly, I feared that Laurna would want space after her diagnosis and maybe break up with me. As it turned out, Laurna did need space to figure things out but thankfully not in the way I was worried about. I had to learn to be patient and accept that I can’t ‘fix’ everything. Looking back, I have always really appreciated how patient Laurna was with me learning to be patient!

The Guilt

I am sure lots of partners can relate to this but put simply – ‘It Should Have Been Me’. I just felt guilty. I felt guilty for having fears. I felt guilty for feeling guilty. Laurna had Myasthenia and I couldn’t take it from her or even share some of the load. 

Laurna has always been so active and it seemed a particularly cruel thing for such an energetic person to get. It left me feeling very helpless for quite a while. Ultimately, this kind of thinking doesn’t help you and it doesn’t help your partner. I tried to focus on the things that I could do rather than what I couldn’t do and I found that helped a lot. 

The Irrational Thoughts

I know it’s different for everyone but my brain turned into a tumble drier of questions, thoughts, doubts, concerns, ideas and plans.

How did I feel about Laurna’s diagnosis? What did it mean for her? What did it mean for me? How much training would it take to be able to run every marathon ever organised and raise thousands of pounds for research? What impact would it have if we wanted to have children in the future? Was I going to give up my career to look after Laurna? On second thoughts, I could never give up my career because I may have to support the both of us? What if I retrained as a scientist and single handedly developed a cure – can’t be that hard, right? Am I really the right person to deal with this….

As you can see, I went from having a total crisis of confidence to being overly exuberant in wanting to defeat Myasthenia. There was also a lot of fear driven hypothesising and general concern for the future. I worried what people would think if I shared my doubts or concerns and so they remained largely unspoken. 

I now understand that it is important to engage with the unspoken and feel more comfortable allowing myself to feel whatever it is that I feel. Sometimes ‘unspoken’ thoughts are there to protect you – there can be a nugget of value in the middle of the madness.

Conclusion

I’m not really sure when the ‘fear, guilt and crazy’ stage ended. It all just phased out as we ‘got on with stuff’. The main thing I would take away is to be kind to yourself and to each other. It is a complex phase to navigate and requires patience, empathy and communication. It’s when your support team can really help too. 

The priority is the person with the Myasthenia who has much more to deal with than you in this moment. If you feel that this phase is getting in the way of your support or your relationship, there are lots of options available. Counselling is always a good place to start and the Myaware charity (amongst others) has great resources including a counsellor and support groups. Just remember you’re not alone.

Guest blog: Go team

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

Teamwork: Less Me and More We

I mentioned this already but Myasthenia really is a team effort. Luckily, Laurna has a great team to support her which is made up of her amazing family, friends, colleagues and of course, the MG community. When supporting someone with Myasthenia, it is important to also rally a team of your own

My team – who are they?

Anyone and everyone. For me, I have the greatest team to support me made up of people who don’t even realise they are on a team (surprise!)

I consider anybody who has ever asked “How’s Laurna?” or agreed to come for a distraction pint with me as a member of my team. I am even more grateful for the people who ask “How are you?” when enquiring about Laurna’s Myasthenia. All these people give me the opportunity to talk if I need to (I don’t want to talk about it…but…) or distract me when I can’t talk about it anymore.

At Myaware meetings, I’ve been  encouraged to hear stories from people who have recruited their children onto their team to help around the house, neighbours to give those children lifts to school or family to step in and provide some respite for partners who maybe just need a personal night to themselves. Every contribution is one less thing for you to do which can really make a difference. Despite how much you might try, you can’t be everywhere and do everything. And it’s ok not to want to be either.

Sounds great but what do I need to do?

Communicate. Like any good team, you can’t expect to win a Grandslam without an understanding of what is required and some practise (Ireland are just giving the other rugby 6 nation teams a sporting chance this year!).

 In the beginning, I felt guilty about talking too much, taking up too much time, awkward about asking for favours. Now, I am much better about telling those around me what I need and letting them get involved. Maybe I have just been lucky but my experience has been that people want to help and like to feel involved. 

I am generally quite a proud person but I had to realise that by letting people help me, I was indirectly helping Laurna. My friends are great and have been there to confide in but also to provide light relief in the form of ‘girls nights’ and weekends away. When working overseas, I have often asked them to discretely check in on Laurna to make sure she is ok. Laurna now pretends not to raise a suspicious eyebrow at their ‘out of the blue’ texts 

So don’t be afraid to ask for help and be thankful for the small gestures which make a difference. When it comes to your loved one’s Myasthenia, it’s important to look after you first so that you can look after them.

Guest blog: Elaine’s introduction 

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

Laurna is the writer but I’m going to try something out of my comfort zone over the next few blogs. You see personal/creative writing is not a strength of mine. My friends often joke about how formal my writing is – it often includes a bunch of ‘thereins and heretofores’. If you can bear with me I will try to lend a different perspective on living with Myasthenia because in any household, Myasthenia is a team effort.

When Laurna was first diagnosed, the prospect of ‘our household’ was still an unspoken future hope. Laurna and I had been together for about 6 months when she started experiencing symptoms. The insecurities that naturally come with a relatively new relationship seemed to be magnified as I simultaneously worried about being suffocatingly attentive or appearing aloof in an attempt to give some space. 

Another  year and six months on and Laurna was being wheeled into an operating theatre in her hospital nightgown to have a Thymectomy. I have never felt as useless as I did that day putting her care into the hands of complete strangers. 

In the days and weeks after the operation and despite initial stubborn objections, I was able to help out more and we found humour in most things from the ‘sexy’ hospital gowns to making up outrageous stories to impress people about how she got her scar (did I ever tell you about the time Laurna got into a bar fight with a shark?)

 Two years after the operation and we have settled into our usual Myasthenia related routine. I give Laurna a hard time about reducing her medication, over-exercising and not getting enough rest. She is mostly appreciative of my perspective and I usually know when to back off. It can be a hard balance to achieve and continuing to find that sweet spot can be a delicate task.

 I have also had to really improve the relationship with myself over that time to be strong physically and emotionally so that I can cope with all the things Myasthenia, with its almost comedic inconvenient timing, throws at you.

 Over the next few days, I will give some examples of the kinds of things that work for me. 

Retrospect gives 20/20 vision and these observations, while seemingly straightforward now, were not always so apparent. Of course, all experiences and relationship dynamics are different.

From attending the Myasthenia events, I have met the most amazing Mothers and Daughters, Friends, Husbands and Wives etc. Hopefully most people will find something to relate to over the next few days, regardless of the capacity in which you support someone with Myasthenia.

312/365 – Maria and Zenaida

Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.

Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own. 

‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.

It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor. 

I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.

Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.

They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis. 

While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.

So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:

  • muscle weakness
  • double vision
  • droopy eyelids
  • constant heavy limbs
  • squint eyes 
  • difficulty speaking
  • difficulty swallowing
  • their limbs give out 

 

 

311/365 -Funding research for myasthenia

So yesterday I covered the key points in the speech given by Myaware’s CEO Ruth Inglew. Today I wanted to look at the research she mentioned.

Nearly £1 million from the charity has been spent on funding research over the last nine years. While this doesn’t sound like a huge number, around £110,000 a year, it is being used to fund some interesting projects.

Read all of the blogs about the Myaware Young People’s conference 2015.

Some of the research that is being funded currently is:

  • A self assessment tool which gives you a medically accurate score to give your consultant and that you can track over time – I wrote about this research trial here when I thought I might be able to take part in it.
  • The University Hospital Southampton is looking at why it takes aziathioprine so long to work (6+ months) and if there are any early indicators to show it won’t work. 
  • Moorfields hospital in London are looking at ocular myasthenia gravis (OMG) and signs of people who are likely to develop generalised MG.
  • In Oxford, there is work being undertaken to look at existing medication to see if any could be remodelled for use on myasthenia gravis. This is what happened with salbutamol – a drug used for people with asthma which was repurposed for those with congenital myasthenia gravis. 

There is some interesting research in that list with a mix of trials for new arrivals to the myasthenia world (aziathioprine/OMG) and also for those who have been in the club for a while now (self assessment/drug remodelling).

Is there anything MG-related that you would like to see researched? 

310/365 – Myasthenia Gravis: the latest

As I mentioned in yesterday’s post about the Myaware Young People’s conference, CEO Ruth Inglew gave an update on the charity’s activities and aims over the next year. 

Some of the information I had heard before and some was new, but it was interesting to hear it all put together.  

 
An overview of myasthenia

Ruth started by reasserting that it is difficult to know exactly how many people in the UK with MG there are due to a lack of NHS and local authority data. The charity thinks there are:

  •  Between 10,000-12,000 people with a form of MG in the UK
  • 53% over 60
  • 47% under 60
  • A third have ocular myasthenia gravis
  • 600 have congenital myasthenia gravis
  • 300 have LEMS

The charity have a database of around half of the people in the UK who are affected by MG and have in the last year increased the number of new members by 721 people.

It’s incredible to think of how many people there are out there who haven’t reached out for support.

Data from the Neurological Alliance

The next section of the talk focused on data from the Neurological Alliance in 2014.

It said that:

  • 51% of people with MG saw a GP three or more times before they were referred to a neurologist
  • For 40% it took more than 6 months to be referred to a neurologist
  • More than 50% had difficulty receiving treatment or services

Even more shocking than the above is the amount of money being spent on non- elective hospital stays for myasthenia patients – a whopping £16.3 million a year in 2012/2013. 

NHS spend varies largely in the different regions. The charity has calculated that replicating the working methods of the cheapest region across the country, assuming patients in that area are receiving the best care meaning that they aren’t needing emergency hospital treatments, could save the NHS around £8 million a year. There are quite a few ifs and buts in the theory, however the regional differences do suggest there are savings to be made.
There is scheduled to be a National Institure for Health and Care Excellence (NICE) report into neurological problems from 2016, which Myaware is hoping to feed into.

Aims for the charity 

Some of the aims Ruth pointed out moving forward are:

  • Campaigning for medical exemption certificates as one third of people only find out about them through Myaware. I found out after a year and therefore was paying around £30 a month for those 12 months that I didn’t need to pay. 
  • To get accredited GP training to do with myasthenia gravis – whether that is via online training or a seminar
  • Building on this will be new information for medical professionals provided by Myaware – the charity is hoping to create postcards for members to give to medical professionals when being seen by them

More from this talk on research in my next blog.

309/365 – Myasthenia community coming together

Yesterday was this year Myaware’s Young Person’s conference in Birmingham. Kicking off at 11am, the schedule was quite busy until after 5pm.

Sadly I missed the morning activity as we got delayed coming through from London but from what I heard the presentation by Dr Fiona Norwood, of King’s College Hospital, was both interesting and made lots of the members want to transfer over to her. From the brief conversation I had with her over lunch I can well imagine how great she would be as a consultant. More about this in my next blog.

The afternoon schedule was good – with a mix of workshops, an update about the charity from Ruth (another blog on this will follow) and finally a session of Tai Chi and relaxation (as pictured below) which was definitely my highlight of the activities. Everyone who was there will long remember flying like majestic birds. 

 
For me though what made the day was the conversations with my fellow MGers from across England and Northern Ireland. There was a really positive atmosphere in the room and everyone seemed delighted to be in a place where they didn’t need to explain themselves. 

While there was a sense of support amongst the group and being there for anyone who was having a hard time, there was also lots of laugh. While some of the sessioms organised were quite serious, the company was relaxed and everyone seemed to be having fun when chatting with each other.

As I’ve said above, I have plenty more to say in the next few posts. For now though, thank you to everyone who made my trip through to Birmingham (on the slowest train on earth) worthwhile. I’ll definitely be staying over next year!