Category Archives: Work

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.

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

Myasthenia and moving home

I know I’ve promised to hand this blog over to the MG community and I’ve had some posts already so thanks for those. They will be posted shortly. But it seemed wrong to let such a big life event pass without writing about it and the impact it has had on my MG.

Moving house is stressful, dull and time consuming. It’s also exhausting and that spells trouble for people with conditions like myasthenia. 

I’ve written some tips below to help limit the fatigue followed by my own experience of moving on this occasion.

Tips for moving with MG

  1. Do it gradually – try a room if you’re having a good day or just a box on a bad day. Doing it all at once will leave you exhausted.
  2. Ask for help – friends, family or even neighbours are normally more than happy to lend a hand. 
  3. If you don’t have people to help, it might be worth thinking about whether you can afford a moving company to do the work.
  4. Take what you can in bags rather than boxes -especially if you can get help putting a bag on, it’s a lot less strenuous than lugging boxes.
  5. If you can, do the actual move over a few days – it’s physically exhausting and you’re better to get rest inbetween.
  6. Pack less in your bags/boxes – it’s easier to do a couple of additional runs with lighter loads.

Moving city 

This time everything felt hard – from the clear out, with Shelter charity shop receiving 15 bags of ‘goodies’ and our friends having iron boards and roasting tins forced upon them, to the actual move, where we carted Elaine’s stuff back to Dublin by car on the ferry (6 hour journey each way) and mine back to Edinburgh by car (6 hour drive). I’m not one to shy away from hard work – in fact I’ve always quite enjoyed the physicality of the actual move – but the effort of doing it all in just over a week has drained me. 

The things that made moving exhausting for me:

  • The first thing that surprised me was I felt exhausted from driving on motorways. I’ve always found driving relaxing, but having to hold my right foot over the pedal for a long period was difficult.
  • The 6am starts several days in a row left me exhausted 
  • Clearing the stuff we didn’t want and the flat in general – probably the biggest job of the move and seemed to never end

A week after heading back from Dublin, I’ve had to up my dose of steroids for the first time in 6 months. Why? Because even though I’ve been getting long sleeps and taking it pretty easy since, I have the heavy limbs, my eye is down again, for the first time since Christmas, and my swallowing has been impacted.

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.

336/365 – Last commute of 2015

Hurrah – my favourite day of the year since living in London has arrived. The last time I have to push and squash myself onto a busy bus, tube and then walk briskly to get into the office through the Victoria crowds. This year’s commute has been equally crap as last year’s and I’m definitely ready to give it a rest for nearly two weeks. 

Commuting in London is tough for everyone – the sadness can often linger hours after stepping out of the sardine can vehicle as can the frustration and the disillusionment. There are moments of shared joy where humanity makes the long journey down to London’s bowel, but they are usually reserved for afternoons and evenings. 

When you’ve had a tough commute, it can feel like you’ve used all your energy up before even arriving at work. On those mornings – where everything seems to go wrong – I long for the cycles to work I used to have in Aberdeen where I couldn’t feel my hands on arrival and my hair was always windswept and interesting.

Put together with MG, commuting in London can feel impossible when you’re having fatigue days. You feel like crying when someone nips ahead of you to get the last seat and you barely lift your arm up to hold on. Most days I get a seat after a few stops but sometimes it can be half an hour of standing which in the heat and the huddle is tiring. 

Today, transport is quiet as London evacuates for Christmas so I’ll get a seat. Nonetheless roll on 2 weeks of calm Edinburgh and Dublin transport.

330/365 – Last push until Christmas holidays

With three office days left until the Christmas holidays, I feel it’s a respectable time to allow myself to get excited. However I certainly won’t be winding down – it’s such a busy week, both in and out of work, I get tired thinking about it.

I’ve got most of my presents (bought not wrapped), I got a good chunk of my Christmas cards written last night and I feel of top of things in the office. But what I’m not on top of is blogs – with 34 following this one in 17 days it’s going to require 2-a-day for the next few weeks. 

Thankfully I’ve got lots I still want to write about including updates on #FacesofMyasthenia – keep sharing and posting people.

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. 

316/365 -Tough jobs for those with myasthenia

This weekend my brother visited from Manchester and on Saturday night we went to the theatre to see ‘In The Heights’. It was our third time seeing the Tony Award winning show set in Washington Heights, New York, together and once more we were amazed by the athleticism of the performers. 

The hip hop and salsa choreography in this high energy musical leaves you exhausted just watching it. In fact, I was so tired spectating on this occasion that it made me think about whether someone with myasthenia would be able to do a stage job like that. 

The main reason my mind wandered to this was one of the stars was heavily pregnant and it got me thinking about how rare that is to see. More specifically, how rare it is to see anyone who isn’t ‘at their best’. 

Physical jobs are obviously more difficult for people with MG and I’ve heard many tales of careers, current or dream, having to be put aside for something more realistic. Saying that, I’ve also met a PE teacher, a chef and I hear there is even a model with myasthenia. The question is – is any job still achievable if modifications can be made? If your dream has always been to become an actor/musician/model/athlete etc etc, does getting an MG diagnosis put an end to it? 

I would love to say no but unfortunately, like most things concerning MG, it is dependant on the individual and the severity of their condition. Due to the fluctuating nature of the condition, it may be that you are able to do a physical job part-time or most of the time with breaks when symptoms are flaring. I read about a model with Lyme Disease last week who works less than her other model companions, but who has still been able to forge a successful career. 

The heavily pregnant actress wasn’t doing flips like her colleagues, but she gave it her all. Her singing, her modified dancing and her acting were all equally fantastic and it was her performance that the crowd were talking about as they left the theatre. Could it not be the same for someone with myasthenia? 

293/365 – Stress and myasthenia

Today is national stress awareness day not that people with myasthenia need to be made aware of the dangers it brings. MGers learn fast that stress can be similar to intense exercise – when your muscles are tense it can increase muscle weakness. However unlike exercise that can be avoided, stress is not something we choose. It surrounds our daily lives and, unless you live in a meditation camp in the wilderness, the key to limiting the damage of stress is to focus on how to manage it. 

Odd that today, as I’m writing this I’m feeling zen. After 5 days in Edinburgh full of long lies, walks, good food, quality time with people I love and even a spa afternoon, stress feels like a distant memory. That’s because these things are all coping strategies for me as well as visiting my favourite pubs where I’m pictured above. 

Here are five things I do to manage stress:

1. Rest

When working the kind of hours I do, rest first and foremost is essential to reduce stress as it is a very tiring emotion. But I don’t find that it alone can take away the tightness I get when feeling stressed. 

2. Talking about why I’m stressed

I’m lucky to have people in my life who not only have the capacity but also the capability to talk about things I’m feeling stressed about. On most occasions, this makes the stress more manageable. Just talking helps me figure out possible solutions.

If I didn’t have people to talk to and struggling to cope, I would definitely reach out to call one of the stress helplines. Knowing the immense impact one conversation with a stranger can have from Childline, I wouldn’t hesitate in giving that option a try.

3. Talking about other things 

A technique I find useful at work if I’m feeling stressed is to go for a chat with a colleague. It can be a 2 minute conversation about anything but that little perspective break helps me focus better and also helps build relationships around the office.

4. Taking breaks – active if possible

I used to be the kind of person who would work right through lunch – those days are gone.  A proper lunch break is vital for me keeping my stress levels balanced and I try whenever possible to make it an active break whether that’s going for a walk outside, heading to a gym or to a class. No matter how stressed I am beforehand, I always go back with a clearer mind.

5. Writing down feelings and options

I’ve always been someone who thinks clearest when writing thoughts and feelings out. This trick definitely works with situations that make me feel stressed. I write everything down and then try to think about a range of possible things that could help. This way I take a more thorough look at the reasons why I’m feeling that way and a more active role in trying to tackle it. 

290/365 – Home for a break

July was the last time I had a break of more than one day so I’ve decided to head home for a rest.
There has been a lot of hard work and hard play since our holiday to the Scottish isles and I’m feeling a bit burned out.

Physically I feel great and my MG symptoms are pretty stable, but my brain needs a bit of a rest and my motivation needs a boost. It’s got to the stage this week that I’ve had toast twice and porridge once for dinner and that really isn’t my style.So my plan for the next few days is not to have one. Other than my cousin’s wedding reception on Saturday night, I have absolutely nothing booked in and the thought of that fills me with sheer delight. I may even do a little dance.
It’s likely my time off will include a bit of catching up with family and friends, a bit of exercise and a bit of going for a walk around my favourite city and seeing where I end up. Or it may just be staying in bed, watching crap on Netflix and binging on my mum’s homemade soup. The beauty is in the not knowing.