Category Archives: Job satisfaction

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.

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? 

153/365 – Post Camino resolutions

As I discussed on day 140, Elaine and I spent time once we arrived in Santiago de Compostella last year writing separate lists of what we wanted to do differently on our return home. I found mine just before coming away and overall it made me feel positive about the last year. This year it took a little longer to process lessons learned as we were busy in the aftermath of the walk. Yesterday, on the beach in San Sebastián, I spent time thinking about what changes I want to make following this trip. 

Alongside quitting smoking for good, the two other ones that relate to myasthenia are:

1. Find healthy ways to cope with stress 

Stress is a trigger to increasing symptoms of myasthenia, and I realised how unhealthy my methods of coping with it have been recently. I have been resorting to drinking, binge eating unhealthy foods and occasionally smoking to cope. These are all further detrimental to my health and the myasthenia. Alcohol especially prevents good quality sleep, which is especially important for someone with MG. 

If anyone has useful techniques or any websites/book you would recommend on this subject, please feel free to share. The vast amounts of information available about stress make it hard to know where to start.

2. Better diet 

As mentioned above, my diet has been affected by stress of late and I’ve been eating an unhealthy amount of sugar, processed food and gluten/dairy. I’ve also not been making time to cook foods with the nutrients I need. While I don’t think I will return to a full dairy free diet, I plan to completely eradicate gluten, cut out the majority of dairy, significantly cut down on sugar and try to eat low fat protein. 

The others, joining the Spanish club at work, beginning weekly dance classes with Elaine and getting out of London more often for walks, are less relevant. They do however focus on quality of life and will only be possible with a better work-life balance. 

125/365 – Late night before election

Tomorrow, as the country goes to the polls, I’ll be able to let out a sigh of relief as my preparation work is over. Tonight I’ve been in the office late doing the last bits of pre-election work and using the last of the time before the ministers arrive to improve my team’s offer.

Not being able to get involved in the build up on social media during this general election has been strange, but I’ve found it interesting on the inside. Working for a department has definitely given me perspective on what uncertainty means for government. Saying that, I may be pining after my journalist days tomorrow evening when the results start rolling in – I’m not sure a 36 hour reporting shift (common during elections) would be best for the myasthenia. 

Will I be able to resist staying up late to track the results – only time will tell. Whatever happens, there’s sure to be lots more hard work once the latest administration is announced so I’ll be trying to get a good rest where I can.

72/365 – Taking the lead 

I’m not a natural leader. I get tongue-tied in the spotlight as I’m a much better written communicator. This hasn’t been helped by the myasthenia gravis as when my symptoms are flaring I feel extremely self conscious. I am still traumatised by the speech issues MG causes and, when speaking to a group, I tend to get so paranoid my words will start slurring that my delivery isn’t great. 

However, my personality is a big part driver, (read more about different personality types here), I’m hardworking and I’m ambitious. These attributes, along with being in the right place at the right time, have led me to manage a team and today I had to lead a discussion with the communications department on the future of digital. 

At previous times in my life, this spotlight would have filled me with dread, but today I enjoyed it. Although I know it shouldn’t matter, as mentioned in my post regarding vanity, it made a big difference that my symptoms were virtually non existent (I could pass for a normal). With around 15 pairs of eyes on me, I managed to mix up my words once or twice and couldn’t shake the fear of my voice going (particularly as I’m  reducing the steroids). Still, I think it was a useful discussion and hopefully it gave my colleagues some food for thought. 

While it may be another thing I can add to the list of things that are easier to do when my MG symptoms are reduced, I’m proud of myself. So today’s photo is me shining bright.

43/365 – Flexible working

Yesterday I took the opportunity to have my first day working from home. It’s part of the civil service flexible working pattern that employees are actively encouraged, if it works better for them, to work from home for one or two days a week. It’s the first time I’ve ever been encouraged to do this, although in my previous role the team were very flexible about working from home. This flexibility wasn’t a consideration when I applied for the role, but come yesterday I was definitely glad of it.

In my first two weeks in the new job, I arranged what felt like back-to-back meetings to ensure I have a good overview of how different sections of our department work together and to see how my team fits into this. These meetings have been really interesting so far and given me lots of potential projects. But after hardly getting a chance to sit at my desk, not to mention getting used to working five day weeks again and the aforementioned fatigue around it being my time of the month, I was thoroughly done in by end of play on Thursday. On top of that, I then had a three hour refresher course for the volunteer counselling I do for Childline.

By the time I got to bed, I was so grateful for the next day’s break from the commute and full day of meetings. It also meant I could get on with many of the tasks I hadn’t had time for during the week and play a bigger role in helping my team out with the day-to-day responsibilities.

While I know it doesn’t work for every kind of job, it’s a shame more office-based roles don’t allow for flexible working. I’ve heard recently of several people who have had to leave because their employers aren’t willing to be flexible and it just isn’t practical for them to work from an office, often far from where they live, for five days a week. I think whether it’s to do with having children, having a lengthy or extremely expensive commute or having a condition like myasthenia, the more employers that get behind flexible working the more motivated the workforce will be. What’s stopping it when all employees need is to be able to connect to a computer remotely or with urls? Here I’m pictured with all I need to work from home.

37/365 – To tick or not to tick disabled

So I had a fascinating Saturday morning…filling out a disability questionnaire to check I’m fit for work for the civil service.

On one of the forms after being selected for the role, I ticked yes when asked if I have a disability. I wasn’t sure if I had to tick this or not, due to my myasthenia gravis, so I thought I better just in case. I think I may have been mistaken and plan to speak to Human Resources next week.

Still, ticking yes on a disability form and filling out the questionnaire gave me a strange feeling. One of being different from everyone else although I don’t feel that way generally as I go about my working day.

I don’t feel that the way MG affects me impacts my work because, even when my vision has been double in the past, I’ve always found ways to work around it.

The first time my vision went double I worked through it with a prism in my glasses. As discussed in 33/365, I then lost my glasses and bought gauze patches to tape over one eye at work. I alternated this each day to ensure I wasn’t making one eye do all the work. This has been my approach ever since – it stops one of my eyes being strained from having to stay shut. It isn’t a particularly flattering look and I felt constantly aware of its presence at first, like the way people do when they start wearing glasses. But each of the few times when I have had double vision, I’ve found it easier to silence the vain voice in my head.

My friend Keith very kindly got me a glamorous diamanté eye patch for my birthday last year as a joke, and I love it. I haven’t had the opportunity to wear it yet but when I do, I’ll be giving Gabrielle a run for her money in the glamour stakes.

Anyway, I hope with my new glasses, which I plan to buy next month, I will be able to get a pop in prism to correct my vision as much as possible.

Saying all of this, I don’t consider myself to be unfit for work even when my vision is at its worst. I know I am lucky that I can still work in a job I love. My voice is back under control, although that has never been an issue at work, and I’ve never really felt the fatigue element of the condition. Thankfully the civil service does have flexible time and work from home days so if I wasn’t feeling at my best I would work in my house.

As you can see from today’s photo, I’ve been out walking again – this time up to Alexandra Palace. I’m fit enough to exercise at least 3 times a week, walk 10,000 steps a day, cook my own food, and clean my own flat, so the idea that I wouldn’t be fit to work seems bizarre right now. As I say, I know I’m lucky and I intend to never take that wellness for granted.

29/365 – Last post about work for a while

As a follow on from yesterday’s ‘false start’, today was my first in the DCLG building. Tonight I’m exhausted but that will not stop me from writing this. I feel like I did on my first Friday after starting my post-uni, full-time, job…when I fell asleep on a pub table with a big smile on my face.

Part of the fatigue comes from throwing myself into the new role by trying to tick as much off the to-do list as possible. Having had a few weeks to plan what I’d like to achieve in the role, I felt a sense of urgency to make a start on as many fronts as possible. With this in mind, I’ve also slept terribly the last couple of nights and would have injected caffeine into my eyeballs, if I could have, come 3pm.

Other than being shattered, my first day in the office was really enjoyable. I got to see the work my team does on a day-to-day basis, arranged a million and one coffees to meet key people across the department and beyond, and I started thinking about ways to develop what the content team does. I was given a warm welcome by the director and didn’t get lost once (quite a feat in such a sprawling building).

Here I am in professional mode in yet another toilet shot.

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On a personal level, I also checked out what the building’s beauty salon has to offer and booked myself an appointment to sign up to the fitness centre early next week. Best of all, as a Scot, I was programmed from birth to appreciate a bargain and the canteen’s lunch did not disappoint. My £2 lunch included a large bowl of tasty Broccoli soup and a potent coffee (pictured below) that stopped me from yawning my way through the afternoon. Just a tad more affordable than Canary Wharf’s cafés.

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Once the working day was done, some of the wider team met for Friday evening drinks in the local pub and I felt it would have been rude not to accept the invitation.
But after a well deserved glass of Shiraz Viognier, or two, I could feel my eyes starting to droop and my body protesting that it was time to go home. So…I listened to it (taking today’s photo on the way back to the tube).

Now I’m all tucked up in bed reflecting on my first real day ‘in office’. One thing I will aim to keep in mind, when beginning my first full week on Monday, is that I should see my new role as a marathon not a sprint. There’s plenty of time to do all the things I want and more, but it’s important not to burn myself out. So when I’m putting together my schedule for next week, it must include relaxation time…perhaps even a facial at the beauty parlour.

27/365 – Last day off

Tomorrow I begin my new career – the delay is over and I can’t wait to get started. No more daytime exploration of places like Somerset House (pictured above).

I’ve held off discussing my new role until now as I was waiting for security clearance. From tomorrow, I will be a civil servant working for the government department dearest to my heart, Department for Communities and Local Government (DCLG).

DCLG covers many of the issues I’m passionate about including housing and homelessness. I’ll be leading the digital content team for the department at a very interesting time – with less than 100 days until the general election.

Before starting my training tomorrow, there are a few important tasks to take care of today.

As it’s my last day of free time, I’ve just been to get my third blood tests in two weeks – having MG makes you feel like a pin cushion at times. This set is for my GP to see whether the chest infection has cleared or whether I need more antibiotics. After taking it relatively easy for nearly two weeks, I hope that I can get back to my normal routine. As much as I’ve enjoyed walking and resting, I’m yearning to put my running shoes on and pound the pavements again.

As you can see below – getting these tests done is never quick. Receiving a ticket with number 23 when the board says 9 is enough to make anyone’s heart sink.

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As part of the 10,000 steps challenge, I walked to the hospital in rain and hail to get the tests done. However, I still have around 5,000 steps to do today so it looks like I’ll be pounding the pavements slowly home.

The rest of my day will be spent writing up case studies for Rare Disease Day (more about that over the next few days), preparing for tomorrow and resting up. A big challenge for me over the next few weeks will be to continue the daily blogs and the healthy diet. I’m feeling great for doing both and will try my best to keep them going – if you feel I’m slacking please feel free to point it out.

Going back to work five days a week for the first time since September is both exciting and scary, but I’m ready to give it my best shot. First things first though – it’s time to enjoy the stroll home now that the clouds have parted.

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