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 using travel insurance

As I mentioned in my last blog, I had a relapse of double vision when in Uruguay in February. Before jumping to the treatment I received in Argentina, I want to talk about the experience I had with the travel insurance provider.

Ever since being diagnosed with myasthenia gravis, I have been particularly careful when choosing a travel insurance policy. I felt it was inevitable that one day I would need to use it and that time finally came in Buenos Aires last week.

Before calling the insurance company, I used the online doctor service that was included. It was literally a video chat with a British doctor who confirmed I should go to a medical facility to see a neurology specialist ASAP. So I phoned my travel insurance with her recommendation to check if there were any facilities that they would recommend, stressing that it was important for me that they could cater for English-speaking patients.

I hoped that it would be a quick call to the travel insurance just to get a recommendation, but I spent the next three hours having an on and off conversation with one of their staff.

After a long initial conversation about my condition and what the doctor had recommended, the assistant went away and then emailed me over an hour later with a list of rheumatologists in the city although I had told him that the doctor had recommended a neurologist. In the email, he also said I needed to phone each of them to see if they had English-speaking doctors.

When I phoned him back to tell him no I needed an English speaking neurologist, he told me I should consider seeing a rheumatologist instead…as if he had had a brainwave about treating the whole condition. Only after I was quite firm with him, did he eventually agree to look at neurologists. He then again emailed a google search of neurologists without any information about whether they spoke English but also said I should think about his rheumatologist point. Never in my years of having the condition, have I ever had a rheumatologist recommended and, from a quick check on the MG Facebook support groups, it’s incredibly rare that someone would see this type of specialist if they only have MG.

All the time we were having this back and forth ‘discussion’, I was in my darkened hotel room feeling my energy levels – which were at this point already very low – dropping. But there was no sense of any concern whatsoever from the insurance company assistant.

When we were on the way to the hospital I had found with English speaking doctors and staff, he called again to say that unless I had declared the condition I wouldn’t get any treatment paid for. Hardly the right time to bring this detail up! Of course I had declared it and paid the excess, which earlier I assumed he had seen on my file rather than adding stress to an already unpleasant situation after three hours of terrible service.

All in all, it was an utterly frustrating experience that seemed to lack in any kind of empathy. I know most people will not be shocked by this, but I do wonder why we allow an industry that is meant to be providing us a specific service to be so inept when we are at our most vulnerable? There is definitely a business opportunity for a kinder travel insurance company, or even a customer service team who ask callers once how they are doing.

I have now submitted my claim, so I look forward to seeing how that goes but I’ll be doing a bit more research about other providers the next time I take a trip.

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

Treating a set back like an experiment

So it’s happened again – just when I started to feel completely unphased by my myasthenia gravis I’ve had a set back. This is the way with a condition that fluctuates but it doesn’t make it any less annoying. 

Two days before I was due to go on a relaxing break to Spain my right eye starting playing up. I had a good night’s sleep and it seemed improved but then, the day before I was due to go, I had a later night than expected and woke on my first day off with a bad case of ptosis – dropping – on my right eye. 

My ptosis is usually mild now – a slight droop which is annoying – so I’d forgotten what a bad case feels like. I count a bad case as when my eye lid is almost or completely closed. No matter what I do it can take days or weeks to right itself and in the mean time it makes everything a bit more of a challenge. It means:

• looking anywhere other than down becomes problematic – looking straight ahead there is double vision as the right eye tries to adjust with a more limited field. This means I spend most of the time with my head tilted up and have more problems getting around
• having conversations becomes challenging – you can’t really look people in the eye because when you try their eyes move around their face. Oh, and you over-analyse every look of your conversation
• the eye lid feels really heavy and is constantly uncomfortable – I used to wear cotton patches during these times for comfort. It’s not great when working in front of a computer screen all day

I’m fairly sure that I’ve run myself down in the build up to the holiday – taking on too much and not giving my body the rest it needs. Then there was the sharp change of climate and routine which probably didn’t help either. 

Rather than waiting in a depressed stupor for things to return to ‘normal’, I’m taking a scientific approach. I’m testing out the impact of different things and will hopefully have more knowledge about how to treat myself next time. So far I’ve tried:

• Sleeping longer than normal – on holiday I had between 9-10 hours sleep a night. This is more than the  7-8 hours I get normally. This seemed to make it worse rather than better.
• Cutting out alcohol – after a break from booze, I had slowly reintroduced it to my routine and was having at least 2 drinks a day on holiday. Over the next week I’ll be removing alcohol again to see if it has an impact
• Upping my steroids – I’ve upped my steroid intake from 2mg to 3mg and hoping that extra tablet will help. If I don’t see an improvement over the next few days, I’ll increase it again
• Eating healthier – while I didn’t eat a lot on holiday, what I did eat wasn’t particularly healthy. I’m on a detox this week to aid healing including keeping it simple with just lean meat and green veg and lots of lemon water
• Cut down on caffeine – before I went on holiday, I was drinking more coffee than I ever have. While away, I cut down to 1 cup a day and I’m going to try to keep a reduced intake now that I’m back
• Rest – on holiday I did very little that could be described as ‘active’ for the first two days. I then slowly reintroduced exercise – gentle walks and relaxed paddle boarding. Now that I’m back I’m going to do less exercise than normal this week 
• Heat – unlike many others with MG, I find heat from a sauna, bath or weather works well for my body. Now that I’m back in an Autumnal Scotland, I plan to use the sauna every few days (as I had just before the photo above)

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.

345/365 – The struggles of Christmas-time travels

While the notion of being at home with loved ones over Christmas and New Year can be stressful for some (not me though mum), it’s a patch on the travelling over this period. Add busier than normal transport to  heavier than normal bags and the price our bodies are paying for over indulgence. It doesn’t make for a very rewarding experience. 

I’m travelling over to Dublin for New Year tonight and I’ve never been so glad to reach the departure gate for a rest. The presents for Elaine’s family, along with a little bit of bargain booze for the celebrations, and some of my own gifts meant I had to keep switching arms.   

It’s time like this when I’m reminded how much easier I need to take it now. Regular breaks were required between the entrance and departure gate whereas before I would always volunteer to take others bags as well as my own without really breaking a sweat.

I wouldn’t have dreamed of looking for a trolley in the past, but tonight I was desparately scanning for one without any luck. Alongside the upheaval of leaving the family and friends in Edinburgh, I felt like crying struggling between the check in to the gate and was kicking myself for not leaving more at home. 

Here’s hoping there’s a trolley in Dublin to help me get to Elaine.

329/365 – Looking and feeling better for a rest

It’s amazing what three days off can do if you don’t really have anywhere to be or anything to worry about. This weekend of quality time for Elaine and I was well needed in the build up to crazy season. What I didn’t realise was how much I needed a break just for myself. A chance to sleep for more than 10 hours a night, have afternoon naps and take everything at an easy pace. 

Over the last few weeks, despite taking it pretty easy with the nights out and getting lots of exercise, my eyes have slowly getting affected again by the myasthenia. Thankfully I’ve not had bad double vision, but typically it looked at its worst on the day of my work Christmas night out. While I’m used to them acting up, it’s also a little frustrating when this happens when I want to feel and look good. 

That self awareness continued into this trip. But, as if by magic last night after a few drinks with my girl, my eye is suddenly better. The rest and the lack of stress clearly helped, and on this occasion a drop of whisky did too.

After a lot of fresh, cold, air, and possibly in the aftermath of last night’s drinks, I’m feeling exhausted today. As we walked through the airport, I had to drag my legs and use a trolley to put my weight on. But after a good sleep again tonight, I’ll feel ready and able for the last push to Christmas. I can’t thank Elaine enough for giving me that space and time to recover.

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. 

226/365 – Stories of people with myasthenia at university – part 1 being a medical student

As discussed in my last post, it’s hard for me to imagine how different my four years at university would have been with myasthenia. Because I can only guess, I asked the Myaware Young group for real experiences of people who have studied, or are currently studying, with MG. Three lovely ladies were happy to share their thoughts and I plan to post them in three separate blogs to give them the space they deserve to tell their stories.

Gabrielle Petruso, who currently studies medicine, found her university supportive due to a ‘brilliant’ occupational therapist. 

She said:

‘Mine was supportive but a lot of that came through seeing a brilliant occupational health doctor who acted as the go-between. I had to have a “case conference” where I met with occ health, the welfare lady for our course and the curriculum lead. That was in the early stages of diagnosis.

‘It’s definitely affected my uni “experience”. I used to (probably still do) tire very easily in the evenings; going out-out to bars in groups kind of fizzled me out. I couldn’t really cope with dancing or standing for long periods and there aren’t many places to sit. I’ve never been much of an alcohol drinker but I do notice a slight increase in symptoms when I’m already flaring up a bit if I do drink anything. 

‘I do feel like I’ve missed out quite a bit, medical students go on electives towards the end of their training. I’d been planning/saving to go work in a hospital in Africa for 18 months before I was diagnosed a few weeks before my flight! ‘

So I missed out on that experience, and had to explain when everyone was back why I hadn’t gone and listen to their wonderful experiences. 

It affected relationships too – I was on placement geographically quite far from most of my friends this year which normally wouldn’t have been an issue as I was in my 3rd year too. But MG quite often meant I had to evaluate if late night travel or poor sleep on someone’s sofa was really worth it the next day!

With the academic side of uni, I think it made me more anxious. 

Because I was on my clinical year last year I was on my feet a lot and spoke to people nearly all day. Usually this was fine but flares were embarrassing and I was afraid of being misconstrued as being lazy or rude if I didn’t look up at the lecturer or daft/drunk/other if I slurred or spilt my drink all over my front! 

The nature of the course meant I was very worried about time I missed, and in that area I don’t feel like I was fully supported by uni. It was made clear that if I couldn’t meet outcomes I’d be resitting the year, so I either didn’t always tell anyone if I was missing time or often went in anyway even if I knew I should be staying home and resting! My appointments were away from where I was placed as well, which was an additional pain. 

As a medic your hours aren’t like a “typical” student’s; we had to do weekends, evenings and night shifts and switching between nights and days messed up my symptoms. Taking medication every 3-4 hours isn’t much fun either, and neither are the side effects of mestinon, or propantheline when you need to be able to speak to people all day!