Category Archives: Disability

Trekking in the Himalayas 

After a couple of days rest in beautiful Pokhara, I can hardly believe what the last week has entailed and how well my body has coped. 

When we decided to go to Nepal, we initially signed up for the Annapurna Circuit trek. This is an 18 day trek with 11 days of walking. However, neither of us have been above 3000m (the level that altitude starts to impact most people) before and the circuit trek reaches over 5000m. Our initial excitement was replaced by last minute panic, as I had no idea how much impact the lack of oxygen would have on my MG and the only option from some of the places along the way was to be helicoptered out. So we changed to a 6 day trek below 3000m – with equally stunning views and daily yoga sessions. 

Elaine and I joined a group of 4 lovely women to trek through squelching jungles and up the 2500m Panachassee mountain (Nepalis consider this a hill). Our daily schedule was a morning yoga class, a hike, an evening stretching session when we reached our destination and an hour of relaxation – mostly with the soothing singing bowl.

The Buddhist temple at the Panachassee summit.

How it went

Between the strength-based yoga sessions and the daily step count, I was nervous about how my body would handle its first challenge in an alien ecosystem. The walking wasn’t too strenuous – we spent between 3 and 7 hours walking each day. However we were battling a relentless sun, post-Monsoon season boggy ground, leeches, steep upward and downward ‘paths’, jungle insects, lots of creepy crawlies in our rooms at night, and, on one day, the heaviest rain I’ve ever had the pleasure of walking in (says something considering I’m used to walking in Scotland). 

The group also collectively battled a lack of sleep – from 2 nights before the trek I managed only broken sleep and this continued right through to day 3 of the trek. Because we were tired each night, we all wondered whether there was less oxygen above 2000m and whether this was impacting our zzzz time?! 

Our rustic accommodation in Bhadure.

Coping with sleeplessness

After another restless first night of the trek, I decided to double my steroid dose and take a pyridostigmine just in case. I only did that for one day as I felt strong and healthy during the other days.

When it came after 4 horrible nights, 6 hours of solid sleep left me jumping out of bed to embrace the day. I’ve never felt better than during the yoga session that morning in Bhanyajang – watching the Annapurna range appear and disappear behind the clouds and feeling like I could hold the poses for hours.

While it was psychologically challenging, the lack of sleep didn’t challenge my body as much as I expected. In fact, I’ve rarely felt better than during those five days of circadian rhythm and healthy eating. 

Back to basics

The accommodation was rustic, with Nepali rather than western toilets (essentially a tiled hole in the ground), cold water, no electricity for part of the trek due to thunder storms and, shock horror, no internet. However I adapted quickly and was a little upset when the electricity returned. Saying that, I was so grateful for a bucket of hot water during my last night in Bhanyajang that a few moans escaped as I tipped the water over my head and felt my tired muscles relax.

Our toilet in Bhanyajang.

All good things must come to an end

We watched the landscape change from a quaint mountain village with locals lounging and Tibetan women selling bright jewellery to woodland paths; from dusty tracks to open hillsides; from endless stone steps to dense jungle full of mutlicoloured butterflies; from fields of buffalo grazing to hilltop temples in the mist; from ridges with endless mountains in the distance and eagles swooping to rice and millet fields lit up by the warm afternoon sun. Finally we found ourselves back in a different village in the throws of Dashain celebrations – giant swings are made out of bamboo and bright coloured decorations on the streets.

By our 6th early morning of yoga back in Pokhara, my body was tired and I felt fatigued as we travelled to our new hotel. But taking a nap right away followed by a couple of rest days helped my recharge and I found myself back on my brand new yoga mat two days later.

Having loved Panachassee trek, I’m determined to try a longer, more challenging trek in the incredible Himalayas (with some kind of sleep remedy in my first aid kit). We’re likely to be above altitude in South America for a short time so it’ll be a good test to see how my body responds. Hopefully I’ll be able to tackle the Annapurna Circuit or something similar in the future as the thought of spending triple the amount of time out in that beautiful countryside fills me with pure joy. 

Walking through rice fields on our last day of trekking.

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!  

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.

353/365 – Researching the timeline of Myasthenia

While researching a timeline of myasthenia Gravis that I’m putting together, I came across an interesting quote about it from the start of the 20th century.

Until the 1930s, the treatment for MG was described as a ‘source of disencouragement to the patient and a cause of nightmare to the physician’.

Disencouragement wasn’t all it said – one of the forms of treatment was also avoiding excitement. Although at that time, myasthenia wasn’t necessarily a death sentence, avoiding excitement sounds like one to me. People confined to dark rooms for years on end – worried about laughing too much or even forgetting what laughter feels like. It made me incredibly grateful to be alive in this day and age. 

I know the reality for some people now can be like this in fluctuations – it can feel like all the things that bring enjoyment make the MG worse. But, with modern medication and research always trying to improve that, most people I’ve met with MG are able to build a life where enjoyment is not ruled out. So we are lucky. 

351/365 – Dating and myasthenia

The recent discussions about TV show the Undateables, specifically the rugby player with Tourette’s and aspergers, have got me thinking this week and ready to try a little experiment…

First of all, I am allergic to the term Undateable due to the suggestion that those with disabilities are inferior to ‘dateable’, read normal, people. Being ‘Undateable’ is subjective – some people wouldn’t be who I would choose to date but others would.

If anyone ever suggested to me that I was Undateable because of myasthenia, I would question whether being shallow and rude makes someone a better catch. 

However, from what I can see, some of the show’s participants feel that they are undateable and that’s a really sad statement about the society we live and love in. 

It made me think about what dating is like now and whether people with disabilities like myasthenia are at a disadvantage. In the swipe left culture of dating apps and websites, where matches are selected entirely based on looks, where does that leave people with disabilities who want to date? 

I’ve heard many friends’ stories about their frustration with online dating for this very reason, but I think it goes deeper than the shallowness. Love is rich and complex, whereas dating seems to be just complex with a lot of waiting to see whether that person they went on one date with, who has a spark of potential, thinks they’re good enough. Unless you check every box, there is the possibility that there is always a better choice out there.

Anyway, now for the experiment. I’ve decided (if Elaine will let me) to put a symptomatic picture up on a dating website to see what the response is like. It’ll need to be one of the free ones as my budget for this is zero but I’ll keep you updated.

Do you have myasthenia and any dating stories to share?

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.

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.

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:

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. 

314/365 – Faces of myasthenia 

Walking through hipster haven Shoreditch recently, I spotted an advertising campaign of Tech’s top talent. The point of the campaign was not only to celebrate the individuals featured but also to show the diversity of the tech world. It reminded me of an idea I had a while ago for showing the diversity of the myasthenia community. 

My idea was simple: show the range of different people affected by MG through photos. This differs from the world map I blogged about last month as the faces should have more of an impact on people who come across it. Originally I had thought in the UK, but given the international engagement with this blog – why not do it on a worldwide scale? 
Again, originally I had thought of a calendar but it would be unlikely that anyone outside of the myasthenia world would see it. So why not create something that could be shared on the internet? It doesn’t mean you can’t do the former as well, but this has the potential to reach more people and create awareness.

My thoughts moving forward with this:

  1. Put a call out for photos of people with myasthenia – alongside the photo I think it would be good to have your first name and country you are from
  2. Ensure all images are edited to the same proportions 
  3. Create a Flipagram with all the different images (click here to see a previous example I did on Flipagram)
  4. Share it on social media and on the blog – encourage you to help get it seen as widely as possibly. I thought to help to get this shared and seen, a hashtag like #facesofmg (possibly linking in with #ihaveheardofMG) could work.

If people don’t send me their pics, I could use the #ihaveheardofmg photos as a starting point.

So, it’s over to you – what do you think? Would you be willing to take part?