Tag Archives: myasthenia

Travelling and myasthenia gravis

I’m back in Scotland after travelling around south east Asia with my wife Elaine and I have one thing to say to you: long term travelling is possible with a condition like MG. But more about that later. Over the three months, we spent time in seven countries:

  • Nepal
  • Thailand
  • Vietnam
  • Cambodia
  • Singapore
  • Indonesia
  • Laos

Although many of the countries were neighbours, they were very different culturally and politically which meant there were big differences in how developed they were and, as a result, what the medical facilities were like. The last point would not be a consideration for many of the travellers we met along the way, but Elaine and I were constantly aware of how likely we would be to survive a hospital trip if it was required.

During my time in Thailand, our second country, I made a decision – that blogging about the trip was getting in the way of my ability to be in the moment. Often we only had a few days to truly immerse ourselves and I didn’t want to spend that time doing the reflecting that I felt might be more meaningful from a distance. So I stopped, hoping that I’d have a few things to say once back in Scotland.

Now that I’ve had time to process it all, I’ll cover different topics that came up during the journey over the next few blogs. I’ll be posting these between now and when Elaine and I head over to South America at the end of January for our final three month stint.

For now though I want to say loud and clear; travelling for an extended period is do-able for someone with myasthenia gravis (MG). I repeat, it is do-able because I definitely have MG and I’ve returned from three months away happy and healthy. Saying this, I had the go ahead from my consultant after coming off the drugs that suppressed my immune system and getting all the relevant injections. I would NOT suggest trying it unless you can get the same thumbs up from a medical expert.

Naturally, I was nervous about how I would cope and while I was planning I couldn’t find anyone with MG saying you can do this. But as travelling for an extended period to far flung continents has been a dream of mine since long before I was diagnosed with MG, I had to try. And I knew it was important to try while I was feeling healthy and strong as with this condition nothing is guaranteed.

Fine, I had to adapt my dream: from a solid year of backpacking down to two three month periods because I am still taking medication (prednisolone) and that’s the longest prescription I could get. I also won’t be able to go to any areas with yellow fever in South America (the Amazon for instance) because I can’t get the yellow fever jab as it’s a live vaccine.

Although it’s cost us more money to go and come back home and then go again, it’s given me time to catch up with loved ones, get blood tests done to make sure I’m really doing ok, to sleep in the same bed for more than three nights in a row and to recover my strength before the next leg.

I already know it’s the best thing I’ve ever done and may ever do. Don’t get me wrong: there were hard days and times when I wished I was back in the safety of my pest-free and tropical disease-free flat by the seaside. But then there were days when I felt more alive than ever before; like when we snorkelled with wild turtles in Indonesia and spent the day looking after rescued elephants in northern Thailand. These two things alone were worth every possible risk and will stay with me for as long as I live.

A photo taken on our rented Go Pro off the coast of Gili Meno, Indonesia.

So if there’s one big takeaway for me, challenge your I cants and be willing to adapt your plans to make them fit with your MG or whatever it is that you’re struggling through. There may be a way of making your dream come true if you’re flexible and brave.

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!  

151/365 – Smoking relapse

The cigarette I always enjoyed most during my years as a smoker was the summer one in the sun with a drink in hand. It completed the state of relaxation and it’s the only time now that I still crave to have one. Until I have a packet of Marlboro Lights at my disposal I’m never fully relaxed and occasionally I cave in to the craving. This normally has to do with my state of mind – if I’ve been extremely busy, stressed or upset about something, I’m much more likely to give in. Or if I am with someone who smokes. While I have been relaxed and happy on this holiday with my group of friends, one of the dream team smokes. Alongside the perfect conditions of lots of sun and lots of cervezas, I caved many times. 

Smoking and myasthenia

When I first learned about having myasthenia, I was encouraged to stop smoking by my consultant as it aggravates auto immune conditions. After a period of self destruction, I more or less did only occasionally giving in when I have had a drink. 

My friends mum, who is a pathologist, told me on this holiday that smoking is also thought to cause auto immune conditions. This was the first time I has heard it. So actually I may have myasthenia in part because of my years as a smoker. 

Why continue?

Like any addiction, it takes incredible strength of mind to quit. After Christmas I cut down the amount of sugar I was eating and managed to maintain this for several months because I wasn’t working and had plenty of time to plan what meals to eat and to research what sugar does to the body. Before I finished up work, I was incredibly busy and when I get into that state I find it hard to say no to the easy pick me up of sugary snacks. Cigarettes are the same for me. I need to have a clear reason in my mind, and the mental strength to reinforce it, if I am to say no to my cravings. While I haven’t been stressed on this holiday, there has been a residual amount left over from the weeks before I finished work. This meant I gave in again and again without any kind of fight. 

No more smoking 

While it would be unrealistic to say I will never smoke again, I don’t want to feel like a failure if I do, from today onwards I am going to try to fight back if my nicotine cravings kick in. To help with this, for the next few months, I’ll try to avoid being out for a drink with anyone that smokes. Thankfully that is very few people in my life. Avoiding putting myself in this situation should help initially. I’m also going to do some research about better ways of coping with stress and get back into my fitness regime when I get home. The fitter I am I find the less I want to smoke normally. Hopefully, the combination of these three things should stop any further relapses. 

135/365 – 22kms of East Sussex countryside

With just a week to go to the Camino, this weekend was the last opportunity to clock up some miles before following the yellow arrows through the French-Spanish border. Leaving the house before most people even roll over on a Sunday morning used to be a weekly occurence for me in my football-playing days. However it’s rare these days and I struggled to get out of the door in time to meet our friends for the long drive ahead. 

By midday we arrived in Crowhurst, East Sussex, bursting for the loo and with nothing but a church and a closed train station in sight. Thankfully a kind minister/priest/vicar let us use the facilities (I would highly recommend if you’re in the area). Much relieved, we set out on our 20/21/22km trek (depending on what book/app you use). With the sun warming our faces, many striking panoramas and a reasonably flat gradient, the first 10km flew by and before we knew it we found a seat in the sun and were tucking into Westfield’s finest fare, and cider, at the New Inn. 

After hearty lunches, the second half was a bit trickier. Thankfully the views were even more striking as we carefully manoeuvred our way through bluebell meadows, burrowed through enchanted woods (at one point expecting a wicked witch to jump out), gazed at thatched mansions and then had to battle our way through thick nettles for hundreds of metres.  

Despite our more adventurous second half, my knee and the myasthenia behaved well. By the time we reached the last climb, I still had plenty of energy, my muscles felt strong and my feet showed no signs of blisters. Time to celebrate with a pint! 

As I supped my celebratory cider, in Battle (of Battle of Hastings fame), a smug smile spread across my face. My cross training has paid off, I am strong and I am ready – Pyrenees, come at me.  

   

134/365 – Mood swings

Up until yesterday I had been feeling  blue for a while and couldn’t work out why. I spent time writing out all the possibilities, and there were a few things that were probably contributing, but something was missing. I’m a pretty self aware person so it was frustrating me that I couldn’t put my finger on exactly what was causing the sadness. I had a tightness in my chest, I found myself crying very easily, and was taking offence over nothing.  I wanted to feel better but I didn’t know where to start. 

Yesterday I read a post on the Myaware Young People Facebook group that instantly made me feel better. It spoke of the dip in mood that some people have when stepping down the steroids. It suggested that my body is likely to panic as I work my way down and this triggers the altered mood. Apparently it will last for a few weeks but as I’m stepping down 1mg every week at the moment it could be longer. However, being able to identify why I am feeling bad, and knowing that it is out of my control, made it instantly easier to cope with. 

As a result, I found the energy to do some things that make me feel happy yesterday and today. With the sun shining, I put on my happy yellow dress and decided that it was going to be a great Saturday. So far it has been.

Because my side effects aren’t bad, I  often forget that I’m putting these chemicals in my system every day. I have to remember it’s natural to be affected by them and I can now focus on finding the energy to do things that make feel good. When I can’t, I must cut myself some slack and quietly wait for the lull to pass.

133/365 – Blood test blues

As I’ve increased the amount of immunosuppressant I’m on, my consultant has asked me to increase how regular I’m getting blood tests. So now I’m going to the hospital every 4-6 weeks to be ‘stabbed’ as one doctor once said as she was doing it. 

Yesterday I thought I would sneak up early, before the crowds, to make sure it was quick and painless (or as painless as could be expected). Big mistake – when I arrived the number being called was 75 and I was number 16. Meaning there were 41 people to get tested before me. Swithering briefly whether I should stay or come back again later, I decided to stick it out as it’s about a 25 minute cycle there and it was unlikely I would have time before I head off on holiday next week. 

An hour passed before I was called up – yet this is the ‘best’ option according to my doctors. I’m unlikely to hear anything until Monday now but hopefully it’ll be all clear. 

With the potential side effects, I get that it’s important to have regular tests and that I’m incredibly lucky to live in a country where we have free health care. Still I must say I’m looking forward to being able to go back two monthly ones. 

130/365 – Shaky yoga class

Today I had an odd and rather embarrassing experience. After about a month of not being able to attend my weekly yoga class, in desperate need of some inner calm, I finally made it along this afternoon. The instructor I love – the best yogi I’ve ever had – is on maternity leave. As I arrived a little late, there was only one space left – the one normally reserved for the teacher facing the class. Is he secretly a time-nazi intent on punishing me for being late, I thought? My conclusion is he may well be.

Although I’ve been doing yoga on-and-off for a few years now, my downward facing dog was not ready for the attention/scrutiny of a full class. Heightened by the copious amount of caffeine consumed in the morning, the lack of yoga practice and the fact I forgot to take my second dose of mestinon, I shook violently in almost every pose. I was a lot less flexible than last time I practiced and I seemed to be breathing like an angry gorilla. 

I tried to avoid eye contact as I convulsed my way through the sequence of poses but snuck in a quick scan to check none of my colleagues were there. Thankfully they were not. I was particularly glad of this when I lost balance during a standing pose and almost toppled the teacher. The shade of pink I had been flaunting for most of the class darkened to scarlet at that stage. 

I waited for that inner calm that normally comes over me at yoga but it never arrived. However, the deep stretches eased my tired body. I’ve felt like I’ve been taking relentless body punches from Floyd Mayweather Junior recently, so I was glad of the relief. While this was a silver lining, along with the fact that I was wearing my Myaware t-shirt so perhaps it got some people curious enough to look the charity up, I’ll make sure I’m on time next week to save anymore inadvertent ‘teaching’.

129/365 – Cuts and scratches 

One of the interesting things about shifting medication is the little changes you notice. Whether it’s mood related or physical, it’s important to keep check on the subtle reactions that happen in your body. One I’ve noticed recently – not for the first time – is that my skin is damaging a lot easier and taking longer to heal. 

When I changed my dose of aziathioprine last year, 50mg to 100mg, the same thing happened. My hands were continually covered in little cuts and my legs would bruise at the slightest brush. After doing a bit of reading about it, I started to panic thinking that I may be developing cancer – as I was given lots of warnings from my consultant about it being a potential side effect of the immunosuppressant. However, after a fortnight or so my body started to adjust and the little scratches and gouges disappeared. Now that my body is again struggling to deal with the shift in aziathioprine dose – from 100mg to 150mg – the gashes have started to appear again. 

The strange thing is I don’t feel it when I hurt myself – it’s as if my skin rips of its own volition. On Friday I was sitting in a meeting and suddenly realised my hand was bleeding. It’s the same with my legs – the bruises magically appear.  No doubt my wander in Columbia Road flower market yesterday (image above) will have added to my bruise collection.

You can see one of my recent cuts in the photo below.

 
While I’m not as worried this time, it’s probably worth raising with my consultant when I see him later in the summer. Better safe than sorry.

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.

123/365 – Small world part two

So in my last post about the world of myasthenia being small I wrote about a workmate who’s son has congenital MG. Despite the fact that there are only 10,000-12,000 people in the UK and Ireland with the condition, I found out this weekend that someone I knew when I was younger also has myasthenia. She is around the same age but has had it for a lot longer than me and has not coped well with it. There must have been something in the water.
I don’t think it is fair to this person to say anymore, but it has made me realise once again how lucky I am to have developed MG after I had found my place in the world. 

I wonder if many people with myasthenia know others from out with the Myaware community, whether from childhood, work or hobbies, who have the condition? Is this strange?