118/365 – Acid reflux and myasthenia medication

I am one of the unlucky people with myasthenia – a drug I take triggers acid reflux. I’m pretty sure for me the trigger is the mestinon as it usually comes on around 5-10 minutes after I’ve taken a dose. However, I asked other people with myasthenia and it seems for others the steroids can irritate their stomach lining causing the same burning sensation. 

The reason I hate it is because each and every time the acid reflux comes on, I am flooded with fear. It feels like everything below my chin and above my waist is filled with fire and if I move even a little my whole body will set alight. I sit incredibly still when I have it, my breathing suddenly becoming laboured, and wait it out. 

I also hate it because there doesn’t seem to be a pattern for when it will occur. If there is, I haven’t cracked it yet. I can have exactly the same kind of sleep (as far as I’m aware), have the same morning routine down to the time I eat and some morning’s I’ll have acid reflux by the time I leave the house while other times I’ll go days without the sensation. 

It was slightly more predictable when I wasn’t taking omeoprazole as I would get it much more regularly. While this drug has made acid reflux less regular for me, it certainly hasn’t stopped it. I would be intrigued to hear if it has put a stop to this for other people, so please do post a comment if that’s the case for you.

I have managed to spot three things that do increase the risk of it:

  • Drinking something hot before my omeoprazole has had a chance to settle.
  • Not eating before I take a mestinon tablet. 
  • Doing vigorous exercise right after taking a mestinon tablet.

The acid reflux is one of the things I hate most about living with myasthenia as it still sends shivers (or the hot equivalent) down my spine each time it comes on. When it starts sometimes I feel like crying and hope it isn’t one of those days when it repeats over and over. The omeoprazole has made this rare but it still happens from time to time. 

Anyway I’ve decided from writing this, and realising exactly how it affects me, that I’ll bring it up with my consultant in the summer. It may be that there is something else I could try or perhaps cutting down the mestinon/coming off it completely will be a possibility by then. 

117/365 – Sex and myasthenia gravis

This is a difficult post to write as I know a large number of the people who read this blog are friends and family. Still it would be remiss in a blog about living with myasthenia not to discuss how it affects sexual relationships and how having MG feels for a sexual being.

Physical symptoms

Let’s focus on the mechanics of sex first of all. Regardless of what your preferences are, the muscle weakness and fatigue associated with MG can affect performance in the bedroom. In any kind of repetitive motion, MG muscles can get tired, shaky and easily cramp. Sometimes it’s very clear from the start that you are not going to be able to keep up a certain position or motion. When it becomes more about trying to hold a pose than enjoying the moment that’s when you need to be assertive.  Other times the weakness can come out of nowhere – there have been times when I’ve felt like my arms or legs would suddenly give way. While this can be part of having intense sex for anyone, it is the lack of control over your muscles that feels frightening. 

Saying this, I have never had to say no to anything because of myasthenia. Knowing your body’s limits is important when it comes to sex, but don’t be afraid to step outside your comfort zone. Once again, listening to your body is vital.

Communication

Communicating how you are feeling is vital for people with myasthenia when having sex. No matter if it is a one night thing, a casual set up or a long term relationship, respect yourself and your body enough to be open about how you are feeling. If you are struggling in a certain position, suggest something else. Certainly from my own experience, sex is much more rewarding if both parties are equally enjoying themselves. Don’t be a martyr – speak up about what is working for you and what isn’t.

Vision

While it can have less impact than more general physical symptoms, issues with vision caused by myasthenia can affect sex. For instance I often joke when suffering double vision that I’m going to bed with two women. My way of making light of the fact that I would have to close one eye to see which version of Elaine to pay attention to. 

Emotional impact of MG on your sex  life and drive

So here’s the difficult part – the emotional side of how MG affects you as a sexual being. I’m sure I’m not alone in this – I enjoy sex less when my symptoms are bad. If my eyes are looking bad, I hear a voice telling me not to look into my partner’s eyes as it might turn her off. When my voice is affected, I’m less likely to talk in bed with the fear that it will come out slurred or lisping (again putting her off). I’m worried that my chest scar is all she sees. In spite of the fact that I’ve had nothing but loving reassurance from my other half, I do struggle.

My confidence is dented, however it is much better now than it was when I first had symptoms. This is because I’m very lucky to have a partner who makes me feel sexy and I make an extra effort to make myself feel that way. How do I do this? I look after my body, I make an extra effort to ‘get in the mood’ and I try to shut down the voice that wants to ruin my sex life. I tell myself that I deserve whatever kind of sex I choose, within legal limits, and I fight the mood killing myasthenia woes. 

If I was not with my partner it would definitely be more of a challenge to shut those voices down but I would keep fighting to do so. I firmly believe you shouldn’t let anyone else define how sexy you feel nor should you let myasthenia stop you having a healthy, happy sex life. 
 


116/365 – First duathlon complete

Well I made it. 

It took my friend and I around two hours and 25 minutes to complete the 4km run, 22km cycle, 4km run challenge and we were both delighted with ourselves. 

When we arrived it became clear pretty quickly that this was an event for ‘competitors’. These people took their performance seriously and, collectively, their bikes must have been worth a small fortune. It was both intimidating and easy to pull ourselves away from that mentality. When we got a row for breaking the rules – using my phone in the transition area, not showing the race number on my top, not dismounting our bike in time etc – we laughed at how anal the organisers were. In the end, when they realised we weren’t the average duathletes taking part in this race, they changed to be  supportive and encouraging. 

The weather was grim – cold and wet – but the setting – quaint Essex parkland and villages – was lovely. Most of all, the physical challenge wasn’t too strenuous and I really enjoyed the near 22km cycle. This came as a bit of a shock as I am used to cycling in the stop-start London environment. The thought of doing that distance uninterrupted was daunting. Aside from a bit of lactic acid on the last hills,    I felt comfortable with the distance and look forward to building on that in the lead up to my 60 mile cycle in September.
When we crossed the final finish line, we were met with cheers. Although we had come in last, we found out afterwards that the person who had won had been disqualified for a technicality. I felt frustrated for that person but also glad that it wasn’t just us breaking the rules. Although I can’t say I’m massively keen on the anal attitude at these events from what I witnessed, I enjoyed the physical challenge and look forward to booking another duathlon soon. Now that I know some triathlons use swimming pools, I’m thinking about signing up for one of those too. 

 
How was my myasthenia affected?

The combination of a poor sleep the night before and a couple of pints after the event meant that my right eye was a little heavy last night. The ptosis had set in. But after a good rest yesterday, I’m feeling great today. I held off taking my steroids down a MG this morning to give my body the best chance to recover, but physically it feels great. There were no shaky legs yesterday and they’ve stayed strong today.

All in all, it feels like another victory over the myasthenia and another triumph for my body working with me. 

115/365 – Day before the duathlon

Tomorrow is a big day for me – my first ever duathlon. Although it is a mini one (4km run, 20km cycle and 4km run) I’m excited, nervous and intrigued about how it will go. 

From my experience of doing running events, the way you behave the day before massively dictates how you find the run. I’ve done events where I’ve been training regularly but the day before I’ve misbehaved (ate the wrong thing, had a few drinks, smoked a lot etc) and I’ve found it a real struggle/been unable to finish. Once I ended up in an ambulance after passing out. There was another time when I didn’t know I was doing a half marathon until the day before but because I rested and ate well on that day, I finished it comfortably. 

At this point I am feeling strong and well rested after a 10 hour sleep. I carbed up last night with spaghetti bolognaise and intend to do so again tonight. I am drinking a lot of water and plan to do so for the rest of the day. I haven’t done any running or cycling since Tuesday and the muscle aches I was feeling earlier in the week have vanished. I’ve done a light run with Elaine and Sarah to loosen up before the journey through to Essex for the event. 

Other than have an early one tonight, have no alcohol and make sure I eat carbs, at this stage it feels like there isn’t anything else that I can do. I turned down a Bermondsey craft beer crawl today which was definitely the right decision although it was difficult at the time. 

We will head through to Essex in the early evening to make sure we’ve got lots of time to wind down before bed. Then it’s game on. 

114/365 – 36 hours in Paris

We are finally on the overnight bus back to London. This is after a two hour wait for a new bus to come when the one we were meant to be getting was deemed unfit for purpose. Apparently there was an issue with the windows – that’s why we were left sitting on the ground outdoors at Port Mailot bus park until 12.30am. Thankfully the weather was clear and it was still quite warm – we also had some good chat and shared beers with fellow frustrated passengers.

Excluding the second eventful Megabus journey in two days, I had a lovely time in Paris and felt great for relaxing in the sunshine. After the delayed start and on-off sleep during the journey, I was expecting my symptoms to increase. Thankfully my body worked with me and I felt strong throughout the 36 hour period. 

Day one

After we got freshened up in our chic hotel, we made our way through the salubrious streets of Pigalle to the Moulin Rouge and then climbed to to the Sacre Couer (below).  

After wandering in Montematre village, we headed towards the Eiffel Tower. Sarah climbed it while I found a spot in the grass to read and relax. The tiredness began to set in and I realised I was ready to go back to the hotel for a rest – plus there was a bath in our room which had my name written all over it.

After soaking in the tub for a long time, I emerged to find my travel buddy passed out. A bit of Iggy Azalea soon woke us up as we took our time getting ready for our one and only night in Paris – the half bottle of red wine I had treated myself for a whole 3 euros was getting me in the mood for more. 

We headed back towards Moulin Rouge and, as Sarah was keen to try some French cuisine, we chose Le Chat Noir which had all the must try’s – escargot, frog’s legs, duck confit and steak tartare for me.  


  
Meeting a lovely couple from Sheffield, we nearly ventured with them to Bastille but it was already midnight and we had our eye on somewhere near by…a karaoke bar. And so that’s how we passed the next three hours – singing and dancing to many classics (and some unknown French songs). We each had a solo, Sarah with Like a Prayer and me with a bit of Shania Twain. Then collectively we killed Stevie Wonder’s Superstitious but had a blast doing it. The evening was topped off with Sarah blasting out Eminem’s Lose Yourself. We were singing all the way back to the hotel.

Day 2

Lying in as late as we could to make breakfast, Sarah opted for longer in bed and I demolished fruit, yoghurt, pastries and crepes. I knew I would need lots of energy as our main plan for our second day was exploring on foot.

We started at the Jardin de Luxembourg, exploring one of the most beautiful gardens I’ve ever visited. 

  
We then walked through the Latin quarter to the Seine along to Notre Dame. After a quick queue, I took a seat with a view of the main altar and considered all those who have come to worship and admire with hope in their hearts over the several hundreds years. Again it made me think of all the things people with myasthenia can learn from religion. 

From there we walked back along the Seine to the Tuilleries, out into Plaza de Concorde and then along the Champs Élysées to the Arc de Triomphe. The sun was high and warm, so I was making sure to cover myself up completely and keep in the shade as much as possible. 

By the time we reached the Arc, it was almost time to head back to pick up our bags. There was just long enough to admire the intricate friezes of classical rulers who inspired Napoleon.   

As only to be expected for those familiar with the company, there was an issue with our Megabus on the way home – as there had been on the way. This meant we ended up having an hour and a half picnic on the Tarmac of the bus ‘station’ with some fellow passengers – Snow White from Disney land Paris, a New York musical theatre fan and an Orcadian freelance journalist heading home to cover the election. 

After a difficult night of on and off sleep, we got back to London at 9am and headed straight home to bed. It was only when we woke up after the nap that we were able to speak about the fantastic time had. Believe it or not, we even said we would consider doing the megabus again because at least we had plenty stories to tell. 

While I couldn’t do it regularly, making sure I got enough rest in the build up to Paris and taking time to relax meant the overnight journies didn’t affect my experience. Paris j’taime and I won’t leave it so long next time. 

  

113/365 – #IhaveheardofMG

Fantastic news – a hashtag raisong awareness about myasthenia is reaching thousands of people across social media. #ihaveheardofMG has had more than 620 tweets and nearly 145 posts on Instagram. Due to the amount of shares and people who have stumbled across it, it has, according to the below tweet, reached more than 58,000 people. That’s incredible work.   

According to a member of a Myaware group I am part of, it was one woman in Florida who came up with this idea. Putting my hands together for this woman with the upmost respect. Having tried to get people involved in doing a #100daysofmyasthenia, and so far having no luck, I know how difficult it is to get people engaged. Well done and let’s keep it going. 

Why does it matter?

The more people that are aware of MG, the better the chances are of quicker diagnosis. It may also be easier for corporate fundraising if the condition gets known by more people – the name sticking in their mind when it is time to choose a charity to support. Most of all it will help those with MG feel understood if more people know their condition.

If you have a social media account and have read about MG through this blog, please send a picture of yourself with a message including #IhaveheardofMG. It will be greatly appreciated by me, all the other people with MG in the world and the future generations who may get a quicker diagnosis because of you. 

112/365 – Bonjour Paris

As I described in yesterday’s post, last night was my first over night bus journey since being diagnosed with myasthenia. Calculating the amount of sleep you get on an overnight bus is near impossible. It comes in minutes rather than hours, it’s fickle and frequently broken by noises, both human and mechanical. When a rare comfortable position is found, you drift into such a deep sleep that it feels like you may never wake up. When you do it’s with a fright. You find villains – talkers, snorers and rustlers. You also make friends – those also enraged by the villains.

Our journey was 13 hours rather than 10, with a ferry crossing starting at 2.30am. Nothing for it but a nightcap (see below). While not great for the MG, when we returned to bus I slept for more than two minutes at a time because of my cerverza.

 
Although Sarah and I mentioned seeing the sunrise, we slept through it and woke up to blinding French sunshine. By the time we reached the outskirts of Paris, eating some breakfast to take my medication was priority. At this stage, dazed and confused about how the past hours had flown by, we both realised that, dare we admit it, we were feeling ok. Good even. Now we’ve made it to our Pigalle hotel, we’re ready to take Paris on in the 35 hours we have to share with the city.   

111/365 – Overnight bus to Paris

A while back my friend Sarah and I had the genius idea to go to Paris together. It’s only two hours away from London on the Eurostar, she’s never been, I love it and it just so happens she had booked to come down in April – coincidence, I think not. The logistics ( read price tag) however were not so lovely. Unless you book months in advance, Eurostar seems to be only for people with money to burn. Sarah and I are not part of that throwing cash away gang. Flights were almost as bad with the added expense of the train to London’s airports. There was only one viable option – a 10 hour megabus overnight both ways. Why not, we thought. We’ve got the time and overnight travel means no spend on accommodation. It’s kind of perfect, meant to be….

We’re on our way now having ‘checked in’ at the Megabus desk in Victoria station.  

Two hours in and I already have a numb bum. Plus there’s a 2 hour delay due to congestion at Dover Port – not all bad as it means we’ll be arriving in Paris at 8am rather than 6am. 

  
This overnight travel will be a real test for my myasthenia. I’ve not done an overnight megabus since before my diagnosis due to the fatigue involved. As I’m currently stepping down the steroids, I’m going to try to get as much sleep as I can to compensate. Still it will be interesting to see whether my body is affected.

If it is affected, I’ll be in one of my favourite cities in the world. If our check in isn’t first thing I can find one of many amazing parks, like below, to relax in tomorrow or perhaps find a good spot beside the canal. The best thing is when I wake up I’ll be in PARIS…and there will be French coffee and pastries and sunshine. 

  

110/365 – Adapting to a lower steroid dose

I’m now down to less than half the steroid dose I was on at the start of the year. My consultant is keen for me to come off the steroids completely and at present I’m working my way down by 1mg a week. By the end of May I’ll be steroid-less at this rate, however around the same time I’ll also be walking the Camino. I’ve been told to adjust accordingly so it may be June before I’m completely free of them.

Right from the start, the steroids have been a challenge. First of all there was the preconception of what they would do to my body that made them really hard to swallow. I was determined not to bloat or have the ‘moon face’ look associated with the drug and so made it clear I did not want a high dose. When I started taking them, I was even more religious about my exercise regime for fear of waking up one morning bigger than when I went to bed. Although there was a appetitie increase on them, I thankfully didn’t bloat. What I did find is suddenly I had a surge of energy that made it hard to sit still. I wanted to do it all now and wasn’t particularly fussed about rest or sleeping. Elaine used to jokingly ask for a dose when she felt that she couldn’t keep up with me. After feeling low and fatigued for a long time, it felt incredible to have energy to spare. After a few months that levelled out, and the effects became less noticeable. 

A long goodbye

I’ve been gradually reducing my steroids since last summer, but when my speech symptoms or muscle fatigue flare up my consultant has encouraged me to step up the mgs. I think that’s partly why I’m not feeling too smug about being on a low dose – I know my MG could turn and I will be right back where I started. Or will I? If my symptoms do flare up before I’ve come off them completely I’ll try stepping up just a few mgs and see how I get on. 

Doctors are keen to get you off steroids because of the risk to your bones, the increased risk of high blood pressure and diabetes – who am I to argue. 

The first time I take another one 1mg pill away, I start to think about all the what ifs. But this is part of the master plan – first stepping down my steroids, then being completely off them, then gradually reducing the aziathioprine and mestinon. Finally, a drug free existence. While I know it won’t be today or tomorrow, it’s a step in the right direction. When I think about a day when taking tablets is not my first priority, coming off one drug actually feels like a significant step forward.

109/365 – Damaged nerves from thymectomy

It’s been more than six months since my thymectomy but my scar and the memories of hospital food are not all that I’m left with. From what I read, I’m not alone in this.

When I woke up from the operation in intensive care, I felt like I had been hit by a truck and it took all I had to focus on breathing and not crying from the pain. However, once the initial pain of the trauma decreased I realised that the back of my right arm felt strange. 

As a teenager, I had fallen on my knee while snowboarding on a dry slope and the impact made my knee feel numb to touch and tingly for years. The back of my arm felt exactly the same but all it had done was have a little sleep while my chest was being cut open, right? Clearly not – when I told the nurse about it she spoke to the surgeons team. They said it was probably temporary nerve damage from the way I was lying during the operation. That it should disappear after a short period of time. 

I’m still waiting for it to go. Most of the time I don’t notice it, but after exercise it goes a shade of red that the rest of my body does not. It also tingles more than anywhere else if I’m cold and go in the shower. Occasionally it gives me an uncomfortable sensation when someone touches me there. Overall, I know I’m lucky compared to others.

I’ve read of people who have had the full thymectomy and lost sensation in their chest and elsewhere around the area. That must be really difficult and affect so many different aspects of life. Mine is just occasionally uncomfortable and a bit weird. Hopefully, like my knee, I’ll eventually regain full sensation.