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)

3 years of myasthenia gravis

This month marks my 3 year anniversary of myasthenia gravis diagnosis. I realised this today with a bit of a shock and found myself asking how 3 years could feel so long and short at the same time?!

Where I was 3 years ago

September 2013 – I had had an incident in March where my right eye had gone squint over night. After lots of tests at Moorfield Eye Hospital, I was given the all clear and 2 weeks later the eye was back to normal. I let out a sigh of relief and put it out if my mind for fear that thinking about it might make my eye go squint again. But in September the double vision brought on by the squint eye crept back and as I sat at work not knowing which screen was the real one, I knew I had to get back to the hospital. Panic struck – once could be bad luck but twice was a pattern. 

I was told that I had suspected myasthenia gravis and a diagnosis had been sent to my old address in April. 6 months of knowing about the condition without treatment felt unfair and as the symptoms progressed over the coming months I got angry about it.

 As I’m sure many of you can relate to, hearing you have myasthenia gravis for the first time is upsetting and terrifying. What is it? What does it mean for me? Googling it didn’t make me feel any better – in fact I started to panic that life as I knew it was about to rapidly change. And it did.

Before I received my first appointment with my consultant and therefore received treatment, my vision was almost permanently double, I started to have difficulties with speech, I struggled swallowing and couldn’t really eat around people due to awkwardness of it all.

For a long time after September 2013,  I was in a difficult place both mentally and physically.

Between Sept 2013 and Sept 2016

I’ve had:

1 thymectomy- an operation to remove the thymus gland

2 specialist consultants 

3 jobs

4 different kinds of medication

The pleasure of attending 5 Myaware meetups

and…

I’ve written more than 365 blogs about living with the condition. 

September 2016

3 years on and I often forget I have MG. After seeing my new Edinburgh-based consultant, I’ve cut out 1 drug and, as I’m doing well, I should be gradually reducing another shortly.  I’m in drug induced remission according to the doctor and we’re testing whether that will hold as I take the drugs away…a bit like a game of Jenga.

Since my move back to Scotland, my quality of life is superb which in turn has helped my symptoms stabilise and reduce. My work-life balance is…balanced and the stress I feel in Edinburgh, compared to London, is minimal. I now get the occasional ptosis (eyelid droop) and I get exhausted still if I over exert/indulge myself, but that’s about it. Both of those things aren’t too hard to live with when I look back to the alternative experience 3 years ago.

On the over indulgence point, I’m currently taking a month off from alcohol mainly to rest my liver after a rather boozy summer. But I’m also keeping a close eye on how my energy levels are without alcohol in my life as I’m not averse to cutting it out for good.

I’ve felt strong enough recently to try a host of outdoors sports: kayaking, paddle boarding and Munro (Scottish mountains over 3,000ft) climbing (as pictured with my friend Steph). Each of these adventures were challenging but I managed without any MG-related difficulties. This is on top of 3 fitness sessions a week.

And most importantly, I’m writing almost every day. Whether anything will ever come of it or not, I’m really enjoying the discipline and the creative outlet that it gives me. Having the mental space and quiet to do that is something I couldn’t of dreamed of 3 years ago.

3 years is a long and short time 

While much has changed over the last 3 years I know that in another 3 years time, everything will likely be different again. I might have had a crisis (where your muscles stop working properly) but I might also have trekked to Everest base camp, I might have had to give up working full time or I might be running a team. That’s the problem with MG – it fluctuates so all I can do is try to keep myself strong, follow the doctors orders and, most importantly, listen to my body.

356/365 – Precious patient

Curled up on the hospital bed with the ECG pads still all over my stomach and chest, I woke up with a fright when the doctor finally came to speak to me. It was 7am on Saturday morning by now and I could tell by looking at him that he was jealous of my light sleep. But  that didn’t stop him from giving me a full check up: testing my reflexes, my pulse, blood pressure and other tests I don’t understand. He stopped short at blood tests – much to Elaine’s relief – but told me I’d done the right thing coming into hospital as I am a precious patient, due to the MG, and the symptoms I had were to be treated with caution.

I had been stupid on Friday and that’s how I ended up in hospital in the middle of the night. Straight after two days in a row of 1 and a half hour hot yoga classes, I mindlessly had a few glasses of bubbly. Not thinking about the strain my body had already been under, I pushed it too far with adding alcohol on top and woke up with palpitations at 3.30am. When they didn’t shift after about half an hour, I thought it would be best to call NHS 111 and they told me to get down to our nearest hospital’s A&E. Poor Elaine, who had been keeping me calm throughout, drove on the icy, dark roads and stayed with me. 

I know – I am an idiot and will not be doing it again. I’m annoyed at myself as I was feeling great for doing the yoga – as you can see in the picture above its helped me feel well and strong although 2 days in a row was my first mistake. 

But it was great to have a general emergency doctor recognise that the breathlessness I was having could have been related to the MG and a crisis. Once again I’m reminded that everything I do now must be more considerate of my health, but also that if/when something does happen, I need to tackle it head on and trust that I’ll be in safe hands. 

339/365 – Not merry Christmas Eve

As my family did our Christmas Eve rituals, I was thinking how I can hardly believe it’s been 365 days since last Christmas. Thankfully there is a world of difference between how I’m feeling today and last year. 

Then I was still recovering from my thymectomy, was on anti-biotics for a chest infection and, as a result of both and more, I was exhausted. As a result of that, I looked and felt terrible.

Today, I started with a run despite the howling rain. After our cinema trip to see Star Wars: The Force Awakens, we had a wet and windy stroll around the Christmas markets. I’ve added a picture below as, despite the chill we all got, it’s the place that captures the spirit of Christmas for me.  

To warm up we headed to our usual Christmas Eve spot, where I’m pictured above, for some dinner. Because I’m feeling better, it’s tempting to have a few drinks to celebrate but I’m determined to be in the best possible form tomorrow. So I’ll have a toast at the bells and then to bed early.

I hope you’ve had a strong and happy Christmas Eve and all the best for tomorrow. 

333/365 – Christmas dinner number one

I’m delighted to say with only a few days left until I’m off for the Christmas holidays, I’m feeling great. Better than I have in years during the Festive Season. That’s definitely thanks to Elaine for the break from the chaos last weekend. It’s also because I’ve stuck to my promise – of being selective with how I get in the spirit.

Tonight we’re having some friends around for a Christmas meal as we have done over the last few years. The way I’m feeling today reminds of how I felt on this exact occasion two years ago. I had been diagnosed with the condition only a few months before and my symptoms were really bad. I had only just started treatment and was feeling blue and extremely self conscious as  you’ll see from the picture below.  This is the only picture I allowed to be taken of me that night and you can tell through the finger monocle how bad my eye is.
Two years on, I’m feeling so much better in my own skin and comfortable with my choices. I’m going to continue taking it easy up to and hopefully through Christmas so that I can start 2016 on a high.

291/365 – Food, sleep and libations

Last week I was doing a pretty bad job of getting the basics right. I was eating on the hoof, and not very well at that, and I was sleeping badly. This winning combination left me struggling to find the energy to exercise. 

My time off so far has definitely made up for this. I’ve spent more time in bed sleeping than anywhere else and have been eating proper meals (including a lovely Sunday roast made by my friend Gemma last night). As a result, I woke up this morning with the sun shining ready to take on the world. 

As the title suggests there have been a few libations thrown into the mix – mostly at my cousin’s wedding on Saturday. But because I’m getting the other things right, today I’m feeling excited for a gym session and spa with mother dearest. 

Three more days of proper food, exercise and a couple of libations thrown in and I’ll be ready to take on anything.

239/365 – Good quality relaxation

What does it take to make you feel properly relaxed when going back to work after a Bank holiday weekend? I feel this Bank holiday weekend has been and gone before I’ve been able to appreciate it properly. 

It seemed quite busy, starting with salsa dancing Friday night away and ending with a cinema double bill yesterday. In between Friday and Monday night, Elaine and I also took a trip through to Essex to see some friends. There were many less hectic moments – like Saturday night – where we just relaxed. 

So what stopped me feeling on top of the world going back to work today? Aside from the crap weather, I’d say the amount of alcohol consumed and the lack of exercise. I had really wanted to go for a long cycle this weekend as my last chance before the 60 miler in less than a fortnight’s time. I also wanted to get out to run a 10km before my race next Sunday. While I managed to squeeze in a 7km run last night, it was tough after the booze and the lack of quality sleep. 

This week I’m hoping to keep it clean, healthy and have some good quality relaxation, before the race on Sunday.

236/365 – Choosing a run over a beer

Today I chose a run over a pint or two in the most boring decision of my adult life. My colleague is going on secondment for a while and the usual suspects headed to our local to wish him well. 

As I stood at the bar, I was full of conflict. As I watched my colleague taking the first sip of her pint, I imagine how good my first sip would taste after a full on day. At the same time, I could feel my trainers kicking me through my rucksack while shouting ‘Oi, no, it’s only 10 days until you have to run a 10km and you’ve not done a proper run in a few weeks’. My trainers won the fight – probably because they were kicking me. 

While I really didn’t feel like it, I’m glad I got some miles in tonight. It was only when I started running that I realise I had only had one mestinon all day – what often happens on busy ones – but my body held out fine over the 8km. After this weekend, it’s unlikely I’ll do another long run before the 10km so the fact that I did near the distance comfortably was reassuring. High on my healthy choice, I even went to the gym afterwards to do some boxing. I’ll need to make up for all this clean living over the Bank holiday weekend. 

197/365 – Setting the boundaries

At the wedding I wrote about in my last post, one of my friends told me about her recent diagnosis with an auto immune disease. She’s still in the very early stages of dealing with it and hasn’t sought support from people with the same condition yet. She was saying many things that went through my own head during the early days of MG and is currently battling many things I still struggle with. 

The main thing she was swithering with was going full throttle with dancing and drinking or holding back knowing that she would be in a better state over the following days. I too have this fight regularly – I’m pictured above on the day after the wedding in ‘recovery’ mode. It’s the constant battle for someone living with a condition like ours – the instant reward of having fun in the moment and dealing with the consequences later or being steadily well behaved. It’s what the spoon theory is all about. 

While people deal with this differently, being consistently well behaved is hard to adapt to for my generation as we’re told that it’s boring. So it’s a balance I haven’t mastered nor am I particularly keen to get to grips with. It takes strength of character to say no when you know yes is the fun answer. It’s the space where you might lose ‘friends’, where ‘relationships’ might break down and where you try to figure out what your new limits are. 

There are no easy answers and, as I say, it’s still something I still battle regularly. The main thing is being honest with those around you and expecting them to understand. If they don’t, it’s time to start questioning why they deserve a place in your life. More often than not, I find my loved ones gently challenge me if I’m being wreckless or destructive. 

193/365 – Breaking the booze ban

Well, I failed miserably with my booze ban. Normally I opt for moderation over all or nothing pledges, but a break was needed after a heavy weekend. It only took a few days for my body to feel restored and then I gave in to a post work drink. Since then, I’ve not really stopped giving in which wasn’t helped by the selection of open bottles of wine we returned home with.

This weekend I have a good friend from university’s wedding then the week after I’m off to the Scottish Highlands and Islands with Elaine for her birthday. It would be rude not to toast both of these important occasions, but after that it’s time to cut down.

I’ve not been feeling that great recently so I’m going to be proactive with cutting down my alcohol intake. It should help with better quality sleep and boost energy levels, plus it’ll give my hardest working organ a summer holiday.  

Preferring getting up and out in the fresh air than suffering from a hungover all day, I don’t tend to have booze fuelled late nights anymore. But I do enjoy a drink more evenings than I probably should. Planning ahead which nights I’m going to have a drink is a way to cut down and also make sure I’m giving my body several rest days rest inbetween. I’m hoping cutting down gives me the boost I need at the moment.