Here I go again: steroid step down

I’ve been back from travelling for around a month now and in that time I have:

• visited Ireland to see the in-laws and explore a part of the country I had never seen before, Galway
• found and moved into a new flat
• set up new flat to make it home
• started a new job
• started a new diet (more on this in a follow up post)

However the most important thing I have done since being back was visit my doctor to get a new prescription and get bloods taken. The results seem to be normal from the information I can get over the phone.

I also let her know that I planned to step down my daily dose of steroids over the coming months and being conscientious, she booked me in for monthly blood tests. This is the first time I’ve had these ordered by a doctor since London and, although it takes time out of the working week, it will be good to track my body’s reaction to the increased steroids over the past three months and how it responds as I step down. Data is everything these days, after all.

Already started

This month, I have got myself down from 10mgs a day to 7mgs and I plan to be down to 5mgs by the start of June. From there, experience tells me it will be a more gradual process. I know the toll this will take on me emotionally from previous experience – you can read about my last step down from the steroids in this blog’s medication archive.

However, to be reliant on as few drugs as possible while not compromising on quality of life has always been my goal for coping with my MG. In this respect, I must treat this step down process as a new test for my body and watch carefully to see how it responds.

A bad week in Uruguay

After five days in breathtaking Rio De Janiero and a couple of days on both the Brazilian and Argentinian sides of the Igazu Falls, we had a night in Buenos Aires before heading to Uruguay for carnival.

To get to Montevideo, Uruguay’s capital, we had to take an overnight bus from Puerta Igazu to Buenos Aires and then an early morning boat to Montevideo the next day. It was exhausting and I think the combination of the extreme heat, the lack of sleep and the different climates led to what happened next.

On day 1 in Montevideo, I had the start of double vision and felt pretty unwell. This developed rapidly over the next few days to the worst double vision I’ve had in years, a nasty headache from the swirling and really bad fatigue. Elaine said I was getting less and less like myself each day and the hours where I was fit to do anything kept getting shorter.

Still, we tried to enjoy the cool carnival nights in Montevideo.

This photo above is on our first night in Montevideo. It was the night of the main parade and here we’re climbing scaffolding to get a better view.

After five nights in Montevideo, we moved on to Colonia Del Sacramento, a former colonial town across the river Del Plata from Buenos Aires. Luckily, there is not much to do in Colonia, so I was able to relax there as I didn’t have much energy for anything else.

After a week of getting worse each day, although I had doubled my steroids, we caught the boat back to Buenos Aires a day earlier than planned to get some help.

I’ve now had medical care in a private facility in Argentina’s capital (more about that in another blog soon) and after upping my steroids and pyridostigmine I am feeling much better. However, this Uruguayan episode served to remind me that the MG is more of a sleeping beast than a distant memory and that I can’t take a day of being well for granted.

The photo for this blog is at the lowest point of my last episode where I wanted to hide away from the world. Thankfully in that moment, I had Elaine to keep my spirits up and pull me out of my self pity. So it has served to remind me how lucky I am to have her by my side too.

Despite this bad turn, the reason we are here – to experience other countries and cultures – is what kept me going. Here are a few of the amazing things we experienced in Montevideo and Colonia Del Sacramento. I hope the beauty of the country and its people is what I remember when I think back on our time there.

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 eye tests

In the three years that I’ve had myasthenia I’ve been sure that my eyesight has been getting worse. When looking into the (not too far) distance I often mistake bags for children, dogs for bags and children for dogs. Yet in that time I’ve never gone for an eye test…why you ask, well I’ve been waiting for my eyes to be ‘back to normal’.

I didn’t see the point of getting them tested until they were as good as they could and would be again. Since the early days of my MG my left eye has been at a different kilter from the right so when I look up I get double vision. I hoped by taking the medication that over time this would correct itself. But it hasn’t and after 3 years I finally bit the bullet and went to get an eye test. 

The test itself was pretty tough – my vision doubled, blurred and I could feel ptosis come on as my eyes during what felt like hours of tests. I left with a lighter wallet and a very droopy right eye. 

The result of tests shocked me a little – anything more than 60cms away from me will start to blur. The optician asked how I had been functioning? In blurs and fuzzy patterns it seems now, any time I take my new glasses off.

What made me finally bite the bullet was the view from my living room. Although I knew it was beautiful, I longed to see the things Elaine described across the Forth in Fife – the distant mountains, the boats on the horizon and the sun setting – as more than just blurs. 

If my eyes do align again it might be that I’ll need a different pair of glasses although I asked that the optician did not put a prism in the glass so hopefully not. I did this because I had one I my previous pair of glasses when the first symptoms came on (which I lost before I was diagnosed). Rather than making things clearer, it made the world feel at a distance and always tilting which as you can imagine made me feel queasy. 

344/365 – Has Aziathioprine worked for me?

On Christmas Day I was having a chat with my cousin who is also on immunosuppressants for a different reason – excema. As she has moved onto a different type, we began to discuss our experiences of aziathioprine. This led us to the ultimate question – has it treated the MG successfully?

Yeah I think so. I’ve been on a very low dose (2mgs) of steroids for months now and take little mestinon so it is my main form of treatment. I do have fatigue days occasionally and readers will know that my eye ptosis (droopiness) fluctuates, but my MG feels stable and relatively predictable. 

Influence of the thymectomy?

I do wonder how much the stability has to do with the thymectomy – I guess there is rarely one answer for conditions like this stabilising. Medical staff say it can take years for the full affect of the thymectomy to be realised and things have definitely been more stable after my recovery. 

Stepping down

As I’ve written about previously, I’m keen to lower the dose of aziathioprine to see how my body reacts. I think this will be when I really feel how much the drug has helped make the condition manageable. I wonder if the reduction will impact me gradually as it takes a long time to kick in.

No response to aziathioprine 

One of the research projects Myaware is currently funding is looking at early signifiers of people who don’t respond to aziathioprine. As the drug can take a long time to make an impact, if any standard early signifiers can be found it will be helpful as clinicians will know to try another form of treatment. 

271/365 – Exhausted but happy

As my three day weekend draws to a close, I’m struggling to keep my eyes open to write this. Elaine’s parents have been visiting and it’s been all go go go since Thursday evening. We went to see Diana Krall at the Royal Albert Hall followed by the Late Late Show at Ronnie Scott’s, Friday was a full day and evening exploring Oxford, and Saturday we walked all over North London taking in the sights (around 8 miles worth of walking). Today, I was up early for a Childline shift before a trip through to see my friend Sarah in Southend. 

As I write this on the train home from Southend, my body is craving the fresh sheets on my bed and 12 hours of sleep too deep for dreams. It’s been one of those necessarily busy ones that I really enjoy, how could I not with all I’ve been up to. To compensate, I’ll try to have a relaxed week to let my body catch up on rest filled with yoga, massages, healthy food and early nights. Hopefully this gets me looking and feeling a little less shattered. But first, sleep time.

269/365 – Using digital tools to tell the myasthenia story

Following my last post about a crowd sourced map of people with myasthenia, it got me thinking about other digital tools we can use to tell the myasthenia story.

As my job is in the digital sector, I’m always investigating different tools and I’ve recently been trying Flipagram. 

So in this blog I’m passing you over to this Flipagram I’ve put together of some of the highlights of my 2015 year of blogging. 

The idea of taking photos every day was to show the fluctuations in my condition and this tool is a great way to give a quick overview.

I’ve used Twitter, Instagram, Vine and Facebook before this to get the message out about MG and this blog. I also want to use Ted lessons to create an animation about Myasthenia. But, as part of my raising awareness agenda, I’m going to try out a few other tools like Flipagram to tell MG stories in a more creative way.

Let me know if you’ve got any ideas for other tools to try. 

263/365 – Early mornings and late nights

After a week of early starts for a new work task and late nights due to evening activities, I was feeling exhausted last night. It reminded me of how I regularly felt last year when I had to be in work by 8.30am at the latest and often wouldn’t leave until after 7pm. Those kind of hours start to wear you down and after only a couple of days this week of a similar pattern my eye has been drooping more than it had been recently. 

Today, I’m delighted that I’m working for the Civil Service as on days where I start to feel exhausted and my condition flares, flexible working comes in handy. The body is an amazing machine though – I’ve started later today, allowing myself a full eight hours sleep, and already there is a significant difference both in my energy levels and my eye ptosis. 

With a relaxed weekend planned, I’m hoping to catch up on all the precious sleep I’ve missed this week. Happy Friday everyone!

255/365 – Bullying and myasthenia

After conversations at different Myaware events, I have endless admiration for those who are diagnosed with myasthenia (or congenital MG) in infancy, childhood, during teenage years and as a young adult. As a mid twenty, being diagnosed with MG was bad but I had a relatively firm sense of self by then. Most days, I could brush off unhelpful/nasty comments, stares and what I read to be looks of revulsion. Now, I’m surprised when I notice one of these reactions. However, I dread to think what it would have been like for me at a younger, more insecure, age.

At one of the meetings, I was chatting to someone who has had the condition since she was tiny. She shared stories not of childhood, but of being away from home for the first time at university. Sounding similar to anyone’s worst nightmare of boarding school, her dorm mates ridiculed her relentlessly and always made her feel apart from the group. She was tormented and made to feel inadequate – from the way she spoke about it the experience haunts her still. 

The rejection of who you are by others is sadly one of life’s shared experiences and both kids and adults can be cruel in this regard. As an adult you learn to shut down those who are malicious, but childhood experiences stay with you. Even as you try to understand where these comments come from and acknowledge that so often it’s about the other person and not you, it can be difficult to do this with wounds embedded from a young age.

If you have a young one with MG/CMG, it’s important to remember how hard it is to be ‘different’ as a child . Speak to them about their feelings around this and, if they won’t speak to you, encourage them to speak to Childline or an equivalent. 

It’s also important to praise their strength of character for coping at such a young age and generally just lavish praise on them. They definitely deserve it. More than anything, try to recognise their strengths and tell them it’ll make them more able to cope with the difficult times in life as an adult.

As an adult, the words and feelings of being bullied about your MG/CMG may stay with you but it’s important to be kind to yourself. What would you say to a child going through the same things you did? If that is different from what you would say to a younger you, you’re being too hard on yourself. Make peace with the past by looking at it objectively – once again it’s more likely that the bullying was about the other person/people and not about you. 

241/365 – Checklist for when you first get diagnosed with myasthenia gravis

It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.   

Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on): 

• Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
• Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process. 
• Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow. 
• Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
• Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
• If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
• Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive. 
• Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
• Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
• Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.

That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.