362/365 – First adventure of 2016

January has been sensible. A month of quiet, healthy weekends – lots of cinema, running and eating home-cooked, mostly nutritious, food. After finishing my last blog (on the lows of blogging for a year) Elaine and I decided to do something a bit different this weekend. 

We packed a bag and headed out towards the New Forest. By the time we arrived at our gorgeous hotel in a village outside Southampton, there was very little daylight left. We made the most of the facilities and headed to the gym and swimming pool to unwind after the busy drive. Lounging in the sauna, we promised that we would do this kind of getaway more often. 
Today, after another swim, spa and brunch, we set out for my first proper walk of 2016. 

After a failed walk in the New Forest during our first break together, the rain was not going to put us off today. Wrapped up and excited, we set off through a campsite overrun with wild horses and onto a muddy sand track. The first section of woodland seemed abandoned except from horses lurking rather magically in the trees. When we came to the first Heather plain, it was obvious why as the path turned into a series of islands to jump between in the bog. As we forgot the canoe, there was a lot of sinking into muddy puddles. 

Once we’d navigated the first stretch of the route, which was like the bogs of Mordor with dead people lurking in the puddles, we were able to properly stretch the legs. Then the dog walkers appeared out of nowhere and our route passed over undulating hills, gnarled trees and lots more Heather. We became rather nimble at island hopping and experts at spotting a solid piece of ground…or so I thought until I ended up calf deep in a puddle. 

We took a few wrong turns and ended up jumping across burns to get back to the car, but I heard a quote recently that I love:

An adventure doesn’t start until something goes wrong.

After a couple of falls and slips, we were muddy, wet and rosy cheeked from the slog of the route. But I’ll be taking the peace of wide open spaces and nature’s soundtrack back to London with me.

361/365 – The lows of blogging for a year

After publishing a post about the highs of blogging for a year, here is the other side of the story.

As I’ve already said its been a fantastic year and I would recommend it – particularly to those who want to understand their condition better. But keep the following in mind:

• The time commitment

On good days, I could write a blog in under 30 minutes during my commute. But on other days it would eat into my lunch time and my evening. Not easy when you’re working hard so it’s important to have a clear purpose. This blog has taken me an hour and a half to write in bed on a Saturday morning – all the while, Elaine has been reading beside me. I’ve missed reading in 2015. 

Due to blogging, in 2015 I often had to lock myself away to finish a blog. My friends and Elaine joked on the Camino De Santiago that I was going to my blog studio whenever I went to the toilet.  It was often true – so that I wasn’t anti-socially writing on my phone I would slip off to write today’s post.

Saying this, at the end of the year I have a ‘finished product’ (almost) and a learning tool – so worth the sacrifice. This TED talk sums up much more eloquently than I could why the time spent capturing the ‘many tiny, beautiful, funny, tragic moments in your life’ is worthwhile.

• Fear of running out of things to say

This is an obvious one and something I had thought about a great deal before beginning. There were moments during the year when I felt like I had said all that could possibly be said about MG – it would stress me out a little. But it never lasted too long thanks to the active community and the condition having an impact on many areas of life.

I found it helpful to keep a list of ideas close to stop thoughts as butterflies flying off – now that I’m wrapping up there is still a list with left over ideas.

• Taking a step back and observing

Following on from my ‘blogging on the bog’, when writing regularly I’ve found I have to take a step back and try to observe. Similar to feelings experienced during my journalism days, this didn’t always leave me feeling comfortable, mainly when I could tell (or was told) that others weren’t pleased to be written about.

Thankfully the MG community, for the most part, has been really happy with the spotlight due to the potential to raise awareness.

• Being ‘the expert’

I’ve only had MG for a couple of years, I don’t have a medical background, I’m lucky that my health has been relatively good and I’m not always the most respectful of my body. I’m no expert or role model when it comes to what’s right in terms of MG treatment or lifestyle. I’m learning from one day to the next what works and what doesn’t for living with this rare condition. But by writing this blog, I worry that I’m meant to be ‘an expert’ and have often been asked questions which confirm this fear. I even added a disclaimer on the blog.

Thankfully most people who have engaged with the blog have seemed to understand that it’s about my journey and they should seek medical advice before replicating anything I have tried.

• Use of my images

One of the guys in the Myaware Young Generation private messaged me a while back about a website I had never heard of using one of my images. It is very misleading and it reads like I have written the page, which makes me feel really uncomfortable. I’ve now asked for Myaware’s support to get the image removed, as I’m wearing one of the charity’s t-shirts.

360/365 – Stepping down the immunosuppressants

After managing to successfully step down my steroids last year to a very small daily dose, last weekend I decided it was time to do the same for immunosuppressants. It’s a bigger deal with aziathioprine as my tablets come in 50mgs, so taking one tablet away means cutting out a third of my dose. 

For those of you who don’t know, aziathioprine, originally used for cancer, works by reducing the profiency of the immune system (the T and B cells of the immune system apparently). Because of this, taking it increases the risk of picking up infections and viruses as your body’s defence is weakened.

I’ve been swithering about stepping down for a while due to concerns about the long term risks. Not to mention the fact that I want to visit South East Asia this year and am concerned about having a suppressed immune system in a new climate. Ideally by the time I go, I would like to be on a low dose if not off it completely. One step at a time though as it has helped keep me well and healthy of late.

I’ve been waiting until I felt strong enough to do it. Weighing myself last week gave me the final push as the dose I was on was related to my weight around this time last year. As I’ve lost a few kilos since then and have been feeling stable for months now, the time is nigh.

The first week has had its ups and downs – I’ve had an upset stomach, felt run down (due to picking up a cold passing around the office) and I’ve taken the exercise regime down a few notches to give my body a break. My sleep started out not great, but is now back to normal, and I felt quite sick in the first few days of the reduced dose.

Having been consistently fine since early January, my right eyelid started drooping again. Whenever I’ve changed medication doses this has happened, but I wasn’t expecting it with aziathioprine as it normally takes time for anything to happen with this drug. 

It’s almost a week since stepping down and I’m feeling strong again. My eye’s back to normal and tonight I’ve completed a tough workout. While I’ll be paying close attention over the next while to how my body is behaving, I’m hoping that the worst is over.

359/365 – ‘Understanding’ Myasthenia Gravis

For most non-medics, understanding the complicated information given during a diagnosis like Myasthenia Gravis means being abandoned in an unfamiliar world. If you’re lucky, you’re given brochures or steered towards helpful online guides by medical staff. But like anything new, to begin with it’s completely overwhelming. I remember looking again and again at information on MG during those first few weeks and months desperate to understand. I couldn’t speak the language of this new world.

Given time to acclimatise, you start to learn the key terms (many of which are here in my A-Z) and a way of making sense of it. To this day the way I describe it is similar to how I have from early on: ‘my immune system has gone rogue and is attacking itself. It particularly likes the weak spot between muscles and nerves’.

If you’re anything like me, you dont feel like you fully understand the condition and you’re not sure you want to. But what you do try to understand is what MG means to, and for, you. Because objective knowledge about the condition makes it incredibly hard to keep positive through the lows – whereas knowing your own version allows hope to remain. Everyone is different but my advice for anyone desperate to understand MG would be try to get to know it on a personal level.

358/365 – Trial for myasthenia vaccine launches

At the end of December I received a press release from Curavac. The company representative said he had come across my blog on the vaccine and wanted to provide an update on its progress.

The Myasterix consortium launched the first phase of the clinical trial at the end of December. The firm said it ‘study will evaluate the safety, immunogenicity, and also explore the efficacy of a therapeutic vaccine candidate (coded CV-MG01) with designated orphan drug status in the USA and Europe by the FDA and the EMA. CV-MG01 comprises two synthetic complementary peptides conjugated to a carrier protein’.

It will be randomised, double-blind, placebo-controlled and includes a dose escalation. The study will be carried out on 32 MG patients and comprises 2 parts. These are: an active part that lasts 5 months and an observational part that lasts 2 years to assess long-term treatment effects.

Dr. Stephane Huberty, Managing director of CuraVac, says: “We are delighted we can now start this long-awaited clinical trial for our MG therapeutic vaccine. We hope that this trial will go beyond showing that we can significantly improve the life of MG patients and that it will open the door for a new class of therapies applicable to other autoimmune diseases.”

More information on the clinical trial can be found on http://www.clinicaltrials.gov website with the reference number NCT02609022 or by searching the keywords “Myasterix” or “CuraVac”.

357/365 – Timeline of myasthenia gravis

I’ve finally found time to put the finishing touches on this timeline of myasthenia.
Here it is:

//cdn.knightlab.com/libs/timeline3/latest/embed/index.html?source=1_qoM6YpgltEQBHBJDvMFJ60cW_OvHfYP_HkN9Sa53AE&font=Default&lang=en&initial_zoom=2&height=650

The best bit is I want this to be owned by the myasthenia community so anyone with the link below can edit the spreadsheet that drives this timeline. If you do decide that you want to contribute, please be careful not to change any headings.

To edit, go to this link and you should be able to make any changes. If you want to add information you can go to insert in the toolbar. If you want to amend, please feel free to.

 

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. 

355/365 – Battling through January blues

 The January/winter/only spotting daylight through the window blues are not easy to shake and many people I’ve spoken to of late feel they want to hibernate until spring comes. But I find the only way to try to make it better is being honest with yourself about the reasons behind the blue. Then it goes from a general feeling of darkness to individual issues that I can begin to tackle.

The things that are myasthenia related that are getting me down currently are few at present:

• The wait to see my consultant to lower my dose of aziathioprine: it’s already felt like forever following a missed appointment and I still need to wait until April. I’ve been on the highest dose my body can take for over a year now and I’m keen to find out how my body copes on a reduced dose. At the moment I’m feeling very strong and it feels like the time is right.
• This year I want to push myself to travel a bit further than before, but due to the MG and specifically the medication there are restrictions. While I’m incredibly lucky that I can still see different parts of the world, sometimes it can be a little frustrating that currently sections of the world are off limits. More about this soon. 
• The constant risk of infection at this time of year: thankfully I’ve not had an infection for a few months but whenever I notice someone ill close by, it’s a waiting game. 
• Finally, the constant sniffles. Nuff’ said.

With all of these, there isn’t really anything that can be changed immediately so it’s a case of trying to change perspective. None of these are big and I’m very lucky to be feeling healthy and strong at the start of this year. That’s what I need to focus on to burst the MG-related January blues.

354/365 – The highs of blogging for a year

Me again – I know it’s starting to feel like I’m dragging out the last few posts of my year of blogging. That’s because I am. It’s now a year + a week but that’s ok. There’s a few reasons why and most of these are positive reasons. 

Reflecting on the impending 365th post, I wanted to capture the highs that have kept me writing. 

Highs:

1. getting to know people with MG around the world better – as a people person, the most valuable takeaway from everything I do is normally related to people. I’ve met many new people, both online and in real life, this year through this blog and wider myasthenia networks. Every time the comment alert sounded on my phone during the year, I was thrilled. 

• understanding my own MG better – charting how the myasthenia has made me feel over the last year has helped me better understand what affects the condition. Near the end now and I’ve never felt more comfortable with my MG or stronger.

• allowing myself to be vulnerable – as I’ve stated many times in this blog, allowing myself to be vulnerable does not come naturally (I’m Scottish, of course it doesn’t). But this blog has helped me open up not just to my loved ones, but also work colleagues, the MG community and complete strangers. I’ve always believe in asking what’s the worst that can happen – in this case all I’ve had is a lot of love and support from readers.

• achieving something  – the idea of writing a blog per day for a year was very ambitious. However, I read recently that even if you don’t succeed with big goals like this, in trying to, you’ve done a lot more than you would normally. I’ll only be setting big goals in future.

• having a full year (+) documented – it’s the modern equivalent of a year book and once I’ve stopped writing I can go back over it to see what else I can learn.

While it’s not an easy thing to commit to, I would recommend it and support anyone else who thought they might like to reap some of the rewards I’ve discussed above. Will anyone take on the 2016 #365daysofmyasthenia mantle? 

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.