Coping with myasthenia gravis blog on eCare Diary

Following on from the radio interview I did with eCare Diary Radio, they asked for a follow up blog.

You can read the blog on the eCare Diary website: https://www.ecarediary.com/Blog2874/Coping-with-Myasthenia-Gravis.aspx

In it, I continue the theme of coping with myasthenia gravis and broke my recommendations down into three key themes:

1. Stop blaming yourself
2. Let someone in
3. Connect with others who know what you’re going through

As I get quite a few people emailing about this blog helping them to cope with the condition, I thought the blog might provide some further detail on these three important topics.

Because the show and blog are aimed at loved ones as well as people with conditions, it might have some helpful tips for those close to you.

Please let me know if there are any other aspects of coping with myasthenia that you’d like me to write about.

You can read the blog on the eCare Diary website: https://www.ecarediary.com/Blog2874/Coping-with-Myasthenia-Gravis.aspx

Preparation: Enough medication for travels

When I first had the diagnosis of Myasthenia Gravis four years ago this month, one of my first thoughts was I’m not going to be able to do any extended travelling.

Before I left home for university, one of my bedroom walls was covered with magazine cuttings of places I wanted to visit. The more exotic the place, the more likely it was to feature in my shrine. And while I’ve managed to visit many wonderful places over the years, there was one kind of trip I pined for then and haven’t managed to do yet. The gap year – a year away from the stresses of everyday life to re-evaluate what I want from life.

After the MG diagnosis in 2013 and starting medication to treat it, I realised that taking off to the explore for a year was very unlikely. This was mainly because the longest prescription I could get at the time was a month. Even a 10 day holiday proved problematic and needed careful planning. My travel dreams were in tatters, but my focus shifted to getting well.

As I reduced my meds and my condition stabilised, I was told I would be able to increase my prescription length to 3 months for all but aziathioprine – the drug that suppressed my immune system. While 3 months wasn’t a year, it was a lengthy chunk of time that gave a lifeline to my travel dreams. If only I could get off the aziathioprine.

And that’s what I did – slowly, slowly, with several set backs and with the support of a very encouraging consultant. Once that finally happened at the end of 2016, Elaine and I were already planning our wedding. Honeymoon destinations had come up with the discussion of some travelling at last but it was going to cost enough to get married.

Then one day we just decided, let’s do it. Elaine had wanted to travel too, and with her own health issues calming down in harmony with my own, the timing seemed perfect. As did the shorter period of travel – 3 months – so that I could come home to get another prescription and we could celebrate Christmas at home (not to mention my mum’s 70th birthday).

So here we are – 3 days into an (almost) 3 month trip to Nepal and south east Asia. We’ve already seen so much and I’m so very glad I didn’t hold off for the indefinite one year break. I have enough meds to last the time and a few extra just in case. I also brought a bottle of pyridostigmine with me in case my symptoms flare in the exotic climate. I can only hope nothing happens to them during the trip.

MG revelations in 2016

If 2015 was the year of blogging about my myasthenia to try to figure out if there were any patterns and what my body responds to, what was the theme for 2016? I’d say trying to forget that my MG exists. 

After writing a blog every day for a year, I was fed up with MG being the third wheel at dinner and Elaine was definitely fed up with competing for my attention. So in 2016 I took some space. 

How can you take space from a condition that impacts many things in your life? I’ve found that with the less stressful life I chose to live in Edinburgh I rarely felt symptomatic this year. And when I did, I’ve learned that listening to my body – normally that means rest – is the quickest way to feeling normal again. So it’s been less of a big deal. 

I also took a step back from MG charity Myaware due to the less active community in Scotland. So other than the morning medicine ritual and the monthly blood tests, I found myself rarely thinking about it.

While I know that means I had a very blessed 2016 and there will be other years when MG plays a leading role, having it as a bit part meant I’ve been able to focus on other things this year. Writing creatively, climbing mountains, getting outdoors as often as possible, reading like a fiend…

  
Looking forward

If 2016 was quiet on the MG front, what does 2017 look like? It will all depend on how the next 3 months go. Let me explain. 

I had been feeling less symptomatic for a while when I had my first visit to my new Scottish consultant in late summer. As my aim has always been to get off the immunosuppressants, I decided that now was a good time to test how my body would respond. To my delight (and shock after previous experiences), the new guy was more than happy to oblige my request. So at the start of December I was finally able to start reducing the aziathioprine by 25mg each month with the aim of being completely off them within 3 months.

Each time I reduce my dose, I’m sluggish and exhausted for the first week as my body adjusts but then it goes back to normal. I’ve found that pattern repeated with all reductions and am now half way to freedom.

I’ll probably be blogging a bit more this year – firstly about coming completely off the immunosuppressants and then about travel and MG. That’s because after fighting to get healthy, I’ve got some big adventures planned for this year…and I have no idea how my body will react. Stay tuned for more details. 

Guest post 2: Myasthenia and the challenges of raising a child

Guest post by Lucy Whitaker

In her last post Lucy wrote about being pregnant, giving birth and raising her son Jacob. Now she talks about

Our life

 We have quiet time with snuggles, blankets, hot chocolate and Disney movies and although I try to throw a new one in the mix from time to time, Frozen, Minions and Toy Story take the centre stage. 

We read stories together, taking it in turns as when my voice tends to go he definitely makes more sense reading.

 We have picnics, which he cooks for me in his kitchen, and we take the food anywhere in the house or outside when we get a dry spell. 

He likes to do his fixing with his workbench, and he uses the help of Woody, Buzz or Jesse at times…even Lemur lands a hand. 

Mummy is sick 

He knows mummy is poorly, as I have a pic line in so that’s an obvious clue and he can see where mummy gets her magic medicine, like his calpol.

 He has seen me in hospital and he knows mummy is okay as all the nursing staff are great with him, so he feels comfortable. So comfortable that he loves running around and recently found the bed control! 

He has not had many disruptions to his routine whilst I’m in hospital apart from me not being there and we’ve worked it so that I’m just gone one night every two weeks. 

The guilt and heartache does occasionally creep up on me. No mother wants their child to have to go through tough times, let alone having to deal with an ill parent who can be good one day and not so good the next. 

My family have all said that he’s known even from a babe in arms that mummy has restrictions, as he wasn’t a demanding baby and even now he’s not so much. I guess I’m lucky in that respect and just have to remember how precious he is so I’m not torturing myself or comparing myself to other mothers. 

Hard choices

It’s the time that I spend with him that is so precious and important to us. I felt like I had no control when my MG has been so aggressive. 

Having to make the decision of nursery was one of the hardest things for me as I didn’t want to be without him – I wanted to hold him all the time as I couldn’t do much else and all I wanted him to know was that I was always there. 

It almost felt like I’d failed as a parent; I kept torturing myself by thinking I was letting someone else look after my child. 

Ok, in a way I was but that didn’t and doesnt make me any less of a mother. I guess because I wasn’t back at work I felt like I didn’t have an excuse to use. Although it’s not an excuse, it’s my illness…one that at the moment is putting so many hurdles in the way of everyday living and is creating a learning curve to find out what’s best for us. 

I am so grateful for his childcare as its where he is able to make friends, get messy, learn, sing and dance and generally be able to play all day. What more could a child want to be doing everyday?

 I made the decision to put him in for a few days so that we both benefitted from it – him in his growth and development and me in my resting so I can have those precious moments of bath time and read him his bedtime story. 

We have play dates, just not every week due to the childcare or times when mummy may be having a tough day. So sometimes we don’t get asked again because we’ve rescheduled a fair few times. 

Looking back though, even though I had no choice due to being restricted, I couldn’t be selfish and hold him back. I look at him now and how he interacts and plays with his cousins and other children and I just beam with pride, as I know it was the best decision for us. 

Read Lucy’s earlier blog on finding out she was pregnant.

Moving home: 3 months on

It’s been nearly 3 months since I moved back to Edinburgh and I’ve been taking stock recently. It felt like a good time to share some of the things I’ve been thinking about.

Home is where the heart is

When I left Edinburgh at 17, I was desperate to see a bit more of the world than my school, Cockburn street and my favourite nightspots. 

I wanted to be far from home and I ended up first in Scotland’s north east followed by the UK’s south east. I got to experience life in two very different cities to Edinburgh and see much of the surrounding areas. Not to mention travel the country, and other countries, extensively. Most importantly I met some truly wonderful people wherever I went. 

But the longer I stayed away from home, the stronger the umbilical cord tightened. It got to the stage last year where leaving was physically and emotionally draining and I would dread coming home because of the way I’d feel when leaving. 

Part of that is my family and best friends being rooted here – no matter where they go in the world, they’re tethered here. And I wanted to be tethered with them.

Another part of that is no matter where I’ve spent time, I’ve realised that Edinburgh and Scotland are pretty hard to beat. During holidays, I got to see much of Europe, America and North Africa. As much as I can appreciate the differences of all the countries I’ve experienced, they made me realise that Edinburgh, and Scotland, is where I long for most. The quality of life, the people, the culture (high and low) and the natural beauty.

What took me so long?

I wanted the circumstances for moving home to be right – mainly I knew I needed a job I’d enjoy and if possible have Elaine by my side. It took a little while, but I’ve been lucky that it’s turned out beautifully. 

Elaine moved to Edinburgh about a month after me and we moved into a gorgeous flat by the sea around a month ago. Somewhere we could only have dreamed of living in London (not just because the nearest sea is an hour away).

Making Edinburgh fit for the new me

While Edinburgh has always been home, I knew I’d need to put some work into making the city work for me now. Here are the key things I’m trying not to do:

1. doing everything NOW 

Trying to fit it all in in one day – if we hurry we can see a show, and a film, go to the gym and that new restaurant. I’d done this in Aberdeen and London – spent my life rushing from one cool event to the next one. It left me burnt out. Worse, it left me unable to appreciate even the really exciting things happening in my life. I often wonder if the speed I was living at in London brought my myasthenia on earlier.

I’ve actually learned my lesson and this time I’ve eased myself in. That has meant being very selective about how much I try to fit into a week and what I’m spending my time doing. The beauty of this is the slow unravelling of this new-old town. I plan to be here for a long time so why rush the reacquaintance? 

2. Relying on existing friendships

While it would be easy to rely on my existing friendships, to make Edinburgh feel like a new experience it felt important to try to meet some new people. 

Whilst making new friends takes time, I’ve struck gold with some very sociable (and fun) work mates. I’ve also joined a couple of writing groups where there are lots of inspiring, friendly and interesting people I’m enjoying getting to know. 

People of Edinburgh – come at me!

3. Over excercising 

In spite of the MG, I’m a bit of an exercise junkie. Or perhaps I should say I was. As part of the slowing down that came with not doing everything NOW, I’ve found that my desire to exercise vigorously most days has diminished. Like I’ve repaced myself from Cheetah to Shetland Pony.

I’ve tried as much as I can to walk wherever I go and  I’m loving discovering this city’s secrets on foot. Don’t get me wrong I’m still doing a bit of working out in the gym and the occasional run to keep myself strong. But unexpectedly for me, I’m feeling better after reducing the frequency and intensity. 

…and how about the MG?

Well hand on heart I’ve had 95% good days since the move. When I first arrived, my ptosis wasn’t great for the first week or two due to the stress of the move. But since then it’s been consistently good and I’ve felt like I have much more energy. Don’t get me wrong – I’m still a spoonie with much more drive first thing in the morning than last thing at night. And I still suffer if I don’t get 7-8 hours sleep. But I feel like the MG is under control here in a way that I never did in London. 

I’m still waiting to get a consultant lined up in Edinburgh – a little frustrating. But when it does happen, hopefully I’ll be able to reduce my drugs down a bit further. 

For now, I’m genuinely content and that makes me sure that I made the right choice.

Guest post: Myasthenia and being a mum

Guest post by Lucy Whitaker

On the 2nd October 2013, I found myself giving birth..

The unknown of being pregnant

I remember the day I took the pregnancy test, 9th February 2012, like it was yesterday. It was positive before I’d even set it down to wait! How can I be pregnant? How is this possible? Yes, we don’t need the birds and the bees talk, obviously I wasn’t just visited by the stork. I wasn’t sure I could be? How will I cope? What sort of mum will I be? Can I do this? Am I am ready? What will my MG do – will it behave? Will I make my baby ill? These were just a few of the questions that raced through my head.

Past the panic

My pregnancy saw me blossom; my MG behaved and I was stable on the drugs I had been on without any intervention from my doctor. My medication was the same and I was told nothing would harm the baby. I was safe and so was my baby. As you can imagine, that made me very happy.

I decided not to find out the sex of my baby. I thought that if I was to be given such a miracle I didn’t want to know. This just added to the excitement.

Baby time

1.37am saw the arrival of Jacob William Samuel – the whole 8lb6oz of him. It was all done naturally with help from the midwife and doctors  He was a healthy, hungry boy.

I have never felt exhaustion like I did during those next few hours, days and months. Not only did I have a new born who’s normal routine was eating, sleeping and screaming, but I also had to contend with the worst flare up of my MG in 16 years. My life turned upside in a matter of weeks.

The storm after the calm

I couldn’t pick Jacob up, whether to change his nappy or to get him out of his Moses basket to comfort him. Feeding became a challenge in itself so I resorted to the bottle, which helped to relieve some pressure as my family were all able to help out.

I still felt like me but my body didn’t; I didn’t have any strength…it was wiped out completely. I constantly panicked and wondered how was I going to cope with Jacob if I couldn’t even cope with myself.

Parental support

Mum and Dad came to our rescue, we moved back in. Even though I had their constant support and love, my MG flare lingered on. It was getting on my nerves as I felt completely useless. What sort of mother was I when I couldn’t take him to every antenatal class? Swimming group? Meet up with all the NCTmums and babies? Return to work after 6 months? Take him for a stroll?

I kept thinking that all that I dreamt of when I was a little girl was being taken away from me. For that, I hated my MG, despised it. Guilt constantly filled my thoughts – I felt that Jacob would be missing out on so much especially if I was so restricted.

 I wanted nothing more than to be able to pop him in his car seat and drive to his friends, show him off at work, have play dates, take him to the lakes to feed the ducks…but MG made sure that didn’t take place.

Despite my restrictions I’m thankful for always being there with Jacob – we’ve both had the comfort of knowing that his mummy is always there. He could see me, feel me and talk to me. I also felt that my MG took away a lot from me, so although Jacob has constant love and affection, I feel like I missed out on things.

Looking forward

So right now my MG is being controlled by fortnightly visits to Oxford for 2 days of IVIG treatment. I also take a concoction of other drugs daily, from steroids to cyclosporin.

Being a new mother is one of the most rewarding and challenging times any one can go through, let alone having MG to deal with and its constant little reminders. Jacob is only 2 and a half years old and it’s nothing like I could ever have imagined. There are times where I’m in awe of his kindness, even if it might be making sure he has enough sweets so he can give one to his Granny and Grandpa, to giving the cat his taggy blanket and letting him know “he’ll be alright”. He adds to my strength on a daily basis; I am definitely fighting my body, although I’m hoping sometime soon we may make peace again.

 

Guest post: the unspoken contract

Elaine is the partner of the author of this blog. You can read Elaine’s other guest posts on the tagged page.

“Ideally couples should have three lives. One for him, one for her and one for them together”

I have always been a big believer that relationships are made up of three parts. You, your partner and the collective you. You support your partner with their Myasthenia but it is important that they support you in return. Without this equality, the triangle will collapse and it becomes more difficult to enjoy your identity as a couple. This entry is really about the most important team of all – you and your partner.

Over the last number of years, Laurna and I have, without knowing it, been defining and refining the ‘contract’ between us. This obviously isn’t a real or physical contract, more a collection of deals, boundaries or compromises agreed over time. Laurna probably has no idea that this ‘contract’ exists (sorry!) but it is a useful way for me to think about things. These are some of the ‘clauses’ that Laurna has unknowingly signed up to, to help me be a supporter 

Communicate (everytime)

It took a long time for me to trust that Laurna would tell me if she wasn’t ok. I had to become quite strong in asserting my need to know this. In considering whether to walk another stage of the Camino de Santiago last year, I made Laurna promise that she would be honest about how tired she was feeling throughout. Fundamentally, if something goes wrong, I am the one that needs to figure it out – not an easy task on the side of a mountain. This applies to all scenarios, from doing a grocery shop together to going out for a meal. If you’re telling your partner that you’re not feeling so good when you’re already getting a lift home from Tesco in an ambulance, the horse has already bolted.  

Laurna is generally really good at communicating but I know it’s not easy for everyone, particularly for men with Myasthenia who may be used to being ‘the strong one’. Allowing yourself to be vulnerable is difficult but we can’t help you if we don’t know about it.

Discuss decisions

People with Myasthenia have to make lots of decisions every day. Laurna will decide quite regularly whether to increase her medication if her ptosis is playing up. She might also be deciding whether to decrease her medication as part of her ongoing campaign to become ‘drug free’. These decisions are ultimately Laurna’s to make but they have an impact on me. In one instance, I was working overseas for a week. Laurna decided to step down her drugs while I was away. I came home days later to this frankly exhausted, depressed person. Besides from being obviously upset to see her like that, I also then had to cancel plans for the following days which I would never had made if I had known.

So little of the Myasthenia rollercoaster can be controlled. Where there is an element of choice, I think it is important to take advantage. This can apply to all sorts of things, for example, deciding on a ‘good’ time to take 6 weeks out for a Thymectomy, whether to try a new treatment or get involved in a trial. A bit of team planning can make these experiences easier and probably safer as there are more opportunities to put the right support in place.

Compromise

This is something Laurna and I work hard to achieve on an ongoing basis but the example I would like to share is not actually from our collection of stories. Instead, I came across a lovely young woman at a conference recently who was very upset because she and her partner were having problems due to their differing energy levels. On nights out with friends, she would be tired and want to go home early whereas he would be having a great time and want to stay. By all accounts, there were some fraught taxi journeys home. 

Another woman shared that her relationship was suffering because she wanted to spend their date nights watching DVDs on the couch whereas he wanted to go out together. He couldn’t understand why she couldn’t just ‘pull herself together’ and join him – surely she would feel better for a bit of air and some socialising?

Listening to this conversation was a sex psychotherapist (what a job) who specialises in couples where one or both have a health condition. She was able to share some examples of how her other clients have managed this type of scenario. Couples that were able to agree a plan in advance experienced less friction. They could agree that maybe once a month they would go out together but the other three weeks they would have nights in. When they did have to socialise, they could agree on a game plan for the evening before they left the house e.g. I’m feeling quite tired tonight so I will go for a couple of hours but you stay out/ I’m feeling quite tired tonight can we go for a couple of hours and both come home early. 

I thought these were really interesting samples of the kinds of ‘clauses’ that may appear in other couple’s contracts. Every couple is different but the one thing I think we all have in common is the need to protect the two individuals at the heart of a beautiful relationship

365/365 – What’s next for me

Well it’s finally here. I’ve been putting this post off for over a month now for many reasons but it’s now or never. One reason in particular has kept me dragging this out and I can finally share it with you today. My future is going to be very different now that 365 days of myasthenia, as you know it, is over. The main reason for that is I’m moving home. 

After nearly 12 years away from Edinburgh, I’m moving back. I’ve got myself a job I’m delighted with for the Scottish Government and this time next month I will be cutting around the streets of my childhood. 

What made me decide to move back now? The pull of my family and friends in the Burgh has been strong for a while now and by late last year I was finding it more and more painful to leave after each visit. Being 400 miles away on a good day felt hard and on a bad day felt intolerable. I’ve always known I’d like to return to my home city at some point, and when this job came up the timing seemed right.

As you can imagine, there’s a massive amount for me to do in the next month. But as I start to work through the seemingly never-ending list, I watch the new door creaking gradually open and prepare myself for the next chapter.

One last thank you for all your support and help over the last year!

363/365 – Capturing the lessons of my 365 days

Since I began writing this blog more than a year ago, its been a frenzy of trying to keep up with the passing days. As I touched upon in a recent post about the lows of blogging for a year, the time commitment can be difficult when life is busy with other things. It has meant that during the year I’ve had very little time to think much beyond the 365 days and that’s why I’ve taken longer than I hoped to finish. So now that there only a few granules of sand left in my egg timer, I’ve been thinking ahead to what’s next. More about that in the penultimate blog. 

In this post I want to look at how I’ll be using what I have written. Over the year I’ve had fleeting thoughts about whether I could use the material in the blogs for something more and self publishing an e-book was something that I considered early on. I loved the thought of it but didn’t think twice about how I’d do it, what the focus would be or the format it would take. I’m still unsure about what the answers to these questions are. But, as I read back over the posts, I grow more sure that I want to tell a story about myasthenia through collecting the blogs into an e-book. 

If you have any suggestions or experience that you’d be willing to share, I would be incredibly grateful. Ideally I’d like the MG charities to promote to people when they are first diagnosed as the feedback I’ve had this year has often been that people wished they had it early to see that they can still live a full life. But like living with the condition, I’ll need to take this one step at a time. 

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”.