Talking about myasthenia on the radio

This week I’ve had two firsts happen to me – both of which were pretty exciting.

1. on Tuesday evening I spoke to E Care Radio in America about living with myasthenia gravis
2. on Wednesday, something I wrote was shortlisted for a short story competition

While the radio interview is the most relevant for this blog, the short story news is also related. I say that because it was writing this blog every day for a year that gave me the discipline to keep writing. Over the last two years I’ve been focusing more on creative writing and I’ve felt myself getting better (very slowly). Being shortlisted is a huge deal for me as it’s given me the confidence to keep bashing those words out.

Sadly the story isn’t about myasthenia… but you never know about the future.

Radio interview

I was approached about doing a radio show around a month ago by American digital station E Care Radio. As June is Myasthenia Awareness month, they wanted someone to speak about what it’s like to live with the condition and I didn’t feel like I could refuse as I’ve always said I’ll take any opportunity to raise awareness about MG. But once I agreed, I didn’t really think about it again until Tuesday morning…when I started to panic and doubt myself.

Who was I to speak about it? What did I know after a mere five years? Worse…would I be able to talk about the small amount that I do know when the nerves kicked in?

It was the fear of going totally blank that made me write down as much as I could think to say…none of which I looked at during the interview. Still, I think it helped calm me down and focus on what I did have to say. Which was quite a lot as it turns out…the interviewer could hardly get a word in.

I spoke about:

• my tips for coping with MG
• the best things that my loved ones have done to support
• balancing work with MG

You can have a listen to the interview on the E Care Radio website.

Travelling with medication

Travelling with enough medication in my bag for my three month trip was an anxious experience. Let me list some of the situations that caused me to be nervous:

• every border between countries
• every airport security check
• every long bus journey where there were lots of stops before mine and I had to put my bag in the hold
• every time I left a hotel in a hurry
• every time I was in a hostel or hotel where I didn’t think my stuff was safe
• every time I felt my bag was unsafe on the street

I think you get the idea. And it’s not like I was carrying an illegal haul – this was prescribed medication but carrying around 140 pills isn’t something I’ve ever done before. My mind kept jumping to them being confiscated or lost and I had no idea whether I would be able to get more and then I worried that our dream trip may have to be cut short. Along with my passport, the meds were literally the only thing that I couldn’t do without. Especially since my bank card wasn’t working…but that’s another story.

In the first week, I emailed my consultant to ask him for a confirmation of my steroid prescription. I had received a very helpful email from a reader and fellow myasthenic who said having a printed prescription and confirmation of the condition might be handy, but the email was the best I could do. Yet I worried because the email wasn’t translated into the relevant languages and I wondered whether the security guards would engage with them because they were digital. Lesson learned for the next leg of the trip.

When I started the trip I kept all my different types of medication – from painkillers to rehydration sachets – together. Then I split some of them into my other bag, to try to spread my anxiety about a bit and it helped. I buried a couple of packets in beside my walking gear that was mostly unused after Nepal and hoped the south East Asian sniffer dogs were as worn out by the sun as their stray brothers.

Despite all that anxiety, there was only one incident where my medication bag was searched and even that was done rather indifferently by an airport guard in Singapore. That was definitely the most strict country we travelled to where we were told on the plane just as we arrived that if we were carrying any illegal drugs the mandatory punishment was DEATH. They didn’t elaborate by what method but my imagination raced.

And so the anxiety continued until I realised on reaching Bali, our last stop, that I felt a huge weight had been lifted.

As I prepare for the South American leg of my travels, I’m trying to keep that light feeling in mind and challenge a few of the anxieties that weighed me down in south east Asia. But I’m also taking a prescription and letter confirming the condition and my need for medication.

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

Guest post: summing up

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

Thankfully, I have come to the end of my short career as a ‘blogger’. Over the last few weeks, I have tried to share some personal perspectives on supporting someone with Myasthenia. I hope you found them even slightly useful.

Extracting some themes from the jumble of words in my blogs, I will leave you with the following summary of my ramblings

1) having a team is important – yours can be made up of anyone who has a positive influence in your life.

2) Communicate with your team – tell them what you need and don’t feel guilty or awkward about it.

3) Try to put your pride to one side – by letting people help you, it will indirectly help your partner.

4) Know your boundaries – to help you be a supporter, there are some things you may need in return from your partner e.g. communication, being involved in decisions and compromise.

5) Be patient – you can’t fix everything.

6) Google is a horrible place – stick to the facts and avoid the ‘but what ifs…’ where you can.

7) Guilt is not constructive – try and focus on all the good things you can and have been doing to support rather than what you can’t do.

8) Unspoken thoughts can be there to protect you – there is often a nugget of value in the middle of the madness:

9) Be kind to yourself and be kind to each other – you’re both already doing great.

My final point is the most important of all:

10) Give a big two fingers to Myasthenia – When Laurna got diagnosed, I quickly learned that there was a time for talking. Retrospect has shown how important it was that there was also a time for not talking; just being us, having fun and enjoying the life we had chosen together. 

When I look at Laurna I don’t see someone with Myasthenia – I see Laurna. A person who is passionate, smart and kind. A person who I can’t spend enough time with. I completely refuse to let Myasthenia change that – there are so many more interesting and fun things about Laurna and she will never be defined by her condition in my eyes.

So there you have it. If you have made it this far, thanks for reading. I am really looking forward to hearing about other people’s experiences.

 Like Laurna, I have much to learn and more bridges to cross. I always appreciate the support and perspective from the Myasthenia community and can’t wait to read the next instalments. 

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? 

334/365 – What do you admire?

What do you admire? I was confronted with this question today on a shop sign and it made me pause. How often do we take a step back and think about what we admire? I know that I don’t do it enough. This time of year, as we think about endings and new beginnings, is a great time to do so. As I consider the imminent end of 2015 and this blog, one of the things I’m full of admiration for is the strength of the myasthenia community. 

This year I’ve got much closer to many people in the MG community as they’ve opened up and shared their experiences with me. 

There are so many brave MG warriors out there who:

• Put on a smile for their family day after day
• Allow themselves to be vulnerable 
• Confront their condition most days in the mirror
• Have to adjust to a different life than they thought they would have
• Fight to fundraise for research and awareness
• Find the strength to support others with the condition
• Battle through childhood and their teenage years with this condition that sets them apart

And so much more. My admiration for the people I’ve had the privilege of getting to know better this year, and the strangers who find the strength to battle on each day, is boundless. 

Part of this admiration is captured in the video I made about the Faces of Myasthenia. I hope to be able to do much more in the New Year. 

293/365 – Stress and myasthenia

Today is national stress awareness day not that people with myasthenia need to be made aware of the dangers it brings. MGers learn fast that stress can be similar to intense exercise – when your muscles are tense it can increase muscle weakness. However unlike exercise that can be avoided, stress is not something we choose. It surrounds our daily lives and, unless you live in a meditation camp in the wilderness, the key to limiting the damage of stress is to focus on how to manage it. 

Odd that today, as I’m writing this I’m feeling zen. After 5 days in Edinburgh full of long lies, walks, good food, quality time with people I love and even a spa afternoon, stress feels like a distant memory. That’s because these things are all coping strategies for me as well as visiting my favourite pubs where I’m pictured above. 

Here are five things I do to manage stress:

1. Rest

When working the kind of hours I do, rest first and foremost is essential to reduce stress as it is a very tiring emotion. But I don’t find that it alone can take away the tightness I get when feeling stressed. 

2. Talking about why I’m stressed

I’m lucky to have people in my life who not only have the capacity but also the capability to talk about things I’m feeling stressed about. On most occasions, this makes the stress more manageable. Just talking helps me figure out possible solutions.

If I didn’t have people to talk to and struggling to cope, I would definitely reach out to call one of the stress helplines. Knowing the immense impact one conversation with a stranger can have from Childline, I wouldn’t hesitate in giving that option a try.

3. Talking about other things 

A technique I find useful at work if I’m feeling stressed is to go for a chat with a colleague. It can be a 2 minute conversation about anything but that little perspective break helps me focus better and also helps build relationships around the office.

4. Taking breaks – active if possible

I used to be the kind of person who would work right through lunch – those days are gone.  A proper lunch break is vital for me keeping my stress levels balanced and I try whenever possible to make it an active break whether that’s going for a walk outside, heading to a gym or to a class. No matter how stressed I am beforehand, I always go back with a clearer mind.

5. Writing down feelings and options

I’ve always been someone who thinks clearest when writing thoughts and feelings out. This trick definitely works with situations that make me feel stressed. I write everything down and then try to think about a range of possible things that could help. This way I take a more thorough look at the reasons why I’m feeling that way and a more active role in trying to tackle it. 

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. 

245/365 – Anxiety and myasthenia gravis

The fight or flight anxious energy we once felt when hunting wild animals for food and protecting our families is one of the inbuilt reactions that has stayed with us during human evolution. While the situations we feel it in have changed, most people suffer from symptoms of anxiety from time-to-time due to the demands of the modern world.

It can make you feel  upset, worried, shaky, light-headed, frustrated or that you are out of control. It also can bring on panic or anxiety attacks and leave you feeling physically sick. 

Anxiety is something I’ve heard many people with myasthenia talking about, but my first experience came long before my diagnosis. What triggered it out of the blue is something I’m still not sure of  but it was probably related to the long hours I was working as a journalist and with the other stressors at home. My life was hectic and I rarely stopped to relax. Out of the blue I started having panic attacks in the middle of the night, for a while every second or third night, and I felt completely out of control. 
Thankfully, I figured out how to control it with breathing techniques  and giving into what my body did during the attacks rather than fighting it.

Since having myasthenia, I’ve felt anxious sporadically but never to the same intensity. This is not everyone’s experience as many people develop anxiety after getting diagnosed with MG. 

The other day I was looking into anxiety while at Childline and realised I was having some of the symptoms described above. I’ve also had a panicky feeling for the last while that I’ve forgotten something. The fear feels like something is sitting on my chest and has been waking me up in the middle of the night. Even if I have forgotten something, it’s definitely not worth the way I’ve been feeling. 

After recognising this, I looked at anxiety and myasthenia. Many people were asking about it online and for drugs to treat it. I found the following interesting from this document on myasthenia and stress:

Anxiety from continual worry that new symptoms may appear; anticipation of day to day fluctuations in strength, or a fear of crises. Anticipation of medication side effects or potential long term side effects of steroids can also cause anxiety.

I can relate to this, particularly the bit about new symptoms and the potential long-term side effects of the medication causing anxiety. 

The same document has advice on steps you can take to deal with stress but not anxiety. However Childline has a page on managing your anxiety with some useful advice including boosting your confidence, exercise, relaxation techniques and challenging the negative thoughts. Having tried some of these coping strategies, even if you are sceptical, I would recommend giving them a try. It is also worth speaking to your doctor about the anxiety.