56/365- Copen-haven’t yet

Excuse the terrible wordplay in my title but I want to cut straight to the chase. Sometimes two intelligent people (well…we have degrees and challenging jobs so I’m going to pretend) can only look at each other and laugh at their own stupidity. Yesterday, Elaine and I had one of those moments as our train pulled into Stanstead airport and we remembered that we were actually flying to Copenhagen from Gatwick. In fairness to us, we are flying back into Stanstead..but still. As hovercrafts are still a thing of the future, and we didn’t feel like nabbing a plane and crew to fly us across London, it was better to admit right away that our flight was a bygone. 

We holed up in the Scandanavian-esque Costa coffee to look at our options. Of course the cafe had no signal in an airport full of it, but eventually we got connected to the airport’s wifi (for the small price of giving it unlimited access to spam our mailbox). The options were sparse. There were no flights that didn’t include a stop over on Friday and the next best option wasn’t until first thing Saturday morning from Luton. Noooo…not Luton. The same Luton that takes a lifetime to get to from, well, anywhere.

After checking out some rather extortionate options, we bought the Luton flights knowing that it would only cut into our Copenhagen time by a few hours. Also, thank goodness to Easyjet the flights were pretty cheap. Now we had a way to get our weekend break, and had decided to make the most of our first night ‘away’ by booking a glamourous airport hotel, but how did we get to Luton?

Although it’s only an hours drive from Stanstead, my Citymapper app suggested it would take 112 minutes on public transport and neither of us had our driving license to hand. Taxi…that’s a bit extravagant right? It was £75 private hire which is less than it would have cost us both to take public transport. Pretty disgusting really. 

Thankfully our cabbie was prompt and knew shortcuts to avoid the Friday night rush-hour traffic. He also didn’t mind making a toilet stop for the small price of a cappuccino. 

By the time we reached the Luton Ramada, I felt sick from all the excitement (and possibly the mini eggs). I had a lie down before dinner in the hotel – the option of heading into Luton was mooted and quickly dismissed considering the 5am alarm. (Below is our hotel in all it’s glory this morning)

Like all travel misadventures, yesterday was all about what we made it. We spent the night catching up and chatting about things big and small, from the Assyrians to Beyoncé, over a lovely steak dinner and glass of Pinot noir. What we had decided would be an early night turned into a late one as we continued yapping over a night cap. Although the view outside was of a motorway, we could have been in a million more scenic spots and it really wouldn’t have mattered. 

I’m feeling drained today – from the stress of yesterday, the late night and the early morning – but mainly I’m bursting with excitement as we are just about to board our flight. Because of the mishap, arriving in the Danish capital is going to feel even more special now. 

Happy Saturday everyone!

55/365- Happy Rare Disease day

The day has come – Friday the 28th is international Rare Disease day and people all over the world are meeting to discuss, fundraise and raise awareness about conditions like myasthenia gravis.

Today, it’s going to be difficult for me to engage in any of the events as I’m going to be working from home and then flying to Copenhagen for my birthday weekend. However, I’ll be looking for ways to raise awareness online. I also shared my story on the Rare Disease homepage, which you can do to. I’m just waiting to see if it gets approved.

I’ve tried to do my bit through this blog and also by sending a couple of stories to national and local press about people living with myasthenia gravis. Sadly, there has been no pick up so far but I’m hoping we will still be able to get the stories printed without the rare disease angle. These women are not only inspirational but their stories would raise awareness about the younger generation of people with myasthenia gravis. They have also been very brave in sharing their stories with me and I want to do them justice by getting them printed.

Lessons learned

I’ve learned a few valuable lessons about the way to approach getting media coverage in future.

Time: Although I am a qualified journalist, I forgot the amount of time required to get stories into the press. I also didn’t give myself enough time to chase them up properly, which is what I often needed as a reporter to get a story in print. 

Content: I wrote the women’s stories as articles rather than press releases because that’s what I’m familiar with. However, I forgot what it’s like to work in a manic newsroom – press releases are easy to deal with as you are used to turning them into stories. Pre-written articles are no doubt more problematic. I thought I was making it easier but in fact I’ve probably just confused them.

Support: As my new job is ramping up, I was very short on time to write and send the stories out to the media. This is when I should have asked for support from Myaware. Instead, I’ve asked for it too late. I’m hoping I’ll be able to get the staff there to help turn these stories into press releases and get them some well deserved coverage. 

Anyway, they are all valuable lessons to learn and hopefully it’ll be easier to get press coverage in future. 

Happy Rare Disease day everybody – let me know in the comments if you are celebrating!

54/365 – Stepping down the steroids

This week I’m delighted to say I’ve been able to reduce the dose of steroids I take. I upped my medication in January after noticing my speech was one again being affected by the myasthenia gravis. It started coming back only after I had had a few drinks, but then I started to get the heavy tongue feeling when talking for a prolonged period (a frequent occurence for a yap like me). I couldn’t help feeling like I was taking a backwards step by upping the medication – unfortunately there’s no such thing as a straight trajectory with MG. I’m still getting my head around the idea of continual fluctuation. I’m not sure I’ll ever be able to just let it be.

Anyway, after a few days on the higher dose, the speech issues stopped. I could have come back down after a week or so, but I thought with starting a new job that it might be wise to allow myself to continue with the extra boost. The worst thing I could imagine was that it might start to go during one of my many introductory meetings – I didn’t want to be spending those precious moments self consciously waiting for the tell tale signs to start.

I’ve definitely noticed a difference in the way my body feels while I adjust to the lower dose. I’ve taken it slightly easier this week with my exercise schedule, but not much. On Monday, I felt much stronger than I had the previous week at the lunchtime abs class, however by Tuesday my arms were visibly shaking during side planks in my yoga class. I pushed on and felt good for the 30 minute run on Tuesday evening, but during my 6.5km after work walk on Wednesday my legs were also feeling shaky (I’m pictured crossing the Lambeth bridge). To finish my week I did a quick session on my lunch break on Thursday – mainly for stress relief after a manic morning. I struggled through a 20 minute cycled and my arms felt as if they were ready to give way after only a few push ups. Time to give my body a break for a few days. Just as well I’m off to Copenhagen for my birthday weekend.

My aim is to get down to 10mg a day within a fortnight and then hopefully decrease even further. I’m intrigued to see how my body copes over the next few weeks adjusting to the lower doses – to help it I’ll try getting as many early nights as possible, continuing to cut back on the alcohol and keeping up with the healthy diet. 

53/365 – Struggling with the new diet

As it’s been 15 days since my diet update, it’s time to admit that I’ve been struggling with the new gluten free and dairy free lifestyle. 

With work picking up and my evenings and weekends filled with exercising and catching up with friends and family, it’s been really tough to maintain. 

One of the easiest ways to socialise in this cold weather is to go out for dinner. In the last fortnight I’ve eaten out more times than I had in the rest of January and February put together (a whopping six times). This is due to having visitors (which I love) and my London friends suddenly feeling sociable again after the January blues/skints. In my experience so far, restaurants are generally terrible at providing GF/DF options – the one exception to this is my new favourite London Tapas place, The Port House. However, I’ve not been seeking out the healthy options either – on Monday night I went for a cheese burger in one of our local pubs. Not exactly the closest option to GF/DF.

Alongside eating out, with my days becoming busy again, finding time to shop in health food stores for specialist products has become more difficult. Finding time to prepare dinners for the next day and to research new recipes has also become a struggle.

I think this is a key point – rather than expecting these things to happen magically, I’m going to have to be proactive, and plan time in my weekly schedule, if I want to continue with the GF/DF.  

I’ve also found with tiredness setting in, I tend to get more tempted for sugary gluten and dairy treats during the late afternoon slump and in the late evening. Today I plan to spread my ample snacks out better so I have something sweet, probably my dairy free dark chocolate, left come 3.30pm when the cravings start. 

So how am I feeling about the slip?

I’m trying to be kind to myself as I’m not even a month into the new job. Thankfully I’ve not gone off the rails completely and, while the slips have been more regular of late, I’m still predominantly eating GF/DF. 

Now that I’ve acknowledged the struggles, hopefully with better planning, less food related socialising and a bit of willpower I’ll be able to continue with the experiment to see how it affects the myasthenia gravis. At this point, I don’t think it’s fair to say.

52/365 – Cooking with myasthenia gravis

While I have been lucky so far that my limbs haven’t been affected by myasthenia gravis, other than occasional heaviness and tingling, it may not always be this way. MG changes over time and when your arms or legs are affected I’m told everyday tasks can become very difficult. This ties into the spoonie theory post from yesterday. I’ve heard stories of people having to crawl or slide down stairs and, even worse for me, where lifting kitchen utensils becomes practically impossible. 

 It’s not that I’m going to be entering Masterchef any time soon, but cooking is both therapeutic and rewarding for me. I look forward to making dinner after a long day at work – almost as much as I look forward to eating the food I’ve cooked. I love having people over for a home cooked meal, taking my time trying new recipes at the weekend or putting together a brunch spread to enjoy over a few hours. I love food and, by association, I enjoy cooking. 

 So how would I cope if my arms became weaker? It falls into the you can’t worry about every eventuality category for me. At present, the worst I get is after a hard workout I may struggle to open jars or cans. If it did get worse, there is guidance for how to stop your arms getting too fatigued while cooking online.

The best tip I’ve read so far is cook in batches when you’re feeling strong.

The other side of this is MG can cause difficultly chewing and swallowing, which impacts what you cook and eat. 

Helpfully Myaware is putting together a recipe book. This will contain dishes that can be made without causing fatigue – both in cooking and eating. They are being provided by people with myasthenia who have tried and tested them and if you have a recipe you’d like to submit, you can email Sarah.hindley@myaware.org.

I leave you with a photo of my dinner this evening (I told you Masterchef isn’t going to be calling me anytime soon) I’ve not long finished making tonight’s meal – as my friend commented recently we are often on Spanish time here as we don’t get home until late and then start to make dinner. 

51/365 – What I mean when I write about the spoon theory

How do you describe what it’s like to live with myasthenia gravis? I’m trying to give people a sense of this with 365 Days of Myasthenia, however wouldn’t it be fantastic if there was an easy anecdote you could share whenever someone asks you that very question rather than having to explain how it affects each part of your life? That’s what the spoon theory attempts to do.

A few weeks ago I was confused about a hashtag people with myasthenia, particularly in America, were using to tweet – #spoonie.

‘What does #spoonie mean?’

I asked the global audience on Twitter and I was sent a link to this website.

To summarise, a girl is asked by her friend what it is like to live with a chronic illness. They’ve been friends for a long time and she’s baffled by the fact that her friend hasn’t grasped it. To demonstrate what it feels like, she gives her friend eight spoons. For any activity that she does, from brushing her teeth to walking for the bus, from phoning a family member to making food for dinner, she has to give up a spoon. The aim is to try to spread out the spoons throughout the day so that she is able to do what she needs – from getting up in the morning to going to bed at night. However, her friend quickly realises when describing her typical day, that she would be running low on spoons very quickly. The friend with the chronic illness physically removes each lost spoon from her friend so that she really feels the depleting pile and when the stock runs really low, grasping what all this really means, she gets upset.

Spoons are obviously a metaphor for energy – it takes a lot out of someone with a condition like myasthenia to do simple tasks and we have a finite resource to spread out across each day. The website is called ‘But you don’t look sick’ and that is part of the problem for many conditions – because you don’t look sick people can’t understand that you have less to give sometimes. We sometimes don’t help ourselves by trying to hide that we are tired or low on energy. We try to push ourselves to do more than we should. However, as the spoons theory describes, we are then borrowing from the next day’s supply.

While the version of this anecdote on the website is a bit longwinded, I think the metaphor works well. I find that the amount of energy I have fluctuates, but there are days where my legs feel too heavy to move, I can’t stop yawning even though I’ve had eight+ hours of sleep and I need to take regular rests. Everyday life becomes a challenge and my energy supplies are limited. People struggle to believe this because I force myself to do exercise, but there are plenty of occasions that my legs are like lead. On these days, I’ve learned that forcing myself to do more than I can leaves me with little in the bank for the next day.

As mentioned yesterday, I’ve had my mum down to stay this weekend and it’s been lovely. However, as we’ve been busy sightseeing and chatting over good wine and food, I know I now need a couple of early nights to give my spoon pile a boost. I’m pictured above leaving the office this evening -looking and feeling drained – and it’ll be an early one for me.

50/365 – First big milestone

I know I said I would write about the spoonie theory today, but then I realised it would be my 50th post. It seemed like a substantial milestone… and then I worked out I still have 315 posts to write. So at this point I’m around a seventh of the way through my 365 days. This is strange as it feels like I just started putting it together yesterday and yet I reckon I’ve already spent about 50 hours (roughly an hour per blog) writing.

Thank you
At this first ‘milestone’ I want to thank the many people who have engaged with the blog.

First of all, thank you to fellow people with myasthenia who have commented, emailed, shared and liked this blog. It is ultimately for you, and for those like us to come, that I am writing every day and I appreciate any feedback, negative or positive, that you have. I’m keen to develop the blog so any ideas you have for this are greatly appreciated. One idea I like is potentially encouraging others to take up the challenge of doing either 100 days of myasthenia on either social media or via their own blog. If you are interested in doing this please get in touch. The more people we can get to show the daily changes and the different issues we face, the more awareness we can raise about the condition.

Secondly I want to thank my family and friends who have been hugely supportive. My mum, who I have staying with me this weekend, has been a source of inspiration for different entries and has constantly supported me with this. At the same time, she has constantly checked that I’m not finding it too demanding/emotional to undertake. This weekend she has told me several times that she is proud of me for what I’m doing and it means a huge amount (that’s why my number one fan is pictured with me today).

Many of my lovely friends have engaged with the blog and shared their thoughts on it. The fact that they/you are taking time out of their/your busy lives to read it is massively supportive and means a lot to me. I hope that it continues to be educational and interesting, and, for friends that live far away, that it makes the distance feel less.

To Elaine, I also say a massive thank you. I understand that my writing this blog it isn’t always convenient and that it can cut into our time together, but you have made it clear, through listening, encouragement and engaging with the content, that you understand this is important to me and that you support me. I hope I can do the same for you in the future.

Moving forward
I’ve had almost 4,500 views over the last two months, and readers from all over the world, but I want to keep reaching more people.

So I hope by the time I write my 100th entry, I’ll have been able to secure some news coverage and add a couple of video entries. I’ve tried filming a couple of videos with Vine but they’ve turned out terrible. However, that’s next on the to do list as I’m running out of creativity with the selfies. If I’m getting fed up taking them, I’m sure you’re getting fed up looking at them. Still, I hope the point of having them is clear – to show how the condition fluctuates from day-to-day.

Thanks again everyone – your support means a great deal to me. Please let me know if there’s anything you’d like me to cover that I haven’t written about yet.

49/365 – Getting involved in the myasthenia gravis community

Following on from my post about being defined by myasthenia gravis, I want to write today about getting involved in the MG community.

As I said yesterday, hiding from the fact that you have MG can be not only damaging to yourself but also it limits the progress of raising awareness in your social circle and beyond. In order to feel strong enough to speak about your condition, having support is key.

While people have a number of arrangements, a great place to get, and offer support in return, is the Myaware community. With regional get togethers across the UK and Ireland, a young persons group in London (with the potential plan of moving meetings around to other parts of the country), numerous events and an active online community, there are many opportunities to discuss your situation, feelings and raise any questions you have with fellow people with myasthenia. Not forgetting my international readers, there also seem to be charities across the globe that offer similar kinds of support.

Although charities have limited resources, if there isn’t a group in your area, and you feel there is a need for one, you could always get together some volunteers to run it.

The benefit of joining a support group
Joining the Myaware community was one of the first things I did when diagnosed in 2013. I needed to know how people coped, what their experiences were and that it wouldn’t always be this frightening.

I initially went along to a conference, where I met some lovely people who were full of information and warmth. I met a mum who’s daughter had MG and she was struggling to cope and I met a couple who mentioned their daughter also had MG and was involved in a young person’s group.

I then plucked up the courage to go along to said young person’s group. Not knowing what to expect, or knowing anyone, made it nerve wracking. At this point I imagined how difficult it would have been getting the diagnosis even a few years earlier when I didn’t have the confidence I do now.

Right away I was made to feel welcome and had some great chats about living with myasthenia but also, as it was coming up to Christmas, we were discussing lots of other things too. This fits in with what I was saying yesterday about not being defined by the condition – it is only part of who we are.

I’ve since been back to a few events and they have always been worth attending. The next young group, for people up to 45, is on Thursday 19 March and is a pizza making night in High Holborn, London. There are 20 places so if you are interested, email Sarah.hindley@myaware.org

If face-to-face doesn’t work for you
Whether it’s difficultly travelling to meetings, child care issues or shyness (along with many other possibilities), the group meetings don’t appeal to everyone. However, there is now a very active online community for people with myasthenia.

Today’s photo is how I’m often seen – checking the latest happenings in the myasthenia online community via my phone.

As I’ve mentioned before, the Myaware Facebook community group for people between 18 and 45 is a great tool for people to question, empathise, support and release. It is a very active and friendly page, with at least one or two posts most days from members. This means from the comfort of your own home, you can make friends and share experiences. It is a closed group, but if you are interested in joining use the email address above for Sarah.

Twitter and Instagram
There’s a growing international MG community on both of these social media channels and to find them all you have to do is search one of the following:

#myastheniagravis #myasthenia #mgwarrior #mg…

Again, these hashtags are used when people need support or to vent. Although these are not as active as the Facebook community yet, the presence is growing.

Another hashtag that lots of people with myasthenia use on these channels is ‘spoonie’, which I’ll explain tomorrow.

To sum up, whether you want face-to-face contact or prefer a virtual community, there are lots of options for you to get involved. I hope to see you in one of these communities soon.

48/365 – Being defined by myasthenia gravis

I’ve recently been informed that a small number of people with myasthenia find a couple of terms related to the condition offensive. These are: ‘myasthenic’ and ‘sufferer’. I just want to apologise about my use of these terms and any offence it may have caused.

More interestingly than ‘sufferer’ which has connotations of being a victim, the reason some people have taken offence to ‘myasthenic’ is because it makes them feel defined by the condition. Although personally I don’t mind the term, I understand the frustration. MG can take up a lot of your mental space and so it’s better not to reinforce it’s prominence in your life through language. The preferred alternative is ‘people/person with myasthenia’ – bit of a mouthful but it suggests working with the condition rather than it dominating.

Defining your identity wholly around MG is not healthy – it suggests that it is in control of your life. While the condition does fluctuate, so can be difficult to predict, it doesn’t need to be your defining characteristic. It suggests giving yourself over to your rogue immune system – it suggests passive acceptance. When people describe you, what do you want them to say? Is it simply ….. has myasthenia? Probably not.

Can being defined by MG be a positive thing?
Keeping all of the above in mind, there is a danger of going too far the other way. Many people I have spoken don’t want to ‘come out’ as having myasthenia and that is their choice. They are worried about people’s reactions, about being underestimated and how family members might feel about them being open. I get all this, but I personally feel like there’s a responsibility on me to try to raise awareness about the condition. This is difficult to do if you’re not willing to admit having it.

I’ve seen a lot of social media posts centred around the idea ‘you are more than your condition’ and of course that’s true. But this focus, to me, risks damaging the idea of community that can be really comforting (which I’ll discuss more tomorrow) and also encourages hiding rather than being proud of the struggles we endure and survive. I am definitely more than my condition but I do have to fight against the MG most days.

I’d love to get to a place where people with MG can say that they have the condition and there will be a look of recognition in the person’s face. Even a glimmer of recognition will be an improvement on most conversations we have. While the good work that charities like Myaware to raise the condition’s profile helps immensely, every time someone with MG speaks about their condition they are helping to build a future where the term ‘myasthenia gravis’ will no longer evoke blank expressions.

47/365 – Full thymectomy vs keyhole

I was asked a little while ago, by one of the women I interviewed for Rare Disease Day, about why I had gone for the full thymectomy. It seems fitting to write about it this week as it is my six month scar-iversary.

From my initial appointment with mr consultant, he stressed that I should start thinking about having a thymectomy. Feigning interest, internally I dismissed the suggestion. There was enough to process without having to factor in going under the knife and spending a week in hospital. I had work to consider and my job has always been a top priority. I had all the fitness challenges I had planned to get through. Then, on top of the inconvenience factor, there was the fear factor. The operation would have to wait until it fits for me, is what I thought before moving on.

However, like many things in life, I wasn’t really in control of this decision.

The more I palmed mr consultant off at our appointments, the more insistent he got that I needed this operation (and to put my health first more generally). I couldn’t help wondering whether he was putting my health first. It all felt a bit experimental – up this drug here, have this cut out there. And of course it is experimental because how can it be anything else when there is no proven cause for myasthenia.

The following picture, by Myaware, shows the location of the thymus.


The charity also gives the following description on its website: ‘Hormones produced by the thymus gland are thought to affect the immune system and the neuromuscular transmission although the exact role in Myasthenia Gravis is not completely understood.’

Before I knew it, I was booked in with a surgeon to have a discussion. What’s the harm, I thought? It’ll probably take months for the appointment to happen and then there will be a waiting list the length of the country to actually have the surgery. Not so much. I went along to see the surgeon who told me I could have the operation the following Monday if I liked. I told him I would need to think about it. And didn’t until I was practically told I would never get better without it.

In the mean time, I went along to a Myaware Young Generation meeting and had a chat with one of the lovely ladies there. She had the full thymectomy in a rush because she had a thymoma, a tumor on the thymus gland. However, she said if I was actually going to go for it, I should consider keyhole. It was the first I had heard about the option of keyhole surgery for this operation – why after my consultant speaking about it many times, and seeing a surgeon, was this the first time I was hearing about a much less traumatic option?

I did my research and went back to my consultant prepared. However, his argument for the full operation made sense. He said that in some instances, the keyhole surgery can only remove part of the thymus and the patient then has to undergo the full operation anyway to remove the whole thing. This means putting your body through the added trauma of an extra operation. So it was a simple choice really.

Should it have been? Although the following is based on a small number of conversations I’ve had, it’s true to my observations thus far and I would be keen to know if you contradict/fit with what I’m about to say. From the people I have spoken to that are in remission, all have had keyhole surgery, whereas I’ve yet to meet someone who has gone into remission from the full thymectomy. A few people have told me they have gone into crisis mode or had a significant relapse after the full operation.
I’ve yet to hear the same about keyhole. This suggests to me that if more finance is spent on developing techniques to ensure the thymus can be taken out through keyhole, remission rates could increase. As I say, it’s not scientifically proven and I definitely want to be proven wrong (or right) with empirical evidence.

Anyway, I went for the full operation in the end (tonight’s picture shows nearly the full length of my scar) and prior to it there was a discussion about dissecting the thymus to see if it revealed anything. I got excited at the prospect of this ‘medical research’ into my personal condition and looked forward to feedback – the only information provided so far is that it had been a bit more active than it should have been. I’ve been discharged by the hospital, although I may have to go back due to my superhero powers.

But for now I’m left wondering if I made the wrong decision not pushing for keyhole – perhaps this is as fruitless as worrying about a cause for my MG. People who have had either type of thymectomy – please do post comments about your experiences.