348/365 – New Year’s resolutions 

It’s that time of year where the motivational quotes and thanks for the year that’s been are covering Facebook. If there’s a time for looking backwards it’s today, but it’s also my favourite time to think about what I want to be different in the New Year. 

So my resolutions for 2016 are:

1. To be better at keeping in touch with all of my loved ones

With a few funerals at the end of 2015 for people that I hadn’t spoken to enough lately, it made me determined to get better at keeping in touch. I started this with writing Christmas cards but not as many as I would have liked. 2016 is going to be better. 

2. Keep working hard to spread awareness of myasthenia

It’s been a good year for myasthenia with it making an appearance on TV show Empire and #ihaveheardofMG reaching far and wide on social media.

At the end of 2015, I worked with the MG community to create this Faces of Myasthenia video and it has been viewed more than 500 times. I’m going to do a lot more to promote this and try to get people to share their own images/videos with the hashtag #FacesofMyasthenia. 

I’m sure there will be other opportunities to raise awareness and I’m going to keep trying to find them.

3. Try to be healthier all year long

I’ve had bursts of really looking after myself and bursts of not caring.  I hope to be more consistent this year with my eating, exercising and sleep. 

While there are lots of other things I want to do in 2016, that’s enough resolutions to keep me going.

Happy New Year everybody!

347/365 – Nearly 365 days

As you can see, I’ve missed the deadline for the grand New Year’s Eve finale I had planned. I started this blog a few days after New Year in 2015 so I’m not going to start 2016 by beating myself up. That’s life after all and it’s certainly the way this year has been – not everything goes exactly as you want it to but one things is for certain ‘life goes on’. 

So I’ll keep blogging until I reach 365 posts and then unleash the new style blog in the New Year. As I wrote about earlier this year, I’m keen to use the blog and its following for others to share their experiences of myasthenia. Also the experiences of partners, children, parents, friends etc of people with myasthenia. If you’re interested in doing a guest blog, drop me a comment below with your email address. 

346/365 – The annual haircut

Just under a year ago, I wrote about getting my hair cut and, as you can imagine, the barnet has got a little out of control in that time. I had a window to sort it out yesterday and visited a hairdresser I haven’t gone to since I was a teenager. 

Back in those days, I would ask my mum to take me to the top salons for my latest style. Be it a messy bob, a crop, a flash of red or a full head of highlights, having a good haircut was important to me. 

This isn’t only because I was a frivolous teenager – I had very unruly thick hair which made me self conscious. Getting the must-have poker straight look of the time was impossible and that made it a talking point for others (exactly what you don’t want as a teenager). After years of trying and failing to follow the fashion, I gave up and did a Fleetwood Mac (went my own way).

It sounds like such unimportant drivel now, but as a teenager it was a big shift. Experimenting out on my own – trying to find who I was and wanted to be. Realising that nothing was permanent and that if something didn’t work it wasn’t the end of the world. Realising that other people’s opinions didn’t really matter when they were concerning my appearance. Happiness and value had to come from within.

Since then I have gone through a range of life experiences and often feel like a stranger to my younger self. But yesterday I felt close to her as I sat in the chair looking at my face self consciously. I even felt a little jealous and inspired by her daring and swithered about asking the hairdresser for something radical. Except that my mum doesn’t bankroll my hair cuts anymore and so a cut and blow dry was as far as my budget would stretch.

You see for the last few years I’ve had the same cut and part of that is vanity around the myasthenia. I’ve swithered about doing something different but always panic about whether it will accentuate the  eye symptoms. Having it shorter again, which is always what I’ve been drawn to, would draw attention to my face and thus my eye. Plus styling can be difficult when I’m feeling fatigued as my arms can feel heavy and tired. The lowest maintenance possible the better, has been my reasoning. 

But in the New Year I think I’ll do something different. I’m not sure what yet, but I think it’s time to challenge those fears and the vanity. 

345/365 – The struggles of Christmas-time travels

While the notion of being at home with loved ones over Christmas and New Year can be stressful for some (not me though mum), it’s a patch on the travelling over this period. Add busier than normal transport to  heavier than normal bags and the price our bodies are paying for over indulgence. It doesn’t make for a very rewarding experience. 

I’m travelling over to Dublin for New Year tonight and I’ve never been so glad to reach the departure gate for a rest. The presents for Elaine’s family, along with a little bit of bargain booze for the celebrations, and some of my own gifts meant I had to keep switching arms.   

It’s time like this when I’m reminded how much easier I need to take it now. Regular breaks were required between the entrance and departure gate whereas before I would always volunteer to take others bags as well as my own without really breaking a sweat.

I wouldn’t have dreamed of looking for a trolley in the past, but tonight I was desparately scanning for one without any luck. Alongside the upheaval of leaving the family and friends in Edinburgh, I felt like crying struggling between the check in to the gate and was kicking myself for not leaving more at home. 

Here’s hoping there’s a trolley in Dublin to help me get to Elaine.

344/365 – Has Aziathioprine worked for me?

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

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

Influence of the thymectomy?

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

Stepping down

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

No response to aziathioprine 

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

343/365 – Sweating out the turkey 

After two days of Christmas indulgence and my third tonight, I needed an exercise fix today. The sun was finally shining and nostalgia came over me – I decided to run my favourite route near my family home. With amazing views across Edinburgh, the 9km route is always a pleasure.   

Today I did it without medication which is a first. I woke up late and didn’t have time to digest breakfast, take medications and then go running. I didn’t intend to go out for a long one – just a quick burst to get my heart pumping harder. But with the sunshine and as the wind of the last few days finally calm, I was really enjoying striding it out. 

I managed the distance at an easy pace but by the end of it my legs were heavy. I’m delighted that I made it and feel better for it, but wouldn’t run without medication in normal circumstances.

342/365 – Role models with myasthenia in the public eye 

How many times a day do you  discount yourself because of something that can’t be changed? During one of my conversations at Christmas, my cousin asked a question where I automatically ruled myself out due to myasthenia.

We were speaking about journalism and my cousin asked if I had ever or would ever try to do news presenting on TV. While there are many reasons that I haven’t in the past and won’t in the future, I automatically jumped to ‘I can’t because of my wonky eye’. I want to believe that it isn’t true – that anyone who wants to be a broadcast journalist, or any equivalent where they will be in the public eye, with the right training can. I’ve never done any broadcast journalism and have never been interested in doing any. But when you look at who is currently presenting news on TV there is a lack of diversity when it comes to disability. The lack of role models is a problem.

Without positive examples, I wonder how many other people believe that they would not be able to do a similar role? There is work needed to ensure that people with a disability are given more exposure in the public eye so that there are role models for the next generation. 

341/365 – Myasthenia and looking after kids

The parents out there are going to give a massive sigh at this one but I’m exhausted tonight after six hours of non-stop entertaining my little cousins. I love all four of them to pieces, but seriously I’m ready to sleep for a week. It’s made me unsure about how I’m going to find the energy as a parent. 

I loved helping my little cousin with her dinner, then we started with table tennis. In between shots I was blowing up and tying balloons, helping set up pool tables and taking turns at Jenga. I’ve never felt like a better multi-tasker – seriously how do parents of more than one child cope with only one pair of hands? And anytime I needed to take a break for you know the toilet or a cup of tea, the little darlings would be waiting beside me ready to force the bat/pool queue etc back in my hand. 

I love being able to focus my complete attention on them particularly when I’m feeling strong. But today I was thinking about how parents cope on symptomatic days and I’ve got to take my hats off to all the parents with myasthenia out there who find the right energy each day. As I said, you’ll be sighing at how pathetic this sounds but I have a newfound respect for the strength you are able to find for your children every day. 

340/365 – Christmas Day shenanigans 

Well that’s Christmas Day over for another year but what a memorable day and night my family had. Once again, it reminded me of how lucky I am to be surrounded by such a wonderful bunch of eccentrics.

 After our usual quiet Christmas morning of present opening, operation ‘get the house and dinner prepared’ took us almost right up to the family arriving. I had just enough time to pop around to my former childminder’s house with a present – unfortunately I arrived as they had sat down for dinner. Great timing as always. Still, I was grateful later that I had made the craply timed visit. 

After a gorgeous dinner, present opening and lots of catching up, we started on the games. That’s when my childminder and her husband arrived at the door and the party got started with a sing-song. Most of us did a spontaneous turn and many a cheers was had. Call me oldfashioned, but I think that’s exactly what Christmas should be about. 

339/365 – Not merry Christmas Eve

As my family did our Christmas Eve rituals, I was thinking how I can hardly believe it’s been 365 days since last Christmas. Thankfully there is a world of difference between how I’m feeling today and last year. 

Then I was still recovering from my thymectomy, was on anti-biotics for a chest infection and, as a result of both and more, I was exhausted. As a result of that, I looked and felt terrible.

Today, I started with a run despite the howling rain. After our cinema trip to see Star Wars: The Force Awakens, we had a wet and windy stroll around the Christmas markets. I’ve added a picture below as, despite the chill we all got, it’s the place that captures the spirit of Christmas for me.  

To warm up we headed to our usual Christmas Eve spot, where I’m pictured above, for some dinner. Because I’m feeling better, it’s tempting to have a few drinks to celebrate but I’m determined to be in the best possible form tomorrow. So I’ll have a toast at the bells and then to bed early.

I hope you’ve had a strong and happy Christmas Eve and all the best for tomorrow.