Tag Archives: christmas

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!


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.

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. 

337/365 – Counting my blessings this Christmas

Finally…I’ve made it to the end of my year in London and I’m on the train home. After the usual stop-start crawl out of this sprawling chaotic capital, the train has found its flow and I’m hoping it’ll inspire some flow from me too. 

While we’re waiting for that, I can tell you that I’ve just had an overwhelming flood of gratitude. I’m grateful that I’m heading home to my family, to my friends and to a place where I can rest and think clearly. I’d be extremely lucky to have any of those things to come home to but to have them all makes me feel blessed. 
Nothing is more sacred than the people around you and for the first time in years I’ve written cards this Christmas. Proper cards – with two sides of thoughtful words and a request to hear news back. It can be so easy to let relationships slide in this busy world, but I plan to fight this in the new year and thought I’d start early.

On the dark days of MG it can be hard to think outside of its high walls, but take a moment to count your blessings this Christmas. 

336/365 – Last commute of 2015

Hurrah – my favourite day of the year since living in London has arrived. The last time I have to push and squash myself onto a busy bus, tube and then walk briskly to get into the office through the Victoria crowds. This year’s commute has been equally crap as last year’s and I’m definitely ready to give it a rest for nearly two weeks. 

Commuting in London is tough for everyone – the sadness can often linger hours after stepping out of the sardine can vehicle as can the frustration and the disillusionment. There are moments of shared joy where humanity makes the long journey down to London’s bowel, but they are usually reserved for afternoons and evenings. 

When you’ve had a tough commute, it can feel like you’ve used all your energy up before even arriving at work. On those mornings – where everything seems to go wrong – I long for the cycles to work I used to have in Aberdeen where I couldn’t feel my hands on arrival and my hair was always windswept and interesting.

Put together with MG, commuting in London can feel impossible when you’re having fatigue days. You feel like crying when someone nips ahead of you to get the last seat and you barely lift your arm up to hold on. Most days I get a seat after a few stops but sometimes it can be half an hour of standing which in the heat and the huddle is tiring. 

Today, transport is quiet as London evacuates for Christmas so I’ll get a seat. Nonetheless roll on 2 weeks of calm Edinburgh and Dublin transport.

333/365 – Christmas dinner number one

I’m delighted to say with only a few days left until I’m off for the Christmas holidays, I’m feeling great. Better than I have in years during the Festive Season. That’s definitely thanks to Elaine for the break from the chaos last weekend. It’s also because I’ve stuck to my promise – of being selective with how I get in the spirit.

Tonight we’re having some friends around for a Christmas meal as we have done over the last few years. The way I’m feeling today reminds of how I felt on this exact occasion two years ago. I had been diagnosed with the condition only a few months before and my symptoms were really bad. I had only just started treatment and was feeling blue and extremely self conscious as  you’ll see from the picture below.  This is the only picture I allowed to be taken of me that night and you can tell through the finger monocle how bad my eye is.
Two years on, I’m feeling so much better in my own skin and comfortable with my choices. I’m going to continue taking it easy up to and hopefully through Christmas so that I can start 2016 on a high.


330/365 – Last push until Christmas holidays

With three office days left until the Christmas holidays, I feel it’s a respectable time to allow myself to get excited. However I certainly won’t be winding down – it’s such a busy week, both in and out of work, I get tired thinking about it.

I’ve got most of my presents (bought not wrapped), I got a good chunk of my Christmas cards written last night and I feel of top of things in the office. But what I’m not on top of is blogs – with 34 following this one in 17 days it’s going to require 2-a-day for the next few weeks. 

Thankfully I’ve got lots I still want to write about including updates on #FacesofMyasthenia – keep sharing and posting people.

325/365 – Surprise Scandinavian weekend 

Months ago Elaine asked me to book today off work as she wanted to organise a surprise Christmas day together. I did this months ago and it arrived, as these things often do, out of nowhere. 

From what she had said, I believed it to be a one-day thing but, as you may have guessed from the title, that’s not the case. 

Last night, when I arrived home, she gave me part of the story when I was asked to help pack my bag. Thankfully I had time to take it all out and start again this morning – after finding out we would be spending the weekend in Stockholm. 

A lot of thought had gone into the surprise – even down to asking anyone who would listen when she should tell me. The sweetheart had even gone out and bought thermals because ‘it can get chilly walking around Christmas markets’. I laughed at her embarrassed, cute face as she said this, but after walking around the Old Town, Gamla Stan, tonight the thermals are already set out for tomorrow. 
While I’m feeling ok at the moment, my eye is bad again and that’s left me feeling a bit down. It’s also been a very busy few weeks of not much quality time.

So this weekend we will chilling out in Sweden’s capital – wandering around cobbled streets with wide eyes full of wonder, picking up some presents in the markets, enjoying a daily fika and getting as much rest as possible.