29/365 – Last post about work for a while

As a follow on from yesterday’s ‘false start’, today was my first in the DCLG building. Tonight I’m exhausted but that will not stop me from writing this. I feel like I did on my first Friday after starting my post-uni, full-time, job…when I fell asleep on a pub table with a big smile on my face.

Part of the fatigue comes from throwing myself into the new role by trying to tick as much off the to-do list as possible. Having had a few weeks to plan what I’d like to achieve in the role, I felt a sense of urgency to make a start on as many fronts as possible. With this in mind, I’ve also slept terribly the last couple of nights and would have injected caffeine into my eyeballs, if I could have, come 3pm.

Other than being shattered, my first day in the office was really enjoyable. I got to see the work my team does on a day-to-day basis, arranged a million and one coffees to meet key people across the department and beyond, and I started thinking about ways to develop what the content team does. I was given a warm welcome by the director and didn’t get lost once (quite a feat in such a sprawling building).

Here I am in professional mode in yet another toilet shot.

On a personal level, I also checked out what the building’s beauty salon has to offer and booked myself an appointment to sign up to the fitness centre early next week. Best of all, as a Scot, I was programmed from birth to appreciate a bargain and the canteen’s lunch did not disappoint. My £2 lunch included a large bowl of tasty Broccoli soup and a potent coffee (pictured below) that stopped me from yawning my way through the afternoon. Just a tad more affordable than Canary Wharf’s cafés.

Once the working day was done, some of the wider team met for Friday evening drinks in the local pub and I felt it would have been rude not to accept the invitation.
But after a well deserved glass of Shiraz Viognier, or two, I could feel my eyes starting to droop and my body protesting that it was time to go home. So…I listened to it (taking today’s photo on the way back to the tube).

Now I’m all tucked up in bed reflecting on my first real day ‘in office’. One thing I will aim to keep in mind, when beginning my first full week on Monday, is that I should see my new role as a marathon not a sprint. There’s plenty of time to do all the things I want and more, but it’s important not to burn myself out. So when I’m putting together my schedule for next week, it must include relaxation time…perhaps even a facial at the beauty parlour.

28/365 – First day of sorts

While today was technically my first as a civil servant, I wasn’t in my new office with my new team. I spent my it training, with a group of other people from different departments, about writing content for the Gov.uk website.

To save me going into preparation overload last night, Elaine suggested we go out for dinner. It was a genius idea and we decided to try our as yet untested local Japanese eaterie. Having some delicious sushi, aubergine that tasted like banana fritters (pictured below) and some white wine worked wonders on my nerves and made me feel much more relaxed.

As a result of feeling calm and collected, everything went smoothly this morning…well almost. I had time for a nutritious breakfast, made a healthy packed lunch and walked most of the way to the station to get my step count up. So when I sat down in the packed training room and a video about passport control came on, I couldn’t believe it. After such a smooth start, I’d ended up in the wrong session. At this point I’d like to say it was downright bad luck as the receptionist had told me to follow two people, who she believed were going to the same training session as I was. Sadly, they in fact worked for the Immigration Office and had no need to learn about writing good quality content. Perhaps I was a little too relaxed!

After that slight mishap, the rest of the morning went without a hitch and I felt comfortable with the material we were given.

As you can see from today’s photo, stylishly taken in a government toilet, my right eye lid is sadly hanging quite low at present. But I didn’t let it bother me today – perhaps because the group I was in with were warm and didn’t seem to notice.

During my lunch, I went out for a walk to boost my step count and to catch up with my good friend Sarah. Although it was a freezing cold day, I was glad to be able to see the below view on my break.

The beauty of St Paul’s Cathedral always blows me away and, after spending a while appreciating it, I had to wolf down my lunch before an afternoon of putting theory into practice.

The training session has made me feel more prepared for my real start tomorrow and I made a couple of contacts for future campaign work. All in all, I get the feeling it was the first of many positive days ahead.

27/365 – Last day off

Tomorrow I begin my new career – the delay is over and I can’t wait to get started. No more daytime exploration of places like Somerset House (pictured above).

I’ve held off discussing my new role until now as I was waiting for security clearance. From tomorrow, I will be a civil servant working for the government department dearest to my heart, Department for Communities and Local Government (DCLG).

DCLG covers many of the issues I’m passionate about including housing and homelessness. I’ll be leading the digital content team for the department at a very interesting time – with less than 100 days until the general election.

Before starting my training tomorrow, there are a few important tasks to take care of today.

As it’s my last day of free time, I’ve just been to get my third blood tests in two weeks – having MG makes you feel like a pin cushion at times. This set is for my GP to see whether the chest infection has cleared or whether I need more antibiotics. After taking it relatively easy for nearly two weeks, I hope that I can get back to my normal routine. As much as I’ve enjoyed walking and resting, I’m yearning to put my running shoes on and pound the pavements again.

As you can see below – getting these tests done is never quick. Receiving a ticket with number 23 when the board says 9 is enough to make anyone’s heart sink.

As part of the 10,000 steps challenge, I walked to the hospital in rain and hail to get the tests done. However, I still have around 5,000 steps to do today so it looks like I’ll be pounding the pavements slowly home.

The rest of my day will be spent writing up case studies for Rare Disease Day (more about that over the next few days), preparing for tomorrow and resting up. A big challenge for me over the next few weeks will be to continue the daily blogs and the healthy diet. I’m feeling great for doing both and will try my best to keep them going – if you feel I’m slacking please feel free to point it out.

Going back to work five days a week for the first time since September is both exciting and scary, but I’m ready to give it my best shot. First things first though – it’s time to enjoy the stroll home now that the clouds have parted.

26/365 – Superhero powers

Today I want to share one of the weirdest things that has happened to me during my time as a myasthenic. My consultant has now verified that it is indeed odd so I feel comfortable letting know about my secret powers.

It all began when I left hospital following my thymectomy. A couple of days after returning home, I felt the crush of cabin fever and knew I needed to break free. I wanted a relatively easy walk – preferably inside as the weather wasn’t great. As I was recommended against keyhole surgery, I chose the full open chest option and was still feeling very fragile. This meant anywhere too hectic was also out for fear of being bumped into.

Elaine, my mum and I decided to go to a nearby shopping centre as it met most of my requirements. When we walked into the first shop and the alarm went off, we didn’t think anything of it. But when the alarm in the second shop we entered, and then the third, fourth and fifth, started ringing as I stepped over the threshold – we all looked at each other puzzled.

I had made jokes about the surgeon leaving a piece of medical equipment inside me, but I didn’t think there would be many shop tags in the operating room. However, I’ve found since that day, in certain shops, I set off the store alarms going in and out. Usually my ‘I’ve got metal in my chest’ line covers it even though I was sure that shop alarms don’t go off with metal. I guess it’s the embarrassment factor that stops the shop security guards giving me a pat down.

Explaining this to my consultant, we discussed the technology used in shop alarms and both thought that it was some kind of radio frequency. He suggested that it might be the way the wires holding my breast bone together have been inserted. That somehow they are communicating with the machines, but did say he hadn’t heard of it before. I think I know better.

Naturally, I believe that during my operation I must have gained some superhero powers that I will be able to utilise for good as soon as I find out how. A letter to my surgeon should confirm or deny this. In the mean time, I’m going to be working on my name, theme tune and outfit.

25/365 – Consultant Question Time

Yesterday I had my first appointment with my consultant since October. The last time I saw him I was apathetic after the lack of immediate results from my thymectomy. This time I had a long list of questions for him and I’ll go into some of the answers he gave over the next few posts. But for today I’m going to stick with the overall consultant experience.

Let me first say that I know I’m very lucky to be seen by a specialist. I may criticise the NHS from time to time but I would be lost without it. Also, none of the following comments are meant to be critical of my own consultant – just a reflection of my feelings.

From the first time I visited my consultant, when I had been waiting for months and was delighted that I would finally start treatment, the visits have left me feeling confused and low. We go through the same routine each time – a rushed ‘how are you doing’, a quick assessment of my vision and the strength in my muscles and then a re-evaluation of my drugs (normally an increase). Occasionally, to mix things up, I get four vials of blood taken. There is never talk of an overall plan nor is there talk of lifestyle factors unless I bring it up.

I must say yesterday was better because I ignored the voice in my head saying ‘you are keeping this very busy man from other more important work’ and asked him my questions. Those extra 5 minutes or so gave me a lot more food for thought, and more material for this blog, but I was still overcome by a low mood.

My MG feels black and white after leaving my consultant – still there or all clear. But anyone who has the condition knows hardly a day goes by without a new shade of grey revealing itself. It’s the day-to-day battles that make that frivolous ‘how are you doing’ at the start of each appointment near impossible to answer.

I guess the heavily scientific approach of consultants make hope, other than the next dose of drugs working, a challenge. While this is good in that there is never any false hope, for the same reason it is hard. Anyone with a condition like MG knows that some days you need to believe that you will get better because the alternative mindset is bleak.

So what’s the answer? Well, consultants are extremely busy people and I understand the job isn’t to provide counselling or spiritual guidance. While I’ve never been offered it, I know that the NHS offers counselling and alternative therapies to those who might find be suffering from depression or low moods as a result of their condition. I do wonder whether on these infrequent consultant visits, whether it might be worthwhile to have a nurse assess the more psychological side of living with MG before the doctor assesses the purely physical side of business. Again, a five minute chat about living with the condition might eliminate the patient’s feelings of being a medical experiment.

Today’s image is Charlie Chaplin and I who I ‘bumped into’ after my appointment. I needed some light relief and he was just the man to give it to me.

24/365 – Walking therapy

I’ve had to take it a bit easier with my exercise regime this week due to previous mentioned chest infection (which has nearly departed, thank goodness). To stop myself from feeling frustrated, I’ve been making sure to walk at least 10,000 steps – around five miles – a day.

I started this because my fitness pal app has a daily target for 10,000 steps as a sign of an ‘active lifestyle’. But today I found out about the NHS Choices ‘10,000 steps challenge’. It’s basically a campaign to encourage people to build up a level of fitness so that they can start thinking about getting the recommended 150 minutes a week of moderate intensity aerobic activity. As someone who once considered walking to be a non-activity, and then thankfully had my mind blown by lengthy meanders in the countryside, I can thoroughly recommend putting on a comfy pair of shoes and clocking up that daily step count. I find walking long distances gives you a unique kind of stamina – as much mental as physical as you have to accept that the pace and progress will be slow. That in itself is calming.

Fitting in 10,000 steps hasn’t been as difficult as I thought it might be. When I’ve questioned whether I need to take public transport as often as I do, I’ve found I use it out of habit rather than necessity. Giving myself a little more time to walk rather than take a bus is beneficial for stress levels as well as burning calories.

Even on these chilly January days, walking has been great for keeping me engaged with the world. I find the temptation to hibernate in front of Netflix much stronger in winter, but when you drag yourself out, as I’ve had to do over the last few days, you are actively choosing to engage with what’s happening around you.

This weekend I’ve walked from Pimlico to Bermondsey, around Nottinghill and Portobello Road market, and from Oxford Street to the Strand. None of the walks have been particularly taxing, but on each one I’ve found something new in a city that I’ve haunted for two and a half years now.

According to the NHS campaign I’ve also burned around 400 calories for each day of 10,000 steps. The other significant theme for my weekend has been giving the healthy eating a break so I was delighted to read that at least I’ve been incinerating some of the extra calories.

23/365 – Issues with talking

While my eyes are the most stubborn of my myasthenia symptoms, the one I have found hardest to deal with, so far, is the way my voice is affected.

It came on first in the departure lounge at Istanbul’s Ataturk airport in November 2013. Elaine and I had spent three days in Turkey’s capital touring the beautiful mosques, traipsing for miles along the Bosphorous to see the city walls built by emperor Constantine and eating as many authentic iskander kebabs as possible. Nursing a pint of Efes to soothe the onset of post-holiday blues, I suddenly realised that I was having difficultly forming words with ‘s’ in them.

Elaine looked at me curiously as I kept trying and failing to get ‘sorry’ out – but the ‘s’ sound just wouldn’t come out. First of all we laughed about it – being Scottish my go to reaction is usually self deprecation. But, I saw her trying to hide the panic in her eyes and I started to feel scared. That was the moment when I transitioned from ocular myasthenia gravis to full MG (This disappointed me massively as I had already come up with some jokes and blog ideas for the acronym OMG).

My right eye had been getting progressively worse since my diagnosis in September, but I didn’t have my first appointment with a consultant for over a month. Now I also had to contend with this out of the blue speech impediment.
During the flight back to London, I tested other letters and sounds that might be affected, but it seemed to only be ‘s’.

Over the next few weeks, I found it would come on when I was speaking for more than 10 seconds or so or almost right away when alcohol was involved. Speaking on the phone became a challenge, which was a nightmare in my line of work, and when I started to get the heavy feeling in my tongue that signalled it’s oncoming clumsiness, I did my best to try to end calls. My voice also started to take on a nasal quality – like I was pushing the sound of my words out through my nose rather than my mouth. And it became more high pitched. I wished at this point that I had paid more attention to the English language module at uni about parts of the mouth that form different sounds.

For a self confessed chatter box who works in the communication industry, no longer feeling like I could coherently express myself was devastating. No matter how comfortable people tried to make me feel, I hated not being able to meet friends for a pint, speak to my family on the phone or read the child I often babysit for bed time stories. Like panic attacks, the more I worried about it coming on the sooner my lisp and nasal voice made an appearance. Frankly, I stopped enjoying socialising which meant I stopped enjoying life.

I mention this in today’s post as, for the first time in about a year, my voice has become affected again. So far, it has only come on briefly and if I take a mestinon it stops for a while.

Last night was my work’s leaving do and it came on a few times over the course of the evening. Some of my work pals and I stayed over together, and this morning my voice was still changing sporadically. This is yet another thing to raise with my consultant on Monday – I’m hoping it is a side effect of being run down from the chest infection. No other possibility is being allowed to cross my mind right now.

Today’s photo is my lovely workmates and I last night. They gave me a wonderful send off, in spite of my vocal issues, and I know it won’t be the last fun we have together.

22/365 – Girls gone wild

During this period of rest between jobs, I’ve been keeping myself busy with bits of work, volunteering with Childline and Myaware and trying to get myself as strong and healthy as possible. A key reason for this drive to get fit is because I’m going to be doing the Camino De Santiago with Elaine, and hopefully some of our friends, this May.

Today, I spent time doing another thing that’s been keeping me sane during my break from work – I went to the cinema to see Wild. If you’ve not heard of it, Wild is Cheryl Strayed’s true story. She walked 1,000 miles on her own, from the Mexican border to Canada, to deal with the grief of losing her mother, her subsequent drug addiction and the guilt over the breakdown of her relationship with her husband. As you can imagine, aside from Reese Witherspoon’s raw and powerful portrayal, the film’s concept has got me rather excited about our trek this spring.

Let me first tell you about why we decided to do the Camino for the first time last year. Last Christmas, Elaine and I bought each other flights to Santiago de Compostella without giving the logistics of what we were doing much thought. We had both wanted to do at least a part of the Camino for years – me since watching the film about it, The Way, and Elaine since hearing about it at church.

When I got my diagnosis of MG, I felt the desire to go become even stronger. I had something to prove to myself – I needed to know I could still live fully and challenge myself physically and psychologically.

If you haven’t heard of the Camino de Santiago, it’s a pilgrimage to Northern Spain that started in the Middle Ages. The idea back in those days was that you started your journey to Santiago de Compostella (where it is believed St James is buried in the cathedral) from your front door, however now there are many established hiking routes including the Portugese way and the French way.

Last year we walked the last 120km
of the French way – from Sarria to Santiago. Along with many other glory hunters, we joined the groups who had been walking for months for the final stretch of the journey and it is one of the most amazing things I’ve ever done. We met people from all over the world with fascinating stories to share, got the buzz from achieving a really tough physical challenge, had too many blisters to count and saw a beautiful part of Spain that we probably would never have visited otherwise. I also used it as the first stage in my staggered triathlon to raise funds for Myaware, which felt fitting as the reason I had finally pushed myself to do it was myasthenia.

In preparation, I went out hiking from January onwards with my friend Keith, tried to walk as much as possible in my day-to-day life and even dragged my brother out on a mammoth trek one weekend in Edinburgh. The one bit of prep I didn’t do was training with a full backpack on – big mistake. Still, my back has nearly recovered. I also bought cheap shoes – even bigger mistake. My feet still hate me and can’t believe I’ve signed up to do it again this year.

Physically, the hike was challenging but I believe that was due to my poor shoe choice. While my muscles felt equipped to deal with the 20ish km stumble, my blistered feet did not. By the end we were being over taken by elderly ladies, chihuahuas and snails.

Psychologically, the trek was incredible for me. I never allowed doubt to creep in, I gave my mind space to wander anywhere it liked, I handled the challenge of being around all kinds of dogs (I have a dog phobia) and I felt mentally cleansed at the end of it.

When your daily routine is eat, walk, eat, read and sleep in the quiet wild, with the sound of frogs and birds singing as your constant companion, it’s hard to imagine that you’ll ever be stressed again.

This year we are doing a shorter walk – the first stage of the French route from St Jean Pied de Port to Pamplona. It’s 60ish kms, about half the length, however it is in the Pyrenees so the terrain is more intense. Whether I do the pass over the mountains will probably be down to how fit I’m feeling at the time and how the weather is. But, at this point, I want to give myself the best chance of being able to conquer the Napoleon pass (the French general and his soldiers used the route).

The satisfaction of completing physical challenges like the Camino is something I’ve always enjoyed and I was delighted to find out last year that I was still capable of achieving such a feat.

Today’s photo is from my night walk around London. Stay tuned for more news about the Camino and about other physical challenges I have for this year.

I leave you with this quote from Cheryl Strayed from her book, Wild: From Lost to Found on the Pacific Crest Trail.

‘I knew that if I allowed fear to overtake me, my journey was doomed. Fear, to a great extent, is born of a story we tell ourselves, and so I chose to tell myself a different story from the one women are told. I decided I was safe. I was strong. I was brave. Nothing could vanquish me.’

21/365 – Damn you chest infection

So I’m about to finish a course of antibiotics today and my chest infection lingers on. It’s the first experience I’ve had, since upping my immunosuppressants, of the dreaded lingering infections. Perhaps I’ve been a little too blasé about it. Today’s photo is me after yoga – probably shouldn’t be doing that with a chest infection. Whoops.

I went to get my bloods tested last week and got a call from my doctor the following morning asking me to come in as my white blood cell count was high – normally what happens when your body is fighting infection. I’d been feeling a bit under the weather for a few days, sore throat and chesty cough, and my doctor thought it best that I go on antibiotics.

Now I’m almost a week down and I do feel better but the cough bit hasn’t shifted. I have an appointment with my consultant on Monday, who will no doubt lambaste me for not taking it seriously/dealing with it sooner as the doctor and pharmacist have done already.

The thing I’ve found most frustrating since starting the immunosuppressants is the constant runny nose – no matter what I’m doing, the drip drip drip lingers like an annoying younger sibling you can’t shake (I can say that – I only have an older brother so I am that sibling). In the most romantic moments, when I’m slow dancing with my other half in our living room to one of our favourite records, I’ll ask her to hold that pose while I run to blow my nose. Nothing says ‘kiss me now’ like a snotty face.

Sounds like nothing, right? Well it’s bloody annoying and the worse part is I’ve become hyper sensitive to the number of ill people around London. I’m terrified that my puny immune system is a magnet for bugs.

The truth is I’m not sure whether the immunosuppressants are doing much good for me at all. I felt better when I was just on the steroids and mestinon and I’ve managed to get my steroids down to 10mg a day. Never mind the fact that I can’t go out in the sun without factor 50 on or go swimming in open water because of the weird bugs I might pick up – I’m fed up of the constant sniffle. I’m just hoping I can convince my consultant that my body is ready to get off them.

20/365 – Rare Disease Day

Rare Disease Day is coming up next month, 28 February, and I’m going to be helping Myaware try to give myasthenia gravis a publicity boost.

Why is raising awareness important? In my experience, around nine out of 10 people I’ve spoken to about my MG have never heard of it. I’m not just talking about lay people – many medical professionals I’ve spoken to since being diagnosed have had no knowledge, or very limited understanding, about the condition. This includes people working in eye hospitals, opticians and doctors. These are the people who are responsible for recognising the condition and diagnosing it and their lack of awareness is a big problem.

QUICKER DIAGNOSIS
By improving the general population’s awareness of myasthenia, Myaware is trying to educate people to recognise the symptoms. Quicker diagnosis means quicker treatment and getting on top of the symptoms early is key to having more control over them.

This is an international day of celebration and awareness raising. It is a big chance to shout out about myasthenia gravis and I’ll explain how you can get involved below.

Myaware estimates around 10,000- 12,000 people in the UK and Ireland have the condition, however local authorities don’t seem to hold data about the condition (my partner spent a lot of time on FOI requests). This is one area where charities like Myaware or Muscular Dystrophy could be campaigning for more to be done – regional data would be very useful to help understanding more about the condition and any changes over time.

FUNDING
With more awareness, it would also be easier to get businesses involved in corporate sponsorship. As any of you who have done sponsorship activities know, it’s difficult to raise money. The Myaware fundraisers work hard to raise cash and this funds research, information conferences, support groups and the general running of the charity. But imagine if there was less need for individuals to fundraise because businesses were coming to the charity after reading/hearing about the condition. While that might be a pipe dream, at least if people in business corporate social responsibility teams have heard of MG, they may be more willing to open discussions with the charity. This can only be a good thing.

PUBLICITY
As I’m working with the Myaware team to put together a press releases for local and national press ahead of Rare Disease day, I need case studies about people living with the condition in the UK. For anyone who knows the media, you’ll know the more interesting your story is the more likely it is to be published. I know the thought of being in a newspaper is embarrassing, however, by allowing your story to be told, you would be helping raise awareness about the condition. This means you are essentially making life easier for future generations of myasthenics. So, you could consider yourself a myasthenia superhero! If you think you would like to get involved if you can contact me on laurnacr@hotmail.co.uk or email Sarah Hindley on sarah.hindley@myaware.org.

HOSTING AN EVENT
Looking at the Rare Disease Day website, it appears there are a few events happening including parliamentary receptions at the House of Commons, at the Scottish Parliament and at the Welsh Assembly. However, for those of us unlikely to be invited along to any of these events, hosting an event could be a good way to celebrate the day and get a bit of publicity in local press by letting them know what you are doing. I’m going to ask via the Myaware Facebook group whether anyone would be up for meeting in London on the day, but if stay elsewhere perhaps you could consider organising an event of your own?

PHOTO
The day website is encouraging people to take photos of groups with their hands raised. If you could get a group together to do this and share it on social media with the two hashtags #rarediseaseday and #myastheniagravis you’ll be raising publicity. If you can do it with a Myaware t-shirt on, or something to shout about myasthenia like a sign, that would be even better. The more people who do this on the 28 February, the more awareness we raise.

TWEET TWEET
As suggested above, if you can tweet on Rare Disease Day with #rarediseaseday and #myastheniagravis you’ll be raising awareness about the condition. You could share experiences about what it’s like to have MG or simply link to Myaware’s website.