84/365 – Small victories

Today was meant to be the start of my refocus on the exercise regime, gluten and dairy free diet and cutting down the amount of hours spent in the office. It didn’t start too well when my body refused my orders to get up this morning. After a shower and some healthy breakfast, I finally managed to get myself moving. As I walked to the bus stop, via the doctors for a prescription that had been sitting for a week, I realised I had a bit of energy back. In fact there was almost a spring in my step. When did all these cherry blossom trees on our road start flowering, I wondered. I felt ready and almost energetic – I could definitely do this. 

At lunch I made my weekly abs class (read torture session), followed by a quick run and body weight circuit. I had sushi for lunch and stuck to two cups of coffee. It was all going so well. 

Then I realised just how much work I had to do on top of an hour of e-learning for a course I’m attending tomorrow. Before I knew it, it was 9pm, I had munched through a bag of hula hoops and two mini cakes and I was about to attempt running part of the way home (in the blustery rain in the short shorts seen above).

I managed 3.5kms before deciding to call it a night. But, on a positive note, I made it to Wholefood superstore on the way home to get some healthy supplies (and avoided picking up the beer and banoffee cheesecake that were calling my name).

Some days you just have to celebrate the small victories like how much stronger I feel today compared with yesterday. 

83/365 – A royal crash and burn

After a hectic six-day working week, Elaine and I decided to get out of London and go for a walk in Windsor today. Although the wild wind was making the rain whip hard against exposed flesh, we decided to wrap up  and brave the elements. With only two months until the Camino de Santiago, getting ourselves physically prepared is becoming a matter of urgency. 

After a longer lie than anticipated, we decided to drive to Windsor and set off from there rather than the previous plan to catch a train to Sunningdale and walk to the queen’s home town. After a walk to the castle we set off via Eton. Right away I could tell that it wasn’t a day for long distances. My legs felt like lead and like they give way under me, my temperature soared almost instantly and my head went fuzzy. As predicted, I had overdone it and knew I needed rest. I pushed on for a while hoping I would get a second wind but it never came. By the time we reached Windsor after turning around about 5 miles in I according to Elaine I looked like I was ‘dragging my knuckles behind me’. She dragged me into a cafe to get a sugar boost and we ended up treating ourselves to afternoon tea. The rest helped, but I didn’t have energy to keep walking after our break.  

With a four day week ahead, and one of those days spent at a training session, I know it will be a much easier week. But for now, it’s time for this tired body to curl up and hope for more energy tomorrow.

82/365 – Empire State of mind

The myasthenia gravis community has gone wild this week. Why? Because we’ve made it to the big time – ain’t no stopping us now, we’re on the roof (Woahhh, why is there two of everything up here?) MG joke…double vision…anyway moving swiftly on. The TV show that has taken America by storm has given one of its main characters Lucious Lyon myasthenia gravis. Can you freaking believe it? Very exciting (as I hope you can see from my face above).

A friend of mine was down in London on Friday and was full of beans telling me about it. It’s a hip hop soap opera which is apparently incredibly addictive. She said it’s the new (better) Glee and I’ve got to say, the way she described the show sold me too. 

Myaware posted an interesting article about the fact that the main character had been misdiagnosed and (spoiler alert) in the last episode finds out that what he actually has is myasthenia gravis. The article suggests that there won’t be many exciting plot twists from him having MG but I think our community should come up with a few options for the show’s producers. 

I’m going to give the first series a watch and then reflect on all the ways MG could make the plot twist and turn. 

In the mean time, if any of you read about why the show decided to give one of their leads MG please let me know. Really intrigued about this point. I may try to get a quick chat with someone on the show about this once I’ve given it a watch. 

81/365 – Crazy busy week

So I’ve just had that week – the one where you’ve been so busy that it is a complete blur. Where caffeine, sweets and the promise of a beer at the end of the day get you through. Where you optimistically tell yourself that you will finish work on time every night and it never happens. Where you start to forget your name and how to do simple things like cook yourself a meal, tie your shoes and say hello to people. Where you look back at the end of the day and have no idea how you managed to fit in half the stuff you did or how you’re still going. Are you even still going, you start to wonder. Yes, you do start talking to yourself. 

The frenzy isn’t over for me just yet. I have a day of mostly work ahead tomorrow but then I will stop. I will sit back tomorrow night and wonder if I’m fit for anything other than sleep. At that stopping point, it will be interesting to see how my myasthenia gravis is affected. I feel like I’ve used up my spoons for a month. 

Right now – while I’m still going – my symptoms are not bad. Although I’ve reduced the steroids, when I had a few stress-release beers last night with my colleagues my speech was fine. My body is tired but it feels ok and my eye isn’t bad either although it’s started to tire this evening. Unfortunately, in my experience, it’s when I stop that the strain starts to show. At some point this weekend I’m going to treat my body for its resilience under pressure. Some sleep and healthy food are at the top of the kindness agenda. But for now I’m off to a comedy show with a beer in hand for some much needed light relief.


80/365 – ‘Stooning’ plates of meat

Last night I awoke with the strangest sensation. I can’t be sure exactly what it was but after a lifetime of my mum using the word ‘stooning’ I now know what she means. 

I woke up in the middle of the night with pain, except it wasn’t pain necessarily, in my middle toe on my right foot. As I discussed yesterday, I’ve had a full-on week of duathlon training so at first I thought it was my usual batch of middle of night cramp, as I wrote about here. I probably hadn’t drunk enough water to recover from the training so that was surely it, I thought. But as the sensation went on I realised I haven’t really had that kind of cramp in my toes before and I couldn’t be sure it even felt like cramp. It was a deeper sensation – like the bone itself was aching and vibrating.

I thought these weird aches and pains didn’t happen until later in life so I’m hoping this was a one- off snooze-time disturber. Needless to say, the broken sleep has left me feeling exhausted today with a very full work schedule ahead. Caffeine ahoy!

79/365 – The rise of the exercise idiot 

Strong title to match my feelings – I’m not sure about you but I’m fed up of hearing sentences like ‘if you don’t feel  sick you’re not doing it right’. This was uttered to me after a fitness class at my work gym and I almost screamed out loud NO. Just no. It’s not true – no one likes feeling sick so why relate something like exercise that should be nurturing with that discomfort? Because people love extremes and are always looking for a story to tell? That’s what I think is part of the problem when it comes to the latest lot of ‘fitness freaks’ hooked on heavy Crossfit lifts and pouting selfies before, during and after exercise. They don’t know when to stop.

When you hear comments like the one above it isn’t a surprise that there are concerns that the strong is the new sexy ‘movement’ encourages eating disorders. Particularly on Instagram, there seems to be a rise of people brainlessly writing messages like ‘addicted is just what the lazy call the dedicated’. The same wouldn’t apply for heroin would it. (I know, I know exercise is good for you…in moderation). #fitfam #fitness and #workout have around 135 million posts between them on the social media channel – while some of it is positive and encouraging, there is a section of the content that is just stupid and dangerous. Here’s a few idiotic images I found today:

   

     

So how does this fit for someone with myasthenia gravis? Well the culture of ‘if you’re not killing yourself, you’re not exercising in the right way’ is dangerous for anyone let alone someone with MG. As my consultant doesn’t give his opinion often, the fact that he recommends trying to keep fit is important to me. But learning my body’s limitations has taken a long time and I have definitely pushed it too far at times. Have I been influenced by the ‘exercise as torture’ generation? Yes I think I have been, but I vow to denounce it for what iris right now – stupid. 

Let me be upfront – I’m completely addicted to exercise (today’s pic is me lying outside my work after a lunchtime sprint session). It’s a bad week if I don’t get to do some kind of training four days out of seven and because of this I’ve learned to read my body’s state. When I’m physically exhausted, you won’t find me out running, on my bike or in the gym. I may be doing some yoga or Pilates to stretch out, but I try to do these flexibility sessions when I’m feeling strong enough to give them my best. In comparison to the stupidity of the comment above, my yoga teacher this week stressed the importance of listening to your body. That’s what everyone needs to do more of. 

Tomorrow I will have a day of rest after a full-on half week of exercise and I won’t feel bad about it. Knowing when to rest is one of the most important things you can learn on your myasthenia journey. If you are able to, and plan to, fit exercise into your life, I would recommend listening to your body over torturing it.

78/365 – How to ask a person about their condition

You would think having had myasthenia gravis for a year and a half  I would know the best way to ask someone about their condition. I don’t. This is mainly because I’m not sure there is a good way to ask.

First of all, if being asked about my condition has taught me anything it’s to figure out why I want to know before opening my mouth. If it’s simply out of curiosity or intrigue, I’ve made the decision not to ask.

People are naturally inquisitive and, as a trained journalist, I often find a probing question slips out before I’ve thought twice. But the impact of that question about the thing that appears different can be significant – it can change someone’s day. To have that kind of effect if a question is asked vacantly is a bit crap. 

So if I’m not asking out of curiosity, why am I asking? To offer support? Sometimes yes. The counselling I do for Childline has taught me the difference between empathy and sympathy so I believe I can be an empathetic ear if people seem like they want to talk about it. 

Sometimes it may be a desire to connect. Is that selfish too? Yes and no – as I mentioned here there is a lot to be said for being involved in a community if you have an illness like MG that not many people understand. Connecting with someone who can relate to some of your daily struggles feels good.

When I think about the difference in how I respond now compared to a year and a half ago when someone asks me about my MG it’s simply that I speak about it if I feel like it. The people I don’t mind speaking to about it have asked as part of a natural conversation – like when I’ve discussed my diet or medication. It comes up naturally often if people want it to so my advice would be not to ask out of the blue. 

77/365 – Does where you live affect your myasthenia?

While currently it’s an impossible question to answer in the UK, due to the lack of data collated, I often wonder whether where you live affects myasthenia gravis. I mean this in many ways.

Living conditions

As there is no UK-wide data collated for MG it is hard to know what affect where you’re born and raised has on whether you’re likely to get myasthenia gravis or not. Whether this affects at what age the condition comes on is also a mystery. It would be interesting to see a national breakdown on a map of people with myasthenia plotting the number in each council area/region. Once the researchers have this information it will be easier for them to dig into different trends.

I often wonder would my condition have come on so early if I didn’t live in polluted London and work in a high stress job? Then I remember that many people are much younger when it comes on and I was fortunate to have most of my twenties MG-free.

Diagnosis

From what I have heard from others with MG, where you live definitely can affect how long it takes to get diagnosed. First of all it depends on whether you have a switched-on GP – that can be an issue anywhere. The stage after that –  when you get referred to specialists – is where location can make a big difference. If you have staff in these hospitals/centres that are aware of MG, the diagnosis is likely to be quicker which means faster treatment. However, if you live far from one of the facilities where myasthenia experts are based it is likely to take longer. In this case, you can go through several different hospitals before getting referred to a professional able to treat you properly.

I’ve heard many stories of people waiting years to have their MG diagnosed after several misdiagnosis’. Most of the time they have ended up needing to be hospitalised for long periods of times – the disruption in a person’s life including job-wise and the expense on the NHS for prolonged stays like this are just two of many reasons to push for better awareness. In these instances, the local hospitals they have been referred to haven’t picked up on the symptoms and they’ve ended up having to stay in/travel to hospitals far from where they are based.

I almost feel lucky that it only took me six months to be diagnosed, although I know I shouldn’t. Let’s hope future generations are not saying the same thing.

Treatment

Do you receive better/different treatment depending where your specialist works? There is much discussion about a post code lottery when it comes to medical treatment and I wonder what extent that is true with MG. Do certain areas with more budget offer a wider selection of treatment options or do they try a new treatment more than once without deciding it hasn’t worked? From what I have heard, the answer is yes. 

You have the right to be treated wherever you like, but people naturally stick to the closest hospitals to where they live. While they are saving on travel time and expense, are they missing out on different treatment plans?

Utopia

Thinking about these factors it’s hard to pin where the best place to live is. In a city, you’re more likely to be served by a hospital with experts but in the countryside you’re free from the stress, pollution, and potential virus outbreak. 

I often think about eventually moving back home to Edinburgh, but wonder how good the care is up there in comparison to London. Would that be enough to stop me from moving? Probably not, but it will be enough to make me think carefully before threatening to leave the excellent care I’ve received in the capital.

76/365 – Going the distance

As you can see from the unattractive helmet photo, today I did my first long cycle of 2015. With the mini duathlon around a month away, I had been putting off getting out on my bike for a long haul spin until the weather was a bit warmer (and drier).  I am definitely a fair weather cyclist and have no idea how people can muster the energy in the freezing cold. 

With the sun shining, I decided today was right and Elaine and I managed 21.5kms in under two hours. We cycled to Regent’s Park and did laps on the quiet, scenic roads there. Considering the amount of stopping and starting that cycling in London requires, the time wasn’t too bad at all. 

  

Even more importantly, physically I felt and feel great. While my legs are tired, I think the strength and cycling work I’ve been doing in the gym has paid off. Not to mention the fact that I’ve had a very relaxed weekend. 

Last year when I started doing long cycles, my arms and legs would be shaky for at least a day afterwards. While I’m prepared for the doms (delayed muscle onset soreness) tomorrow, it seems my hard work has paid off.

Although the prospect of doing a 4km run before and after the cycle is still daunting, I feel more comfortable saying I know I can do it now. 

  

75/365 – Beginning of the myasthenia journey

As I mentioned in my eight ways myasthenia gravis has shaped me for the better post, being part of the MG community has helped me cope in many ways. On Thursday night, I went along to a Myaware Young Generation pizza making evening and it was great to get a chance to meet some new faces (as well as toss pizza dough in the air and eat far too many dough balls). 

The events I had been at up until Thursday had been dominated by women – perhaps because the condition tends to affect females at a younger age. However, I met two lovely men with myasthenia on Thursday evening. Both have had MG for a long time and were open about the trials and tribulations they have faced as we sent flour flying and slathered our pizzas in numerous toppings. 

I thoroughly enjoyed spending time chatting with them and think both should consider themselves role models, not just for men with MG but in general. I say this because they seemed very comfortable talking openly – an issue British men are notorious for particularly around health issues. As they have far more experience with the condition than I do, they were both supportive and empathetic when I was talking about my recent concerns. They provided advice and discussed gently things I should prepare for. It is this kind of peer support that is invaluable and they silenced any doubts I had about attending the event.

Speaking to them made me realise that, although a year and a half feels like a long time, I’m only in the very early stages of my myasthenia journey. With this in mind, I must continue to develop my Buddhist-like lack of attachment to the good times in preparation for the inevitable fluctuations of the future.

It also made me realise that developing lasting connections in the Myaware community is important as there will be times when others with MG will be best placed to offer support and advice.