290/365 – Home for a break

July was the last time I had a break of more than one day so I’ve decided to head home for a rest.
There has been a lot of hard work and hard play since our holiday to the Scottish isles and I’m feeling a bit burned out.

Physically I feel great and my MG symptoms are pretty stable, but my brain needs a bit of a rest and my motivation needs a boost. It’s got to the stage this week that I’ve had toast twice and porridge once for dinner and that really isn’t my style.So my plan for the next few days is not to have one. Other than my cousin’s wedding reception on Saturday night, I have absolutely nothing booked in and the thought of that fills me with sheer delight. I may even do a little dance.
It’s likely my time off will include a bit of catching up with family and friends, a bit of exercise and a bit of going for a walk around my favourite city and seeing where I end up. Or it may just be staying in bed, watching crap on Netflix and binging on my mum’s homemade soup. The beauty is in the not knowing.

289/365 – Home adaptions

Every morning when I leave the house for work I struggle to shut my front door. It’s the type that you need to slam to get the lock to catch. It has no handle so it relies on force.

I normally eat breakfast at work and take my medication afterwards, but this week I’ve had a couple of days of eating breakfast and taking meds at home. On both of those days I’ve had no issue with shutting the door. 
I didn’t realise it before but the issues I’ve been having have clearly been related to my muscle weakness caused by MG. Something as simple as a handle on a door will make my morning easier so I’ve contacted the landlord to ask for it to be done. 

This is a very minor issue, but it made me think about other home adaptions that people with myasthenia may need – in fact that I may need in the future. I feel it was important to acknowledge that this is partly about my myasthenia (mostly the crap door) and hopefully in the future I’ll be able to identify other things that can help make my life easier.

I wonder if any of you have had to make home adjustments due to your MG?

288/365 – Solving the unsolvable

On my first day of annual leave for several months, Elaine and I spent a chunk of it at Bletchley Park. If the name is familiar and you’re not sure why, BP is where the enigma code was cracked in WW2 by Alan Turing and his gang of geniuses. 

Enigma machines were used to encipher the content of Nazi messages and were thought to be unbreakable. In the museum, the scale of the challenge was stressed over and over again. The way the Germans used the enigma machines, which had been originally created by a Dutch company for the financial sector, meant that there were always 72 million million different combinations meaning not even the  collective brainpower of the smartest people in Britain could solve these puzzles without mechanical help. So, as anyone who has seen the Imitation Game knows, Turing and co created a machine to work through all the possible combinations and they cracked it. 

It made me think about the environment that is necessary to ‘solve the unsolvable’. Naturally in this blog, I’m considering how we find out what causes myasthenia gravis and how we cure it.

1. A lot of money

During WW2, Winston Churchill knew the value of code breaking and he ordered that no expense be spared to crack the enigma. With that kind of backing, the impossible was shown to be possible – with money to spend on trialling different techniques and scaling up the number of people focused on the task. While not all there for cracking the code, there were around 9,000 people working at Bletchley during WW2. That is obviously not the reality for myasthenia. 

As MG is a rare disease, curing it is not a matter of national/international importance. Research needs to be funded and there is constant competition for this money. So funding research is often left to charities like Myaware in the UK and the Myasthenia Gravis Foundation in America. That’s why fundraising and spotting opportunities to link charities to business for sponsorship is so important within the myasthenia community. The money you raise could help find a cure. 

On the other hand, even if a ‘cure’ is found, there is the question of whether the NHS would be able to afford to supply it. As discussed previously, there is research happening in Switzerland about a vaccine for MG. I’ve asked my consultant to look into it but even if it is found to be successful, whether it would be offered in the UK depends on funding.

2. People willing to take risks

The people involved in cracking the enigma code were willing to fail over and over again to find a solution. Like our modern day researchers, there was pressure on them to succeed but they didn’t let it stop them nor did Alan Turing seem to listen to the criticism.

When it comes to MG, you need both researchers and patients that are willing to take risks and push boundaries to help find a cure. That’s not an easy ask – it takes people who are willing to learn from failure.

3. Commitment 

Anyone responsible for creating something ‘unachievable’ has been obsessed in the process. Nothing less than obsession helps them push through the heap of others that have tried and failed. To allow something to become your obsession, it often needs to be personal – will this change your life or the life of someone that you love?

Most days I have a moment where I wish I had been more interested in science growing up. If I had been, I reason, I would be in a position to help myself and others with myasthenia. Bit of a jump I know and while it’s not too late, I doubt I will go back to re-train as a scientist. However, I believe the myasthenia community will benefit from the more young people with MG or who’s parents have MG that we can encourage to be scientists, doctors and researchers.

4. A bigger cause

As mentioned in point 1, curing myasthenia will never be seen as a national or international priority because it is one of many rare diseases. But could we have more success if we worked together with say all of the other auto-immune diseases on reasons why conditions related to the immune system are caused? Or clubbing resources to work on a cure? Now that would be of national significance. 

I’m sure there is ongoing work around this already, but as I said these are some observations about the climate for ‘solving the unsolvable’.

287/365 – Laughter therapy

This weekend my nearest and dearest friends descended on London to celebrate a birthday – Gem and Steph (the birthday girl) all the way from Edinburgh and Sarah from Southend. From when we sat down at our dining table in the Somers Town Coffee House right through to saying goodbye at the tube station on Sunday evening, we hardly took a breath.

We had plenty of time to catch up on all the news and plans while wandering around Primrose hill, Camden and how can I forget glamorous Milton Keynes. In fact we shared our first evening in Buckhinghamshire’s finest due to a gig by one of the birthday girl’s favourite bands. Testament to the spirit of the weekend, when we found out the band had cancelled a few hours earlier we still made the most of the night. We danced right through the replacement band’s set – requesting songs and sharing our best moves with a pumpkin. 

 It was unusual and bloody wonderful to have such an extended period of quality time together. I laughed pretty much straight through the three days and, in spite of the late nights, arrived back at work today feeling as fresh as a Daisy. 

286/365 – Gentle exercise without medication

Last week I completely forgot to take my medication when I got into work and ended up doing yoga without having any. It was only as my head was hanging upside down in downward dog during my second sun salutation that I realised. My gut reaction was shit, I should definitely stop and go take them. It would be the first time in at least a year that I had exercised without medication. But I was too curious. 

How was it? Suprisingly for me I didn’t find myself feeling any weaker – in fact I have occasionally been feeling a little sick recently when exercising (I think due to the high doses of immunosuppressant I’m on) and yet on this day I felt great. As normal, I was shaking in several of the positions where I had to hold deep, difficult poses. But as I looked around the room, I noticed I was surrounded by other shakers. In fact at one point the teacher was also shaking. 

I’ve always taken my medicine first thing in the morning as that’s what my consultant recommended. I used to love exercising first thing in the morning before breakfast but as I need to eat before taking medication I thought this was no longer an option. But this has made wonder about whether gentle exercise like yoga or walking may be better before breakfast and medication? 

285/365 – Desire and myasthenia gravis

According to Buddhism to desire something means that you suffer…and that’s why I’m not a Buddhist. Those following the noble path would say the desire to have keeps one in a state of dukkha – suffering – and that creates samsara – a cycle. Yet I find that when I really want something, I feel alive. My mind is focused, my body alert and each step I take is about getting me closer to the goal. To say it’s about chasing the next thrill or the next material object cheapens that beautiful, heightened awareness and focus I get when I desire.

So how does myasthenia gravis affect desire for me? In a few ways:

1) Fatigue dulls desire

There’s no doubt about it – when you’re exhausted, you have less energy to desire. It can dull desires and therefore dull the sense of being alive. Regardless what that desire is, being tired makes you focused on simply achieving the basics. Desire for sex, desire to learn something new, desire to help others – all of these things can feel like extras that you just don’t have energy for. When it comes to sex, it is particularly important to communicate with your partner so that they know it’s not about them. Read more about sex and myasthenia gravis here. 

2) The shift in desire

Because of the points raised above, the things you desire before may no longer feel as important to you. You may now desire simple things that you didn’t have to think about previously – basics like desire to have energy, desire to have strength and desire to sleep well. 

3) The pain of desire

It’s human nature to want what you can’t have and Buddhism can feel more relevant when you desire things that are no longer attainable for you. Particularly if these things were once not out of reach. 

Acceptance and refocus

The acceptance of these shifts when it comes to desire can be difficult, but it can also help you focus on what’s truly important moving forward. The key point is to save energy for those things that matter the most to you and things that keep you in a positive mood. I may desire working out every day (not often these days), but I know that it strips me of energy for everything else. So I allow myself certain times a week. By doing this I normally have more energy when I spend time with Elaine and also more desire for her. 

Consider what your most important desires are, which ones are good for you and how you can help yourself have more energy for these things. You may to have to let some of the lesser or more challenging ones go but it only means you’ll be giving more to the key things in your life. 

284/365 – Exciting line up at Myaware conference

Next month, people from all over the UK and Ireland will travel to Birmingham for the annual Myaware conference for people under 40. 

I wasn’t sure that I was going to attend as every weekend up until Christmas has something on for me at the moment and, just looking at the schedule, I feel like I need a break. However, the lovely community, Myaware’s Sarah and the interesting line up have convinced me to attend on the Saturday. 

The agenda is:

11am-11.15am: Coffees and Registration

11.15am-11.20am: Introduction and Welcome

Sarah Hindley, Regional Organiser, myaware

11.20am-11.30am: Icebreaker Session

Sarah Hindley, Regional Organiser, myaware

11.30am-1pm: Keynote Speech, including Questions and Answers

Dr. Fiona Norwood, Consultant Neurologist, King’s College Hospital, London

1pm-2pm: Lunch

2pm-4pm:Optional Workshops – see below

4pm-4.25pm: Charity Update

Ruth Ingledew, Chief Executive Officer, myaware

4.25pm-4.55pm: Tai Chi and Meditation for Myasthenia

Heather Lomas

4.55pm-5pm:Raffle results and close of day

Sarah Hindley, Regional Organiser, myaware

6pm-8pm: Dinner – thestudio

10pm: Taxis to the Eaton Hotel from thestudio

Optional workshops:

  • Employment, Finances and Myasthenia -Steve Bradshaw, Benefits Officer, myaware
  • ‘Mind over Matter’ – Robert Heaven, Counsellor, myaware
  • Managing Myasthenia Day-to-Day – Mary Quirke, Specialist Nurse, John Radcliffe Hospital, Oxford
  • Diet and Myasthenia- Farah Suleman, Dietitian, Queen Elizabeth Hospital, Birmingham

The weekend away takes place on the 21 and 22nd November. For more information, contact sarah.hindley@myaware.org

283/365 – The danger of hope 

Let me be clear – this post is about the danger of hope, and the unscientific bias it can create, for doctors not patients. In my view, people with myasthenia need hope as much as they need medication to keep fighting the condition’s fluctuations. 

I came across a fascinating article today, The most critical factor in medicine? Human bias, which gave me empathy for all doctors and in particular my own consultant. 

The author oncologist Siddhartha Mukherjee writes:

‘Every science suffers from human biases. Even as we train machines to collect, store and manipulate data for us, humans are the final interpreters of that data. In medicine, the biases are particularly acute, not least because of hope: we want our medicines to work. Hope is a beautiful thing in medicine — its most tender center — but it is also the most dangerous.’

While the article specifically focuses on the issue for clear cut research results free from bias, the above made me think that I have been harsh at times in my critique of my consultant. The criticism has been around his scientific manner and his seeming inability to provide comfort or support. Sure there are others who are able to do both, and that would be ideal, but the article made me think about how he, and all other medics, must feel each time they crush hope. It highlighted how hard that must be to get used to and that I do not envy them the task in the slightest.

At least as a patient, hope can get you through the dark days. What is it that motivates specialists? 

282/365 – Exploring green spaces in and out of London

I’ve got a confession to make: this weekend I’ve been quiet because I was so busy with work last week that I felt I needed a break.

So I got out for some fresh air both in London and in nearby St Albans to clear my head. I just couldn’t resist crunching around in those Autumn leaves.

On Saturday, I headed out with the lovely Kate to explore the Parkland Walk. The old railway turned nature trail runs from Finsbury Park to Muswell Hill. The first section of the walk made us feel like we were in the middle of the countryside and you’ll see why below.

We stopped at Highgate in a charity shop before taking on the second half. It was equally beautiful but sadly I was starting to tire a little due to the anti-biotics I was taking. I always feel exhausted when taking those.

While the effort was difficult, the views across London just as you reached Muswell Hill were spectacular. To recover, we did a bit more charity shop hopping. 

After a rest on Saturday night and Sunday morning, Elaine and I headed out to beautiful St Albans.

After exploring the former abbey and surrounding area, we walked to the park beside the Roman ruins and mosaics. The trees were all shades of autumn and I was delighted to have taken time out to breathe in the fresh, crisp air.

Again, I tired quickly and had to stop for some food at the cafe in the park. It didn’t dampen the experience however as I felt the slow and steady pace and regular breaks on both days allowed me to enjoy my surroundings. In fact, if I took anything from it it would be to slow down.

Thankfully I’m feeling a lot better this week – perhaps the clean green air helped the mending process.

281/365 – Emergency appointment

For the first time since spring, I’m back on antibiotics. My throat started to feel like it was on fire last night and, when it continued to feel that way this morning, I booked an emergency doctors appointment. 

Unlike last time, where blood tests and swabs were taken before antibiotics could be prescribed, my doctor took a quick look at my throat, told me it was very enflamed and sent a prescription directly to my pharmacy in under five minutes. 

His advice for pain relief was a first for me from a GP: Ginger or lemon tea and honey whenever possible. He also recommended avoiding dairy for the next few days. Lemon and honey would be my natural healers of choice but I’ve not had them recommended by a medic before.

I feel a bit indifferent about today other than a little disappointed as I was hoping to play some tennis over the weekend. Thankfully, I feel well enough for work as it is very busy at the moment and hope to kick the infection out over the next few days. One thing is for certain – it’s made me even more determined to reduce my immunosuppressants.