238/365 – Upping my prescription

In my experience, a day that starts with a doctors visit is rarely great. But the outcome of my trip on Friday set me up for a cracking last day at work before the Bank Holiday weekend. 

I had spoken to my consultant a few weeks ago about the possibility of being able to get a longer prescription – starting with two months and hopefully building up to three. He said I needed to sort it out with my GP and that he couldn’t help.

I hadn’t realised that I’m already on a two monthly prescription for all of my medications except the immunosuppressant and I expected a tough sell for that. Especially as I had been made to go for a blood test by the same doctor the week before.

It wasn’t the battle that I was expecting; that might have had something to do with being the lovely drs first patient of the day. She was initially reluctant, but when I promised to do six weekly blood tests, she agreed. I’ll just need to remember to it now, thank goodness for calendar reminders, or the prescription will go back to one month. 

 

237/365 – Flu jab and myasthenia 

It’s getting to that time of year again – the air is that little bit cooler, it’s been raining more often than not in the last few weeks and people have started sniffling again. Those of us on immunosuppressants are looking at everyone suspiciously – keeping back and waiting for a telltale sneeze, cough or husky voice. 

One way to stop the cold hating mania is to get to fly jab. I got it for the first time last year amidst all the hype about it being the wrong strand of flu. Either way, I wasn’t sure about whether I would be able to get it but my consultant encouraged me it was perfectly safe. In fact, it was recommended due to the aziathioprine which is lowering my immune system. One thing he did say is that I may feel weakened for a couple of days afterwards, which thankfully I didn’t.

While I had no shortage of chest infections, I can say I didn’t get the flu last winter…then again, I’ve only had it once in my life. The possibility of picking up a strain may seem slim, but I’m going to book myself in shortly to get the jab redone.

 Please do let me know what recommendations you’ve had around the flu jab. 

236/365 – Choosing a run over a beer

Today I chose a run over a pint or two in the most boring decision of my adult life. My colleague is going on secondment for a while and the usual suspects headed to our local to wish him well. 

As I stood at the bar, I was full of conflict. As I watched my colleague taking the first sip of her pint, I imagine how good my first sip would taste after a full on day. At the same time, I could feel my trainers kicking me through my rucksack while shouting ‘Oi, no, it’s only 10 days until you have to run a 10km and you’ve not done a proper run in a few weeks’. My trainers won the fight – probably because they were kicking me. 

While I really didn’t feel like it, I’m glad I got some miles in tonight. It was only when I started running that I realise I had only had one mestinon all day – what often happens on busy ones – but my body held out fine over the 8km. After this weekend, it’s unlikely I’ll do another long run before the 10km so the fact that I did near the distance comfortably was reassuring. High on my healthy choice, I even went to the gym afterwards to do some boxing. I’ll need to make up for all this clean living over the Bank holiday weekend. 

235/365 – Free travel on London transport with myasthenia?

I’ve heard it a couple of times now from people at Myaware meetings – if you have myasthenia, you can get free Transport for London travel, called the Freedom Card. I’m torn by the prospect.

After rent, travel is the second biggest expense in London and there have been many times that I’ve considered cycling or running to work just to save the £120+ a month. When I first moved down and was completely skint, I would regularly wait at the travel card machine panicking that my bank card would decline (it did several times but not always thankfully). Now, I’m in a better financial position but I’m trying to save and travel costs are the first thing that I’d cut if I could. 

The freedom pass disability eligibility is the following:

  • Blind, or partially-sighted, or
  • Profoundly or severely deaf, or
  • Without speech, or
  • Have a disability, or have suffered an injury which makes walking more difficult
  • Have no arms, or have a long-term loss of the use of both arms
  • Have a learning disability 
  • Have been refused a licence on the grounds of your disability

That clearly covers a lot of people with myasthenia – particularly the bit about walking being difficult.

The prospect of getting a free travel card because of my MG is an easy solution, right? Wrong. Mainly because I’m not sure I deserve it. There are days that walking is hard or my double vision makes travelling difficult, but there are other days where I am well enough to run into work. 

I can understand why people that are unable to work because of their MG should be entitled to it and I can see the case for people with mobility issues, but personally I think I would feel guilty taking it. 

I work full time, earn more than the average wage (although I doubt more than the average London wage) and am able to get around ymost of the time (when I’m struggling, the last place I want to be is the underground…if only there was a free taxi pass).

Before anyone jumps on the defensive, this is not meant to be a reflection on anyone else. I think it’s absolutely right that this is an option for people with myasthenia, I just struggle to see how I deserve it at present. As TFL is a publicly funded body, I would feel guilty and worry that I was depriving others who need the support. 

234/365 – Three years of love and support

Yesterday was the three year anniversary of Elaine getting conned into being my girlfriend. While it falling on a Tuesday wasn’t ideal, we decided to make the most of it…starting out with me accompanying her to get a small medical procedure done. Nothing says romance like a deathly pale face and a look of terror in the eyes. 

While we did a bit of celebrating in the evening – dinner at a restaurant we’d always wanted to try and a cocktail – it will probably be the medical procedure and the recovery time that is most memorable. 

Elaine now lets me look after her when she’s feeling fragile and likewise I let her care for me when I’m struggling to function with my MG. While we are opposite ends of the spectrum in some regards, we’re alike in that allowing ourselves to be  vulnerable doesn’t come naturally. Yet, in the last year, I’ve allowed Elaine to wash and tend to me while recovering from a thymectomy and she’s allowed me to nurse her while recovering from surgery for a cyst. Neither of us are nurses by nature, but we enjoy looking after the other precisely because we know it’s a rare privilege bestowed only on the worthy. 

Looking back at our three years together, two and a half of which I’ve had myasthenia symptoms, Elaine has been an absolute rock every step of the way. She has provided laughs when desparately needed, asked questions when I’ve not had the strength, provided hugs on tap, compliments and reassurance when I’ve felt like nobody could possibly be attracted to me and most of all, a kick up the arse if I’ve appeared to be slumping into self pity. 
As we sipped our gorgeous cocktails in the red light of the Arts Theatre Club last night, I couldn’t stop thinking about how I can’t wait for another three years with this beautiful woman. 

233/365 -Stories of people with myasthenia at university – part 3 getting diagnosed in first year

When Celestine Fraser went to university in 2013, she couldn’t wait to get started and enjoy all of the fun and experiences that students are meant to have. But her symptoms of myasthenia, which she hadn’t been diagnosed with at that point, hit her hard. At this crucial point at the beginning of her time as a student, her university failed to support her, even saying:

‘students don’t drop out unless they have cancer’

She said:

‘Soon after starting university, I became extremely ill with bad fatigue and after a few weeks of term I could hardly walk. The uni was totally unsupportive, doing next to nothing to help me despite it’s supposedly supportive college system they have there. 

‘I was even (brutally) told by the head of my subject dept that ‘students don’t drop out unless they have cancer’. 

Celestine left, planning to go back the following September, however the university again failed to support her so she cut her losses and joined another university elsewhere. 

‘I thought it’d be easier to cope in a big city with public transport/ taxis etc so in Sept 2014 I started again at a London uni, studying English Lit with Film.’

In her second term, last year, her diagnosis changed from Chronic Fatigue Syndrome to MG. 

‘I managed first year and am going into my second year in a couple of weeks! It was super hard to cope, but it is possible. I managed to re-arrange my lectures and seminars so there weren’t too many in a row/ each day. 

‘The Disabled Student’s Allowance provided me with a certain number of taxis to get to and from classes. I also got essay extensions and extra time in exams. I got through the year and made some wonderful friends but my uni experience was far from typical.’

Celestine had to go home every weekend to rest and recover from the previous week. After classes, she’d go straight back home to bed and during MG flares, she would miss several weeks of classes. Her mum helped with the shopping for the whole week and re-stocked her fridge and she hardly read any of the books for my course as just attending classes wiped me out for the day. 

‘Despite all of this, I became a master at bluffing my way through seminars, despite having read none of the texts.’ 

 Thankfully, Celestine’s new university has been supportive and kind. And she’s figured out a few tricks for getting by. 

She said: ‘The academic side is definitely difficult and every day was a huge battle but it is possible, so have hope. You can get by doing the bare minimum, despite what the lecturers try to tell you.’

 I’m just amazed that unis can treat disabled students so differently! 

The social side of university is where many a student tale comes from, but Celestine didn’t manage a single night out last year.

‘I definitely felt I was living a slightly different life from everyone else (in bed by 9pm in freshers’ week!!) but I doubt I actually, really, missed out on much. 

‘My symptoms get worse when I drink, but the main thing is I couldn’t stand up/ dance for any length of time. The main thing I found difficult socially was being honest and up front with the people I met. Most of us with invisible illnesses don’t ‘look’ ill or disabled, so people find it hard to actually believe you when you say you can’t join them for drinks/ go shopping/ etc because you ‘have this muscle thing’. 

‘Students are mostly young, so obviously you (wrongly) assume your contemporaries to be fit and healthy. MG certainly killed some of the spontaneity and fun of being young and at uni in a big city, but it doesn’t and shouldn’t stop you from having genuine and meaningful friendships.’

232/365 – Pushing the cycling distance

With only two weekends left before our 60 mile cycle between London and Eastbourne, Elaine and I decided to get out early on Sunday for a long cycle. We planned to do 40 miles between our house at St Albans, and set off at 9.30 into a stuffy summer morning. I love being out at that time in the morning as the roads are quiet and there’s a sleepiness hanging over the city still. On Sunday, it wasn’t just the city that was sleepy – I struggled to get started despite getting more than 8 hours sleep on both Friday and Saturday. 

Thankfully the first section was flat as we headed down to the canal in East London through the Tottenham Marshes and near the Lee Valley canals. Stopping in Waltham Abbey (where I’m pictured above) for a look around, my energy levels were still low so a coffee and some food were devoured in the sun. In retrospect, I’ve realised that I need a more substantial breakfast before setting out in future. 

The next stage was a lot easier after this nourishment – we headed along the Lee Valley canal path to Broxbourne and then headed in land on quiet country roads. After the flat terrain of the canal paths, Baas Hill and the roads that followed were a fun challenge. We were making better time now too without having to stop constantly for pedestrians and runners. 

Sadly, it wasn’t long until the rain started and it went from drizzling to pouring in what felt like seconds. At this point, our route took us off road and onto dirt paths through woods and on rough paths along fields. I’m sure it would have been beautiful on a dry day, but given how heavy the air was I kept waiting for the crack thunder. Thankfully it never happened – nor did I spot one of tornadoes that had been forecast although when I started to feel tired I was having fun imagining different ways to escape one if I did spot one on the horizon.

Drenched right through, the ride  stopped being fun and at the proposed last stop – at Hatfield – we decided to call it a day when we found out trains here went to our local station. Before catching a train, we dried off as best we could in the local pub and got ourselves a wee warmer to put some colour back in our washed out faces.

All in all, we managed around 32 miles in around 4 hours. While this felt like an achievement given the climate and terrain, it was just half of what we’ll need to do in a few weekends time. 

231/365 – Picnic in the sun

Despite the baking hot sunshine in London today, which led to several cancellations from people who find their myasthenia flares in the heat, the Myaware Young Generation picnic went ahead at Alexandra Palace.

The idea behind the picnic was that family members of people with myasthenia could come along to meet others in a similar situation and trade stories and tips. While no children of people with myasthenia made it along, one mother did and Elaine was representing the other halves. As always at these meetings, it was helpful to share tips, to hear other people’s experiences and to point out the discrepancies between different treatments. Myaware’s Sarah also brought some doughnuts which were much appreciated – as was her presence given the 6.30am start from near Birmingham. 

While it would be easy to be disappointed by the small number of people, given the temperature and the slightly out of the way location, I’m glad that a few of us made it along to support each other. Also, I must apologise for my pose in this photo – was doing my best ‘act natural’ impression.

230/365 – Sharing blood 

In my title, sadly I’m not talking about sharing blood in terms of giving it but rather sharing blood results. I’ve had a nightmare Friday so far all because my consultant and doctor don’t share blood test results. 

Last week, I had what felt like pints of blood taken for my consultant. Yet today, when I went to the doctor to discuss my prescription, I was told I needed to have more blood tests done before they would give me a new prescription. Not only that, but I have to go to a hospital 30 minutes walk away to get this done. Why did I walk you ask? Well annoyingly the buses between my surgery and the hospital have not been running properly today so I was forced to walk in 24 degrees baking sunshine to get there. 

Although it is my fault that I’ve left it late to pick up my prescription, life would be so much simpler if there was a system in place to share blood test results etc between the specialists and GPs. I’m going to push for this arrangement when the new London nurse is in place. Do any of you have an arrangement like this that works?

Still I mustn’t complain, the wait for blood tests has only been 25 minutes so far so I might get to actually do some work today. I’m hoping the buses on the way back are working so that I don’t have to walk all the way back to surgery to pick up prescription. Whinge over…for now.

229/365 – London picnic tomorrow for families with myasthenia

If you’re free and around London tomorrow, there is a Myaware picnic at Ally Pally for people with myasthenia and their families. Kicking off at 12, it’s sure to be lots of fun and hopefully will help make the loved ones of those with MG feel they have a support network.

Sadly my parents have gone back to Edinburgh now, but my London family, Elaine, has kindly offered to come along with me. 

Tomorrow is meant to be a scorching 29 degrees, which sounds great but for some with MG this spells trouble as they weaken in the hot weather. However, don’t worry – Ally Pally has an indoor cafe and a bar with shaded outdoor seating so there are options to keep you cool in the heat. 

 
Hopefully I’ll see some of you tomorrow but if not I’ll share some pictures of the day in this blog over the next few days. Have a lovely weekend!