After managing to successfully step down my steroids last year to a very small daily dose, last weekend I decided it was time to do the same for immunosuppressants. It’s a bigger deal with aziathioprine as my tablets come in 50mgs, so taking one tablet away means cutting out a third of my dose.
For those of you who don’t know, aziathioprine, originally used for cancer, works by reducing the profiency of the immune system (the T and B cells of the immune system apparently). Because of this, taking it increases the risk of picking up infections and viruses as your body’s defence is weakened.
I’ve been swithering about stepping down for a while due to concerns about the long term risks. Not to mention the fact that I want to visit South East Asia this year and am concerned about having a suppressed immune system in a new climate. Ideally by the time I go, I would like to be on a low dose if not off it completely. One step at a time though as it has helped keep me well and healthy of late.
I’ve been waiting until I felt strong enough to do it. Weighing myself last week gave me the final push as the dose I was on was related to my weight around this time last year. As I’ve lost a few kilos since then and have been feeling stable for months now, the time is nigh.
The first week has had its ups and downs – I’ve had an upset stomach, felt run down (due to picking up a cold passing around the office) and I’ve taken the exercise regime down a few notches to give my body a break. My sleep started out not great, but is now back to normal, and I felt quite sick in the first few days of the reduced dose.
Having been consistently fine since early January, my right eyelid started drooping again. Whenever I’ve changed medication doses this has happened, but I wasn’t expecting it with aziathioprine as it normally takes time for anything to happen with this drug.
It’s almost a week since stepping down and I’m feeling strong again. My eye’s back to normal and tonight I’ve completed a tough workout. While I’ll be paying close attention over the next while to how my body is behaving, I’m hoping that the worst is over.
While researching a timeline of myasthenia Gravis that I’m putting together, I came across an interesting quote about it from the start of the 20th century.
Until the 1930s, the treatment for MG was described as a ‘source of disencouragement to the patient and a cause of nightmare to the physician’.
Disencouragement wasn’t all it said – one of the forms of treatment was also avoiding excitement. Although at that time, myasthenia wasn’t necessarily a death sentence, avoiding excitement sounds like one to me. People confined to dark rooms for years on end – worried about laughing too much or even forgetting what laughter feels like. It made me incredibly grateful to be alive in this day and age.
I know the reality for some people now can be like this in fluctuations – it can feel like all the things that bring enjoyment make the MG worse. But, with modern medication and research always trying to improve that, most people I’ve met with MG are able to build a life where enjoyment is not ruled out. So we are lucky.
The recent discussions about TV show the Undateables, specifically the rugby player with Tourette’s and aspergers, have got me thinking this week and ready to try a little experiment…
First of all, I am allergic to the term Undateable due to the suggestion that those with disabilities are inferior to ‘dateable’, read normal, people. Being ‘Undateable’ is subjective – some people wouldn’t be who I would choose to date but others would.
If anyone ever suggested to me that I was Undateable because of myasthenia, I would question whether being shallow and rude makes someone a better catch.
However, from what I can see, some of the show’s participants feel that they are undateable and that’s a really sad statement about the society we live and love in.
It made me think about what dating is like now and whether people with disabilities like myasthenia are at a disadvantage. In the swipe left culture of dating apps and websites, where matches are selected entirely based on looks, where does that leave people with disabilities who want to date?
I’ve heard many friends’ stories about their frustration with online dating for this very reason, but I think it goes deeper than the shallowness. Love is rich and complex, whereas dating seems to be just complex with a lot of waiting to see whether that person they went on one date with, who has a spark of potential, thinks they’re good enough. Unless you check every box, there is the possibility that there is always a better choice out there.
Anyway, now for the experiment. I’ve decided (if Elaine will let me) to put a symptomatic picture up on a dating website to see what the response is like. It’ll need to be one of the free ones as my budget for this is zero but I’ll keep you updated.
Do you have myasthenia and any dating stories to share?
Just under a year ago, I wrote about getting my hair cut and, as you can imagine, the barnet has got a little out of control in that time. I had a window to sort it out yesterday and visited a hairdresser I haven’t gone to since I was a teenager.
Back in those days, I would ask my mum to take me to the top salons for my latest style. Be it a messy bob, a crop, a flash of red or a full head of highlights, having a good haircut was important to me.
This isn’t only because I was a frivolous teenager – I had very unruly thick hair which made me self conscious. Getting the must-have poker straight look of the time was impossible and that made it a talking point for others (exactly what you don’t want as a teenager). After years of trying and failing to follow the fashion, I gave up and did a Fleetwood Mac (went my own way).
It sounds like such unimportant drivel now, but as a teenager it was a big shift. Experimenting out on my own – trying to find who I was and wanted to be. Realising that nothing was permanent and that if something didn’t work it wasn’t the end of the world. Realising that other people’s opinions didn’t really matter when they were concerning my appearance. Happiness and value had to come from within.
Since then I have gone through a range of life experiences and often feel like a stranger to my younger self. But yesterday I felt close to her as I sat in the chair looking at my face self consciously. I even felt a little jealous and inspired by her daring and swithered about asking the hairdresser for something radical. Except that my mum doesn’t bankroll my hair cuts anymore and so a cut and blow dry was as far as my budget would stretch.
You see for the last few years I’ve had the same cut and part of that is vanity around the myasthenia. I’ve swithered about doing something different but always panic about whether it will accentuate the eye symptoms. Having it shorter again, which is always what I’ve been drawn to, would draw attention to my face and thus my eye. Plus styling can be difficult when I’m feeling fatigued as my arms can feel heavy and tired. The lowest maintenance possible the better, has been my reasoning.
But in the New Year I think I’ll do something different. I’m not sure what yet, but I think it’s time to challenge those fears and the vanity.
On Christmas Day I was having a chat with my cousin who is also on immunosuppressants for a different reason – excema. As she has moved onto a different type, we began to discuss our experiences of aziathioprine. This led us to the ultimate question – has it treated the MG successfully?
Yeah I think so. I’ve been on a very low dose (2mgs) of steroids for months now and take little mestinon so it is my main form of treatment. I do have fatigue days occasionally and readers will know that my eye ptosis (droopiness) fluctuates, but my MG feels stable and relatively predictable.
Influence of the thymectomy?
I do wonder how much the stability has to do with the thymectomy – I guess there is rarely one answer for conditions like this stabilising. Medical staff say it can take years for the full affect of the thymectomy to be realised and things have definitely been more stable after my recovery.
As I’ve written about previously, I’m keen to lower the dose of aziathioprine to see how my body reacts. I think this will be when I really feel how much the drug has helped make the condition manageable. I wonder if the reduction will impact me gradually as it takes a long time to kick in.
No response to aziathioprine
One of the research projects Myaware is currently funding is looking at early signifiers of people who don’t respond to aziathioprine. As the drug can take a long time to make an impact, if any standard early signifiers can be found it will be helpful as clinicians will know to try another form of treatment.
How many times a day do you discount yourself because of something that can’t be changed? During one of my conversations at Christmas, my cousin asked a question where I automatically ruled myself out due to myasthenia.
We were speaking about journalism and my cousin asked if I had ever or would ever try to do news presenting on TV. While there are many reasons that I haven’t in the past and won’t in the future, I automatically jumped to ‘I can’t because of my wonky eye’. I want to believe that it isn’t true – that anyone who wants to be a broadcast journalist, or any equivalent where they will be in the public eye, with the right training can. I’ve never done any broadcast journalism and have never been interested in doing any. But when you look at who is currently presenting news on TV there is a lack of diversity when it comes to disability. The lack of role models is a problem.
Without positive examples, I wonder how many other people believe that they would not be able to do a similar role? There is work needed to ensure that people with a disability are given more exposure in the public eye so that there are role models for the next generation.
It’s amazing what three days off can do if you don’t really have anywhere to be or anything to worry about. This weekend of quality time for Elaine and I was well needed in the build up to crazy season. What I didn’t realise was how much I needed a break just for myself. A chance to sleep for more than 10 hours a night, have afternoon naps and take everything at an easy pace.
Over the last few weeks, despite taking it pretty easy with the nights out and getting lots of exercise, my eyes have slowly getting affected again by the myasthenia. Thankfully I’ve not had bad double vision, but typically it looked at its worst on the day of my work Christmas night out. While I’m used to them acting up, it’s also a little frustrating when this happens when I want to feel and look good.
That self awareness continued into this trip. But, as if by magic last night after a few drinks with my girl, my eye is suddenly better. The rest and the lack of stress clearly helped, and on this occasion a drop of whisky did too.
After a lot of fresh, cold, air, and possibly in the aftermath of last night’s drinks, I’m feeling exhausted today. As we walked through the airport, I had to drag my legs and use a trolley to put my weight on. But after a good sleep again tonight, I’ll feel ready and able for the last push to Christmas. I can’t thank Elaine enough for giving me that space and time to recover.
In my 50 blogs to go post, I put out a call for any subjects I hadn’t written about and a reader suggested tackling the topic of sweating and myasthenia.
Here’s what I’ve found out: it’s a common discussion topic for people with myasthenia. Forum after forum comes up about this so you are not alone.
The neatest explanation I can find is that profuse sweating is one of the side effects of the medication you may take, mestinon.
This is far too much information, but why change the habit of a lifetime: I’ve always been a bit sweaty so it’s hard for me to tell the impact that mestinon has had. Both at work and in my spare time, I tend to run on high adrenalin and that’s normally enough to give me a rosy glow (and sweat patches).
I’ve always thought it was due to having a high metabolism – my core is usually ‘nuclear’ according to Elaine. But when reading about this, I do think it has become worse since starting medication. I say this as sometimes I can be doing absolutely nothing, free from any kind of stress, and be in a sweat. Others have commented that they get sweaty when they are pushing themselves too hard – the body trying to keep you cool in amongst all the effort.
I also recently read this Women’s Health article about why people sweat in different ways and it explains a bit of the biology behind why we’re all different.
One thing I have changed recently is the times I take mestinon. Like caffeine, I don’t take mestinon after 5pm as otherwise I have difficulty sleeping and, more relevant to this post, I am in a sweat for most of the night.
Another thing I try to do is carry a spare top and deodorant with me. When I’m feeling uncomfortably sticky, having a change with me is a great relief.
Does anyone else have any tips or insight to share?
It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.
Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on):
- Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
- Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process.
- Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow.
- Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
- Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
- If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
- Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive.
- Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
- Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
- Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.
That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.
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.