Tag Archives: health

Going to hospital in Buenos Aires

After a frustrating discussion with travel insurance as I wrote about in the previous blog, I went to a Buenos Aires’ hospital to get help for my increased myasthenia symptoms.

As you can imagine, going to a hospital in a country where you only speak ‘un pocito’ of the language was frightening. I don’t think I’ve ever had such rapid deterioration and I had no idea of how to explain this or even if they would know of the condition.

Luckily, we found a private hospital where they had staff who could speak English. We went to the emergency waiting room thinking we should follow the same process as at home, but we were quickly redirected to the neurology clinic. The receptionists, although baffled by our ‘Spanglish’, were quickly able to establish that I needed a translator. Because it was so late in the day after all the messing around with the travel insurance, the translator had left however one of the staff members spoke enough English to help us.

Less than an hour after arriving, I was sitting in front of an empathetic neurologist who was telling me to relax and that I was in safe hands. My condition was explored and my symptoms documented – then the normal tests of muscle strength were carried out for the whole body (holding legs up, pressing up with arms, scrunching up facial muscles etc etc). The checks were more thorough than any I’ve had at home.

Having established that the flare up was only affecting my vision in terms of muscle strength, I was taken for blood and urine tests. The final tests were from a lung doctor to test if my breathing had been impacted. That was an interesting experience and not one I have had before – blowing as hard as you can into a piece of equipment like a breathalyser is bloody difficult. It gave me a lot of sympathy for anyone with asthma as apparently they have to do these tests regularly.

Finally I was asked to go back to speak to the neurologist. She was able to tell me within two hours of doing them that I didn’t have an infection and then we worked out a plan for my treatment.

The doctor prescribed me to increase my steroids to 10mg a day and two mestinons a day. If this had been in Scotland, I would have been disappointed to be jumping back up on the steroids. But when I was handed the prescription, I felt such a relief that I could have cried. I probably would have if I wasn’t so exhausted – by this point I could hardly keep my eyes open. And that night, for the first time in almost a week, I slept right through and woke up feeling a hundred times better.

I returned to the hospital for check ups after this and was given the same level of excellent care and support. Not only that but when I left, I was told if I needed anything to get back in touch and given the names of neurologists in the next place I was going.

While I know I was lucky to be near a capital city like Buenos Aires when this happened, I was very impressed by both the standard of care and the cost of the treatments. It may have been my travel nightmare up until the hospital, but as soon as I was in that neurologist’s consultation room I felt in safe hands.

The picture for this blog was taken outside Manzana de las Luces in Buenos Aires where I did a tango class a few days after the increased meds kicked in. Since those few days at the hospital, it’s been back to having fun and trying new things!

163/365 – Setting goals and myasthenia gravis

I am the type of person that does better when I have a goal. From  school to university, in my hobbies and now at work, having something to aim for has always helped give me a sense of purpose. I know each small step gets me closer to something – each one moves me forwards and onwards. 

Setting goals can be a challenge with myasthenia. The unpredictability of the condition – the inability to know how your symptoms will be from one day to the next – makes calculating what you are capable of, and how much you can push yourself, difficult. Today I think I could cycle 30km and enjoy it – tomorrow I may be exhausted by 3km. Sure there are factors that help or hinder this, but often it feels out of my hands. For a goal focused person, this is a challenge. 

Thankfully, I have good days and bad days. So much depends on how my body is responding to my medication and, at present, I’m having good and bad days in equal measure. I know that on good days I’m capable of doing almost anything and, at this point in my life, there are enough of those to still aim big. Accepting this, I have adapted to the fact that longer term goals are better than intense short term ones for me now. I think this is a healthier attitude and my changed attitude is another thing I can be grateful to myasthenia for. 

I’m currently setting objectives at work and, thank goodness, these are spread out over a year. At present, I’m also re-evaluating my fitness goals for a couple of events I have coming up and changing my nutritional goals. I’m also living the medication goal of being almost steroid free and that long term goal helps me with the tough days.

For all of these goals, my mantra is ‘It’s a marathon not a sprint.’

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.


47/365 – Full thymectomy vs keyhole

I was asked a little while ago, by one of the women I interviewed for Rare Disease Day, about why I had gone for the full thymectomy. It seems fitting to write about it this week as it is my six month scar-iversary.

From my initial appointment with mr consultant, he stressed that I should start thinking about having a thymectomy. Feigning interest, internally I dismissed the suggestion. There was enough to process without having to factor in going under the knife and spending a week in hospital. I had work to consider and my job has always been a top priority. I had all the fitness challenges I had planned to get through. Then, on top of the inconvenience factor, there was the fear factor. The operation would have to wait until it fits for me, is what I thought before moving on.

However, like many things in life, I wasn’t really in control of this decision.

The more I palmed mr consultant off at our appointments, the more insistent he got that I needed this operation (and to put my health first more generally). I couldn’t help wondering whether he was putting my health first. It all felt a bit experimental – up this drug here, have this cut out there. And of course it is experimental because how can it be anything else when there is no proven cause for myasthenia.

The following picture, by Myaware, shows the location of the thymus.

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The charity also gives the following description on its website: ‘Hormones produced by the thymus gland are thought to affect the immune system and the neuromuscular transmission although the exact role in Myasthenia Gravis is not completely understood.’

Before I knew it, I was booked in with a surgeon to have a discussion. What’s the harm, I thought? It’ll probably take months for the appointment to happen and then there will be a waiting list the length of the country to actually have the surgery. Not so much. I went along to see the surgeon who told me I could have the operation the following Monday if I liked. I told him I would need to think about it. And didn’t until I was practically told I would never get better without it.

In the mean time, I went along to a Myaware Young Generation meeting and had a chat with one of the lovely ladies there. She had the full thymectomy in a rush because she had a thymoma, a tumor on the thymus gland. However, she said if I was actually going to go for it, I should consider keyhole. It was the first I had heard about the option of keyhole surgery for this operation – why after my consultant speaking about it many times, and seeing a surgeon, was this the first time I was hearing about a much less traumatic option?

I did my research and went back to my consultant prepared. However, his argument for the full operation made sense. He said that in some instances, the keyhole surgery can only remove part of the thymus and the patient then has to undergo the full operation anyway to remove the whole thing. This means putting your body through the added trauma of an extra operation. So it was a simple choice really.

Should it have been? Although the following is based on a small number of conversations I’ve had, it’s true to my observations thus far and I would be keen to know if you contradict/fit with what I’m about to say. From the people I have spoken to that are in remission, all have had keyhole surgery, whereas I’ve yet to meet someone who has gone into remission from the full thymectomy. A few people have told me they have gone into crisis mode or had a significant relapse after the full operation.
I’ve yet to hear the same about keyhole. This suggests to me that if more finance is spent on developing techniques to ensure the thymus can be taken out through keyhole, remission rates could increase. As I say, it’s not scientifically proven and I definitely want to be proven wrong (or right) with empirical evidence.

Anyway, I went for the full operation in the end (tonight’s picture shows nearly the full length of my scar) and prior to it there was a discussion about dissecting the thymus to see if it revealed anything. I got excited at the prospect of this ‘medical research’ into my personal condition and looked forward to feedback – the only information provided so far is that it had been a bit more active than it should have been. I’ve been discharged by the hospital, although I may have to go back due to my superhero powers.

But for now I’m left wondering if I made the wrong decision not pushing for keyhole – perhaps this is as fruitless as worrying about a cause for my MG. People who have had either type of thymectomy – please do post comments about your experiences.

17/365 – A break from my health kick

So this weekend I made the conscious decision to have a break from the healthy eating, exercise regime and no alcohol. After a positive week of sticking to a low calorie, nutritious diet, no booze and regular exercise (2 gym sessions, 1 hot yoga class, a 15km cycle and a 10km walk) my achy body told me it needed a break. When feeling this way, the relaxation tips discussed on 15/365 can come in handy.

My ridiculously healthy food shop for last week:

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On Friday night, I said goodbye to my healthy week with a conditioning session at the gym followed by some Mexican food and a well deserved glass of Bordeaux. Both the fajitas and the wine tasted so much better as a treat.

On Saturday, after a very chilled morning, I watched my first premier league match – Tottenham Hotspur vs Sunderland. From my previous experience at football matches in Scotland, I was a tad excited about destroying the ‘my body is a temple’ regime with a pie at half time. However, it seems pies don’t fit with the American-style fare on offer in London – all they had was hot dogs. Disappointed doesn’t begin to cover it.

To make up for this failure, on the way home we picked up some chips and had homemade fish and chips (and a giant pickle onion for me) to line the stomachs before my first proper break with the booze ban – Elaine’s cousin’s leaving do. We also managed to make a dent in that bottle of Bordeaux between the two of us.

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Sticking to the red wine, we worked our way through some Syrah at the party – but after a glass my body started to warn me that my overindulgence was a little too much, too soon. Still, after living very quietly since my best friend’s birthday the previous weekend, it was fun to be out socialising, having a dance and meeting new people. Unfortunately, my right eye had closed a little which made me more self conscious, as discussed previously, but Elaine’s family were warm and welcoming.

With a foggy head on Sunday morning, I decided it was time to get back on the no alcohol and healthy eating regime. After traipsing around the shops for a while at the Westfield centre in Stratford, I was tempted by a Costa coffee. My sweet tooth got the better of me and some mini muffins were scoffed. Yet, funnily enough, my nutritional breakdown on Sunday is the closest I’ve been to my diet app’s daily target, My Fitness Pal, since I started using it.

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Overall, the break from the linseed and squats has been good as my body feels better rested and ready for the tough schedule this week. After reading about an interesting study, I’m also going to try eating within a 12 hour window this week.

I also found this article , about what the world’s healthiest diets have in common, an interesting read

I think the ‘everything in moderation’ principle is going to be a winner for me over the next year and I must remember that means including some of the ‘naughty’ things I enjoy. Without those treats, life becomes a bit dull.

15/365 – The Theory of Everything

If you are having a woe is me day over the next few weeks, I’d recommend going to see The Theory of Everything at the cinema.

In case you haven’t heard, it’s about Stephen Hawking and is truly inspiring. We’re all familiar with Mr Hawking as he is today, but the film shows his journey, together with his first wife Jane, from being diagnosed with motor neurone disease as a 21-year-old post graduate student in Cambridge.

Motor neurone disease, like myasthenia, is a rare condition where parts of the nervous system become damaged. Unlike myasthenia where antibodies attack the muscle and nerve junctions, MND affects motor neurons which control voluntary muscle activity including speaking, walking, swallowing, and general movement of the body. So similar muscle activities are affected but usually the muscles waste away with MND which leads to disability and eventually death.

Stephen was given two years to live when first diagnosed but rose to every challenge with courage. At 73, he is still working and has no plans to retire.

While the film does show the psychological challenges of having such a condition, and the strain it puts on relationships, what shone through for me was his determination to find happiness and the fact that he never lost his sense of humour.

Some people think being happy is something that is out of their control but I have long disagreed. It’s about attitude – deciding that you are going to work hard at being happy by being content with what life offers and, most importantly, not comparing your circumstances to others. I cannot know what goes on in someone else’s life – I’m lucky to have people who love me, to have had opportunities in life and to have the excellent NHS staff to help keep me healthy.

Today’s image was me cycling to get blood tests before going to see the film. My doctors make sure I get them regularly to monitor the immunosuppressants.

I leave you with this quote from Stephen in the film when describing his theory about life:

‘However bad life may seem there is always something you can do and succeed at. Where there is life, there is hope.’

For more inspiring quotes from him, follow him on twitter @stephenhawking_

12/365 – Forgiving my body

Yesterday we touched upon the importance of forgiveness, but I wanted to go into how it relates to MG today.

As Louis Zamperini showed in his ability to do this for the camp guards who oversaw his horrific treatment as a prisoner during WW2, forgiveness is the only way to find peace with the past, and for the present and future.

No matter what you have to let go of, we all know the actual act of forgiving something or someone is a lot harder than simply talking about it. It requires courage to not allow the negatives in life to shape us and it requires a huge heart to make peace with someone who has let us down. But what about when your own body requires forgiveness?

If you are diagnosed with a condition like myasthenia when you are young, you may feel you have been robbed of certain experiences that your peers may have. Learning to forgive, whether it’s the family member that passed on the hereditary MG gene or your own body for turning on itself, is essential for coping healthily with your condition. It’s the only way to move beyond the grieving process and figure out how to make the most out of what you’ve been given.

I know this because it took me several months to forgive my body for what it had inflicted upon me. When I first found out, I felt sorry for myself and reverted to smoking quite heavily having given up for months. I also drank like a fish, worked all hours, ate a lot of junk food and stopped exercising. I told my body that if it could turn on me, then I was going to see how it felt when I reversed the cruel treatment.

However, doing this while starting on medication didn’t work so well. I believe it took a lot longer for the drugs to start working fully because of the punishment I was inflicting and within 3 months my right eye was completely closed and my left was 3/4 closed. Not to mention the fact that my speech and swallowing were still affected. My right eye has never fully recovered and I often wonder if it ever will.

So what helped me to forgive in the end? Time definitely helped, as did
being able to speak to people who love me and others with the condition about it. Finally, the realisation that made me stop behaving like my own worst enemy was that my body is a pretty incredible machine. I realised I should be thanking it for withstanding all the abuse it had taken and for reacting well to the drugs when given a chance. My body also waited until I was mature enough (excluding those first few woe is me months) to handle MG – I can’t imagine the added struggle of getting the an MG diagnosis during my angsty teen years.

I’m truth, I am able to live a full life, with the help of modern medicine, and it has gotten a lot more rewarding since I chose to forgive my rogue immune system. I never did a make up free selfie last year because I couldn’t face it at the time, but today I forgive my body enough to post this one (it helps that my eyes look near normal today and I have a post workout glow)

What a difference a week makes:

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9/365 – Father and daughter time

One of the hardest things after being diagnosed with MG is telling your nearest and dearest. There are certain things you need and want from them, and, in those early days of darkness, it can be easy to forget that they are also coming to terms with the news.

The people who took it hardest were my parents. My MG isn’t hereditary, as many people ask, and they had worked hard to instil a love of nutritious food (although passing on their sweet teeth and love of vino) and regular exercise. The photo from today is my dad and I after a speedy walk to see a cross country race in Edinburgh – despite turning 70 this year a day is still wasted for him if there isn’t exercise in it.

Despite being raised in poor, by today’s standards, working class families, neither of them have had serious health problems. So the lack of an obvious reason why I’d developed MG nagged at them both.

Supporting me as she always has, my mum went into practical mode and helped with the research that I initially struggled to motivate myself to do. My dad wanted to keep a check on the emotional side of how I was coping, while desperately trying to figure out a plausible reason for me.

Since then, he’s had numerous theories about the why, which I’ve expressed is something I’m unlikely to ever find out, and he’s kept tabs on how I’m really doing. Today, as always, he told me to make sure I’m drinking enough water to ‘flush the drugs out’ – I haven’t had the heart to tell him if I flush them out I’ll be struggling to speak, swallow and see again. He also was asking about my next appointment with my doctor, saying I needed to push him for answers about why the thymectomy hasn’t worked. Once again, I explained it can take 2 years for the full effects to show.

While the theories and questioning can be frustrating at times, I force myself to remember that this drive to get to the bottom of my MG comes from his desire to help me find a way to live a full life. He wants a cure for me and if my parents love could make one it would be goodbye myasthenia.

6/365 – My second home

For the first time in six and a half years, my second home is not work as I’m freelancing while waiting for my next job to start. It’s also not somewhere cultural or exciting – like an art house cinema, the football stadium of my favourite team or my local pub with a crowd of mates – as I would have hoped it to be in my younger years.

Since being diagnosed with MG, I
find I spend a good chunk of my time either at the doctors or the pharmacy picking up prescriptions. It’s not that I mind the time and effort – my doctor surgery is very flexible and, at the moment, I have a bit more freedom about when I can pick things up. I also could do with being more organised about bulk ordering them – another one of my 2015 resolutions.

What I did mind up until very recently was the expense. For a whole year I was totally unaware that I could get a medical exemption certificate for having MG until my tenacious mum did some research for me.

Questioning why my aunt got free medication for a thyroid problem, she did some online digging and found that I could also get my treatments for free.

My doctor, my consultant and my surgeon had failed to inform me of this and, sadly, it was never raised at any of the young persons MG meetings I attended. Perhaps I overlooked it written somewhere obvious, but how many others in the UK are doing the same right now?

I worked out that with prescriptions for 4 different drugs, bearing in mind I started them at different times, I could have saved myself at least £250 in 2014.

While I can’t say I enjoy visiting the pharmacy, I like it a lot more now that it doesn’t eat into my wages every month. Get in touch if you haven’t heard about this exemption before and I’ll send you across the information I have.

5/365 – Sick day

Although I didn’t want to admit it yesterday, the bug that was doing its rounds with my family and friends over New Year caught up with me today (no doubt partly due to over exertion and sauna time yesterday)

I used to be more resilient, but sadly the drug that suppresses my immune system has made me prone to picking up a dose of the cold. Saying that, due to keeping pretty fit, and eating a lot of nutrients/vitamins, I don’t tend to get anything worse than the unpleasant mild symptoms.

The worse part of getting a cold is it flares up my MG symptoms. Today things are the same with my eye tosis and eyes out of line. My vision was a little double first thing this morning, but it rectified itself quickly. However, I noticed at the height of my sniffling this afternoon that my capacity for swallowing was a tad effected – there were a few stray dribbles down my chin. Thankfully, I didn’t have to leave the house today.

Tonight my lovely other half returned from working away so that, along with a batch of chicken noodle soup and getting cosy on the couch while watching Star Wars, has made me feel less grotty.