June | 2017 | the myasthenia kid

I wrote in my post entitled “Hello darkness my old friend” last month on how I was getting Ptosis pretty much on a regular basis. It’s not as bad as it was in 2007, when I had it for 9 months solid but the amount that it is occurring is bothering me. It’s happening to some extent on a daily basis and when it’s full blown it is causing me quite a lot of pain.

The pain is in my forehead and in the back of my eye (right side, the same side as the ptosis). I remember it being painful in 2007 but I don’t remember it being this painful and painkillers don’t help at all. For the last three days solid it’s been a constant battle to keep my eye open. Once the eye closes completely that is when the pain begins. It feels as if my forehead is being sworn in half with a blunt implement. Then the pain behind my eyeball starts. I remember having headaches with it in 2007 but it was always at the end of the day, never as soon as the ptosis started.

Last week I’d had a few days clear of ptosis (if you wondered it’s pronounced toe-sis, the P is silent) and hoped I was now seeing the back of it for a while. Only to be bitterly disappointed on Sunday when it appeared out of the blue again.

It stayed for the rest of the day having arrived at around 3pm by 18:30 my forehead felt as if it was being crushed between the jaws of a vice, so I gave up and went to bed.

Monday morning I woke up and it was gone, I breathed a sigh of relief however in just a few short hours, I could sense that my eyebrow and eyelid were starting to droop. I get a strange heavy feeling when it’s starting, once this happens it can be anything from 30 seconds to an hour before it drops completely. Quite often this heavy feeling will be accompanied by an altered sensation in my face, as if I have a dental anesthetic wearing off. Once the ptosis has come on fully the jangling nerve feeling goes but will come back when my eye opens. I managed to capture the photo below just before the ptosis kicked in. You can see that my eyebrow has already dropped and my left eyebrow is starting to arch in a vain attempt to pull the other eye open again.

Within three minutes of the photo above being taken my eyelid and eyebrow had completely dropped.

I took some medication to see if that would open my eye and resolve the ptosis, it took well over an hour for it to work and then only lasted for two hours. I ended up going to bed in the afternoon as the pain in my forehead was savage.

Out of all my various symptoms ptosis is the one that annoys me the most. You maybe reading this having never experienced Ptosis and thinking “what’s the big deal?” If that’s the case I would ask you to tape shut (with medical tape not sellotape!) your eye for day and see how you get on. How bruised are your arms after losing the sight in one eye? How easy is it to perform tasks where depth perception is required? (Do not drive if you decide to try this!) What I don’t have for you is a way to give you double vision in the eye that isn’t taped shut, nor the feeling that your forehead is being torn in half. When it’s bad like Sunday and Monday, I can’t watch the TV or use my computer. The only thing I can do is lie down, listen to the radio or audio books. The whole thing makes me feel very unwell, the medication I take to resolve it can also leave me feeling pretty rank.

At the moment I am having to avoid long periods of time using screens as this is a trigger, I have no idea why. I am also having to limit my physical activity levels as not only am I get ptosis but I am also getting very weak muscles, that will shake and refuse to move. Walking when bad can feel like I am having to throw my leg forward from the hip-joint. Its most bizarre. Thankfully though, this week I have an appointment with my consultant and for the first time with him and in years I am going to bring up Myasthenia Gravis (MG) again. It is always scary bringing this up after what I have been through before when all the tests were negative, yet there seems to be more acceptance these days that there are patients who are seronegative (show no antibodies). Maybe it will be better received this time? It’s the chance I have to take. Is it so wrong to want to know what is causing the ptosis and what can be done about it?

On a lighter note I submitted a photograph I had taken into a competition for a local magazines Facebook Banner. The winning photograph will be displayed on Devon Life’s banner throughout July. I have until 1st July to get as many votes / likes as possible. So if you are on Facebook just click on this link and it should take you right through to my photo Link Here

The photo is the one below, it’s called Woodbury Common by Rachel Morris-McGee. Then all you have to do is hit the like button! Many thanks x

I’m just going to break rank and say it, something that us Brits are known to do which is to complain about the weather, here goes……..It’s too darn hot!

Now for those of you who experience really hot temperatures in the USA or Australia for example must be laughing your heads off, as our heat wave temperatures are nothing compared to yours. Most temperatures in the last 6 days have been above 30 degrees celsius (86 fahrenheit), this is a rare (ish) event in the UK with average June temperatures normally being around 21-24 degrees celsius (69.8-75.2 fahrenheit). It’s also all about what we are used to and we Brits are not used to this at all.

I have been suffering since last Thursday as my blood pressure decided the best thing to do when faced with this heat was crash. When I eventually bothered to measure it, the first three times my blood pressure monitor read error, which means it’s too low to read. When I did get a pressure (probably because I was getting stressed from it not measuring it) it read 83/50. No wonder my heart was going like the clappers every time I moved let alone went from sitting to standing. I ended up spending one day in bed, whilst I waited for my medication to kick in. I had to re-start taking midodrine, a medication I don’t like taking because of the awful side effects I get with it but nothing on the side effect front compares with not being able to stand without fainting. At the moment it’s a case of the lesser of two evils.

It’s not just me that is struggling with the heat at the moment, my poor pooches are miserable with it. On Monday afternoon I was very concerned about Frankie, as although we had been inside all day he started to seem quite agitated, he started pacing and panting very heavily. Thankfully there had been lots of information shared on social media and I suspected he may be starting to suffer with heat stroke. I immediately started wiping a wet cloth over his belly, Weimaraners are pretty much hairless there and then I poured cool water over his back. He stood there and let me do it, which is most unusual as unless it’s a really muddy, yucky puddle on a walk he won’t go anywhere near water.

On Tuesday I decided from around 11am onwards that I would cover him in a wet tea towel

And that worked a treat he was much happier. The girls however were a nightmare and point-blank refused to have anything put on them. As soon as I put a wet tea towel on them they would stand up and shake it off. So I decided to make a bandana type thing for them out of wet tea towels. As they have quite big necks it took a couple of attempts to get enough slack in the tea towel so I could tie it safely around their neck.

So the above photos show you how I folded the tea towel to accommodate their neck size.

They will tolerate these, it’s great as you can just take them off and get then get them wet again whenever you need to. Plus they can wear them when out on their walks and it helps to keep them cool.

The wet tea towel bandana dog fashion as modelled by

Mollie