I climbed a mountain (yes, really)

I didn’t blog about MS in 2016 because, well, MS bores me. I’d like to forget about it. Still, as 2017 is now well and truly underway, I have a few updates to add to this online record of mine.

My MS was stable in 2016

Symptoms remain and yes, some days were a write off. But my third year with MS was better than the first two. Win.

But side effects from MS medications were a nightmare

There is a difference between MS symptoms and side effects. And for me, 2016 was the year of side effects. Actually the middle six months of 2016 were a clusterf*#k full of side effects.

One year into treatment, Gilenya (my first MS medication) turned on me. Four months later (after one skin cancer scare, one trip to the emergency with suspected liver damage, complete skin breakdown and an all over body drug rash all chalked up to the drug) my neurologist and I decided to switch.

Switching MS medications is… unpleasant. But in this case, necessary.

I switched to Tecfidera, another oral drug which comes with a host of new side effects. But almost three months in, I am over the worst (or perhaps I am just over the embarrassment of flushing bright red for hours each day).

And in late 2016 I climbed a mountain

I am not a hiker, but my partner Jay loves it. Camelback Mountain in Phoenix Arizona is his favourite hike. So, in December 2016 (Phoenix is a desert: no hiking for me with MS there in spring or summer) Jay helped me reach the top.

It took me more than twice the time he normally takes to do the entire hike just to reach the summit (it ascends 1,280 ft, from 1,424 ft above sea level to 2,704 ft), and then of course I had to get down. But it was worth it.

He also filmed me doing it. He’s the best.

And as for blogging in 2017…

I’m hoping to be well, with nothing to record. So hopefully there will be nothing.

MS heat sensitivity: Travelling to a hot, dry climate

Heat sensitivity is one of those weird entries in the long list of MS symptoms that seem unimportant. Unimportant, at least, until you’ve experienced your body shutting down around you after you overheated or because of a quick change of temperature.

Truth be told, I was worried about the heat in Phoenix: very hot, very dry, and chronically low humidity. I’m pleased to report that after five nights in Phoenix, I’ve experienced nothing more or less in the heat than everyone else suffering through +107F/+43C temperatures.

Of course, my two previous heat sensitivity incidents (one in a hot bath in Berlin and one on an overcrowded tram in Melbourne) were prior to taking a disease modifying therapy (DMT). I’ve now settled into my Gilenya treatment, and I can only assume Gilenya is the reason I avoided a third meltdown. I also made sure to use my common sense: I stayed away from direct sunlight and I didn’t exert myself.

Still, I count this as a travel victory over MS. Next stop will be Thailand in September. Then we shall see how I (and my trusty Gilenya) go in tropical heat and humidity.

Traveling with MS: My new emergency kit

The impact of heat

I am currently fit and healthy, and about to spend two weeks in the United States meeting my partner’s family. It will be a time to remember.

But MS has the potential to get in the way during my first visits to Phoenix, Arizona and St Louis, Missouri.

Many people with MS have a degree of heat sensitivity, and experience suggests that I am particularly sensitive to changes in temperature. Lets face it, I’m the girl who almost passed out in a hot bath in Berlin and on a crowded tram in Melbourne because my system shuts down when I heat up too quickly.

As of right now, Phoenix is 43°C (that is 110°F). That is a good 8°C more than I have let myself go anywhere since the tram incident.

With MS, anything could happen. And so I am taking what precautions I can.

My emergency guide to travelling with MS

Nothing in my emergency kit is going to stop me from having a relapse or an exacerbation, particularly if I overheat. But if my healths takes a dive, these things might help.

My little red kit includes:

  1. My disease modifying drug of choice, Gilenya. I have enough for the duration, as well as a few stashed away in different bags in the event that I lose some. Given the heart rate complications of the drug, Gilenya is not something that I can miss.
  2. A letter from my neurologist. Gilenya costs around $62,500USD per annum in the United States, and it is not something to lightly carry through customs (although it is significantly less fraught than travelling with injectable MS therapies). This letter is also going to help if I end up in the hospital (for MS, or due to some other random event).
  3. Travel insurance for MS. For the first time, my annual insurance now includes a premium for MS related issues. God knows if this will actually be effective, but I’d be an idiot not to have it.
  4. My Medic Alert bracelet. I don’t wear this normally, it is for emergency use only. But if I were to become sick or disoriented (like that time in an airport I missed my flight), I can wave this around (or more likely, my partner can wave it around as I may not be moving my arm at that point) to receive help.
  5. Just-in-case Prednisone. If I have a relapse, the thought of seeing yet another neurologist when in a distressed state is not appealing. Depending on what my symptoms are and whether I am mobile, I will just get on a plane and head back to Melbourne to see my neurologist – an option far cheaper than the medical system in the United States. But in the meantime, or in the event that I do see a neurologist and don’t like his treatment advice (as happened in Sydney), I can start the Prednisone myself.
  6. Relevant contact details. I have the business cards of my neurologist and MS nurse, and they are also loaded into my phone and that of my partner.
  7. Additional incidental drugs. For those one off occurrences and to address a variety random MS symptoms.
  8. Hand sanitisers and wound disinfectant. I – and just about everyone who travels – always carry hand sanitisers anyway,  but now they take on a particular importance. My immune system is compromised due to the Gilenya, and any inflammation or sickness can trigger an exacerbation of my symptoms.
  9. Vitamins. Strictly speaking, these aren’t for an emergency. But I take them every day, they are part of my health routine, and they are coming with me.

And of course, there is good old common sense. I will not go into direct sunlight. I will stay hydrated. I will not attempt to climb Camelback Mountain in Phoenix (and I will regret every moment not doing so). I will conserve my energy.

And I will damn well enjoy myself.

Post script: I do not advocate anyone with MS randomly treating themselves with Prednisone if they feel unwell. My neurologist gave me the script to use in case of a genuine emergency where on the spot and/or effective treatment was not available. Hopefully, I never use it and I end up carrying the script around until it is out of date.