There are so many things on your mind when you make the life-changing decision to start injecting a disease modifying drug: how will I manage to inject myself every week? have you seen the size of that bloody needle? what will the side-effects be like? will this even work? Something like this affects your life in so many obvious ways that it can be easy to overlook some of the other ways that it will affect you.
Airports, for starters.
You can’t just put your syringes into your bag and check them because the liquid may freeze during the flight. This means that you have to take them through airport security as part of your hand luggage. When I first started injecting, I was told by my MS Nurses that I would need to make sure I had a doctor’s letter explaining the medical necessity and that I would need to ring each airline ahead of time to let them know I would be carrying needles on the flight. The letter was easy enough, but airlines always seemed to be a little confused when I rang and didn’t really know how to respond to my enquiry. Once, at Johannesburg airport, I was met at the gate by a wheelchair that was there to transfer me to my connecting flight to London. Somewhere along the line, South African Airlines had made the assumption that the fact I would be carrying medication for MS would mean that I would need help getting across the airport. They were actually a bit put out when I told them that I was perfectly capable of walking, thanks very much. I quickly learned too that airport security were basically completely unconcerned by the 2 inch long needles that I was carrying in my hand baggage. The only place in the world where I had to deploy the doctor’s letter was in Hong Kong, where the Chinese customs officers pretended they could understand what it said and let me though anyway. It quickly got to the point where I stopped bothering ringing airlines and sometimes didn’t even bother with the doctor’s letter.
Then my drug changed. For six years, I used non-bioset Avonex: this comes in powder form that you rehydrate in the syringe, and I chose it because it doesn’t need to be kept in the fridge. Sadly, this was discontinued earlier this year, and I was forced to start using pre-filled syringes that needed to be kept cold. When we travelled to Switzerland a couple of weeks ago, I had to dig out the specially designed coolbag I was given 7 years ago so that I could pack the dose I needed for the fortnight we were away with some ice packs until I could get to a fridge. What I didn’t think about was the fact that these ice packs contained fluid, and that these would be flagged up as I went through security at London City Airport. Luckily for me, as an afterthought, I had taken along one of my doctor’s letters, and was able to show this to a very relieved young security official who was thinking he might otherwise be forced to confiscate my medication.
The next problem I had was that, because we were moving from hotel to hotel almost every day, I needed to charge up those ice-packs each night in order to keep my medicine cold during the day… and that not every hotel room had a fridge, never mind also having access to a freezer to recharge the ice-packs. I’d asked my MS Nurse about this when I originally switched medication, and she told me that the drug could be out of the fridge for up to 7 hours. This was a bit of a problem, although to be honest, I reasoned that the worst thing that could happen was that the dose would become inert, and because they’re thinking of taking me off it anyway…. what’s the big deal.
As it happens, I looked on the back of the little packet containing the dose one evening, and it says on there that the medicine can be kept out of the fridge for a period of up to seven days….. at which point I stopped worrying.
You spend so much time worrying about the bigger, more obvious impacts that something like MS can have on your life, but sometimes it’s the little things that cause you the most bother.
Six by Nico: Best of 2018
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