It’s been a long old time since my last post. I have reasons – I went on holiday and then I was ill. Other stuff happened besides that, but a blow-by-blow account of my daily life isn’t why I write this stuff. It’s still a long post though. Sorry!

I saw my MS nurse back in October about getting started on a new “preventative” medication. As the type of MS I suffer from is called Relapsing Remitting it means that it (hopefully) responds to a group of medications known as Disease Modifying Therapies (DMTs or DMDs). These medications aren’t a cure or a treatment for symptoms, but a way of trying to prevent the cause and severity of relapses. When I was diagnosed in 2003 they were a very new thing and a patient had to fit a certain criteria to be eligible for them. I was lucky enough to fit that criteria and had three options to choose from. All involved self-injection of varying frequencies, and different side effects. As I wanted to carry on working I chose Copaxone, which required a daily injection but less debilitating symptoms. Apart from the odd hiccup we got on very well, but after 11 years I was fed up of injecting myself every day, and the fatty layer beneath my skin was starting to deteriorate from the frequent injections. I’ll have large dents on my thighs and the backs of arms forever, no matter how much cake I eat the fat won’t come back in those areas. It’s a crime that I can’t fix even a small part of this crappy disease with cake. The syringes also had to be kept in a strict temperature range, which caused plenty of hassle when travelling, camping and going on flights. So it would be an understatement to say that I was ready to give up injecting myself every morning. My neurologist had agreed I could switch to Tecfidera, which had showed to be more effective than Copaxone in trials, and the most important part – is administered via a tablet!

I went into the appointment with my nurse feeling very optimistic and also a little excited, as sad as it may seem. Tecfidera comes with different side effects to Copaxone, and I was prepared to deal with those for the convenience of taking a tablet over injecting. What I had forgotten about was the thing my brain does when I spend too much time thinking about MS, and my brain started doing its thing over the next few days while I digested the info about my new medication. Something about reading the friendly but matter-of-fact tone in the information sheets for medication or MS suddenly makes it real and I have a mini-meltdown. It’s strange because I live with quite a few daily symptoms, it’s not as if I don’t have a constant reminder that my immune system is slowly dissolving my internal electrics. But reading those oh-so-reassuringly-written booklets tips me over the edge every time. The list of possible side effects is the trigger this time. I get scared, a sense of panic creeps in. The train of thought goes something like this:
I don’t want to feel ill! I don’t like taking all these weird chemicals.
What am I doing to myself? This stuff is poison.
I’m giving myself cancer/kidney damage/liver failure by taking this thing nobody knows much about.
My body is falling apart. I’m not even 40.
Healthy people have no idea how lucky they are.
Why am I so ill?
I feel awful every day. I hate it. I can’t take it any more.
My poor body, how much more can it take?
The risk of fatal side effects are tiny but I know my luck, I’ll be the one in ten thousand who dies.
I just want to hide under a duvet, shut the world out and wait for it all to go away.
I can’t talk to anyone about this, they don’t understand.
I wish I was normal.
WHY ME? Why did I develop this idiotic condition? I’ve been ill my whole adult life. It’s not fair.

It always comes back to “Why Me?” and “It’s not Fair”. They are stupid, futile thoughts to have. Everyone has obstacles they have to overcome in life. Everyone has problems. One of mine is MS. Nothing I can do about it, and there’s nothing I or anyone else could have done would have prevented me from getting it.  I’m a control freak, and I know that part of the panic is my perceived loss of control. We like to think we’re in charge of our bodies, but the reality is that our brains are just very good at fooling us into thinking we’re the boss. We’re not at all. Nevertheless, the end of the line for this little dance my mind does every so often leaves me feeling battered, exhausted and an emotional wreck for a week or so. I feel delicate, as if my body will crumble to pieces at the slightest thing. The urge to hide away from everyone and everything is very strong and my confidence deserts me. I function, I get through each day, but I don’t feel there’s much point in doing anything. It eventually passes. It always does, but knowing that doesn’t stop it from happening in the first place.

The trigger for my little pity party in this particular instance is a very, very rare side effect of Tecfidera. Most of us have a virus in our system called JCV (John Cunningham virus). This virus is kept dormant by our immune systems and is therefore harmless. But in very rare cases where people are taking immuno-modifying drugs the virus can become active and cause Progressive Multifocal Leukoencephalopathy . For obvious reasons this is normally shortened to PML. Now the irony that I, the queen of toilet humour am now more susceptible than most of the population to a disease called PML is not lost on me. But it’s pretty nasty, can be fatal and it scared the bejesus out of me. But I’m also an engineer. I know the odds of developing it are microscopic, and I’m monitored for it through regular blood tests, along with low levels of lymphocytes and abnormal liver function. I have to force my practical brain to overcome my panic brain, and stuff it back in the box it lives in.

Anyway, enough rambling about my ever-fragile grip on sanity. I started taking the meds in mid-November. I took advice from my nurse on diet to help with the gastric problems and joined a support group on Facebook for people taking Tecfidera. I suffered some initial side effects. They weren’t altogether pleasant, but they lessened over time. The one that stays with everyone is flushing. It’s like a blush, but absolutely everywhere. I can feel my face, ears and the back of my neck burning. My skin prickles and I go bright red all over. Everywhere. My fella Sean has dubbed it “going tomart” in reference to the fact I look like a tomato. It can last up to half an hour, and one time happened while I was sleeping. The resulting raise in body temperature while I was snugly wrapped in a big duvet caused me to have a night terror, complete with that weird wailing noise you make when you’re trying to scream in a dream. Unfortunately I was having a girly weekend with my friend and she was sleeping in the next room. She’s very understanding, but I’m sorry, Gail. I know it must have been freaky as anything to be woken by that. Apart from the flushes, everything is now trouble-free. I can take going bright red every other day. It’s still better than injections.

But has this new fancy drug had any effect? Well….after a few weeks I noticed that my energy levels were vastly improved. The ever-present fatigue was going away. I was doing things after a day at work that I haven’t been able to manage for years. Tidying up, holding conversations, general chores that would normally have to wait for a day off. I was still tired at the end of the day, but it was “normal person” tired. I remembered how it felt from many years ago. It was great! This new drug is magic, it was somehow helping with my symptoms! Sadly, I was then promptly struck down with a chest infection. I think the last time I was that ill was when I has suspected meningitis (thankfully just nasty flu) when I was about 11. I was completely knocked down for 2 weeks. December just didn’t happen. I sent no Christmas cards, I was back to just existing. I made it back to work on December 18th. Christmas came and went without me really noticing or feeling it, I was too ill to travel to see any friends or family, and seeing the people I love is what makes Christmas for me. Now, with New Year’s Eve just a day away, I’m just about starting to feel more human again. After a reminder that I can’t just shake illnesses off that panicky train of thought has been waiting in the station in my brain again, but this time I’m determined not to get on. I’m seeing in the new year with some wonderful people and I actually feel like having fun. New Year, hopefully new thought processes. Fingers crossed!

Have a wonderful, happy and fun-filled 2016. Thanks for reading my rambling brain dumps. It helps me to write this stuff down 🙂