Week 25

My Gilenya turned up last week. As always, it turned up smack bang in the middle of the 12.25 - 14.20 delivery slot. I cannot actually confirm the validity of that statement because I wasn't home when it was actually delivered, but it is ALWAYS delivered on time, so lets just assume it was and move on.

My new car is almost ready. They're putting a hoist in the boot so I can get my scooter out in one piece, rather than constantly assembling and disassembling it every time I use the bloody thing. I'm not complaining though. Rather that than a wheelchair. I hate going anywhere in a wheelchair. People treat you like you're a small child in a pushchair, ignore you and communicate with the person pushing you instead. It makes you want to scream, "I AM PHYSICALLY DISABLED, NOT MENTALLY!" But, hey, that's just society. Society can't help it, so I shouldn't really worry about it.

I am writing this blog on Thursday 28th Feb. That means I took my 176th tablet of Gilenya this morning. That's 88mg of the stuff, at an estimated cost of £7,207.20 to the British taxpayer (me included). Thank you very much.

In case the payers of tax are wondering if you're getting value for money, I can confirm that you are because I am worth every penny!! In all honestly, it is a therapy that has been as smooth a ride as possible. Not a single side effect at all and the benefits of better bowel and bladder control and practically zero fatigue most of the time. Unfortunately, there hasn't been any improvement with my walking - yet, which is a shame because my legs are the part of my body that lets the side down, but you have to stay positive, which is why I said "yet" back there. Also these disease modifying drugs aren't designed to make you better. They're not even designed to stop you getting worse. They are supposed to slow down the rate at which you deteriorate. Maybe I am being greedy by wanting improvements, but I can't help it. You'd be the same.

There are probably one or two of you out there contemplating switching from you current medication to Gilenya. Especially if you're having to regularly self inject. If I can give anyone in this scenario a piece of advice, it would be: If your current medication is keeping you relapse free, stick with it. As annoying as injectable medicine is, (I took Rebif for two and a half years) if it's doing its job, then great, that is what you're aiming for. The grass isn't always greener on the other side. If you are on medication, but still having regular relapses, then you are eligible for Gilenya, ring up your Neurologist and beg them for some. Move to an area where the primary care trust say yes if you have to, but ask. It has been fantastic for me and hopefully is for others too.

Keep well,

Dan