Sunday 12 July 2009

Better late than never.

Apologies for the delay in updating this but I've been feeling kind of poo recently. It started off as flu -like symptoms (prob from the Rebif) then escalated into a full scale assault by my new nemesis trigeminal neuralgia. For the uninitiated, (and long may you remain so) trigeminal neuralgia is extreme pain on (usually) one side of the face. Imagine the worst toothache you've ever had, multiply it by 1000 and you're still nowhere close. Fortunately I have a lovely GP who gave me some carbamazapine which is finally keeping a lid on it. It's the sort of thing that you wouldn't wish on your worst enemy.

Anyway, onwards and upwards.

I mean to add a few pictures and a little background information (thanks for the suggestions Jen!:) So watch this space.............

Tuesday 23 June 2009

Three down!

Since I last updated, I have had my 2nd and 3rd Rebif injections, thankfully without incident. The flu-like side effects are starting to take hold and I'm starting to feel a bit poo. That said, it's no worse than having a cold/mild flu and if that's the best it can do then bring it on! I don't know why I managed to screw it up so spectacularly the first time but I think I'm getting the hang of it.

3 injections means I'm halfway through the 8.8 microgram course and am due to start the 22's next Wednesday. I am fully expecting that bigger dose = more side effects but I'm determined to ride it out. I am not going to 'suffer from MS' MS is going to suffer from Me!

Thursday 18 June 2009

Technofear!

There was a time, not all that long ago, when I was right up to date with technology. I had a rude wake-up call last night when I was trying to sort out getting this blog fed to my Twitter account. It took me ages to get it sorted, about 3 hours in fact. I just could not get my head around it. Is this my lack of techno savvy or the MS? Mmmm, I'm not keen on using this condition as an excuse for anything so maybe I need to pay more attention to this techno world. The entire populous is connected wirelessly, you can't look at anything unless it's in high definition and here I am still looking for the on switch. I must try harder to keep up!

The side effects I was feeling from the first injection seem to have worn off, which is good. Second injection is tomorrow and I'm doing this one without my MS Nurse. I really don't want to make a mess of it this time. Watch this space!

Wednesday 17 June 2009

How To Make Yourself Look Stupid.

Well, I had my first injection yesterday afternoon under the guidance of my lovely MS Nurse. I decided to use the Rebiject thingy and ended up making a bit of a tit of myself when I cross threaded it when screwing it back together. This caused the glass syringe to break and scatter broken glass and Rebif over the nurse's desk.



Top Tip #1 - Don't Cross Thread The Rebiject!!



Thank heavens for my lovely nurse who has endless patience and lets face it, if it had to go wrong, it's best to do it with the nurse than at home. After the embarrassment had worn of I had a couple of dummy runs without further incident and was able (finally) to give myself the injection. Yay! There was no pain at all and so far no sign of a site reaction.



It's now the afternoon of the day after and I feel as if I've got the tail end of a cold, a bit hot and headachey but nothing a couple of paracetamol can't sort out. I'm going to do the next one the day after tomorrow and on Mondays, Wednesdays and Fridays thereafter. It's all to easy at this stage to think that it's all going to be plain sailing but I have to remember that I'm only taking the 8.8 micro gram doses, the 22 and 44's are still to come. But hey, if I'm going to maintain a healthy number of fleshy bits to inject into, I'd better have some chocolate. I reckon I've earned it!

Tuesday 16 June 2009

A day of firsts.

Today is a pretty big day for me. I had to be up early to take delivery of my first batch of Rebif and I'm off to see my MS nurse this afternoon so she can show me how to do the injections. The delivery driver arrived at 10.30am and I was presented with a large box full of my new medication and associated kit.


I had originally elected to go on Copaxone but was advised by my Consultant that Rebif may be a better option as according to him my MS is pretty active and I may get better results with this. Time will tell. I am a little concerned about the reported side effects (flu - like symtoms etc) but I reckon that there is probably an equal chance of my experiencing minimal side effects, so we'll see.


I have started this blog partly to keep track of how things go, and who knows, other people may find bits of use for themselves. I hope so.


Ready? Here we go................