Monday, 30 June 2008

Rebif/Bon Jovi

I think its been 3 weeks since I started on the new version of Rebif. I wasn't convinced when I heard that you are no longer supposed to keep it out of the fridge for any real time. Also needs more planning for holidays, but I digress.

So I thought I would just go for it, got it out of the fridge while I prepared so the condensation had time to go and then injected it. I inject manually into my stomach and my thighs and use the auto injector for my bum. I have hardly felt it! I have injected it 9 times and so far the worst stinging I have had is about equal to the least stinging I had using the old stuff! Great, much more comfortable.

I don't do anything special when I inject, just inject it and take ibuprofen immediately after or before. I have found I need to take a couple of paracetamol when I go to bed otherwise I wake up with a headache but I guess that is my body adjusting to the slightly different formula.

So all in all a big thumbs up from me!

So what else have I been up to....... Finished painting the porch - the first room we have completed, it is our porch now! New curtains (for decoration) and a lick of paint, quick and easy. Work is going well, training still but getting into a more hands on bit where I am actually doing work and sending letters. We start on the medical training tomorrow, the liver and substance abuse as a starting topic, should be interesting.

I have had an appointment with the Vocational Rehab Consultant, she was very nice! We had a chat, I told her how I am affected by my MS and she made some suggestions. She thinks I should get a parking space at the office immediately as I have to walk up a hill for 5 minutes to get from the car park to the office and it causes my ON to get worse and I get pain in my legs. She has suggested an ergonomic assessment and a chair that promotes good circulation and that I should be able to work hours that ensure I don't have to spend a long time in the car - which would mean I don't ever stay till half 5. There is also a plan in place so that if I have a relapse some of my work is taken by others and if I have to get the train because of a relapse which means I don't feel safe driving I can shorten my hours slightly to compensate for the extra time! All very good, except some of the above will be noticeable to my colleagues and they may want to know why. Haven't decided what to do get. I guess I should do what means I feel good and well at work....... I will wait for her report. I do think it is positive that they are that interested and seem to be happy/willing to make reasonable adjustments from the beginning!

And the high point - I went to see Bon Jovi at Twickenham Friday evening, it was great! I have been a Bon Jovi fan since I was about 14 and wasn't allowed to go with my friends to see them when I was 15 so I had been waiting for this for 12 years! It was brilliant, they sang lots of greatest hits and lots of newer stuff. They were on stage for almost 2.5 hours! Great lights and clever LCD screen things, it was great!! Soooooo brill!! Can you tell I enjoyed myself!! I was lucky in that the seats in front were empty so even when the people in the rows further down stood up I could choose to sit down. I survived unscathed as well, late night but could sleep in the next morning so got enough sleep.

So brilliant!!

Wednesday, 11 June 2008

Yearly review

I had my yearly review appointment on Monday. It being my first one I had no idea what to expect. I asked my MS Nurse and she said it would be a review of the year and an opportunity for me to ask questions.

Firstly we went through what had happened symptom/relapse/life wise in the last year. He noted down everything, including my moving date and wedding date and my new job title. He commented that what I thought was one long relapse may well have been two at the end of last year (bit of a surprise) and that it had been a busy year.

He then did all the tests they can do easily, reflexes, finger to nose, pigeon steps, hopping on one leg, reading etc etc.

Then we discussed how I was getting on with Rebif, I asked a couple of questions. I asked about the migraines I am getting, we are going to leave further treatment and see how I get on as they seem to be under control, for now, and asked if this latest thing with my eye was a relapse - he said yes, which I thought it would be, just hoping it was more of an excaserbation.....

He rounded up by saying that he would like to leave things as they are and see how I get on. Said to let my nurse know if I have any relapses and gave me a bloods form, really useful at 5pm.......

Still it was a good appointment, he was thorough and helpful, listened and noted lots down!

Other than that I just don't seem to have had much in the way of down time. I am still unpacking and seem to be busy at the weekends, or relaxing...! The new job is going well so far. I am in training at the moment, 2nd week and I am coping well with it. I get home at a sensible time and am managing to go out or do things a couple of evenings as well. The ON is getting better finally. When it is humid the ON gets a little worse but the trend is towards it clearing. The normal tingling is there with the humidity as well but I guess that is par for the course now!

Oh, got to the new Rebif finally, first injection Monday evening. I will give my experience of it, and an overview of my technique to go with it sometime after my first week.

What else, well we are still unpacking, I have turned 27 and I am trying to drum up enthusiasm for getting back to Weight Watchers tonight.......