Tuesday, 31 July 2007

Fed up.....

Its been over two weeks since my appointment with my MS Nurse and I haven't heard from the woman about my drugs yet..... I am fed up with waiting for things. I am also waiting for the results of my EEG which was three weeks ago. Will email my MS Nurse tomorrow when I get home from shopping (with Mum) and ask re the drugs and test results.

Other than that all is good! Am using my days off well by doing very little, went to the pub yesterday and walked down to the pet shop today. A little bit of tidying and washing and thats it!

The weekend was relatively busy. Friday evening my parents came round to B's for dinner, B cooked, I did the starters, and we had a nice evening with wine and music! Went very well I think! Saturday afternoon/evening was a BBQ on the communal garden at my place. We were really worried about the weather but in the end we were out there from 15:30 till 20:00 and most people from the block attended at some point!

Sunday I re took my Bronze Medallion for the umpteenth time. I'm very unfit and therefore found the water part of the exam tiring but it didn't make any of my lingering symptoms worse which is great.

Back to work on Friday morning - really looking forward to it, especially the weekend as I am working with a good friend!

Thursday, 26 July 2007

I made it!

I have completed my first block of three shifts on the road! 16:00 - 01:00, even finished late on Tues night, my first overtime since March!! Come to think of it I haven't filled in my time sheet as yet, must do that........

I am feeling pretty good today! I guess following my first shift I must have managed to get dehydrated and so felt pretty bad during the day. I think I do need more sleep than I did before but only an hour or so.

Over the 2nd two shifts we did some 'interesting' jobs. Mainly mad women but an RTA (my usual type of job) and a well known alcoholic who had fallen over! Oh and the staff at TGI Fridays in Reading don't appear to be able to tell you what is in their food. This is an issue when you are allergic to sweet peppers and have been told the dish you have ordered doesn't contain them.......fortunately her reaction usually comes on over 30 mins and we took her over to the hospital before it really got started - let the hospital deal!!

So all in all I am really pleased to be back at work and to have coped with the hours. I will have to work 12 hour shifts but I think I will be fine with them. My (and Bs) sleep won't be so disturbed on the 12 hour shifts as they are either all day or all night rather than me getting in at 2am and B getting up at 7am!

4 1/2 months ago when I came off the road I thought, back problem, couple of months with some physio for example then back out to it. Then things like MS and tumors were mentioned and suddenly its neurological. I still chose to hope that it was an isolated incident, I didn't prepare myself at all for the final diagnosis of MS. I think in someways it was better for me to carry on not worrying about the possibilities and wait for the Neuro to give me the results.

Throughout all of this I have always clung to the FACT that I would get back on the road doing the job I love. I am now there. I know there may be a time when I can't do what I want to do anymore but I will cross that bridge if I come to it. I also know that future relapses may take me off the road again but I am hoping that Rebif (the interferon I will be taking) will limit the number and severity.

I have written an email to thank all of those at the RBH that have been involved with my diagnosis as I have been diagnosed quickly with very little fus and have always been listened to and treated with kindness.

Right, I am hungry - lunch!!

Tuesday, 24 July 2007

At Work!

I am posting from work!! It is 00:20 and I have been on base since about 21:30. This is a sure sign that I will not be finishing at 01:00 as planned....... This is my first shift back on th road since the beginning of March. It is such a relief to be back and not be suffering! I am feeling a little tired but then it is gone midnight.

I am working as a 3rd man with a crew tonight and the next couple of nights so I can get back to it gently! So far tonight we have seen 2 patients both of which needed our help! I haven't done anything too taxing though. I have attached the 3 lead monitoring and sats probe and have drawn up some flush, the 2nd pt needed boarding from a very unhelpful place and position requiring a 4th pair of hands! Used the ED2000 (a spinal immobilisation extraction tool mainly used in RTAs) to help so we could move him onto the spinal board as nothing else would fit. I have previously used the ED2000 once to immobalise a pelvis and twice at RTAs. Haven't used it for ages and used it my first shift back!!

I have had a good first shift (fingers crossed I'm nearly done) and look forward to getting out there as a crew again - here's to next week!!

Friday, 20 July 2007


Showed the cracks again yesterday. About 5 minutes after B and I headed off to do shopping for tonight I started getting ratty with him. I have no idea why..... I apologised when I realised and was suddenly much nicer....... I don't do mood swings....... Then when we got home I asked why B had done the hoovering when I said I would do it. One of my jobs, he said he didn't know when I would be back and if I would be capable of doing it. This was the statement that got me. Assuming I wouldn't be able to do it when I got in. I know I wasn't well the day before but I had said I felt fine in the morning before I went to work.

This is when the tears started. I hate it when I cry, I have never cried this much before. I cried for a couple of hours when I got dumped once and I have cried at work but never this many times in 2 months. B just held me and said sorry for the comment, which he didn't really need to, I shouldn't have reacted like that to a simple comment. There is another comment that has been swimming round my head recently, we were both a little tipsy when he made it and I think he was joking, so seeing as I was already in tears I decided to bring it up as well. He put my mind at rest about it.

Once I'd had my little cry I said sorry lots and we carried on with the dinner. I do worry how much of this he'll put up with..... How long will I be 'emotionally unstable' for?? The worst thing is it sneaks up on me........

Anyway, feeling a little better today although I think I am possibly one word away from tears again.....

Tuesday, 17 July 2007

Half Day of Appointments

Yesterday was a half day at work with two appointments in the afternoon. I saw my MS Nurse (MSN) for the first time and she was really nice. We chatted about my symptoms and how there were and about the form I have to fill in and send to the DVLA. We then moved on to DMDs and I said I still wanted to try Rebif. According to MSN I can adjust the time I take it per week as long as it is at the same time all that week which is great. She was going to put the prescription in when she got back yesterday and I should hear from the delivery company in the next two weeks. Fingers crossed I will be on the drug within a month!!!

Next was Occi Health, I guess the guy I saw trusted me to know I was ready to go back on shift and asked me what I wanted to do and then said that he'd write the paperwork! Was in there about three minutes. I then bimbled over to base to organise some 3rd manning and my first week back on the road - can't wait (although I am getting nervous.....). Oh and another thing my uniform is now a bit tight......I have a week to loose a few pounds!!

So I am in my last full week in the office this week! I may pop in and make up some hours up next week but I have to check if thats ok with resources. Will see.

I am still waiting but at least my sanity is safe I am going back to work!!

Tuesday, 10 July 2007


So today was my last appointment for a test. I still need to see the MS Nurse but thats not booked yet and isn't for testing, it is so we can meet and have a chat about MS and hopefully drugs!!

Visual Evoked Potentials and Somatosensory Evoked Potentials test the nerve pathways between the eyes and the back of the brain and from the arms and legs through the spinal cord to the brain. It took a while (1hr 20mins) but was very interesting. They did the visual first and then the arms and legs (easier to type and spell....). The technician took measurements of my head and made marks all over it with a soft pencil. She then used a mixture which rubbed the sweat and dead skin off the areas of skin she had marked. Small metal discs were then stuck to my head using a sticky paste. I also had one on my forehead, one on the back of my neck and then one each of my shoulders. No probe in the back of my head - very happy about that!!

Once I was wired up I watched a TV screen which had a black and white board on it. In the middle of the screen was a single white square and while all the other black and white squares moved around I had to focus on the single white square that didn't move - much more difficult than it sounds and I had one eye covered over.

Next the technician cleaned areas of my wrists and forearms. One at a time she attached a little thing that had two probes to each of my wrists which conducted electricity through to stimulate the nerve underneath. Once the electricity was turned up enough my thumbs started twitching!! I couldn't stop laughing and it took ages to do the test as the trace wasn't clear enough..... It was pretty much the same for my toes but I had given up laughing by then. My left hand and both ankles had to be adjusted (well the electric thingy) as my nerves don't seem to be even close to the place they are supposed to be!!

In the end the person supervising the technician came in to move the probe around and then hold it in the right place so all went well! She had been in once before when the technician wasn't sure about the results from my left eye but as I have had ON in my left eye recently I think it was within the 'ok' bounds.

I won't get my results for around 2 weeks - will have to ask for them as I won't see a neuro for a year now - if all goes well! Still waiting for the MS Nurse to ring but she did only just get back from her hols so I'll wait!!

B and I went out for dinner, was very nice! We've been together for 6 months now which is great! I ended up really tired after dinner and couldn't face the pub afterwards and I felt really bad about it. I'm sure B can't be that happy about it, should have been a good night out.....we did stay up late chatting and having a couple of drinks which was nice. We had a chat about how I am feeling as I haven't been writing much on here. I found it hard to explain cause even I don't know. I feel like I should be more upset about this life long, progressive disease I have and am worried I'm not really dealing with it and am worried that it will hit me hard if it suddenly sinks in.. Having said that I am dealing with aspects such as going to appointments, getting the forms for the DVLA and talking about it with family, friends and colleagues. Who knows, going to just get on with it!!

The fun, great, happy news is that B and I got a hamster at the weekend! Her name is Plum and she is a Syrian hamster with dark brown and white markings. She is still very scared!! B thinks she is very cute but reckons the novelty value will wear off!! I think she is great but she keeps hiding from me........such is life!

Right CSI!!

Friday, 6 July 2007

Getting back to normality, whatever that is.....

Its been long enough that I am getting used to the Mon - Fri lark and not doing much in my spare time. This week I have taken steps to get back to MY life! I have an Occi Health appointment (I hope I don't have to get stroppy with them) and have emailed my station manager to let him know I am ready to go back, fingers crossed the first week of August!!! I am back working full hours at HQ as well now. Not really got enough to do as the two new bods are doing all the jobs and there is very little point in me taking on more work. Still finding enough to keep me occupied most of the day!

I have a few little tingling sensations left in my feet and the vision in my left eye is still a little less crisp than my right but between the two eyes my vision is fine. Considering how many parts of my body have been affected over the last 5 months I think I am doing well!!!

I went to watch the Summer Soiree of the Orchestra I play in last night. I haven't played this term and have really missed it. By the time I was feeling well enough to drive and play it was too late to join in. Going next week for a sight reading evening and then back properly in September. I am back to lifesaving stuff, have been for a while so that has been good and am back pubbing more regularly!

So all in all things are going well!!