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.....
Friday, 20 July 2007
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!!
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
EEG (VEP/SEP)
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!!
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!!
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!!
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