On wednesday I started taking 'Alli'. It's orlistat, with a brand name, and is to help with weight loss. It works by binding to 25% of the fat in a meal preventing it from being absorbed - well that is my understanding anyway.
I had cut down the 10 days before (as recommended) but also managed to finish most of the higher fat items in the house over the evenings. With me it's all about it not being there to eat in the first place!
I can see how this helps people though. The packaging advises side effects such as wind, oily residue, diarrhoea and oily soft stools, therefore, as long as you keep taking the tablets self preservation sets in and you try to avoid overdoing the fat content at all costs! The starter pack gives you the calorie and fat target to stick to based on your weight and as I am VERY overweight I have a target of <19g fat per meal and 1800 calories over the day. So far I have eaten fewer calories each day but have been about on target for the fat at lunch and dinner.
You have to have a BMI of over 28 and it is a pharmacy only drug - you have to fill in a form - you can buy it online though! You have to fill in a form and your order has to be approved but that makes it even easier!
Anyway, I guess I will now be including a weight loss update on here. I know I need to loose weight, should my MS become problematic in terms of mobility in the future weighing what I do now will not help. Also, forgetting MS, my BP defies my weight at the moment but it won't forever. I am at a much greater risk of develping heart disease and diabetes in the future. I hear you say, anything could happen in the future, yes it could, but I don't want to be making anything that does happen worse!
On a different tack - I hope everyone is feeling some relief now the weather has cooled down a bit. My legs feel like my legs again and it is no longer a struggle to stay awake and use my brain in the evenings. Last weekend was interesting, the week was ok, an air conditioned building, but the weekend. B and I went out to do some shopping and by the time we were on the way home my brain seemed to have stopped functioning!! Still, shouldn't complain, it's nice to see the sun from time to time!
Showing posts with label Symptoms. Show all posts
Showing posts with label Symptoms. Show all posts
Saturday, 11 July 2009
Friday, 3 July 2009
Moan when it's hot, moan when it's cold - can't please me...!!
Well it has been a while. After getting married and going to Cardiff for a couple of nights it was all back to normal and back to work. Fortunatelt only for a couple of days before the weeked but then it was a month until we got to go on Honeymoon.... Still it went quickly!
We went to Turkey in the end. We chose a hotel in Belek and had a swim up suite. The pool which was outside our patio doors was a smaller pool and away from the main hotel so it was really nice, relaxing and quiet! We spent most of our time in and around the hotel with 4 excursions to see the sights. I really don't know what we did for 2 weeks really...!!!
The temperature in Turkey was between 30 and 39 degrees, sometimes it was 30 at 8pm. Fortunately it was a drier heat than here and we were able to go into air conditioned buildings and get into the pool to cool off. Now we are back in the UK it is too hot at 30 degrees! The heat here just has more of a humid feel to it. I also survived 2 weeks in Turkey with very little in the way of extra tingling but I now have a more definate change in sensation to my right leg and to some extent the left and it almost feels swollen, it isn't but it is just that tight sensation. Still could be worse!
I had my yearly appt with my neuro before we went away. Nothing new really, although I apparently better than I was last year - which I think is right as I had just had a relapse last time I went - ON. I got the impression my reflexes in my knees were a bit dodgy - only because they felt weird and were a bit brisk - not that I actually know!
Work is the same, very busy this week, but then I have just had 2 weeks off and 3 of the team are on leave.
I am now going to take this hot laptop off my lap and watch Murrey (hopefully) beat Roddick!
We went to Turkey in the end. We chose a hotel in Belek and had a swim up suite. The pool which was outside our patio doors was a smaller pool and away from the main hotel so it was really nice, relaxing and quiet! We spent most of our time in and around the hotel with 4 excursions to see the sights. I really don't know what we did for 2 weeks really...!!!
The temperature in Turkey was between 30 and 39 degrees, sometimes it was 30 at 8pm. Fortunately it was a drier heat than here and we were able to go into air conditioned buildings and get into the pool to cool off. Now we are back in the UK it is too hot at 30 degrees! The heat here just has more of a humid feel to it. I also survived 2 weeks in Turkey with very little in the way of extra tingling but I now have a more definate change in sensation to my right leg and to some extent the left and it almost feels swollen, it isn't but it is just that tight sensation. Still could be worse!
I had my yearly appt with my neuro before we went away. Nothing new really, although I apparently better than I was last year - which I think is right as I had just had a relapse last time I went - ON. I got the impression my reflexes in my knees were a bit dodgy - only because they felt weird and were a bit brisk - not that I actually know!
Work is the same, very busy this week, but then I have just had 2 weeks off and 3 of the team are on leave.
I am now going to take this hot laptop off my lap and watch Murrey (hopefully) beat Roddick!
Saturday, 21 February 2009
Time...
...it seems to be running away at a phenominal rate at the moment. I never seem to get the time to blog anymore and I suppose the better I feel the less I feel the need to blog - that is a good thing!!
I am still only experiencing my background MS symptoms which is great and I have now been back at work full time for two weeks. It has been tiring as I have been on shortened hours since October and B and I have been very busy in the evenings but I am adjusting and managing well. I don't think I am unusual in having fairly long winded relapses but I think the average is somewhat shorter. I also have more in the way of sensory symptoms remaining than I thought I would have - although a lot of the remaining symptoms relate to my relapses in 2007 - I have a slight change in sensation to my lower legs and hands/forearms which just seem to remain at a level which doesn't have an impact but is enough to remind me the feeling isn't normal...... Still, the bits that matter to me - like my vision, have always returned to pre relapse normality eventually.
My migraines however have not had the decency to get any better. I am still on the increased dose of Amitriptyline (50mg) to try and help with them but I am now averaging two a week. Yesterday I had one at work that didn't respond to the medication so had to leave work early. I hate having to do that, I haven't had to since reduing my hours. I guess with how busy I (we) have been alongside going back to full time hours, added to the terminally boring meeting in a warm room it was just waiting to happen.
On the subject of terminally boring meetings......! I have discovered that the beginning of the year has even more meetings than the rest of the year. Company Kick Off, Claims Kick Off, Customer Care Division Kick Off, plus the normal quarterly meetings, I question the need for all of these.... I will say again that working for the UK arm of a big american corporation has some definate pluses but the overload of meetings is a definate downside...... Work on the whole however is very good at the moment. I am going to have Zurich and a section of Virgin Media as my only clients which is great. I think the broker for Virgin Media are harder work than Zurich but it will again be good experience and a different one to Zurich.
Work are again being very accomodating. I am going to be having Hyperbaric Oxygen Therapy at the MS Therapy Centre and have been given the time off to attend for the 11 sessions I need to have initially. I am taking leave for the first 4 days so I am meeting them some way with the time off I need. I am also having Accupuncture at the moment. I have only had two full sessions and the initial assessment and so far have felt worse rather than better.... Still I am going to perservere for a while longer.
The kittens are getting big now and are spending time outside every day. We haven't been able to get them fully outside yet as it is too cold to leave the door open for them to get used to using the litter tray outside and then going to the toilet outside and they still haven't got the hang of getting into the garage through the cat flap...... Whisky has been outside of the garden a couple of times now. He hasn't worked out how to get back in as yet so we have to go to the back gate and let him in, silly kitty!
As for the wedding - it's only about 2 1/2 months away - how did that happen...... We don't have a lot left to do really, well I suppose it is quite a lot but a lot of little things. All the big main things are done, things like table dressing and where to get the beer from are left. I also need to have a dress fitting or two once the dress arrives, at the last minute (I did decide to get a dress at the last minute..). I have asked Mum to organise the favours as she has more of idea than I do and I hadn't really delagated anything. Tomorrow we are going to look at Nan's cake books and decide what sort of thing we would like. Well I say we, most likely I!
We have booked a date to try the menu's and wine with both sets of parents which should be good and our stag and hen do's are pretty much there. I am having a nice relaxed day and evening at a fairly local hotel with around 10 friends and family and B is going to Newcastle for the weekend to get very drunk two nights in a row and to go gocart racing. Good job it's a few weeks before the wedding. A friend of B's is getting married a couple of weeks after us so his stag do is the week before our wedding - B better come back in one piece!
Oh, on the subject of other weddings, have I mentioned my boss is getting married two hours before me? It's quite funny really, we keep being asked (tongue in cheek) if 'we' are getting married! Two different venues and times so I think we are safe!
Engagement seems to be the thing for end 2008, beginning 2009. 3 couples in B's circle of friends are now engaged after being in long term relationships - lots of weddings this year!
I was on the MS Society message boards this morning and discovered a new MS blog; Me, Myself and Tysabri, which as it sounds is a blog about a journey through her treatment with Tysabri. Tanya has so far had one infusion of Tysabri and has since had treatment with steroids for a further relapse. She sounds a lot like me in some ways, she is trying to recapture aspects of her life before MS, which is, I suspect, a trial for all of us dealing with the diagnosis of a life changing medical condition, however slight or major that change is and whatever the medical condition.
I was also reading an article in Open Door, the MS Trust publication, which was titled 'Twenty something and MS'. It again rings many similarities for me. I know I shouldn't have defined myself by my job, but you know what, I did, so when I took the decision that I couldn't do it anymore and took a new job I spent about 7 months thinking I had given up and saying that the physical aspects of MS were the reason for leaving. I now think that I took the decision for good reason. I had changed, even out there on the road. My confidence was diminished both times I came of the road and I wasn't as good at my job anymore. Couple that with having all the responsibility on the ambulance the vast majority of the time meant that I didn't feel emotionally stable or confident enough to go back on the road. Physically, who knows, I may have been able to manage but I would have been back off the road again within 5 months with the confidence seeping out of me again. It's actually quite hard to accept that I didn't give up, I chose to leave for good reason, just not the reason that is easier, to admit to not being good enough at the job to be making decisions about people's health is harder than blaming it on physically not being able to do it anymore.
I think now that physically I probably wouldn't be able to manage for more than a month at a time. I have found it hard enough working in a sensible sedentary role over the last few months. If things get better maybe I will try and go back to it, who knows. I have been able to reliably go to Lifesaving and play my clarinet which is great, a life outside of work. Is it worth it? I am adjusting my outlook on life and coming to terms with not defineing myself by my job. It has got easier over the last few months and it helps that I am again good at a job that I am enjoying and am rewarded with good reviews for the hard work. It isn't the same as my old job but I will always have that experience.
I suppose the point is, that I think I am now moving away from the old definition of me and carving out my new definition, for want of a better word, which is more than a job. It does of course include my role and my ability to do it well but now includes other, more important things like lifesaving, playing my clarinet and of course the man I will, fairly shortly, be marrying.
So after my indulgent ramble (the benefit of writing a blog - sort out the rambling thoughts!) I will now go get myself sorted and start a belated Saturday (it's about Midday...!).
I am still only experiencing my background MS symptoms which is great and I have now been back at work full time for two weeks. It has been tiring as I have been on shortened hours since October and B and I have been very busy in the evenings but I am adjusting and managing well. I don't think I am unusual in having fairly long winded relapses but I think the average is somewhat shorter. I also have more in the way of sensory symptoms remaining than I thought I would have - although a lot of the remaining symptoms relate to my relapses in 2007 - I have a slight change in sensation to my lower legs and hands/forearms which just seem to remain at a level which doesn't have an impact but is enough to remind me the feeling isn't normal...... Still, the bits that matter to me - like my vision, have always returned to pre relapse normality eventually.
My migraines however have not had the decency to get any better. I am still on the increased dose of Amitriptyline (50mg) to try and help with them but I am now averaging two a week. Yesterday I had one at work that didn't respond to the medication so had to leave work early. I hate having to do that, I haven't had to since reduing my hours. I guess with how busy I (we) have been alongside going back to full time hours, added to the terminally boring meeting in a warm room it was just waiting to happen.
On the subject of terminally boring meetings......! I have discovered that the beginning of the year has even more meetings than the rest of the year. Company Kick Off, Claims Kick Off, Customer Care Division Kick Off, plus the normal quarterly meetings, I question the need for all of these.... I will say again that working for the UK arm of a big american corporation has some definate pluses but the overload of meetings is a definate downside...... Work on the whole however is very good at the moment. I am going to have Zurich and a section of Virgin Media as my only clients which is great. I think the broker for Virgin Media are harder work than Zurich but it will again be good experience and a different one to Zurich.
Work are again being very accomodating. I am going to be having Hyperbaric Oxygen Therapy at the MS Therapy Centre and have been given the time off to attend for the 11 sessions I need to have initially. I am taking leave for the first 4 days so I am meeting them some way with the time off I need. I am also having Accupuncture at the moment. I have only had two full sessions and the initial assessment and so far have felt worse rather than better.... Still I am going to perservere for a while longer.
The kittens are getting big now and are spending time outside every day. We haven't been able to get them fully outside yet as it is too cold to leave the door open for them to get used to using the litter tray outside and then going to the toilet outside and they still haven't got the hang of getting into the garage through the cat flap...... Whisky has been outside of the garden a couple of times now. He hasn't worked out how to get back in as yet so we have to go to the back gate and let him in, silly kitty!
As for the wedding - it's only about 2 1/2 months away - how did that happen...... We don't have a lot left to do really, well I suppose it is quite a lot but a lot of little things. All the big main things are done, things like table dressing and where to get the beer from are left. I also need to have a dress fitting or two once the dress arrives, at the last minute (I did decide to get a dress at the last minute..). I have asked Mum to organise the favours as she has more of idea than I do and I hadn't really delagated anything. Tomorrow we are going to look at Nan's cake books and decide what sort of thing we would like. Well I say we, most likely I!
We have booked a date to try the menu's and wine with both sets of parents which should be good and our stag and hen do's are pretty much there. I am having a nice relaxed day and evening at a fairly local hotel with around 10 friends and family and B is going to Newcastle for the weekend to get very drunk two nights in a row and to go gocart racing. Good job it's a few weeks before the wedding. A friend of B's is getting married a couple of weeks after us so his stag do is the week before our wedding - B better come back in one piece!
Oh, on the subject of other weddings, have I mentioned my boss is getting married two hours before me? It's quite funny really, we keep being asked (tongue in cheek) if 'we' are getting married! Two different venues and times so I think we are safe!
Engagement seems to be the thing for end 2008, beginning 2009. 3 couples in B's circle of friends are now engaged after being in long term relationships - lots of weddings this year!
I was on the MS Society message boards this morning and discovered a new MS blog; Me, Myself and Tysabri, which as it sounds is a blog about a journey through her treatment with Tysabri. Tanya has so far had one infusion of Tysabri and has since had treatment with steroids for a further relapse. She sounds a lot like me in some ways, she is trying to recapture aspects of her life before MS, which is, I suspect, a trial for all of us dealing with the diagnosis of a life changing medical condition, however slight or major that change is and whatever the medical condition.
I was also reading an article in Open Door, the MS Trust publication, which was titled 'Twenty something and MS'. It again rings many similarities for me. I know I shouldn't have defined myself by my job, but you know what, I did, so when I took the decision that I couldn't do it anymore and took a new job I spent about 7 months thinking I had given up and saying that the physical aspects of MS were the reason for leaving. I now think that I took the decision for good reason. I had changed, even out there on the road. My confidence was diminished both times I came of the road and I wasn't as good at my job anymore. Couple that with having all the responsibility on the ambulance the vast majority of the time meant that I didn't feel emotionally stable or confident enough to go back on the road. Physically, who knows, I may have been able to manage but I would have been back off the road again within 5 months with the confidence seeping out of me again. It's actually quite hard to accept that I didn't give up, I chose to leave for good reason, just not the reason that is easier, to admit to not being good enough at the job to be making decisions about people's health is harder than blaming it on physically not being able to do it anymore.
I think now that physically I probably wouldn't be able to manage for more than a month at a time. I have found it hard enough working in a sensible sedentary role over the last few months. If things get better maybe I will try and go back to it, who knows. I have been able to reliably go to Lifesaving and play my clarinet which is great, a life outside of work. Is it worth it? I am adjusting my outlook on life and coming to terms with not defineing myself by my job. It has got easier over the last few months and it helps that I am again good at a job that I am enjoying and am rewarded with good reviews for the hard work. It isn't the same as my old job but I will always have that experience.
I suppose the point is, that I think I am now moving away from the old definition of me and carving out my new definition, for want of a better word, which is more than a job. It does of course include my role and my ability to do it well but now includes other, more important things like lifesaving, playing my clarinet and of course the man I will, fairly shortly, be marrying.
So after my indulgent ramble (the benefit of writing a blog - sort out the rambling thoughts!) I will now go get myself sorted and start a belated Saturday (it's about Midday...!).
Saturday, 11 October 2008
The unbearable cuteness of kittens
These two cuties are Pepsi and Whisky! They arrived to live with us last Thursday (2nd October) so have firmly taken over!! So far they haven't recked anything, touch wood, but they aren't allowed many places on their own...
We have been to the vets once for vaccinations, worming, general check over and blood tests for FIV and Leukemia (because their Dad is a stray) and although we weren't popular it went well and they were as good as gold when we were with them. Apparently Pepsi nearly hit the roof when the blood tests were done but that is understandable.
(I am currently being attacked by Whisky who is not usually this playful......!!!)
Plum (the hamster) doesn't seem to care about the presence of the cats and is going about her daily trial to try and escape from her cage. The cats aren't allowed in the living room when we aren't around as that is Plum's home and we need to sort her cage out a bit better before we can trust it not to be break-out-able...... At the moment it has numerous pirex dishes on top of it as she can lift the top up. Little bugger she is (and it is a poorly designed cage.....).
The fish apparently are quite interesting but have only been looked at. The one's in the kitchen have actually been left alone entirely.
Other than these two the holiday was really good, we good some really good weather considering what it had been like. Was really good to see my Aunty V in Wensleydale and as always the cheese factory was great!!
Unfortunately my relapse didn't continue to get better but decided to get worse...... It hasn't moved around much which is good, but my right leg has become more numb again, to the point where my balance has been affected, my right arm/hand is also more numb and is causing some pain by the end of a days typing, also the right side of my head is numb! Never had a numb head before, it also itches which is really nice....! And the normal tiredness and bladder problems that go with my relapses. Still it could be worse and I'm only annoyed as I was hoping it was getting better nice and quickly for once.......
Having said all that I noticed that my leg seemed a bit better yesterday so I am going to just keep my fingers crossed at some point before Xmas things return to normal (for me).
So all in all am actually feeling positive and better in myself at the moment. Still having moments and am planning to continue some counselling at the MS Therapy Centre. I have also had Physio recommended to help with my balance so hope to do that there as well.
I am going to go now so I can get harassed some more before I go off for my flu jab!
We have been to the vets once for vaccinations, worming, general check over and blood tests for FIV and Leukemia (because their Dad is a stray) and although we weren't popular it went well and they were as good as gold when we were with them. Apparently Pepsi nearly hit the roof when the blood tests were done but that is understandable.
(I am currently being attacked by Whisky who is not usually this playful......!!!)
Plum (the hamster) doesn't seem to care about the presence of the cats and is going about her daily trial to try and escape from her cage. The cats aren't allowed in the living room when we aren't around as that is Plum's home and we need to sort her cage out a bit better before we can trust it not to be break-out-able...... At the moment it has numerous pirex dishes on top of it as she can lift the top up. Little bugger she is (and it is a poorly designed cage.....).
The fish apparently are quite interesting but have only been looked at. The one's in the kitchen have actually been left alone entirely.
Other than these two the holiday was really good, we good some really good weather considering what it had been like. Was really good to see my Aunty V in Wensleydale and as always the cheese factory was great!!
Unfortunately my relapse didn't continue to get better but decided to get worse...... It hasn't moved around much which is good, but my right leg has become more numb again, to the point where my balance has been affected, my right arm/hand is also more numb and is causing some pain by the end of a days typing, also the right side of my head is numb! Never had a numb head before, it also itches which is really nice....! And the normal tiredness and bladder problems that go with my relapses. Still it could be worse and I'm only annoyed as I was hoping it was getting better nice and quickly for once.......
Having said all that I noticed that my leg seemed a bit better yesterday so I am going to just keep my fingers crossed at some point before Xmas things return to normal (for me).
So all in all am actually feeling positive and better in myself at the moment. Still having moments and am planning to continue some counselling at the MS Therapy Centre. I have also had Physio recommended to help with my balance so hope to do that there as well.
I am going to go now so I can get harassed some more before I go off for my flu jab!
Saturday, 2 August 2008
Notice
We gave notice of our wedding on Monday! Seems very real now! We both had a half day on Monday so we could fit in with their opening times and had a nice afternoon together.
Work is ok, I had a better week this last week. Not as tired and only 1 migraine. I haven't had the cc letter from my nurse yet so I will have to chase that. Want to get something from the GP before I decide I don't need it, well I have already done that as I haven't had a migraine since Tuesday, but will decide I need it again when I have another migraine sometime next week..... I have a meeting soon with the Vocational Rehab Consultant looking after me and my manager to talk about me and any adaptions that can be made to help me at work. I am hoping they will be as good as I am hoping and that I get everything I would like - such as a parking space, new chair, new mouse/keyboard and a fan for my desk. I guess having fallen over on the way to the work overflow car park I will get the parking space without much question!
I had a good night last night (and shopping trip today) with a couple of friends from Uni. It was great to catch up with all the comings and going. I can't believe one of them is trying for a baby. So scary and grown up!!
The most exciting news of the week as that we have booked our honeymoon!!!!! Two weeks in the sun!!!!!!!!!!
MS - is behaving itself still. With the humidity at the moment my right eye isn't getting the chance to fully clear up so continues to cause me problems on and off and again with the humidity the tingles are more irritating. Other than that all good!!
Work is ok, I had a better week this last week. Not as tired and only 1 migraine. I haven't had the cc letter from my nurse yet so I will have to chase that. Want to get something from the GP before I decide I don't need it, well I have already done that as I haven't had a migraine since Tuesday, but will decide I need it again when I have another migraine sometime next week..... I have a meeting soon with the Vocational Rehab Consultant looking after me and my manager to talk about me and any adaptions that can be made to help me at work. I am hoping they will be as good as I am hoping and that I get everything I would like - such as a parking space, new chair, new mouse/keyboard and a fan for my desk. I guess having fallen over on the way to the work overflow car park I will get the parking space without much question!
I had a good night last night (and shopping trip today) with a couple of friends from Uni. It was great to catch up with all the comings and going. I can't believe one of them is trying for a baby. So scary and grown up!!
The most exciting news of the week as that we have booked our honeymoon!!!!! Two weeks in the sun!!!!!!!!!!
MS - is behaving itself still. With the humidity at the moment my right eye isn't getting the chance to fully clear up so continues to cause me problems on and off and again with the humidity the tingles are more irritating. Other than that all good!!
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.......
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.......
Sunday, 18 May 2008
Two weeks on
Its been two weeks since we moved. Feels like we've been here for longer than that! I am doing ok. Really started to struggle at the end of last week and tried to take it easy last weekend - obviously didn't really and ended up a gibbering wreck by the end of Sunday but, at that point leart and just stopped. Since then I have been leaving work a little early to get home and nap and have watched B do all the unpacking and putting up of light fittings and coat racks etc..... I have felt really guilty but I have begun to feel better and happier again so I obviously needed to stop.
My right eye is staying the same really, ok most of the day and then as I start to get tired I start to notice it more and find it harder to look at the computer screen. Now for instance the screen is no problem, if I was doing this at 3 or 4 pm I would probably have to concentrate a bit harder. My MS Nurse says it is boarder line ON as I don't have any pain with it. I am sure it is ON but will see an optician if it hasn't started to clear up in the next month.
We had our house warming party yesterday. It was supposed to be a BBQ and garden thing but as the weather wasn't that good we spent most of the time inside - still managed to use the BBQ as it was dry most of the time. I have been up a couple of hours now and have cleared all the bottles up, loaded the dishwasher and washed all the glasses which are either too big for the dishwasher or not dishwasher safe. Still to look forward to - cleaning the BBQ and the patio where the fat dripped....... I will wait for B to surface before I start on that!
Still we had a really nice afternoon and evening. Only one of my friends could make it but loads of B's friends came. It was a sort of 2 session day. Those with kids came for a few hours in the afternoon/early evening and then those without kids came for the evening. We invited the neighbors and they seem to be really nice so thats a good start!
Oh, almost forgot, I got my blood test results this week! I have gone from a result of 123 (something to do with liver enzymes) to 66, which is apparently just above normal! My consultant has said I don't need another test for 6 months - I think I am due one in August but I'll see what they say at my appointment in June. I was really worried I would have to come off Rebif but I am really chuffed that everything seems to be returning to normal!!
On the subject of Rebif, I am hoping to get the new formula in my delivery on Wednesday. I was told I would get it last time but didn't and then got another letter telling me I'll be getting this time so we will see. Apparently you aren't supposed to get it out of the fridge before injection anymore as they can't guarantee its stability. I am reserving judgment until I get it and use it.
Lost 1lb at weight watchers over the last 2 weeks - thought I had put on so I was really chuffed!!
So my last day at work is coming up fast, then I have a week off, then I start my new job! Very exciting and sad at the same time. We are expecting B's parents soon and we all sorts of things still to do here. I MUST remember to pace myself!
My right eye is staying the same really, ok most of the day and then as I start to get tired I start to notice it more and find it harder to look at the computer screen. Now for instance the screen is no problem, if I was doing this at 3 or 4 pm I would probably have to concentrate a bit harder. My MS Nurse says it is boarder line ON as I don't have any pain with it. I am sure it is ON but will see an optician if it hasn't started to clear up in the next month.
We had our house warming party yesterday. It was supposed to be a BBQ and garden thing but as the weather wasn't that good we spent most of the time inside - still managed to use the BBQ as it was dry most of the time. I have been up a couple of hours now and have cleared all the bottles up, loaded the dishwasher and washed all the glasses which are either too big for the dishwasher or not dishwasher safe. Still to look forward to - cleaning the BBQ and the patio where the fat dripped....... I will wait for B to surface before I start on that!
Still we had a really nice afternoon and evening. Only one of my friends could make it but loads of B's friends came. It was a sort of 2 session day. Those with kids came for a few hours in the afternoon/early evening and then those without kids came for the evening. We invited the neighbors and they seem to be really nice so thats a good start!
Oh, almost forgot, I got my blood test results this week! I have gone from a result of 123 (something to do with liver enzymes) to 66, which is apparently just above normal! My consultant has said I don't need another test for 6 months - I think I am due one in August but I'll see what they say at my appointment in June. I was really worried I would have to come off Rebif but I am really chuffed that everything seems to be returning to normal!!
On the subject of Rebif, I am hoping to get the new formula in my delivery on Wednesday. I was told I would get it last time but didn't and then got another letter telling me I'll be getting this time so we will see. Apparently you aren't supposed to get it out of the fridge before injection anymore as they can't guarantee its stability. I am reserving judgment until I get it and use it.
Lost 1lb at weight watchers over the last 2 weeks - thought I had put on so I was really chuffed!!
So my last day at work is coming up fast, then I have a week off, then I start my new job! Very exciting and sad at the same time. We are expecting B's parents soon and we all sorts of things still to do here. I MUST remember to pace myself!
Tuesday, 6 May 2008
Lunch
Isn't it a lovely day today? The sun is shining and its lovely and warm (I am ignoring the excess tingling in my legs) and I am sat behind a desk. Bah humbug. I'm on my lunch break so have decided, seeing as we still have internet access, to post. I know I promised not to but I enjoy it so you'll have to put up with me!!
We moved house on Friday!! It all (give or take the sofa) went really well and we were in with all our gear by 14:00. We actually had a phone call to tell us all the money had been transferred at around 10:00! I never thought it would be that early, I guessed it would be after midday seeing as it took all day to exchange. The movers got everything into the van by midday, after a fight with the sofa lasting around 30 minutes and headed off and we closed B's front door for the final time at 12:15. I picked up the keys and then there we were! The movers unpacked quickly and headed off and Mum and Dad stayed until 17:00 ish to help clean up after the movers, we then unpacked a few bits, went out to get some cable for the Sky box and had fish and chips for dinner.
It was very successful overall. Romans did their jobs and sold both houses quickly, even after our first buyer fell through. My house was sold through Winnersh branch and B's through Reading. They have dedicated sales progressors who are much less annoying than the wide boy valuers and sales people and with plenty of regular pressure did a very good job.
Solicitors, well Willmett and Co, in Woodley were ok. They were fairly useless at chasing things up properly and occasionally didn't read letters properly but with me emailing them every other day the sale went through within a reasonable time scale - about 12 weeks so I am happy enough. I'm sure there are better and worse Solicitors out there and they were reasonable priced for a shared ownership sale.
EJ Winter and Co from Reading were better than Willmetts. They had regular pressure from me throughout the sale, every other day to begin with, and always managed to do what they said they'd do within a good time scale. From getting new buyers to completion was 8 weeks (ish) so not bad at all. We lost 3 weeks with our original buyers but still managed to move only one week later than the original preferred date! All very well done.
Smooth Move did a very good job. Three nice chaps loaded the van and then there was a fourth appeared for unloading. They struggled with the sofa which really didn't want to go out. In the end they took off both doors and the beading around each of the doors.....still it went in the end! They were very helpful and very nice and chatty and were worth every penny! I would quite happily recommend them for removals. Oh, they supplied us with plenty of boxes and packing tape for a deposit which we should get back once we unpack!
Other than that, I have all my paperwork for my new job, just need to sign and send it off and buy another suit.... Only have to one I bought for interviews. I guess I ought to get back to the wedding planning as well.......
My MS has decided to rear its ugly head. I'm not surprised really though. It's been a really stressful couple of months and I am now tired. I haven't slept properly for a couple of days and have worked hard. I now appear to have a touch of ON in my right eye - maybe. I've never had it in that eye before so I am wondering if it is a floater or a problem caused by my stigmatism - which has happened before. My left eye is ok which is great! No change so fortunately I can still see fine with both eyes open! I am hopeing a little rest and relaxation will help, I am starting this evening!!
Waffle over!
We moved house on Friday!! It all (give or take the sofa) went really well and we were in with all our gear by 14:00. We actually had a phone call to tell us all the money had been transferred at around 10:00! I never thought it would be that early, I guessed it would be after midday seeing as it took all day to exchange. The movers got everything into the van by midday, after a fight with the sofa lasting around 30 minutes and headed off and we closed B's front door for the final time at 12:15. I picked up the keys and then there we were! The movers unpacked quickly and headed off and Mum and Dad stayed until 17:00 ish to help clean up after the movers, we then unpacked a few bits, went out to get some cable for the Sky box and had fish and chips for dinner.
It was very successful overall. Romans did their jobs and sold both houses quickly, even after our first buyer fell through. My house was sold through Winnersh branch and B's through Reading. They have dedicated sales progressors who are much less annoying than the wide boy valuers and sales people and with plenty of regular pressure did a very good job.
Solicitors, well Willmett and Co, in Woodley were ok. They were fairly useless at chasing things up properly and occasionally didn't read letters properly but with me emailing them every other day the sale went through within a reasonable time scale - about 12 weeks so I am happy enough. I'm sure there are better and worse Solicitors out there and they were reasonable priced for a shared ownership sale.
EJ Winter and Co from Reading were better than Willmetts. They had regular pressure from me throughout the sale, every other day to begin with, and always managed to do what they said they'd do within a good time scale. From getting new buyers to completion was 8 weeks (ish) so not bad at all. We lost 3 weeks with our original buyers but still managed to move only one week later than the original preferred date! All very well done.
Smooth Move did a very good job. Three nice chaps loaded the van and then there was a fourth appeared for unloading. They struggled with the sofa which really didn't want to go out. In the end they took off both doors and the beading around each of the doors.....still it went in the end! They were very helpful and very nice and chatty and were worth every penny! I would quite happily recommend them for removals. Oh, they supplied us with plenty of boxes and packing tape for a deposit which we should get back once we unpack!
Other than that, I have all my paperwork for my new job, just need to sign and send it off and buy another suit.... Only have to one I bought for interviews. I guess I ought to get back to the wedding planning as well.......
My MS has decided to rear its ugly head. I'm not surprised really though. It's been a really stressful couple of months and I am now tired. I haven't slept properly for a couple of days and have worked hard. I now appear to have a touch of ON in my right eye - maybe. I've never had it in that eye before so I am wondering if it is a floater or a problem caused by my stigmatism - which has happened before. My left eye is ok which is great! No change so fortunately I can still see fine with both eyes open! I am hopeing a little rest and relaxation will help, I am starting this evening!!
Waffle over!
Friday, 28 March 2008
Sex (Mum, you don't want to read this one...)
Sex is a topic that always seems to be talked about anonymously on the MS Society message boards and seems to be something people can be worried about talking about or ashamed. I understand why in most cases but I thought I'd share my experience seeing as it is a fairly common problem for people at some stage or other of their MS.
Originally my problems were isolated to the left side of my torso and my lower legs. Then one morning I woke up and the numb feeling was all the way up to my bum and I was having to check with my hands that I was sat on the loo seat properly, I also felt like I had a permenant 'wedgy' which was really, really annoying!
I realised, having been to the loo that although I could feel the area around my genitals it was not a normal feeling - interesting I thought - but possibly not good. I went to the Dr shortly after this and was referred to a neuro - lucky me, no faffing, no 'its stress' just, go see a neuro.
I'm not sure when my other half and I next had sex but I am a big fan of getting my pleasure in - and I am not that easy to please! Anyway, he had to stop (sore tongue..!) and I couldn't orgasm. I was mortified, couldn't even do it myself. After that I was constantly worrying, did he mind that I couldn't orgasm? Did he mind that I wasn't really interested because I couldn't feel much anyway? I was constantly apologising. He as ever was constantly reminding me that it didn't matter and it would get better or we'd find ways around it. Then I remembered my Rabbit. Now I know some people don't like the Rampant Rabbit idea (trademark Ann Summers....) but when you are a bit numb down there it really works, well for me anyway! Where others failed the rabbit succeeded!
In terms of me not wanting to have sex as much we kind of muddled along, I had gone from dragging him to bed almost nightly for nookie to maybe being up for it once at the weekend. After I was diagnosed we went about two weeks without sex. When I finally pulled myself back together and seduced him into bed we found out that things had obviously affected him as well.
I decided that the afternoons were the best time for me, usually when I got home from work, so I started waiting for him in our bedroom when he got home from work. I'd send him a naughty text when I knew he would be leaving so he'd make sure he came straight home. Still do that now as well! Afternoons during the week and the weekend come to think of it are a great time for us, we're both awake because we've been at work and we get a couple of hours to ourselves, great! I also try and jump on him at the weekends when I am feeling well. It has all been about making the most of feeling well and making time for sex.
Before we would mainly have sex at bedtime, now its anytime we are up for it (within reason obviously!) but still not as often - I think I value the times more often now.
After a couple of months the feeling came back, it has gone briefly since and I don't think it is completely back to normal but we still have a lot of fun and I have a much better appreciation for sex toys!!
General MS stuff - still relapse free, its about a month since I made the declaration and long may it continue!
Anyway, I can't believe I am posting this but if it is of any help to anyone then its worth it, and I really hope my mother hasn't got to this point!
Originally my problems were isolated to the left side of my torso and my lower legs. Then one morning I woke up and the numb feeling was all the way up to my bum and I was having to check with my hands that I was sat on the loo seat properly, I also felt like I had a permenant 'wedgy' which was really, really annoying!
I realised, having been to the loo that although I could feel the area around my genitals it was not a normal feeling - interesting I thought - but possibly not good. I went to the Dr shortly after this and was referred to a neuro - lucky me, no faffing, no 'its stress' just, go see a neuro.
I'm not sure when my other half and I next had sex but I am a big fan of getting my pleasure in - and I am not that easy to please! Anyway, he had to stop (sore tongue..!) and I couldn't orgasm. I was mortified, couldn't even do it myself. After that I was constantly worrying, did he mind that I couldn't orgasm? Did he mind that I wasn't really interested because I couldn't feel much anyway? I was constantly apologising. He as ever was constantly reminding me that it didn't matter and it would get better or we'd find ways around it. Then I remembered my Rabbit. Now I know some people don't like the Rampant Rabbit idea (trademark Ann Summers....) but when you are a bit numb down there it really works, well for me anyway! Where others failed the rabbit succeeded!
In terms of me not wanting to have sex as much we kind of muddled along, I had gone from dragging him to bed almost nightly for nookie to maybe being up for it once at the weekend. After I was diagnosed we went about two weeks without sex. When I finally pulled myself back together and seduced him into bed we found out that things had obviously affected him as well.
I decided that the afternoons were the best time for me, usually when I got home from work, so I started waiting for him in our bedroom when he got home from work. I'd send him a naughty text when I knew he would be leaving so he'd make sure he came straight home. Still do that now as well! Afternoons during the week and the weekend come to think of it are a great time for us, we're both awake because we've been at work and we get a couple of hours to ourselves, great! I also try and jump on him at the weekends when I am feeling well. It has all been about making the most of feeling well and making time for sex.
Before we would mainly have sex at bedtime, now its anytime we are up for it (within reason obviously!) but still not as often - I think I value the times more often now.
After a couple of months the feeling came back, it has gone briefly since and I don't think it is completely back to normal but we still have a lot of fun and I have a much better appreciation for sex toys!!
General MS stuff - still relapse free, its about a month since I made the declaration and long may it continue!
Anyway, I can't believe I am posting this but if it is of any help to anyone then its worth it, and I really hope my mother hasn't got to this point!
Wednesday, 19 December 2007
Symptoms....!
I am now back in the office, went in on Tuesday as I had a late night Saturday, plus I over did the old sauce and then didn't sleep well Sunday so decided against going to work Monday. I know, bad but hey.....
The girls (and guy) in the office are already being great. I am doing things at my own pace (slow as if I am too efficient I will run out of work to do) and have high jacked a nice desk as its usual occupant is away until after New Years. Having said that I have been out of the office for a few hours due to the station food shopping expedition (thank you Tesco for giving us £10 off our Christmas food bill!!) and an appointment with a nurse. I have also been given two Christmas pressies and a card since I started on Tuesday, doing well!!
My legs already feel better, I think that may be because my feet aren't so cold so the circulation is better and therefore I can feel more but my hands still feel funny and I drop things like paper if I don't concentrate on picking it up (most of the time).
I got my DVLA notice of revocation today, fortunately they are revoking my license and giving me a 3 year renewable license with a 1 year renewal of my LGV license (the one I need to drive ambulances) so although its a bit of a pain and I wish it wasn't the case it came as a relief to see that they were letting me keep the LGV. I burst into tears at the time, not sure why, either relief or sadness. I am guessing relief. I think I had forgotten about the DVLA question but it was obviously sat nagging somewhere in there. Still, will pop the form in the post tomorrow so hopefully my new license will appear soon.
I thought I would add my symptoms log to this blog...... Its a very boring read I expect but if anyone out there is wondering if you're the only one then it might help, you never know.....
1st episode – numbness to left side of torso, approx February 2006 lasting around 3 – 4 weeks.
2nd episode – numbness to left side of torso and strange ‘stretching’ sensation in spine (when bending/leaning forwards), approx October 2006 lasting around 3 – 4 weeks.
3rd episode – started end January 2007.
Right arm – underneath, change in sensation from armpit to tip of little finger, finger and right side of middle finger. Slight pins and needles sensation to fingers. End Jan 2007.
Around 11.02.07 – Both legs altered sensation and slight pins and needles.
24.02.07 – Right leg worsened and change in sensation to buttocks and genitalia.
08.03.07 – GP appointment, took self off the road.
12.03.07 – Occupational Health appointment.
24.03.07 – Vision in right eye – looking to right blurred.
03.04.07 –Appointment Capio Hospital
Around 08.04.07 – Right leg and buttocks slightly better.
14.04.07 – Right eye 99% better.
16.04.07 – Occupational Health appointment – Closing case until I need to see them again.
09.05.07 – Left eye hazy vision and pain in and above eye. Pain worsened on eye movement.
18.05.07 – Left arm underneath numb from armpit to ends of fingers. Left side of torso numb from above breast to level of navel.
20.05.07 – both legs tired no change in sensation. Lasted two days.
21.05.07 –Appointment RBH Dr
22.05.07 – Left eye pain free.
24.05.07 – Left eye vision a lot better (90%). (off work for 2 days)
27.05.07 – 1st day no pain killers taken.
29.05.07 – Back at work, left eye worsens during day when using computer.
31.05.07 – Short day at work due to tiredness.
Around 08.06.07 – 21.06.07 - ‘Stretching’ sensation in spine when bending/leaning forwards.
25.06.07 – Appointment Dr Weir – MS Nurse to call re Rebif. MS diagnosis confirmed.
10.07.07 – Appointment JR Oxford for EEG
16.07.07 – Appointment Adastral/MS Nurse
19.07.07 – License to DVLA
23.07.07 – Back to work
Tonight I am sitting on the sofa reading emails and eating chocolate, as of January 2nd I will have to stop eating as much chocolate as I am changing my eating habits so am making the most of it!!
The girls (and guy) in the office are already being great. I am doing things at my own pace (slow as if I am too efficient I will run out of work to do) and have high jacked a nice desk as its usual occupant is away until after New Years. Having said that I have been out of the office for a few hours due to the station food shopping expedition (thank you Tesco for giving us £10 off our Christmas food bill!!) and an appointment with a nurse. I have also been given two Christmas pressies and a card since I started on Tuesday, doing well!!
My legs already feel better, I think that may be because my feet aren't so cold so the circulation is better and therefore I can feel more but my hands still feel funny and I drop things like paper if I don't concentrate on picking it up (most of the time).
I got my DVLA notice of revocation today, fortunately they are revoking my license and giving me a 3 year renewable license with a 1 year renewal of my LGV license (the one I need to drive ambulances) so although its a bit of a pain and I wish it wasn't the case it came as a relief to see that they were letting me keep the LGV. I burst into tears at the time, not sure why, either relief or sadness. I am guessing relief. I think I had forgotten about the DVLA question but it was obviously sat nagging somewhere in there. Still, will pop the form in the post tomorrow so hopefully my new license will appear soon.
I thought I would add my symptoms log to this blog...... Its a very boring read I expect but if anyone out there is wondering if you're the only one then it might help, you never know.....
1st episode – numbness to left side of torso, approx February 2006 lasting around 3 – 4 weeks.
2nd episode – numbness to left side of torso and strange ‘stretching’ sensation in spine (when bending/leaning forwards), approx October 2006 lasting around 3 – 4 weeks.
3rd episode – started end January 2007.
Right arm – underneath, change in sensation from armpit to tip of little finger, finger and right side of middle finger. Slight pins and needles sensation to fingers. End Jan 2007.
Around 11.02.07 – Both legs altered sensation and slight pins and needles.
24.02.07 – Right leg worsened and change in sensation to buttocks and genitalia.
08.03.07 – GP appointment, took self off the road.
12.03.07 – Occupational Health appointment.
24.03.07 – Vision in right eye – looking to right blurred.
03.04.07 –
Around 08.04.07 – Right leg and buttocks slightly better.
14.04.07 – Right eye 99% better.
16.04.07 – Occupational Health appointment – Closing case until I need to see them again.
09.05.07 – Left eye hazy vision and pain in and above eye. Pain worsened on eye movement.
18.05.07 – Left arm underneath numb from armpit to ends of fingers. Left side of torso numb from above breast to level of navel.
20.05.07 – both legs tired no change in sensation. Lasted two days.
21.05.07 –
22.05.07 – Left eye pain free.
24.05.07 – Left eye vision a lot better (90%). (off work for 2 days)
27.05.07 – 1st day no pain killers taken.
29.05.07 – Back at work, left eye worsens during day when using computer.
31.05.07 – Short day at work due to tiredness.
Around 08.06.07 – 21.06.07 - ‘Stretching’ sensation in spine when bending/leaning forwards.
25.06.07 – Appointment Dr Weir – MS Nurse to call re Rebif. MS diagnosis confirmed.
10.07.07 – Appointment JR Oxford for EEG
16.07.07 – Appointment Adastral/MS Nurse
19.07.07 – License to DVLA
23.07.07 – Back to work
30.07.07 – Eye check – all ok
13.08.07 – 1st Rebif injection 8.8
24.08.07 – Left side of torso, inc back numb between breast and navel.
27.08.07 – Rebif 22
04.09.07 – Left work early – migraine
09.09.07 – ON Left eye, very little pain
10.09.07 – Rebif 44
17.09.07 – Bladder playing up slightly, vision worse, not driving ambulances
24.09.07 – 1 week off sick. Not coping with ON or tiredness, no pain with ON
01.10.07 – Bladder behaving
10.10.07 – Left work early, migraine
12.10.07 – Lost the plot, crying at work
16.10.07 – Appt, Sarah, RBH
22.10.07 – Left eye 98% better most of the time, worse in the morning and when tired
24.10.07 – Occi Health appt and Flu jab
06.11.07 – Burning sensation in left leg, knee and thigh, moved to right leg
14.11.07 – Bloods taken RBH A&E
16.11.07 – Burning sensation back to just left leg
20.11.07 – Sensation in both legs back to normal except when legs tired
21ST NOVEMBER 2007 - SIX MONTHS SINCE DIAGNOSIS
28.11.07 – L’Hermittes sign
04.12.07 – Change in sensation in legs up to waist, inc genitalia….. Torso slightly worse, left eye same
12.12.07 – Right leg worse than left, went to work but got sent home
13.12.07 – Change in sensation to little finger, ring finger and side of both hands
17.12.07 – On light duties
Tonight I am sitting on the sofa reading emails and eating chocolate, as of January 2nd I will have to stop eating as much chocolate as I am changing my eating habits so am making the most of it!!
Wednesday, 12 December 2007
Going backwards.....
Went to work this morning despite feeling horrible and knowing that the feeling in my legs is getting gradually less and my balance is getting worse. I nearly rang in sick but thought, one more shift then I can get home and lie on the sofa for 4 days. When I got to work I kept thinking I shouldn't be there, and then when it came to starting work I ended up in tears and talking to my station officer. I am now on a couple of days sick and will go back to work on Monday on light duties, back to the same office I was in last time.
My legs feel the same as last time when they were bad but I haven't had the gradual change in sensation as last time, things have got worse very quickly. Still I'll spend some time on light duties, hopefully get better and get back to it. I think I'll have a proper think about what else I can do in terms of a job over the next few weeks. I have been thinking about it loosely over the last month or so but I haven't got anywhere.
So anyone any ideas.......I would like to work shifts but not nights and not past midnight and would like to get out and about but not as much as this job....... Ah well, I think I am employable so will find something if I have to!
My legs feel the same as last time when they were bad but I haven't had the gradual change in sensation as last time, things have got worse very quickly. Still I'll spend some time on light duties, hopefully get better and get back to it. I think I'll have a proper think about what else I can do in terms of a job over the next few weeks. I have been thinking about it loosely over the last month or so but I haven't got anywhere.
So anyone any ideas.......I would like to work shifts but not nights and not past midnight and would like to get out and about but not as much as this job....... Ah well, I think I am employable so will find something if I have to!
Monday, 1 October 2007
Now a weeks leave!!!
Following my week off work sick my vision is starting to get better. I drove for the first time since last Sunday yesterday (6 days!!) and hardly noticed the fact that my vision isn't 100%. I've been getting around 10 hours sleep a night and have done very little! I went for a walk on Thursday down to the shops, out for about an hour and a half but shopping in between. Was extremely tired that evening.......!!
S rang after speaking to my neuro, she said that the fact the pain has gone means that it should be getting better so no steroids - which I am pleased about. The decision being taken out of my hands was the ideal thing to happen! She wants to see me in clinic in a couple of weeks time, not sure why, we will see!!
B and I had a BBQ for friends Sat night. Nothing special just a few friends, some BBQ food and a few drinks. Everyone left before midnight so was a quiet evening!!
So this week while I am on leave I will be continuing the theme from last week! Doing very little, hair cut and seeing my parents, Drs appt, band rehersal and hopefully an indian meal and catch up with a friend I haven't seen in a while!
S rang after speaking to my neuro, she said that the fact the pain has gone means that it should be getting better so no steroids - which I am pleased about. The decision being taken out of my hands was the ideal thing to happen! She wants to see me in clinic in a couple of weeks time, not sure why, we will see!!
B and I had a BBQ for friends Sat night. Nothing special just a few friends, some BBQ food and a few drinks. Everyone left before midnight so was a quiet evening!!
So this week while I am on leave I will be continuing the theme from last week! Doing very little, hair cut and seeing my parents, Drs appt, band rehersal and hopefully an indian meal and catch up with a friend I haven't seen in a while!
Tuesday, 25 September 2007
Gave in.
So on Saturday morning I drove round to my flat and thought, I really shouldn't be driving. I drove again Sunday afternoon and thought the same, therefore Sunday evening I bit the bullet and called in sick. I have emailed S and she is going to talk to my Neuro and I think I may be offered steroids, I don't really want steroids but then I don't want to be off work for long. The good thing is everyone seems to agree that taking time to get better is a good idea and to continue going to work when I can't see properly through my left eye is a bad idea. I still feel bad about not being at work but I seem to feel much more at peace now I have made that decision and am not worrying about whether I should really be at work.
Went out for lunch with a friend today. She came and picked me up and we had a quick bite in town. I am now finding it more difficult to read without becoming distracted by the fuzzy bit to the left of my vision.... Still it was a nice lunch and I enjoyed catching up with A. She has had plenty to deal with over the last couple of years and things are finally sorting themselves out - I am really really pleased for her!
I am having my flat valued this evening, have to wait for B to get home and take me over there and Mum and Dad are popping over to do a couple of bits as well. Must remember to take some tea, coffee and milk over.
Since our weekend in Bristol B and I have decided that a 'dirty' weekend away would be a really nice idea so we are planning away, hopefully in the near future and within a couple of hours drive away. Can't wait!!
Went out for lunch with a friend today. She came and picked me up and we had a quick bite in town. I am now finding it more difficult to read without becoming distracted by the fuzzy bit to the left of my vision.... Still it was a nice lunch and I enjoyed catching up with A. She has had plenty to deal with over the last couple of years and things are finally sorting themselves out - I am really really pleased for her!
I am having my flat valued this evening, have to wait for B to get home and take me over there and Mum and Dad are popping over to do a couple of bits as well. Must remember to take some tea, coffee and milk over.
Since our weekend in Bristol B and I have decided that a 'dirty' weekend away would be a really nice idea so we are planning away, hopefully in the near future and within a couple of hours drive away. Can't wait!!
Tuesday, 11 September 2007
Feeling Sorry For Myself..........
I have felt pretty awful since Tuesday last week. I had to leave work early on Tuesday - an overtime shift - which I have never done before. I hadn't stopped for over a week and a half until yesterday. I have had headaches, migraines and felt generally yucky. Yesterday everything got too much. I was ok to begin with, then got a nasty headache and started feeling very sorry for myself. Nearly in tears a few times throughout the day, especially when B got home. Not his fault, I just worry a lot about the fact that I seem to be lurching from one thing to the next at the moment.
He keeps telling me that he loves me and wants to be with me but I can't help thinking why would he want me? I seem to spend half my time not feeling well, I get through work and then end up tired on the sofa, or in bed early. When I put my sensible head on I think well actually I was fine until I relapsed again, going out for dinners, cinema etc It doesn't make it any easier though. I have this constant nagging going on in the back of my head. I also don't want to keep saying it to him as I will start sounding like a broken record. I hate feeling like I need something, even if it isn't all the time.
What really prompted all this was waking up Sunday morning and realising that I have Optic Neuritis. I got through Sunday, I had to. Told D at work, told B in the evening and then woke up Monday morning and had to deal with it on my own. Its not bad, no real effect on my vision and mild pain. Nothing like last time, its just too close to being something that could take me off the road again, which scares me. There it is I am scared. Scared of loosing B, scared of not being able to do my job, scared about the future, just plain scared. I guess when this relapse clears up I will be back to my normal self - just feeling very sorry for myself at the moment.
On a lighter note B's parents visited at the weekend. I was at work both days but made it home at a reasonable time. We went out for dinner Saturday night and B cooked Sunday night. We are meeting them in Bristol next weekend for a nice meal so that should be good as well. B's Mum did some weeding which really needed doing! B and his Dad put up the shelves in the shower, typical Man thing with the instructions but they got it up in the end!!
I had my first full dose of Rebif yesterday morning, 44. I had a headache in the afternoon which may or may not have been caused by the Rebif, I will keep an eye on things. I took it in the morning as I am at work Wed evening and don't really want to be taking the high dose at work, just in case I have any problems. If I get through this week ok I will start taking it at work again.
So all in all some good times and a fair few bad times this last couple of weeks. I will pull myself together at some point.
He keeps telling me that he loves me and wants to be with me but I can't help thinking why would he want me? I seem to spend half my time not feeling well, I get through work and then end up tired on the sofa, or in bed early. When I put my sensible head on I think well actually I was fine until I relapsed again, going out for dinners, cinema etc It doesn't make it any easier though. I have this constant nagging going on in the back of my head. I also don't want to keep saying it to him as I will start sounding like a broken record. I hate feeling like I need something, even if it isn't all the time.
What really prompted all this was waking up Sunday morning and realising that I have Optic Neuritis. I got through Sunday, I had to. Told D at work, told B in the evening and then woke up Monday morning and had to deal with it on my own. Its not bad, no real effect on my vision and mild pain. Nothing like last time, its just too close to being something that could take me off the road again, which scares me. There it is I am scared. Scared of loosing B, scared of not being able to do my job, scared about the future, just plain scared. I guess when this relapse clears up I will be back to my normal self - just feeling very sorry for myself at the moment.
On a lighter note B's parents visited at the weekend. I was at work both days but made it home at a reasonable time. We went out for dinner Saturday night and B cooked Sunday night. We are meeting them in Bristol next weekend for a nice meal so that should be good as well. B's Mum did some weeding which really needed doing! B and his Dad put up the shelves in the shower, typical Man thing with the instructions but they got it up in the end!!
I had my first full dose of Rebif yesterday morning, 44. I had a headache in the afternoon which may or may not have been caused by the Rebif, I will keep an eye on things. I took it in the morning as I am at work Wed evening and don't really want to be taking the high dose at work, just in case I have any problems. If I get through this week ok I will start taking it at work again.
So all in all some good times and a fair few bad times this last couple of weeks. I will pull myself together at some point.
Sunday, 2 September 2007
Now on 22!
Well I have been on Rebif, 22 for a week now. I have had no problems that I can attribute to the drug, which is great. I didn't sleep well Monday night but I can't put my finger on why, and I felt ill on Wed, but again I can't put my finger on what was wrong. No problems Wed night and no problems Fri night. I actually injected at work Fri night and worked the remaining 9 hours of my shift without a problem - really hope this continues with the 44!
On the down side I appear to be relapsing again. The left side of my torso is numb between my breast and navel. I didn't expect it so soon after the last one finished but I guess the timescales are right. I am just keeping my fingers crossed that the Rebif helps slow them down. I felt pretty bad once I realsised I was numb again. Found it a little 'depressing' and it hit home that yes it is going to keep happening, nothing I can do about it, other than try to keep healthy and take the drugs. I have MS.......
Work is good, I am on my 3rd night shift and surviving! Was on my own Fri night, first time in a long time. Quite enjoyed it really, although I was bored. Still D has been back for these last 2 nights. We are back on our rota on Mon for 2 weeks which will be nice, then over to Windsor for 2 weeks. It is working out well though as I have a couple of extra weekends off! Woo hoo!!
On the down side I appear to be relapsing again. The left side of my torso is numb between my breast and navel. I didn't expect it so soon after the last one finished but I guess the timescales are right. I am just keeping my fingers crossed that the Rebif helps slow them down. I felt pretty bad once I realsised I was numb again. Found it a little 'depressing' and it hit home that yes it is going to keep happening, nothing I can do about it, other than try to keep healthy and take the drugs. I have MS.......
Work is good, I am on my 3rd night shift and surviving! Was on my own Fri night, first time in a long time. Quite enjoyed it really, although I was bored. Still D has been back for these last 2 nights. We are back on our rota on Mon for 2 weeks which will be nice, then over to Windsor for 2 weeks. It is working out well though as I have a couple of extra weekends off! Woo hoo!!
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