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...!).

The unbearable cuteness of kittens

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The unbearable cuteness of kittens
Originally uploaded by bryanrobson

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!

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!!

Tired = Migraines = naff week.......

I've had a somewhat busy couple of weeks which I think may have led to my being totally exhausted for all of this week.

Lat Friday was the Unum Summer Party, which was very good, had a couple of drinks but not too much - we had £40 worth of drinks vouchers between us - generous company! We went to our hotel room at around 12:30 which is really very late for me and were then up and out by 09:00 for shopping and getting home as we were expecting a bed delivery from Argos.

We then managed to get quite a lot done over the rest of the weekend, cleaned out Plum and the fish - they really needed a clean! We also painted the 3rd bedroom, Mum came over and helped as well! After all that I felt alright but this last week has just been really, really hard work.

Had a migraine on Monday but I got rid of that and had my first ever golf lesson! We had dinner out after that so got back half 9 ish - when I went to bed. Felt ok, if tired on Tuesday but had to go to Dorking for the day. The drive was quite tiring but on the way back I took the opportunity to pop into Bracknell Ambulance Station. There were loads of people there so it was really great to see everyone. Only problem was that on Wednesday when I got home from work having had another migraine, having a headache and being really, really tired I ended crying about what I'd left behind, the migraines, the fact that I was crying and feeling ill AGAIN and why would B want to be with me. All that sort of fun stuff. I was just very very tired and felt much better after getting some sleep. I've been in bed by 20:30 for three nights in a row now so am catching up slowly.

So all in all a pretty naff week. I have emailed my neuro about getting some medication to try and prevent the migraines - from posting on the MS Society board beta blockers look like they might be the way forward, but I will wait for Dr W's advice.

We are out tonight at a friends Wedding Reception but I don't plan to be out late and as I am driving I can leave when I like!! I have decided a short trial without alcohol may be a good idea to see if there is any reduction in migraines/headaches. I started a week ago after the Summer Party and will drink again on the CAMRA Beer Festival we are attending at the beginning of August. May also be good for the weight loss!

Anything else interesting? Work is going well although it is going to take some time for me to adjust to a desk job. I had an ergonomic assessment on Monday and will probably be getting a new chair if not a couple of other things. We are going to organise another meeting to discuss both reports and then include my line manager. Other than being tired I'm not having MS problems which is great - just need to get a handle on the migraines.......

Rebif/Bon Jovi

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

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

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

So all in all a big thumbs up from me!

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

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

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

So brilliant!!

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.......

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!

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!

Move-day!!

Well move day is rapidly approaching and we appear to be more or less ready for it! We will be without broadband for a while so no blogging or reading of blogs at home and work will have put the filters in place to stop us looking at anything that, well anything......

Weight watchers this week was better than expected but that is all I am saying - I am starting again on the 7th May!

My MS is behaving itself still and I have had no letters telling me to stop taking Rebif, all good at the moment!!

Right, hopefully I'll have lots to report on next time I write :o)

Weight Watchers Week 7

Having decided to go on Wednesday this week due to a few things I was a bit worried I hadn't done very well. I was wrong! I lost 3.5lb getting my first 'silver 7' and reaching the dizzying heights of 9lb lost! I thought the trousers I put on today felt a little looser.......

Other than that, the houses seem to be going well. Completion on my place is imminent, we exchanged last week - I will have money again!! B's should exchange sometime next week and complete sometime soon after fingers crossed.

I should be getting the new formulation of Rebif in my delivery next week. I have high hopes that it won't sting as much as the old one, especially, in my case, in my thigh. It is stinging as I type..... Bit late tonight on the stabbing. I forgot to get it out of the fridge this morning as I was on leave today (for reasons I will be able to explain at some point) so out of my routine and then forgot this evening, again routine and by the time I remembered to get it out of the fridge it was 8pm and I then had to leave it an hour.......still I have no plans for Friday so it doesn't matter if I do it late.

I am still well, coming to realise that I feel soooo much better when I don't drink alcohol the night before so it is really not worth it, but in general I am fine. Still have the same left over bits as before but its all ok.

Oh and I have an appointment with HR and my manager in a couple of weeks to discuss the Occi Health report......should be fun!

Weight Watchers Week 6 - The peanut butter and jelly sandwiches week.......

I had a few rounds of the above sandwiches and guess I shot myself in the foot a little bit..... My excuse is that I had a migraine and felt the need to eat badly! I lost 1lb so thats 5.5lb in total. Not as good as I was hoping but then I haven't been as good as I could be. I will be better this week!

On Saturday night we were invited to Newbury Manor Hotel for a mini wedding fair of all their preferred suppliers. We met the lady who will do our flowers, I chatted to the local hairdressers and we met the new wedding planner. H the previous wedding planner for the hotel is going off to Australia for a year so an ex wedding planning of the hotels who has set up her own business, Essentially You, is taking over. J is very nice and as she used to work at Newbury Manor I'm sure things will go very smoothly!

It was really nice to go out and do some wedding related stuff, its all been house related recently. They even put on some food on (which was very nice, with some very nice desserts) and there were four wines to taste - I tasted rather a lot of the red wine. Ah, that evening may well be part of the reason my weight loss was a bit less than hoped for......still it was a nice weekend out!

Houses - who knows..............

Weight Watchers week 3

Good morning all. Well I weighed in at one pound less last night. Not bad considering I ate out three times. I met a friend for dinner Wednesday and had grilled Seabass and then the weekend was B's Birthday so I took him out for dinner Friday evening and we went out and watched the rugby Saturday and then had a curry.

http://www.hall-woodhouse.co.uk/index.asp

On Friday night I took B to a new 'Gastro pub' on the Peacock Farm development in Bracknell, called Peacock Farm strangely enough. It serves Badgers beer and the meals we had were very good. You can search for Hall and Woodhouse Pubs via the link above (one day I will find out how to do pretty links). I would thoroughly recommend eating and drinking at Peacock Farm, the food is good pub food and is reasonably priced and the beer is well kept (apparently) and very tasty (from experience!!). Two courses and drinks for two cost around £40. You must remember to book though. It is probably the fact that it is new but if you want lunch or dinner any day of the week you have to book.

I seem to be stable with the MS symptoms at the moment. I occasionally get slight worsening, usually when I am tired (like now) and am feeling like my legs are really struggling to get my body up stairs. Having said that a combination of MS, weight and lack of exercise are probably causing that.......

I have an annual review appointment in June, sent through by the hospital with no prompting from me! I gues my MS Nurse may have had something to do with it but I am so pleased I am under a Neurology Department that seems to get things done. Oh another MS related thing, I had a letter cc'd to me by my Neuro and it seems that my liver enzymes (guessing its them) have risen slightly. I have to have an extra blood test in a month to check on them and I am hoping its just a blip and they stay put or go down again. I know it is a side effect of Rebif and apparently fairly common at that but I am a little concerned because I am getting on well with Rebif and would prefer not to change.

Still we shall see.......

Additional....

Following our weekend away where I was deprived of sleep due to the snoring I seem to have developed a cold. I am blaming it on B for keeping me awake but now I appear to have given it to him we are all square!!

It is Mothers Day today and we are supposed to be going to Mums to have dinner but I am a bit worried as Nan is due to have an operation on the 10th March and I don't want to give her anything.......

We will see!

Round up

I’ve been meaning to do this since the beginning of January, write a post which summarises the last year for me. A year that has been so hard yet also so wonderfully good!

It all started in January 2007, the 6^th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/chiropractor for my back but no referral to a neurologist.

The wait for an appointment on the NHS was too long so my very kind parents paid for me to get one privately. Around a month later I was sat in a very nice room at the Capio hospital in Reading with a nice lade Neurologist. She did lots and lots of little tests and said that the problem I had developed with my right eye was also related to what was going on. She said that they had to bear in mind Multiple Sclerosis and cancer but that it may be an isolated incident of inflammation and was going to send me for an MRI. To be honest I went away from that appointment unconvinced and still assuming they would find a problem with my back.

I had a quick look at the MS Society website but decided to leave the research until someone told me what my problem actually was.

In the intervening time I had a few different symptoms including optic neuritis and the involvement of my left arm. I then had my MRI on the 16^th May 2007. My neuro had kindly rung before hand to let me know that she was in x-ray the next evening so would look up my results and give me a ring. She did and said that there was inflammation on my scan and that she would like to see me on the Monday (21^st) around 10am but that her schedule was full so couldn’t say exactly when I would be seen.

So at 10am on Monday the 21^st May 2007 I was seen and told that I have MS. I held it together for the majority of the appointment but Mum was there (as she was at all my appointments) so took some of it in as well. Mum had to ring B and tell him because every time I thought about telling him I burst into tears! I went to work for a few hours the next couple of days but in the end I decided that I felt terrible (probably because of the steroids) and I would take the last two days off.

I had an appointment with the MS specialist and had VEP/SEP tests done. I also saw my MS Nurse very quickly and was on DMDs by the middle of August. Looks like West Berkshire does a reasonable job!

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

Since then things got better, I went back to work at the end of July and apart from a bit of tingling in my feet and legs when they got too hot I was back to normal. Unfortunately a month later I started relapsing again. It involved my torso and left eye initially. I had a week off when the optic neuritis was at its worst but other than that I just about managed to work. On the 17^th December the relapse took hold of my legs properly and I had a mini-melt down at work before having to go onto light duties again. Over the next couple of days my hands started to go numb and I started getting slight pains in my right hand during the night and when typing. Nothing horrendous.

I am still off the road, although a lot better. I have worked full time throughout and have managed to have a life outside of work, which I haven’t really had since going back on the road.

B and I got engaged on the 5^th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!

That's a terrible summary but it would go on forever.......

Catch up

Wow, how things move on. I don’t seem to have stopped for ever……. After B proposed we started looking at venues and getting round to telling everybody and then actually went to view a load of venues. We chose Newbury Manor Hotel, Newbury (doh) for a date in May 09, all booked and deposit paid. As soon as that was done I told everyone where it was and showed then the info and mentioned the no kids thing…. This bit went down better than expected but I can tell that my Nan wasn’t impressed. I think she was also disappointed that we are having a Civil Ceremony and not a Church one. Still people on the whole seem happy enough. I’ve had a few interesting conversations with my Mum about the guest list but we have come to an agreement, they pay for the wedding and they get to invite a few extra people. I thought that was a reasonable deal!! (Mum if you are reading this we are planning on adding money to the pot, promise!).

So after all that and the panic associated with having to wait until the next day to book it with the Wedding Coordinator and possibly losing the date we wanted, we started on the house front.

Mine seems to be coming together. The buyer is approved and all the paperwork should have gone in the post yesterday. I am definitely thinking that the end of March is possible!! Such a relief…….. B’s went on the market on the 31st January, the for sale sign went up on the 6th February and we had several offers by the end of the day on the 8th February. We accepted an offer from a first time buyer and the contract is already signed! We have been looking for the last week and a half or so. We have had several intensive evenings and an intensive weekend and viewed around 20 properties. We eventually walked into a property (that was on the market for 20k more than we could really afford) that we really loved and we put an offer in. It took all day but the offer was accepted at 5k more than we really wanted to spend but it’s a lovely house!

So after all of that I woke up today feeling really quite rotten….. B and I haven’t been in for the evening for a log time (well it feels like that) and I think my body knows it doesn’t have to do anything much today. The relief of getting those two things sorted has been immense; having said that I am assuming it’ll get worse close to completion time.

My MS seems to have behaved itself throughout though! I have the same little niggles and I guess a little more pain in my hand than I had before but nothing has got significantly worse. I count this as a bonus! I think as a result of having a very busy life I have been forgetting my date with a needle occasionally. I forgot Mon a few weeks ago and I forgot Mon this week as well. Still not a big panic as I just took it Tues, Thurs, Sat instead of Mon, Wed, Fri. Any other news for this catch up post? Nope don’t think so, I haven’t heard from Occi Health re my fitness for my job yet so I am still working at HQ.

That’s about it! Oh, feeling better and happier overall (ignoring today) than I have an a long time!!

Good News!

I am writing this on Tues for posting either at the weekend or Mon as I need to be sure certain people don't read it.

B asked me to marry him on the 5th January! We had been out for dinner to celebrate knowing each other for a year, afterwards we were snuggling on the sofa with wine and he asked me, I obviously said yes! We went shopping for the ring the next day, its not as expensive as its supposed to be (according to whatever % of the blokes salary it is supposed to be) but I think it is lovely.

We went round to Mum and Dads as soon as the ring arrived a week later and we went up to Brid, planned visit, this weekend to tell B's parents. So all the family have been told and most of my important friends, just B's friends to tell now! Its so much more real when you start telling people, and obviously when you get the ring on your finger! So far I have a few places to visit and would really like to get a venue booked as we are looking at May 2009 for a date which will apparently get booked up quick!

As for other things, our trip to Bridlington was good, although I wasn't very well on the way up there and we hit a queue a bit after J28 of the M1 so after a couple of mad dashes for the loo we decided that staying in a hotel was the best plan so we went back to one we had seen and set up camp for the night. I didn't get much sleep over the next couple of nights and as a result I am feeling shattered and have had headache after headache, hence why I left work at 1pm today and still have a horrible headache.

My symptoms are worse - L'Hermittes is reaching new levels of annoyance......... Still when I don't have a headache things aren't too bad. Although having never worn a ring before my ring finger feels very very strange, made worse by the fact I can't feel my hands properly still! Good strange though!!

I think thats about it for today (Tues 22nd by the way), oh saw my MS Nurse last week, nothing much to report, carry on as normal for now, oh the joys of MS!

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!

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!!

Together a bit!

Well since my last post I have pulled myself together a bit! Feeling much happier now although still tired and finding work hard. I am wondering whether I need some time off, I don't really want to but I think I might have to take a couple of weeks to myself, just to catch up!

I had a really good weekend in Bristol with B and B's parents. We had did the Bristol Bus Tour in the afternoon and then had a really nice dinner at a place called SevernShed. B raved about his meal so I guess it was really very good. I really enjoyed my dinner but for B to rave!! B's Mum seemed to like her presents and enjoyed her holiday so all in all a 60th Birthday success!! On the Sunday it was the Open Water Event which went well considering! About half the number of people turned up this year but that was to be expected after the July postponement. I was extremely tired afterwards and collapsed in a heap when I got home!

The injections are going well still, have had no problems with side effects or bad injection marks. My relapse is still hanging around, I can cope with the torso still its just annoying but my left eye is becoming a problem. I was single manned last night and had to split another crew so I didn't have to drive. This is one of the reasons I think I may need a week off........

As for work, I have had some good jobs recently and some fairly naff ones. Picked up a lady having an MI last night. She was absolutely fine the whole time she was with us. A little pale to begin with but on oxygen she started to pick up and her pain reduced. We took her straight to the hospital, where we were it wasn't worth waiting for a Paramedic, from arrival at scene to arrival at hospital it was 30 minutes, 36 minutes from call to hospital. Once we arrived at hospital they prepared to Thrombolyse, as they were putting the drug in our pt arrested, causing a major panic (not what I expect from a Cardiac Care Unit), I was asked (well screamed at) to put the crash bleep in, which I did, and after the arrival of a few more staff things started to look more organised and they managed to get a heart beat back.

I have no idea what the outcome was, we had to leave and get back to work. Unfortunately me being me I now wonder what I could have done quicker to get the pt in quicker. We were in the house just over 10 minutes, did the 12 - lead in the back and left, going very quickly, for the hospital.

Still, I will beat myself up for a day then sort myself out. Seem to spend most of my time trying to pull myself together at the moment, ah well, such is life!!

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!