Regretably wrote a letter today to GOM's neurologist in London asking to cancel his next appointment on 18th July and for a referal to a neurologist at our local hospital.

The National Hospital of Neurology and Nervous diseases (NHNN) is the recognised 'centre of excellence' for MS and other neurological problems. It was very convenient to go there when GOM was working, however the last 4 years since he retired in 2000 have been increasingly difficult. At first we could still get public transport (train and bus), but the timing of our appointments always meant we got caught in the london 'rush hour'. Then we asked for the appointments to be switched from winter to summer months so that the neurologist could see how the heat was affecting him, but this resulted in having to get a taxi last year for an emergency visit. We didn't get much change out of £100. We were able to arrange hospital transport for the next visit, but this is very hit and miss and with 12 months between appointments it wasn't possible to arrange this time.

Then with the recent developments with the fatigue we took the decision that even if we could arrange a car, it was going to be difficult for GOM to get out, so we wrote the letter. Post it tomorrow.

We've had a recommendation of a neurologist from one of our local MS group, but don't know if we'll be able to get him or not. He's not based at the nearest fo the hospitals in our local group, but it will still be a lot cheaper than going to london. An d we already have connections with the local hospital MS rehab team, so it should tie up quite nicely

This time last year....... ah well. Second 'consecutive' hydrotherapy session today. Fatigue has cut in a bit quicker today though. GOM needed help from the top of the stairs and into the flat then had to 'retire to bed' during the afternoon. Hopefully should all be well tomorrow and we're trying another pool session on Thurday. We're still at the 'suck it and see' stage, we don't know what's going to be too much and what's goint to be enough to help him. We're trying to find a balance between the 'cooling' effect of being in the water with the extra exercise that's being done walking up and down the pool. We used to only do it once a fortnight, but now we're trying for twice a week!!!

Grumpy's mobility still pretty good, but then again the weather is still quite cool. Didn't need the fans on yesterday and got through the night without either having to 'shed the duvet' or turn on the bedroom fan.

We both got out this morning and sat in the riverside park to drink our tea. Also broke with 'tradition' and picked up some supplies at the supermarket. We would normall shop on monday after noons, but our revised schedule of morning trips only means that it would clash with the visit of our crossroads care attendant.

All being well I'll have another trip up to the flat that we want to sell in London, and get some more cleaning up done. Also I may be able to spend a little more time up there as I won't have to rush back for the shopping trip

Yesterday's session of hydro therapy may have done some good. We went out this morning to do our shopping and so far grumpy's still able to get around under his own steam. It is a bit cooler as well, so it's difficult to tell which has helped.

His appetite is still affected - we would normally have an indian or chinese on Friday's but he reckons he's OFF 'spicy' food. Alchohol is also off but for different reasons. Staple diet of salads for the forseeable. It's helping that he's able to get out, over last weekend he didn't get out between Friday and Tuesday and he hardly ate, but by going out every morning he is eating whatever I put on his plate for dinner.

Did some reading up last night on the effect that the heat has on somone with ms and have realised that his increased incidences of vertigo may also be down to the fatigue. There are quite a few things available, all with a price attached, that can help keep cool, but the cold 'splash' jsut before bed seems to be helping and also now possibly the sessions that he has in the pool have the double benefit? of getting the important exercise AND getting his core temperature down

The lift was working at the gym again so grumpy went and has some hydrotherapy - just really walking up and down their pool. It's about 20 metres long and because the water comes up to his chest he's supported and doesn't need to use any conventional walking aids - occasionally the normal 'floats'. It's also a nice cool atmosphere for him at the moment. When he's had this type of therapy in the past, it was once a fortnight, but his current trainer is happy to try every session (twice a week?) if he can manage it. As long as there aren't too many other people in the pool I get a good' splash about' as well.

He did the best bit of 45 minutes this morning that I thought may have been too much, but we'll see what he's like between now and the weekend? The Fatigue can take up to 24hrs to kick in and sometimes it can be vicious!!!

We've got our rearranged shopping trip tomorrow which could be interesting?

Good start to the day. We had a business meeting to attend at 10am to get some accounts 'examined', managed without the wheelchair one way, but needed it to get back to the car, then the energy failed on the last leg of coming back up the stairs and I had to get the ramp and chair out onto the hallway to get him from the top of the stairs into the flat.

Still better than this time last year !!

Tuesday is normally one of grumpy's days to visit the gym for sessions with a personal trainer, how as all their facilities are on the first floor and the lift broke last thursday we couldn't go. However I didn't want to waste time when he has some strength so we stuck to our normal (well almost) time and did some errands such as taking some bottles to the bottle banks and paying some cheques into the bank. Was pleasantly surprised with the nice breeze which kept the temperature quite nice in the shade, had a walk (me walking him driving his PowerTrike) down to the riverside park, but there were no seats in the shade that were unoccupied so we came home. He'd had about 45 minutes of 'fresh' air so that wasn't bad for someone who hadn't been out since Friday. He also managed to get back up the stairs quite quickly (for him anyway) which was a good sign.

We've decided that for the duration of this 'heatwave' we will only go out between 10 am and 12pm by which time his energy levels have started to drop significantly

Monday is our day when we have a Crossroads care attendant come in for an hour. At the moment this just gives me a bit of free time to sort out our garage that has been the home for a load of gubbins since I sold my house 2 years ago and had to de clutter this flat to make room for it all. Not an ideal place, so when we finally had to accept that we would have to move from here, it meant MORE de cluttering. This time we've rented a storage unit and I've been de cluttering the garage as well as this flat for the last 3 months

Grumpy also has a flat in London that we've got to sell but it's been a bit slow getting it ready. The decorator has done his bit, but now it's my turn to clear up and declutter up there too, but as this involves a train journey there and back, I only get about an hour or two to do stuff then I have to come back I really need to spend a couple of days there but can't take Grumpy up there as it's on two levels, also as it's only small he'd be under my feet all the time so I'd be worse off. So need to find somewhere I can dump him while I work, I've asked him to ask his sister as she sometimes works from home, but I'm not holding my breath!!!

He's been really weak again today, he was ok for a couple of hours after he got up, but by 2pm all his energy was gone so I had to do the shopping on my own, may go back to using our on line account and have it delivered from sainsburys.

Next hurdle is to see if I can get him to eat.

Our care attendant made him some lunch which is an improvement, and I've bought some yoghurts/deserts that I'm hoping he will eat, may be I should also try to get some more fruit?

Awake early as usual although I nearly had a fit when I looked at the clock on my side of the bed which showed 10.50. Then looked over to the radio alarm and found it was only 6.40ish. When the batteries on my clock run down, the hands stick.

There's not usually much I can do till my gom gets up and due to his fatigue he usually sleeps for about 10-11 hours.

Most days I get up between 8 and 8.30 and make us some cold drinks to take back to bed. I also start the coffee brewing.

I may try to get showered if I'm up early enough, but mainly I have my shower after my gom's got up 'cause he wouldn't be able to answer the phone while he's still in bed but once he's up he's usually in a room with a phone extension.

With the hot summer days finally arrived he's becoming a real worry. It makes him physically weaker and this impacts on his psychological state. He has quite a few jobs to do for the voluntary organisations that we work with BUT he can't motivate himself enough to do them and I end up having to 'encourage' him which stresses us both out.

Last year at this time we managed to get away on a cruise, but we won't have that relief this year.

My hayfever's really bad this year. I've had it all my life so I don't know what it's like to go through summer without itchy eyes, but the last couple of years I've not been able to get any relief (except when we went on the cruise)

Our usual weekly routine would be to shop Mondays, Wednesdays and Fridays, then my gom sees a personal trainer at a gym on Tuesdays and Thursdays.. Regular exercise normally helps to maintain what little mobility he has left, but, because it's not available on the nhs we have to pay for private sessions. We also have someone come to the flat for an hour on saturdays.

My Gom doesn't like going out on Saturdays because he doesn't like the crowds, I just pop out to get the weekend papers and browse some of the shops. Then sundays we both go out to get the papers and weather permiting we go for a ride to the local park or somewhere for morning coffee. David has a motorised attachment for his wheelchiar and I have a bicycle.

Today however, it was TOO HOT, so I just walked into town to get the papers. I just have to make sure my gom eats and drinks enough!