Am still quite manic due to the steroids but due to decrease to 4mg tomorrow so hopefully will be more with it. I find I'm not getting to sleep till about midnight and don't want a sleep in the afternoon which is lovely but feel I'm wasting this energy as unable to settle to anything.
Monday - went shopping with my sister-in-law and even though we stopped for coffee and lunch and was probably out for about 4 hours, my feet definately knew about this. However, the Vit B and alpha-linoeic acid are definately helping and I feel less spaced out today. Hubby was off today so he looked after them.
Tuesday - work in the morning and off to look at disability scooters in the afternoon. The thing is I think they are designed for short fat people and definately not for someone who is 1.73m and has exceptionally long legs. I want one that is fairly portable as well and that can stay in the car. It is hard to find a good range. The shop prices varies as you would expect and the ones I'm looking at are around £700 - much more than I thought as I thought I would be able to get a second hand one. The internet is much cheaper but then it is a case of finding the model I want and tracking it down on the internet as they retail there for about £500.
Hubby got very depressed when we were discussing this as it is the reality that he can not get away from.
Apparently, the disabled parking bay line team came round today but our car was there so they couldn't do it. I phoned the council and spoke to a lovely man but what an amazingly inefficeint system.
- You can not book a slot or even a day.
- They will make about 4 attempts before leaving a note and asking you to contact them
- You contact them and then they deliver cones so that you can put them outside your house
- They come back and do the lines
When I suggested that I leave my mobile phone number it was if nobody had told this man what mobiles were - he sounded so bemused. He couldn't understand why i thought an appointment would be a good thing - is this just me or does it seem ludicrous to you that there is a line painting team roaming the streets incase there happens to be an area in the city they can paint!! Eventually, he suggested I talk to someone else in the morning which I did. He was just as vague but when I said where I live it is obvoulsy near the paintlining depot as he said they could swing round first thing in the morning and do it then but he would deliver cones by lunchtime and he would do the lines on thursday. Well, that afternoon, they just appeared and did the lines so in the end it was very simple but what a waste of our council money!!!
I spent the afternoon, food shopping and getting some pencils etc for AJ's new excursion into the Junior school.
In the evening, I went down to my friend's house for her to do the ironing which was silly as she has just had an operation on her hand but she did siupply me with a lovely meal of minestrone soup as hubby had cooked a very pathetic meal of a piece of fish about the size of a fish finger and about 10 chips!!! Not the thing to do when on steroids!! Anyway, the minestrone soup was very filling and also low calorie - can't say the same about the wine though -shame!!
Today - thursday - Laura and AJ were with friends so had Woody at home who was very helpful. I resewed all his Beaver badges onto his cub blanket for camp on sunday. That seemed to take me all day - it's cos I've lost the feeling in my fingers it makes it difficult. I also managed to order a mattress for Woody and order tickets for the Simpsons film tomorrow and contact Sail4cancer about the Bank Holiday Day out.
The hospice nurse came round and she suggested I increase the steroids to 6mg as the 4mg is not enough to fully help my wheeze as it has returned slightly. Difficult to know if it is the weather but I think I do need the 6mg to control it better. She suggested I take it all in one dose cos then hopefully, I won't be up half the night (2am last night!!). Not sure if the GP will agree or if I will have to phone the hospital for permission!!! Am also going to ask about a private appointment with this consultant who appears to interpret the criteria more widely than other trials centres. Expect he won't make a decision about this either and will want the onc to do it.
Tonight, I've been to the cub's info night about the Centenary camp - it is apparently under about 3 foot of mud at present and they have had to change the camping arrangements. There will be about 3000 cubs, scouts etc there!!! Can't imagine the chaos on arrivals and departure day. They do have 2 days out so that will help -at least they can dry out on the coach then!!
Looks like it will be a girl's lunch out on sunday rather than the family bbq , my breast cancer group were planning as the hostess has been flooded and the weather does not look good. Oh well, will hope one day it dries out and we can have a normal summer day out.
Have booked to go to a Travel Lodge in Eastbourne so I can take the kids to Drussilla's Zoo again. Thought it would be too much to drive down there, do the visit and then drive back and the kids love staying in a hotel. Think it will be a shock after the 5* luxury of Greece though. Was hoping to get the scooter by then but don't think that will happen especially as the postal strikes will delay my applications for grants for my scooter.
Will try to go to bed early but just not tired and don't have the bretahing capacity to do anything useful and too restless to do anything like my cross stitch or photos!!
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