22nd -26th June.

Wednesday 22nd

Nothing much today. Usual spasms and pins and needles, and I have done my physio – morning carer does the lying down exercises with me before I get up, lunchtime carer does my standing up and sitting down ones with me – she is very helpful, watching what I am doing and prompting what comes next. Refilled my tablet case for the next week, and ordered repeat prescription for the stuff I was short of (not Gabapentin or Mycophenolate as I have plenty of those at the moment. Realised that the needles for my injections had disappeared from the online repeat list, so rang surgery who will put it back on. Luckily, I have some slightly different ones left over from my last lot of injections, so they will do until I get the proper  ones.

Thursday 23rd

Didn’t have a good night – several spasms and my middle was very tight. Went to loo with Julio and then carer arrived and up we got. Made myself breakfast (minus tea which I can’t transport and I’m still wary of the kettle). District nurse arrived about 12, and said that she had come to do the catheter as well as the dressings. Decided we needed to go upstairs and do it on the bed, so up we went.

Catheter is a new silicone one. She explained that she had ordered a long tube as I was in a wheelchair and it was more practical. Instead of a strap holding the catheter tube in place on my thigh, I have a sticky patch with the clip. There was some difficulty getting the catheter tubes into the clip (I am sure I heard her say that it must be the wrong patch at one point), but we eventually got it in and clipped.

The dressings were changed. Not much improvement in either of them, so more honey applied to the leg blister (when does a blister become an ulcer?) and I am again bandaged from toe to knee. The heel blister is less of an issue – I was told that it would either burst or reabsorb, and it was just a matter of time.

What was more concerning is that the district nurse told me that as I was able to get out in the car, I wouldn’t be entitled to home visits for the “wound” dressing, and that I would have to go to the surgery. I pointed out that this would mean someone having to take time off work to take me, but theoretically, I can ask for transport. It’s daft – the nurse has a long term patient to visit half a mile away and goes past the gate. But those are the rules, so Julio or Sian now have to take me – I’ve been in the surgery when a patient was turned away as they were late for the appointment as transport had turned up late.

However, I am doing what I am told, and have made 2 appointments for the week after next (nurse still coming next week).

Lunchtime carer arrived when we were in middle of catheter replacement; she offered to stay until we finished, but it’s only a half hour visit and it was going to be another twenty minutes or so, so she made me my usual cup of tea, and left.

Felt a bit uncomfy with new fittings, so sat for a bit with my feet up in my air boots, and had a little nap. Took painkillers. Woke up, and did physio. Tidied up a bit (this time just rearranging stuff on my tables and getting rid of rubbish).  I think I mentioned that I have ordered a tray for my walking frame to carry stuff, but it hasn’t arrived yet, and I don't always feel confident in walking far on my own with no-one here (although I do have my phone with me all the time). I have a wheelchair alternative – a cotton bag (compliments of the Turin Tourist Office) that has long enough handles for me to hang it round my neck that I can put things into transport.

Decided I don’t like the new catheter arrangement. The long tube means that the leg bag is on my shin, but the drain valve is level with my ankle – not very discrete and I only have some clothes that are that long.

Off to the polling station – I enabled the returning officer to be politically correct as I used the special new disabled voting booth with the lowered shelf and he lifted the ballot box down to my level so that I could put my voting paper in!

Bumped into friend who had previously texted me to ask if she could come and visit (lives in the village but has been working away – she works with disadvantaged children and community groups to produce community art – brilliant) so we had a quick chat, and she’ll be coming next week for a proper catch up – I’m looking forward to it as find afternoons a bit lonely.

Dinner, then bed to spend the hours I’ve been awake over the last few nights to good use dozing and watching the results programme.

Friday 24th

Can’t believe the result. Had long discussion with morning carer about what we knew so far. She will not be coming next week as she is office based (changing roles and doing more reviews and assessments, which she’s not sure about as she likes the hands on work). Talked about who will be coming instead (not sure yet, except lunchtime carer will be morning carer sometimes), but I should be getting the same one most times, according to good practice. However, she will be coming on Wednesday afternoon to do my care plan. Not sure how this fits in with the one the social services will be doing, but I assume it feeds into it. We’ll see.

Had a late breakfast/brunch  with Julio (does what it’s called depend on what you have or want time it is? If content, it was breakfast. If time, it was brunch), watching the news.

Lunchtime carer came, and we went to loo, did physio and she made a cup of tea. I can really appreciate how carers are a vital part of people’s lives – we chat and she really knows what I need.

Spent the afternoon glued to the news on tv, until Julio came to collect me as some more old friends we hadn’t seen for years. I think they were shocked at how I looked, but we had a lovely time.

Julio and Sian  had a difficult week, we were all exhausted, so we had a Chinese takeaway. Probably (definitely) not good for the blood sugars, but so what!

Off to bed eventually, and fell asleep listening to news.

Saturday 25th

I get up much earlier than during the week on a Saturday as we need to go to our local farm shop for the bread (wonderful stuff). Also called Iinto butcher and chemist for prescription. During all these, I just stay sitting in the car while Julio does shopping as it’s not worth the effort of getting the chair out and me into it. Usually the farm shop people come out for a chat, and the butcher waves at me (but it depends where we can park!).

Home for brunch – bacon butty, then a bowl of muesli, yoghurt and fruit.

We watched more news (this is compulsive stuff) and Julio had to abandon plan of cutting grass as it started to rain. Did my physio and was walking much better – I managed to go upstairs on my own to the loo. This is a big step forward and something I have done a few times now.

Had an indoor BBQ (ie on the grill) and went to bed, still watching the news and amazed at Benn’s sacking just after midnight.

Sunday 26^th

We have a leisurely Sunday; I have been taking my first dose of gabapentin and paracetamol (latter if needed) at about 8am before we get up. Juli goes and lets the dogs out at some point while we stay in bed and have a lie in. We have a political commentary morning – starting with Andrew Marr which we watch in bed. Got up, and went to bathroom and washed, cleaned teeth and washed hair, all with Juli’s help.

Came downstairs during the first part of Sunday Politics. Breakfast. Put washing in washing machine. We had decided that it is becoming more important to have a break. Need to start making lists of things to take. Kept watching news and Shadow Cabinet getting smaller by the half hour. Discussed the Maze – we (as in Julio)   have to do the design for the maze so that Sian can work out routes. Something else he needs to do and adding to stress., Then we need to cut it. Ground too wet to get mower on today, and maize getting taller, so need to cut before we go. Hope for a good evening this week.

Did some physio. I am also doing more like tidying up in kitchen and living room, but if I do major movement (eg lean over side of chair to put washing in machine) I go into spasm. Middle gets very very tight, and difficult to breathe properly. The kitchen floor is filthy and I need to work on a way of cleaning it. Obviously not going to get down on hands and knees with scrubbing brush, which is the way I used to do it pre NMO. I wonder if I could manage the steam mop?

Julio went to do some grass cutting. Sian moved the pony, and I am still watching the news.

Went for short ride in car while we bought fuel for the lawnmower then milk. I didn’t need the chair upstairs when I went to the loo, and I walked out to the car and back again. I have done my physio exercise and now need to put my feet up.  

I got Sian to show me (again) how to post these blogs, but haven't worked out how to put the accent on her name yet, which i cab do in word on my pc, but can't do it on my ipad or on the blog (yet). edited the typos. Dinner ready (the remainder of the bbq that Sian cooked on the grill in doors, and we ate it watching Top Gear, then I loaded the dishwasher and cleaned the breakfast bar.  Went to collect the clean washing to fold and take upstairs, but because it has been a wet day, and because the aga isn't working, non of it was dry, apart from a pair of the red socks and the flannels that I had put on the  covers. I shall have to wear the same dress I've had on today - one more day won't hurt. I need to sort out clothes for going away.