17th- 23rd June - beginning of changes

Friday 17th

Passed much the same of thing as before – got up, washed and downstairs. Legs a bit better,

Did the physio exercises when my lunchtime carer came. Didn’t bother going upstairs to loo, but I think that in future I will do as a matter of routine – walking from the stair lift to the loo is good.

Went to the doctor’s. Unfortunately, Julio wasn’t back from his meeting, so had to get Sian to take me at the last minute. Having a blue badge has its advantages – it was the only space available in the car park. Our surgery has a really bad parking problem.

Dr had a look at my blood results. Still anaemic, but now borderline. Potassium also low but improving. Urine test showed an infection, but I mentioned that I was already on antibiotics, so that was ok. I have a skin tag that over the last few months has been a problem – sometimes bleeding, sometimes weeping, but it is ok at the moment. Both carers and the nurse have suggested that I get it removed, and the dr (who does the minor surgery) agrees. I have an appointment for July and advice to put a dressing on it if it needs it. I need another blood test in a fortnight. I tried again to get a print out of my blood test results, and although the receptionist said that was fine, she called over the it bloke to see how to do it. They handed me a couple of sheets of paper, but when we got home and looked at it, it was only the last month, and not the latest ones. Oh well.

Back to the house, where Julio had arrived back with his meeting guest, who is a good friend, so Sian wheeled me to them (very bumpy over drive!) to say hello/ goodbye to him. He has also been really ill and been in hospital while they tried to find out what was wrong. He also has problems walking, but now has a stick. It was nice to see him.

Inside, tired, so sat with feet up.

Saturday 18th

Julio had a bit of a lie in, but not as long as I would have liked him to have had. We got up, and went shopping to get the bread for breakfast. Then to butcher’s to get the BBQ and bacon. Bacon butty for breakfast!

Julio cut the grass, the day passed without much excitement.

Sunday 19th

A longer lie in (after Julio went downstairs to let the dogs out, which had always been one of my jobs). Watched  Marr. Got up while watching Peston, washed hair with help from Julio and sitting on the shower stool, and was downstairs ready for Sunday Politics and brunch. . Sian was looking after Blossom, the 3 year old daughter of friends, so we had her with us. It took her a while to stop looking at me in the wheelchair, which she obviously thought was an odd situation. I am doing my bit for disabled awareness!

We had a lovely Father’s Day BBQ, with Julio, Sian, Blossom, David and Maria, Blossom ate lots of sausages! David, who has Alzheimer’s, was having a good day. Once again, I felt useless as I couldn’t help much with the preparation or clearing up, making everyone do more work.

Not much of the physio exercises this weekend, but I have been doing more walking and still do my sitting down ones.

Spent the evening watching tv. Have been watching a lot if referendum coverage over the last week, and no doubt will be watching a lot more over the next week!

Usual bed-time routine.

Monday 20th

Expecting the nurse today. Had a nice chat with my carer as we were getting up –you can see that  it is really important, and I feel really sorry (and a bit cross) for those who have different carers for intimate care. Downstairs, had breakfast and waited.

Carer arrived, and we went upstairs to loo (nothing but had been earlier) and then physio exercises. Carer very helpful and clearly experienced and knew to put foot on walking frame, and made encouraging remarks. She also made me a cup of tea, and then went. We are allotted a half hour for this visit, but she always asks if there is anything else I want her to do. I am usually her last or last-but-one call.

The district nurse arrived, and redid my leg blister dressing. I have honey on it and a bandage from toe to knee again. She replaced the heel blister dressing and said someone else was bringing the boots. She went off, and I will have another visit on Thursday again.

The boots arrived. As Sian said when she saw them, they look like packaging we throw away in the office. They came in a cardboard tube that was also a pump (like a balloon pump but bigger). The nurse pumped them up, showed me how to pump them up in case they get a bit deflated, and put them on me. I must admit they make a big difference – I don’t have to have my feet dangling over the edge of the stool. I can wear them in bed.

That was the excitement over for the day, so back to sitting, doing some more exercises by myself, a bit of tidying, making myself a sandwich for lunch (and falling asleep while watching tv).

I sent an email to the NMO team asking about medication, pain relief and physio. I attached the blood test results and my physio exercise sheets.

Sian was going to the chemist, and as I hadn’t done a poo for a few days, I asked her to get me some sennakot as the Senna had disappeared from my repeat prescription list.

Had dinner, watched tv with Julio and then bedtime (a bit earlier than usual as needed to go to the loo and it seemed silly to go back downstairs). Julio went down and finished tidying, putting dogs away in kitchen, and then came up.

It was odd having the moon boot on, but it did help and was better than the pillow under my calves, although it was sticky and a bit noisy when I moved!

Tuesday 21st

Not a bad night. The boot helped, but my foot stuck to it sometimes, and I was worried I was going to burst it.

Carer arrived, and suggested that I put it in a pillow case. Why didn’t I think of that? All the benefits, but no sticking and less noise. Downstairs. I’d had replies from my NMO email – Dr Leite has said that the  Gabapentin (neuro pain relief) can be increased to double the dose over the next 3 weeks, and the steroids can be reduced on 1^st July.  Nina, the NMO physio, has said the exercises are all appropriate, I need to concentrate on the core, and my physio here can contact her for advice if necessary or if she wants to.

Then I had a phone call from the Community Team saying that I needed to be assessed as I have come to the end of my 6 weeks maximum NHS discharge care. I will be assessed by the Adult Care Services of Wiltshire social services. Community Team rang - can they come this afternoon? Yes, that’s fine. Then 10 minutes later I get another call saying that the physio will be coming and she can do the Community Team’s assessment that also needs to be done.

So, carer, loo, Exercises, lunch.

The physio arrived at 3.30. We did some exercises, she gave me some advice, told me we were concentrating on building up the strength as without the strength, the balance isn’t going to come. She gave me more exercises, some of which I won’t be able to do yet, but should be able to by the time she comes again in a fortnight.

We then did the assessment of what I can do, what I still need help with, and what equipment I need. My carer had also talked about this as I’d told her about the assessment, who told me that I needed to think what equipment would be helpful, and to make sure that I tell social services (for example a tray for the walking frame). We have already saved someone a fair amount of money as we put in the stair lift and provide my trainer pants. We also agreed to only 2 carer visits. I have. A feeling this is going to end badly. We don’t have the disposable income to pay for carers.

Watched the Euro debate, and went to bed.