22nd - 26th June - Changes on the horizon

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.  

Sian cooked dinner – the rest of the BBQ – indoors and we ate it watching Top Gear. Afterwards, I managed to load everything in the dishwasher , including the stuff at the back. Cleaned the breakfast bar. Went to get the dry washing to fold to take upstairs to put away, but because it’s been wet over the last few days and because the Aga isn’t working properly and pumping out heat, it wasn’t dry except for a pair of red socks and the flannels that I had put on the covers. I’ll have to wear today’s dress again as I don’t think I have any long things (that’ll hide the leg bag and valve) readily available and by the time we go to bed it’s too late to fuss around with finding things to wear and put out for the morning. I need to find some suitable stuff for when we go away. 

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.

  

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.

13th June - Catch up - a long time!

NMO Patient Information Weekend at Aston.

I’d been looking forward to this immensely, but with a bit of trepidation. I’d not been away before and wondered if we would cope. There is a lot of kit that needs to be taken with us – it’s no longer a question of just bunging a change of clothes in an overnight bag.

The first session was at 4.30, so we worked out that if we left at 12, that would give us plenty of time to get to Aston, check in to the Campanile just around the corner, go to the loo,  and arrive in time. That was without the M5.. We left on time, but didn’t arrive until 5. The M5 was at a standstill or crawling  for nearly the whole length..

We joined in the “getting to know you” session, which was all about patients exchanging experiences. Then there was a gap (loo break!) before a buffet supper. We joined up with a lovely couple – she had first symptoms whilst living in in South Africa, but now was able to travel and was mobile.  Got back to the hotel (disabled bathroom meant grab rail around loo but no shower, and the soap dispenser was too high to reach). i left my first feedback on disabled facilities.

In amongst the stuff that had come from the continence suppliers, we had a fold up stand for the night bag – very useful! I’d had a touch of diarrhea in the days before, and had an accident in the morning, but we managed . Very attentive French hotel manager talked to us at breakfast (very nice croissants!) then off to the Conference Centre again. People still at breakfast, so we availed ourselves of the wide range of free hot drinks and looked at the leaflets.

Very interesting day, with huge amounts of information, including the latest research news. Medical research is a whole new world! I was particularly struck by how friendly and at ease with each other the team were, especially as they were based in 2 different places. A lot of the technical stuff was beyond me, but hopefully I will have caught up a bit by next year. It was also good that we patients were treated as intelligent adults, which doesn’t always  happen in medical circles!

Home again

Came back home tired but buzzing, with lots of information, leaflets and a realisation of how lucky I was in being where I was, being transferred to Oxford, and the early diagnosis. Unpacked, had supper and went to bed.

Next day I felt awful, and spent the day asleep in bed. Didn’t eat or drink much. Monday felt a bit better, but the diarrhoea had come back. Again, didn’t eat or drink much. This went on all week.

Very Unwell

We has planned a BBQ for bank holiday weekend, but I put paid to all that by being very unwell on Saturday. I was downstairs but needed to go to the loo. Got as far as the stair lift and then (apparently- I knew nothing about what happened from then and relied on others to tell me) refused to get out of the wheelchair. Eventually got to sit on stair lift, where I lost control and slid off. Incoherent. Ambulance called. At one point there were 3 ambulances here. The paramedics (who Julio said were wonderful) got me off the floor and back into wheelchair using and inflatable cushion.

They were here 3 hours, checking my blood sugars (having a hypo), giving me glucose, and I think I had a drip. Eventually they decided I had to go to a&e and was stable enough to go. Off I went in the wheelchair in the ambulance. I vaguely remember drips being put in and Julio and Sian eventually going home at 1.30am while I was waiting to go to a ward. Had a room of my own because of the diarrhoea (sign on door warning people). And had drips. Iv fluids (total of 10 litres over a few days); Iv antibiotics and Iv steroids. No sleep as they kept checking my blood sugars and pressure every hour, and as I had drips in both arms, every time I moved, the alarm went off.

Gradually got better, and was moved to different wards. By Wednesday, I was ready to go home. Physio came and got me out of bed, and I walked to the loo, so after lots of questions about the situation at home, she said she was happy for me to go. On Thursday, I had a talk with the doctor and said I wanted to go home. She wanted to keep me in an extra night so that they could monitor the change from Iv to tablets for everything. In the end she said I was ok to go as long as I promised to go back to a&e if I felt ill. As they were getting me ready for discharge, I had my catheter changed and they discovered a blister on my leg, so dressed it.

Home again

Great to be home. Took it easy for a while, and got back to normal. Lots of visits to the surgery for blood tests, see GP for reviews etc. The district nurse comes regularly to check and redress the blister, and various other bits of me, and last Friday the carer found another nasty pressure blister on my right heel, so that gets dressed as well now. It is very difficult to manage this as I have oedema so my feet and legs are very swollen. This means I should have my feet up, but that puts more pressure on my heels, so we are using the footstool so that my feet dangle over the edge. At night there is a problem as I can’t move easily, so my feet tend to stay in the same position all night. I have a pillow under my calves, but it doesn’t help much. It also means that during the day, because I can’t put my own feet up or down from the stool, someone puts them up and then I get left until they come back and put them down again. Hopefully, the blister will heal soon, so we don’t have all this hassle.

On Wednesday Sandra and Debbie called in on their way to Heathrow where Sandra was flying back to Brazil. Only a short visit home, as she’ll be back in August/September. Then on Thursday had  a visit from Sue, an old friend from NCMA days (over 25 years ago) who was also responsible for me becoming a magistrate. She and Rod, her husband, moved to Cambridgeshire around 15 years ago, and they called in on their mini grand tour on the way to Cornwall. We talked bench, hospitals and illnesses. She also has a comparatively rare illness and is taking steroids. She brought me two presents – a signed copy of a well researched Victorian detective story by a friend of hers on the Cambridge bench. The other present was a lovely bunch of flowers, which I really appreciated as all my others had gone.

Physio has started again, and my lunch time carer helps me with the exercises. Can do some of them reasonably easily, but others are more difficult, and some are impossible at the moment.

Had a relaxing weekend – on Saturday we went shopping (Waitrose in Malmesbury) but we still haven’t sorted out getting a trolley that fits on to the wheelchair, so we just have a basket that I balance on my legs. This is ok, but we can’t get much, and towards the end the basket gets very heavy, which although I can’t feel much in my thighs, I do get to the point where I do feel the weight and it gets uncomfortable. Julio also pushes me past what we are looking for/at, so I can’t see it, which is very frustrating.

We were going to use our My Waitrose cards for a free cup,of coffee, but Juli said that we could go somewhere else for a cup of tea. That was the start of quite a long drive to the Sharpness Canal and the Stable Café where we had a cup of tea and a giant teacake. I had a lovely time, and realised that we’d managed quite a long trip out without the changing bag (or the radar key to get into public disabled loos). Conveniently, I am getting the bowels under control again, and the routine is to go in the morning (Julio has to wake up quickly sometimes when I say I have to go as it takes a while getting me out of bed and into the bathroom).

Yesterday we did it again (without the shopping). Off we went for a drive through the wonderful Wiltshire countryside to Devizes and the Caen flight of locks. I was a bit frightened when Julio was wheeling me over the bridge over the lock as there was a drop into the canal at the end, but we got across with no mishaps and got a table at the Lock Cottage Café (last there some time ago with Beau) where we had a cream tea – proper Rodda’s clotted cream and Tiptree jam. Watched boats coming up through the flight, which takes an awful lot of energy and time as it’s the longest flight in the country. Then after a chat with the Canal Trust volunteer, we decided to try to find another canal side garden/tea rooms. So off we set, with no map,or sat nav, just our sense of direction. Worked reasonably well, but we arrived at about 5pm so thought they’d be shut. Self navigated our way home.

So how am I feeling? Frustrated that I can’t do what I want and that I am still so reliant on everyone else. Firstly, and mostly, on Julio who has the burden of dealing with me physically most of the time. Seeing him putting me to bed where he heaves my legs up and then pulls me upright and then pushing me by my legs so that I am sitting up and can read or watch tv until it’s sleep time. Then he has to help me lie down. In the morning, there is often an urgent call to the loo, then again getting me back into bed and sitting up to wait for the carer.  During the day, he comes in and checks I’m ok after I’ve been got up and makes my tea for breakfast (I can do the rest if he gets the bowl, plate and cereals out). Then another check at about 2pm.

I am not doing as much physio as I should, but some of them I can’t do as they involve lying down and using my feet to push up. Not going to happen for a while. I have been standing up and wiggling quite a bit, and am going into the kitchen in the wheelchair a fair bit for meal preparation and washing etc (although can’t hang the washing up).

We are in a different phase now that I have been home for a while and things seem to be stabilising, so I think this is probably the last email update I do for a while now – I will keep doing the blog as that is more of an NMO purpose to help with the research project and the psychological effects as well as the medical situation re medication, symptoms etc. Other updates will be via my Facebook postings for those of you who have Facebook, and phone calls to Mum and Dad. I think that covers everyone that was getting the email updates – let me know if you’d like me to contact you in a different way.

Thanks for listening to the updates up until now, and thanks for all your good wishes, prayers and encouragement – it really has made a huge difference.

1st May - Home - Getting used to things

I had remembered to take a glass of water to bed last night, so didn’t wake up with such a dry throat. Dozed for quite a long time. The night bag had fallen off it’s coat hangar holder, but all was ok. Watched a bit of Marr while still in bed, then got up, went to bathroom and got dressed. Came downstairs and Julio sorted out breakfast which we ate while watching Big Question then Sunday Politics. Had my meds and insulin.

After breakfast, we went upstairs for me to have another go at the loo, then came down again. Sent a Facebook happy birthday to Karen. Cheating’ I know. Then we watched the Grand Prix with a cup of tea and Julio finished mending the washing machine. At the end of the Grand Prix, we decided we’d go out for a drive and would try getting into the Jeep, as it’s bigger than the mini (obviously!).

I didn’t like getting in – it involved using a pallet as a step, and I was worried the walking frame legs would fall down the gaps. However, managed to get in ok. We went for a drive around the field to have a look at the state it was in (ready to plough) and the solar farm which now has a light on all the time that nobody mentioned before. Everyone is really cross about it and saying that something must be done. We then went to wash the jeep, see the result of the demolition of one of the Bassett railway bridges, and get more vegetables.

Got back, getting out of the jeep was easier than getting in, and I sat down to watch yet more tv and Juli went outside to do some stuff. Sian arrived home after going out with her friend Becky, and then went for a snooze as she is still not very well.

More meat in Aga!

Sian came back after her doze, and took me to the loo, and then started getting the rest of dinner ready. Juli arrived in after doing some work in the paddock getting it ready for the pony, which involved putting up/reinforcing a number of fences as Carter is a Miniature Shetland and is by all accounts an escape artist! 

So, that’s about it for now nothing happening from a community team point of view. On Tuesday I have the kidney scan, and on Wednesday the GP visit. I need to call the community team on Tuesday afternoon if I haven’t  heard anything. I won’t be doing updates so often now, if that’s ok with everyone. I am trying to come to terms with what my body can and cannot do at the moment, and what I need to concentrate on. The main problem is that I still don’t know what my legs are doing and that I have permanent pins and needles. The other issue is the tightness in my chest that sometimes spasms. I am also very tired, so I think it’s a conserving and building strength now.

Goodnight!

30th April – Home! - My first full day back at home.

Thursday night was uneventful – the night staff were pleased that I was going home in the morning, but I still wasn’t going to be sure that I was until I was in the car!

In the morning, it was confirmed. I had breakfast, three half pieces of toast and both jam and marmalade!

Dr came in to say that the urine sample that had been requested would be better done by me and taken to the GP. Got up and dressed, and was then asked to vacate my room so that they could deep clean it. I managed to pack everything myself in my case, and I was given a pack of trainer pants and some more continence stuff. The domestic lady that came to see if I needed help said I should take the cream and spray as it would only be thrown away, so I stuffed those into the case as well.

I wheeled myself into the day room, and had a long chat with the Irish volunteer lady who gave me two cups of coffee and two biscuits! I had the whole of the day room to myself, and then lunch arrived. Cottage pie, mash and mixed veg, then my last hospital cheeses and biscuits.

Sat playing games and completed three “customer” questionnaires – one from the ward, asking about the usual things, including cleaning (excellent), food (good but monotonous and no nutritional information), dignity and respect. Next one was about quantity and quality of therapies offered. As I’d only used the physio and occ therapists, I left speech and language, psychological and psychiatric. The third one was from the Trust (on an A5 card with one of those scan logos as opposed to photocopied sheets).

I handed the remote control ceremoniously to Ellen and made her The Keeper of The Remote! She graciously accepted.

Then Juli arrived and we sat while we went through the discharge letter and the huge numbers of drugs. I realised that I am going to have to be really organised about this now that I don’t have a nurse wearing the “Nurse on drug round – do not disturb” tabard. I think I might buy one of those pill organisers and do several days at a time.

Got all the stuff into the car, and made our way home. We stopped at the petrol station to get fuel and I asked for a bar of Fry’s Turkish Delight as an escape reward. They are much smaller than they used to be! Came back via Lyneham, where Juli nipped into the Co-Op to do some shopping. Saw a friend of ours, John Holland, as we were coming over Braydon Crossroads, and there was much smiling, waving and thumbs-upping.

Got home and unloaded car, including me. Went up to loo, then back downstairs and ensconced in living room. Theet and Bap came round to say welcome home, and give me a lovely bunch of roses and tulips that Bap had chosen. Sian gave me a lovely bunch of helium balloons!

Watched tv and Juli cooked me a brilliant meal of steak, chips, stuffed mushroom and sweet corn. Plus a wonderful French stick with Lurpack. And a jelly for dessert. I was very happy!

Watched more tv while Juli slept on sofa, then up to bed. Realised that we didn’t have a stand for the night bag, which is important so that it doesn’t pull on the catheter. Juli cobbled together a stand to hang from the bed frame from a wire coat hangar. Got into bed quite easily and did some game playing, then lay down properly and fell asleep while Juli was in the bath.

Had a wonderful night’s sleep, and only woke once but we’d forgotten to take a glass of water.

Saturday 30th April
Woke up and just lay in bed, happy to be home. The night bag had worked well. Juli woke up and got up and went to bathroom, and I waited until he came back. Got up with no bother, and into bathroom for the loo and a wash. Got dressed. Came downstairs and we went to get the bread. A bit worried about changing the routine re timing for the meds, but decided it wouldn’t make that much difference.

Into the mini and off to Purton House for the bread, and One Stop for milk, bran flakes and sliced brown bread for my toast. Back to the house and into the living room, where I sat with one of our little side tables. I had my bran flakes and toast, while Juli had bacon butty and toast. I think I will need to buy one of those adjustable tables.

After breakfast I was feeling tired, so I moved onto the sofa, put my feet up and dozed. Juli and Sian were doing stuff outside, but they popped in every now and then, and I had my phone, so all was fine. Afterwards Sian told me that they had checked on me a number of times, by peering through the living room window! Then I had a visitor – Sue from next door, who brought me a card and a lovely bunch of flowers. This is good!

Checked the post to see if my blue badge had arrived, but it hasn’t. Never mind. However, there was a lovely card and letter from Val, saying that Matthew was getting married this weekend. How did I miss this? I must get a card. Speaking of cards, I realised that I hadn’t posted Karen’s birthday card. Real family failures here. I must do better.

Went for another drive to get some compost.

We were going to have a bbq, but the weather was a bit iffy, so the Asado was put in the Aga.

****very too much information warning*****
Then I needed the loo. Fairly urgently. Unfortunately, didn’t manage to get upstairs in time. When I got there, it was a disaster. I blame the change in diet! Sian had to call Julio for help cleaning me up, which was difficult. It ended up with me trying to get into the shower. We had had the new shower stool delivered, but I wasn’t supposed to use it until it and me had been evaluated by the occupational therapist, but we didn’t have time for that!

At one point I, my legs gave up and I ended up, on the floor. It took a lot of effort on everyone’s behalf, and the shower stool. Eventually, I got up, cleaned up, and redressed. It was a frightening experience, and I think we’ve all learned from it.

****ok again***
Back downstairs, and I was exhausted, so just sat  a while Juli and Sian finished getting dinner – Asado, mushrooms, baby potatoes, and salad. Sian went off to bed, and Juli and I watched tv for a while and then we, too went to bed. It’s slightly more complicated than going to bed in Chippenham, but we’re  managing!

28th April - CCH - The tunnel is nearly finished!

No more clandestine knitting last night as Sherley had been practising at home, and all was ok. Pre bed sugars 11.3, so went to bed and had slightly more buttons than usual and 3 rich teas.

Woke up at 2:30, tangled up in my earbud cables. Switched radio off, had drink, went back to sleep.

Woke up just before 7, when there was noisy activity on ward. Morning sugars 6.4. Put Radio 4 on and did some surfing until breakfast. I knew I wouldn’t be got up until later as I was scheduled an occ therapy session, which means they get me up rather than the care staff (partly so they can assess progress and partly to ease pressure on care/nursing staff). This meant a careful balance of timing of going to loo  – can I hang on until I am got up, or will I need to ring bell? It doesn’t help that you don’t know exactly when you will be got up.

In the end, I needed the loo, so rang bell. Put my shoes on (need them for the walking) and walked to bathroom. Sat on loo, and left to my own devices. Finished, so rang bell again, and Stella the OT arrived to carry on. Washed feet and legs whilst on loo (had a tricky balance moment reaching my toes which were on the bottom rail of the frame, but I think I got away with it without Stella noticing!) stood up to have nether regions dealt with, pulled up pants and trousers, and walked into bedroom and chair by sink and got on with washing and dressing top half. Managed to finish this, pull back curtain, open door, and put nightie away in cupboard and get settled in chair before Stella came back. I think I can manage this quite well.

Just as I’d got settled, the hot drinks came around – great timing as sometimes I have missed out on this in the past as I’ve  either still been in loo, or door/curtain shut!

New patient wheeled in by ambulance transport people past my door from left to right, then a few minutes later, back in opposite direction. I think they must have put her in room 1 next to me.

Then some work – revising a lease and a letter of dismissal, plus some other stuff. Researched care providers. Made another doctor’s appointment for next Wednesday for a catch up (the appointment I had to cancel for yesterday).

Had a look at my Facebook page as Sian had put up about my blog, and emailed my Bench Chair who had emailed asking how I was, so I told her! I also mentioned having a recce to Swindon Court and asking for a dispensation so I don’t have to go to Salisbury (being in wheelchair is a bit more drastic than just arranging swaps for Salisbury sittings!).

Julio has been texting/ringing – he has had an interesting conversation with someone we know that is in the care system and has found out about Informal Care Plans which have some legal status but everyone in the system seems to pretend don’t exist! He will speak to Sharon.

Pre lunch sugars 17.2 (stress?). Lunch salmon fish cake, mash and baked beans (and I was given a side helping of parsley sauce in case I wanted it. Me? Parsley sauce? Of course!). Dessert was an apple – and then I was offered some ice cream (it’s ok – it’s suitable for diabetics). People are being very nice to me!

Sharon came and talked about the conversation she’d had with Julio and that she had also spoken to the Malmesbury care team manager, who had heard of informal care plans, but not sure where they fitted in with the legislation. Agreement that we would be flexible with the timing of the visits (9.30 or later for the morning one to avoid the rush hour) and another at some point in the afternoon. We will abandon the evening one. Sharon went off to speak to the ward manager about it. Nurse came and gave me more kit. They have again contacted the community team in relation to catheter replacement and care.

Blood pressure 116/56. I had to fill in a menu choice for Saturday, even though I won’t be here (I have made my usual choices and hope that whoever is in my bed likes ploughman's!).

Lots of texts between me & Juli about the developing situation. I have also called the GWH to confirm my scan appointment for my kidney on Tuesday. It is at 12.25 , so we need to be there at least 10 mins early. Luckily, it is via the health insurance, so we will have free parking at the entrance.

I was then asked by Alice the physio if I would mind if they locked my bathroom door so someone else could use it. "My” bathroom has two doors; one from my room, and another from the corridor so that if the person in the room is confined to bed, it can be used by other patients. I said that was fine, as to be honest, I do feel a bit guilty that I am the only person on the entire ward with my own loo. Alice then came back later and said it was ok, they didn’t need it as they had decided to remove the extra wide commode chair and take it into Room 1 (the new patient) and use it as a commode rather than a loo seat.

So, it is now 4pm. Things have quietened down in terms of both activity in the ward and the escape tunnel.

I think I will ask to lie down for half an hour to relieve my ankles.

Lay down for a while, and was going to watch tv and possibly have a little nap, but the time was taken up with texts between me and Julio and looking up local care providers on the Internet. It was then 5pm, so went for a walk to the loo just before supper. Pre supper sugars 17.1.  Supper was chicken soup, a lovely smoked haddock salad and cheese and biscuits. Had a cup of tea, then emailed the NMO team with an update.

Waited for visitors. Sian arrived first, as Juli had been delayed in the office, so we went down and hid outside to surprise him (which we did!). Sat by the drinks machine and had drinks and talked about coming home, BBQs, having steak in a restaurant (not fussy which – Harvesters or Beefeater is fine for me!). I am also wanting to vary my cheese and biscuits and have Hovis biscuits and Stilton, or Cornish wafers and Brie.

Summarised everything about the escape tunnel. Back to room to remove everything I didn't need tonight or tomorrow to minimise the amount of stuff that I have to take tomorrow as there will be a lot of stuff in the form of the continence supplies and meds, as well as the wheelchair and walking frame. Julio will be taking me home in the mini.

We had a chat with Ellen, then they left.

Watching Masterchef (not sure if I’ll be allowed to watch it at home).

Goodnight – hopefully next update will be sent from home!