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.