Archive for April, 2008
Not good all day yesterday but better this morning. Put it down to over exercising – sore legs, but it was also hotish and very humid.
Browsing clothes section of SM and a 6 or 7 year old chinese girl, as bright as a button, came up to us and said ‘Hello’. We responded. Then she asked ‘Where are you from’? We said ‘England’. Then she asked our names. Then she said ‘What do you like’. Not understanding, we asked her what she liked. She said ‘hamburger’. I said I liked icecream. She said ‘I like too’. We, and a couple of chinese, all smiled away. It was delightful.
Had Lumbar Puncture 3 – went OK
Had Carry-in meal. Chilli chicken, no salt, replace peanuts with cashews. Great. Sorted chinese food out at last.
April 28th, 2008
Overdid PT with weight put on bad leg – shattered. Don’t really think it good to overdo exercise when have MS. Not good all day
April 26th, 2008
Another beautiful sunny morning- feeling fine – day off – no activities today.
Did own PT today and did 100 small steps continuous holding on to Richard.
Went to hairdresser in taxi for wash and blowdry – included scalp massage – all for less than 2GBP and tip refused. But lost my expensive perm curls and have new smooth modern chinese style. Richard likes. Still to make my mind up.
Legs not good at hairdresser – when I’m not relaxed. Their ability comes and then goes.
Richard counted 7 big buildings being constructed from our window. We are 30mins from Hangzhou. Market garden(opposite hospital) won’t last long. Hangzhou district 8 million population.
April 26th, 2008
A beautiful sunny morning. No headache. Feeling stronger. Back nearly better – can bend down. Fully dressed myself. Tottered across room without holding on to anything – good.
PT has improved my broken arm/shoulder a lot – pain free and movement pretty good. Thanks Andy. Better than physiotherapy back home.
Did well all day. Feeling that I am getting back to level before I came – walking and balance better. Not sure whether to do with stem cells or not.
April 24th, 2008
Computer working at last. Got crossword off and emails. Lovely to get your messages. Thanks.
Legs still worse than UK but back getting better
Are now regulars at the SM down the road – dicing the wheelchair with the scooters and cyclists. Girls in the soft toy shop in the SM smile at me and now I wave to them. Locals love to see what we have put in our basket. Bought a bottle of Chinese white wine – a lot cheaper than Lindemans – but taste???
Had LP today at 2pm – went well. Slept for 2 hours and the 6 hours lying down to prevent getting headaches passed OK with Richard and crossword and TV. But saline drip too slow and nurse made me lie in bed for a further 2 hours – very grumpy – no glass of wine.
Sent out for Indian style chinese meal – looking forward to a nice chicken curry!!! Got some chicken bones with a skim of meat on them plus some lettuce like veg, plus a not ordered soup with 2 small meat balls in it. The rice was OK!!! Not Chinese cheap either . Richard very grumpy.
April 24th, 2008
1 week gone. Chloe and Gordon’s birthdays. Gordon on hols.
Engine with 54 coal wagons on it – amazing
Went to Supermarket(SM). Forced Richard to replace his 10 year old T shirts by buying 5 new ones at 6GBP each. Going to look for better stuff for me.
Staff again doing singing practice for concert on 2nd anniversary of hospital being built – not too out of tune. They were singing the ‘Long March’ song. They were very surprised that Richard knew about it and Mao and Chang Kai Chek and the Kuo Min Tang(spellings??) and going to Taiwan. They are a little insular. They have all given themselves English names so that we can remember them. Helen says that she used her name because there was a lady on TV that she liked, called Helen. She gave us her real chinese name and we decided that Helen was a bit easier for us.
April 24th, 2008
Peaceful day today. Normal weekday programme of PT, EWT, Acu, But had EWT on my sore back as well as legs. Legs still not good.
Sid(translator) managed to get us Telegraph crossword at last and completed it(just little cheats with solver). Computing not good , can’t get Xword or emails, told to try late night, Richard to do.
DIY food organised now. For lunch, brown bread toasted, camembert, tomatoes, cucumber, ham, tinned mackeral, followed by marmalade and tea/coffee. Great!! Just like home, but only get 6 rounds of bread in a pack
For dinner, veges here are better than home. Real orange carrots, super onions, spring like greens. All go into WOK with green pepper, ginger, chicken breast pieces and curry paste, plus 2 potatoes microwaved. Then washed down with Nescafe icecream. Making 2 days dinner at 1 go. Need to further view veg and fruit at supermarket and experiment a bit.
Richard had go on exercise bike. Needs to keep fit as carer.
Rained today so did not venture out. Clothes section of supermarket tomorrow – Ho, ho, ho!!!
April 21st, 2008
Went to loo in middle of night with help and felt much better whether due to getting over the LP, the paracetamol tablets, or a glass of white wine I had late on in the evening. I noticed that my urine flow was greatly improved – first big plus for the stem cells, though legs still worse than back home.
Not bad this morning, but taken paracetamol tablets. Asked nurse about special chinese pain killers. She offered BRUFEN!!!
Nice breakfast again. Counted 18 carriages on passenger train, more than 20 on coal trains. Can get a bit boring here. Annoyed that computer system can write my blogs OK but have not been able to print Telegraph crossword for 2 days.
Went to supermarket. Needed bread. Sunday is really busy, there are a lot of chinese. But we fought our way through. The wheelchair could do with a horn.
April 20th, 2008
Had Lumbar Puncture at 9pm last night. I had a saline drip going before and after the LP. Had an analgesic before the LP. I told Richard that the doctor liked me – I didn’t complain about the pain. Richard said ‘But you said there wasn’t any pain’!!!
Had to lie on bed for 6 hours without moving head up and down to avoid headache. Can lie on back or side. Back painful. Hard going. Good job got softer mattress. Richard sat guard with bedpan, drinking his beer and reading his book.
Not too happy this morning. Back hurts. Legs bad. Can hardly move at all, but no headache. Manage ablutions and cheer up with home breakfast of rice crispies and marvel milk and nescafe decaff.
Nurse phoned for laundry lady who picked up clothes in 30 mins. Great service around here.
Chatted to Canadians Ron and Elaine. Ron has MS with bad legs like me. They had not heard of LDN for MS treatment. After 2 stem cell injections, they are being sent to Haikou for bone marrow transplant stem cells as they are not ready to do this here yet. We need to check this out for our BMT treatment.
First effect of stem cells – I feel my cheeks have gone a bit rosy. Not feeling good all day with nasty back pain. Should have taken pain killer. Just sat and read book. Went bad in evening and could hardly stand or raise my right leg. Had to get wheelchair to get to toilet – horrible.
April 20th, 2008
Knock on door 10 times this morning. Not left to be lonely. Always with a sunny smile.
6 doctors visited and was prodded and poked. They said that the MRI head scan was not much different to the one we brought from 2003, although my right leg is so much worse.
I’ve got worse since leaving home, but Canadian Ron, another MSer with bad legs, said this was the same for him, so hope that it is just the stress of the journey. Was told by Canadian Joe that the stem cells become most effective between 2 and 4 months after taking them, so will have to be patient and not expect to be running at the end of the month. He also said that oxygen after 3 months helped the stem cells to work better – to ask Kirschner at Beike.
Been having a sore back due to mattress being too hard. Worried about having to lie on back for 6 hours after lumbar puncture. Thought what to do for ourselves? Finally, just asked the nurse and lo! was given a softer one. We are too used to looking after ourselves.
Richard took me out to the supermarket in a wheelchair. He needed it to carry more beer back to save his arms. Tyre a bit flat so nurse came to use pump at entrance to hospital, used by all the bicycle /scooter taxis. She flattened the tyre in her attempt and the brave guard on duty rushed to show his manliness. He pumped up the tyre good, too good. There was a loud explosion as the innertube burst and I was nearly thrown out of the chair. Off we went deciding to avoid the foot drop off the kerbs and mixed it with the cyclists and scooters on the road.
At the supermarket we had to negotiate 4 moving ramps, 2 up and 2 down with me in the chair with Richard calling ‘brakes on’ and ’brakes off’ – exciting stuff – I did a good job. Supermarket huge with a clothes floor and a food floor. Looking forward to next visit to the clothes floor. Safely home with more beer, corkscrew, veges and icecream.
Stem cells arriving late so lumbar puncture now put off until 8PM
April 18th, 2008
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