Well I've had a pretty busy week - by my standards - and I just thought I'd share it with you. Not very exciting but it will give you an idea of how I spend my time.
Monday was a fairly standard day. Got up around 8.30 am when my carer arrived, showered and dressed before breakfast, which normally consists of my pills for the day (!), toast and marmite, tea and a glass of orange juice.
I then spent the morning on my computer, catching up on emails, looking whose on facebook, and then looking at all the other silly things which easily distract me on the internet. My Carer comes about 12.30 pm and once she has left, its lunch time.
After lunch, I spent a bit more time on the computer, before getting into my armchair about 3.00 pm and having a nap and then reading my book until dinner at 6.00 pm. Monday evening dinner is usually cold left over meat from the Sunday roast, with potatoes and veg, followed this week by Rice Pudding - yummy.
After dinner my Carer comes and gets me ready for bed and puts me back in my armchair where I sat and watched Aston Villa thrash Sunderland, before going to bed about 10.30 pm.
Tuesday I had a different Carer, as Margaret, my normal girl has a day off. The Carer today comes at 7.00 am, which is great as I like to get up early. Normal routine of shower, dress and breakfast.
At 9.00 am I am collected by the local Dial-a-Ride bus - for those of you who don't know about this scheme, it provides transport, locally for elderly and disabled people, so that they can get out and about in the community, at a subsidised cost - and this takes me to the Douglas Brunton Centre.
The Brunton Centre - for short - is a local community centre for over 55's, where they can go and socialise, do various classes or join groups, in a safe enviroment. They also provide hot and cold meals at lunchtime, which are really nice. It also has facilities such as a hairdressers, chiropodists, and bathroom, where you can go and have a bath safe in the knowledge that there are people and equipment to help if you should get stuck or in trouble.
They also have a computer suite with 5 PC's, and I go every Tuesday morning between about 9,15 am and 1.30 pm and give lessons to any "silver surfers" who want to learn how to use computers. Usually its pretty basic stuff about how to look things up on the internet, and how to send emails, but occasionally we get someone who wants to know a bit more.
I enjoy these Tuesday mornings, as its something a bit different and makes me feel a bit useful, and the people I meet are usually very friendly and interesting. Many of them have lived through WWII and have done and seen things which most of us now could not even imagine, so I really enjoy talking to them. The other benefit is that it gets me out of the house one morning a week and gives mum a break from me, when she can relax and do her own thing.
I get home about 2.00 pm, and after lunch, I'm usually exhausted, so its into my armchair for a rest and read my book until dinner at 6.00 pm.
After dinner, and after my Carer has been, my friend Paul comes round to help move the washing machine as this appears to be going wrong, and keeps tripping the trip switch on the circuit board, so we can move the plug to another socket and see if it is definitely the machine or the socket.
After some TV, I've no idea what I watched, its off to bed at 10.30 pm.
Wednesday morning starts at 5.30 am. Margaret comes early atnd gets me showered and dreseed, as I am off to hospital today and this means I could be picked from 6.00 am. I have breakfast and then wait for the transport ambulance, which arrives at 7.00 am. Its the regular driver who usually picks me up in the morning as he lives locally to me, but he's running a bit late. At least I know I'm in safe hands and he knows the best way to go.
I am off to the Royal Free Hospital in Hampstead, North London, which means we are travelling right across London. I go every 6 weeks to have an infusion of Methylprednisolone, and to see my Consultant, Prof. Chris Denton.
Anyway the traffic is pretty good and we make good time. We take a fairly direct route from home to the Thames, going through Croydon, Streatham and Brixton, and cross the river at Vauxhall Bridge. We turn right just over the river and go along the north bank, past the Houses of Parliamnent, into Parliament Square and past the statues of past great prime ministers, such as Churchill, and world leaders, such as Nelson Mandela, before heading up to Trafalgar Square, past Nelsons Column, and then heading north into Camden, and reach the hospital at about 8.30 am.
After a quick dash to the toilet - I always need this when I get there - I go to the ward and get checked in. There give me a lovely cup of tea, help me off with my fleece, and then I go to get my cannula put in. There's quite a queue already so it takes about 30 minutes before I get in to have mine done, and just for once he finds a vein first go and has my cannula in, in record time.
It's then a case of waiting for the nurses to get me hooked up to the drip, but in the meantime, Steve, from my respiratory team arrives and gives me some filters for my BiPap machine.
I have been coming to this hospital for about 15 years and I have been fortunate that the nurses who are on the ward now are pretty much the same nurses as when I first came here. We know each other really well and I feel that they are more friends, who happen to be nurses, than just nurses. We can have a good laugh and joke with each other, and I know that they will get to me as soon as they can, so there is no need to chase them, unlike some of the pushy patients - gggrrrrrrr!
My Consultant isn't in today so I won't be seeing him, but I'm not having any problems so I'm happy not to have to wait for him to come round.
I get hooked up about 10.15 am and the drug only takes an hour to go through, and even with a quick saline flush, I'm finished, disconnected, cannula out and away by 11.45 am. I stop off at reception and book my next treatment, before going down to the transport lounge - which here is a nice, cleaner looking area, although badly designed, in terms of space to move patients around.
I've only been here 10 minutes and a driver comes to say he'll take me home. We leave about midday, and go a slightly different route home, past Lords Cricket Ground, down past Regents Park and then along Park Lane, past Hyde Park, to Hyde Park corner, round the Wellington Monument, down the back of Buckingham Palace, through Victoria, over the river at Vauxhall Bridge and then straight home. I really enjoy these trips through London, especially when its a nice sunny day. Say what you like but I think London is the greatest City in the world. There is so much to see, so much history, and everything is see close together, its just a great place. Well that's my opinion any way.
I get home about 2.00 pm, and after a peanut butter sandwich, crunchy of course, I get on my computer to look for a new washing machine as this one has definitely had it. After getting really confused on all the models, spin speeds, load capacities, environmental ratings, blah, blah, blah, I finally order the first one I looked at.
And then its into my armchair, and I'm out like a light. Mum wakes me just before 6.00 pm, and gets me back in my wheelchair, and the goes off over the Fish 'n' Chip shop to buy dinner. As we can't always predict what time I'm going to get home on a day out at hospital, we usually have Fish 'n' Chips, as its easy, local and we can have it on a plate in about 10 minutes.
After dinner, my Carer comes, and after watching TV, again I've no idea what, I'm happy to get to bed at 10.30 pm. I am probably asleep before the light goes out.
Thursday starts about 8.30 am, with the same routine of shower, dress and breakfast.
I then get on my computer and have to do a little bit of preparation for a meeting at my local medical centre. I get ready to leave about 10.40 am and am at the medical centre ready for the 11.00 am meeting.
I am Chairman of my local medical centres, Patient Participation Group. Simply, we are a group of patients who work with the practice to raise and resolve patient issues with the services provided, run health related educational events and conduct a yearly patient survey, on patient satisfaction. I am very lucky that the medical practice is very well run and the doctors are excellent, so that certainly makes our job easier.
We have a number of issues on the agenda which we get through quickly, and then I have to raise the issue of the AGM, which is due in September, and the fact that I have been Chairman for 2 years, and therefore according to the "Rules" for the group, I need to stand down. The same applies to the Secretary and Treasurer. I do not anticipate there being anyone willing to volunteer for any of these roles, so at this time its just a case of getting them thinking (?) and seeing what will happen. I expect there will be some words said at the next meeting, which won't be very pleasant.
I get home just before 1.00 pm and have lunch, and then spend sometime checking emails etc, before getting into my armchair, having a nap and reading my book.
After dinner, its more TV - Masterchef Fnal - and then to bed at 10.30pm.
Friday again starts at 8.30 am with the usual routine.
At 9.30 am, Liz, my physio arrives. Liz is a private neuro-physio, who I located through the local MS Society Centre. She comes to me roughly every 2 weeks, and spends an hour stretching my muscles, and moving my arms and legs in order to try to maintain the range of movement I have. This is important to stop my muscles contracting from sitting in a wheelchair, and helps me keep a degree of independence in my movements. It has also been a big part in my being able to stand in the standing frame at NHNN - see my previos blog.
After Liz has gone I have my one coffee of the day, usually about 11.00 am. I like to have an Expresso, or Americano, but occasionally will go for a Cappuccino. I tend to drink more tea than coffee nowadays, and its unusual for me to have more than one coffee a day. Back in the 90's I worked first as manager of an insurance office and then as the supervisor in an Underwriting office and would drink coffee all day long. I had a very large mug and everyone knew that if they were going to the coffee machine, to make sure they filled mine up. Black, strong and 2 sugars. However, I began to find at weekends, I would wake up really achy, lethargic, unable to concentrate or even function properly, until I started to have a coffee. I knew at this point I had a problem, and stopped drinking coffee completely. It did take sometime to get over not having a coffee, but I certainly felt better for stopping and am careful how much of it I drink now.
I spend sometime on my computer before the new washing machine turns up just before midday. The guys disconnect the old machine, get the new one unpacked and installed. They test it and are on their way in about 20 minutes.
Margaret, the Carer, comes shortly after, and whilst I'm in the toilet, she gives mum a quick demonstration of how the washing machine works. With mum filled in on how the machine works, Margaret goes off, and we have lunch.
I do a bit more on the computer in the afternoon, mainly emails relating to yesterdays meeting, before retiring to my armchair for, sleep and book.
After dinner and my evening Carer, its TV and then bed at 10.30 pm.
And that's my week. Busier than normal, but not too bad. You'll have noticed that I'm very much a creature of habit, doing things at the same time of the day, but when you have Carers come in regularly this tends to make you have to be.
I hope you've enjoyed reading, if you've gotten this far. I probably won't write anything quite so long again..........................but then again I might.
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