Since I have been waging war against MS the biggest battles that I have fought have been in my own ‘back yard’.

I’m a kind of ‘glass half full’ person and I couldn’t see MS ever getting the better part of me.  I’m living my life to the best and mostly, having a great time. I have been on some adventures and experienced a LOT of good events.

Over the past 40 years I have travelled in airboats through the Everglades, jumbo jets around the world and helicopters over the top of and to the bottom of The Grand Canyon, but it is a constant challenge in East Sussex to carry out the simplest things, like finding out my own weight.

Every so often my GP carries out a routine health check on me, you know the sort of thing, blood pressure and diabetes testing, withdrawing small phials of bodily fluids for scrutiny and some obvious questions, ‘how tall are you?’ Well, last time I stood up  I was  5’3″, but I am 4’2″ in a wheelchair! That’s the sort of answer the flippant me would like to say, but I have to respect my GP, so I won’t. The next question is, “Do you know how much you weigh?” Well, that’s a bit of a sore point with me, because it’s almost impossible to find anyone who can help somebody who is just unable to stand of scales. I have been trying to find out my weight for a while now, and I come up against brick walls every time.

I know that it is possible to attach a set of digital weighing scales to a hoist. I have experienced these scales in previous visits to hospitals regarding measuring my weight to know how much anaesthetic to administer before an operation, but that was a while ago, and my weight has changed since then. I know that it has, but because I don’t need to wheel myself around any more and because I have stretchy clothes, I don’t notice the weight going on around my middle. Asking my local hospital, which is what I did yesterday, is farcical. I started with the phlebotomy department and they suggested that I ask at the main reception. I headed over to them and much as they tried their best to be helpful, they directed me to the physiotherapy department. “If you go down the corridor, right to the end, turn right, go down one floor in the lift and then turn left out of the lift, you’ll come to the physiotherapy department.” So off I trek and reach the department where I am met with blank stares and questions of “Why do you need to know?” Well, because I haven’t found out for a few years and I’m inquisitive. “Our therapist is with another patient at the moment but can I get her to call you when she’s finished?” Time is running on for me now, and I have things to do and places to be so I asked very nicely if that would be possible, and give her my telephone number. “In the mean time, perhaps you could try East Dean ward, and I’ll get them to give you a ring as well.” One out of two rang me back that afternoon, and I was fairly optimistic that perhaps there would be a possibility that someone would know the whereabouts of the elusive hoist. The matron of the ward insisted when she rang me that her ward did not accept outpatients and she could not help me. “But I’m not a patient,” I said. “I just need to find out what I weigh.” “We don’t do outpatients,” she said, and after she’d told me four times, I just gave up.

My weight wouldn’t be an issue in itself if I knew that it was within a reasonable ratio, but my waistline tells me it is not. I know I need to watch my weight, my blood pressure is normal and my diabetes measurement is within the correct parameters, but if I knew what I weighed, I might feel more inclined to embark on a healthy eating regime. As it is, because I am unable to find something so simple, I carry on eating chocolate.

I have a new guest for a fortnight, or maybe less, depending on how things go.

When I found out that my mother-in-law would be on her own for fourteen days whilst my sister-in-law went on a holiday, I felt a bit guilty. My sister-in-law lives very close to my mother-in-law and takes the brunt of the looking-after/caring. I think that’s a lot for her to take on without us, but we live a hundred miles away, so I suggested that while she was away, mother-in-law should come and stay here with us. I think she enjoys coming here, but we’re not sure whether we enjoy the visit as much as she does.

Unfortunately the weather has dictated what we can do since she arrived. I’d like to say that she’s been occupied, I purchased for her an adult colouring set, I thought she might enjoy this as she’s a bit of an artist and has enjoyed painting for many years. Also, I thought it would occupy her while I was doing other things, as my life has to carry on while she’s here, and the rain hasn’t allowed us to go out as much as she would like. I wish that I could still drive so that we could go and visit tea rooms and other attractions that she might enjoy, but the weather has dictated that I don’t want to go out in this weather.

My mother-in-law suffers from dementia, and struggles to remember things. She has told me several times many stories and she starts the story with, “I may have told you this.” I like to think that I’m a nice enough person to not say, “Yes, you have already told me,” even though that doesn’t stop her, as she still carries on with it, regardless! I am very fond of my mother-in-law, after all I have been married forty years and we have got to know each other quite well by now. I have to carry on with life and get on with what I need to do while occupying a lonely lady while she stays with us. Today, for instance, I had to see a dentist, and I had to leave her with my PA, who had strict instructions not to let her go for a walk, because she gets lost, or to let her do any cooking or washing up, because she struggles to remember what she needs to do in the kitchen.

I can’t believe that we have got to the point where I need to babysit an ageing mother-in-law from a wheelchair. I’m not sure who needs more support here. Is it me, or is it her? She needs more mental support, and I need more physical support.

I’ve often asked myself, what’s worse? Is it losing your physical abilities, or is it losing your mental faculties? From where I am, it’s losing your physical facilities, but she might say that’s it’s losing her mental awareness. But then, she doesn’t know that she has lost that ability to think. It’s funny, how I feel thankful for my mental state, even though my physical abilities are ‘shot to pieces’. I don’t think MIL is aware of her loss. She tells me that an old neighbour phones her to sit with his wife, who has dementia, to care for her while he gets a break. My MIL is 88 years old, and doing amazingly well. Her physical abilities are awesome. She plays football with her great-grandchildren, and has just as much fun colouring with them as physically enjoying their fun in the garden. I think she is astounding in her abilities at the age that she is. I’m awestruck by her get-up-and-go, even though she is driving me round the bend.

MS is a funny old thing. Not funny-haha, but funny-odd. When I was diagnosed, a hundred years ago, I still worried about what I look like. Now, not so much. When I was 17, I used to wear really pretty dresses, honestly I did. I’ve never been one for pancaking my face in makeup, but I would wear eyeshadow and a bit of mascara, lipstick, just a bit, and I hope I looked okay. I wore high-heeled strappy shoes, open toe, I even wore them on country walks, (Mum and Dad, if you’re reading this, remember those horrible red platform shoes?!) Even after my diagnosis in 1981, I could stand, walk and I looked okay.

Now, clothes have lost their appeal for me. I still like to shop, but I can’t imagine myself wearing them anymore. I pick up a nice top, it looks good on the hanger, but in my mind, I’m thinking, “This isn’t smock-y enough to cover my ever-increasing belly.” I spot an attractive shirt/blouse, and immediately think, “Someone will have to button that up for me,” and worse, “Andy will have to unbutton it at night.” Patience isn’t his strong suit. I pick up a pair of colourful trousers and I’m thinking, “Are they stretchy enough?” And so it goes on. I’m sorry to say that my dress-sense these days is stretchy black trousers, a long sleeved t-shirt, because I feel the cold, and a large jumper to cover all lumps and bumps.

If I had any advice for a newly diagnosed warrior, it would be the same as I was told when I was new to this: watch what you eat, it’s easy to eat for comfort. Watch what you drink, drowning your sorrows isn’t good for MS or your liver. Keep moving. If you can’t move your legs, move your arms. If you can’t move either, wave your hands, at least people will think that you’re friendly. And smile. There’s always someone worse off. Back to the clothes.

I would love to design my own range of outfits which would fit all of us wheelchairs users. Anything except black. As colourful as possible, but designed to accommodate all our unusual shapes and sizes. My models would be chosen from the high street, not stick thin willowy size 6s. Shoes would not be provided by the NHS, rather by young aspiring Jimmy Choo apprentices. There is definitely an opportunity young designers to seize the chance to shine and fill a gap in a niche market.

I watched the Eurovision Song Contest last Saturday. I sat through every song and nearly all the votes. When it was becoming clear to me that our entry was doing extremely badly, I gave up. It was past 11 o’clock, and as I usually take myself to my bed, or am taken to bed, at 10.30pm latest, I gave up.

We have been doing extraordinarily badly for years now, and I ask myself why do we continue to put ourselves through this? We find a hopeful singer or group and select as a country our entry weeks before the contest. We try to hype it up, but as we are not allowed to vote for our own entry, there’s no point in trying to ‘big up’ in our own country. We should take our entry to all the other European countries and try and push it over there instead. We hope for the best. I watched the Italian song and was told that it had had fifty million streams. Why is it allowed that other countries seem able to enter already popular songs whilst we enter a song that is not well known and seems unlikely to get the coverage that we would want?

There are five major contributing countries to the Eurovision Song Contest and guess what? We are one of them. This means that even though we pay considerable amounts of money towards the production, we still seem to be the outsiders.

I am interested to relate this to our voting today. Despite the fact that we should have left Europe on the 29th March, we find ourselves voting for a European Parliament. I think that if we had left, is it possible that we could have a referendum on our continued entry to the ESC? It might seem trivial and not as important as the momentous decision we made three years ago, but it seems to me that we could opt to leave with greater ease than we can to come out of Europe.

The voting system in the contest is frighteningly the same as what we are going through now. Music should not be politically motivated, however I don’t think anyone in this country believes anything other than that the voting is politically motivated in the contest and we, the UK, are seen to be European, any more than Australia is!

My mum and dad came to stay for a visit last week. They don’t come very often, and I like to make the most of it when they come. When they come to stay, I am reminded of how I would like my life to be. I remember how I used to enjoy cryptic crosswords and what it’s like to drink tea from a cup and a saucer. I need to jog my memory about what it was like when I was a lot younger and enjoyed word games and reading a book, not watching television.

When Mum and Dad came, they obviously wanted to reacquaint themselves with their great-grandchildren and we did that whilst catching up on family news. It was the next morning when I asked my dad if he could remind me how to do a cryptic crossword, because he’s the master at it, well, in our family anyway. I so much enjoyed that couple of hours with him and I’ve vowed to attempt the crossword every day, rather than waste time in front of the TV. I really enjoyed Mum as well, we  caught up on the gossip and generally put men to rights. It makes so much difference to me to have things done in a different way, a way that I don’t do to accommodate marriage and living with someone else. I don’t ever warm plates for meals because the person I live with doesn’t like it, but Mum always does that and it’s just second nature to her. It’s hot cross bun time, and in my existing life, my buns are served to me with a piece of kitchen roll, having been buttered and sandwiched back together. In my old life, they were split and buttered and served one half at a time. These things seem trivial, but they remind me of what it was like in my previous life. I remember when, as a girl, I enjoyed reading books, playing Scrabble and using a pack of cards to play Patience. Now I play it on my computer and it’s Solitaire. It’s really nice to talk to someone who knows the names of plants in the garden and identify birdsong, simply by the song.

As I said, I don’t seem Mum and Dad very often, and I really enjoy their company when they come, but I appreciate it’s a long way from Winchester and I shouldn’t expect them to always drive to me, so I have to make more of an effort to go and visit them.