Oh, my days!

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.

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I Look Like a Bag of Old Jumble

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.

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Eurovision Misery

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!

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Am I The Only One Out Here?

I’ve been blogging for a while.  It’s a good way for me to tell you what I want to and I was hoping that I would attract a bit of ‘passing traffic’, but it would appear that I’m talking to myself and you know what it’s like when you talk to yourself? There’s no one listening.

I don’t think my blogs are boring, some of them are interesting, some of them are funny and some are poignant.  Where is everyone? It’s fashionable to blog, some people are making money from their blogs and some are becoming ‘J’ List celebrities. Why aren’t I? I feel so lonely, just a comment would be nice, it acknowledges my existence.  I’m not expecting to make loads of money, I don’t want a Maserati out of this, a Renault Clio would do, I’ve got the diamond ring and I’m living in a nice house.  Okay, it might need adaptations, but apparently they’re in hand.

I could tell you about the conversion of the garage, but are you listening? I know my family read this, but I need to appeal to all of you out there.  What am I doing wrong? Is it because I don’t know the technical terms? Am I too old to blog? Is there a ‘blog clique’ out there that I’m not part of? I feel like an outsider and I’m knocking on the door.  Please let me in.  What’s the secret? What part of this process am I missing? Why aren’t you all responding to me? I want you to talk with me. I’d like to make friends and ‘meet’ people.

I’m active on social media, I link my blog to Twitter and Facebook but people are not retweeting or sharing.

I need to rethink my strategy to become even more ‘out there’.

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I’m Coming Back As A Man!

Not for my father’s eyes or those of a sensitive disposition

If I’d known it was going to be this hard to have an ‘X’ chromosome, I would not have accepted the gift.

As a female, life is hard, believe me.  Age 12 or 13, those hormones attack us like Leapy Lee’s ‘Little Arrows’ hitting you everywhere.  Pretty much all of us are hit with puberty and the ensuing periods, pain, cramps, mess and sanitary expense (with VAT).  The only exclusion we get from that is pregnancy and don’t even get me started on that!!

Once we become intimate (no, I’m not telling you when I did) we then have to endure the delights of the cervical smear test….one word: Stirrups! And speculum, I know that’s two, but….

Now, I’m taking you on a journey North, which will go South eventually, at the time the above stops: sagging boobs, which are pummelled and bullied into two sheets of Perspex in order to get a camera photo – positively pornographic but not for the purposes of the Dark Web (unless you’re really twisted).

When periods finally come to a conclusion we might think things will get better, they don’t! We start the regime of mood swings (again), hating everyone and the hot flushes – remember, women don’t sweat.  The duvet cover flies across the room at night, windows open in January and wearing layers in order to shed them at will.

And there’s the cost of being a woman.  Our hair is more expensive to coif, it’s more costly to harvest our natural bodily fuzz, have you ever compared the price of pink or pastel razors to generic Bic razors? Our clothing costs more, our fragrances cost more than men’s colognes.  There are certain stores where cleaning equipment can be purchased cheaper than supermarkets which are mostly frequented by women – I’m thinking of you Halfords.

It’s almost as if women are VAT rated, or at least it feels like that.

 

 

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A Little Bit of Refinement

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.

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Brexit Past It!

When some of us voted to leave the EU, two and a half years ago, we had the misguided idea that it might happen. However, it seems to be taking an awfully long time. If there had been a cross-party conference at that time, and we had drawn up a comprehensive detailed plan about what we would offer to Mr Tusk and Mr Barnier, we might have had a hope. Instead, we have the debacle that is the mess we find ourselves in. So I have to ask myself, why does anybody stand as a member of Parliament? It would be easy to think that perhaps they want to help their constituents and their country. Apparently not, because the petty bickering that goes on across the chamber in the House of Commons would suggest that the best for the country is the last thing on their minds.

 

I heard an MP from a party suggesting that it’s ‘ridiculous’ have talks with the Opposition. “We don’t talk to the Opposition” is what he said. No, apparently they just shout at each other, and I have an idea for a new type of politics. Forget whether you’re a Tory or a Labour, but rather have MPs elected on their counselling skills, talking, communication with each other, and work together for our country, our education system, and our health service. This belongs to all of us, and for the good of all of us, we now need to forget all the bickering, nasty remarks and insults, and perhaps all pull together to improve the health of the nation. I hope that doesn’t sound too Churchillean, but the more I see and the more I hear the ridicule that’s coming out of the House of Commons, the more I think I want to run away to somewhere that isn’t marred by this petty bureaucracy. I hope that Mr Corbyn and Mrs May can sort something out, but I’m not optimistic, because I think they’re too entrenched in their beliefs instead of feeling that we need to all work together. Meanwhile, the works on the House of Commons aren’t going as well as expected. There’s a leak, and proceedings have had to be delayed whilst somebody comes in to fix it.

 

Does anybody think it could be PM?

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Home Surgery

My ear has been a bit blocked up recently, it’s not an infection but a build up of wax, or so they say…

One of my PA’s has suggested that a spider might have crawled in my ear at night, because apparently that’s what they do. We’ve only got her word for that, no proof. It could have been an earwig.  Anyway, my junior daughter asked me if I’d ever tried “those candles” I’d heard of them but had never tried them.  Laura thought they might be a good idea so she collected and bought two and came back to experiment on me!

With the help of my PA, she set to her minor surgical procedure, I had to rest my head 90 degrees on a pillow and she introduced the candle to my ear cavity.  She had to protect my hair from falling ash and as the suggested paper plate wasn’t available last night’s tea towel had to do.

As I lay contemplating this situation, the aromas of the previous evening’s dinner kept coming back to me.

“This tea towel needs washing!” I said.

‘The candle has to burn down to the red line’ the instructions read.  This took about 15 minutes.

I had no neck pain because I’d lost all feeling on that side.

After the allotted time the inside of the candle was examined with only a little wax and no spider.  Laura was using her phone’s torch to peer into my ear and managed to see clumps inside but couldn’t get to them with the cotton bud she was poking in.

The next step was to try a remedy suggested to my son-in-law years ago by an American redneck woman.  He used to get very stuffed ears after swimming when he was a boy.

Hydrogen Peroxide!

I thought that’s what we used in the ‘olden days’ to bleach hair.  Luckily, son-in-law has some at home. He brought it around and I tilted my head once again, I was warned that it would be cold and might fizz a bit. It did!

However, it hasn’t worked and apparently I need to spend £50 syringing one ear!

If the public weren’t so squeamish about disability, this would make a fantastic scene in a sit-com.

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Don’t blame MS

MS isn’t all its cracked up to be, for me personally it’s reared it’s ugly head, even though it’s not me who is incapacitated. Husband in a Hurry hurt his back just bending down to his sock drawer, three weeks ago.  It’s amazing how much it has affected my care.

He has been unable to get me on to the stairlift, which is needed because we live in a house and I’m wheelchair dependent.  One might ask why we live in a house still, but that’s a whole other story.  I need to be upstairs as we have no showering facilities downstairs.  For two or three days, my daughter came in to put me to bed, but it was beginning to affect her own back which will not do as she is a mother of small children and holds down a job. At the suggestion of Adult Social Care, we moved all the dining room furniture that could be moved out and replaced it with a hospital bed! An offer of respite was also made in case the bed wouldn’t fit.  So now I’m sleeping downstairs, showering has become an every other day event.  This involves hoisting me on to the stairlift seat, which requires two people, one to pull me back on the seat safely and one to lower the hoist.  I traverse up the stairs and transfer to a shower chair, which involves my daughter moving me from stairlift to shower chair as best she can, protecting her back.  I have asked for a hoist at the top of the stairs, but it’s been pointed out that if one castor were to be balanced over the top stair, not only would I fall downstairs but the hoist would crescendo down on top of me.  This is a freestanding mobile hoist as the layout of my first floor does not allow for a ceiling tracking hoist.   You can see how complicated this is getting, can’t you?

I have never let MS take control of my life, however, this is becoming a farce.  I am steadily losing control of my life, my choices and options are falling further away from my grasp. It’s things like not being able to choose which clothes I am dressed in; because they are upstairs and I am not.  I cannot access my hair and tooth brushes and I hate asking for them. I cannot independently get myself up in the morning, or put myself to bed at night.  When a member of my team is unable to perform the tasks required to help me, it highlights how reliant I am on others.

No one is to blame for this, it’s a case of reworking my lifestyle.

How can I make life better? Should I ask for more help, which doesn’t sit well with me and lose more of myself? Or should I take back command?

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Friends Un-reunited

I’m sort of writing this book, its about my formative teenaged years.  A big part of this time is school.  A lot has happened in my life since I left school at age 16 with grand ideas and big plans, but that got waylaid by love, which is suitable bearing in mind it’s ‘that day’ again.  Because life got in the way, I wasn’t very good at keeping up with my friends from school days; I’ve got one schoolfriend left and she’s busy in her life and a long way away from where I live now.

I went straight into Waitrose when I left school, because all my school friends were working there and I loved it.  It was thought that I was not taking a career seriously enough and having far too much fun, which you’re not supposed to have at work, so I buckled down and got a proper job in the Inland Revenue, in HMRC.  I was bored as hell there and I spoke to a sister of a schoolfriend, who told me about her job in Lloyds Bank, she encouraged me to go and talk to her manager and the rest is history. I met ‘Husband in a hurry’ although he wasn’t in a hurry then, he took me to football matches on dates, we got engaged; I couldn’t wait for the ring and we walked down the aisle together.

We bought a house, we became parents and I was diagnosed with MS when I was almost 23.  It turns out that my GP knew when I was 19 but didn’t say anything to me.  Two children and a husband and we are 40 years down the line and I need to make contact with school pals, they can help fill in some spaces in my MS brain.

You won’t believe how hard it is, I’ve tried, I’ve tried.  It’s like school never happened.  I must admit I’m getting a little paranoid.  I keep thinking that they’re all in touch with each other and I’m not included, which takes me back to the school days when I felt that everyone was talking about me behind my back.  I don’t think they are, but my irrational mind says otherwise.  Now, I know that one of my youthful boyfriends lives in California we were in touch on facebook for a while and then he unfriended me,  why Anton? Why? Girls get married and change their names which makes it hard and I’ve searched but to no avail.  I have Tweeted Romsey Advertiser and libraries in both Chandlers Ford and Romsey this morning in the vain hope that they might be able to help.

If I don’t hear anything soon, I’m just going to make stuff up!

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