Don’t fence me in….at least on sunny, dry days.

There are some things I’m quite good at: socialising, shopping and eating out. It’s always good to have somebody with you, but sometimes it’s fun to go it alone.  I know a table for one isn’t the best, however, at least I get to choose my own food.

Every time I go out I have to take a PA with me.  That involves me paying for someone to come shopping with me.  All my PA’s are very good; they don’t do shopping for themselves because they know that they are working.  I would like to go out on my own just occasionally.  I know I gave up driving my car reluctantly, so I appreciate that anywhere I go has to be within walking (wheeling) distance.

My problem is, escaping my house has become something of a trial to me.  I am allowed a set of keys to my own home! But the challenge is closing the front door behind me.  If I wheel forwards down my ramp and turn at the bottom then wheel back up the ramp, facing my front door (because the door is wide open to allow me out) I can’t lean far enough towards the door latch and reverse back out whilst pulling it shut.  Can you follow this? Leaving ones abode is such a minor exercise, unless you’re in a wheelchair and on your own.

That said, I have done this before.  Let me explain exactly how I have managed it: I leave by the conservatory door, which is out the back of the house, and as the two doors open outwards, I can close them and lock them keeping the key with me at all times.  We have a gate at the side of our house and as long as I ensure that someone has unbolted that gate, I can get out. Hoorah! I need to close the gate and I have connected a long piece of string to the gate handle and I can pull it closed, then I am free!

After a leisurely jaunt around a well known supermarket, I head home clutching my purchases.  Now I have to get back in, before anyone realises that I’ve gone AWOL.  The string needs to be disconnected from the gate and because it’s a gate and won’t dent, I can lean forward and open the latch.  I can unlock the conservatory door with the key, which I haven’t lost, dropped, been mugged for or any of the other unpleasant incidents that people might assume, or predict even, will have happened to me.  Once indoors, I set about to secrete the unhealthy stuff I have bought, finding new and as yet undiscovered cubby holes.

When ‘Husband in a Hurry’ came home from work he would ask why the gate is unlocked and I would tell him that the gardener came that day.

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If I can get to The Grand Canyon …

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.

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The Unpalatable Truth

I’ve had MS forty-odd years.  Before anyone feels sorry for me and says “You’re so brave, you cope so well!” Question: “What else do you want me to do?” Even with MS I have quite a good life; I go to the theatre, I’ve just seen The Drifters and I’ve seen the new movie ‘Yesterday’.  I have good holidays, enjoying cruises and good weather and hopefully one day I will visit Nashville.  I enjoy sport and I understand the off-side rule.  All of this from a wheelchair.  I don’t resent losing the use of my legs because I don’t let it stop me living.

When you see me in the street or you visit me, I hide the bits of MS that are unspeakable.  I try not to let you see me peeing through a tube because my bladder packed a suitcase and left many years ago! I have daily Carers who come in to my house and help me dress and I send you out for a walk whilst they take me into my bathroom ‘to make me comfortable’.  Sometimes, and I can’t predict when, that ‘comfort break’ might not do what it’s supposed to! Then later, when I’m least expecting it and for no good reason that I can determine, things happen in the ‘code brown’ department.  I don’t usually know it’s happened and by the time I’m going to bed, well…you can imagine.

Years ago, two people fell in love and married.  The day was sunny with a breeze in the air, but not a whisper of MS in the wind.  Carry forward thirty years, with two adult daughters (and being at the business end of childbirth is no preparation for what’s to come) that young couple have the hurricane of MS in their lives everyday.  Cleaning up a spouse after ‘code brown’ wasn’t in the marriage contract, it makes ‘for better or for worse’ seem a game of poker.

My feelings of self loathing and disgust while my husband attempts to return my dignity to me, hiding his revulsion, are in stark contrast to how I want to appeal to him.  I’m still a woman, I still want to be feminine and desirable.  I don’t want to be ‘cared for’ by my spouse.  If this had happened whilst my Carer was with me we would’ve dealt with it calmly and I would still feel attractive because they wouldn’t make me feel unattractive.  He isn’t revolted by me but I don’t want him to have to do this.  It’s not fair on either of us.

What I want to know is, where is the support for partners who find themselves in this position? It’s not a marriage guidance thing, is it an MS charity thing? Is it someone’s responsibility to divert unpalatable truths? They might not happen to all MS Warriors, but let’s not pretend otherwise. Where are ‘our’ support groups? Can we get forums together to talk about the dirty reality of MS?

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An open letter to Jeremy Hunt MP

Dear Mr Hunt,

I am 60 years old and I’ve been voting Conservative since I was old enough to vote.  In the early 1980’s I was a paid up member of the Tory party and I was a great supporter of Thatcherism and everything the lady stood for.  In future years I campaigned to get Stephen Milligan elected when Sir David Price retired from the Eastleigh constituency.

When I was 19 years old, with good career prospects and a full life ahead of me, I was diagnosed with Multiple Sclerosis, it started affecting my eyesight and led to problems with balance and finally it took away my legs. Now, 40 years later,  MS has taken over almost every cell in my body.  I am unable to stand and I use PA’s / Carers to aid me in everything within my daily life.  In writing this letter to you I rely on someone else’s fingers to type.

I still have my hearing and I am mentally able to take interest in your Leadership contest.  Therefore, I listened with interest to your interview with Laura Kuenssberg on Tuesday 25th June and in particular to your future plans for Social Care.  I am distressed to hear that you plan to ‘reward’ those who are able to save for their possible infirmities.  I want to tell you that it has never been my plan to require or need support from others.  I would have wanted to always work and support my family and, through circumstances, which I did not invite, I have been unable to do so.

I would ask you, is it your intention to divide this country more than it has already  been torn asunder?  Victims of failing health will become a lower populace than those who stay well.  We will become a further group within an already existing  ‘them and us’ society.  I feel let down, this is not just affecting me, this will impact everyone else who has to rely upon an already failing Social Care Authority.

I never thought I would find you losing my vote.

 

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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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