The State of Play Today

I’m usually a fairly positive person. I try to find the good side of most things and I think I succeed. However, today is not a day for feeling positive. Sometimes things just gang up on me and all come at the same time. Let me tell you about it.

No. 1, I’m feeling tired. I’ve had an exciting couple of days when I’ve seen Mum & Dad and had birthday presents. That’s all good isn’t it? But whenever there’s a high there’s always a corresponding low and I would normally just give myself a good talking to and ‘get over it’. I’ve eaten well over the last few days, which I don’t often do, I’ve enjoyed good company and lots of humour. I’ve had some enjoyable face-to-face conversations and I’ve extended my birthday week into October. All good. These are the days that make my life special and I enjoy them so much, but with MS there’s always a kick-back, it catches up with me and I have to take things slowly for a while.

No. 2, today we’ve had some bad news, a good friend from Romsey days, when I still lived at home, passed away. Graham, along with his wife Doreen were a support network to me during my teenaged traumas. I baby-sat their sons and I took it for granted they’d always be there. Graham had survived a bout of cancer and seemed to be doing well. He was always the life and soul and he used to make me laugh, a lot. Moving to East Sussex somehow became less scary knowing that they lived in the same county and not too far away, even though we didn’t see them much. I am aware that as I age I will lose more loved ones, but it’s never going to get easier.

No.3, is the weather. Hasn’t it rained enough yet? When I woke up this morning it was grey and I thought, here we go, more of the same. However, it brightened up and at breakfast the sun was shining. Obviously, it wouldn’t last and we’re back to grey skies, cold wind and more rain. Apparently, the garden wants it. Tough.

It’s incredible the difference that the weather can make to my mood. As I said goodbye to Mum & Dad this morning, in the bright sunshine, I felt positive about the time we’d spent together and looked forward to the next visit. Yet, when the bad weather set in I just felt lonely and despondent at their leaving. In warmer weather, I might have been able to accept Graham’s passing with sad resignation. He died peacefully surrounded by his family. At the end of the day that’s what we’d all want. But, today, in the rain, I feel the loss for Doreen and their boys, but also a loss for part of my childhood.

It’s more common than people think to be affected by the weather. We harness it’s power for energy and globally we are subject to it’s changes. Climate change is here and if we are smart we can use it to our benefit and make it work for us. It still influences our feelings and emotions and we’re never going to get the better of that.

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The gift that just keeps taking

When I was diagnosed with MS I was unrealistically optimistic about my future. I knew what might happen, but I didn’t really expect some of the more unpleasant symptoms to happen to me. I knew that it was possible that I might become incontinent, use a wheelchair or lose my sight but I wasn’t going to let that happen to me, was I?

Over 40 years they have, well I haven’t lost my sight and I can probably live with the others as long as I don’t go blind. However, I want to talk about some of the other unexpected losses that have certainly happened to me and changed the way I am as a person.

I would like to think, no, I know, that I was brought up with good manners. It’s inherently clear to me how I should behave in certain situations. I learned how to eat nicely and politely with a knife and a fork at the same time, I knew how to hold a cup and a saucer and tea was poured from a teapot. I could apply makeup expertly. I walked in heels and I could wear shirts with buttons that did up all the way to the bottom, indeed I could do up buttons! Well, here’s how it is now for me.

  1. Like most people, with or without MS I need to stay hydrated. We all know about the de rigeur 2 litres a day of water, although it doesn’t have to be water, it can be tea but not coffee nor alcohol. At some point into my journey with MS I needed to use a drinking straw so that I avoided the accidents with fluids. I’m not sure exactly when that happened, but I would think that it was around the time that I could no longer afford carpet cleaning.
  2. I used to know and practice drinking from a champagne coupe, dish shaped of course, by holding the stem and sipping without tipping it down myself. The aromas of an alcoholic liquid in my mouth are lost when it is drunk through a straw. It’s very difficult to appreciate wine when it’s passed through a straw.
  3. I used to eat nicely. ‘Don’t put too much in your mouth and swallow one mouthful before you put any more in’ I was taught. Well, that doesn’t happen any more. I am very aware that it is not particularly pretty watching me eat. The haphazard process of loading my fork and balancing it over the 8 inches between the end of the table and my mouth is precarious to say the least. I can’t lean forward because all my core muscles have packed up and left for the coast. So restaurants are a challenge.
  4. Long gone are the days for me to choose from an extensive menu. I look at a menu in a restaurant now and I eliminate 60% of the choices because there are digestive implications in many of them. I avoid vegetables, lactose, gluten and anything that might resemble close to soya. I don’t know if anyone else has this irritation, but I cannot afford to be too far from my own bathroom, my hoist and PA on call.
  5. I get very frustrated when I can’t reach things physically and mentally, my brain tells me I can do something but my body says ‘Ha!’ I think I can bake chocolate chip cookies, which is okay until I need to reach the eggs in the fridge, on the high shelf and guess what? I can’t stand up. I think that I can dust the top of my picture frame. Well, if I could get in to the cupboard under the stairs to grab the feather duster I could reach the top of the picture frame and again my mind thinks it’s possible but the door frame around the cupboard says no to a wheelchair.
  6. I love writing. This is a constant obstacle for me to overcome. This works on 2 levels really, or doesn’t: a) my fingers just won’t do as I expect of them anymore. They will type, but it is totally unrecognisable as a sentence. Semi-colons, commas, numerical digits are interspersed with random letters. If I was typing for Bletchley to hinder intelligence I’d be okay. It certainly is an Enigma. b) my MS brain can’t always access the correct word for the correct use. I can identify that it begins with ‘Irr’ or ‘Act’ but the random things that come into my head are completely unsuitable for my need.

These are a few of the new and problematic issues when residing with MS. I don’t know how anyone else handles these daily challenges, but I would love to know.

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Something about bins and the people who put them out…

There comes a time in certain people’s lives, generally men, when bin scheduling becomes second nature. Yesterday evening I watched my neighbour place his bin outside his garage ready for emptying this morning and I imagined the following comedy sketch, I hope it makes you laugh.

John: “I’m just popping to put the bin out for the morning”
Estelle: “No problem, John, I’ll put the veg on and dinner will be 10 minutes”
John: “Okay love,”
A moment of realisation flickers through John’s mind.
“Oh good Lord, what’s happening to me, I can’t believe that my life has come to this point, Estelle”
Estelle: “What’s the matter, sweetie?”
John: “I’ve become Mr Patterson”
Estelle: “What, who?”
John: “You know, remember he was our neighbour in our first house.”
Estelle: “What made you think of him after 30 years?”
John: “He always knew which bins to put out and on what day. Remember, we used to laugh, we joked about him always knowing and getting it right. We took the Mickey out of him, we both said he must have his bin schedule on a notice board in the kitchen”
Estelle: “Oh I remember Mr Patterson he was a sweet old guy”
John says: “Yes, I’ve become him! You’re now married to Mr Patterson.”
Estelle: “Oh, I didn’t like him that much”
John: “Estelle, this is not funny, how do you think I know the bin schedule?”
Estelle: “I don’t know, I just assumed you remembered these things”
John, in a moment of blind panic
“Come with me, come and look in the kitchen. Look on the notice board, what can you see?”
Estelle rummages through the scraps of paper pinned to the board and finds the printed bin schedule in a garish lime green.
“Oh John, you don’t have to worry about these things. We all get there eventually”
Over dinner 30 minutes later, John’s alarm over his predictable routines comes to the fore again. Poised with a forkful of peas,
John: “Estelle let’s just go, let’s break out from this predictability of life. We could go to Tangier, you could make jewellery, we could eat figs and honey.
Estelle: “Oh John, that’s a lovely idea but,
John: “Estelle I don’t want to finish up my life worrying about bins. We could die in this suburbanite life.
Estelle: “Yes but John, what would you tell the children? And anyway, I’ve got Zumba on Tuesday evening.”

Is this the virus that’s giving me a wild imagination or, when this is over shall we all do something daring?

I miss the spontaneity of a life before MS. I miss going away with just the barest essentials. I don’t like having to plan as if it is a military operation. I don’t want to have to think about hoist slings and commode chairs and spare catheters, just in case. I want to be that person who packed just enough knickers. I want to be the woman who wore her t-shirt two days running and had a mix of bikini bottoms and sarongs. My bikini days are well and truly behind me, mostly on my bum, but I can still dream of those days when my requirements were so scant.

Perhaps I should start again with a capsule wardrobe!

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The woes of weight

I may have already talked about this before, but please forgive me if I’m keeping on. A lot of articles just lately, newspapers, magazines, have suggested to me about losing weight. I know that I’m a little on the porky side and I would love to drop a dress size. It would of course mean a whole new wardrobe, but I think that it would be worth it. If only it were that easy.

The ‘in’ thing is to get me exercising. Cycling seems to be favoured at present. Everyone should get on their bike. Boris suggested that everyone ought to get a bike, some even provided on the NHS and his idea of giving everyone £50 service payments for their bikes lost it’s wheels when the website crashed!
Running seems to be out of favour although a strong contingent of people take pride in their Couch to 5K achievements.
Walking, briskly, is a good way of shedding the kilos but all of the aforementioned require a working pair of legs, which I haven’t got and haven’t had for many years. So the kilos have crept on my hips and waist and thighs and bum never to be lost.

I’ve told you this before, but finding out exactly how much weight needs to come off has been a challenge to say the least. I have visited Outpatients Departments, A & E Departments and have been sent on a grand tour of my local hospital in order to find a pair of working scales which need to be attached to a hoist with a sling which has a weighing mechanism incorporated because I cannot stand up on my own. As I am aware, the hospital does possess such apparatus. It is required for operations and for physiotherapy purposes, I know these things exist, however clearly not for the likes of me.

Someone must know. If I have a starting point then I can set goals for myself. As it is, I have no idea about my weight in kilograms or stones. I might weigh 14 stone 6 pounds or 12 stone 1 pound, I just don’t know. What I do know is that somebody, somewhere can help me.

I feel like the forgotten or ‘written off’ section of society that should just go away. I am not the only wheelchair user who can’t stand up for myself, literally or metaphorically. There must be thousands of us who just need a helping hand. MS is an incurable condition and clearly my weight or health is not important enough any more.

In this so-called age of diversity and inclusion why can’t I do something as basic as finding out how heavy I am? After my diagnosis, like many others, the NHS washed it’s hands of me and sent me home with a pamphlet.

I could go to a veterinary surgery or a racing stables and have large animals weighed, is this what I need to do?

Does anyone want to see me that degraded?

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Moving down in the world

Those of you who have been following this blog will know of the ongoing garage conversion. You might have read about the delays brought on by Corona virus and my reluctance to have many ‘bodies’ passing through my house.

Well, I’m delighted to tell you that last night I finally took up residence in my new suite. I had planned to be in on our first May Bank Holiday, but things and events prevented that happening. I looked forward to my next date, which was sometime in June, I think, but delays on getting the shutters which I’d ordered in January and I discovered were coming from China, pushed back ‘Moving In Day’ again. The necessity for an Alexa device and an electric blanket, choose which one you think was more important to me, meant that this weekend it finally happened. My initial thoughts were that this move might be daunting. However, I gave myself a good talking to i.e ‘Pull yourself together’ and ‘What have you got to be so scared of?’ told me that I was being a bit of a wimp.

Since the room has been complete, apart from the fripperies, I have been spending more waking time familiarising myself with the layout and my ability to manoeuvre around in my wheelchair. I have bought new matching towels and duvet sets to my taste and I have furniture in place. So moving in to sleep was the next obvious step. Yesterday evening I came wheeling through the kitchen to my room. Husband in a Hurry wanted to watch Match of the Day and I knew that he would come through to make sure I was all right before he went to bed, so I didn’t have to worry about turning off my blanket. It is much easier to go to bed downstairs. I don’t need to be hoisted out of my wheelchair and manoeuvred to the stair lift at the bottom of the stairs. I don’t have to be carted up the stairs and lifted across to a commode chair at the top of the stairs. The only hoisting is with an overhead hoist from my wheelchair into my bed. It removes any danger to HIAH’s back and me falling down the stairs. We are both safer and the whole putting me to bed palaver is much faster. I asked my Alexa device to play Radio 2, listening to Clare Teal and Don Black, and when HIAH came through to wish me a goodnight’s sleep, he turned off the blanket and left me to a peaceful night. I woke sometime when it was light and I asked Amazon what time it was and when she told me it was ten minutes past six in the morning I went back to sleep for another hour until I heard movement upstairs.

This isn’t an ideal situation. We should still be sleeping in the same bed but needs must when the devil drives and it is the safest way to remain in our home for as long as possible. If, anything were to happen to either of us, we could, in theory, still stay in the house that we have made our home over many years. We have spent a lot of time and money investing in a home which fits all of our situations. We have brought up our children here, we can host visitors and large family gatherings. It’s our home.

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Obesity or Fat Cats

One of the risk factors in COVID19 is said to be obesity. Our blustering Prime Minister has a mission to beat obesity and improve the health of the Nation. Having suffered with a bout of sickness himself and with a new son to protect he is obviously going to start with himself. I read an article suggesting that the government is intending to place a new tax on junk food, well they’ve got to get their money back somehow and I wondered if this is the right way to go.

I think that getting on top of obesity is something that needs to go back to basics. I feel that we have, as a society, lost the knowledge and skill to cook simple meals cheaply. As an old lady I can remember, when my daughter was young, buying one lamb chop from our local butcher and one potato and one carrot from our greengrocer. I knew that I could make a wholesome meal for her whilst Hubby in a hurry and I could get by on a cauliflower cheese. These were lessons that I learned at school, in what we used to call Home Economics and by helping my Mum in our kitchen. Today, schools across the board teach a subject called Food Tech which has little resemblance to the weekly task of learning to appreciate the importance of weights, measures and how to combine the right ingredients in the right quantities to bake a cake. I think it’s important to return to a better way.

I find it very easy to use a few basic ingredients and create something worth eating in no time at all. For instance pasta can be jazzed up in so many different ways. Some leftover cooked ham can be sliced up and put in to a cheese sauce mixed with pasta. A tomato sauce made with a shallot and some fresh tomatoes past their best, which are always better, can make that pasta taste totally different. Not every meal needs meat, indeed it’s ethically correct to limit our intake of animal produce. Two eggs can be transformed into a frittata with the addition of a potato and the rest of that green pepper which has been loitering in the back of the fridge waiting for it’s moment to shine. Jacket potatoes are a great way of getting fibre and with the addition of a tin of baked beans and some cheese can be toasted under the grill for a tasty, filling meal.

I don’t want to sound smug about this and please don’t think that I am being in any way ‘Delia Smith’ about these, but if we really want to combat obesity it needs to start at the beginning. Who benefits if we tax junk food? And, if we tax did it work by increasing the tax on sugar, cigarettes or alcohol it just means people are lining the coffers of the Treasury with their hard-earned money and the money isn’t spent to aid the lung cancers and the addiction clinics which desperately need the help. The same would happen if we taxed junk food. It would not be spent to help diabetes clinics or cardiology wards, rather to line the pockets of those who are already eating at Mitchelin starred restaurants and private members clubs.

We have been battling this since the 1970’s, children have been getting fatter and we have become wider and still we have governments telling us that obesity is an issue. Well, durrr, we know that and we don’t like the fact that we are getting bigger. We’d love to live in that utopian world where we all go out for a jog in the morning or play a game of tennis at lunch, which incidentally is a salad with a small glass of wine, but the fact that we can’t do these things is not helped by the pressures put on us by work, commuting, the price of childcare, our time poverty. We are expected to be in 7 different places at once providing care for our elderly parents, care for our children, support for our spouses, I’m surprised we aren’t all in therapy except we can’t bloody well afford it!

If we just rerouted the taxes to help schools teach our pupils the pleasures of cooking and learning to create simple, healthy meals at an early age we could live in that utopian nation.

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Our poor hard-done-by musicians

I’ve always been a fan of Spandau Ballet. Ever since they hit the top of the pops I was in love with Tony Hadley. Sorry, Martin & Gary, but he will always be The Voice of the band. In 1983 my little brother, knowing how much I loved the band, gave me two tickets to see them, I think it was Bournemouth. ‘Though the Barricades Tour’ I was 25 years old and it was my first pop concert. I was still so innocent even then and I got so excited about going to see my heroes. I couldn’t thank Chris enough and I remember the date and it will be in my head forever, October 6th. I didn’t know what I should do at a pop concert, should I scream? Should I sing along? I didn’t have any money to buy a t-shirt, but I think we may have purchased a programme, which has been thrown away.

After lockdown many musicians are talking of how they will get back to live concerts and when they can start again. Accepting that safety is the most important issue and ensuring that their fans can be in safe hands is the first challenge, however, lobbying government to do more is not the only way to get audiences. Thinking outside the box and possibly outside venues, some of the best concerts I have attended have been open air. I’ve seen Billy Joel and Lionel Ritchie in cricket ground venues, Elton John in the grounds of a stately home and the Rolling Stones at Southampton Football Club ground. Another option might be a Drive In concert with the crowd sitting on their car bonnets eating hotdogs. The performer can still rake in money from profits of fast food stalls and open air bars, etc. A way of attracting people back to concerts ought to be reductions in ticket prices, merchandise and programmes. We’re not all in the earnings brackets of the artistes who we are paying handsomely to watch. If people like Sir Paul McCartney, Coldplay and Ed Sheeran really want to ‘make a difference’ they need to think about the people who have been furloughed and made redundant. Perhaps a few free concerts would help.

Maybe it would be a good idea for cosseted musicians to put a proposal together and present it to a Select Committee who would then present it to our government minister of entertainment (there must be one) in which they use their accumulated knowledge in order to resolve their unfortunate concerns (Forgive me Sir Humphrey if I sound a little government speak) I think they could sort it out between them all.

Now all we have to do is get Martin and Gary taking to Tony, please.

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It’s not like me!

I’M CROSS, it’s not you, or it could be, but this time I’m cross about this insignificant virus.  I need to personalise it so for the sake of this blog we’ll call it Wally. When Wally reared his ugly head way back at the beginning of the New Year, I was a little fearful of him. People, as in media, governments and ‘experts’ all said that I should be scared. Look out, he’s getting bigger, he’s started taking lives and our NHS was overwhelmed by Wally. I must admit that I became nervous of his power over me. Wally stopped me being me. Going out became inconceivable, shops were dangerous places and panic buying was one of Wally’s great weapons. Close relatives were convinced of my imminent death and warned me to be afraid. I found that I became worried to venture into my garden because Wally’s microscopic particles could be lurking. I haven’t seen Mum & Dad, I’ve missed their birthdays, Mother’s Day and Father’s Day. I’ve seen them once, safe distancing of course, in Arundel and no hugs or kisses because any of us might find we’ve been attacked by Wally. I’ve missed my grandchildren and my daughters give the best hugs ever, but because of Wally I’m missing out. It was Sunday, Father’s Day when I told myself that I wasn’t giving in anymore to Wally’s antics. I’d had the best day the day before. I saw Finn and Lexi with their Mum & Dad and we’d had a wonderful walk in the sun. It was almost as if Wally had retreated. Apart from one thing, the hugs I got were through back-to-front hoodies. It seems to me I might be acquiescing and handing Wally the power. He’s just a silly little virus, I’m not trivialising this at all but there comes a time when I have to say STOP. I don’t want to go to restaurants, I’m not going to risk my health or anyone else’s but I have to be able to take calculated risks in this battle.

I saw Henry and Meadow on Sunday and I had the best hugs from them. They are back at school and are mixing, in their ‘Bubble’ with other children. I know there’s a greater chance that Wally might return, so Henry and Meadow and I all agreed that this would be the last cuddle for a while, maybe 6 weeks. I can’t tell you how good I felt after I’d seen them. My emotional wellbeing was boosted, lifting my immune system.

When I was diagnosed with MS, 40 years ago, I told myself that I would never give in and I would continue to fight until I popped my clogs. Every new symptom that I have been attacked by has been rallied back, dealt with and lived with. As an MS Warrior if I can take on a huge condition I can certainly cope with Wally.

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Will we ever have it all?

In the early 70’s, feminism was in the forefront of our minds.  We thought we could have it all, didn’t we? Whilst activists were burning their bras, I, at the age of 14, couldn’t wait to get one of my own.  Here’s how I see feminism has moved on since then.

It seemed to me at the time that the Movement was exciting, inspiring and, even at my age in 1972, something I hoped would influence me.  To some degree it has.  I have always believed that I am equal to any man and any other woman for that matter and my life has been shaped to that extent.  However, in the 70’s I feel now, looking back, that the women’s lib movement was a lot of hype or noise and was the start of our search for equality.  Since then we have come a long way but there are certain reasons why we will never have it all.

From the day that our offspring come into the world, women carry the burden of guilt.  If we return to work we trust our children to a childminder, but that waving goodbye, drying tears becomes a mantle of self reproach.  ‘Was that runny nose a sign of pneumonia?’ ‘Is the bout of loose stools something else?’ and even when we get to our employment we are half expecting a phone call taking us away from that important meeting to collect a sick child.  It means that the career has half of the effort and the child gets the other half.  It feels as if we are being torn down the middle.  The missed Sports Days and Nativity plays, reading time because the report is expected on the CEO’s desk in the morning.  Sleep becomes a luxury.                           The disparity in salaries.  Although things are slowly improving, equality is some distance off.  A man can earn more doing the same job as a woman because he stands up in the lavatory!                                                                                                             When a woman goes to work she will return home to often find the online shopping order is imminent and needs to be put away.  She will find hungry children fractious and tired, the laundry basket is overflowing and the carpet hasn’t been hoovered for days.  These are things that bother a woman, but a man is blasé to it.  So we women work hard to restore order whilst he watches television.

From my point of view the women’s right’s movement was an action happening elsewhere.  It was on the news, in my peripheral and although I was moved by it, it did not reach me at grassroots level.  This was happening in London, it didn’t quite reach Romsey.  I wanted to be galvanised by it, but other things, ie cultural expectations, got in the way.  In my little bit of the world I thought that getting a boyfriend, marriage and children were the right things to do.  I dallied with the idea of a career but that four-lettered word, love, came into my life.  It’s not that my life has been drudgery or discontentment.  Far from it, I have been happily married a long time and I have a wonderful family around me, but there is always going to be that little bit of me that thinks about what I might have had if I had tried.  I love my two daughters, but I never really thought about having children when I was younger.  It’s possible that I might have transferred some of my wishing on them.  I certainly hope that they feel they were encouraged to know they could achieve whatever they wanted in their lives.

I feel the women’s right’s movement at the start was all or nothing in the 70’s, women appeared to be feeling suppressed and voiceless.  When they did begin to demonstrate a need for self-determination, looking back on it now it seemed to gather momentum too vehemently.  It was like ‘we’ (women) had been let out of jail early and we turned our anger on what we perceived to be our jailors (men).  In the process of burning bras and claiming sexual emancipation we didn’t achieve what we should have.  We were too aggressive and we scared the heebie-jeebies out of men.  The assertiveness would come later with true equality being a far greater gain.  My granddaughters might thank us one day.

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It’s coming up roses

Last month, May, was the sunniest, warmest and driest on record, since records began (again). I think I deserve it really after lockdown and putting up with another winter. I want to tell you about my garden.

I’ve always loved roses which is a good thing because the soil in my garden is heavy, it’s clay and roses like that. When we moved here 25 years ago we had the garden landscaped and there is not much plant-wise that still remains from those days. The patio and the pergola is still standing after new supports and nearly all stanchions. A lot of the posts are supported with concrete buttresses but some of it is 25 years old, it supports a wisteria and a honeysuckle, however I decided that the landscaping was a bit boring. So, over the years I’ve changed things a bit. I have planted many roses mostly from bare root and although they’ve taken a while to mature they look delightful this time of year, June is a good month for roses. Yesterday, I deadheaded, well, when I say ‘I’ we all know that I don’t mean ‘I’ did it. I asked one of my PA’s to deadhead my roses and I gave her a tutorial on the correct way to deadhead. I have years of experience from generations of gardeners in my family. I could have been Monty Don or Monty Don with a wheelchair. I think my PA may have felt a little claustrophobic at me looking over her shoulder but, I wasn’t checking up on her, honestly.

I always want to be that woman of a certain age who gets out in the garden with secateurs, sunhat of course, a flowery one, wide-brimmed, taking cuttings and picking off the black fly whilst sipping iced tea, non alcoholic of course. My problem is that I forget the wheelchair. In my dreams I don’t have MS. I’m quite able to be the person that I should have been, in my dreams. I kneel down to take out the old weeds, collecting cut flowers in my Sussex trugg and, because I kept myself fit in that dream I can raise myself from my knees without creaking.

This has always been an issue for me. I had a telephone conversation with my Mum yesterday afternoon and I was explaining to her this woman I would like to be, using my gardening knowledge and enjoying my golden years pottering. She suggested that I wanted to be Mary Berry! I think I can make a Victoria sandwich with homemade jam dusted with icing sugar, but the idea of it is not my reality anymore. Handling hot things and sharp things, let alone reaching for the flour is just not possible. I imagine going for a stroll, just me and my thoughts down a leafy lane, but although I have a wheelchair which moves, my Handlers won’t let me go out on my own presumably because I might have to cross a road or come up against a pothole that I can’t manoeuvre ’round.

Perhaps I’m safer in the garden. I love the colours and I know the names of almost all of my roses, I feel like they are my children. I’ve become that person who will comment on the lack of bees in the garden this year or the acidity of the soil, or the effect of the sun and how it dries the grass. I know the right time of the day to water the garden and believe me these aren’t things I’m old enough to know, or so I thought.

MS has given me a lot of negatives, that’s for sure, but if I hadn’t been disabled I’d be working. The pressures would be on for me to achieve so many things that it is accepted I cannot do. So, I have time to smell the roses.

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