Left To My Own Devices

My shopping is out of control.  I don’t know how it got like this, it could be boredom, it might be bloody mindedness, or I could just put it down to MS!

I’ve always been a bit of a shopaholic, in my teenaged years I would spend a month’s salary in the first week and get by on fresh air for three weeks until the next one.  But it has got a lot worse in latter years.  My house is bulging, my fridge breathes a sigh of relief when I remove an item from it and frankly, you don’t want to know about the chocolate!

There have been concerted efforts from my PA’s to take control and probably would help them, because they’re the ones who put it all away. When a Sainsburys delivery arrives they have to find more hiding places and they are getting a little short with me.  Their plan is to tell me exactly what is needed and make a list, even tell Alexa what is needed and I then can shop.  This doesn’t work.  Why doesn’t it work? I have a theory about this, Andy likes to watch a football match on a Sunday afternoon and, because I don’t, I sit with a laptop inviting me, tempting me, daring me to shop and you cannot put parental locks on shopping websites and even though my carers leave me thinking that I have only spent £40.27, in order to get free delivery, by the time it comes on Monday it’s up to £66.72. None of this is my fault! I swear many chocolate and crisp manufacturers put something in their items that makes them addictive, I don’t need the shunning from the public, I need to be accepted for who I am, I need help not control, I don’t work well with control.   Another day has passed and guess what? The important thing is the one thing I forgot to put in the basket, the important thing? Washing up liquid to remove all the chocolate from the plates.

 

 

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‘I’ll Be There For You……’

I am sitting on Monica Geller’s sofa, I’ve got my girls beside me and I can’t quite believe I’m here.  My three readers of this blog might think this is a bit silly, but I’m enjoying an apartment tour at FriendsFest.  It’s a sunny Sunday afternoon in Preston Park, Brighton.  I’ve been a ‘Friends’ fan forever.  I’ve watched every episode many times, my favourite character is Joey, Matt LeBlanc, why wouldn’t he be my favourite character? What’s not to like?

There is a whole community of us out there aged 14 – 60, it’s like Marmite; you either love it or you hate it.  Those who hate it have no soul!

“WE WERE ON A BREAK!!!!!”, “How are you doin’?” We know all the quotes, all the kisses, we know ‘Smelly Cat’, I spend my life living around the events and happenings in ‘Friends’ and relating them to my own life.  I would have loved to be Rachel – that hair! The style ‘The Rachel cut’ we all wanted it. We would have loved to be Rachel, but I’m quite sure my control issues make me more of a ‘Monica’.

There is one thing that I think ‘Friends’ has missed out on.  I accept it was made over 20 years ago and disability awareness is not what it is now, however, there was never a sign of a disabled character in any of the many episodes.  I would have a good Rachel in ‘Friends’, a disabled woman with her own independence.

I found myself feeling slightly envious of the lifestyles of the characters; Rachel had that lovely job in Bloomingdales; they were all able to sit around in ‘Central Perk’ drinking delicious cappuccinos and macchiatos.  They lived in beautiful apartments – across the corridor from one another (except for Phoebe and Ross), which meant they were able to drop in on each other whenever a crisis or a drama occurred.  But that’s not real life.  Here I am watching episodes when I’m bringing up two small children and desirous of their lives.  But, let’s look at my life now.  Two beautiful daughters, four amazing grandchildren,  I have my writing, I have my health, I have a great support network with family and I go to concerts and festivals.  I am not wealthy but I have enough to enjoy life and feel fulfilled.  I have plans for the future: a cruise with all of my family, I have an idea to visit Nashville, Tennessee.  AND I WILL HAVE THAT BOOK WRITTEN!  Life is good, I wonder if it would be that good for the characters in ‘Friends’.

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The Price of Dignity

MS is a crappy disease, literally. When I was a child, I would notice little adverts on the back of the paper, telling me about the charity for MS and I would read about this crippling disease, which caused double incontinence and complete misery.  I never thought I would have it.  Fast forward fifty years and I am in it, living it every day.  It happens just like the adverts said and I’m incontinent.  My bladder and my bowels don’t work.  I have a catheter, which helps me control my urine function and I use an anal irrigation system every day to control my bowels.  I have recently been told that this @peristeensystem, which is apparently, according to the suppliers, @coloplast, is supposed to last three months.  They need to be in my shoes for a mile! In an ideal world it would last twelve weeks, but this world is not ideal.  We are all different, each of us has our own ‘rhythms’ and @coloplast’s policy does not accommodate my own ‘rhythm’.

I have raised this issue with my general practitioner, who has advised me that perhaps I need to buy extra systems in order to meet my requirements, but when I said that I needed extra systems to take away with me, in case anything was broken, or when I travel, he looked at me, askance and asked, “How often do you go away?” which isn’t actually any of their business and seemed genuinely surprised that an MS warrior would dare to go ‘away’.  Whilst I could indeed purchase these items, why the hell should I?

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CarFest Action

The annual Dixon pilgrimage to CarFest has been and gone.  CarFest was the brainchild of a famous Radio 2 presenter in 2012. He devised a way of showing off his extensive car collection along with all his celebrity petrolhead friends.  He patronises Children in Need, as did his predecessor, and the event raises a considerable amount of money each year for the charity. There are two CarFest’s annually, one in the North which is held somewhere in Cheshire and CarFest South which is held near to Basingstoke on a farm owned by a retired Formula1 driver.  The site of CarFest is huge, welcoming tents and caravans and motor homes, all spread across 2,000 acres which are usually inhabited by water buffalo.  

We set off on Friday morning, with the rest of the country, at the start of another Bank Holiday exodus.  Husband-in-a-hurry began the journey with the best of intentions to not get stressed over traffic.  That didn’t last long!  Although we have done this every year since 2012 the journey doesn’t get any easier or more pleasant.  Narrow country lanes and motorway jams just aren’t conducive to happy travel. Nevertheless, we got there after the usual blue smoke from his ears and a lot of sighing from me.  My daughter and two Grandchildren live close by and it’s always good to see them as they attend CarFest as well.  

Husband-in-a-hurry has a different agenda to me for the whole weekend.  He enjoys the cars much more than I do. The site has a racing track laid out and hay bales surround it ready for any over enthusiastic drivers.  There’s a lot of testosterone on show as drivers burn rubber with wheel spins and the air is filled with an acrid smell as plumes of smoke disperse over the crowd of observers.  If I’m honest the real reason I want to go is to see Nicki and my Grandchildren.  I always end up spending too much money on them and fill them with sugary confection which is a trial to him and not pleasing to Nicki.  I want to explore the tents and stalls full of good sweet treats with the children as they always need a sugar fix.  I have come home half a stone heavier but it’s offset by my purse which is considerably lighter. 

 Since the inception of this festival the cars have become slightly less of the big attraction and more of a side show to the music acts, which are very Radio 2 and food lots of food, celebrity chefs and cooking demonstrations.  The whole experience is now a Top Gear/GoodFood show/mini Glastonbury.

I find myself wishing and wanting to know more about the technicalities of the whole shebang.  I want to know how the locals, in this quiet, leafy Hampshire village feel, when CarFest descends on them.  Does Chris Evans offer them free tickets? Do the residents lock up their doors for the whole 3 days having stocked up on food from Ocado?  How do all of the local trades and producers get onto the site? What happens to the livestock for the duration of the festival? Where are they? Do they go on holiday? How far ahead do the cattle get moved out to ensure that the multitude don’t find ‘something nasty’ underfoot? You can only begin to imagine the terrain in a cattle field or in my case beneath my wheels!  How far ahead do they plan this massive logistical under taking? I also dream of meeting Jodi Scheckter and asking him for a cheeky third of an acre so I can build my bungalow here in Hampshire where I’m supposed to be.  

After getting rained on a couple of times, which can only be expected on an August Bank Holiday weekend we come home, Husband-in-a-hurry assuring me we will never do that again, and me thinking next years tickets go on sale in November……….

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Job Satisfaction

Today a new personal assistant started working for me. You won’t believe the problems of replacing a PA. Advertising is quite clear – I specify hours and pay rate and the only requirements that I have are that it has to be somebody female and a non-smoker. I think that the problems stem from the fact that the caring industry as a whole is not recognised as a profession. There is no career progression within caring, and there is no pay increment. Considering that the industry as a whole is so large within this country, and remembering that we have an ageing population, with a greater demand on the body as a whole, I believe that the whole system needs a complete makeover. If we placed the importance and recognised that without it, so many people would be so abandoned, we might begin to realise the potential within caring. There is no training, and many of the people who apply for a job with me are coming from outside of the industry. In the past, I have had some really great PAs who I don’t want to lose, and some who I am happy to say goodbye to. I can’t keep the same PAs with me unless I can make the job satisfying. I would say that the rate that I pay is not sufficient, and I want to offer an inflation rated pay rise every year, but because the budget that I am given faces a cut each year, I am just not able to afford it. Keeping the disabled and elderly in their own homes has to be of benefit to everyone, and should I be taken into care or a home, it would be hugely more expensive to keep me there than to pay a decent amount of money for me to stay at home. Some care homes cost as much as £1500 a week. I receive £250 a week to provide my own care, that’s just absurd. It is presumed that caring for someone as a job is sometimes described as just ‘wiping people’s noses’ for a living. There is nothing in that that is recognised as a ‘proper job’. However, Andy can go to work for a call centre and it’s seen to be legitimate. Somebody needs to do something before the whole system completely collapses.

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I Have A Dream

I used to live in a bungalow.  It was a lovely bungalow, south facing, huge living room, 12′ patio windows and 3 bedrooms.  The only problem was there was only one bathroom and my bedroom was the other end of the bungalow.  With developing MS and continence issues becoming more urgent, one bathroom was never enough.  So we moved to a house, well, two, to be accurate and now I long to be able to access all areas.

Occupational Therapy assessments are trying to help but I’m still left with a set of stairs and a stair lift which only Andy can lift me on to and off.  We have considered all lifestyle changes, major and minor, however, at the end of the day and for both our comfort and safety, a bungalow is the only realistic option.  Finding the right bungalow is proving to be a challenge, we have to have widened doors, no ninety degree turns in hallways, large enough rooms to wreck with my electric wheelchair.

The obvious solution to me is to write my own not to design my own, I already have that dream! It has improved over the years and I feel that now is the time to bring it to fruition.

Let me tell you about this bungalow.

It is strangely a two story property, the ground floor consists of garages, a utility / laundry room and room for all the ‘gubbins’ that you do not want cluttering up your living areas; radiators: as it is going to have underfloor heating; boilers and water tanks. A wine cellar is de rigeur and I might put a ‘man cave’ down there.  The bungalow is timber framed and has a flight of steps from ground floor to first floor.  A verandah surrounds the first floor, so that I can search the sun any time of the day.  The interior includes three double bedrooms; two with en suite and the master with a wet room, each bedroom opens out on to the verandah via picture windows and they are the only rooms which have doors.  The living is all open plan; a kitchen leads to dining which in turn leads to the sofas.  All hard floors throughout, possibly parquet.  I can hear you asking: “how are you going to get on to a first floor bungalow?” A person lift leads from the garage up to my bedroom, so I can roll from the car, directly into the lift and upstairs.  There is a flight of interior back stairs which lead from the laundry room lead into the kitchen.

The only problem I have with this project is funding: until my debut novel is published I don’t have any money.  I can’t afford to buy a plot of land, with or without the statutory planning permission.  I have no money for architects and construction. I’m not going to sell my soul to the devil just to pay for it. So, this is going to remain just a dream but without dreams nothing happens in life, does it?

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Making and playing

I went to Basingstoke on Sunday for my eldest grandson, Finn’s, birthday.  I love all my grandchildren to bits and its when I see them that I become more aware of my own inadequacies due to MS. This was a family party including two sets of grandparents and an uncle.  Finn is nine and he received a new cricket bat from his parents.  He was eager to try it out and it was assumed that I couldn’t contribute to a cricket match and would ‘stay at home’. This happens to me a lot: “We can’t take a wheelchair over to the field”, or “Will you be alright here?” I stayed and my daughter, Nicki, cleared the remnants of our meal away. My granddaughter, Lexi, was keen to create a castle from an old box she had.  She wanted to get on with it, but unfortunately I couldn’t get down on the floor to help her.  I used the little initiative I had and distracted her for a while by asking her to design a plan on a piece of paper.  I suppose this occupied her for a while and then her other grandma returned after a rousing cricket match and took over.  She knew where to find the ‘making and doing’ bag and the castle started to take shape.  Empty plastic bottles became turrets and Amazon packaging created rooms within the castle ‘box’.

I didn’t want to feel jealous but I admit I did.

There aren’t many times that I wish I was able-bodied, I accept MS with resilience and everyone around me knows me the way I am.  I try the very best I can not to feel sorry for myself but it is when I can’t be a ‘proper’ Nonna to my grandchildren that I realise my restrictions.

Luckily, all of the grandchildren seem to love me the way I am.

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It’s Raining, again

It was blue sky when we left the house.  We closed the front door, set the burglar alarm and we were off.  I just needed to pick up a few things, from Waitrose obviously, and it was warm and we had a really lovely walk.  I knew I didn’t have loads of time as my PA is only employed until 1pm and she had a lunch date, so we didn’t meander.  I picked up some football cards for my grandson and went into the supermarket.  It was dinner for Andy and a few nice things for me, as you do.  Whilst we were out shopping my PA suggested she could look in Poundland for something she needed and asked if it was alright with me.  They always check that I don’t mind them picking up items for themselves when they are escorting me on a trip out and of course I don’t mind.  We found a few extra things in Poundland and spent possibly a bit longer than we should have, but it is Poundland.  It looked a bit grey when we went in but nothing to worry about.  When we came out of the shop the heat hit us like that feeling when you open an oven door when you’ve been cooking a long slow lamb shank.  There was a fine rain but we didn’t feel it was anything to worry about.

How wrong were we?

As we were walking in the rain it came down harder and harder, I asked my PA if she had grown up hearing the advice: ‘you never shelter under a tree in a thunderstorm because it might get struck by lighting’.  We both had and we wondered if this had ever happened.  We were grateful for a tree when the deluge came.  It was incredible that we could see the rain approaching us and we were clearly going to get wet on the way home.  We couldn’t stay under the tree as we didn’t know how long it would last so we just went for it.  As a wheelchair user, even though my chair goes quite fast, the rain hits me on every part of my body.  An able bodied person will still get wet but mostly because they are travelling through the rain, whereas sitting in my chair, rain collects on me because it has no where else to go, that’s how it works.  So even though it was one o’clock when I got home, I was drenched and I mean drenched! Every bit of me was soaked through, I was like a drowned rat and my PA had to miss her lunch date as I had to be completely undressed, dried and redressed in clean, dry clothes as the rain was filthy.

The sun has now come out.

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Let The Sunshine In

We need to bottle this up, just the blue sky, the green trees, the roses, all of this because when it’s a grey dreary day I’m cold and depressed, I am a miserable wretch of a woman and I need to open one of those bottles. Vitamin D is all very well, but it doesn’t work the same way as a sunny day.  Researchers say they have shown that MS Warriors might benefit from the vitamin but there’s nothing like the sun.  As a wheelchair user I appreciate the small things in life, the sound of my wood chimes; the breeze in the trees; the scent of the roses as I pass under the pergola, these enrich my soul.

Now that I have my new chair, it is changing my life. I would never have thought that something could make so much of a difference, giving me the independence to take myself outside and breathe fresh air and, even go shopping on my own! My senior  daughter said as much when she saw me in my new chair for the first time: “How lovely it is to see you out of the kitchen!”  Sitting up straight again is making me more assertive. I am taking steps to move forward and not stay in my submissive ‘disabled’ role.  I have to tell you, Reader, I never used to be like this.  MS has made me reliant and I allowed this to happen.  My independence dwindled away because I accepted that this was the way it should be, I didn’t get a job because I’d been told: “You can’t do that, you won’t be able to cope” but I wouldn’t have known that unless I tried and I wasn’t allowed to try.  I have been told that I cannot drive anymore because ‘I am not safe’, but I haven’t had an accident in my life.  I haven’t pushed probably because I’m a Libran; a people pleaser and I accepted and didn’t challenge those boundaries

I think we have to feel that we have a role in life.  We need to feel our existence is justified, we cannot just sit (in our wheelchairs) and acquiesce.  I’m trying to find my role, it might be writing, I hope it is, but I need to be encouraged in my search not to be told ‘You can’t do that’.  I need to be valued in spite of MS, don’t write me off just yet!

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Some Thoughts from A Broad…

You may have realised by now that I am an independent person who is dependent on others, I love my life even with a wheelchair.  But the quality of life is forever encountering obstacles in the most mundane of places.  Has anyone ever thought about how I get into a dental chair? I am required to be lifted into that chair from my wheelchair and that’s fine while my dentist is 6’3″ and an ex Rugby player, but what do I do when he retires?

I love having my hair done at a salon, a very well known chain of salons, even though friends and colleagues suggest that it might be easier for me to have a mobile hairdresser to my home.  However, I don’t get offered cappuccinos or prosecco at home, so why would I?

I adore the girls who look after my locks and help me feel and look gorgeous, but I don’t want any of them getting injured on my account.  It’s when we get to the back-wash that things get hairy.  I have to be lifted from my wheelchair to the seating in front of the back-wash basin.  This situation is remedied by having my husband in attendance, however I don’t want him there; I don’t want him knowing how much this luxury is costing me.  I can’t let the staff at Toni & Guy lift me as they might get hurt.  It would be classed as a work-place injury and can you imagine the furore caused if I, as a wheelchair user, was turned away due to disability? My money is just as good as anyone else’s, but I’m a frumpy, sixty year old woman in a wheelchair and I feel as if I don’t fit in.

After a recent refurbishment at the salon, I had expected a nod towards disability awareness in these so-called inclusive times, but it was not to be.  Can you imagine the unique selling point if they had that? Just one chair which could be moved to accommodate a wheelchair user? By leaving my electric wheelchair at home so that my smaller one can be used I make a compromise, why can’t they compromise with me and all the other wheelchair users? Do I make the establishment look untidy? Does my physical presence offend and detract from the demographic the salon is aimed at?

If I go on a cruise I am escorted from beginning to end, likewise when I go on a plane there are staff who assist and are trained too.  Why is it so difficult in my workaday life?  Why isn’t this the same? Why isn’t this just the norm?

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