Bad Habits

The sun is shining, I’m sitting on the balcony of a stateroom, whilst cruising to the Azores. We are through the Bay Biscay, past all the choppy waters and I have a cocktail in my hand, it doesn’t get better than this. What’s my face doing? Surely, it should be smiling, why isn’t it?

I’ve got out of the habit. Smiling is a habit, it’s a good one to have. It takes a completely different set of facial muscles to smile than it does to look glum. Smiling is an exercise, but it’s also a habit and I should do it more often; it’s good for me.

Habits are easy to attain. Apparently it takes 26 days to get into one. Bad habits like nail biting, eating the wrong things, smoking, drinking, spending money are all bad, and I would put into that how easy it is to get into a ‘feeling sorry for myself’ frame of mind. Good habits have to be worked on. Habits like exercise, eating properly, drinking enough water and keeping in touch with friends are easily lost and i include my smiling in one of those.

I’m here on this ship and I want to socialise with other cruisers, but they won’t want to converse with me if I have a miserable demeanour. I need to practise the art of smiling.

I was always a good conversationalist and great at mixing with people. Being without a homemaker is all very well but it means that there’s no one else in the home with you, there’s no one around to talk to. I don’t want to use my disability as an excuse but it’s harder for me to get out and meet people. I shop online because it’s easier than the technicalities of getting out, I don’t want to do all my shopping this way, groceries, clothes, Christmas presents, etc, could be so much more fun for me out and about, but I have to close the front door on my own. I need someone to drive me to any decent clothes shops, and that involves paying someone. Getting a taxi anywhere requires an accessible one, booking and planning, which I’m not known for and is also prohibitively expensive! I have always been fiercely independent and I feel that I’m losing it bit by bit. That’s why I don’t smile much.

Don’t feel too sorry for me, I’m on a cruise! If you meet me, remember that I can smile…I’ve just got out of the habit.

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Do I Ever Learn?

There is an old adage that says we learn by our mistakes, but I’m not so sure.

Should we be left to learn from the mistakes that we make, or should our older and more learned, well-meaning peers take control of our lives and save us from making any slip ups in life?

I have gone through my years trying to learn but always failing. At the age of 13 I repeatedly made the same error whilst writing, creatively or in essays. I would often place ‘of’ after ‘could’ or ‘would’ or ‘should’ instead of ‘have’. My English teacher, Mr Rich, gave me 100 lines to try and correct me. I don’t know how anybody else would write out their lines, but I counted the number of horizontal rows and wrote each word in columns until I reached 100. Each one of those 100 were, I discovered the next day, actually incorrect. I came home that evening with 500 lines and have never repeated it since.

Last week, I took my wheelchair for a walk into town. If I take a shortcut and avoid the main road, which I am told is a ‘twitten’in Sussex; it is a hazard at this particular time of year because of fallen blackberries. They drop off branches and get squished on the pavement. Anyone on feet instead of tyres will notice blackberry pips and juice on the bottom of their shoes. Because I cannot see what my tyres collect en route, I bring the detritus into my house and onto my cream carpet. NB: New Followers need to read my previous posts in order to fully appreciate the challenges of entering and exiting my abode. Therefore, it’s very difficult for me to see what is behind me or possibly on the carpet.
As I cannot perform a 90 degree turn at my front door, due to a new front door, which was replaced as a result of the damage that I had inflicted upon it previously. I need to travel straight in over said carpet, make a spin and after closing the front door, wheel into the kitchen. It wasn’t until I thought I might like to watch a bit of cricket on TV that I saw what I had done. I tried, goodness knows I tried, to remove the stains and the pips from the carpet, firstly with the vacuum cleaner. However, each time I moved it appeared there was more to deal with and a vacuum cleaner is unyielding when in a wheelchair. What I didn’t know and couldn’t see was that the blackberries were caught in the tread of my tyres and were dropping more devastation as I went. I needed help! I text Daughter No.2 and asked her if she would mind just popping in to aid me. She came and used her special rescue cleaning which involved bleach. Not a good idea on a wool carpet!

Next day my carpet man, Steve, who is known as My Saviour, told me to replace my carpet with wood floors. He has also told me frequently, to only use water when cleaning my carpet.

In this episode, my mistakes were plentiful, firstly, I knew there were squashed up blackberries along the twitten. I should have checked my tyres before entering my home. Secondly, thinking that I could cleanup on my own is foolhardy and I should know better. I also know that I should never put bleach on the carpet when I have been told not to!

So, do I learn by my own mistakes? I’ll leave you to make your own judgement.

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What shall I take on Holiday?

In the halcyon days before MS all I needed to pack for a holiday was my passport, ticket and money. OK,  I’m older now, not wiser but the luggage has got heavier and the allowance is lighter.  BMS (before MS) it was so easy, I must confess that sun cream wasn’t on my radar and worrying about getting bitten by large flies didn’t occur to me. AMS (after MS) small things like that have become larger. I am quite conscious that if I get bitten I might develop an ulcer on my leg or wherever it bit me. So we need a robust First Aid kit! My digestion is affected by paracetamol, but ‘Husband In A Hurry’s’ blood pressure can’t tolerate Nurofen (a UK brand of Ibuprofen) so we have to take both just in case of hangovers or dehydration, both of which are common on cruises. My MS has developed into quite high maintenance now. I need a lot of stuff, pain killers for trigeminal neuralgia, blood thinners and statins because they ‘might’show some stability in secondary progressive MS. A catheter; just in case, a complete new anal irrigation system; just in case and extra clothing; just in case. As you can see, my case is quite heavy!
I pack extra of almost everything, I have a tendency to spill things down me, I knock things over and I bump into things a lot. So I need spare tee-shirts and surplus trousers. On cruises we change for evenings, which means Day Wear and Posh Stuff.

As I start packing, five weeks before we go, my MS brain means that I’ve forgotten what I’ve put in my case and requires me to unpack and repack on a fairly frequent basis. I rely on PAs to help me, but even though they are great I don’t trust them like I would myself and as a result I’m sure I take too much in the way of clothing.
I always think that I might need three jumpers even though we are going to the Azores, which are supposed to be warm, but you just never know. Despite there being three thousand passengers onboard I feel that I need to wear a different outfit every evening, no one will ever see me twice on this adventure!

The most important things however, are not my clothes. The cruise will not be a disaster if I need to have clothes cleaned it will, however, if my super-pubic catheter becomes dislodged or damaged.

Who knew that my life would ever become so dependent on hoists, commodes, ramps and ‘disabled accessible’ cabins. MS is an invisible disease, people see the wheelchair, but they don’t see the pads I have to wear and they aren’t witness to my personal care and I don’t just mean getting dressed. I never expected to be hoisted out of bed in the mornings, but despite all of this I will never lose my self esteem or stop cruising!

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Shopaholic, me?

I’ve always loved shopping, I had my first weekend job when I was 14 and the thrill of having money to spend has been with me ever since. I’m very eclectic in what I buy, it’s not always clothes or shoes or handbags. I can get just as much pleasure from buying groceries. Strange, or peculiar to think that I can get just as much enjoyment from a bag of pasta than I can from a new charm for my Pandora bracelet.

Is this an MS thing, my obsession, or is it deeper?

I had my hair cut and coloured yesterday. It wasn’t cheap, but when I came out of the salon I thought it was money well spent. I came home and I should have been quite happy to watch some cricket on TV. For some reason, known only to me, I turned on my computer, I clicked on Waitrose Groceries and spent £60, minimum order, on food that I did not need. When it arrived this morning, my PA was instructed to find more room in my already bursting cupboards. If I had saved that £60 I would have more to put towards the next haircut or a new handbag.

I need someone to stop me from spending money. They have tried. My youngest daughter has offered to help me once a week in order to decrease my extravagance, my PA’s have come up with ingenious ways to help, such as; sitting with me or looking around the kitchen and utility to let me know what we’re running short of. One of them has suggested meal planning for a whole week and another has given me a magnetic shopping list pad, which is attached to the front of my fridge. All of these are incredibly helpful and should curtail my profligacy, however, I rebel as I feel I’m losing more of my independence if I stick to their plan, well intentioned as it is and I end up ordering more. When the delivery comes and they put it away they always want to know why there is more chocolate again. Cadbury’s are making a ridiculous amount of money out of me!

I need to ask myself, or a therapist why I feel compelled to shop. Do I feel that my autonomy is compromised? How far back does this date, my need for a thrill? This is a compulsion or even an addiction, but I’m not sure where the answer lies. I could spend more money examining what issues might be hidden under the surface of my life, but I can think of better things to do with it!

I understand that there is a website called ‘Go Fund Me’ which might help me to finance my dependency but I feel that might be taking things just a bit too far. Instead, I will be linking my blog to Amazon, which might make the odd recommendation to which you might click on or even purchase and generate a little revenue for me. If anyone wants to understand some of my habit a good link is ‘The Secret Dream world of a shopaholic’ by Sophie Kinsella.

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Easy like Saturday morning!

Saturday morning, waking up late to a cup of tea in bed.  The birds are singing outside, and the radio is playing relaxing songs, the smell of bacon frying is wafting up the stairs. Life is easy and summer is still in the air.

 

Now, this is my real Saturday morning.  Legs thundering up the stairs and a whoosh of air as the door flies open and I’m woken by Husband-in-a-hurry exclaiming in horror that the football starts at 12.30 not 3pm and it’s a two-hour drive away!

 

The panic is now in full force.  I am hoisted form the bed with no dignity whatsoever and accelerated into the bathroom for what is jokingly described as a shower but is really a lick and a promise of something better tomorrow.  There’s no time for a hair wash and with the same acceleration I’m returned to the bedroom and hoisted onto the bed.  The hoist doesn’t move fast enough this morning.  He might not get to the start of the game; we’re not panicking much.

I’m given no choice about which trousers come out of the wardrobe and they are flung on I’m surprised they’re not backwards.  Then I have to be lifted again into a chair.  He struggles with bras on a good day so you can guess how well supported I am this morning.  I dispatch him downstairs to organise himself and eat breakfast, has he got time?

I drink a cup of lemon tea and try to breath.  Then quick as a flash he’s back upstairs and without any clothes I’m whisked downstairs. As I descend on a stairlift I notice the front door is wide open, luckily the postman is always late.

 

Yes, I know I’m fairly high maintenance. I need some attention on my feet, I like to have my hair brushed and I like to brush my teeth.  Not today. My feet aren’t allowed socks let alone any moisturiser and I can keep bed hair all day, well don’t worry no-one is going to see me and I’ll be back in bed in 13 hours.

 

There’s a knock at the front door which has now been closed to accommodate yet another hoist and my PA is greeted with the same panic and squeezes through a small aperture to find me at the bottom of the stairs, bra and vest askew.  With a horrified and worried, ‘Is everything ok?’ she is bought up to speed on the situation.  Because she is aware of the importance of football in my house, she takes control of husband-in-a-hurry and tells him to worry about himself and we’ll be fine from here.

 

It takes me and my PA a good hour to return the house to its normal state. The abandoned towels, lids missing from his toothpaste and deodorant and hoists blocking the hall. We breathe a sigh of relief however, the rest of the morning felt out of kilter.

 

I’ll be checking the times of kick-off for him in future……

 

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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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