I'M Still me…..

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……

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.

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.