Five-Alive

Daily Prompt: Five a Day
You’ve being exiled to a private island, and your captors will only supply you with five foods. What do you pick?

I guess not much of what I am currently surviving on could be supplied on an island. Soup mix, bread rolls, baking potatoes, and pasta. For a start I would need a sauce to go with the pasta and at least a couple of ingredients to go into it. That means, pasta is out. Baking potatoes might be okay as I could cook them on a fire, if I knew how to build one. Bread rolls would deteriorate in the heat too. Ready prepared soup mix is a supermarket thing so that’s out too.

The only food I have so far are baking potatoes. Sqaush, perhaps, for roasting. Bananas, as I reckon I would miss them. Two more.  Beans of some kind as they are filling so I could eke out the supply, and flour to make some kind of basic bread, assuming I had some water. Well I think my list is complete. Which foods would be on your list?

Would I make a good boy?

Yesterday’s Daily Post went like this:

Have you ever wondered what it would be like to be a member of the opposite sex for a day? What do you think life would be like?

I do sometimes wonder about this. Might I be more laid-back and able to take things in my stride if I were a guy? Mind you, from the outside looking in, some guy friends seem to worry as much as I do. I’d like to eat whatever I wanted without putting on weight. Not to waste the day in eating non-stop, but I would love eat without having to ration my food so much.

I think l would play some sport, especially if I were able-bodied for the day too. I’d love to know what it feels like to truly play without the fear of falling over. To run fluidly  without stumbling. Heck I’d just love to know what it feels like to run properly, never mind anything else!.

I would also sometimes love to know how guys think. It is hard to know how to put this into words. There as so few guys my age in church I would love to know what a guy things of all that.

I can’t think of anything else off the top of my head, but it’s still the running thing that sticks out for me. One day though, I will know what it feels like to run as a girl, with as much freedom from pain and spasticity as I could wish.  Mostly, I just love being a girlie girl!

This could only happen to me!

or those of you who regularly follow this blog, this story may not surprise you. I’ve been in some scrapes in my time, some of which I have recorded here.  A good friend encouraged me to write about the latest one in the middle of this week. All of us have done silly things at one time or another, and this is mine…

Wednesday evening just gone, I was zipping round my living room in my wheelchair collecting things I needed overnight or first thing in the morning, including my mobile phone, kindle, and medicine box affectionately known as ‘the UFO’ as it does rather look like one! This being done, the last thing I had to do was to put my dressing-gown on. Simple enough, you might think. I stood in front of my wheelchair for when I was likely to get sick of standing and got the first arm into my gown. Next thing I knew, my dressing gown was being sucked under my wheelchair wheels, and my wheelchair was bashing my good leg. I didn’t realise then but my dressing gown cord had wrapped itself around the wheelchair control. I began praying feverishly for a way to get the chair away. I reached back, hoping to find the ‘off’ switch on the wheelchair, but instead I grabbed the golf ball toggle on my chair and forced it away from me.  At some point about then, I realised with horror that the tie on my dressing gown was wrapped around the golf ball on my wheelchair. The wheelchair careered into the shoe-rack; the wheels continuing to spin at a ferocious rate. I didn’t realise at this point that I was hurt. I somehow made it over to my wheelchair. I made the mistake of trying to move the chair backwards by moving the toggle. All I did was make the carpet burn, and the hole in the linoleum worse, though I didn’t realise this at the time. Smelling burning, I dived for the off-switch on my chair and started trying to move the chair out of the doorway. How I thought I would manage that…! I collapsed back on my bed, defeated. As I begun frantically texting the friend who was staying on the sofa bed that night, she pressed the buzzer to be let into the flat.

I told the story breathlessly and almost shaking with shock. I watched my friend thinking about what to do next, and then all of a sudden she had clambered over the wheelchair so she was with me on my side of the room. Moving an ankle boot from under the chair wheel, she managed to wrench the chair free with help from the strong bar on the back of the chair. Mission accomplished.

My friend began to survey the scene, jabbing her foot at something on the floor. It was then that we relialised I had torn the linoleum. Fortunately, that was easily sorted with duct tape. Next we did the only thing to do in those situations – put the kettle on!! While Emma made the tea, I began to take stock of what had happened, deciding not to clean the carpet where the night bag had split. I started at it, unable to contemplate doing anything about it and knowing I was in too much pain to be able to kneel down and clean the carpet. The tea helped soothe me a little. I went off to my room fairly quickly after that, still not really able to believe what happened, and eventually slept.

The rest helped my leg, but the last couple of days have been tough, trying to get my right leg to take my weight instead of my left. My emergency-only zimmerframe has been indispensable. I’ve been both napping and full-on sleeping much more than usual. Lazily sliding my feet across the floor, or performing inelegant pirouettes to transfer from, say, bed, to chair is much easier than the usual semi-walking thing as my leg just can’t cope. Here’s hoping it improves in time or I will have to be off to my nearest accident and emergency department.

 

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As if the above were not enough excitement, this afternoon between me and my carer we decided we would attempt to make it through the remains of the snow to the local supermarket. However, neither of us realised how thick the snow still is up here. I got so far before I got stuck, sideways, almost totally tipping the chair. Off went the carer to get my zimmerframe while she reversed my wheelchair backwards out of the worst of it. However, once she began trying to get my chair to trace its steps, it became hopeless again. Off went the carer for the snow shovel, returning triumphantly, and merrily hacking away at the compacted ice. Again and again, we tried to move my chair but to no avail. A teenage boy stared at us for a while and then walked on by, just as an older gentleman drove past us. Eventually, a neighbour stopped to offer help, pushing my chair from the metal bar on the back. Success! I am now sat here writing while the carer goes off to the local supermarket. I hope both stories made you laugh at least in part! We all have freak accidents, whatever we drive. And, we all do daft things!

Carer is back now so I’m off to have a mug of tea and work on my post for Bigbible. Here’s hoping for a quiet incident free evening!

Ever-lasting Joy

Today’s ‘Daily’ Prompt’ is as follows:

We cry for lots of reasons: sadness, pain, fear . . . and happiness. When was the last time you shed tears of joy?

The short answer to this question is that I have no idea, at all. I hardly ever cry in joy, just because I don’t think of myself as a ‘crier’. I didn’t cry at my friend’s wedding recently. or even my brother’s wedding last year. My heart was soaring with happiness that they had both found lifelong partners they adore, but it does not move me to tears.

It will sound daft, but I’ve had some tweets recently that have caused me to feel thankful, even grateful,as these things were evidence the Lord is using my writing to bring Glory to Himself, which beings me deep down joy. To my mind, this kind of quiet joyfulness is somehow steadier and sweeter. Not a passing moment of joy but a deep down lasting happiness, that pervades everything. The kind of happiness that a relationship with Jesus brings. Knowing I don’t have to face everything alone. Times when I do silly things like have freak accidents with wheelchairs, I can be thankful, even joyful that it was not worse. It also enables me to see the funny side of very tough situations, like the front wheel of my electric wheelchair ending up in the shoe rack (don’t ask!! I don’t know either). This kind of quiet joyfulness is cultivated one day at a time as I learn to trust God that He can see the bigger picture, and can do more than I could ask or imagine. One day, I will know the greatest joy, ‘perfect peace, earthly pain finally will cease’ say the words from Tim Hughes version of “Happy Day”. I can be joyful because I can trust that God that this is true, one day I will be in Heaven with Jesus and I will know lasting joy. Until then, I will continue to try to find laughter in the mundane and happiness in the lasting things, and joy as I wheel beside Jesus on the path he has set before me.

the score book tells its own story…

What activity, task, or game most brings out your competitive streak?

This one’s a ‘no-brainer!’ It has to be word games in general and Scrabble in particular. I am always desperate to win, even against friends.  My competitive streak is well known among my friends. Quite a few of them love board games too. I sometimes even play Scrabble with a carer on days where it is horrible weather, if most of the chores are done.

I play word games on-line, though not that many these days. I came across a troll when I played ‘Scrabble’ via Facebook login, and immediately deleted the game, too afraid to play again. When I got a smartphone, I started playing games on that, but I’ve had a couple of issues.   The ‘words with friends’ app has malfunctioned, so that when I click on the links no games will load. I started playing ‘Draw Something’ on my phone and eventually got propositioned by the random I was playing the game with. So having learned a little from the Scrabble incident I decided ‘uninstall’ was the best option..

Looking for another game to play, found ‘Scramble with Friends’, a variation on ‘Boggle’. I am logged into the game via facebbok, but none of my friends play it regularly so I play it with randoms, and a couple of people even regularly invite me to play a game. I did have some light trouble, but having truly leaned my lesson, I just resigned from the game. Happily, I have played many games since with no further trouble.

I have lots of memories of playing board games, particularly scrabble, with my Gran when on holiay in Inverness and also when I have stayed with her at her home. My Grandparents also love games – so much so they play ‘Scrabble’ every Saturday night, and others on a Friday night with a friend. ‘Lexicon’, ‘upwords’ and more.

The special thing about all of this us that one of them has a scorebook dating back 30 years and more, to when my Father’s youngest brother was a boy. Friends, neighbours; many of whom have since passed away. The notebook wouldn’t mean a thing in monetary terms, but the sentimental value of such a thing – I bet you couldn’t put a price on it. That’s the thing about games, and board games in particular – they can cross the generations,and get everyone playing and talking to each other. Plus, it so much fun, as long as l win …. (only joking).

Are you someone who loves to win? Do you have a favourite game? Or play an unusual game you think others should hear about? I’d love to hear from you in the comments section below this post!

The best coffee shops in Leeds, West Yorks area

I couldn’t just write about one local cafe. I love coffee, and cake, and my friends. So, coffee and cake with a friend or a group of friends is my favourite way to spend an hour, a couple of hours, even a whole morning or afternoon. My first recommendation is the “ABC” just round the back of the nearest Asda and staffed, voluntarily, by a local church. Good strong coffee, homemade cake, and a warm relaxed welcome. On a budget. I recently bought two coffees and a butterfly cake, I think it was under three pounds, or thereabouts.

My second recommendation is Hazel’s slightly further away and  more upmarket. Fabulous coffee, and amazing cake. I can never choose which cake to have. The place is always packed. I can recommend the sandwiches, and the beefburgers too. The warmth of the welcome matches the quality of the food. The only downside is, because the place is compact, I could potentially drive my Electric Wheelchair there, but there wouldn’t be space to sit in side without blocking at least two other tables. Of course, the natural solution would be to sit outside. Given the weather though, I won’t be volunteering!

My next recommendation is just as local, in the other direction. The Granary is always packed, even though there are now many more tables than in the previous ‘Little Granary’, and there are queues out the door again even though the larger building has only been open a few months. I can recommend quite a few dishes on the menu because I’ve probably eaten it before.  There is local produce on the menu… so local that it’s travelled from one part of the farm to the other, so there are no ‘food miles’.The farm’s eggs are a best-seller. I’m told people go there just for those! There is also a shop attached to the cafe where you can buy meat from the farm, and local cheese, and lovely gifts. The best part is, after costs, the money goes to support the social enterprise based on the farm.

The final cafe I recommend is ‘Perk cup’ further afield in the centre of Leeds. I only discovered it a week or two ago. Is near Waterstones bookshop, I think. Fabulous cake, tea and coffee, great customer service, a warm welcome, and great value for money. Even my wheelchair didn’t bother them either, and there was plenty space for me. Here they think about all the little touches as you see from the pictures. Even on the way to the loo (bathroom, restroom!!) there are little blackboards on the wall for people to add their names, so the cafe can keep in touch on Facebook, and other so people can write comments about the cafe. I don’t think the carer with me took a photo of the blackboards. but they’re really cool.   I can’t wait to visit again soon. ‘Perk cup’ is my new favourite! Go and check it out for yourself, you won’t be disappointed!

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The image shows a black teapot, a tea-timer with three egg-timers, one green, one black, and one orange, and a white cup and saucer on a plain wooden tray/board. In front of the wooden try sits a white plate and napkin with half a massive ‘red velvet’ cupcake with white icing/frosting.

Let’s all have a Ceilidh!!

Do parties and crowds fill you with energy, or send you scurrying for peace and quiet?

Even before illness reared its head I was somewhat apathetic about parties. Unable to dance well, and struggling to make myself heard I usually much prefer the quiet night in. Especially now, when I am often in bed for eight o’clock due to care times, a late night is often even more of a struggle. I am sure I sound like the original party pooper!

I love meals with friends whether I cook or they do. Informal dinner parties I guess. My very favorite kind of party is a Ceilidh, or Scottish country dancing. I used to know all the steps as I used to go to one every term at university.  As my pain increased and mobility deteriorated it is one of the things I am most sad about having lost the ability to do. There’s lots to watch though: who is dancing with who;  who has just made an idiot of themselves;  and the music is fun to clap along to. Of course, there are often plenty folk not dancing but good luck making yourself heard above the music!  One of these things you love or hate but fortunately most I know love them, though less so on this side of the border. Ceilidhs are a great leveler as everyone can join in whether you’re a dancer or not, adults, children, all nationalities. I guess that’s one of the things I love most about them. See, all this talk of ceilidhs is making me feel less ill already. I have some of the music on my ipod so I’m off to play it!

Midweek healthkick

Wednesday's Healthy  lunch
The picture shows what I had for lunch midweek. A portion of homemade carrot soup, made with a pre-packed ‘soup mix’ of carrots, onions, and herbs. I also included some plain rice cakes, and a low-fat yogurt with fruit purée in it too.

Wednesday’s lunch was very healthy, possibly because I workout later on in the afternoon. I needed energy  and also wanted to start eating healthily before I was told to! T’s so hard to diet! Also, this picture and post is for the weekly photo challenge, so I wasn’t going to be appallingly unhealthy on camera!!

Today is Saturday, and there is at least another six inches of snow on the ground, so I ended up doing my care myself this morning, which has absolutely exhausted me. By the time it got to midday and beyond I was craving sugar. I made some scones with a carer yesterday so I persuaded myself that would do and kept falling asleep mid eating. When I woke at least an hour later, I heated another tub of soup mix that I’d made. There’s just something about soup, especially if it’s home-made. It was so comforting, as I’d made me think of heaps of soup ‘n’ pudding tea-times while I was growing up, and also cause soup mum makes is legendary, and someone or other usually asks for a recipe! It also made me feel so healthy, that I don’t feel so bad about the 11 am biscuits (only 100 cals — bonus) or the cake n’ custard I am planning to have after my meal tonight! When the weather’s like this, everyone should include some stodge! I’m off to make coffee.. and decide what to have later! (Suggestions welcome…)

 

CP awareness month, (in the USA)

A lot of the blogs I follow are based in the US or Canada, especially if they are written by other people with cerebral palsy. Of these, Babbles from Brooke is my very favourite. It is through reading these blogs that I learned March is Cerebral Palsy (CP) awareness month. As far as I am aware, there is no such month in the UK. I wonder if it would make any difference to Government policy if there was?! 

I’m often asked what cerebral palsy is, whether by nursing students, carers, or even new friends. I was reading through some CP-specific blogs and came across this info-graphic which the writer gave permission to share as long as the info-graphic was posted in its entirety.

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The image shows which types of cerebral pasly (CP) affects which parts of the body. The first image shows ‘Monoplegic CP which affects one limb. The second image shows ‘hemeplegic CP’ which affects one side of the body. The third image shows ‘diplegic’ (CP) which affects either the legs or the arms, and finally the fourth image shows ‘quadriplegic’ cerebral palsy which affects all four limbs. Here’s the link to the original post by ‘Fork. Needle. Pen’: http://forkneedlepen.àwordpress.com/2013/03/19/types-of-cerebral-palsy-infographic/

 

I’ve seen a statement on a blog which claimed the CP does not worsen over time. However, new research shows that the symptoms of cerebral palsy can worsen over time. This doesn’t happen to everybody, but it has happened to me. I first heard about this from a friend, because it happened to her friends. Some aspects of the medical profession now also subscribe to this belief. If the symptoms of cerebral palsy worsen, it can often happen between the ages of 28-30. In my case, because I have near enough always walked have damaged my joints enough to be in constant chronic pain, for which I have a cocktail of medication. Eventually it got to the stage where I could no longer support constant walking, and a rehab consultant told me I would need to use an electric wheelchair full-time  or else I would need to be hoisted in and out of said chair in 2 years time if I continued to walk the way I was. This was something of a shock.

It has been compounded by my being unable to drive. When I was assessed by an Occupational therapist (OT) by a variety of tests including identifying signs, using a driving simulator and the infamous block test which tests spatial awareness, or in my case the lack of it. Apparently my reaction times were so erratic that I would need to use hand-controls to operate a car. This was likened to rubbing your stomach and patting your head at the same time. My co-ordination not being up to it, that was that.

Now I use a wheelchair  it both compensates for this, and compounds it. Transport being what it is there are plenty times I have to take a carer and my little chair in order to use taxis.

When I was 16, I began to have spasms. I have no explanation for this, as I never had them as a child. These have also worsened overtime, and have meant covering friends in tea, feeding my dinner to the floor, or occasionally punching someone!! Although I was originally diagnosed with diplegic cerebral palsy affecting mainly my hips and legs, I have some trunk deformities, and struggle to turn my head. My ability to drop things is also legendary as I spend half my life retrieving things from the floor, sometimes causing myself much pain in the process. If anyone knows of a good value ‘reacher’ your suggestions would be gratefully received!

I was adamant that my blog would be about more than just cerebral palsy, however, I figured there was no harm in the occasional post. I’ve always been very open about my cerebral palsy. Hopefully whether you know lots about cerebral palsy or nothing at all this post has been useful to you. If you have any questions (within reason!!) I’d be pleased to answer them. 

since the time of writing I have since found out 4 september is World Cerebral Palsy Daywho knew! !

The (6) impossibles…

This is my answer to yesterday’s daily prompt.

“Why, sometimes I’ve believed as many as six impossible things before breakfast.” – the White Queen, Alice in Wonderland.

What are the six impossible things you believe in?

It took me some time to come up with six but I rather like the finished list!

1. I will live in this flat forever.

I feel so settled here it is impossible to imagine ever leaving. I guess I will one day but I don’t like to think about that. It may be sooner than I think with the benefit ‘reforms’ looming…

2. I will wake up thin one morning as if by magic
I like to think the above will actually happen, and not about the reality; months of denying myself things, and hard work

3. My body wouldn’t need naps.
Naps are good and healthy but some days all I do. I’d be able to control them instead of naps controlling me.

4. I will wake to the news that the House of Lords has forced a u-turn on the abolition of the ‘severe disability premium’ under universal credit. That would be sweet, but impossible, because what’s done is done. I can dream, right!!

5. Someone will invent lower calorie chocolate that is a match for the original and tastes amazing! Haven’t found any, at the moment, except ‘child size’ bars.

6. Esther McVey, the Government Minister for  Disabled People, will see sense and table a motion for the re-installation and reworking of Disability Living Allowance in preference to the ironically Personal Independence Payment.

I’d love to hear what you think of it, and see everyone’s list of impossible things! I’m such a dreamer. However, dreaming aids creativity, as does sunshine! Happy Tuesday, readers.