Digital Sabbath (1) … Who am I kidding, everything’s digital!

An Early Start…

I decided, due to encouragement from others, including Dave Roberts, (aka Partakers_Dave) that this past Sunday, I was going to switch off everything digital. However, as a Facebook friend pointed out, phones are digital too! I keep mine on at night in case I have an emergency, which meant there was the temptation to use the internet that way. That’s why I decided I’d start on Saturday night. I have to confess, I did reach for it, but quickly checked it, and left it alone. However, I didn’t sleep like a baby, as I was expecting to!

I was shocked on Sunday morning to discover the first thing I did after I was up and ready was to switch my laptop on without thinking… there’s a habit I have to break right there! (and, I’ve switched my computer on without breakfast… I notice I’ve neglected the porridge kind as well as the spiritual kind!!) However, I switched it off again, to switch on my radio! This time, I switched it on before I remembered it was digital too. This time, I decided to leave it on for a bit, as UCB Christian Radio has a lot of praise and worship songs on a Sunday, and so the cat strangling began (no actual cats involved, I hasten to add!!) I switched the radio off, and did have a proper quiet time. I love Good Book Company’s Explore notes, so relevant, but without selling-out. Off I went to church, feeling nourished and calm. As an added bonus, I didn’t fall asleep in the service!

What to do, with all this ‘free’ time!

I can’t actually remember what I did on Sunday afternoon after I got back from church lunch. I do remember phoning my grandparents, which meant breaking the Sabbath again, seeing as the phone is digital. Phoning them of a Sunday afternoon is another ‘habit’, but seeing as this is a healthy one I figured it was okay. I did notice that having started the day without the laptop I was more rested in general, with might have something to do with the fact I didn’t fall asleep in my wheelchair as usual, or might just be co-incidence!

I did finally succumb and switch my laptop on around teatime, which was not the end of the Sabbath, as one of my friends pointed out. I’m not really sure why, I think I made excuses to myself that it was okay as I had managed a proper ‘quiet time’ and everything, and I did find in general my head was more ‘Jesus focused’, thinking about what I had heard in church that day on “past, present and future”. (Philipians 3, 1-11, if anyone’s interested).


So, what did I learn?

I have to say, I thought I had learned the importance of not switching the laptop on so soon, and here I find myself in the same situation again having switched the laptop on, and blogging before I’ve had my ‘quiet time’ with my Bible. I guess that’s the main thing I learned, though it sounds painfully simple, how soon blogging has become a habit, when other habits are so hard to learn, or so difficult to break! That, and how obsessive I am about checking my phone! Although, I managed to control that better than I thought. I’m really going to have to be more aware of what I do when! It sounds so arbitrary, but maybe I really will have to put a post it note or something over the switch on the laptop so I notice when I am switching it on! I have no excuses at all seeing as care was on time this morning and everything.  I can hear my dear Granny’s voice in my head, about none of those things being excuses either, and so I am off…


The one with the ‘curlywurly’

An ordinary start, to an ordinary week!

Given the exertions of the previous week, a restful week this week would have been the sensible thing! Not a chance… It was such a long week that I can barely remember Monday. The two or perhaps three staff that are about to leave haven’t yet left, and still they needed to send a carer from another area to cover the respite sit/PA time. Fortunately, this one was lovely and allowed me the same flexibility I have with my regular carers. I bought my usual shopping including said ‘curlywurly’ (chocolate covered toffee in a curly shape, in case it’s not available in the US!)

I got to go horse-riding on Tuesday, which I love as it gives me so much freedom. It’s time out of my chair, it gets me off my estate where I live, and because the horse is so tall, I have an amazing view of the countryside. For the moment the benefit of horse-riding out-weights the horribleness of the pain I am in, and helps with aches and pains because of the movement of the horse. I have a special saddle, which means I mostly sit ram-rod straight, which is good for my posture. I also have great banter with the people who help me. So far so good, until lunchtime.

The ‘curlywurly’ moment

Tuesday was day two of the D-I-E-T. I decided after the trauma of Sunday that I needed to lose weight to help with the back pain and needed a sweet treat fairly low in calories, and that didn’t feel like a ‘diet chocolate bar. Sounds great. Unfortunately, in went the curlywurly, out came the filling, leaving me with a such a large space in my tooth that I kept hitting it with the tip of my tongue. Fortunately, I manged to get an appt to fix it temporarily within only a few days, which is a bit of a rarity in this country. Before all that, I had to get home. More of that in a previous post, as it’s part of a bit of a saga


By this point I was shattered so had completely forgotten about a appointment. My new OT arrived to do a sort of mind-mapping thing of where my head was at this point… great timing. We decided to focus on what my ‘roles’ were… so I am a daughter, sister, friend, listener… to carers as well as friends. It was so helpful to do that. The OT words were that it helps to ‘validate’ things I do manage to do, and where I want my priorities to be. As it turned out, the things I like doing and want to spend my energy on were on the left hand side of the page, and the things I end up spending my energy on were on the right hand side of the page. Things like appointment, being a service user (of several services) and all that entails, and trying to ‘people manage’, which I have ended up doing all of as I don’t yet have a ‘Joint care manager’, after more than four months of NHS funding. My OT told me that after some investigations, my file has disappeared into the either… welcome to my world dear readers, par for the course for me, however pessimistic it sounds. If you aren’t currently working due to being ill/sick and/or disabled, I’d recommend mapping out what your various roles are because it will help to see what you do manage to do and work out what else you might manage to do or to refocus where you are spending your energy. I spent the rest of Tuesday recovering from it all!

A new hobby

On Wednesday, I tried and failed to find a recipe to cook and freeze and decided to make bread instead. This means with me mostly directing, and the carer mostly doing. Somehow I ended up with more flour on me than the carer did! According to the carer, the bread looked like ‘sick’! However, it smelled like bread as it was cooking and tasted like bread when it was out of the oven… result! Odd, that I felt I’d accomplished something new when my carer did most of the handiwork! I’m definitely making it again as it is so much nicer that shop-bought bread and easy to do.

Me, the Social Flutterby

Thursday arrived, and I had a busy day planned, but fortunately this was a Good Day. Lots of banter with the morning carer, which as I explained before makes a big difference. I had a chance to rest, followed by an appointment to update my care plan. Just after this I got a welcome surprise visit from two lovely ladies who are volunteers with the local social enterprise who teach me to horse-ride. We had a great time catching up and there were lots of laughs. They worried about tiring me out, which happens very easily, however,I had time to rest before I went to a well know eatery with the bread-making carer and a dear friend. I left the carer and went to the nearby cinema with my friend to watch the film “Brave” the new Disney/Pixar animation. Caution: skip this part if you’re planning to see the film as this next part contains spoilers. I’d heard nothing about it before I watched it, but quickly realised most of the stronger characters were female. It’s basically about a mother/daughter relationship, and about being careful what you wish for! The moral in the tale is about finding your destiny within yourself rather than from a fate (or higher being?) which I don’t agree with, but I liked film and how it had strong female role models. All the Scottish accents kept me amused thought the film, and being Scottish myself meant I picked up on more of the jokes than my friend. Or, maybe I just have an odd sense of humour. I’d highly recommend Rachael Held-Evans Review of the film, which you can read here. After all of this, it’s hardly surprising I fell asleep in my wheelchair in the early evening.

Friday morning started uneventfully, and I got ready to go and meet my friend. It was fine, until I tried to leave. It being Friday lunchtime it was difficult to get a taxi. I tried to get my manual wheelchair to my carers car, but realised the wheelchair was completely busted. I ended up deciding to put my walking frame in my carers car and wing it. It’s crazy that I had to walk and put myself at so much risk when I have an electric wheelchair, and can’t get a taxi. I had a enjoyable catch up with a dear friend over a pub lunch, but an still suffering the consequences of trying to walk, even though I only crossed the shopping centre, street, and square, and back again. My feet are red raw, I’m exhausted and in so much pain. I really have to get the transport situation sorted. The rest of the day was a bit of a struggle due to medical issues and fatigue. I just completely crashed when I got home.

Drama, Drama, Drama

I’d hoped the drama would stop today but I started the day with a broken washing machine. These things are part of running a household but I have a smaller washing machine because the kitchen units are lower than normal. Absolute pain as I wasn’t informed of this when the kitchen was designed. However, I’ve made things worse as I didn’t fill in the guarantee. Off to start sorting it out so I can party later!

Transport (or lack thereof!)

A thorny issue…

I am well aware that the much-debated  subject of which I write is an understandably thony one, and to which there are no easy solutions. However, it is one which is having a huge impact on my quality of life. It also has a huge impact of the quality of life of many other disabled people too. I am wary that this will sound like a rant, as too many blogs on these and similar subjects can be, due to the depth of people’s feelings and the lack of any real solutions.

Right, where to begin. Transport has always been an issue for me, right from the point I left home at 17. There would be times I would stubbornly walk places, and suffer the consequences afterwards (blisters, pain, spasms. Other times I would fork out for taxis I could barely afford. I have always been someone who would would rather fork out for transport, and expend energy I didn’t necessarily have, in order not to miss out on social occasions. The impact of not doing so always seemed far worse. On the whole I am of a similar mindset nowadays, there just being many more circumstances, much reduced options and much more fear as a result.

For a while now, I have been compromising a great deal, whether that be sacrificing my pride and scrounging lifts off friends, (I HATE asking for lifts ). This means using my mannual self propell (SP) chair or my 3 wheeled walking frame. The walking frame or my zimmer is okay for short distances such as to/from cars and in and around friends houses. The thing is, I am not particularly supposed to be using it at all, though i can get away with it for what I’ve mentioned above. Ideally, I am supposed to be full time in my electric wheelchair. There-in lies the problem. Unfortunetly, this is where the problems start…

The saga begins..

I spend a great deal of my time trying to manage all these problems. A kind of damage, or circumstance limitation you if you will, due to being unwilling to sacrifice most of my social life. If I were to take my new electric wheelchair everywhere, I would immediately have to sacrifice going to friends houses. Then, I would only be able to go to places if I could get a rear-opening taxi, of which there are few. I’ve tried other taxis. There just aren’t many my electric wheelchair will fit into. My chair is very high partly due to the time of cushion I need and also to a possible error on the part of wheelchair services. I asked for this chair to be slightly lower than the previous one. However, it is the same highet as the last one, and the height of the memory foam cushion makes the highet of the chair from the top of the cushion to the ground still higher. Add that to the height of the chair as a whole plus the headrest, and you see the problem.

Then, add in that the local private higher firm only has a few rear-opening taxis, and that they seem unwilling to use them, either because the drivers dislike carrying wheelchair users (I have often heard this though obviously difficult to confirm) and also that this same company has the contract for carrying wheelchair-using children to school, meaning that these taxis are unavailable from 6am to 9.30 am, and from an unknown time (perhaps 2pm at the latest) until at least 4.30 pm, which is most of the time I need to use them. Given all of this, I need to look for alternatives.

One of the biggest firms in my city  also have some taxis where the door open outwards, but again these are in short supply. The taxis which are high enough for my chair are too narrow to be able to turn my chair round and have the chair properly clamped in. The reverse is true for the taxis which are wide enough. I know this too my cost, as my chair got stuck in one of these taxis. Fortunately, the driver was understanding and patiently working out the best way to extract my wheelchair from the taxi. He ended up removing not only the headrest, but part of the sholder support as well, as these are attached, so to do without one I have to do without the other.

So, are there any options left to consider?

The only other solution is to use the local social-enterprise company, who market themselves as being more understanding that other firms, having staff who are more highly trained and more patient, and also stock the kinds of cars which fit more types of wheelchair. I have used these a few times, mostly without incident. However, this is also not without its problems. I am unable to book a church with them unless I book it far in advance, which would mean me being more organised. Also the times at which you can book can be restricted. There are times when I have phoned to book transport to be told that the person who takes the bookings is not available and I have to call back later. Once, I was simply told that had gone home, and the person at the other end hung up the phone on me.

There was also a more recent incident. I had to the social enterprise where someone is teaching me to to horse-ride. I’d decided that morning to take my mannual chair, (which other people then have to push for me) and book are normal taxi, transfering from chair to seat, and the same in reverse,  because of how difficult it is too book an appropriate taxi for the 5 mile distance from my home to the social enterprise. A friend had booked an accessible minibus for a very similar journey to the same social enterprise, at the same times I also needed transport. When the minibus arrived to take her home I asked if I could be taken home in the same minibus. The person refused. I politely explained I was registered with the social enterprise which they work for and my friend explained that I lived on the same estate as the person he was taking home. Still, the person did not budge. I had not booked so that was that. Off they went with an almost empty minibus, and only my wheelchair using friend for company. If they had been willing to be flexible they would have had two fares for the same distance. Given that they are a social enterprise ake a company you;d have thought they’d be greatful for two fares for the same distance rather than one. Later that day, I explained the whole situation to my Occupational Therapist, who offered to call the company on my behalf and make a complaint without indentifying me. I am too afraid that were I to complain in person, I would then be blacklisted and unable to travel with the company at all. My options are limited enough as it is without restricting myself further.

The impact of all of this on my life is such that I now restrict my social life to those events where I can scrounge a lift from friends and take my walking frame with me, suffering the consequences after. For the situations where that will not suffice, I use my precious carer/PA time and ask them to take me on the bus/in a taxi with my manual wheelchair. The main consequence of this, other than the posibility of injuring the person pushing the chair, is that not having adequate support can leave me in agony, and severely fatigued for at least the rest of that day and all of the following day, limiting what I am able to do in the days following. On the times where I am unable to book support I miss out. I also miss out on using my support for things like the gym or swimming because I’ve had to use my support time for when I need to go out with my manual wheelchair.

As you can read, I feel completely out of options, as my elcetric wheelchair is also too big for the bus. I know this because I used to have discussions with my Dad about this when he headed up the day to day running of a bus garage for a multi-national organisation. He would argue that wheelchair users shouldn’t be using the bus because they weren’t a disability organisation. When wheelchair users complained the driver would not allow them on the bus Dad would go and visit them at home to discuss the reasons why.


So, what now?

The impact of all of this is now I have a fear of travelling where once I did not. I am also unsure if my chair would be allowed on trains. I fear not, given the problems I have with buses and taxis. I fear the same problems would transfer, so I have not ivestigated it, deciding it is too much trouble. The consequences of this is that I have missed out on the opportunity of a lifetime: to see some of the 2012 Paralympic Games. There are other issues as well as travel, such as I only have 16 hours support and week not including mornnings and evenings. I could have much more, given the extenrt of my disability, but am unwilling to do so given the impact it would have on other aspects of my life, so choose to have less support, while I still have a choice to stubbornly struggle on instead. One of my carers pointed out to me this morning, that had a sacrificed one sit a week for several weeks, I could have saved up enough support so as to be able to visit the games for a weekend. He fairly rubbed salt into the wound, saying that I would have loved to do it, and that any reasons why I am not going are just excuses. The truth is, I am too unsure how I would travel, given that I have so many problems already with relatively local jorneys, without adding my care needs on top of that. I could of course have thought about a motability car but feel this option is already closed to me. I am unable to learn to drive myself, having been assesed as not having enough co-ordination ir stable enough reaction times to do so. As I have carers rather than PA’s there is too much variation in staff for them to drive a motability van for me. A friend investigated this option for someone else and discovered then that only 3 people were able to be insured to drive the motability car. This is an impossibly low number, given that I’d have to get one of my parents and one of my keyholders insured as well.

I feel I have exhausted all options, therefore missing out on a one in a lifetime opportunity. In my mind, you can’t get any more restricted than that.As to the solution, I have no idea, and it is now to late to find out. I will have to be content with cheering myself hoarse from my sofa and being satisfied with friends’ accounts of the games. I bet no one can cheer louder than me…

Grammar : the s…

Grammar : the scourge of my yoof As soon as I see the word ‘Grammar’, all I can think about is how much I have always struggled with it, and immediately feel a deep panic (or, a deep sense of panic?)  One of my most pertinent memories from school is when my French teacher bemoaned the lack […]

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the joys of being ‘cared’ for….

To blog, or not to blog…

I have no idea whether the subject about which I am writing is often blogged about or not. It certainly has an image problem, as Lawrence Clark suggested in his recent blog for the Indy’s notebook. It is also something which concerns all of us. Someone (I can’t remember who) made a comment to me recently about paying their taxes towards it. I much prefer those jokes to news articles shouting about how much it costs (or will cost) the nation in future years. There have also been articles written about problems within the industry, such as the low wages for long, difficult hours, high staff turnover, (3 staff trained partly for my specific needs are about to vanish!) and lack of organisation. As I do not wish to get any person or organisation into trouble (or indeed myself) I shall not name anyone who is currently working ‘with’ me. I say with, because not only do the best ‘carers’ care a lot, there is also, for me a sense of being in something together, and with the very best ones, copious amounts of banter. Take this morning, for example….

Another morning, with another bugger

Carer A is someone I am incredibly fond of because I like them as a person and because of the startlingly good job they do. I shouted through if they wanted the good or bad news, and they said no news … that I should wait while they prepared themselves (for the headlines). Little things, but makes a big difference. I asked them what they would do when they leave, that they would miss me. They wouldn’t be able to tell anyone they were ‘bloody useless’, for example. His reply, that he would ‘find another bugger’. This is how the morning progressed. The difference it makes however, is huge. I am starting the morning with a smile on my face and a giggle in my throat. As opposed to concentrating on the pain or discomfort, or how hungry I am because I started a d-i-e-t today!!

Thankfully, they don’t all move on to better and brighter things…

Carer B is one who is not leaving, with whom I have similar banter, and who is likely in the coming weeks to moan about having too many hours with me because so many others have buggered off. With whom I will have coffee ‘alfresco’ and catch up on our news after her holiday. A cross between a friend and a carer. A difficult tightrope to walk (or wheel). One who I am happy to introduce to my friends and who all my friends love too. I do not think she gets paid nearly enough for the privileged. As she says, she should get paid at least double for the misfortune of working with me!

‘PA’s’ or ‘carers’?!

Another debate is one for disabled people themselves, whether to employ their own PA’s and struggle to find staff or to have a care agency come in, and all the associated pitfalls. Martyn Sibley is a prolific blogger who has written about this same subject. He chose to have PA’s as it gives him more choice and flexibility. In a ideal world, this might be the route I would prefer, but having had PA’s I’d rather at this moment in time not to have to deal with the paperwork, which makes me feel lazy. Actually though, I’d rather use my energy for other things. Which means, I only have flexibility with the better carers, and I only have banter with the best of them … before they leave. Unless they have dependent children, in which case, they need flexible hours and have no choice but to stay.

It doesn’t take a genius to realise that, (to use another cliche) the current government are shooting themselves in the foot. To truly provide for our future needs, we should invest, invest, and invest again… in more pay, better conditions (such as the abolition of ‘zero hours’ contracts) and in better training in order to attract (and keep!) the best staff for the long term. As it is however, carer A is leaving to work in a branch of a well-known pizza restaurant because it pays more money than care work. Honestly, how is that ever right, even in a recession, that pizza makers are valued more highly than care workers?! Surely this perfectly illustrates why we have some of the problems we have? The world and his uncle (or Auntie) has opinions on this subject, and so here are mine! Am off to enjoy my one day without ‘afternoon care’, a ‘sit’ or ‘respite’, whatever-the-heck-you-choose-to-call-it.


26th August 2012

An aside … to do with the leaving of bread(cake) on roof of car…

Carer C and I were playing a game of sorts today trying to come up with all the things she would and wouldn’t miss about our job. She reminded me of one of her highlights! How could I have forgotten that last week, we made bread and the next day I asked her to take however much she wanted with her. That day, as she was leaving, she put the bread on the car roof before she got in the car… only for some local teenagers to stop her and yell about the ‘cake’ on the car roof. She said the look on their faces is one she’ll never forget. This story is one I’ll never forget. I have as much banter with Carer C as I do the others… and I will miss her much *sob*

This was the week that was The One With the Wedding

The beginning is a “jolly good place to start”

What a week this one was! Really don’t know where to start! Monday started with travel woes though. Not actual travel, just the woes… and panic about if I would be packed in time, when the parents had already packed a lot of my stuff two days before… you get the gist!!

Might have had something to do with the start to Tuesday though! Texting one half of parental unit at 5am as was crawling around in back-related AGONY. Doesn’t matter that said parent (Dad!) didn’t have time to read it till 9, I felt a weeny bit better having sent it. Cue panicked phone call a few hours later,. in which I tried to comprehend not going to only-b(r)other’s wedding. Phone call to doctors surgery went rather well I thought… till I tried to lock the door, phone care co-ordinator and drive my electric wheelchair on full speed at the same time. Had never asked for sit and wait appointment before, but knew they existed as I have a friend who asks for those often. I got seen within 45 minutes by a doctor who knows how complicated I am, and in which appointment we tried to work out which medication regime would be less harmful… don’t try it, it hurts my brain just thinking about it. My carer having met me at the doctors surgery, I bolted home at full speed trying not to wince too much before jumping in the car to speed round to the hairdresser. I thanked them for shifting the appts half an hour later, and they told me to take a deep breath and calm down, as I “looked like I’d had a bit of a morning”!!! One consultation later, hair colour applied, I could finally breathe! Spent the rest of Tuesday trying and failing to feel organised.


The ‘actual’ Travel, rather than just the ‘woes’!

Wednesday morning arrived all too quickly. Cue more speeding around, by the carer not me! I being aided by a well-known brand of pain-and-person-sedative. I dread car journeys at the best of times, but this was worse, as I’d had a nightmare the week before, which I reckon was a medication created hallucination that involved a car crash and ambulance helicopters! I could even hear the helicopters, which was even scarier. The memory of this lingered still. Knowing all too well what I’m like, my parents had very helpfully split the journey in three. The first part passed without incident, and included a stop over at Granny Edna’s house. 🙂

The next morning, after an early start, we were off to the other Granny Edna to collect the fascinator she and my ‘Auntie’ P had found in a florists in Arbroath. Panic not, this one was far more tasteful than the Philip Tracy monstrosities worn by either of Duchess of (i forget her name…) I nearly wrote princess Anne!! Please forgive me, it’s Monday. Beatrice and Eugene, that’s them. After lunch it was off up to Aberdeen too a VERY posh hotel called Ardoe House. After a room inspection we trooped off back to reception to ask if they had anything more accessible. Having been told that WAS their accessible room, I insisted we should make the best of it. I have since considered writing a review on “TripAdvisor” but it most people wouldn’t understand what “visitable” by a wheelchair-user, not fully accessible” means. Said room was a bath, not a walk-in-shower, horrors! I reasoned that at least the floor wouldn’t get flooded, and the bath was low, handrails were also unusually steady and in helpful places. All of these things make a huge difference. That, and the bed was so comfy it meant taking less head-swirling painkillers, always appreciated. The evening was a meal out at Rustico’s. A very lovely Sicilian Restaraunt in ‘A-berdeen’, apart from the two floor stair-climb. However, the loo was surprisingly accessible, especially given that it was at the top of two flight of stairs! still, full marks from me! Very lovely meal, with great company. Great to get to know my almost-sister-in-law, her family and most of the rest of the Bridal Party.


It’s here, Already

Finally, finally, the much anticipated day arrived, horribly early. It was lovely to get caught up in the excitement getting my hair and make-up done by lovely people the bride has known for years, and to get to know the Bride and Bridesmaids more. So relaxed, and so much fun. I’ve only been to a couple of registrar-officiated weddings, but this registrar seemed to rush through it, and didn’t know the bride and groom, which felt rushed and impersonal, at least to me. She left, so that my Dad could give the (unofficial) non-legally-binding Blessing. Wedding done, time for the photos. The award-winning photographer was ace! I managed to succeed in standing for the family photo (with five of us Squeeeeee!!) but almost succeeded in falling backward after… scaring the bride. Thankfully my Mum, caught me!! The meal later was lovely and the staff were SO attentive and helpful, helped make the day. I managed half of the Canadian Barn Dance in the Ceilidh even if I could barely stand after! So pleased though, as it’s one of my many favourites. Just happens to be my favourite-favourite. Lovely to catch up with my bestest-school-friend and some of my parents friends in the evening. Just realised I’ve neglected to mention the speeches. They were amazing, but doesn’t everyone say that! Such a good idea to interspersed speeches with courses of the wedding-banquet. I lasted until the very end of the evening which suprised everyone including me, especially given my #Spoonie ways 🙂

Saturday was a huge anti-climax given the excitement of the day before. We checked out of lovely Ardoe house and headed for Edinburgh to chill out and eat Takeaway. Sunday arrived, with me feeling even more tired than the day before, having had to call through to the parents in the middle of the night for water and painkillers. I still couldn’t move, even one baby movement at a time. horrendous! Thankfully, I made it to my Gran’s church eventually. So loved catching up with her friends, and some of my own. Just lovely to be at a different church for a change and hear a different perspective on two parables I had recently studied in my own church in Leeds. After that, we headed to the car for the journey south. However, this one was long, wet and foggy, in which I relived my hallucination or nite-mare or whatever-it-was. Our lunch stop was at Berwick  Garden Centre for lovely food. Scampi and chips are my ultimate comfort food, (brings back so many memories as well) followed by millionaire shortbread and tea (aka caramel shortbread/cake. What’s the difference (if any!) between shortbread and shortcake?


We eventually got home, it seemed to take an absolute age, compared to the journey up. It won’t have helped that I was squirming in pain. Potentially ‘payback fatigue from Friday’s shenanigans. So painful though, but entirely worth it. Today I’m sort-of-almost-nearly back to normal. I’d love to be off back to bed though! No chance, have spent all my nap-time writing — FAIL! I once watched an excellent Beeb documentary on sleep. I’m sure it said between 8 and 10 am that the heart is vulnerable to attacks (boo!) but that this is also the best thinking-time. It is definitely the time when I find my writing flows best, unless it’s one of those (many) days when I end up back in bed after my carer(s) have left. I’m off to edit this and brew moreTea Pigs Chai tea! LOVE it, the best I’ve found, and my favourite nausea cure. Until next week… (or tomorrow!)

I'm All Olympic-ed up, Go TeamGB

I love plinky… cause sometimes it asks great questions and offers great prompts to help me write one post every day. Sometimes though, it asks stupid questions like “Will you watch the Olympics”, on day 10 of said Olympics. I’ve been watching avidly since the opening ceremony, sometimes admittedly just because it’s more interesting to watch than the usual daytime telly fluff, but other times I am completely absorbed in the TV, like yesterday during the Murray/Fedderer Gold Medal Match, or swimming, gymnastics, equestrian. That said, I can’t wait for the Paralymics, and quite a few friends have said the same. I don’t want to say too much more here, as I shall say more here in the coming days and possibly on The Big Bible Project blog. For now, of course I shall continue to watch the Olympics in my Olympic-ed up flat, no matter how shoddy the BBC coverage is, or how many ‘highlights’ they show. (endless repeats, however you dress them up!) Go Team GB you are amazing!!

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No more fear?

woodlice – what type?

I have overcome many fears in almost 30 years of living with cerebral palsy, among other things! I have almost no fear of falling, but I wouldn't say that is a fear I have conquered, more that I have learned how to fall so as not to hurt myself. This is something that can amuse, amaze or mystify others. Someone else asked me once how I'm not usually afraid of going out and about given my medical problems. Again, for the most part this is something I have always known. I've never been afraid of water, as my Mum was determined both myself and my brother would learn to swim from an early age. I have no fear of heights, as I scaled to the top a climbing wall with (help!) as a 12 year old. I have no fear of confined spaces, as I regularly have to use lifts, thanks to wheels!

I'm scratching my head to try to think of something. I still have fears, but it is hard pin them down, much less put them into words. I guess I've overcome a little bit of a fear of crawling things. It was more of a gradual thing. When I got my flat, there was woodlice crawling from one hole in the wall to another, because of the damp in the flat seeing as it was empty for 6 months. Same for snails, as they're all over the ramp leading to my flat. I even stood on one last night. I had no idea until I heard 'CRUNCH'. (RIP, snail).

I guess the biggest fear I've ever had has to do with moving house and all that entails… moving hospitals, doctors (a big deal for me) and meeting new people. Now I've been in Leeds for three years, I think if I had to move again I might not be so paralyzingly scared, as I've already done a big cross border move, from somewhere in the north east of Scotland to a few different homes here. It's taken so long to be settled. I remember being sat in my room at uni a few years ago crying my eyes out for hours because I felt so lost and afraid… feeling that followed me for a long time. I have a fear of new places and new people too. Rightly or wrongly, I worry about things I can't change. Can I get into, out of, around, through a new building, say when I went to a new church here. What will new people think of me, of my chair, of what I have to say. The list is endless. moving so far away and so often has forced me to face these things. I have met so many friends in random ways. Proof, I guess of pushing through the fear. A combination of prayer, blessing, and stubborn determination has got me through many fears others may struggle with, fears of needles, operations, all those things! Not to say I have overcome them, just that I had no option but to persevere, and continue to persevere, even when all seems hopeless, and a Saviour who was beside me in all of it, and his Word, in which it says 365 times, 'Do not fear' one for every day of the year. One day I'll listen, and finally overcome the fear, but for now, I'll have to be content with my unique mixture of perseverence, subborness, and Jesus! I have to say, I shuddered when I found the picture of the woodlice which accomanpies this post. Perhaps I haven't overcome my fear of them after all…

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Group of friends

My favourite bit of yesterday was when I had a group of friends round. We ate biscuits and chocolates and talked Jesus for a couple of hours. Just a ‘normal Christian activity’, whatever that is. If ‘normal’ and ‘Christian’ belong in the same sentence! I ended up needing an hours nap to recover!

We’re working our way through a study about women in the bible. We’ve looked at Ruth (predictably?) and Hannah. Yesterday though, we looked at Abigail, how she responded to a crisis in her life, and then how we respond to our own crises. If you gave me a list of names and asked me which ones were names of women in the bible, I possibly could have told you she’d made the cut, but not anything about her, except that she wound up married to King David.

According to 1 Samuel (vs 2-44 if you want to look it up she was “beautiful and intelligent”. Just his sort of woman then! Before then though she was married to Nabal… a ‘fool’ because he was happy with his riches and unwilling to share them, and because he had the wrong response to a crisis. Since he refused King David’s request for supplies, his life was on the line. Abigail was the one who went to David (with the supplies this time!) and pleaded that their lives be saved… thankfully the request was granted. The study was talking about our response in a crisis (even when our lives aren’t on the line!) How do you react to a crisis? What’s your survival strategy?

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great bread, great ingredients…

Sourdough Bread

An epic sandwich doesn’t have to have lots of ingredients, just the best ingendients. For me, it would have to be toasted sourdough bread, mashed bananas and honey. The gooier the better, then can scoop any fallen banana up with the bread and get your hands in a sticky mess. Sticky messes are good. My favouite savoury sandwich would have to be toasted bread again, possibly italian, with chicken teriaki, cheese and salad. yum! Disagree with me? What’s your favourite?

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