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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Yesterday…

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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“For Your Perusal”

“For Your Perusal” Interesting word peruse. Almost as though you are looking for something, searching diligently in the text you are reading. Perhaps something complicated that requires your full concentration. It’s almost too much to think about this early in the morning! Though I did see a BBC documentary once that said the best “thinking” times […]

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Anyone for coffee?

A time to rest…

This week has certainly been quieter. I can’t even remember what Monday was as it feels so long ago. Tuesday also passed quietly. I was unable to go horse-riding, as the main person who is teaching me was on holiday. It was good to rest as I knew the remainder of this week would be busy. I guess for once I’ve been fairly successful in pacing myself, as I am encouraged to do in order to reduce my levels of fatigue.

More trying times

Wednesday was another story however as I had to trek into town to collect my new glasses. Given what had happened last week, I was somewhat dreading it. However, I am relieved to say it passed without much incident. Unfortunately the same can’t be said for the rest of the day. I had my Electric Wheelchair with me which severely limited the the number of places I could meet a lovely friend for coffee. We ended up at one of the branches of a major chain. I’m fairly sure the disabled access for this building was added on later, rather than being purpose built which meant access was via the fire door. The staff had left this open, so far so good. We managed to find a table I could use, Jo found us, and we settled in for a good catch up. Two coffees later, I needed to make use of the facilities. I’d remembered from previous visits that these were upstairs but knew there was a lift. I’d forgotten how small said lift was though. If my chair was a millimetre longer I wouldn’t have fitted into it. I lifted my feet so as they didn’t scrape the side of the lift but fortunately there were no injures, and later I left the building unscathed. It brought back memories of a lift I used at Stirling Uni years ago which I and my friends christened ‘scary orange.’ It was a tiny, noisy platform lift which often broke down and we all hated it so much we mentioned it at disability access meetings. People were queuing up to say it wasn’t them who’d put the lift in, and no one would take responsibility for replacing it. I hope it’s not still in existence!

On Thursday, I needed a break to recover. Between Twitter and Facebook I asked people to vote on what I should do with my afternoon; bake a cake or head to the gym! The answer to unamimous, cake won! These days it is much easier to delegate and supervise… deciding when the mixture had been beaten enough, and when it was ready to go in the tin. I was rather impressed with the results! The contained I needed to store the cake in was miles above my head. I hadn’t remembered that till I was on my own. I tried climbing on a chair to retrieve it to no avail, much to my night carers disgust. She got the container with help from the mop handle and safely stored it away for Saturday.

Good Chaos!

Friday morning was rather chaotic, but definately good chaos. I have writing about the decking out of the flat here. Along with my friend Bryony, my friend Emma was also visiting with a young charge. As with the cake making, I whizzed about supervising another friend who was filling the UFO with medication, making sure everyone had drinks and London 2012 cakes! The morning was so much fun, the best in ages. It is so lovely to have those normal times with friends. It makes such a difference. Friday afternoon was back to normal with yet another appointment, however this one was fine. I have more changes to make to my ever expanding list of medication, but hopefully will have less pain at the end of the experiment.

Saturday morning, and a friend I haven’t seen in years arrived with her baby daughter for hours of chat, tea and cake, and more chaos. It’s always lovely when you can pick up where you left off as those we’d seen each other recently, rather than only keeping in touch over facebook, as we had done. I guess the jury is out as to whether online or offline friendships are the most beneficial. Have read, and written a couple of different posts, and am still thinking about it. Was great to see my friend and meet her lovely daughter. These visits make my week. If it wasn’t for loyal friends my social life would be so much more limited. I spent the rest of the day finishing my latest post for The Bible Bible Project. Not sure yet when it’ll be published.

 

Today has been one of those days when I found it difficult to be motivated, arriving late for church. I had managed a decent quiet time this morning, and am greatful that semons appear online later in the week. It helps make up for not concentrating this morning. Have spent the rest of the day catching up with coverage of the Olympics and writing. Is lovely to feel so peaceful and am hoping this will be a good start to the week. Definitely time for coffee tho…!

London 2012 (sort of…!)

I may not have tickets for the Olympic Games, but I am fortunate enough to be watching it from the comfort of my front room, and tweeting along with half of Britain as it is played out on the TV and in the rolling commentary on Twitter. It makes me feel like I am watching the ceremony with company. My flat is bedecked in a Team GB flag, bunting, and balloons, and I have the boom-sticks, the foam hand, and a flag to wave! What is the point in spending all that money? Everyone who came through the door since I decorated the flat has asked that, but it was heaps of fun, and a welcome distraction from the minutiae of everyday life. Plus, a god excuse to spend time with the lovely Bryony. Thank you to her, and my friend Emma for their help in decorating the flat, and to Bryony for being photographer for the morning! Let the Games begin!

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What do you write, when it’s already been written?

It’s only a day since my first post, and here I am writing another,  largely because I’m unsure what to write for my next #digidisciple post. I’m panicking instead of praying… perhaps that’s my first mistake! I often feel other people have said the things I want to say before, and I’m scared of looking like I’ve written exactly the same things. I guess it’s partly a lack of confidence. It’s also part of the reason why I put off starting a blog for so long. I do the same things, week in week out, and in general see the same people. Also people tend to visit me, as I don’t always have the energy to go out and meet people. A lack of variation means I lack inspiration, as well. How do you be semi-housebound and still write interesting things? I’m in awe of people who manage to do that! I’m going to have to spend the next couple of hours on the hunt for something. Any suggestions are welcome too! 🙂

I may be sat… but I’m all that

Thanks to lovely Julie for coming up with the name of my blog… “I may be sat… but I’m all that! It looks a bit clumsy in the blog address so I haven’t added it for now… till I talk to one of my blogging friends! I love that every single person who’s heard it has giggled.  I picked a tricky week to start my blog as it may well take hours to finish it!

This was the week that…

Somehow, you just have to pick somewhere and start… and somehow this week started badly. I’ve had glasses since I was 11 so had thought getting an eye test would be simple, and always forget I have one of those faces. I need thick lenses but small frames. I finally found frames that I liked that suited me… but that was the end of the story. I have written them an email to ‘explain my experience’ rather than complain, as a family member put it, but haven’t sent it yet. The staff were uber polite as always, almost to a fault. I should have known we were off to a bad start when one of the staff asked my PA if I could get out of my chair. If it wasn’t for my PA potentially doing herself an injury moving my little chair in tight spaces between the testing equipment we would have been stuck. I’d love to see what would have happened if I’d turned up in my electric wheelchair!

The next thing they asked my PA was “can she walk”!!  I’m one for keeping my head down sometimes and doing whatever I need to just to keep the peace. My PA wasn’t having any of that so we waited for the one room that was wheelchair accessible. I wasn’t asked or told any of this when I made the original appointment. The actual eye test with the optician went fine. Trying on glasses was another story though, as the girl who was helping me trying on glasses complained about having to hold a hand-held mirror so I could see the glasses, being too short-sighted to see them in the fixed mirror. Another two staff came over to help, so in the end I found some glasses that fit… that was the enough for my PA who went off for a cigarette while I filled in the paper work. The best customer service was when she wasn’t there! That says it all. The staff obviously found it hard to cope with me, my chair, or my PA. The irony is I couldn’t have got to the appointment and got through the tests without my PA so they only got the sale with her help! They need Disability Awareness Training and they need it now! This one incident shows why my blog has the perfect title!

I’m supposed to pace all my activities so I can still have a life, but have adequate rest at the same time… I’ve never managed it yet. On Tuesday, there was the second of their workshops supposed to help me and others like to me to manage the crippling tiredness better, but it felt like a lecture. My PA, this time was largely  ignored, and only used for one part of the group at the end… another frustrating day. The people who organised the training didn’t even bother to learn Julie’s name when they’d encouraged me to bring her along in the first place. Yet again I didn’t handle this well as I didn’t say anything. Another email to write once the workshops are over to ‘explain my experience’! We went straight from one appointment to the next, but fortunately this one went more smoothly.

By the middle of the week I was exhausted and in need of encouragement. I tweeted that I needed some cheerleaders and my friends didn’t disappoint. I forgot that my Twitter feed and my Facebook page are linked so this appeared on my Facebook page too. By the time I realised, one friend had already written some tips to help me get more motivated and help me get started on things and Bryony had already posted a cheer! too late to delete the post now! Actually this was my favourite part of the week. I love my friends to bits and they were there when I needed them. I’ve blogged elsewhere about the usefulness of social media when you are semi-housebound but this still took me by surprise.

The rest of the week was somewhat uneventful. My weekly horse-riding lesson in the sunshine was a welcome break from my wheelchair, and worth the pain! Followed by an appointment with volunteers from re:map to help design some me-friendly equipment. This is a work in progress but should be worth it eventually. After the week I’ve had I’ve had a welcome couple of days rest. Having not  paced the rest of my week I’ve collapsed in a heap. I still have much learn about how to manage things.

I still made it to church today despite how I felt. Peter preached on 1 Philippians from verse 19 to the end of the chapter, the verse that talks about “To live is Christ, but to die is gain”. As ever there was a huge challenge from the passage and from Peter’s preaching. I will post the link to his sermon once it’s up on the website.  Was lovely to have lunch with people and get know some newer friends better. I spent the afternoon asleep recovering, known as ‘payback’ fatigue, but it’s always worth it.

This week is set to be quieter. Just as well… have to come up with my next #digidisciple post, amongst other things! Wish me luck… or do the praying thing, if that’s your thing! 🙂