The Most Supportive Thing

I wrote an entry a while ago about blog posts I’d been wanting to write (I’m really good at starting things…) this is part of one of the posts, there maybe a part two at some point but not any time soon.

Last week (before the phone call about self-isolation) I had a problem with the carers. No one turned up to do my call and then when I eventually tried to call them to chase it up (much later than I should have because I kept thinking “someone will come soon”) I couldn’t get through on the phone, repeatedly. Once I did manage to get hold of them it was really quickly sorted.

And I appreciated three things about it.

I was grateful that in almost 11 months with this agency this is the first major problem like that – and the first time I’ve had to chase where a carer is. I’ve previously had to chase other agencies on practically a weekly if not daily basis.

I really appreciated the carer’s honesty when, after coming running up the path to my front door, she said “sorry, Em, my fault.” Because that takes a lot of guts. Particularly when due to care being confidential she could have just not mentioned it or said something non-committal like “been a bad morning.” And I used to catch the care agency before in stupid little lies about stuff like that all the time. But I did also have to wonder when she started calling me “Em”.

But what I really really appreciated was that when I sent a letting off steam message to a friend of mine saying “Argh carer’s over an hour late and I can’t get hold of the agency.” she sent the perfect message back.

It said: “Argh.”

One thing I’ve struggled with, particularly since starting to have carers/wear compression, is people wanting to solve my problems. I’ve had a lot of people getting angry on my behalf about things. Trying to justify to me or explain why things have happened. Tell me I shouldn’t let things annoy or upset me.

I do realise that it comes from a place of wanting to help me, trying to be helpful. And perhaps it’s how they would like to be supported if they were in that situation.

But whilst I am grateful to have people who wish that for me and have been trying to help. Sometimes I just want to rant, to let off the steam. It feels like nobody wants to be the one to do this – I think it makes them uncomfortable to sit with people in their painful moments – but sometimes I don’t want a solution or people’s anger or justification. I just want to tell you something’s happened that’s upset me.

I’m not just talking about problems with my care here but life in general. But sometimes the most helpful, supportive, useful thing people could do is let me tell you it’s shit and just hear me. All you have to say is “yeah it is.”

Random Bullet Points of Quarantine-ish Life

I have been meaning to write a blog post for ages. And as always I’ve started writing a couple and not posted them. So here is a post of Random Bullet Points of Life, written whilst waiting for a carer.

  • I’ve been advised that it’s worth me started to look into a new powerchair. I’ve trialled the one they recommended three times (I trialled, then when the tech came back to work on my Jive and brought it a second time as the weather was better and I could have a longer go, then it turned out I’d have to have a different seating type if I got a seat riser so they brought one with that seating – but no seat riser – for me to try). It’s not a terrible chair but it’s different. And right now I’m not loving it. So that’s on hold but at least I have an idea what I might get and if I get to a point where I need a new one suddenly we aren’t starting from scratch. We’ve also been able to 100% rule out my getting powered elevating leg rests (something which has been being debated whether I needed since my lymph treatment started) which is very helpful.
  • I went to lymph clinic three and a bit weeks ago. It went ok, not exactly what I would like to have heard but nothing to worry about. And probably now I think of it, not entirely unexpected.
  • The new taxi/support company I mentioned in an entry a while ago took me to clinic and then dropped me in the centre of Oxford for two hours before bringing me home. I zipped through the shopping bits just to see (but didn’t go in any shops) and then went for a long walk through Christchurch Meadow. It was so nice to be somewhere different and walk in different surroundings
  • Just over a week later they took me back into Oxford to University Parks for a long walk. Again it was nice to get out of Didcot and see some different things. I haven’t been to University Parks since I did Race for Life there in (I think) 2008 and I didn’t remember much of it.
  • I took a lot of photos on those two walks which I think will be source/prompt material for my probable NaNoWriMo project this year. I’m feeling very inspired.
  • Last week I went to Millets with the same people and this time they supported me to do my shopping. I bought a few plants, some bits in the farm shop and because it was too wet to go see the animals, we had a jacket potato in the restaurant. It was lovely and it was nice to eat out for the first time in so long although really I’d have rather gone somewhere for a more interesting meal. I think that will be the last time they take me out for a while although I had hoped to do a couple more. Certainly the weather forecast for this week puts paid to all the places I’d thought of going, even if I wasn’t concerned about the increased risk with rising cases of Covid-19.
  • This last week the carers have started coming every evening again. I’m not sure if this is temporary or if I’ll cut it down a bit again – I have some new stockings (and am getting a different wrap for one of my feet) and there was concern if I’d still manage independently with those so we put the calls back in.
  • About five weeks ago the carers also started coming an extra time on a Tuesday to do my cleaning. It’s working very well and although more expensive than my last cleaner (she had only just started when lockdown happened and wasn’t really working out), it was much less than the agency cleaners I had. The really good thing about is that if we lockdown again they can still come.
  • I’ve seen friends (the same ones) a few times and family once or twice (my parents more often). My mum came round to watch Fame on YouTube and work on our crafts this morning. So I am getting some socialising in.
  • I’ve done some CAB stuff – R&C, not advising – from home in the last week or two. I am not good at working from home!

Auntie Emma

Last week I became an Aunt for the first time! Several of my cousins have children as do one or two friends and lot of those kids know me as Auntie Emma (something which surprised me).  But last week I became a proper Auntie.  My brother and sister in law welcomed their first child which was really exciting.

Henry David Nicholas was born Tuesday 13th October 2015 weighing 8lb 1oz.

The level of excitement in the Crees family really had to be seen to be believed. I think in the past week most of us have fallen in love with the baby but calmed down somewhat. I haven’t seen my Mum with him since the weekend but I’m not sure the same could be said for the new Granny!

We didn’t know he was a boy but I’d been saying since the day I found out Geri was pregnant that I thought it would be a boy.  Until the day he was born when I was waiting for news and the word niece kept coming to mind and making me wonder if I was wrong.

Here are some photos (clicking on any photo brings it up bigger)

HENRY 008(photo shows me holding Henry when I met him in the hospital the day after he was born. It’s taken over my shoulder and my face isn’t visible. My shoulder and arm are, I’m wearing a bright pink fleece.  Henry is asleep with his eyes closed and has lots of dark hair)

20151014_154239Ben and Geri holding Henry in the hospital. Geri is in bed and they are looking at Henry, not at the camera.

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Me holding Henry in the hospital. He’s tucked against my shoulder and I’m smiling. The blanket I made for him is over him and I have one of my hands on top of it helping to support him/hold it in place.

cropped blanketThis is the blanket I made for Henry.  Photo was taken in my messy lounge and the light isn’t great for the colours (cream, beige like and a midbrown) but it shows the detail. It’s being held up in front of someone but their head is cropped out.  The blanket is crocheted and is made up of 25 granny squares joined together with a thick cream boarder round the whole blanket.  For some reason I always thought granny squares were too complicated for me but when I set to learning to make them for this blanket I quickly got the hang of them and after several trial runs to get colour combos and hook sizes right I now love making them.

I have loads more photos – I swear between all the people he’s met thousands must have been taken – but a lot of them are still on my phone so I’ll leave this here.  But I reserve the right to do the excited Aunt thing and post more soon (I went to something new yesterday and was asked in advance to prepare a presentation introducing me. My slides were all photos and I put one of Henry with the blanket I made him in – snuck it in on the excuse I could talk about my crafts. But really I put another photo in for crafts and used that photo of Henry to boast about being a new aunt)>

The Wedding of Sophie and James

I’ve been telling people I’m going to post this “tomorrow” since last Wednesday. And now I finally have.

On Saturday 19th September 2015 my sister Sophie married her partner James at Lains Barn in Oxfordshire.  I was a bridesmaid along with my sister in law and two of Sophie’s friends.  It was a lovely occasion and after a terrible week of weather the day of the wedding was hot, bright and sunny.  As was the next day when we had a brunch to continue celebrating at my parents house.  It’s not been as nice since.  I really enjoyed the opportunity to see friends and family – some of whom I hadn’t seen since my brother’s wedding nearly two and a half years ago.  As we went out separate ways at the end of the day we said we’d make plans to meet again soon.  So often that’s one of those things we say but don’t follow through on but I hope we do in this case.  It was also nice to meet James’ family who I hadn’t met before.

I’ll put captions under each of the photos but in terms of visual description I’ll post some basics here first.  The bridesmaid dresses were fuschia which was a much darker purpley pink than I had been anticipating when I was told they were fuschia – I’d imagined a much hotter pink.  Some of these photos don’t do them justice colourwise. The dresses were floor length but I had mine taken up substantially to stop it catching in my wheels. James, his dad, the ushers/best man and my dad all wore three piece suits with a white waistcoast and a fuschia cravat.  My brother was an usher.  My mum wore gray/lilac with a purple fascinator.

I don’t have any photos of the ceremony or immediately after as I didn’t have my phone with me at that point.  A lot of the photos didn’t come out very well but here are the best of them.  One or two of these were shamelessly stolen from Facebook.  The photos aren’t really in order and if you click on them you can view larger (although for some reason some of the larger ones aren’t the right way up)

20150918_170841Bridesmaid prep from the day before the wedding – my hand holding a glass of prosecco and showing off my nails.  They were gel nails with gems along the bottom of each and they lasted chip free until yesterday (so about 10 days) when they just started peeling off. Most of them came off in one piece.

20150919_16163620150919_162244wedding favour – sunflower seeds in a little brown envelope/packet. The top one has the front – a picture of a tree and says Sophie and James and the date and Let Love Blossom. A small piece of paper with my name on is attached with a mini wooden clothes peg. The second picture shows the back and reads: Sow these seeds and watch them bloom to remember us the bride and groom. On the bottom seam of the packet it says “Sow with love”

20150919_183225Bridesmaid bouquet (with my wedding favour tucked in the top so when we came back at the end of the day we’d know which was which). Lots of pinks, mostly roses in this. It’s resting in a large jar on a table.

20150919_183315Flowered centrepiece for the table

20150919_182100Me and my brother after the meal. I think this is one of the best pictures of me I’ve seen from the wedding and have made this my twitter and facebook avatar.

20150919_191942Sophie and James just as a bunch of people were about to through confetti over them. You can see a friend of the family, Pat, in the background getting ready to throw.

20150919_192740Cutting the cake (which was made by James’s sister)

ushersandbridesmaidsBridesmaids and ushers with the bride and groom

creesfamMy immediate family – Geri (and bump!) Ben, James, Sophie, Dad, Mum, Me.

IMG_20150919_152623Me with my cousin’s son Charlie who is 9 months old. Someone told me this photo looks like we’re communicating telepathically.

20150919_210934Hog roast. Perfect evening eats. (The wedding breakfast was a barbecue). I’m a Crees, I had to take a picture of it.

20150919_213444I wheeled through the bar and one point and spotted my mum’s shoes, handbag and another of her bags hanging off a row of coat pegs. It’s fair to say she made herself at home.

20150919_192853This is a silly one. It’s the photographer, from the back. Because everytime I saw him with his camera straps across his back like that it made me think of some sort of “going into battle” harness.

20150919_232717Atmospheric lights, glitter ball, beams of the barn shot.

20150920_000308Me holding my flowers, taken at the end of the night when I suddenly realised I’d not got anyone to take a shot of me as bridesmaid for me.

20150920_112434One from the next day, because it made me laugh. We had a brunch for family, bridesmaids, ushers etc the next day at my parents house. The various flowers from the wedding were dotted around and some people took some home after the brunch. I spotted this wreath of flowers hanging from the outside tap. Because where else are you going to hang the flowers the day after the wedding but from the outside tap?!

Random Bullet Points of Life

For the small things worth mentioning but probably not worth a blog entry of their own

+ The furosemide for my lymphoedema is working and my feet are improved. Still obviously swollen but less so and my trainers fit better (but are still out of shape). I’m pleased. Blood test tomorrow to check the meds haven’t messed up my kidneys (and at my request check my iron)

+ I got sailing for the first time in several weeks last night. I really didn’t think I would based on what they were saying in advance about the weather but I was bored so we went to see. Even when we got there I wasn’t sure but the wind dropped down and I got out for about 45 minutes. It was good. I took a couple of pics to do a “spotted at the sailing club” entry but when I looked back at them they weren’t great. I put them on my instagram though.

+ I’ve been trying to do more with instagram actually rather than just taking pics and doing nothing with them after I accidentally lost loads of pics a while ago – wiped what they were on thinking I’d backed them up to my PC then discovered no they weren’t. I’ve got several pics I love on there.

+ For the first time in ages I went looking for a new layout for this blog and found one I really love.

+ My sister’s hen do is this weekend. I’m looking forward to it.

+ Bake Off started again this evening. I liked it. Part of me would like to see about going to a filming of An Extra Slice again, especially as it’s now being filmed at Waterloo so I could take my powerchair. But I won’t because they were rubbish at access when I went (didn’t have wheelchair spaces as such, made my friend sit separate to me and kept asking me to transfer) and I mostly just want to see an episode before everyone else again.

Self-Care Sunday: Something New and a Surprise

I’m continuing in my quest to spend less time online. I didn’t come on at all yesterday. Which is now two weeks running I’ve had a day off. And I suspect I’ll have one next week too if the weather doesn’t put paid to certain plans. I quite like it.

Mum and I went to a two hour craft workshop yesterday. It was on Mono Printing. I’d never done it before and to be honest I didn’t really know what it was. To start with I didn’t think I was going to enjoy it. It was a bit late starting because the majority of people doing it were late. And it was a bit slow getting going.

Mono printing, basically is where you get a sheet of plastic or similar and cover it in ink using a roller. You then put a piece of paper on top and draw or trace or even just press with your fingers a design. This then shows up as a print on the other side. It was very messy! We both had gloves on but Mum ended up with ink up her arms and on her elbow. And I’d meant to put my hair up but forgot. Meaning when I went to push it out of my eyes I got a nice blue streak on my forehead. Plus a red blob on my powerchair control. It took a scrub or two but it all came off.

Neither of us liked the first exercise he had us do but once he said go do your own thing and got us going with tracing stuff from magazines and making up our own designs we got quite into it. I ended up being a bit disappointed it wasn’t longer because I’d like to play more. Mum was talking about buying some of the stuff for another go so maybe we will…

I think my best piece was accidental however! I might take pictures tomorrow, I don’t really want to touch them in case the ink is still dry (I doubt it by now but last time I looked I got ink all over me again).

I read for an hour or so while having lunch when I got home. Then I took a two hour nap. I’d not intended to sleep that long but it was lovely.

My sister in law’s 30th birthday was this week and my brother surprised her with a trip away. They got home yesterday and he told her they were going out for dinner but that Mum and Dad wanted them to pop round first to give her their present.

She didn’t seem surprised to see a table with cake and presents and me, Sophie and James (Sophie’s partner) there as well. What she didn’t know but soon found out was that we were all in the kitchen but down in the bar/conservatory were 9 of their friends hiding. Mum lit the candles and we all started singing. At the same time Soph snuck down and got the others who walked up and joined in the singing.

Geri seriously had no idea. The look on her face said it all. She went from person to person hugging them while we finished singing and I thought at one point she was going to cry.

We had pizza and drinks (pink fizzy wine!) and hung out for a couple of hours. It was nice to see people and chat although I don’t know many of them that well. Everyone apart from my parents and me went into Oxford for cocktails then.

I stayed with my parents for another couple of hours chatting, watching tv and drinking some Smirnoff ice which mum had got for me for a treat (because I’d mentioned not having had any for years and sort of fancying some earlier in the week). I got home abut quarter past 10.

Yesterday was lots and lots of fun.

You Know You’ve Got CP When…

…the shoes you call your ridiculously impractical shoes are the same sort as your able-bodied sister and mother frequently wear as sensible everyday ones.

For years I’ve lived in trainers. But only a specific sort. So much so that the pair I have now is at least my third identical pair but come to think of it is probably actually my fourth. And I should probably buy a new (but still identical pair) because no matter how many times I look for something different I can never find it. The idea that Skechers might one day discontinue them secretly fills me with horror.

Because no one else does shoes which
Are supportive
Undo completely and very easily
Have no form of heel
I can wear without socks regardless of the time of year
And are deep enough to accommodate my often very swollen feet.

Its no secret that I’m not a fan of shoe shopping and that shoes hold no real appeal for me. The more often I can go barefoot the more I like it.

But a few weeks I went shopping. I needed new black trousers and I was beginning to think a spare pair of Skechers would be an idea. My current pair probably have a few months wear in them at least but having worn my last ones until they fell apart and then for several uncomfortable days after as I literally had no others, a spare seemed a very good idea.

So I’m in Evans getting trousers (and an unplanned but gorgeous top) and I’m looking at shoes because you never know. And I spot a lovely pair of ankle boots.

Several years ago when I was at uni I did have a pair very similar I wore often. My shoe related issues weren’t quite so extreme then but you know it’s still possible…

So being that I’m unable to try shoes on when shopping I check if I can return them if they don’t fit then buy them. And I don’t want to try putting them on myself first in case they don’t fit (my unusual shoe putting on techniques can batter a bit which isn’t good if I’m returning them). A quick phone call to my sister telling her I’ve bought completely unsuitable shoes follows.

She asks in what way they’re unsuitable and I’m like
“They probably won’t fit but even if they do I probably won’t be able to get them on myself and even if I can I probably won’t be able to transfer in them.”

And she’s all “oh in pretty much every way then.”

I popped up to see her and she informed me they aren’t shoes, they’re boots. And then helped me try them on and surprisingly they fitted. They didn’t quite zip up to the top but its not an issue.

Eventually a long while later I sit on my bed and try them myself.

It’s sort of like
I know they fit.
I know how they should go on
But I can’t work out how to put them on cripple style

And as much as mum told me to take them back I’m keeping them. Because every girl needs a pair of ridiculous shoes. Even if they are meant to be the sensible type shoe.

(I was going to end this with something I’ve heard a lot which is that every girl should have a pair of shoes she loves but can’t really walk in. But you know in my CP world that’s pretty much every single pair of shoes I’ve ever owned so I thought it too obvious).

A Few Wedding Photos

On Saturday 25th May 2013 my brother Ben married his partner of ten years Geri. I won’t make the standard joke/comment about their names but feel free to if you wish. Here are a few photos of the wonderful day we had. The ones marked Facebook come from my sister’s profile and hopefully she doesn’t mind!

In terms of visual description I’ll put a bit by each photo but in general:

The wedding took place in a large and very lovely converted barn. I’d call it stylishly rustic. It had lovely gardens at the front and the back. The weather was absolutely horrendous the day before, properly storming cold and gray. That day was glorious. Bright, sunny and warm but not too hot. Perfect in fact.

The bride wore a gorgeous white dress with a long train and a bit of sparkle.

All of the men in the wedding party wore three piece suits with cravats. Ben, his best man and Geri’s grandad (who gave her away) had purple cravats. My dad and the ushers had silver ones.

My sister (Sophie), Geri’s sister and two of her friends were bridesmaids. All of them have long hair which they wore half up and down. The dresses were strapless, long and a dark almost midnight purple.

My mum wore a gray dress and jacket with a dusky rose fascinator/hat. I call it a fascinator because it’s on a hairband. She calls it a hat and looking at the pics she’s probably right.

I used my powerchair for the day. I wore a red dress which was originally was ankle length but my friend took up by six inches for me as it was too long for my chair. My dress is sleeveless and I had a black cropped shrug over it for some of the day. I made myself a black and silver scarf (knitted using Sirdar Firefly) and had that on for part of the evening. My shoes were black Skechers (this is me we’re talking about) and I had a black clutch. My hair was twisted and a little bit spiked up with five tiny plaits in the front. I had a red fascinator with a flower on it and my 3e love wheelchair heart necklace on. I wore very red lipstick and nails.

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Ben and his best man before the ceremony

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signing the register

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Mr & Mrs Crees

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Sophie and I in the garden after the ceremony

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My parents sitting at the top table during the meal (via Facebook)

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Mum and Sophie with my cousin’s daughter Isabelle who will be two in July (via Facebook)

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Dad and I in the early evening in the other garden.

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Cutting the cake (via Facebook)

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The first dance – Always by Bon Jovi

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.