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!

Hints of Normality

I’ve been quiet here lately as I experienced some ableism (that was made worse by the fact it was from someone I thought was a friend) and that took up a lot of head space made me withdraw slightly for a bit. But as much as I did need to step back for a few weeks I don’t want to stop blogging here completely.

The other thing that’s taken up rather more of my headspace than it should have is a problem with a carer. Now resolved and handled very well by the agency. It was sad for two reasons – one it was completely ridiculous and a carer I had thought I’d get on well with when we met and two, this agency have handled it so well it’s just another example at how bad the previous agency were at dealing with certain things. I keep having realisation moments like that and I find them difficult because it was a struggle with the previous one for a big chunk of the time (not always) and so many of my friends were telling me I needed a new agency for ages. But I didn’t think there would be a better agency out there.

Hints of normality are continuing to sneak in.

I’ve been briefly shopping twice, about ten days apart. I managed to get pretty much everything I wanted (of the things I could get in shops here) and the things I couldn’t get were mostly things I’d wondered if it would be tricky – like a couple of books that I’d thought might be too specific for our small Waterstones. I also managed to finally find and order myself a set of weights after trying for all of lockdown. I haven’t been to the supermarket but will probably go next week, at least to pick up my prescription.

Shopping was OK. M&S simply food was the only place it felt difficult and stressful but Mum had said it had’t been easy when she went. And I bumped into one of my friends from my writing group and her daughter (who I hadn’t met before) and have a long chat the first time I went shopping.

A few days before that first shopping trip a couple of my friends came to visit in the garden for just under two hours. We had a long chat and swapped some books. And the weekend just gone the new wheelchair taxi people I mentioned last time dropped me in the village I used to live in. Some other friends who no longer live in the county met me there and we sat in the park for a few hours then went for a bit of a walk along an old railway line. I went a bit further once they needed to leave then turned back and walked home. I would really like to get back up there for a walk again.

It’s been really nice to see friends again. I’m not sure how much that’s going to be possible but I’m glad to have done it. Sadly I think my other few good friends I won’t see in person again this year (or at all in one case) due to the distance.

One of the powerchair techs came out yesterday to service my chair. I hadn’t expected when I rang on Tuesday that they’d say “he can come tomorrow” I’d been expecting next week as it was routine so that threw me a bit. The verdict was it needs a few consumable bits (some of which I’d twigged and others I hadn’t but they’re either about due or not entirely unexpected) replacing, new footplates (I knew they were bent but had hoped it was just a new bolt required) and it is still rattling and squeaky! It’s going off the workshop at some point for some TLC.

I’ve seen both my nephews this week (each of them separately spent a day with my parents). It was the first time I’d seen Rafe since June and he’d definitely grown and was much more alert. Mum thinks he’s going to be Grandad’s boy (a bit like how Henry is all about Granny) but I’m not so sure. I snuck a quick cuddle with him which was lovely, if possibly not the most sensible thing to do.

I only saw Henry much more briefly because the powerchair tech rang when I was on the way out the door to ask if he could come three hours early. He (Henry) was busy looking at the things he and Grandad had planted but it was good to have a chance to say hello.

The only other thing I’ve done (other than you know reading and crochet etc) was sit in my mum’s garden for a few hours on Monday and teach her how to do corner to corner crochet. It took a fair few attempts and she didn’t think she could do it (I thought she could because it’s easy but it IS tricky to start a piece off). However a few hours after I got home she sent me a photo of her piece and she’d cracked it.

Mentally I did get quite fed up and down last night but I’m better today and doing OK overall.

Matilda!

Earlier this week I went to London, had a wander round by myself (getting slightly lost) and then met up with friends (including a very excited almost 7 year old) and we went to a matinee of Matilda the Musical.

It was fab.  I did expect it to be funnier than it was – I had high expectations for that because Tim Minchin who is a musical comedian (and one of my favourites) wrote the lyrics. But when I thought about it afterwards he’s known for clever humour. And this was certainly fully of clever lyrics with humour woven in.  I would much rather have that than it be full of cheap humour.

The staging and the effects were brilliant and the songs catchy and fab. I’ve downloaded the soundtrack and been listening to it a lot since I got home.  It’s a couple of years since I’ve seen a musical and wanted the soundtrack (although to be fair the last musical I saw was Mamma Mia and I already had the film soundtrack or I’d have got that) The cast, especially the kids were spot on.  It just worked really well which given that three of the last nine or so musicals and the last play I’ve seen have been disappointing was brilliant.

I would highly recommend going to see the show and it’s definitely going on my list of shows to see again if it tours.

The Cherry Tree Cafe by Heidi Swain

Last November  I went to the Books and The City Creative Writing Masterclass (I wrote about that here).  I had a great time and I’ve since kept in touch with several of the other writers who were there.

One of those writers was Heidi Swain. And she now has a publishing deal with Books and The City.  I was lucky enough to hear Heidi read an extract of that when I went to the Books and the City blogger evening in March and I’ve been really excited to read it ever since. Her first book, The Cherry Tree Cafe by Heidi Swain is being published on 16th July (ebook only).  I received a free ARC in exchange for a review on this blog and really enjoyed reading it.

Cupcakes, crafting and love at The Cherry Tree Cafe…

Lizzie Dixon’s life feels as though it’s fallen apart. Instead of the marriage proposal she was hoping for from her boyfriend, she is unceremoniously dumped, and her job is about to go the same way. So, there’s only one option: to go back home to the village she grew up in and to try to start again.

Her best friend Jemma is delighted Lizzie has come back home. She has just bought a little cafe and needs help in getting it ready for the grand opening. And Lizzie’s sewing skills are just what she needs.

With a new venture and a new home, things are looking much brighter for Lizzie. But can she get over her broken heart, and will an old flame reignite a love from long ago…?

For everyone who loves settling down to watch Great British Bake-Off, the Great British Sewing Bee, or curling up to read Milly Johnson or Jenny Colgan, The Cherry Tree Cafe is a coffee-break treat.

I really enjoyed The Cherry Tree Cafe. I’d thought I would but it was even better than I expected. Lizzie Dixon was a brilliant character who reminded me of many people in different ways and was just real. I had a real soft spot for Jemma and her family though.

The Cherry Tree Cafe was a gorgeous setting and I wished I could go there and take part in the crafts.  The last couple of months crafts have mostly been crochet for me but I’ve not had a lot of time and reading this book left me itching to pick up my hook again.

It was a fun read and it made me laugh out loud in places. The Cherry Tree Cafe was the perfect escapist read, great for an evening in the garden when you just want to switch off and read in the sunshine. Heidi Swain has a turn of phrase that I loved and I’ll look out for more books by her in future – if you want a holiday read or just an easy going enjoyable read for lazing around at home you won’t go wrong with The Cherry Tree Cafe.

N is for…

N is for NaNoWriMo

For those not in the know NaNoWriMo stands for National Novel Writing Month.  It’s a yearly challenge that takes place every November to write 50K words in those thirty days.  I’ve done it several times since 2004.  I’ve won a few times but I’m lost many more.  Only not really because every word written is a win if you think about it.

NaNo has been great for me because it got me writing properly.  My first ever long piece of writing was a NaNo project, specifically a very bad Harry Potter fanfiction which before anyone asks was never posted in it’s entireity online.  I think I’d like to read it again but it’s probably better I don’t.

It’s also been great because I’ve made friends.  Some I just see in the group and the meet ups and several I’ve lost touch with over the years beyond sporadic tweets etc.  But I’ve got a couple of very good friends I met through NaNo – ones I’ve been to the paralympics with, and up the shard, for drinks and chat, theatre trips and breakfast in Giraffe (yesterday) and even to one of their weddings and that’s a whole lot of impact on my life and positivity that’s not to be scoffed at.

In many ways I’ve lost my love for NaNo now.  The year I acted as Municipal Liaison played a big role in that but I think it’s partially to do with maturing as a writer too.  I’ll still think of it every year and probably give it some form of a go.  I hear a lot about how it’s a bad thing and how NaNo ruins writing.  My suspicion is that some of those are valid points.  But I’ll always have a soft spot for it and think it’s a great thing.  Because for me it’s about more than the writing

Self Care Sunday

It’s generally been a terrrible week but there have been a few good moments and I’ve had a great day today despite a few moments of anxiety (new people, train faffing)

I’ve had three days of antibiotics (nitrofurantoin 100mg x 2 daily) for a UTI. And I ended up feeling physically appalling. Sick, dizzy and yucky on top of the usual UTI symptoms.  Finished those yesterday and feel better today which sort of proves the theory that I’ve had for a while that nitrofurantoin makes me nauseaous. As UTIs can make me feel sick it’s been hard to tell.  I’m not 100% right yet.

I had a whole night of insomnia. Which may or may not have had to do with the fact that i felt too crappy mid afternoon that day to stay up and slept deeply for two hours. It is unusual for a nap to keep me up all night though.

Depression has been kicking my ass and I think I probably hit the point where I was as bad as I was in the days before I was first diagnosed. I’ve been to the doctors and am back on sertraline – 50mg a day though rather than the 100mg I was on until last year. Well, at the moment I’m taking half a tablet a day for a few days/week to wean on to it slowly. I actually ended up having to tell CAB a day in advance that I couldn’t come in so I could go to that appt (when I rung and got an appt with the GP I wanted to see the day before I wasn’t going to say no) but it’s a good job I did because I was so yucky with the UTI I’d have not been able to go in anyway.

But as I said there have been a few good things.

I was well enough to go to a show on Friday night – Stephen K Amos. Well, I still felt crap but I felt OK enough to go especially given I was only 10 mins from home so if I’d started feeling rubbish I could have got back easily.  He was good.  A funny guy and a good performer but not one of my favourites. I probably wouldn’t go and see him live again but I’m really glad we went as it was a good evening.

Today I went to Oxford and sort of met up with the NaNo group.  A new ish member and I had been chatting online and had agreed to meet up. And then a meet up was set up by someone else for the group. So I went in and found her easily and we chatted loads and enjoyed it. I did eventually figure out that the rest of the group (two I’d met once or twice and two I didn’t know) were over the other side of the Jam Factory but we were having quite a specific conversation which we were enjoying and they were writing so we stayed there.  I had a bit of time after she left and debated going over to say hi but decided against it as I didn’t have long. I got my book out and read a couple of pages then one of them came over and said “Emma?” and I joined them for 10 mins before coming home.  I enjoyed it.

So things may be looking a little brighter.  But there’s still a long way to go.

 

 

You Know You’re a Bookworm When…

You get an email from Amazon that someone sent you a gift card.

And the message from your friend is that she was going to send flowers to say thank you but she figured reading or free spending would be more appreciated.  She didn’t need to send me something to say thank you, I didn’t expect it. Just the words were enough

I would have enjoyed having flowers. They are always a rare but nice surprise. But my friend knows me well.  I’m definitely a massive book fan and they last forever or there abouts. So I’m loving that.  Currently trying to remember when a book I’ve been looking forward to is coming out (I think it’s a week or two) and if I can wait till then to spend it. Or shall I go poking on Amazon and see what I can see?

It was a lovely surprise and made me smile.

I sometimes tell people that I don’t finish every book I start because life is too short to read bad books. Unfortunately life is also too short to read all the good books. I’m making it my goal to read as many of them as I can though! So far this year I’ve read 71. And I shall use the giftcard to buy the books that may form part of books 72 and beyond in 2014 (am aiming for 100 this year having decided that last years 140 is a feat I don’t want to aim for again).

Sarah, Thank YOU!

 

The End of NaNo

So it’s the end of November and Nanowrimo ends at midnight.

I’m a nano winner in that I’ve written over 50,000 words this month.

I’ve not written a book. I’ve not even written anything vaguely like a first draft of a book. Some of my friends are talking about submitting for publication pretty much straight away. They are either much better writers than I am or totally insane. Or both.

What I’ve written is a mess. It’s a variety of scenes from the idea I had. Some I planned and some I didn’t. Some work and some make me cringe just to think of them. I suspect when I look back some of the ones I thought worked probably won’t and some that made me cringe will turn out to be better than I remembered. I hope so anyway.

I’ve also come away with the feeling that the idea I had is actually for two stories rather than two arcs in the same book. And that very possibly I’m using the wrong perspective and the wrong main character. I wrote a bit using the new main character on Thursday and again yesterday and I like it a lot. It feels like better writing. But I think I’ll miss the person I thought was the main character. Which is why I’m thinking this is two stories not the one I thought it was.

More importantly being able to lose myself in my writing has helped me deal with a very difficult month with major wheelchair problems, several very sad happenings and lots of stress.

Taking part in NaNo has got me back into the habit of writing regularly once again. And it’s reawakened my love of writing. I needed that.

NaNo for me isn’t about writing a book, or finishing a book or anything like that it’s about writing and the fact it makes me do it. And tomorrow I get to go drink cocktails with a couple of very good friends (one I met through NaNo and one I got to know better through NaNo but knew before) and a bunch of new friends to celebrate that fact.

Surrounded by Sadness

After I wrote the things that make me happy post on Saturday I’d planned to write some more on the subject. I will write more on the subject I’m sure but tonight sees me writing about the opposite of happiness.

Because there is a hell of a lot of sadness around me lately.

I heard of the death of a friend of mine and my parents yesterday.

It was I think the sixth death I’ve heard of in the past seven weeks. Plus my Dad was saying he and my mum know of two others who have died recently.

Two distant family members. For one she was in her nineties and I think it wasn’t unexpected. The second was unexpected and frankly in shocking circumstances.
A very vague acquaintance I’d not seen in years and who probably didn’t remember me
Two people within the wider challenger sailing community, one of whom I’d met briefly once or maybe twice but mostly exchanged a few emails with. The second I don’t think I’d met or at least his name didn’t ring a bell. But he was sailing when he died and I do know the person who was on the boat with him at the time which got me a bit…
And now our family friend.

Funnily enough mum and I used to quite often see him and his wife at the arts centre. We were there three times last week and I’d commented to mum that we’d not seen them for ages and I was surprised they weren’t at the talk on the power station. Then we went to Gyles Brandreth on Saturday and we saw his wife (we know them because she was my carer when I was tiny before I went to school and they used to visit us at least every Christmas until I was well into my teens) with who I assume to be one of her granddaughters. She was telling us about her husband. How he was poorly and in hospital but it sounded like he was in good spirits. We said “send him our love” or words to that extent. And then we went into the show.

And afterwards I was by the merchandise table waiting to get my book signed. She came by and looked at the books. Picked one up saying she’d get it signed for her husband because he’d been meant to come to the show with her. Joined the queue behind me.

Then mid morning yesterday my phone rang.

When my mum rings in the middle of the day in the week it’s usually something wrong or some sort of specific question that needs an immediate answer, often tech support for her computer. And I could tell it wasn’t going to be one of those situations where I’m on the end of the phone trying to tell her how to find something on her laptop and getting annoyed because it’s so obvious if she’d just look properly and she’s at the other end getting even more annoyed and declaring “stupid computer!” In the tone of voice she gets when she’s about ready to chuck it out the window.

And it wasn’t.

She was ringing to tell me of a trip to Tesco, of hearing that our friend had died and a long hug in the middle of the supermarket.

Yet more sadness. Like a bolt from the blue.

I’ve been dealing with a lot of problems lately. Wheelchair issues with both my manual and powerchairs, anaemia, the hospital transport disaster last week. I’ve been feeling crap. I’m run down I think and pretty stressed.

But at the same time all I keep hearing lately is about sad things. People struggling and so many deaths. I don’t remember ever hearing of so many deaths in such a short period before. And in a way that scares me.

It’s like I’m surrounded in the periphery at least by sadness and people struggling.

Am I sad? Yes and no. I’m sad about our friend who just died. I had a drink at the arts centre at lunch with some other friends. It was weird to think he’ll never make me jump again by appearing behind me in there to say hello. I was sad to hear of the other deaths too. But most of all I’m sad for all the people around me who are struggling because of that.

So as much as I planned to sit down tonight and write my follow post about things that make me happy, I can’t. Because happiness and sadness go hand in hand. And I needed to write about that sadness first.