As I wrote in my last entry, it’s been a year since things started to end due to covid. At first glance you’d think the last year has been full of bad things. I could (and maybe should) write about the fear and the worry and the difficulties. But whilst it’s not a year I’d like to repeat there have been some good things and moments I’ve enjoyed.

In many ways the best thing was it forced me to take a break from CAB and over stuff to slow down that I really needed but didn’t feel able to take. I was so stressed by that. The stress and worry about covid was huge even after that but taking the time to stop was nice.

I was forced to try taking my own stockings off (after buying a particular aid) and was able to do so – everyone who knew me thought I wouldn’t be able to do so. Also, there were concerns about the safety of me trying and injuring myself (in part due to the infection risk lymphoedema brings). Covid was the bigger risk so I chanced it and it was OK. I am having the carers at night at the moment but it gave me independence and I’d longed for since I went into compression. I am having the carers at night again now but the option is there if I want it.

Last August I met friends (who don’t live nearby( in a local village for a walk. I used to live there and back in 2004/2005 used to wander round a particular way. On our walk and on my way home I did that for the first time since I moved away in 2005. I had forgotten how pretty it is and really enjoyed it. I hope to go again this year.

The carers started coming slightly later of a morning. I still don’t get to sleep until I want to get up but several days a week I can sleep until 8 rather than 7 and it helps. I was saying to one of them recently that it’ll be a big change to shift back to earlier calls again. I’m not letting myself look forward to it but I’ll be glad to get up earlier again when it means I’m off to CAB or the gym first thing. Well, for the first few days at least.

I’ve enjoyed some of the walks we’ve done locally and discovering a few parts of my town (mostly a new ish estate) that I hadn’t before.

I’ve read a lot of good books, probably more than I would otherwise have done. And I’ve done other hobbies from home. It’s probably fair to say I spent a lot of lockdown feeling like I should be doing more of those things but enjoying what I was doing. I got a bit into plants in my house and outside.

One Year

For me it’s been a year since Covid changed my world.

One year ago yesterday (7th March 2020) my friend Carolyn got the train to Birmingham. We had lunch in Pizza Express, sharing a bottle of wine. We wandered into a few shops. Asked for sanitiser in Body Shop but they didn’t have any. We bought books (we always buy books) and I was beginning to look for a new handbag because mine was developing a small hole. I saw one I liked but it wasn’t exactly what I wanted so I left it as it wasn’t urgent yet. A year later I’ve still got the same pink spotty Cath Kidston bag I was looking to replace that day. It’s had so little use in the last year that the hole isn’t any bigger.

We then went to the theatre to see Book of Mormon the musical. It was great but I don’t know if was actually as memorable as it’s been or if that’s just that it was the last thing we went to. As we waited for the lift at the end we chatted to another lady who was waiting. It was supposed to be on for the rest of the month and she was saying she was going to get tickets to go again. I’ve wondered, on and off, if she managed to do that before it stopped it’s run early.

We got the train into New Street (via Oxford) but came home from Moor Street station (changing at Banbury) because I couldn’t get a wheelchair space on a train from New Street without a wait. I hadn’t been to Moor Street before but it was really nice and easier than New Street. I planned to go via there next time. But there hasn’t been a next time.

It annoys me that I can’t remember who was doing assistance at Didcot and Oxford that day. Because I miss the assisted travel team, a lot of those guys have been a part of my life for over ten years and I saw them often.

On the Sunday we got together as a family for the first time since Christmas. Rafe was at that stage where everything goes in the mouth and kept chewing on my fingers. I was completely fine with that.

The Monday I went to CAB as normal. I did some shopping afterwards. I stocked up a bit more than usual. For weeks I’d been looking for thin hair ties but I wanted them in black which they didn’t have. I gave in and bought the brown because who knew how much longer I’d be able to shop?

Tuesday I stayed at home in the day, trying to avoid unnecessary trips to town and watched a news special with Jenny Harries. It was the first time I’d heard of her and I’d still never heard of Chris Whitty. We went to the pub for dinner that night for a birthday. I haven’t been in a pub since.

Wednesday was back to CAB. It was quiet but I saw one client – something run of the mill and forgettable, only I’ve not seen anyone else since so she’s stuck with me. We chatted as a group something we don’t often get time to do. Several people had said they weren’t coming in for a bit. I told the supervisor I’d keep going but I’d stop if the schools shut.

By the Monday when I was next due in it was clear I couldn’t go back. A few days after I said I couldn’t go in I was sent a google form to fill in about why. I wrote that I hadn’t been advised to isolate but I knew from previous experience my disability meant I would struggle with coronavirus and be more at risk. A few hours later the list of clinically vulnerable was released and CP was on it.

That same Wednesday evening I went to my photography course. I’d planned to go early and pop into Wilko but was late leaving so couldn’t. I really wished I’d made the effort in the weeks that followed. The final weeks of that course were cancelled.

Thursday I skipped Shut Up and Write on the grounds of avoiding unnecessary trips to town but in the evening went to a writing workshop five minutes from my house. Several others weren’t there because of the risk. There were tissues on each table that weren’t usually there and talk about “if the last week would happen.” It didn’t. As I worked with my friend on one of the exercises I could feel her breath as she talked. It bothered me in a way it hadn’t before but I didn’t say anything.

Friday was the gym. My parents came down to do some jobs in my flat while I was out but got there before I left. They wore gloves and it made it real. I looked around the Fit Zone as I left feeling a bit unreal. I told my trainer I wasn’t sure about the next week and she said she hadn’t taken it seriously until the day before. Dave, my most regular driver, dropped me home and said “hopefully see you next week.” I can’t remember what I said.

But that was the last normal day I had. When they were talking about 12 weeks it seemed unachievable. I can’t believe it’s now been a year.

February Reading

I spent a fairy big chunk of February not reading and then the last few days of the month reading a lot. In addition to the books listed here I listened to several hours of another audiobook but got bored of it. As before, books marked with a * are from Boxall’s 1001 books you must read before you die lists so count towards my goal of reading 40 more of them before my 40th birthday.

  1. Fighting for your life: A paramedic’s story by Lysa Walder
  2. Vinegar Girl by Anne Tyler
  3. The Switch by Beth O’Leary (audiobook)
  4. The Woman in White by Wilkie Collins*

The Switch was probably my favourite this month although I think I preferred O’Leary’s first book, The Flatshare, more. Fighting for your life was my least favourite, I liked it but I prefer memoirs where you learn a bit more about the person writing it and felt like I wanted longer stories.

So far this year (according to Goodreads) I have read 10 books or 4194 pages.

Had Enough

I have had enough of covid and not being able to go anywhere.

I’ve had enough of having nothing to say when people ask “what news have you got?” or “what have you been up to?”

I’ve had enough of people asking if I’ve had my vaccine yet and moaning when I say no that it’s wrong, I should have been prioritised because I have carers coming in. I mean, I agree that home care users should have been prioritised along with people in care homes but it is what it is and I’m in group six anyway which is ongoing in some areas and about to start in all others. How does you moaning at me about it help? At least I am in a priority group, so many other disabled people aren’t.

I’ve had enough of hearing how it “only affects the vulnerable, old people, disabled, people with underlying conditions.”

I’ve really had enough of people telling me how they are exempt from wearing a mask but they are wearing it because they know I want them to. If you can wear a mask you’re not bloody exempt.

I’m fed up of people telling me they “feel for me” and they “know how hard it is.”

I’ve had enough of being asked if I should still be having the carers coming in.

And I’m bored of reading posts from people saying when they schools go back/after Easter/some other arbitrary date they are “done” and are going to stop social distancing or wearing masks or whatever. Some of us aren’t going to have that choice.

But the thing I’m really, really done with is ableism. Because so many of the things I’ve listed in this post are ableist (Nina Tame posted a really good video about that on Insta). And sadly as much as I think covid could be controlled in some way and life at some point will become more normal, I’m not sure the same can ever be said about ableism.

Things I’ve been making

I am trying to complete a Make a Thing a Day challenge this month. So far it’s going well. I suspect the momentum might be tricky to keep up as the month goes on but at the moment I’m enjoying the creativity..

In the eight days gone so far I have six complete makes. On the other two days I did parts of the same project as the facebook group says distinct parts of a larger make count. Some of the makes feel a little bit of a token gesture.

Here are a few photos

A lego E. I wanted to make a heart but couldn’t figure it out so I made this instead. This was what felt like a token gesture but it got over 40 likes on facebook, the most of the makes I shared.

A page from one of my colouring books. I thought it was flowers but now I think it’s more abstract.

A photo of one of my succulents that I took them edited in Snapseed. I like how dark and moody this is.

Today’s make. A bright pink heart using t shirt yarn and a 10mm hook. I’d like to try making a bigger one.

January Reading

In previous years I’ve occasionally tried to post here about what I’ve read. But it’s something I’ve struggled to keep up regularly despite wanting to. I thought this year I would post a list on the 1st of each month of everything I read in the previous month.

Books marked with 1001 are from Boxall’s 1001 Books To Read Before You Die list and so count towards my goal of reading 40 more books from that before my 40th birthday.

  1. Serpentine by Philip Pullman
  2. Children of Time by Adrian Tchaikovsky
  3. A Promised Land by Barack Obama (audiobook)
  4. Children of Ruin by Adrian Tchaikovsky
  5. The Circle by Dave Eggers (audiobook, 1001)
  6. The Minute I Saw You by Paige Toon

One of my vague reading goals for this year is to read longer books. I’ve read some very long ones this month – the Obama book is 750 pages, three of the others are 500 pages or more. I’ve also read what will almost definitely be the shortest book I read this year (Serpentine, which is very small in size and has only 80 pages).

The Circle and The Minute I Saw You both have disabled characters. Although I did wonder if many readers will have associated the word disabled with Hannah, the main character in The Minute I Saw You (she has a permanent limp which is mentioned several times).

A Promised Land was my favourite this month, it was so interesting. President Obama reads the audiobook himself which added to my enjoyment. Serpentine was probably my least favourite. As much as I’ve previously enjoyed the His Dark Materials world, this did leave me not sure what the point of it was…

In 2021 to date I have read 6 books or 2893 pages.

40 Before 40: Pandemic Edition

My 40th birthday is at the end of this year. At the end of 2019 I wrote a “40 before 40” list of goals to achieve before I reached that milestone. I blogged about that a little bit but never shared the list online

I did achieve three of the goals last year – I went to see Book of Mormon and did a photography course before the pandemic hit. I also manged to use my manual chair every day for over 40 days later in the year. Looking at the list as I write this, I could also be said to have done two more – I attempted to make button art at Christmas but it didn’t work out (I have plans for a different button art project) and whilst I didn’t make it to a writers retreat, I have done a couple of online retreats.

But there were several overnight trips in that 40, and even more one day trips. Most of those are currently out of reach. And to be completely honest I’m struggling with motivation to get things done at home at the moment. So a lot of the habit forming ones such as “write everyday for 40 days” feel unachieveable.

That said I didn’t want to give up on the idea of 40 before 40 entirely. So at the end of last year, I came up with two slightly simpler versions of the 40 before 40 goals.

I occasionally crochet squares for Woolly Hugs. This year I am aiming to crochet and send 40 of the 12 inch ones. I’ve already done two which will be in the post next week.

Also, for years I’ve been occasionally reading books from the 1001 Books You Must Read Before You Die book (I have a list of all the books that have been in each edition and read from that – it’s about 1300 when you count removed books). This year I want to get back into it and read 40 books from the list. I’m in the middle of listening to the audiobook of The Circle by Dave Eggers from the list now.

If I could manage to do more of the “at home” or low key goals from my original list that would be good, but the crochet and the books are what I’m actively planning to do write now.

And perhaps at some point when life looks something a bit more like normal I might start a 101 in 1001 list with the tattered remains of my original 40 before 40 list. It’s quite a long time since I’ve done one of those…

Thing a Day February

Several years ago – searching on my blog suggests longer ago than I thought – there was a non-defunct website that ran a “Thing a day” challenge in February.

The idea was to make something – from scratch – every day in the month of February. I tried it in two years at least. And I didn’t manage to do everyday either year. But I remember enjoying it. Then the website changed and it got harder to participate and eventually it disappeared.

As all things do it slipped my mind. Then for some reason as I wandered the scenic route home from podiatry this lunchtime, trying to avoid the dug up path, muddy mess of roadwork hell, it popped back into it.

I googled it and there is a facebook group devoted to the challenge. I’ve requested to join and think I might attempt the challenge again this year. The group description suggests “Aim low. Fold your napkin into a shape, draw a face on your thumb, doodle on a post it note. Or aim high: make time to decorate a household object, pursue your art, cook a masterpiece, do an art journal page. Just do it! “

I doubt I’ll manage to make 28 separate things but it’s not impossible. Certainly the smaller, simpler crochet squares I sometimes make for charity are usually a one day project for me. And I was thinking of widening it out/changing it to “do something creative” so writing counts. I always thought it did but reading the facebook description, maybe not. Still sometimes it’s worth being a rebel.

I mean I would like to end the month with something more than a pile of granny squares and a folder full of new flash fiction. But if that’s all I came up with it would still be a useful experience.

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.”

It is a truth universally acknowledged…

…that I can cope perfectly well at home not going out when I’m not going out because I don’t want to. But the minute I’m stuck at home for the foreseeable for reasons beyond my control I get cabin fever.

Haven’t been out since New Years Eve because of my cold. It’s well on it’s way out had decided to do the full 10 days isolation just in case and was planning to go for a walk probably tomorrow. I’ve been happy at home working my way through a long book and an even longer audiobook and playing games on my iPad. I didn’t really have an enthusiasm for the idea going by the weather but figured I should probably go out occasionally. Then the care agency called last night.

The carers are having weekly covid tests and one of them came up positive. I’ve been identified as a close contact and need to self isolate until next weekend.

And all of a sudden, I’m bored.