Merry Christmas!

I haven’t managed to get back here since I wrote the last entry and finish any of those half done blog entries. They are still on my to do list to finish at some point.

I’m not feeling hugely Christmassy at the moment but there have been moments of festive joy over the last few weeks. Sometimes I think I put too much pressure on myself to watch all the Christmas films, do all the Christmas crafts and read all the Christmas books. So I’m trying to take a step back and enjoy what I have done, rather than worry about what I haven’t. And I’m really looking forward to seeing all the family on Christmas Day.

But I did want to get here before Christmas and post something to wish everyone that reads this (I’m not sure who still does) a very Happy Christmas. And of course I send my best wishes for 2021, may it bring everything people want. Most importantly I hope we all get our vaccines soon and get to be out and about again living as we like.

I’m really good at starting things…

But rubbish at finishing them. I’m also good at saying I’m going to do stuff but not actually doing it. Those are things I don’t like about myself and they seem to have spread to my blog.

About two weeks ago was the three year anniversary of when I started wearing compression. I started writing a blog about it that morning, ran out of time to finish it and planned to return that evening. Then I got a but frustrated around carer stuff and ended starting to write another blog that evening about having carers (not the specific frustrations). I haven’t finished writing that either. I plan to finish writing those, I really do. But everyday slips by and I don’t get them done.

In my drafts I also have the beginnings of an entry with the working title “Good Little Crippled Girl” which was going to be about being independent and how asking for help was the hardest part of the fall I had in October.

There’s Ode to a Granny Square which needs no explanation as to content but that was one I started thinking about at the end of September.

The 5th draft blog post I have (although they aren’t in the order I’ve written them here) needs a different title to it’s current one if I finish it. It’s a topic that’s been rearing it’s head since I started in compression, about how I want to be supported (emotionally/mentally/physically) versus how people want to support me. I can’t remember when I started writing that but it’s a topic that’s been back in my thoughts for the last week or so as it’s been a bit of an issue again.

Drafts 6 – 10 are all things that I ended up restarting, including in other blogs and/or are no longer relevant (like the two posts about my last two lymphoedema appts which were in April and Sept)

There is no draft 11 but there is an idea I’ve been toying with for months.

So I think it’s probably fair to say that it’s not that I’m not blogging at the moment, it’s that I’m not publishing blogs at the moment. I hope to change that soon but I’m not quite sure where to start…

40 Before 40 – Use My Manual Everyday for 40 Days

At the end of 2021 I turn 40. So at the end of last year I wrote a 40 before 40 list (it’s not on this blog before anyone goes looking).

I always thought that with the number of trips away it would involve I wouldn’t manage all 40 tasks. But that it was good to have aims and I could probably manage a fair number. With the current restrictions I definitely won’t manage most of them because even the one day trips are out of reach.

I might write a new “pandemic edition” 40 before 40 list to start after I turn 39, I need to have a think about it. But there are still several I can reach from the original list. And I recently completed one.

Use my manual chair everyday for 40 days.

It’s actually well over 40 days. I’ve used it most days since it was serviced right at the beginning of August. And I’ve used it everyday since 19th August when my powerchair went in to the workshop.

My mum had been moaning at me for ages that I needed to start using the manual more. But it turns out what I really needed to make me do it was the powerchair tech pointing out that the reason things like casters keep wearing out is because of all the tight turns and small movements around my flat which it isn’t really designed for. That and yet another repair bill of over a grand for the powerchair.

I’ve been in it for every morning care call since the 20th August, even asking carers to wait and minute or two for me to transfer out of my powerchair into it. I had yet more problems with the gas strut in the powerchair which is part of the reason it went to the workshop. And I think part of the reason I’ve had those problems is the amount of force needed to do my compression. To start with I was trying to be in the manual for all care calls but some evenings I’m back in the powerchair again now.

Some days I’ve only used the manual for an hour or so around the morning care call (which is 30 minutes). And a few days lately, when the weather has been bad, I’ve not even touched the powerchair. A week or so ago I was at home all weekend and in my manual from Friday morning until Monday afternoon.

It’s definitely getting easier. And strangely I’ve noticed my feet and legs are sitting on my footplates better the more I use it. I still don’t think getting out and about it alone will happen. But in the house definitely is.

I’ve started having some shoulder pain in the last week or so which is concerning (this is something wheelchair users need to be careful of) but as it’s mostly one arm it’s been suggested it may actually be crochet related. I’ll need to keep an eye on it.

And this is really bizarre but it’s beginning to look like my next wheelchair tech visit will need to be from the NHS wheelchair services team to give my manual some TLC. It’s a long time since I’ve seen a tech for this chair!

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!

Another of those stories

A couple of years ago I wrote about discovering I’d become one of the stories my wheelchair supplier tells. A tale of a disaster that they sorted and makes them look good. (And I was thrilled with the way they supported me with that) I’d hope two years later that someone else has taken my place in the stories rotation. But sadly I suspect I’ve probably just edged my way back onto the list.

Because less than a week after it was in the workshop for routine maintenance (and after I told a new tech who dropped it back that “I’ve stopped saying see you soon instead of goodbye to the wheelchair techs…”) it broke this afternoon.

It broke in a way that it never has before and I can’t really explain how or why. I was doing a move that I do multiple times a day with a part that is supposed to move like that. I thought “this feels loose” And then it was in two pieces.

With a dark rainy day meaning I was stuck in and a bit of a stressful morning it was already a rubbish day and this obviously made it worse. And this whole week has been a nightmare with me getting trapped outside my house for two and a half hours on Monday due to a broken lock.

But I do have the say that the moment when I was on the phone to one of my usual techs about my chair and we just had to both agree that this is a very me thing to do was a brief amusing highlight. Because he didn’t know of anyone whose broken a chair like that before. And all I could say was “But this is me, I am the one who breaks her chairs in ways you’ve not heard of.”

I do have a reputation to live up after all.

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.

Four Months of Isolation

It’s been a fair while since I wrote one of these “life in lockdown” posts and it’s definitely something I’ll want to look back on in future years so here’s another one. I just put the washing on for an extra rinse so we’ll see how far I can get before it finishes.

Monday was 4 months since I was last in a building other than my house (I went to the gym on Friday 13th March). I’ve probably written this before but although the panic buying that weekend would have made it unsafe for me to go out, I probably would have gone to town in the week after for more supplies if I’d known it would have gone on this long. I’m not sure I’d really have needed them but it feels like I should have done it.

Some hints of normality have snuck back in over the last few weeks.

The carers are now coming three evenings a week as well as the mornings. They are trying to keep it to one specific carer for the evenings or someone I’m already seeing in the mornings. They are managing that but having an evening carer really didn’t work very well for the first few weeks. It’s working better now they’ve changed who is coming but they are still turning up really early (several times an hour early) on a semi regular basis which is tricky. I keep changing my mind between just stop it again, permanently this time, keep it as it is and up to it five evenings. I can’t imagine going back to every night right now just because I like the independence.

The supervisor from the agency also came out with one of the morning carers this week to do what I’ve previously known as a spot check. They didn’t do any during lockdown so it was the first one. It’s done slightly differently to previous agencies but it was good to get it done and have a conversation between the three of us of how things are going. I continue to be very pleased with how well it’s working since I changed agencies. If I’m completely honest, as much as I miss several of the actual carers I had before but I wish I’d changed to this agency much sooner.

I’ve visited my parents house and sat in the garden several times since I last updated (and been for a couple of other walks). We had the entire family there for pizza at a distance early in June. I hadn’t seen any of the family other than my parents since then. But yesterday they had Henry for a few hours and I popped up to see him. That was fun to hear his take on things and see him chasing around the garden doing challenges I set him. He has an interesting press up technique and is good at walking like a crab.

The other hint of normality is that a new wheelchair accessible transport provider came last week so I could try getting my chair in their vehicle. That worked better than expected given problems I sometimes have with that. I plan to see friends in a few weeks and I might use them to take me to meet my friends near a local walk (one that I can walk home as part of).

Sadly, there has been some pressure from a few people for me to get back to normal quicker than I am and “balance the risk to my mental health”. In the case of one person it’s felt like no matter what I do, I’m doing lockdown wrong. It’s upsetting and frustrating to have to deal with that. I have a plan for getting more back to normal and am quite happy with things the way they are.

Some of the pressure to get back to normal is made doubly ridiculous because it’s already my normal, it’s not corona fear. The friends I’m seeing in a few weeks, I’m being told I could meet now. But they live a drive away and the date is the first one they could do. Visiting my parents in their garden has been our normal way of doing things for years because it’s easier than being helped up the steps. I basically only go in my parents house if I’m going to be there most of the day or other people are visiting. This is possibly a topic I should blog more about.

Otherwise I continue to read a fair bit (I’m up to 27 quarantine reads I think, must update on that). I’m not reading as much because I’ve been crocheting more though which I’m really enjoying.

“But what do you do in a crisis?”

I am something of a fussy eater. Much better than I used to be but still not great.

Two things I don’t like are tea and coffee. It doesn’t bother me, I’m more than happy to go to a meeting and drink water or get a coke or some juice in a coffee shop or whatever. It’s probably one of the least problematic of my dislikes. Because you just order something else. But it’s also a dislike that a lot of people find hard to get their head around. Why don’t I like it? I just don’t.

Years ago, someone I volunteered with went to get herself a tea and she asked me about not drinking tea. In all seriousness she asked me, “If you don’t drink tea, what do you do in a crisis?” Because whenever anyone came to her with a problem, the first thing she did was put the kettle on. It was something concrete to fall back on.

I can’t remember what I answered and how the conversation went on. I just remember finding the whole thing a bit of a non issue. If someone came to me with a crisis, I’d just help them deal with it to the best of my ability. And if a drink were required, I find alcohol much better in those circumstances than hot drinks.

A couple of people have been in touch over the last few weeks with crises. Thankfully, not corona related but still scary and unsettling for them.

And it made me think about conversation again. She’s no longer part of that organisation and we were never friends outside of it so have lost touch. If we were in touch however I could give her a much better answer.

It turns out, the first thing I do when dealing with a crisis is reach for my crochet hooks.

Because tea lasts a few minutes. Crochet is forever.

Value for Money

One of my carers has asked me about two things I’ve bought lately (a stocking aid and some cloth masks) and specifically how much they’ve cost. When I’ve said “about X pounds” she’s said that’s very expensive.

I’ve been thinking about that a lot since we had those two conversations. I think she’s wrong. But only because of the bigger picture.

The mask conversation was almost irrelevant. She’s told me how much she paid and said delivery was more. I didn’t pay delivery. Hers came from somewhere abroad (I forget) and took ages to come. Mine were here in a few days, from (I think) London. She wasn’t comparing like from like, even before you get to the fact that knowing it’s difficult to make a fair amount of money as a crafter, I was prepared to pay a bit more.

The stocking aid (one specifically for taking them off) was £22.40. Although I just had to look that price up and had told my carer it was “about £20” I thought that was very fair, particularly given that as soon as you put the word “disability” on anything it goes up in price and that the market for stocking aids must be a niche market within that already niche market.

But.

I’ve spent the two and half years since I started wearing compression hating having to have the carers twice a day. Hating the time I lost and the tie of always having to be home/free/awake at those set times and feeling like who I was, Emma, was getting lost in the wash of the woman with lymphoedema who needed this doing to her. It had a real negative thing for me and was part of the reason why my mental health was in such a downward spiral when I started needing compression.

Everyone who knows me and my history and my level of mobility (and the amount of problems I had when I used to wear normal socks let along compression stockings) was sure that there wouldn’t be a way of my getting them off myself. The lymphoedema nurse thought getting the stocking over my heel was going to be an issue.

Eventually coronavirus hit and the risk of my injuring myself trying to get my own stockings off was less than the risk of having the carers here twice a day so much. Very long story short: I got one in the hope I could go to once a day calls, it worked. It took some trial and error to find the easiest way to do it and it takes ages (but I’m getting quicker!) and in two and a half months I’ve probably had support to take my stockings off less than ten times.

Starting next week I am actually going to have a carer three evenings a week because applying my cream myself is still tricky and I think it needs doing better more often than the once a week or so Dad was doing it. But I don’t currently anticipate going back to having a carer here twice a day, everyday.

Should life ever go back to normal there will be no more leaving things early to be home for the carers or planning how I will manage to get my compression off if I go here. Or not going to things because I can’t work round an evening care call. Without being able to go out I’m already eating dinner when I want, sitting outside losing track of time for hours of an evening. Once the morning carer goes, my day is completely my own. I’m thrilled with that.

My carer has looked at it and seen a simple looking thing I can use to take my stockings off. But she’s missing what my being able to take my own stockings off means to me. And £22.40 strikes me as amazing value for money for something that’s changed my life.

A Month of Reading

It’s nearly a month since I last updated on here about what I’ve been reading. And there’s a fair amount of books to share about. There’s also quite a few I have read part of but not finished which I won’t list.

On VE Day I started reading a series of books set in the Second World War. Those were Quarantine Reads 12 – 15. I read the first one cover to cover in one day and finished book 4 in the series a week later. I enjoy books set in that period as it’s one that interests me and the books tend to be quite character driven rather than gritty. So reading them felt like a good way to have a relaxing bank holiday but also mark the occasion. This time it was the Rationbook series by Jean Fullerton. The books are A Rationbook Dream, A Rationbook Christmas, A Rationbook Childhood and A Rationbook Wedding. I found the first one took my a while to get into and I had to persevere almost but I was glad I did. Once I got into it I liked it and I enjoyed the later books in the series more. I hope there will be a book 5.

Book 16 was Spitfire Girls Fly For Victory by Jenny Holmes. Not the best book I’ve read mostly because the first one in the series was better (although now I write this I wonder if the problem was that with almost a year since I read that I didn’t remember the characters that well). But I did enjoy it and I’ll definitely read book three when it comes out later in the year.

Interestingly I read the first book last August when I was housebound due to my powerchair being broken. And I read this one before I started going out for little bits (I’ve since been to the post box, the park and my parent’s garden) so I was housebound then too. I hope not to be housebound when book three comes out!

Next I read The English Agent by Claire Harvey which has been sat on my shelf for an embarrassingly long period of time since a friend passed it on to me (it was a stupid long time before lockdown but luckily she understands). I discovered part way through that this is actually book 2 featuring the main character. I don’t think not having read book 1 made any difference to my enjoyment or understanding. I wont read book 1 any time soon because there were enough snippets to have a good overview of the plot and so it would be spoiled. Which is a shame because I might have enjoyed that more.

Going back to The English Agent itself, I would say it was OK. Part of the problem with my enjoyment was probably my mood in that it was getting a little flat at that point (looking at the date of my Facebook post about the book). But the other side was definitely that it just suffered from my having read so many war books in such quick succession.

Last week I read two books, each of which I read cover to cover in one day. And in the days in between I tried to read another book which has a premise I love but I just couldn’t get into it because I had a book hangover from the first one.

That was To Be Taught If Fortunate by Becky Chambers. Back in summer 2018 I was in a huge reading slump and her (then) three books were the ones that broke it – I read them all in 9 days, making two special trips to book shops for books 2 and 3.

So I was so excited one evening last September when I spotted To Be Taught If Fortunate in Foyles on a night away. And then immediately disappointed and put it back on the shelf. when I read the back and discovered it wasn’t part of the Wayfarers Series. I would still love another Wayfarers book (and a friend tells me one is being written) but after getting it for my birthday and few months later, then leaving it on my shelf for a few months after that I picked it up and read it.

I was wrong to be disappointed by that and also by how short it is. Because when you read the book, it’s just brilliant. Really well crafted and a powerful read. It is really short, and I definitely wanted more. But that said it’s pretty much the perfect length. I think to find out what happens next would probably have ruined it, despite my curiosity.

Next I read So Lucky by Dawn O’Porter. I read another book of hers, The Cows, last year. I’d read the back and liked the idea of The Cows but been put off by her fame (I’ve read other books by famous authors that weren’t good, just clearly published because of who they were) but when it came up as 99p on Kindle gave it a shot. And loved it, read it cover to cover in one day.

So when I heard about So Lucky I was really keen to read it. And I also really wanted to read it in one day like I had The Cows (some authors are “book in a day” authors for me) so it had to wait for the right time.

So Lucky is a story female friendship and the lies we tell ourselves (and others). It was well written, really honest, punchy and slightly gritty. Not your standard chicklit as it was slightly more in depth and unpredictable. And definitely not a case of a famous person having a mediocre book published.

Finally (for now) I read The House at Silvermoor by Tracy Rees. My Mum had asked me to get her a book for her birthday back in May and I added this and one other for me to the Waterstones order. I’ve had a lot of new kindle books (either bought or via NetGalley) since lockdown but it was really nice to have a new physical book. There’s just something about the feel and the smell of a brand new book that I really love.

This was another historical fiction book set in a time and area (1899, early 1900s, Yorkshire mines) that I know little about. So I enjoyed the chance to read about that and also the dual narrative of the story. It kept me guessing throughout (I was sure I knew what was happening but didn’t) and was just another stunning read from Tracy Rees.