Life in Lockdown

I feel like I need to update and write about what life is like at the moment because I’d probably like to have the record in future years. But I also feel like there isn’t a whole lot to say.

There’s no “what I’m reading” post this week because I’ve been reading the same series since last Friday and I want to post about them all at once. I’m on book 4 now which is currently the last one but I reckon the author will probably write at least one more.

I left the house for the first time in almost two months on Tuesday to go say Happy Birthday to my mum in person. I sat outside her house for a little while (it’s big enough to social distance). It felt OK actually and my powerchair managed it. I had been worried about managing to social distance when my chair means I can’t suddenly move into the road or on to the grass (in some places). And I’d also been worried about how the batteries on my chair would cope without having a proper use other than around the house/garden for so long. But there weren’t any problems. It is a relatively short distance though and I didn’t see anyone, things might change if I went a longer distance or it was busier.

I was really surprised by the colour I saw as I went past the park and also in the plants my parents had. I had been picturing the bare, beginnings of spring that there was back in March when I last went out (I don’t really have any plants in my garden). It shouldn’t have surprised me but I obviously hadn’t been seeing it and it just never occurred to me.

Getting food seems to be working quite well now, it was really stressful initially as I don’t qualify for priority slots and it still worries me but it’s working out.. I’ve had an online slot every week or 10 days at most since the 24th April. But I had quite a long gap before that (about two and a half weeks). I was getting a bit worried as the last slot I had was this coming Sunday and I couldn’t get anything else. It was looking from Tesco that it would be well into June and I was staying up until midnight to book and not being successful. However I then got an FB message from my mum on Weds saying there were slots (immediately followed by a text from Dad saying “Mum says….”) and I was successful.

I feel like I should be doing more with my time however at the same time I’m very content with what I am doing. There’s a lot of content and things to do and I want to do some of them but others times I just want to do my own thing. I’m also coming to the conclusion that I prefer zoom calls with only one other person or maybe two or three, not big group ones.

A friend and I were talking about that and we came to the conclusion that we both feel a bit like that because we live alone and in both our cases at least part of our people have always been a distance away (some of her family live abroad and most of friends don’t live in the same town as me). So we’re used to our own company, keeping in touch from a distance and doing our own thing.

I’ve made two finished craft projects since March (a knitted scarf and a loom knit hat), crocheted part of a blanket and several granny squares. But initially I planned to make a square a day until I had enough for a blanket, and finish the whole blanket.

I’m writing a bit but again not as much as I hoped to. And the same with reading. And using my motomed

I’m happy with everything I am achieving but sometimes I feel like I’m not doing enough. I am trying to remind myself what I have done however.

Wednesday was quite a flat day – the first one for a while. Overall I’m coping very well and surprised to find that’s the case. Personally it seems as though this is going to be the situation for a long time and I do wonder whether it will still be as easy on cold dark December days if it comes to it. But I focus on the next few weeks and the rest of the year will sort itself out when it comes.

Snow Days

 

Day two of my being stuck in due to snow/ice is coming to an end. It’s definitely melting but the paths right outside my house were absolutely covered in ice today. As much as my chair may well handle it for the short distance to the main road (which I suspect is clearly), it’s not worth the risk.  I may get out tomorrow if it’s improved a bit, I may not.

 

Snow is something that worries me. It’s pretty to look at but it’s also pretty damn inaccessible.

 

For the last several years I’ve often stressed myself in winter working on the panicked idea that I had to get my prescription as soon as it was ready. And that food shopping needed to be got pretty much immediately. There could be no waiting for a few days to replace the cheese (even if I didn’t need it straight away) because what if it snowed and I couldn’t get out for days on end and not having cheese became a real problem?!

 

It was never a real problem because I have family nearby and they would almost always be available to get anything I needed in a real crisis. And not having cheese would mean I missed out on some yummy meals but never become a real problem. (Med on the other hand…)

 

The biggest issue actually is my difficulty in asking for help. And how hard I find it to lose my independence. The unending sight of snow with no idea when I might get out again was a huge problem too because if you know you’re stuck here for three days you can cope. If you know you can get out if you want to but it’s difficult it’s copeable. If you use a wheelchair that might not manage the snow and there’s no definite end in sight it’s different.

 

I’ve been trying over the last year or so to be slightly less panicked about needing to do things immediately just in case.

 

I shopped Wednesday and grabbed a couple of extra bits due to the forecast but then realised when I got home I needed bread. As I was near Sainsburys on Thursday I picked up bread and a few extra bits again. I knew I had everything I needed for several days and if it snowed I’d be fine.

 

I was right, I’m absolutely fine for food and meds and everything even though I haven’t been out for two days.. I have enough bread etc to keep me going tomorrow and Monday, possibly Tuesday. Realistically the freezer and my cupboards could feed me several days after that but my meal choices may be slightly unusual.

 

But when I left the writers workshop on Thursday night as the first flurries of snow fell I felt panicked. I regretted that the workshops have changed venue. There is no shop near where they are now held but the big Sainsburys is a couple of minutes from the previous venue. I had a strong, strong urge to go and do a panic shop before I lost my ability to go out. To run round sainsburys picking up things I knew didn’t need but didn’t feel I could run the risk of not having.

 

I don’t even know what I would have bought, I just really felt I needed more food in the house because it was snowing. Things that it would make me feel better to have but would very possibly have been doomed to go uneaten.

 

My head knows I’m fine. That the snow will go in a few days and I’ll be out and about again – possibly even as soon as tomorrow. But my heart isn’t so sure.

Snow Days No More

I started writing a blog post on Thursday about how it was a snow day and what I was doing (mostly crochet and audiobook that day) but then my carer came and I saved it to drafts and never went back to it. And now it’s Sunday and it’s finally snow free and I’m out of the house for the first time since Wednesday. So this entry is now snow days no more.

If memory serves there were no stuck in the house due to snow days last year. Which is good. I think maybe I coped better this time to previous snowbound times. I don’t know why that is. It might be the fact that I panic shopped a lot in the days before. It might be the fact I made a conscious effort most days to not be on the Internet for the whole day without a break (crochet and audiobooks featured heavily most days but mum also came round yesterday and helped me have a sort out). Or it could just be having a carer in twice a day meaning I saw people – I’d like to think that’s not it but it could play a part.

It’s just damned annoying that I ended up missing two shows due to the snow and am now out and about again with nothing big planned for this week. But such is life.

Spotted at the Sailing Club

There are, perhaps, five Tuesday evening sails left this year.  I personally suspect only four but five is most likely and the most it could be is six.  Although the person who runs sailability always says when asked “we try to keep sailing until the clocks change” I think I’ve only ever sailed in October once.  In a way I look forward to the off season and what that will bring – I have a couple of very exciting things planned for October and later in the year.  But most of me isn’t ready for the hot day, sunshine and sailing to come to an end.  How can it be practically September already?!

It’s been a good year for sailing – very few have been cancelled due to the weather, although there have been one or two where sailing has run but I’ve chosen not to go on the water once I’ve seen the conditions.  But as much as it has been a good year I did go through a real spell of feeling like I lost my confidence in sailing and had to fight to get it back.  That was more of a trust/anxiety thing than because of any particular bad experience and as much as I could go into the exact in and outs they aren’t really relevant any longer and don’t matter.  In the last weeks conditions have been gentler and the sun has been shining and slowly – very slowly – it’s been coming back and I’ve been finding my enjoyment of the water once again.

A big part of it was a general loss of confidence (and higher levels of anxiety) that I seemed to experience when my powerchair broke and everything shifted in my life unexpectedly as a result of that.  Sailing confidence is back but I’m still working on my confidence in the new powerchair.  It will come, it’s just taking longer than I’d like.  I do think that I’ll always struggle somewhat with anxiety and confidence though and especially with sailing because by it’s very nature it forces me to do something that can be a huge trigger for me (I tend to find it very difficult to feel safe if I’m not in my wheelchair).

And tonight I got to watch another gorgeous Farmoor sunset.  In the past couple of months I’ve mostly been getting lifts from my Dad so I’ve not seen many as we don’t stay for a drink after meaning we’ve been away before the sunsets.  But tonight we did – and Dad fished my phone out of the car for me to take some photos.

Sunset over Farmoor Reservoir

Boats in silhoutte as the sunsets

Quiet

I’ve been so quiet on here and on facebook (and probably quieter than usual but not totally quiet on twitter) that a friend actually text me this morning to check I was OK because she was worried. It probably doesn’t help that I’ve also not been reading so Goodreads updates haven’t been auto posting. (Pro tip: it’s only when I go totally quiet on twitter that you need to worry. My heart belongs to twitter more than any other social network except maybe instagram)

I’m OK.

I just haven’t had a lot I feel like sharing lately.  I’m pretty stressed about a few things and I’ve had several pieces of bad news about other people which has hit me a bit. I don’t think depressed is the right word but it almost feels like I’ve had a persistent low level depression for a week or two.

But I’m hanging in and I’m OK.

I was at CAB this morning and now I’m not there again for nearly two weeks. I’ve also told some other people I do voluntary stuff with that I won’t be too available. It’s time to recharge my batteries.

I have a few fun things planned (and there’s a lot of time on trains involved so hopefully that’ll make me read again). And in the between times I plan to spend a lot of time watching DVDs, knitting, doing decopatch, lying on the sofa and reading.

 

Safe Space

A couple of weeks ago, a new collaborative blog – Safe Space – was launched.

For the past year or so I’ve been unconvinced by the concept of “safe space” on the internet – a space where people can be free to share/be who and what they are completely without fear of abuse, hate, ridicule, triggers or trolling.  It seems like too big a goal both with how massive the internet and it’s trolling problems have become and the fact that for some people what is acceptable and OK can be what’s triggering, abusive or upsetting for others. Online (and in person) safe spaces are a worthwhile goal and one that is needed but the implementation seems problematic to me (especially when some communities like the disability one can’t even agree on what’s the correct language to use)

But I completely agree with the idea of Safe Space, the blog and I’m pleased that I’m going to be part of the team.

Jess, who founded the site wrote:

Here at Safe Space we understand that it’s hard as f**k being a girl. Periods, sexism and trying to put on eyeliner can be all in a days work.

Safe Space is a place where a group of women bring you posts about trying to hold their shit together. Talking honestly about mental health, feminism, sexuality and other important life stuff.

No judgment, no hate, because it’s already tough enough being a girl.

I’m going to be posting there every other Friday.  I had a fair amount of self doubt about doing so but the other writers are a  brilliant, friendly and supportive bunch who have been very encouraging and supporting. And I’m really enjoying the posts that they have shared.

The first week the site launched we each shared – What Makes Me, Me. That was a tough subject to write about as it needed more than a bio. But I think most of us found that.

Mine turned out to be a little different than planned. I had it written and then on my way home the night before I realised I needed to make a small tweak. Then when I logged online I saw an old school friend had died and ended up making more changes than I had planned.

What Makes Me, Me – Emma

My second post went live on the site yesterday morning. I spent most of the day out doing errands then having lunch with a friend in Oxford etc.  I came home to my twitter notifications full of really positive and encouraging feedback.

That post was about self worth and is called Because I’m Worth It.

 

On Volunteering and Housing Day

Today is #HousingDay (hashtag housing day) a day designed to promote social housing and highlight all it does for people in the UK, how important it is and just what the need for social housing is.

I know from my own experiences just how much having access to a flat that is fully adapted to my needs, is safe and secure (in terms of both safety and tenancy) and affordable is.  It’s more than a roof over your head it’s the ability to make plans and do things and get on with your life that might otherwise be impossible.

And in both parts of my CAB  role (adviser/gateway assessor and social policy coordinator) over the last few years I’ve seen more and more people becoming homeless, struggling to find somewhere to live that meets their needs either due to availability, costs, access needs or landlords who won’t accept housing benefit.

I rent from a social landlord – Soha Housing – to be specific and a few weeks ago they made me aware of a call from TPAS for residents who were willing to share their own stories of being residents and volunteering to work with their housing provider. I’ve been involved since 2010 and we’ve gotten to know each other pretty well. So knowing I like to write they asked if I’d be interested in sharing my story.

I wrote my story and it was pretty tricky. There’s no doubt that the volunteering I do – both for Soha but also for CAB – plays a huge role in my life and in many ways has changed my life.  Even taking the CAB aspects of my volunteering out of the equation there was still loads I could say about the matter and it was difficult to know what to include and what to leave out to make the point about why resident involvement is so important to me in just a couple of hundred words.  But I did my best and sent it off and Soha submitted it to TPAS.  And we didn’t hear anything about it.

Fast forward to this lunchtime and I went on twitter to discover that TPAS had chosen ten of the resident stories they had received to highlight and help promote Housing Day. Mine was one of the ten.  I’m really proud to have the opportunity and a bit surprised!  Two of my fellow Soha residents and friend Carole and Richard also had their stories chosen.  All ten of the stories are well worth a read – find them here.

Looking back at what I wrote today I think it’s also fair to say a lot of what I wrote about how being involved with Soha helps me – especially my last paragraph – can also be applied to my CAB work.  People have in the past said to me they don’t understand why I volunteer and how I could just sit at home and no one would blame me.  But I’d be a lot worse off – and possibly in need of greater medical and other support – if I did that.  Because that’s the difference volunteering makes.

 

Apparently people with mental health problems just need to “tell someone”

So Robin Williams has died.  Suicide.  And that’s sad as any death is.

Facebook is full of posts with his picture sharing phone numbers and websites of helplines.  Ones telling people that “suicide is a permanent solution to a temporary problem.”  And declarations that if you’re feeling down, if you have depression to make sure you tell someone.  Friend’s saying that they hope their friends feel capable of telling them.  And similar on twitter and other places.

Here’s the thing: I have a depression diagnosis and I have a lot of anxiety at times which has been recognised by medics although it’s never been given a label like GAD (generalised anxiety disorder).  It’s more than 11 years since one of my friends finally convinced me to go and see a GP about the way I felt.

I’d told someone.  I’d told her.  But she couldn’t physically make me go to the doctors and get help. She kept telling me I needed to and encouraging me to for at least six months.  I’d probably been depressed to a certain extent I had to do that myself (and unfortunately that meant things deteriorated because I didn’t go until I got scared about what might happen unless I did).

Then I went and told a GP.  It wasn’t my GP because my mine was a male and I thought a female doctor would be easier. It was a first step but it wasn’t the solution facebook seems to be suggesting it was.  Telling her wasn’t enough.  I needed her support but I also needed meds and I needed time.

That first type of antidepressants made me ill so I ended up telling most of my carers although I’d not meant to.  Several of them said “me too.” and I was shocked.  Telling people might have been easier if I’d known how common it was. I felt less alone.

I went back a few weeks later for review and I did tell my then GP because really I loved my uni GP because he also had CP and he got a lot of what I went through.  Over the years he’s been one of the few medics I’ve never had to convince that my depression isn’t caused by my CP. He’d seen me a lot in the months before for UTI and chest infections and I don’t know what else routine stuff.  And he apologised to me for missing my mental health problems.  It meant a lot to me but I wasn’t surprised and I didn’t blame him.  I’d hidden it.

And since then over the last 11 years I’ve been on and off of antidepressants.  I’ve told a lot of people about my mental health.

I’ve told friends.  Family. Doctors, counsellors, social workers. Carers and some other people too.

Sometimes it helps a lot.  Sometimes it helps a little.  Sometimes it doesn’t help.  And unfortunately sometimes it makes it worse.

I’ve had the response:

That I’m being silly

That I just need to stop taking antidepressants because they “are addictive and bad for you.”

That of course I’m depressed because I’ve got CP, what do I expect?

That things that have triggered bad times are in the past and I need to move on.

That I’m worrying about nothing

This too will pass

“you think you’ve got it bad I’ve blah blah blah” from a friend who kept telling me to tell her when things were bad.  She still does that now and she gets annoyed if she ever finds out I’ve not told her stuff.  But I’ve never, in more than 11 years since diagnosis been able to have a conversation with her about my mental health problems without it immediately being turned into something all about her.

Offering to listen and encouraging me to tell you about my problems is huge.  But I need you to actually listen.

How could you help someone in a mental health crisis:

Don’t use cliches like this too shall pass or the one I keep seeing today “suicide is a permanent solution to a temporary problem”.  Robin Williams had been undergoing treatment for various mental health conditions for over twenty years.  He had a real, serious illness not a temporary problem.  Calling it that belittles his suffering.

If someone tells you don’t try and make them tell you exactly what it is they have to be depressed or anxious about.  Mental health conditions can and do defy explanation.

Also, don’t make assumptions about causes.  I’m sure some of the counselling I’ve had would have been more effective if I’d not spent so much time trying to get it though the counsellor’s head that the fact I can’t walk had nothing to do with my mental health. The assumptions of a supposed link between my physical disability and my mental health condition make it harder in fact.

Only make offers of support that you genuinely mean.  If someone offers me the chance to talk but then tells me all of their problems rather than listening when I try to take them up on it I usually end up feeling worse because I feel alone and I’m worried about my friend.

Support takes different forms for different people.  I have issues with medication compliance.  Someone demanding to know everyday if I’d taken my meds (something one of my carers tried) didn;t help me.  But when I had a friend who was also struggling with med compliance we would tweet each other and check in every day or two sort of “I’ve managed my meds today, how’re you doing?” that really helped.

Don’t try to force a particular therapy or drug on someone.  Fluoxetine might be really great for people who have depression that worsens around their period.  I was on fluoxetine when I first started raising that issue and it didn’t help.  Sertraline did but all I kept being told from medics was “fluoxetine is good for that, perserve” until finally one switched me to sertraline for another reason.  Friends told me fluoxetine was good too.  It was good for me but it wasn’t the answer.

Just because you recovered doesn’t mean I will.  I care about how you’re doing but when I’m really struggling telling me that I only need six months of antidepressants doesn’t help.  And actually, the standard treatment isn’t six months of antidepressants.  it’s treatment until condition improves and then for another six months to ensure no relapse.

If the person in question is able to lead you in what support they need try to follow them.

But don’t, ever just tell someone to “tell me” if you have a problem and expect that to be the answer.  It’s a first step that you can take to helping them.  Telling you is a brilliant first step for the person with mental health condition.  But living with/treating/recovering from/whatever a mental health condition is a long, long journey.  And it needs more than that first step of talking about it.

Perfect by Rachel Joyce

I received a review copy of Perfect by Rachel Joyce via NetGalley. I’m not compensated for this review beyond my free copy and this review is in no way influenced by the fact I was asked to write it.

Here is the synopsis:

In 1972, two seconds were added to time. It was in order to balance clock time with the movement of the earth. Byron Hemming knows this because James Lowe has told him and James is the cleverest boy at school. But how can time change? The steady movement of hands around a clock is as certain as their golden futures.

Then Byron’s mother, late for the school run, makes a devastating mistake. Byron’s perfect world is shattered. Were those two extra seconds to blame? Can what follows ever be set righ

OK so first I must admit that I thought the two second thing was a fictional joke and at the end of the book would turn out not to be true. It turns out however it’s real and since 1972 when they were first added 25 leap seconds have been added to our clocks. You can read more about that here. But my mind? Officially blown.

This is the first review I’ve written in a long time where I’m not quite sure what to say.  All the way through reading this book I was really liking it and thinking how good and powerful it was. This is Rachel Joyce’s second book.  Her first is The Unlikely Pilgramage of Harold Fry.  I’ve not read that and as I was reading Perfect I kept thinking “I need to read her other book really soon.” and wondering if I was right in thinking my Mum has read it (answer: I don’t know, I kept forgetting to ask her).

Mental health issues play a huge role in the plot and whilst the ones covered aren’t similar to my own struggles with depression and anxiety I did think they were realistic and I could relate to some of what the characters were going through.  For at least one of the characters in the book their mental health was very disabling and their experiences of being “different” don’t match mine in that my own disabilities are physical but bits rang a bell.  I must say that the need for disabled characters in books who are realistic, not the stereotypical object of pity, inspiration or the hero or villian is something I truly believe I need and something I’ve blogged about a few times before (probably more than a few times come to think of it).  There do seem to be a lot more books out there nowadays that not only attempt this but manage to do it and do it very well.  And I’m really, really pleased about that.  But it seems to me that the focus is solely on either autism or mental health problems.  Both are important conditions  and both should be included in fiction and films and the media because it does help to show that disability is just a normal thing that happens and doesn’t need to be hidden away or feared or pitied or whatever.  But I do wonder where they physically disabled characters are?  Where are the people like me?

When I got to the end of the book there was a big twist as there often is in a book.  I didn’t guess it and in fact I’m relatively confident in saying it’s so obscure I doubt anyone could.  I felt a bit put out by that twist though because it didn’t seem to do anything… and I’m not sure I understood what the point of it was.  So it’s a bit disappointing and has left me wondering if the message I want to give in this review is “this is a good book that I liked” or “the ending was so confusing I don’t think it’s worth reading.”  And I’m not sure if I do still want to read Harold Fry either because the internet rumour has it there’s a similar WTF twist in that.

Self-Care Sunday: I Did

Just a quickie this week because Downton Abbey is on in a few and I’m trying not to watch TV and be on the iPad at the same time.

Having written last week about feeling like a failure I’ve been trying to keep that big picture in mind more. One of the things I’ve been doing is writing a list of what I’ve done/achieved each day. It’s very useful because yesterday I did very little but I’m not beating myself up about it because I know I’ve achieved a lot this week I might otherwise have overlooked.

Plus, knowing I’m going to be writing it down means I’ve eaten a proper dinner each day and taken all my meds. I’ve not achieved that for a few weeks.

I feel better this week.