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.”

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.

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.

Picking my battles

Unfortunately I had to gently complain about an ableist comment that someone made about/to me last week. The comment had been shouted across to someone (it was about my access needs) and that had been my biggest issue with it. It’s one thing to say something inappropriate and ableist to me, it’s a whole nother ball game to shout it for hundreds of people to potentially hear. It was in one of my favourite places and the person I complained to I’ve known for a few years through there. She commented that I’m always patient with them.

And I thought “I’m not. “

I’m not. I’m picking my battles. If I go in screaming and shouting about what he said to me and how it was said I ruin the rest of the event for me. Or I get a reputation and that makes me uncomfortable. Or it becomes difficult to go back there because of what got said. And that’s somewhere I really enjoy and go to at least once a week.

And also, as I seem to tell CAB clients fairly regularly, taking the emotion out of it gets better results because yes it’s shit what happened to them but if you complain calmly people hear your point, not your anger.

But it’s about more than picking my battles. It’s about the fact things like this happen all the time and I’ve become a bit conditioned to it and ground down. Not to mention how exhausting being angry all the time can be.

There are many more moments like that where I either know it’s going to take more energy that I want to spend or I just can’t be bothered and let it go, than there are ones I complain about.

Later that weekend I posted to the CP group I sometimes use about it. I was trying to comment on the “you’re so patient” view vs the reality. And several people said what had been said wouldn’t have bothered them. One told me I needed to learn to pick my battles because it would be freeing and what had been said wasn’t a big deal. To be honest that pissed me off more than the original ableist comment. I replied that I do pick my battles but it was something that mattered to me. #

Then I decided to pick my battles and left the group.

Realistic

I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).

When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.

I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.

I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).

A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”

But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.

It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.

I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.

As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.

In which able-bodied people are weird but if I point it out I’m the weird one.

I was in my manual chair on Thursday while the powerchair was with the tech.

My morning carer said “Wow you must be strong doing that.” And I was pleased because I feel like I’ve lost so much strength and can do so little in my manual compared to years ago. But I was managing well and I liked the compliment.

An hour later the tech came and took my powerchair. Once he left the guy who was here working on my bathroom asked if there was something wrong with it. I explained that it had gone for some routine stuff. Then he said “it must be hard pushing that chair.” I just said “well it’s certainly not as quick!”

At first it amused me to have two such contrasting reactions to the same thing – both congratulatory and commiseration. But it also frustrated me. Because it’s just one form that my normal takes, albeit a different one to most people

And it makes me wonder if I should start doing the same thing to able-bodied people. My Dad and my Uncle are in my garden doing some work at the moment. If I went out there and was like “You must be really strong walking like that” or “That must hard climbing that ladder” they’d think I was really weird.

I don’t get it.

The Things I Can’t Do

Someone declared a few months ago that there “must be lots of things I want to do but can’t.” They mentioned someone they knew was ill (I believe – had been hospitalised anyway) and was finding they couldn’t do stuff. I think they may have been venting frustrations. I said no, I didn’t know how that felt because I can do everything I want to do.

From her reaction, I don’t think she believed me and I ended up back tracking and justifying that statement by pointing out that I’m lifelong disabled so I’ve never known any different (I am annoyed with myself that I allowed her to make me feel I had to do that).

She is right that there are things I’d like to do but can’t

  • I can’t do everything I want to do in London this week as they are too far apart to fit in.
  • I can’t see most of my friends as often as I want as they are too far away
  • I can’t go to the gym more than once a week as the best session for me is only on once a week
  • I can’t write all the stories and other things I want to as I don’t have the time.
  • I can’t stop buying books and yarn despite all the unread and used items in my flat.

But she’s also wrong. Because everyone, disabled or otherwise, has things they want to do but can’t. And the things I currently can’t do are due to life and circumstances. Not due to having Cerebral Palsy or being a wheelchair user.

“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

It’s not what you say

As a wheelchair user there are certain comments, questions, and even jokes about my disability and/or being a wheelchair user that I hear often.  And that’s sort of OK.  I’m used to it and over being bothered by them in most cases.

People (strangers) will ask why I’m in a wheelchair, have I been disabled long, that sort of thing.  Sometimes I answer, sometimes I ask why they want to know.  That usually depends on whether they take me by surprise or not and how feisty and argumentative I’m feeling. And answers to my replying “Why do you want to know?” tend to be interesting too.

But this week I’ve been thinking a lot about how the thing that makes so much of what’s said to me inappropriate isn’t what was said but how and what was said and also when it was said.

Someone I’d just met noticed I have a problem with my feet – which it’s true I have a very noticable problem with my feet and the fact the loan powerchair footplates are in a weird position is probably making it more noticeable.  The comment they made was “that’s a very interesting problem you’ve got with your feet.”  It made me really annoyed.  Now, had that been phrased as a question like “Do you mind if I ask what’s wrong with your feet?” or “my so and so relative has lymphodema is that what you’ve got?” (it is) I would have found it more acceptable.  My condition being described as interesting was not. It’s a judgement and a hint of entertainment (in reality I suspect it was made from a place where the other person was uncomfortable with the situation and trying to make small talk)

And then on another day this week I heard someone else make a comment in a different situation. One I hear variants of all the time.  It’s a jokey one but it’s old and it’s no longer funny (not that it really was in the first place…).

It’s not a comment that’s meant to be ableist but it ends up being so because as a friend pointed out yesterday an able-bodied person would never hear it made to them.

It’s the suggestion (made usually as I reverse my powerchair) that I need to get one of those things that beeps as lorries reverse installed on my chair.

I usually just want to roll my eyes and suggest that said suggestion is a bad idea.  Would they like to be sharing a hotel room with me at two in the morning when I need to get up for a wee and my chair has a reverseing beep? Strangely they always say no.

I’m deliberately not mentioning where I was.  But what I will say was a it was a long, difficult and upsetting day.  And the person who made that comment (complete with actual beep! beep! beep!ing for the first time ever) was there in an official professional capacity and knew that is a situation which everyone finds upsetting.

It really wasn’t the time or place for any form of joke.  It even more so wasn’t the time or place for a disability joke and as I said to another friend I can’t decided if it’s horrific that it happened or if it’s so hideously inappropriate and not funny that it’s become a little bit funny.

A lot of the time I can deal with the comments that people make.  But it would be a lot easier if they realised that they so rarely are new or funny and there really is a time and a place for them.

 

 

 

Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22