The Value of Self Care

I've had a difficult few weeks.  My powerchair broke so I spent the better part of three weeks stuck at home.  I went from going out independently at least once a day to going up to a week without leaving the house and not being able to do without struggle and help.  And it needs to be replaced. I've got a loan chair now which helps a bit but I feel a bit in limbo.  We had a death in the family too, an elderly relative whose death was expected so whilst it wasn't a huge shock it's still  tough to deal with.

And the news is full of atrocities too from the attack in Orlando to the murder of MP Jo Cox yesterday.

Bad news and difficult things wherever I turned.  It's all a bit overwhelming and upsetting and I could feel my mental health slipping.  I got rather irrationally angry about a few things that I knew would otherwise have been simple frustrations for one thing.

Now, to be completely honest I have coped with the powerchair situation much better than I could have done.  It was the whole of everything all at once and the fact that few over a week there was no sign of situations resolving that was the problem.

There is now a plan, I have a new chair on order and it's going to be better than the one I had before.  It's also going to be the colour of my choice - black! (My last chair was only available in red. It was a nice red but I would never have chosen it).  I have a loan chair so I'm getting out a bit again.  And I'm moving away from the immediate things are tough survival mindset I was in to one of self care.

Self care isn't an easy place to be because it's hard to put myself first.

I'm making plans for when I've got my own wheels.  I've decided that I need things to look forward to so I'm making sure I get them.  Plans are very rough but it looks like I'll be off to London at least twice and having a day out with my Dad somewhere else (we've decided what we'll do but where and when is up in the air).

I'm avoiding the news today because it's stressing me out.  That feels particularly wrong because I'm studying journalism, I'm supposed to be keeping abreast of the news. But it's what I need.

I'm spending long periods away from the Internet because social media especially is making my mental health worse.

I'm taking naps. Naps are good.  They feel unnecessary but I always feel better after them.

I'm trying to read or knit or do one of my hobbies everyday.

And as tough as it is I'm trying to accept that people want to help and take those offers of help up when I need to.

But I still feel that self care is something I struggle with, perhaps don't even deserve and I need to get better at it.  If anyone has any tips or tricks, they would be most welcome!

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Five Reasons Why I Volunteer

As this week is Volunteers Week I wanted to write about my reasons for doing voluntary work.

I have a life long disability which means I'm not able to work.  At first when I left uni I hoped that I would be able to do some part time work and started looking for a job.  But what I kept hearing was "you've got the qualifications but not experience" - the problems my disability causes had meant I hadn't been able to manage studying for my degree and working.

So I started doing some voluntary work to get me that necessary experience.  I didn't enjoy my first voluntary job and didn't do that for long. But then I started volunteering for my local Citizens Advice and found something I enjoyed.  I later began doing other volutary work on an occasional basis.

11 years later I still volunteer.  I don't work - I've never had a "proper job" like society seems to think I should have and at the moment I'm content to just volunteer.  I'm in the support group for Employment and Support Allowance (this is awarded to the most disabled people who aren't expected to do any activities to prepare for work). This isn't going to change. 

With all the talk around scroungers in the press and people trying it on, not being able to work can do a number on self esteem.  I find volunteering prevents that (most of the time at least). Some people think that's ridiculous but it works for me. Here are five reasons why I volunteer:

1) It gets me out the house meeting people and gives me a regular place to be a couple of times a week (my Citizens Advice role) and the chance to fit varied extras in as and when I can with the other things I do - some of which I can do from home.  I find that structure to my week very useful.

2) I meet a lot of new people through my volunteering who are often interesting to talk to and occasionally teach me things. Some of my fellow volunteers have become good friends and in one case my go to person when I need to talk.  Often these are people I wouldn't have met or wouldn't have expected to become friends with if not for our volunteering together.

3) Sometimes (sadly not always) I come away feeling like I've really achieved something or made a difference and that's a nice feeling.

4) I've learnt new skills and done things I wouldn't have considered before. Those skills might transfer to other areas of my life.  For example I feel my writing has improved thanks to some of the community journalism I've been doing which makes me a better blogger.

5) It often surprises me and keeps me on my (metaphorical) toes.

Obviously these aren't the only good things about volunteering and it's not all good but as someone who both volunteers and has greatly benefitted from the support of people who volunteer in other roles (for one thing I wouldn't be able to sail if not for the large team of volunteers who run my local sailability) it's something I'd highly recommend everyone consider.

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On being realistic

I often describe myself as being an ideas person rather than a practicality person. And I'm not very grood at always following through on my ideas.  I am trying to become better at the follow through because I get very annoyed with myself at times for how often I don't do that. I tend to view it as a failure and beat myself up about it.

The trouble with that is that I then get very stressed about how much I have to do, everything I need to fit in and the fact that I'm on the verge of another failure.  I think part of it comes from my having had bouts of depression and anxiety for so long.  And another part probably comes from being disabled.  Many people who don't know me see my chair and have low expectations of what I'll be able to do and who I am.  Hell, even some people who know me but not well have those.  It makes me uncomfortable and like I need to prove them wrong.  I'm more than my disability and I remember as a teenager telling someone that the best way to get me to do something was to tell me I wouldn't be able to.  I'm not quite like that now but I do still hate when people make assumptions.

Lately I've been trying to do something different.  Trying to be realistic about what I'm doing and how I'm doing it and everything else that's going on around it.  Having an idea and planning to do something is great.  But is it realistic?  If it's not realistic and/or life intervenes and something doesn't happen that doesn't mean I've failed.  And more importantly is it important?  What's the worse that's going to happen if I don't manage to follow through on those big ideas?

If I don't manage something important then that's a problem and I need to look at how to prevent that happening again. If I don't manage something I'd like to do but isn't necessary it's not a problem and I need to chill out about it.

If I don't read as many books this year as I planned then who cares. It's much better to really enjoy fewer books this year then push myself to read a large number for the sake of it (I've actually recently drastically reduced my Goodreads challenge for that reason and should probably delete it).

If I decide to update my blog everyday for a while but only get it done a couple of times because life got busy that's fine. It's my blog. I don't get paid for it. I get a lot out of it and I enjoy it and that's what's important. I'm writing and really nothing else matters.

Except it's not really fine because as much as I'm working on being realistic and not beating myself up it's not an easy thing to do.  More often than I'd like I'm beating myself up still.  And I find myself frustrated at yet another thing to add to my failure list.  Even when it's not, actually, a failure.

I wish I could end this entry with some form of magical tip on how to cope with this and what to do to stop it. Life doesn't work like that and I can't. But I know from talking to other people that so many of them feel like this too and so I wanted to share this to at least we know we aren't alone.

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No and No and No and that's OK

I seem to have to answer no to a lot of the random questions people ask. Strangers like hairdressers, people when you first meet, family I don't see often. Usually my answer to polite small talk questions is no.
"Do you work?" "No."  "So you're looking for a job?" "No."

"You married?" "Nope." "Partner?" "No."

"Any kids?" "No it's just me."

"Going on holiday this year?" "No I don't think so."

"Do you drive?" "I'm not allowed due to my disability."


"So did you see Eastenders last night?" "Nah I don't watch it."

I swear the only polite small talk questions I can answer well are the boring British weather related ones. And those "no" answers can shut down conversation.  I ask about the other person but it can feel a little one sided and maybe uncomfortable for them.

 Sometimes the questions are put in a different way and I can answer them - "What do you do?" is easier than "do you work?" because I can talk about my writing and my volunteering.  Sometimes I answer differently - "no, I'm not going on holiday but I've been having a day out a month" means we might talk about where I was and what I was doing.  "I don't have kids but I have a nephew."

But the fact of the matter is that those questions are the ones that society expects me to be able to say yes to most of.  As a woman in my 30s it's expected that I'll have a job or be looking for one, drive some form of car as opposed to a powerchair, take holidays, be in a relationship and either have kids, be planning for them soon or be definite that I don't want them.


Society doesn't really know what to do with me.  I'm very disabled, I don't have kids but don't rule it out, I don't work and couldn't manage to do so, I haven't taken a holiday since 2007 and I travel everywhere by train or not at all.  I'm very happily single and don't really want to be in a relationship.  I don't even watch Eastenders!


It almost feels sometimes that those negative answers define me more then who I am.

 My friends and family accept and love me for that and I wouldn't change myself.  That doesn't mean it's always easy or comfortable polite small talk and quick encounters don't always give time to share who I am and make the positive impression I'd like.  I worry that those strangers see my disability and not the girl in the chair.

As I've gotten older I've gotten much happier about that situation.  It is what it is and I am what I am.  If people only want to ask those questions, judge me by those nos and not take the time to get to know me they aren't worth my worrying about (although I can't always help it).

I'm someone whose always going to have to answer no to the questions society expects. And that's OK.

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Me Time

I took about ten days out from my usual volunteering and daily activities recently.  I'd been very stressed and was feeling pretty run down.  So I needed a break.  Break from the slog of all the things I do.  A break from the expectations others have of me "Oh, Emma will do that."  And most of all I needed a break from the pressure I put on myself to do everything and always say yes because I feel like I should.  It's the downside of doing voluntary work - it's very hard to say no.  Especially with all the pressure and expectation from society that we should be working in paying jobs full time and pulling our own weight. 

I was very clear to everyone what my plans were. I was going to a workshop in Birmingham and to London for two days. And I was going to see a friend. Other than that in the inbetween times I was going to laze around reading, watching TV and knitting.  Several people said that sounded wonderful and they wished they could take the time just to be at home and relax.  At least one person when told I wouldn't be available at that time got the impression I was going away for the whole time.  I didn't disabuse them of that notion because them thinking that suited me.

I enjoyed it and it was very useful.   But getting to the point where I could take this break and put myself first for a few days was difficult.  And even a few days before I nearly backed down - I could hear a conversation going on around me how someone was needed to do something that week. They weren't sure how it could be done.  It was one of my usual days and I didn't have anything planned so for a few seconds I felt like I should speak up and offer to go in as usual.  I didn't though.  Because I knew that actually I'd do better long term and be more useful to them if I did take some me time and recharge my batteries.

After ten days I felt better.  Still tired but less stressed and run down.  I'd done almost everything I wanted to do. If anything I could have done with it being a few days longer - I didn't feel ready to go back to my volunteering this Monday!

Going forward I think that's something I probably need to do much more often.  I need to carve out that time (which I'm not too bad at doing) and stick to it (I'm terrible at that).  But more than that I need to find a way to manage the expectations others have of me and get better at saying no to people when I need to.  Me time is fantastic and so important.  Fitting it in all the time rather than boom and bust like this is more important.

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Feel Good Music

I love music. I love to put it on loud and dance around my flat whilst singing along (badly but enthusiastically).  I probably annoy my neighbours when I do that but I can't make myself stop.

There are a lot of songs that have memories wrapped around.  Songs that make me smile and laugh. Ones that make the bad days better. And ones I probably shouldn't love but I just do.  And I tend to find a lot of meaning in song lyrics.

I'd struggle to tell you my favourite band or genre because I have ecclectic tastes. I have a special place in my heart for musicals and have a lot of soundtracks in my collection and at the moment I'm on a big Adele kick. But other than that pretty much anything goes.

Here are some of my "feel good" songs. It's taken me much longer to write this post than it should have done because I kept thinking of other better songs to include and having to stop to look them up and sing and dance around to them.

Anything Can Happen from the musical Mary Poppins:


"Anything can happen if you let it 
life out there waiting so go and get it 
grab it by the collar 
seize it by the scruff 
onceyou've started living life you just can't get enough
Anything can happen it's official you can choose the super
or the superficial sally forth the way we're steering obstacles
start disappearing go and chase your dreams you won't regret it"

 Roar by Katy Perry

I got the eye of the tiger, a fighter, dancing through the fire
‘Cause I am a champion and you’re gonna hear me ROAR
Louder, louder than a lion
‘Cause I am a champion and you’re gonna hear me ROAR

Fighter by Christina Aguilera

Makes me that much stronger
Makes me work a little bit harder
It makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter

Stronger (What Doesn't Kill You) by Kelly Clarkson

You think you got the best of me
Think you had the last laugh
Bet you think that everything good is gone
Think you left me broken down
Think that I'd come running back
Baby you don't know me, cause you're dead wrong

Just The Way You Are by Bruno Mars

When I see your face,
there’s not a thing that I would change,
'cause you’re amazing
just the way you are
And when you smile,
the whole world stops and stares for a while,
'cause girl, you’re amazing
just the way you are

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Because I'm Worth It

Over the last few weeks I've been noticing more and more that I put myself down.

I got invited to an event and the organiser replied to my emailed RSVP saying she was looking forward to seeing me and would save me a space in the front row. I thought "she doesn't mean it." about the looking forward to seeing me part, assuming she was just being polite. Then got part way through emailing her that I'd rather sit at the back in case my wheelchair blocked other people's view before I realised that was stupid and deleted it unsent.

An acquaintance said my blogs were really funny and I was a good writer. I should have just said thank you. I didn't believe them though so I was dismissive "oh it's nothing."

I was asked for my opinion on a project - option A or option B. I said what I thought and followed it up with "sorry, that's probably no help whatsoever."

My journalism tutor told me I'm doing well and am on track to pass the course. "You can't say that yet."

Recently a friend wrote on my facebook wall that he'd been wanting to call and congratulate me on a finished writing project (a group one that several people contributed to and I put together) but he assumed I was too busy to take his call. That made me laugh. It wasn't something to be congratulated on. It was just something I'd done. I commented back that he'd made me laugh. And he asked "why do you never believe me?"

Yeah. That made me stop.

I do put myself down often. I don't believe compliments I'm given. And I belittle my achievements.

It's crap. And I annoy myself each and every time I catch myself doing it.  I think (I hope) I'm probably more aware of my negative self talk since my friend called me out on it.

I would never talk to anyone else the way I talk to myself. I wouldn't ask for their opinion and then say it was "no help at all." And if someone else had told me I couldn't sit at the front in case my wheelchair blocked the view I'd have gone apeshit at them because it's not OK to talk to me like that.

So why do I act like it's OK to say those things to myself?

I'm now trying harder to catch myself before I say or think these things about myself but it's really hard.  They slip out before I can help myself much more often than I'd like.

But I do need to stop putting myself down and start believing in what others tell me.  My journalism tutor said I'm doing well because she's marked my work and knows I'm doing well. Same for being on track to pass.  The compliments about my blog being funny are because it made the reader laugh.  They aren't being polite, kind, or nice and it's not because they see my wheelchair and feel sorry for me.

It's because they believe it and  think I'm worth it and it's true. I need to keep repeating that even though it sounds silly to me until I believe it.

Because I AM worth it.

*L'oreal style hair swish*

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What Makes Me, Me - Emma

I've been sort of putting off writing this.  I did make a start but I decided it was rubbish and deleted it.  That seems to be a bit of a writing habit for me when I write things other than my own blog. And I've been thinking I should make another attempt but not doing it. I've always been a bit lacking in motivation - great at ideas and not so great at the follow through.  It's one character trait of mine that I really don't like.  I'd blame it on my mental health (depression/anxiety) but I'm not sure that's right.  I have had mental health problems for so long though it's sometimes hard to remember a time before. Who was that Emma? I'm no longer sure.

If this was an intro post I'd probably have it done in a few minutes. Telling you what I do and what I like is easy. Writing about who I am and what it is that makes me that person is harder.

Part of the problem is my wheelchair.

My wheelchair is not a problem to me.  It's not a problem to my family and rarely to my friends.  It does often seem like my wheelchair is problem to the rest of the world though.

I'm life long disabled and have never known any different. Using a wheelchair is just part of who I am. I have two of them, a manual chair for use in the house and a powerchair for out and about. I love them, particularly my powerchair.  They give me my independence, allow me to do things I wouldn't be able to otherwise and my powerchair at least is my freedom wrapped up in a very expensive series of metal, motors, batteries and tyres.

But I'm more than the wheels I move on.  Unfortunately all too often it feels like that's all everyone sees.  It can be a good thing - I do voluntary work for my local Citizens Advice Bureau and people often come back and don't know who they've seen before. When they say "it was the girl in the wheelchair" everyone knows it was me.  When I'm in Sainsburys and someone says "I don't like to see people in wheelchair's struggling" (whilst completely missing my lack of struggle) it's horrible.  Not only can it make me feel like nothing at all, it can cause me problems - recently someone grabbed my basket off me at the checkout to "help" and as they lent over me they knocked the joystick that controls my chair and I crashed into the checkout, banging my leg.

Sometimes I'm accused of having an attitude problem or being ungrateful - often when I've tried to refuse help I didn't need or want. Sometimes it's true, sometimes it's not. Sometimes I just don't know.

I spend too much time online - it's a safe place where the accessibility issues that can plague me in the real world don't exist - and am usually tired.  I lose myself in books but wish more had characters like me.  I'm a daughter, sister and new aunt and I have good friends.  But I'm often lonely as few of my friends live near me.

And right now it's the night before this post is due to go live. For the last several days the draft of this post ended with a comment about how exposed writing this made me feel and it does.  I've been reading the other's posts about what makes them who they are and feeling a bit like I don't deserve to be writing here. Maybe I don't fit in. Maybe I shouldn't have volunteered to write here.

But then  tonight things changed.

When I was at secondary school (I went to an all girls one) I was one of a group of five friends. As individuals we maybe didn't have a lot in common but as a group we worked.  We were close and I have so many memories of laughter and things we did and places we went and in jokes and teenage silliness and spats.  Feeling like I don't fit in is something I've struggled with for my whole life but with those girls I fitted.

Then we left school and we mostly lost touch. Oh there's the odd facebook message and I still live near a couple of them.  I'll see them in town occasionally and we'll say hi, maybe stop to chat a little. But our group is no more and we're not close.

A couple of hours ago I got home and found out that one of them killed herself today.  I've lost one of the people who during my teenage years played a large role in what makes me who I am. I I'm numb and I'm swearing a lot and I don't know what to say or really how I feel.

I'm not naive enough to think that something I could have done or said could have saved my friend - I've blogged before about how mental health needs more than talking about. Talking can only take you so far.

 But when I was first struggling with my mental health I felt so alone. And knowing I wasn't the only one would have helped me accept help so much sooner than I did.  If I can share here and perhaps stop someone feeling as alone as I did then, or give them a place where they fit, like my friend did for me that's what I'll do.

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