A Little Bit of Life

(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)

Two bits of not so brilliant but they could be much worse news are in my life at the moment.  I don’t think dominating my life is the right term but they are definitely big factors in everything right now.  And not easy. Life is never easy.

I will start with the slightly easier one first – my powerchair is broken.

The easiest way to explain it is to say it has a broken castor.  It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).

It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.

The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety.  I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.

I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.

Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.

I won’t go into the ins and outs of how everything has been and all that.  What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years.  A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds.  And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit).  I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.

Self Care Sunday

It’s been a much better week than the previous one. Which is good. I’d almost say it’s been a surprisingly good week but that might be taking it too far.

I’ve been taking my meds as prescribed and am up to 50mg now. I’d been convinced when I saw the doctor that might not do it (because I was on 100mg of the same med before) but actually I now think it might. It’s early days though so best to leave it and see.

One of the things that I’ve been wanting to do (that’s on my twenty things list) is now planned and I’m going to do it with one of my friends at the end of this week. I’m looking forward to that. I should also be doing another of them next week and am hoping to sneak a third in either this week or next depending on time constraints (both the thing I’m doing this week and the thing I hope to do next week should be close enough to the third to fit it in while there if I have time).

And I’ve been taking time out to read. Which is huge because I was so down I didn’t have the motivation to do that which if you know me well was a worrying sign. I read the most amazing book over the last two days and just totally lost myself in it. I’ll post a review of it tomorrow.

In fact I think I’ll leave this here and go get some lunch before doing some more reading.

Self Care Sunday

It’s generally been a terrrible week but there have been a few good moments and I’ve had a great day today despite a few moments of anxiety (new people, train faffing)

I’ve had three days of antibiotics (nitrofurantoin 100mg x 2 daily) for a UTI. And I ended up feeling physically appalling. Sick, dizzy and yucky on top of the usual UTI symptoms.  Finished those yesterday and feel better today which sort of proves the theory that I’ve had for a while that nitrofurantoin makes me nauseaous. As UTIs can make me feel sick it’s been hard to tell.  I’m not 100% right yet.

I had a whole night of insomnia. Which may or may not have had to do with the fact that i felt too crappy mid afternoon that day to stay up and slept deeply for two hours. It is unusual for a nap to keep me up all night though.

Depression has been kicking my ass and I think I probably hit the point where I was as bad as I was in the days before I was first diagnosed. I’ve been to the doctors and am back on sertraline – 50mg a day though rather than the 100mg I was on until last year. Well, at the moment I’m taking half a tablet a day for a few days/week to wean on to it slowly. I actually ended up having to tell CAB a day in advance that I couldn’t come in so I could go to that appt (when I rung and got an appt with the GP I wanted to see the day before I wasn’t going to say no) but it’s a good job I did because I was so yucky with the UTI I’d have not been able to go in anyway.

But as I said there have been a few good things.

I was well enough to go to a show on Friday night – Stephen K Amos. Well, I still felt crap but I felt OK enough to go especially given I was only 10 mins from home so if I’d started feeling rubbish I could have got back easily.  He was good.  A funny guy and a good performer but not one of my favourites. I probably wouldn’t go and see him live again but I’m really glad we went as it was a good evening.

Today I went to Oxford and sort of met up with the NaNo group.  A new ish member and I had been chatting online and had agreed to meet up. And then a meet up was set up by someone else for the group. So I went in and found her easily and we chatted loads and enjoyed it. I did eventually figure out that the rest of the group (two I’d met once or twice and two I didn’t know) were over the other side of the Jam Factory but we were having quite a specific conversation which we were enjoying and they were writing so we stayed there.  I had a bit of time after she left and debated going over to say hi but decided against it as I didn’t have long. I got my book out and read a couple of pages then one of them came over and said “Emma?” and I joined them for 10 mins before coming home.  I enjoyed it.

So things may be looking a little brighter.  But there’s still a long way to go.

 

 

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

 

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.

Surrounded by Sadness

After I wrote the things that make me happy post on Saturday I’d planned to write some more on the subject. I will write more on the subject I’m sure but tonight sees me writing about the opposite of happiness.

Because there is a hell of a lot of sadness around me lately.

I heard of the death of a friend of mine and my parents yesterday.

It was I think the sixth death I’ve heard of in the past seven weeks. Plus my Dad was saying he and my mum know of two others who have died recently.

Two distant family members. For one she was in her nineties and I think it wasn’t unexpected. The second was unexpected and frankly in shocking circumstances.
A very vague acquaintance I’d not seen in years and who probably didn’t remember me
Two people within the wider challenger sailing community, one of whom I’d met briefly once or maybe twice but mostly exchanged a few emails with. The second I don’t think I’d met or at least his name didn’t ring a bell. But he was sailing when he died and I do know the person who was on the boat with him at the time which got me a bit…
And now our family friend.

Funnily enough mum and I used to quite often see him and his wife at the arts centre. We were there three times last week and I’d commented to mum that we’d not seen them for ages and I was surprised they weren’t at the talk on the power station. Then we went to Gyles Brandreth on Saturday and we saw his wife (we know them because she was my carer when I was tiny before I went to school and they used to visit us at least every Christmas until I was well into my teens) with who I assume to be one of her granddaughters. She was telling us about her husband. How he was poorly and in hospital but it sounded like he was in good spirits. We said “send him our love” or words to that extent. And then we went into the show.

And afterwards I was by the merchandise table waiting to get my book signed. She came by and looked at the books. Picked one up saying she’d get it signed for her husband because he’d been meant to come to the show with her. Joined the queue behind me.

Then mid morning yesterday my phone rang.

When my mum rings in the middle of the day in the week it’s usually something wrong or some sort of specific question that needs an immediate answer, often tech support for her computer. And I could tell it wasn’t going to be one of those situations where I’m on the end of the phone trying to tell her how to find something on her laptop and getting annoyed because it’s so obvious if she’d just look properly and she’s at the other end getting even more annoyed and declaring “stupid computer!” In the tone of voice she gets when she’s about ready to chuck it out the window.

And it wasn’t.

She was ringing to tell me of a trip to Tesco, of hearing that our friend had died and a long hug in the middle of the supermarket.

Yet more sadness. Like a bolt from the blue.

I’ve been dealing with a lot of problems lately. Wheelchair issues with both my manual and powerchairs, anaemia, the hospital transport disaster last week. I’ve been feeling crap. I’m run down I think and pretty stressed.

But at the same time all I keep hearing lately is about sad things. People struggling and so many deaths. I don’t remember ever hearing of so many deaths in such a short period before. And in a way that scares me.

It’s like I’m surrounded in the periphery at least by sadness and people struggling.

Am I sad? Yes and no. I’m sad about our friend who just died. I had a drink at the arts centre at lunch with some other friends. It was weird to think he’ll never make me jump again by appearing behind me in there to say hello. I was sad to hear of the other deaths too. But most of all I’m sad for all the people around me who are struggling because of that.

So as much as I planned to sit down tonight and write my follow post about things that make me happy, I can’t. Because happiness and sadness go hand in hand. And I needed to write about that sadness first.

Five Minutes on… Reading

This is one of a new series of blogs I’m trying where I write for five minutes and then post whatever the result is. I use Write or Die and I’ve the five minutes is up I just finish the thought I’m in the middle of and correct the typos. It’s a form of free writing and I think I like it but this is only the second time I’ve tried it (I didn’t write this explanation in the five minute)

I feel a bit like I’m in a reading slump right now. I don’t know why but I’ve been struggling to get into books lately, let alone finish them. So I, currently something like five books behind on my goodreads challenge. And actually, I’m doing a pretty good job of not letting that stress me out but at the same time I do wish I could get properly stuck into a book again and feel like it’s holding my attention.

I did just read Model Misfit by Holly Smale and that was ace for keeping me interested. But for a couple of weeks before that (pretty much ever since I finished reading Les Miserables) I’ve felt like nothing grabs my attention reading wise. I am enjoying an audiobook right now (Cry, The Beloved Country by Alan Paton) but usually I have a book on the go at the same time and at the moment I don’t. I love audiobooks but they aren’t the same as actually reading.

I also feel like crafts aren’t holding my attention at the moment although it’s books that bugs me the most. I must admit the question that keeps coming to mind is “am I having a bad spell for depression?” There are a couple of other things that made me wonder that but again it’s the books thing that I really don’t like.

So at the moment I’m trying to listen to a bit of my audiobook everyday. And I’m trying to read a few pages of something before going to sleep. And hopefully soon I’ll find something from the vast piles of books I’ve got that I start reading and don’t want to put down. I’ve just downloaded a new Star Trek book and I’m really hoping that’s the one.

Because it sucks being a reader with no motivation to read.

Talking, Ten Years Later

It’s that time of the month again when I mosey on over to Bea Magazine and share what I’m thinking, feeling, doing, whatever with them.

I don’t like February. There have been a lot of tough times in previous ones and there are several anniversaries now in a short time. It’s been long enough now that most of their sting has gone but still it lurks. This year I remembered the dates but it wasn’t until several days into the month when I wondered why I felt down and put it together that its often a time I struggle.

Yesterday marked 10 years since I was first diagnosed with depression. It is what it is. I can’t change it and I’m not sure I would if I could.

I’ve written a bit about that over on Bea in Talking, Ten Years Later.

Loser Like Me

This entry may come across as cagy. It is deliberately so.

I’ve been dealing with a completely ridiculous access fail for the past 12 weeks. Basically it’s done a complete number on my self confidence and depression, serving as a weekly reminder every Thursday that I’m different and that I’m not worthy of what everyone else has. Twelve weeks of being told they’d made a decision to do X about including me and then suddenly two weeks later we’ll do Y or oh no Z instead.

It is dealt with. I’m not exactly enamoured with the reasonable adjustment type solution they’ve come with. Full the same as everyone else access wasn’t an impossible dream here and is obviously what I would have preferred. They’re aware that they’ve upset me and for the most part what it’s done to me. The fact that during one of our conversations I was accused of using my disability as an excuse being why I say “for the most part”

I’m not saying I no longer care. I’m just saying that this 12 week course is now up and I’m trying to dust myself off and move on.

Anyway I have been listening to a lot of my feel good songs to cheer me up. On Thursday I suddenly realised that Glee’s Loser Like Me should have been on that list. And after listening to it I thought “crip parody!”

Not sure it’s good but I enjoyed writing it…

You may think that I’m a zero
But hey everyone you ever see
Probably end up like me
You may say that I’m a freak show (I don’t care)
But hey give it a little time
Bet life’s gonna change your mind

All of the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me

Push me up against your rancour
And hey, all I do is shake it off
Go and talk to your boss
I’m not thinking bout you haters
Cos hey I could be a cripple star
I’ll see you if you get this far

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

Hey you over there
Keep the “L” up, up in the air
Hey you over there
Keep the “L” up ‘cos I don’t care
You can throw your distance
And you can throw your steps
Like a rocket just watch me go
Yeah
L O S E R
I can only be who I are

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

♥ Emma

>How am I really?

>Last week I had another attempt at this putting myself first lark and shared with a couple of people that I was sorry but I couldn’t provide the support they were looking to me for as I’m so busy and have a lot going on.

The automatic assumption to this seemed to be that this was a very bad thing and a couple responded along the lines of “sorry you’ve still being dumped on hope it resolves”. That’s the wrong assumption however and I don’t know where it’s come from. I am very busy and whilst it’s true that my mental health is at a bit of a low ebb having taken a hit from the treatment I had for my CP in the summer I’m liking being busy.

I’m doing my usual CAB stuff, and writing book reviews. Plus a friend and I are now jointly running our local nanowrimo/writers group. On top of that I’m trying to make several crafty gifts (so far unsuccessfully) and helping to organise a conference for International Day of Disabled People in December. And I’m writing when I have time.

All of those projects are very interesting and enjoyable in their own way. They also come with various frustrations, most of which I hadn’t anticipated. It’s good though and I feel like I’m learning stuff and making a difference. Add it slightly frazzled mental health and it’s clear I’m being pushed more than is comfortable but I’m bending and not breaking. At times it’s felt like much more and I’ll snap but not right now.

I’ve had both Dr and Nurse appts in the last two days and have talked depression with both (I’d specifically gone to the dr for that but had gone to talk weight with the nurse) That was very useful (although slightly surreal in that when the Dr heard I blog he googled it and started reading it) especially the nurse as she’s known me for years and was able to point out how far I’ve come and what I’ve achieved.

So, how am I? Really?

Tired after three long days. Really busy doing interesting things that at times annoy the hell out of me. Learning lots and occasionally meeting new people. Fine when I’m out but majorly lacking in motivation at home. Down but sane according to the GP, just in need of some new coping strategies (for which I’m getting plugged back into somethings which helped previously). Too hard on myself. On the whole it’s been a small struggle but there are good things in there and I’m finding moments that make me laugh and smile more than I’m finding ones that make me cry.

So, how am I? Really?

Fine, ok, not too bad, getting there. That sort of thing.

Or I will be soon