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 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.

 

 

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.

Self Care Sunday

I’m not sure what form self care has taken this week that I can blog about.  I’ve been getting into quite a good routine, taking my baclofen and sertraline (muscle relaxant and anti-depressant) everyday, writing everyday – although not the stuff I’d really like to be writing everyday, getting a break from my wheelchair every afternoon or early evening, a fair amount of stretching but not everyday and some form of exercise most days (usually a very small amount and some days it’s been more of a phoning it in thing).

But at the same time I’ve also had a brand new PC which is very very exciting but has meant my sleep pattern has gone right out of the window and I’ve not been getting enough sleep which isn’t good!  I must work on that… the trouble is when I’m on my iPad it’s easier to be aware of how long I’ve been online or faffing around playing games because the battery % goes down and then gets so low I have to charge it.  Or it’s gets down to a point where I know I’ve been on too much because It’s less than two days since it’s last charge and it’s under a certain % (I always get two or sometimes three days out of a charge). Plus, the ipad is easier to put down and go do other stuff and go back to than a PC is. I think because for some reason I don’t like to have the PC on but not be using it.  Although this new one boots up so quickly that may become less of an issue.  I think for a first thing I need to stop putting the PC on after a certain time of night.  Must work on that.

I’ve been much less social this week, in part due to a lack of opportunity.  I had coffee with a friend on Tuesday and lunch with another on Friday and as always I’ve seen my parents.  I also went shopping on Thursday so I saw several people I know and enjoy a brief chat with at both railway stations – loads of people think it’s weird that I’m friendly with the assisted travel staff.  Make no mistake I’d not say they were my friends but I’ve known many of them for years – between the three stations I’m at most often there are at least two people who’ve known me and helped me since I first started going on the train by myself in my late teens.  But there’s nothing wrong with being friendly – it takes a lot of confidence and guts to travel on the train by myself (in fact I started getting a little freaked out on Thursday when I was put on the train at the time it was supposed to leave and then it didn’t leave for 30 minutes).  It’s not a big deal and I don’t want you thinking I’m brave for doing it.  But I have that confidence because I know the people and who they are. Anyway, I seem to have gotten off of the topic of being social.  I think it’s probably a good thing that I’ve not been out and about as much this week, I needed the break.

Speaking of breaks, one of the things I really struggle with at this time of year is the idea of snow.  I don’t go out in the snow because I don’t think it’s safe when it’s properly on the ground for my powerchair. So I tend to get all “Rah! must go out because what if today is the one day I don’t go out and then I get snowed in and can’t go out for weeks” and I go and do all the things and put pressure on myself. Plus, god forbid I should leave going to get a loaf of bread until tomorrow. I might not need it today but I have to go today because it might snow.

But lately I seem to have been doing much better at having downtime and not panicking so much about the possibility of getting snowed in.  I’ve had a few days at home lately including Wednesday.  My new PC was coming and I was planning to stay in till it came but then they text me and said it was coming mid afternoon and I thought “right I’ll go and do this and this” and then I stopped and thought “no, you’re tired you need a break.” and I stayed home. So that’s taking care of me.

That said, I have now got to the point where a day or two of snow wouldn’t go amiss to make me get a decent break from rushing.  I’m thinking if I could go to the CAB Christmas social (which we always have in January) on Tuesday evening and then wake up to snow on Wednesday morning and have it gone again Sunday that would be fabulous.

I’ve been wondering…

A Thursday Thirteen list of things I’ve been pondering lately:

…who invented chips?
…does anyone ever use just one piece of loo roll?
…why does one of my powerchair tires have zero tread left but the one on the other side still has a little?
…why are knickers called knickers?
…when will John Green bring another book out?
…how long is too long to wear a bra before washing?
…will I ever get sent another appointment to see my neurologist if I don’t chase him?
…what shall I read next?
…what does mono printing involve exactly?
…do I need my antidepressant dose increasing?
…how long my soon to start second course of iron supplements will be?
…why does it always rain on me?
…should I do NaNoWriMo again this year?

Answers on a postcard please!

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.

>Declaration

>My mood is somewhat better today; I actually feel like I’ve achieved some stuff which helps.

I have a positive looking outcome to an access issue I flagged on the horizon and as that was one of the things that made things tough the other week it’s a help to move things forward. My bruises from my fall are completely gone and a plan is in place to hopefully lessen the impact of future falls (so long as I can avoid falling in the next month or so) I REALLY must blog about that. The third crap thing I think will never be resolved but I’ve almost finished doing everything that needs doing to take it as far as I can. So I’m getting there and moving forward.

All of that crap and I haven’t shed a single tear over any of it. Amazing. Take a bow, sertraline.

This is my attempt at a funny poem. I like it but I think it isn’t good at the funny part.

This is a declaration
A declaration
Or perhaps
A proclamation
I’m not sure
Which

But it is my intention
To provide
This information
In a decisive way

Information
Shared across
The nation
With the intention
Of it being
A declaration
Or perhaps
A proclamation

Should be taken seriously
But now
it’s time to mention
That I’ve lost my train
Of thought
It’s gone
Never to be
Caught

So
This is my declaration
Or
My proclamation
(the difference was
lacking from
my education)
Containing
Important
Information
To be shared across
The nation

Stop listening
To me
And go on
Vacation
Or just have
Your tea.

♥ Emma

>Meds and Such Like

>I think it’s safe to say that at the very least I need to go and chat to my GP about my depression.  I’m much better than I was when my antidepressant was changed to Sertraline but I’m still struggling a lot at times.  That said I don’t necessarily think I need it tweaking again but I’m not sure and I need to keep an eye on these things.

And when I went to the physio she was talking about the possibility of changing my muscle relaxants.  Either an increase of my baclofen or taking something else (which said could be instead of or in addition to the baclofen).  I’m back there on Thursday to chat these things through.  That was quite interesting though because I’d not heard of one of the mentioned meds being used for spasticity and I know of loads of people who take it.  And she also queried whether I was taking anti-depressants for depression or spasticity as apparently some anti-depressants can be used for spasiticity as they relax you.  I’d never heard that before but it’s an idea I’m quite interested in.  If I don’t come back without a drastic increase in my baclofen or an extra prescription I’ll be very surprised.

The physio has also referred me back to wheelchair services as she says I either need this chair adapting or a new one as it’s totally unsuitable and she thinks part of the cause of my pain.  Wheelchair Services however are saying I have to go back on the waiting list which has an average wait of 18 weeks.

She also advised me to go back to social services and asked to be reassessed for care needs, specifically for help with socks and shoes.  I’ve not done that yet.

A few other things were mentioned as possibilities so I came back with lots to think about which is part of the reason I’ve been so quiet on this blog.

Oh and she told me I should be leaving my wheelchair in a different position (equivalent to where it would be for a lateral/slide board transfer) when I’m standing and transferring.  Getting the hang of that is not proving easy at the moment!

>You know you’ve got CP when…

>…getting a date for a hospital appointment through is a very good thing!

Yes, after a three month wait I am going to Outpatients to see the Neuro Physio next week.  As much as my spasticity levels have dropped since switching from Fluoxetine to Sertraline I still need them sorting out as they aren’t good, still.  I’m quite looking forward to seeing the physio and hearing what they have to say.  I just hope it isn’t disappointing!

>Writing is my passion

>I’m writing again.  Regularly and in decent amounts when I do write.  It’s only been this week but I’ve written everyday so I’m sure that counts as regular.  And today I’ve done absolutely loads.

I’ve been wanting to write I really have.  But with the way my depression crashed in and hit me I was fine if I had to leave the house and go somewhere for a set time, that I could do.  If it was something I had to do in my house like stick some clothes in to wash and something I needed to do but not at a set time that was a huge struggle.  And sadly, my lack of motivation extended even as far as writing.
But, on Monday I put fingers to keyboard once again and started typing.  Slowly but within minutes I was wondering why I’d put it off for so long.  I enjoyed it.  And it was easy and flowing and rewarding just like it used to be.  My depression induced writers block melted away like an ice cube on a hot sunny day.
Writing really is one of my passions and I hate it when that’s taken away from me – for whatever reason.  I’m very happy that I’ve got my meds sorted out and four weeks later they are working well.  I’m finding myself again.  I’m rediscovering my passions.  And most of all I’m writing and working towards my dream of one day being good enough to have a book published.
It’s a very good feeling, especially after so many bleak and dark weeks.