The New Black

Today I'm not at all sure this 100 days of writing thing was a good idea. I'm also really tired. Which probably accounts for part of it. The whole screwy hormones are screwy thing is probably the other half. Still, 18 days is a huge achievement for me.

The New Black

Motivation I lack
My mood is suddenly black
Or it might be better to say
It's grey.
Because I am motivated
A little
And my mood is a
new kinda black
Not as bad
As my 2011
Great depression
But much worse
Than recently
Even earlier today
So I think I'll say
That it's grey
And that grey
Is the new black.

In some ways
I wish
I could give
Depression
The sack
But it's taught me
Lessons
(in fact
Too many
To mention)
And I think
Even though
It's taken me to
The brink
I needed
To learn
I'm not sure
For A life without
It is what
I yearn

Stability is great
But not a
guarantee
At least if your me
I'll enjoy it while
It's here
Be it a
Day month
Or year
I might seem
Like I have no
Cares
But for me
Stability scares
Because I can't
Explain
What happens in
My brain
Which means
Sometimes
I cry lots
And others
I try lots
And succeed
Suddenly from
My brain
Chains
I'm freed

Today I'll enjoy it
Remember some
Blips are normal
Moods are not ever
Going to be formal

I may say I'm happy
But act a bit flappy
Good days are here
But what if
Tomorrow
They all disappear?
And days
Are all grey
Or even worse
(and this
would be a curse)
Black
Came back



♥ Emma

I Should Be

Day 14 of 100!

A bit of bad news and very high pain levels led to an accidental 3 hour nap and my not being my usual self.

I Should Be

I should be

I should be writing
I should be sleeping
I should be doing the washing.
I should be doing my physio.
I should be sending emails
Exercising, knitting or reading a book.

There are many things
I should be doing
But I'm not

I'm sat here
Back hurts
Spasming muscles
And spasticity
In my legs
Like you
Wouldn't believe

Bad news hits
My mood is
Sad.

But meds mean
I'm not in bits
Without them
I'd really be that
Bad.

My body hurts
One way
My mind
Another

Both conspire
To stop me
In my tracks

Suddenly both
Motivation
And
Ability
I lack

So yes
I should be bettering myself
I should be going to the bank
I should be visiting friends
I should be productive
I should be hundreds of things
And right now I'm not.

My conditions
Are permanent
Today is bad

Tomorrow may
Be good
Not should
Just could

No guarantees
And not choice for me

The list is
Ignored
It'll wait till
Then

I focus on
One
I should be
...
LIVING

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

I've Had Enough

It's three and a half weeks since my powerchair broke down.  

And I've done relatively well since then.  I'm proud of how well I've done in fact.  I've done more wheeling in my manual chair than I probably have in years.  Admittedly I was in a lot of pain for two days after with a very sore neck and achy shoulders but doing so felt good. And the tears have only fallen once (although they came close to coming again this morning.).  A big part of that is probably my antidepressant - but that's why I take it and a big proof that it's working.

Wheelchair repairs taking a long time is normal.  Wheelchair parts aren't like car parts and they can take a while to come.  I understand that.  That's "disability normal"

And I do realise there are people who get to go out a lot less than I do even without my powerchair.  That need powerchairs and don't have them or who can't get out of bed. Who don't live in fully adapted flats like I do.   I'd usually be the first to tell you that I'm very lucky in more ways than one

But not today.

Today I've had enough.

I've had enough of not getting out for days.

I've had enough of not seeing people on some of those days

I've had enough of understanding that wheelchair parts take time

I've had enough of going to the supermarket or wherever when someone can go with me not when I want to.

I've had enough of thinking of those who have it worse than me

I've had enough of having to tell my friend my PIN so she can go to the cashpoint for me.

I've had enough of online shops and waiting for parcels to be redelivered because I can't get to pick it up

I've had enough of someone going to the bank, post office or library for me.

I've had enough of managing more in my manual chair and feeling good about that then paying with lots of pain the next day or two

I've had enough of not knowing when my chair will be back
I've had enough of freaking out my friends with how down this situation made me

I've had enough of begging for lifts and favours

I've had enough of apologising and feeling guilty (everyone's understood and no one has minded but...)

I've just, basically, had enough.

I want my powerchair back.

But most of all I want my independence and my life back.

I am feeling a lot better about all of this than I was earlier today.  But sitting here writing this it occurs to me that I am lucky.  If the planned cuts to services and benefits here in the UK go ahead there'll be a lot more people in the position I've been in for the last few weeks.  The difference is, however, when I get my powerchair back a lot of that should be allievated for me - and it shouldn't be more than another week (I hope!).  For many of those people, that possibility wouldn't exist.  It might never exist again.

In The Right Direction

I'm down roughly a pound and a half this week (from 17 4lb & 7/8ths to 17 3lb &1/4th and I can't do that kind of exact maths).

And I just got back (ok, well an hour and a half ago) from swimming.

Must admit that I'm feeling a little fed up with this now, need to make some really progress again and stop hovering.

Compliments

I've been meaning to post this since it happened because I don't want to forget about it.  Especially today as I am a bit fed up about stupid things that shouldn't bother me.  So here goes:

On Thursday one of the newer creative writers (there are several of us who have done the course more than once; he is one of the ones who was new this time round) and I were chatting.  We went out for a meal after the class as it was the last one of the course.

And he described me as a semi-professional writer what with all my reviewing and all that.

How very. very cool!  And definitely makes me realise that I am closer than I was to my goal.

Writing this out has made me feel a bit better now. Hopefully having it here will mean I can use it to remind me in the future if I need it.

Not the best of weeks - Healthy You Check In Post

I didn't attempt to weigh myself this morning because my emotional state being what it is I couldn't stand the CP related uncertainty and the frustration trying to balance on the scales brings to me.

I've just got my period a few minutes ago which I can only describe as a relief because it means my emotions should calm down a bit and make things a bit easier now. I'm actually planning to restart taking evening primrose oil daily to see if I can prevent the PMS related highs and lows I get. Also a multivitamin because I've heard B vitamins are good from those things and also I think it's highly unlikely that in reality I get a consistent and full amount of all vitamins every day.

My goals of daily water and exercise haven't been going anywhere near as well as I would like or even as well as they were. But that's ok. Most days I've made some attempt at drinking water even if it was a particularly poor one.

To be completely honest the main problem I've been having is the fact that when I get upset or stressed or emotional or whatever the first thing that goes is my willpower and so my eating.

But I have finally made another appt to go talk to the nurse about my weight (next week) and I'm aiming to meet the water and exercise goals everyday between now and then. Probably a poor start but it will do!

Things to Think About.

It was really nice to see Auntie Sheila and everyone this afternoon and I did feel a bit more cheerful when I was out.

I think part of the blah down-ness might have come from the fact that I've not done very much of anything other than computer time, knitting and a bit of reading over the last few days.  I definitely couldn't have been in the bureau this week.  Overdoing it at the weekend and then spending a lot of time at home recovering is not a good mix for me mental health wise.  I guess those two mornings a week where I'm in the bureau do make a difference to me after all.  I knew they did but I didn't know it.

The stupidest thing about all of that is that out of the seven days since I came back from the regatta I've had three days where I've done propery stuff, two where I've done bits like go to sainsburys and only one where I have been at home all day.  I guess it comes down to what you're used too and truly an hour out and the rest of the time at home, usually alone (days I went to sainsburys) isn't great.  I'm used to MORE.   Doing and being MORE is what makes me happy.  But I couldn't have managed MORE this week.

Is that what they call Catch 22?  I've never been able to get my head around that much as I'd like too.  Several people have tried repeatedly to explain it though.  And talking of that, I think that might be one of the next books I read its been sat on my shelf for years.

Time for a paradigm shift me thinks.  I'm not sure how I'm supposed to do that though.

This next week is going to be pretty busy I think so that should shake some of my blues away.

When I was talking to Auntie Sheila earlier we were saying about how there are some very lonely people in this world.

I would never have said that I was a lonely girl.  But then thinking about all this this evening and that conversation and everything that goes with it, maybe I am?  I'm never bored (or not usually) because I have plenty to do and plenty going on around me.  Maybe, just maybe, all of this comes down to a touch of loneliness though?

Something to think on.

Eh

Blah.

Also, Meh.

That is all.

Monkey Girl

So someone mentioned to me earlier today that I haven't seemed my usual cheerful self lately.  And we chatted and stuff,

He recommends that I eat a banana everyday.  And I asked him why

He goes:

"Well, have you ever seen a sad monkey?"

Best.  Depression. Advice. Ever.

Progress

Down 4lb this week. Progress at last.

Looks like something is finally working again. Just need to get the exercise back in now. That's a job for tomorrow me thinks. I have been doing my physio/stretches more however and the difference it's made in my ankles in just a few days is astounding.

Am pretty wiped out now and still feeling a bit off from whatever it was that I had at the weekend. I don't think it can have been Norovirus, that's supposed to be incredibly nasty and what I had wasn't nice but wasn't up there in the incredibly nasty category. I just felt sick and felt sick and felt sick for about three days. Emotionally things are better too; had a bit of an air clearing session with someone earlier and we both cried but i at least felt better after it. So that's more progress.

Better but hopefully not THE BUG

Today is better still.

Things are calmer

And I am happier.

But my Mum is worrying that what I thought was first day of periodness is THE BUG.  So she didn't come round as planned.
That's the only real hitch from today

And it's one I'll take.

So long as she's wrong.

I'm not crazy, I'm just a little Unwell...

I really don't like depression or pms or...

And I've been crying on and off all evening.  So much so that I rang mMum to tell her I was feeling better and by the time she was out of the bath and called me back I was crying again.  Joy.

My  dad came round tonight and did a few odd bits for me.  He bought the dog with him... and the first thing the dog did was cock a leg and wee all over my (new) washing basket.... I told him off and so did Dad and then we laughed.

I know this is a pms thing and I know this is a depression thing and I know this whole crying thing mainly stems from a couple of stupid throwaway comments made by others that weren't meant to hurt me but which did and which I can't leave behind.  Stupid depression feedback loop like thinking.  Stupid secondary disability crap.

And it's not helped by the fact that 1) my parents go away on Saturday and I now worry that they're going to be worrying about me whilst away because of how sad I am right now.  and 2) there is/was a tentative plan in place to reduce/wean my antidepressants this year - the fifth anniversary of which is fast approaching - and I get like this and panic that it's slipping away from me and, and and...

Rationally I know this is alllll stupid and irrelevant and in no way important.  And as Mum put it this time of year is a shitty one and people struggle.  And as Dad put it I'm doing really well and he's proud of me (which is why the tears started again by the time my Mum called back - he'd just said that).

But my brain and my emotions and my hormones are totally messed up and this is the result.   This will sort itself out in a few days and for now... I'm gonna go listen to this song and remind myself of it's truth.

Hormone Hell Blahs

Tough day today.

Or maybe not all of it, but definitely part of it.

Let's just say I tried to calmly talk to my mum about something that had been worrying me a bit and ended up entering hormone hell, losing the plot and crying.

Once again I am reminded why it was recommended that I take evening primrose oil.  And of the fact that I feel better when I do.

Three key thoughts that I keep coming back to lately

1. Who'd have neighbours?


2. Who'd be a woman?


3. Who'd be a grown up?

I didn't weigh myself this morning; couldn't be bothered and suspected my impending period would screw things over and ruin my mood.  Not that it actually needed any ruining today.

I think it's slowly going ok though and I'm hopeful for next week.  I've made changes and they've not seemed so hard.

I could do with something going right...

Guilt, Guilt, Guilt!

Today is a tough day.  I am very glad it is nearly over!

I've been trying (and failing, I might add) to write out and explain the whats and whys and wherefores for some time.

The short version is the battery on my powerchair died on me in town earlier and I had to call in favours to get me home and get some of the things I was trying to do done like fetch my meds and do some shopping for me.  It was hard for me to ask for those and I felt pretty guilty that three different people had to put themselves out to rescue me and help me out.  Believing that I have CP, it doesn't have me might be a great attitude to have most of the time.  But sometimes I have to ask for help and that's not easy.

Then a right gossipy cow I sort of know eavesdropped on a conversation between me and one of my "rescuers".  She could have just said to me "oh i don't know if you know but disabled people can blah blah blah, that might be easier for you." but no, I could told I should have done blah blah blah and saved my friend running around after me.

Yeah, thanks for that, love, I do guilt well enough on my own without you trying to pile more on me.  And the way you then told several people that my chair had died on me?  Nice, that.  Really nice.  Particularly as that's the second time in a month you've  done the eavesdrop and spread it about thing to me.

I am very very grateful to have the friends that I do - the ones who rescued me today and the one who rescued me on Saturday when I locked myself out (my parents are on holiday).  Even if they do sometimes (today) tell me to shut up - because I couldn't stop saying how sorry I was and thank you for helping me etc etc ad infinitum.

It might not be quite time for bed yet but I think it's definitely time for chocolate!

My Give a Damn's Busted

As I posted earlier in the week, it wasn't the best week for me. Particularly not Wednesday which was for reasons that I can't talk about here.

It shocked me how much that one stupid little incident got to me and really got me down. In fact, it even scared me a little. Particularly because it was something relatively normal for me and that I could have no way predicted would trigger my depression. Usually I am vaguely away that things will/may be hard and I can prepare for that but this just blindsided me.

There is a tentative plan in place for me to come off of antidepressants at some point next year and I felt so bad that I was worried that long longed for chance was slipping through my fingers before it had even arrived. So feeling that bad was scary.

It comes back to the no longer having the perspective to know what a "normal" down day is. And also the PMS thing played a part, but not in how much it has stayed with me since.

I've restarted my PMS supplements since that day (in fact, all of my supplements) and I've been able to express all this to people who know the exact details. I even have a sort of semi plan in place to prevent the above happening again. I just need to find the strength to implement it properly and stick to my guns.

So writing this I guess it was a good to have bad experience - and coping with bad/tough experiences is sort of why I'm still a prozac princess - as my GP put it one of my biggest issues now is my confidence and we are hoping that a bit longer on meds dealing with normal life may build it up a bit.

Today I do feel a bit less down and a bit better.

Tough, scary, horrible week - done.

My battle - still going, still winning.

---

On the way home from Sainsbury's at lunchtime this song came on my iPod. Says it all really.

---

Well, you filled up my head
With so many lies
Twisted my heart
Till something snapped inside
I'd like to give it one more try
But my give a damn's busted

You can crawl back home
Say you were wrong
Stand out in the yard
And cry all night long
go ahead and water the lawn
My give a damn's busted

[chorus]
I really wanna care
I wanna feel somethin'
Let me dig a little deeper
Naw, sorry, nothin'

You can say you've got issues
You can say you're a victim
It's all your parents' fault, I mean
After all, you didn't pick 'em
Well, maybe somebody else has got time to listen
My give a damn's busted

Well, your therapist says
It was all a mistake
A product of the Prozac
And your co-dependent ways
So uh, who's your enabler these days
My give a damn's busted

[chorus]
I really wanna care
I wanna feel somethin'
Let me dig a little deeper
No, still nothin'

It's a desperate situation
No tellin' what you'll do
If I don't forgive you
You say your life is through
Come on, give me somethin' I can use
My give a damn's busted

Well, I really wanna care
I wanna feel somethin'
Let me dig a little deeper
No man, sorry
Just nothin, nope
You've really done it this time
My give a damn's busted

My Give a Damn's Busted - Jo Dee Messina

Life is a rollercoaster, just gotta ride it

I've had some really nice touching unexpected things happen lately which made me smile. E-mails and voice messages and packages in the post from people I was on holiday with. When I got home from work and found the card and photos Claire sent me I was soooo happy and sooo touched.

And I had a good day at work today, I was really tired but when I got going and got there I felt good. No one else had understood the part of the AGM that had totally gone over my head so I don't feel like an uneducated idiot any more.

An afternoon in the sun reading Harry Potter and the Goblet of Fire (yes, I will read the rest before Deathly Hallows comes out and yes, I do know how little time there is left for that).

And an amazing sail last night. I learnt a lot, I screamed when the speed got up higher than ever before and I got soaked to the skin. It was fun. Feeling the boat just catch the wind and go pounding up and down through the water.

Seeing and feeling the water surge over the top and splash me, soaking my thru from the waist down and really testing my sailing jacket's "waterproof" status.

It did freak my out a little bit particularly when the speed really got up. And I wasn't 100% comfortable with my buddy - he was new and I'd not met him before. But the cloudy about the storm sailing conditions rocked and I loved it.

I was feeling quite down earlier tonight and woe is me "rock bottom" type (probably a pre-period thing) but writing all of that out I see again once more just how many blessings and good things I do have in my life.

And I feel better.

Kinda Meh and Bitchy

I feel kinda meh and bitchy today. I've been surfing Facebook and thinking everyone else has a better life than me and I've been reading blogs and not able to leave comments because most of the ones I want to leave are not the supportive friendly ones but the "welcome to my world, now you know what it's like" ones. And I could cheerfully have killed someone earlier for moving my chair with the brakes on - when I'd only had them tightened an hour earlier. I just let them do it tho.

My counsellor talks about how I will never not have bad days because they are a normal part of life. But I can't remember what it's like to have a down day that's "normal". I don't know how to tell if I'm having an "average" down day and a depression down day. What I do know is that feeling like this makes me want stronger meds, better meds. Kick depression in the ass meds. I don't think I actually need them tho.

I think when I'm down below 12st in weight I will talk to Dr B about weaning off of baclofen. I am determined to see this year out without missing a single dose of fluoxetine because I know it does me good. But I've been on baclofen nearly two and a half years and I have some concerns about it long term as well as not being sure of the level of efficiency/accuracy it still has.

I've stopped taking all of my supplements because I want to stop overloading my liver and other systems. But I think I will resume the evening primrose oil when I come back from my tour of the UK (and hopefully Ireland).

Trying to get as much of my stuff I need to do "at some point soon" done before I go away - possibly part of what caused my meh and bitchiness of today, overloading myself a bit.

In good news however I did notice something really great about how I look now I've lost weight. Part of me that was hidden by fat is getting to be visible. But that's all I'm telling you ;o)

The River

I've been thinking about sharing this song here for quite a while. It's Garth Brooks and whilst he's not really cool or big here I do have to say that he does have a talent for songs with a meaning and which make me think and feel and wonder. And relate to which is even better. One thing I think we are missing in the UK is music with a meaning, we don't seem to have had any recently. But maybe I'm just missing it and it is actually there.

I feel a bit down today, have most of the day and this is another good song that helps with that.One thing I really like about this song is how it is so like my life - how I am trying to be and to live/view my life.

You know a dream is a like a river
Ever changing as it flows
And the dreamer's just a vessel
That must follow where it goes
Trying to learn from what's behind you
And never knowing what's in store
Makes each day a constant battle
Just to stay between the shores... and

I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

Too many times we stand aside
Let the waters slip away
'Til what we put off 'til tomorrow
It has now become today
So don't you sit upon the shoreline
And say you're satisfied
Choose to chance the rapids
And dare to dance the tide... yes

I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

There's bound to be rough waters
And I know I'll take some falls
But with the good Lord as my captain
I can make it through them all...yes

I will sail my vessel
'Til the river runs dry
Like a bird upon the wind
These waters are my sky
I'll never reach my destination
If I never try
So I will sail my vessel
'Til the river runs dry

Yes I will sail my vessel
'Til the river runs dry
'Til the river runs dry

~The River, Garth Brooks

Sometimes it's hard to be a woman...

I was so fed up and out of sorts yesterday and I didn't really know why or what triggered it.  I just ended up getting into a huge downwards spiral of being sad about all the things that CP means I will never do or that I am unlikely to do.

This morning I awoke to find the red army in town.  And CP isn't an issue today or not such a big one.

I am thankful for evening primrose oil (and to a lesser extent, antidepressants) which make my PMS much, much more manageable than it used to be.

And I am thankful for my CP.  Because there might be a few things CP will mean I won't do but there's a lot I have done that only happened because of CP.