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.

A tough week

It’s been a tough few weeks and although I’ve been able to pull some good out of this week and feel like I’m making progress again this week does feel like a tough one.  That’s probably an unfair thing to say but it’s how I feel.

I’m probably biased by the fact I’ve really had a crap day.  The morning was full of me being stressed about the afternoon, the afternoon and early evening sucked  and I felt very much like I was gonna crack up if this continues but after about half six the day got better.  I feel calmer and happier about things now.  In part I think I saw a few glimmers of more being done to resolve my biggest stressor in some news I got late today.

Unfortunately however it’s not something I can sort myself beyond keep advocating as much as I can.  And I feel very strongly that whilst I will blog about this when it’s resolved its inappropriate to do so know.  I have their attention. I want to keep it.

Most of the friends and family I have told have been really surprised and even angry.  There’s been lots of muttering about how ridiculous and inappropriate it is.  And the fact it’s easily sorted.

I’m having enough trouble with my own feelings on the matter. I can’t do anything else.

But… Tomorrow and Saturday are sailing days so I’ll step back, recover, forget about it if I can and regroup to start afresh next week. If two days focusing on wind and water can’t centre me again I don’t know what will


>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
The sack
But it’s taught me
(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
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
But for me
Stability scares
Because I can’t
What happens in
My brain
Which means
I cry lots
And others
I try lots
And succeed
Suddenly from
My brain
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
They all disappear?
And days
Are all grey
Or even worse
(and this
would be a curse)
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

But meds mean
I’m not in bits
Without them
I’d really be that

My body hurts
One way
My mind

Both conspire
To stop me
In my tracks

Suddenly both
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
It’ll wait till

I focus on
I should be


>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.


>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.