For Sylvia -And Her Bell Jar.

‘I've read 'The Bell Jar' twice. I love it.






It helped me realise I wasn't alone in some of the feelings I felt, (and feel) when the depression hits.






I can get through it though. I always do.






I wish Sylvia (Plath) had believed that, because what she had to say about mental illness - about lots of things - was important.






I wish she had written more novels, because I love her descriptions and insight.






It takes a lot of guts to write with such honesty.






Sylvia had more guts than she thought she did, I think.






To me suicide isn't 'the coward's way out' as many describe it.






It's moments of desperation all strung together, to make you feel like you are in a deep black hole that you can never get out of.






Sense leaves you for a while.






Pain and desperation take over, and you just want it all to stop. That's what happened to Sylvia.






Things do get better though. For me they did.






You just have to find the strength to hang on, and take one day at a time.






RIP Sylvia, and as this anniversary of her death comes and goes, I for one, think her novel is a masterpiece and I'm grateful for it.

Image: Google.

#helenswriting

(Please excuse formatting issues. Still trying to solve them).

A Problem Unseen -(Spatial Awareness and Me).

I've been asked what it is like to have spatial awareness problems?

Spatial awareness is the ability to judge gaps, distances, depths, and spaces correctly.

Due to my Cerebral Palsy it is one of the (hidden) things that I find difficult.

Rather than being able to see (and judge) those things, I often have to do it by memory -which isn't a problem if I am in familiar places.

It becomes a problem if I have to go down steep unfamiliar steps, kerbs or gaps. My body automatically braces and I panic, until I've taken the first few steps.

Something like stepping off a train onto the platform is a good example to illustrate the problem, and it is compounded by knowledge of people behind me, who might be in a hurry!

Most people judge the gap between train and platform instinctively. They take such things for granted.

To me, such a gap can appear wider or narrower or deeper than it really is, so I (again) become very conscious of it. Someone has to say to me, 'you're nearly there'...or whatever.

This is obviously a problem if I've had to get out of the wheelchair because a place isn't accessible IN it!

I can walk (a very short distance) on my crutches, (and not at all without them), but it isn't very long before I am in agony, especially if I've had to stand still.

Another example is those horrible stairs with the gaps in, where you can see straight down through!

Hopefully you will be able to imagine why they are difficult.

I have to judge the distance of the gap between steps, but it will be distorted by the gap between me and the ground.

Often such staircases are carpet free, so add to that a fear of slipping!

Another problem is unfamiliar or narrow doorways. I often hesitate before I go through them because I'm trying to judge the space, between me and the door or door frame.

Friends joke that I'm the only person they have ever met that can trip over a door - and I have!

There have been many occasions when I have misjudged the space and one of my crutches (or feet) has caught on a door, and I've fallen over!

In my teens, I was assessed as fit to learn to drive. I was surprised, but knowing how much freedom and independence it would give me, (-VERY precious things, when you gave a disability which compromises them, and another thing many take for granted), I decided to try. I was desperate to do it.

I took my lessons in a specially adapted car, as I am unable to use the pedals.

I found judging the spaces and distances on the road very difficult, almost nightmarish, and as a person who already suffers from anxiety and depression, there was a lot if added stress.

There were some lessons when it was all perfect. Somehow I'd learnt that space in the road. I was calm and able to drive very well, and then the next lesson I'd be unable to judge at all, and I'd end up trimming hedges for the council!

I grew to fear my lessons and feel like a failure even more than I already did. I was often physically sick beforehand, but it was so important to me that I did it and I had a wonderfully patient instructor!

 One day, before a lesson, I just started to shake and cry. 

After discussions with my family we decided that it just wasn't worth it...and we left it open that I would call him, if I ever wanted another lesson. It never happened.

People don't realise the non visible aspects of having a disability or illness. 

They often don't think about the unseen difficulties or the energy everything takes, but just because something isn't visible, it doesn't mean it isn't there and it is exhausting, every single day!

Image: Google

#helenswriting

They Hate You Because...

They hate you because
You refuse to compete
And you still beat them,
Hands and feet.

They hate you because
Where they've fallen apart,
You've stayed strong
And not lost heart.

They hate you because
While they shout and scream
You go your own way
And work for your dream.

They hate you because
While they bask in limelight,
You do the work,
You keep up the fight.

They hate you because
While they scheme and swear,
You get what you want
With reason and care.

They hate you because
While they just hang on,
You will still be there,
When they are long gone.

Image: Google

#helenswriting

Walkies!

Managed a little walk (just to the end of our road) at the expense of my back, and (already troublesome) hips, but it was worth it.

Perfect walking weather - if there is such a thing! Refreshing, but not cold - (or too warm). Either extreme causes problems.

Saw the little black cat at the end of the road, but he ran away from me - (A wise move, hubby says because said cat is likely to be catnapped by a certain Mrs Sims, who misses feline company)!
Ran into a neighbour on her way to the shops.

If I had been in the wheelchair, I would have been perfectly happy to stop and talk to her.
As it was, I thought 'Oh please, nooooo', and then felt guilty, especially since every year (even since her husband's death), she makes sure the 'neighbourhood Christmas Tree' still gets its lights, and that makes me happy.

We did say 'hello' but luckily for me (and my hips), she seemed in a hurry. Even so, by the time I got back down I was in agony and my breath was a bit raspy. It isn't usually that bad, but I had to use my breathing technique for the last little bit, to minimise pain.

It's a technique we were taught in hospital (when I was learning to re-walk). 2/3 normal breaths and a few more shallow breaths, and then a large exhale, and so on. It takes a bit of practice to get right, (and it doesn't always work), but I find it helps me - even if it is just because I'm so focussed on breathing that I'm less aware of the pain. It could easily be that.

We were also taught 'ways to fall' in order to minimise damage, which I almost do automatically now. Although it doesn't always work, because things happen in a split second. Making sure you let your hands (rather than legs/body) take the impact isn't always possible.

When you re-learn walking you have to focus on every step, and there is a part of me which still does that now too, and that is how I manage not to fall often. You become conscious of potential obstacles, different floor types, ground types, and distances.

All of these things I have to think about while I'm walking, which is why I find it difficult to walk and talk at the same time, and why I get so tired, not just physically but mentally too. My mind has to be in so many different places at the same time.

Over the years I've become better at making those judgements, so that I can count my steps as well. Although I only do that on familiar terrain! Counting steps is useful for forgetting about distance. If I focus on the count, the distance is less significant.

One more thing I do, is to mentally divide and mark the ground, (especially if the pain is extra bad). I will aim for the end of each section and not think past that. It's a bit like identifying landmarks. In fact that's exactly what it IS.

Aim for a fence post, the end of a car, a manhole cover, a mark on the pavement or a piece of rubbish, anything like that. It is all second nature now - but as I'm losing what little mobility I have, many of these things won't be as necessary...

Anyway, that's how things are.

Today has been good, and it is Saturday. You know what that means?...WINE!

(Image: Google. - I thought pictures of walking aids were a bit obvious. I prefer the cat)! 

#helenswriting

In the Box...

I'm lying awake making a mental list of things I could put in a box and give to a homeless charity (or homeless person).

So far, I've come up with: Blankets, some pairs of gloves and socks, some chocolate, (I know that foodbanks are always afraid to ask for that, because it is seen by the public, as a 'luxury' item), some fruit, flasks, biscuits, woollen hats, 'Lemsip' type things, (I figure they could give them to people who need them, as and when).

I know they need hygiene products, so I'll try and add those,

Maybe they need pillows too? Maybe teddy bears for homeless kids? I don't know.

I quite often wonder about these things. It doesn't really help me with sleep much, even though it could be seen as a different version of 'counting sheep'!

I have always hated the fact that people only seem to think of the homeless when it is near Christmas time. I find myself thinking about them when it rains or it is cold outside!

It makes us the biggest bunch of hypocrites! 'Oh it is Christmas! Season of 'goodwill to all men', but as soon as it is over, it is all forgotten, and we get on with our lives.

I remember a couple of years ago, hubby and I were in Bristol, (walking through 'Broadmead'), when we saw a homeless man sitting outside a shop. I didn't have any money on me at the time, but I said "hello" anyway.

He looked so surprised, (and said "hello" back). The fact that he was so surprised to be spoken to hit me quite hard. He was obviously used to barely being acknowledged!

I thought 'Actually, that is the saddest thing. The fact that anyone is in that situation in bad enough, but the fact that they almost cease to be people worth acknowledging, is worse!

It's very similar to what is happening to disabled and ill people now. We are nameless 'scroungers'! What we are facing at the hands of government policy is barely acknowledged, and neither is the fact that we are dying in thousands, as a result.

None of this should be happening...should it?

(Image: Google).

#helenswriting

* This is not intended to be a 'Look at me, aren't I wonderful' post. This is a diary entry - written late at night, and I thought 'Maybe this makes some valid points, so I thought it was worth sharing).

A Birthday Wish - Scrap the Work Compatibility Assessment.

What do I want for my birthday? 

It's a question I dread because what I want, what I hope for,- what I really need, can't be bought.

All I want is the Work Compatibility Assessment to be scrapped,  so that no one else (including myself), has to fear it.

We are human beings! We don't choose disability and illness but we have to justify ourselves for the right to basics, independence, dignity...LIFE!

Most people take those things for granted. They can feel safe, wanted and valued in society.

They are not being demonised, lied about and scapegoated by our government, and a mainstream media that is happy to do as it is told rather than report the TRUTH!

Thousands and thousands of people are dead as a direct (and indirect) result of government Welfare 'Reform' policies! Countless more are being left with nothing!

Just because you don't see it on the news or in the papers, it doesn't mean it isn't happening. Likely (if it isn't happening to you), it will be happening to someone you know.

People are living in fear of the letterbox in case it is their turn for assessment. People are having nightmares about that assessment. Nightmares full of judgement,darkness and fear.

I know, because I am having them myself. 

In my case, I'm more frightened of the assessment than the outcome.

It doesn't matter how much I think I know or how much advice I get to try and be prepared. It is still there.

I have Cerebral Palsy which means I cannot walk or stand unaided. It is a condition which won't improve, and actually has started to deteriorate due to constant 'wear and tear' on my body. 

Waking up from yet another nightmare, my muscles are tense and in spasm, which only adds to the (more or less constant) pain I am already in.

I was given (what was) 'Lifelong' Disability Living Allowance in recognition of the fact there would be no improvement in my condition.
At some point soon, I will still have to face assessment in order to qualify for Personal Independence Payment.

When you suffer from depression and anxiety already (as I do), the worry is compounded. The constant 'scrounger' rhetoric hasn't helped either! I am not a 'scrounger' - I am a person, and I didn't ask for this,

I know I am luckier than a lot of people in that I have support. There are countless who are in far,far worse situations than myself, but what I want for my birthday, (the only thing I really want for my birthday), is that NO ONE should be having to go through this in a wealthy society.

Despite what government and media would have you believe, we ARE a wealthy society. At least we should be able to support people that need it.

The fact that we (apparently) can't is not the fault of those who already struggle, it is the fault of those at the 'top'. Why are we paying the price?!

Disability or illness can happen to anyone at any time. No one is immune. I think it is easy to forget that. It is easy to take your ability, your health, your freedom and that of those closest to you for granted, but all it would take is a few seconds or being in the wrong place at the wrong time, and your life could change.

In an ideal world, what I want for my birthday (or a point very soon), is for all this to stop! Unfortunately though, I know it is too much to ask.

#helenswriting 

#disability 

#WCA

 #IDanielBlake 

Being Realistic - A Response To The Scrapping of E.S.A Re-testing

Today, some big disability campaigning groups are celebrating because re-testing for ESA (Employment Support Allowance), has been scrapped, for those with long-term conditions.

'They' think it is because of their pressure and 'power'!

As a person with Cerebral Palsy, and a 'campaigner' for twenty seven years, I'd like to put forward (what I see as) a more realistic opinion. 

Although these days, the opinions of lifelong campaigners (and those with lifelong disabilities, are often not considered). Those who shout loudest get heard.  

In my opinion , it was not not a 'win' -for several reasons:

1. Only one 'benefit is effected. Those who are on PIP or still waiting for changeover from DLA to PIP (which includes myself and SOOOO many others, are still in the same situation as we were yesterday.

Those of us with lifelong conditions/ 'lifetime' awards of DLA, are STILL facing retesting -and FEAR.
For me, it is NOT any sort of victory until EVERYONE is safe -and that includes from things like Bedroom Tax and Universal Credit TOO!

2. The reality of it is that most likely that the backlog/cost of repeated retesting/assessments is getting even more out of hand. When you add the appeals process to that, (and the fact that so many people are getting DWP decisions overturned), they realise they cannot deliver, so they acted to cut the backlog.

3. Every assessment costs MORE THAN IT SAVES. By the time you take 'Mandatory Reconsideration' and any appeal tribunal into account they are losing money -(which we did point out)!

4. The government claim that they have done this to cut down on OUR stress! NO. If that was the case, it would have been done in all the years before, It hasn't been, so why now? Because it suits them! It differentiates clearly between Cameron's leadership and that of Theresa May. It makes the new leadership LOOK compassionate and inclusive. It's all PR! It has NOTHING whatsoever to do with us!

5. How do you know that they're not just throwing us a bone to distract us, - while they plan something worse and hit us with it later? It wouldn't be the first time! Also, where's the confirmation of how and when this is going to happen - from sources other than media? As yet I haven't seen any. There are no firm details on anything YET.Misinformation is rife - and I for one, am inclined to take everything this government says or does, with a large pinch of salt! 

6. At this point also I would like to mention that it was only a few days ago Labour announced it would scrap reforms on assuming power. Could it not be that this government are getting in first, in a bid to secure re -election in 2020?!

Just some thoughts!  

Likely I will be accused  be of 'trouble-making' (once again), by daring to offer a different opinion, but I'm going to say it anyway!