Everyday I click onto Twitter.

For the foreseeable future, it’s my only contact with the ‘real world’ that I have, apart from my dear caring partner and my son when he comes home from University.

Before I ‘found’ Twitter, the world outside, for 5 years had been lost to me.

My life had become a very lonely, desolate and bleak existence.

The last time I had spoken to another person was during a week in hospital and before that?

I couldn’t even remember, it had been so long.

I found myself asking ‘how did my life come to this’?

I used to have a life, a career with great potential, a fantastic social life and lots of people I was proud to call my friends.

So where had all this gone?

How did my life gradually fall away piece by piece leaving me alone, isolated and desperately scared of the kind of life I knew lay ahead of me?

18 years ago I was diagnosed with M.E.

I also have chronic and at times debilitating asthma, which means I have spent almost two decades of my life in and out of hospital.

It has never stopped me from living a full active life as much as is physically possible.

I knew that I was never going to climb Everest but I could live with that disappointment as I had never fancied myself as a mountaineer even when fully fit!

I was perfectly content to have a loving family, a fulfilling career, and an active social life.

In my spare time I worked in the art dept for our local AmDram club which my son belonged to. I loved doing this, it was something I was very proud to be part of.

Once I became ill however, all this started to change.

I no longer had the energy to keep doing all these things and as my health declined I had no choice but to give in, which of course meant losing all the things I loved, all the things that made me….. Me.

The only help and advice I got from my G.P. at that time was ‘I know nothing about M.E., I suggest you go to the library to look for some books for help and advice’.

Wow! I thought, this is fun!

So, I dutifully obtained 3 books, although at that time information on M.E. was only visible by it’s absence, it was still referred to as ‘Yuppie Flu’ for Petes sake!

Once I started reading though, I began to feel like I was not going mad anymore.

I was finally able to see that there was this strange illness, it was real, it did not exist only in my head and I had just been unlucky to have been affected by it.

Pacing yourself seemed to be the main message in the books, ‘learn your limitations and live within them’.

“How am I supposed to do that?” I asked myself.

I had a child that needed caring for, a full time job and a home to run, let alone things to do, places to go, people to see!

So I kept trying to keep it all together, “I’ll rest at the weekend” I told myself, but of course I didnt, and slowly but surely it all drifted away!

First to go were the extra curricular activities.

No more going out, I loved live music and was part of my local scene for years but that had to stop, I would count myself fortunate to be able to stay until the end of the night and then it dropped to being lucky if I could even move after tea time.

Friends who used to visit regularly gradually became less and less before eventually stopping completely.

The household chores started to suffer, it became a choice between helping my son with homework and put him to bed or do the hoovering, I saw to my son.

My partner had to do his share plus mine.

We have always been equal partners, working in unison to keep our little ship afloat but eventually I found myself falling through the door after a day at work and collapsing exhausted and in a great deal of pain.

In the end I was signed off sick.

I just couldnt do it anymore.

As soon as I thought things might be improving, I was knocked back down with yet another virus or chest infection, each time getting a little weaker and yet another piece of my life would be lost.

I had now become so ill and weak I was only getting out of bed once or twice a week.

I’d cram as much in to those day as I could before collapsing back into bed.

I had lost my job, it wasn’t fair to expect them to keep the vacancy open for me, they needed some one who could be relied upon to turn up everyday and not have to be rushed home during the day from being so weak and exhausted.

I couldn’t move fast enough, I wasn’t reliable enough, I had become a liability, it became a waste of a good job and a good wage.

At first I was so ill I really didnt care that I couldnt work.

I decided it wouldnt be so bad being a housewife.

I thought once I’d had enough time to recover properly, I’d get well and all would be fine again.

But that didnt happen.

I tried everything I could to aid my recovery, from acupuncture to yoga, antidepressants and counselling, exercise programs and even reflexology at one stage.

You name it I tried it, I was desperate to find anything that would help me recover but all I did was get steadily worse, until I had to admit defeat and accept my life was never going to be what it once was.

It has taken me many years to come to terms with my life being as it is now.

It has taken five years of being totally bedridden apart from struggling to the loo and back that is, to finally come to terms that this might be how my life is now, maybe for the rest of my life.

Its a hard and bitter pill to swallow but I had to make myself accept it or I would become lost forever in a black pit of howling depression.

On top of all this we now have the government cutting the benefits we depend on in order to simply survive.

My partner has had to stop work to become my full time carer but has since developed his own health issues.

He has just had to fill in his second ESA50 in twelve months, no doubt his WCA appointment will arrive through the letter box any day now, its difficult to fully explain the fear of a brown envelope coming through the letterbox, but anyone who has experience of this will know exactly what I mean!

We have the added worry of him being fairly assessed or will it be the soul-destroying and spirit-crushing cycle of appeals yet again.

My ESA50 could arrive anytime also.

Last year I was put straight into the support group but constantly live in fear of not being so ‘lucky’ this time.

‘Lucky’ to even be in the support group that is!

To be assessed as so sick and disabled that I have been placed among the lowest % group of people on benefits, who are deemed to be so sick and disabled, I’m not expected to have to find work.

But for how long will I be classed as too sick to work?

Especially when people with terminal cancer are being treated as fit and expected to work for their benefits.

Maybe next time I’ll miss out a piece of important evidence on my form or just get one of those assessors who find everyone fit to work.

How will I cope then?

I’ve only been able to leave the house once voluntarily in the last 5 years, how will I be able to manage if I have to appeal any decisions?

We will already be affected by the new bedroom tax now my son has gone to University, plus we have to pay £300 council tax from our benefits.

We may even lose the roof above our heads.

They haven’t come for my DLA yet, I get the lowest care componant so I will be in the Governments target group for re-testing as soon as PIP is introduced.

Chances are, it will be taken away rather than increased (im just not that lucky).

We get no help from Social Services, nor any other support groups.

I get no support from my GP, he gave up trying to help a long time ago, its just the two of us struggling to get by.

Our savings are long gone.

We dont have SKY TV or a big flat screen television or even full internet access.

We no longer run a car, or buy new clothes or even have cupboards full of food.

We barely scrape by, yet the government want to take more away to give us an ‘incentive’ to get us back in to work and not be left on the scrapheap as Government Ministers are keen to remind us.

They could shock me with a cattle prod but it won’t change the fact I am simply just too sick and weak to work.

But I am on the scrap heap however, I am unemployable, (if there were any jobs available) so now it seems in the eyes of the government not only am I unemployable, but a scrounging scumbag as well.

I have no job so I am nothing, a non-person, because without a job you are viewed as something less than human.

You have no identity, no worth, no value, just a leech on society, made to feel guilty for taking from the same pot you had willingly contributed to for many years.

It feels I’m one step away from being classed as a criminal for being so ill I cannot work.

IDS, Osborne, Miller, Cameron, Clegg and Miliband all talk of getting people off benefits and supported in to work, giving people hope and a future.

All great sentiments but where does that leave people like me?

I would give anything to have my old life back, Id love to be able to go to work again, but that is just not a realistic option for me.

What about my future?

Do I not deserve one?

It may not be of any worth to a politician but I have a son and a partner who value me, friends who care about my welfare and who’s lives I feel I am an important part of.

Can you Mr Cameron, can you Mr Miliband understand how humiliating it is to have to beg for every penny I can just to make ends meet?

To hear you repeatedly say I have no value, how am I expected to keep fighting when you want to make it even harder for me?

For those who wish to critisise I challenge them to live a month in my shoes.

Or a week if that proves too difficult.

5 thoughts on “SILENT SCREAMING

  1. Don’t ever give up, don’t you dare let them or anyone make you feel worthless or a burden. You are you, you’re not the condition you are coping with the essence of you is the same as it ever was. Your illness has taken so much away but it can’t take away your self worth unless you allow it. I understand exactly where you’re coming from and your emotions as although our conditions are not the same the situation we find ourselves in is. Fight on and we will fight beside you. Fight for who you are deep down and who you want to be, fight for loved ones. This government are cruel and unjust and the tide will turn against them and you and me and the others that are being persecuted will one day find peace again. Xx

  2. Reblogged this on Sheva's Cross of Change Blog and commented:
    I suffer with chronic fatigue, pstd symptoms and chronic back pain, only managed by connections, with wholistic health practitioners, and the use of herbs, made worse by those in the nhs, and the only recovery i have is paid for as i can, yet the same system that used my ill health, including mental, to try and take my child, now expects me to travel and be assessed for work….. which i can’t. No doubt my online presence may be used to show i could work, well then pay me to do what i do, help us get funding, and then i can continue. I will make no apology for being online in this time, which has always been patchy for the above reasons, perhaps it would be better had i played games or bingo.

    Obviously not everyone with M.E. symptoms were abused as children, but a large number of survivors of child sexual abuse, report fatigue symptoms within groups. I empathise with much of this blog, partly because i have experienced much of the same. At one time feeling, and treated as if i was in valid, was hard to bear. Many over time have turned on me, that could have encouraged, supported or helped in even small ways. Anyway i,m struggling to even fill in forms at the moment, and my back pain is as bad as it gets and worsening, so don’t expect too much of me online for a while, but there are things i’m involved in, that are best dealt with behind scenes, anyway, for now.

    Be as well as possible.

    And a big thankyou to all of the healers that have helped me to function more than my GP told me, in his words i could never expect to stand unaided again. That i do is by your and my efforts and engagement with what is mostly ridiculed by our ‘health service’, just as people are abused within our ‘care’ services. Thankyou to the weeds and herbs, flowers, trees, and to all the teachers who helped me find empowering and powerful techniques and how to work ethically.

    So i guess the easy option is just to send the psyche notes to them, and they surely prove i am too nuts for a job, let alone my true incapacity.

    Thanks too the internet bullies & trolls, which have been noted and currently watched, as it has happened so many times, both realtime and online, that it is evidence, that no matter how far i have come, bullying and further abuse, still has an adverse effect on me, which i am not ashamed of, either. I feel. But as ever out of what seems dark and bad, can come good. and a new opportunity to shed more light.


    Thankyou Baraclebum for expressing so clearly what i,m too tired to say for myself, and i’m sure others will identify and empathise, and those not understanding, get a real feel for what can happen, for me, becoming unreliable, was one of the hardest, i do warn new friends these days, if i remember, or explain the first time i have to back out of something, i had hoped to do, these days, i have to live on might, but its rarer and rarer for me to get to anything. So thankyou and be as gentle with you as possible. 🙂

  3. What a wonderful and heartfelt blog Barnaclebum. Thank you for sharing it and also to Jimmy for hosting it.

  4. Hi Barnaclebum, your name made me smile 🙂 You could have been writing about me. I too have gone through all those emotions, but the one thing I have learned, is that the real you is still there. Constant pain and lack of mobility and loss of being able to do for yourself through Rheumatoid arthritis, takes its toll and changes creep in to the way you perceive life. I was a matron of a nursing home before being struck down and went through the grieving process of not being able to continue working. Many times I have lashed out at those who love me and hated myself for it, the hurt you see in their faces is the killer. That last sentence always makes me cry and is hard for me to acknowledge, even now. It took my granddaughter to be born 10 years ago, to realise that I am the nanny she has always known, she has never seen me walk unaided, but remembers sitting in my lap strapped into my wheelchair going to the seaside or the swing park or the supermarket and being constantly cuddled. Through the unconditional love from Emily, I got the strength to at least get my head back to the old me, the real me. She taught me how to smile again and get some happiness back in my life which in turn made the pain of living much more bearable. Emily made me more aware of the life that lies ahead for that generation, so much so that I got online and made some amazing friends and started campaigning. I have good and bad days like we all do and go through the hoops of trying to secure benefits, but now I do it with my head held high. No one can call me a skiver or scrounger and get away with it, I fight back and I will fight back for those still to find their voice. How powerful is the love we receive from children eh? Much love to you Baraclebum, we are all in this together and thank you for having the courage to put into words what many of us feel, you have a real gift there. A big thank you too, to all the carers, our unsung heroes and heroines. Between my brilliant husband and Emily, they make each day special. <3 xx

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