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A Carers Thought's

right from the start, you were a thief, you stole my heart

Monthly Archives: February 2013

Does anybody else get sick to death of saying this when in reality all you want to do is scream at the top of your lungs “NO I’M NOT OKAY, I’M KNACKERED, I HAVE A TO DO LIST LONGER THAN MY ARM, I AM WORKING THE EQUIVALENT OF TWO FULLTIME JOBS, I NEVER HAVE TIME/MONEY FOR MYSELF ANYMORE, I BARELY EVEN THINK ABOUT MYSELF ANYMORE, NONE OF YOU UNDERSTAND OR CONSIDER THE IMPACT THAT CARING HAS ON MY LIFE AND ON TOP OF ALL OF THIS I HAVE TO LISTEN YOUR BULLSHIT MOANING ABOUT COMPLETELY UNIMPORTANT THINGS”
But instead I contain myself, simply think these things and say “yea I’m fine thanks how are you”.
I wonder how much longer I will put the brave face on, how much longer till I finally snap and scream this into some poor unsuspecting persons face?!
The real trouble with somebody asking how you are is that few people genuinely care about the response. Contrary to what you may believe after reading my other posts(!), I hate moaning in real life, I hate showing any sign of weakness or that I am not coping. I genuinely find it hard to talk about the reality of my life particularly in work, I am probably shooting myself in the foot with this as maybe they would be more considerate and understanding if I opened up a bit more.
At the same time, I don’t want to be one of those people who is always moaning, ultimately, I don’t think I need to worry about this as much as I do, because genuinely, I don’t think my colleagues care or will ever truly get it.
When I almost cut my shifts to 4 instead of 5 last year, one of my fellow managers asked me why, I told him that it was to allow me to care for Si better, he huffed and said he wished he didn’t have to work so much.
Nobody would say these things to a mother or father and its basically a similar situation but no one would ever question their right to work less or ask why. This exchange demonstrated the sheer lack of understanding/compassion on their side.
Wow, I had more to say on this than I thought! Sorry for rambling on and please do comment, good or bad!
Thanks for reading,
Take care

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Great writing, why wouldn’t you be a feminist?!

the paper

Feminism may not be as bad as your mother thinks it is
by Monica Cruz
Web Editor

I remember the time I casually mentioned to my mom that I was a feminist. Considering that over the years my mom has definitely shed a lot of her more conservative beliefs, residual from her born-again Christian upbringing, I didn’t expect her disapproving reaction. “Monica, you really shouldn’t call yourself that. You’re a feminine, heterosexual young woman, people are going to think you’re some butch chick who tries to act like a guy.” I promptly recited the definition of feminism, which according to the Merriam-Webster dictionary is “the theory of political, economic, and social equality of the sexes.” I asked her if she agreed with this idea and she said she did. “Congrats Mom!” I exclaimed, “You’re a bra-burning, butch feminist.”

Why are women so hesitant to label themselves as feminists when they…

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I feel like this all the time!

Correlation ≠ Causation

In the past few weeks, I’ve been nonstop experimenting with cooking and baking, scouring the internet for interesting recipes and itching to try making dishes I’ve always dreamed of creating but never had the initiative to attempt. But each time I open allrecipes.com or put a baking tray in the oven, despite how much I’m enjoying myself, I can’t help but feel a lump forming at the back of my throat.

As someone who consciously tries to shed gender roles and sexist mindsets from everyday behavior, mindsets, and conversations, I have never been more cautious about expressing a hobby like this before. I think there is an enormous amount of importance in our individual efforts to peel away the weathered, outdated stereotypes we give to certain genders, and allow people to make their decisions and life choices independent of society’s expectations for them. People have told me in the past…

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Love this blogpost, puts my thoughts into words!

Slutocracy

This might seem too obvious to a lot of you who’re reading this, but internet comments as well as the ignorance I’ve seen in real life kind of inspired me to write this. Weirdly, women slut shame and victim blame more than men (in my experience); with men, the only ones who victim blame seem to be doing it for darker reasons, such as excusing violent behaviour by other men or themselves. This post isn’t aimed as these (thankfully very few) individuals. So I’m aiming this at other women.

It’s pointless

Girl, you might feel superior snickering at your colleague’s short skirt or bullying that “slut” in your History class. But see that girl sitting at the back? She calls you a slut behind your back. That woman in reception calls her a slut in that prim, proper voice of hers. That Asian woman over there thinks you’re all sluts…

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As I mentioned previously, I am a carer to my partner (Si) so I thought it only fair to give a little background on his condition, where we are now and where we are headed.

Si has a bad back. This instantly makes people say ‘I have a bad back’ ‘I know so and so and he has a bad back and he gets all this money but there’s nothing wrong with him really’ and other such rubbish. Whenever somebody asks what is wrong with him (despite it being none of their business) and we give them the simple answer above, this is the reply we constantly hear.

This is understandable as most people are likely to experience some form of backache or back problems during their lives but it is incredibly frustrating and we feel as though we are constantly defending ourselves. People can’t seem to grasp the notion that there is having a bit of backache after a long day and being completely disabled by the variety of problems someone like Si has.

So, where to begin?! Si has dehydrated discs, a herniated disc, arthritic growths on his spine which are pressing on the sciatic nerve running down his left leg, an old fracture to his coccyx that didn’t heal correctly, arthritis in his left hip and most likely arthritis in his hands and shoulders from using crutches. These are all degenerative conditions that will only get worse with time.

I’m sure we can both agree this is a little more than a bit of backache.

As soon as he stands his leg and back will begin spasming, this has recently spread to both legs showing a significant deterioration, this makes walking extremely painful and difficult. His left leg is very stiff nowadays, he can’t lift it more than about two inches, which makes even getting up a kerb very hard and makes it a tripping hazard.

The spasming can also make it very hard for him to get to the toilet in time, particularly if he has waited till the last minute to go.

He can no longer bend to wash himself or dress himself. He can’t cook or clean, finding it very hard to stand for long periods of time.

His life basically consists of sitting/lying on the bed/sofa, taking his medication (currently 28 tablets per day and morphine as required), asking me for food/clothes/help and most of all pain.

It is no wonder that with the stress of the tribunal, finding out that his consultant can do no more for him and that he is condemned to this “life”, he is now considered depressed. When we found out that we would have to go to a tribunal, he was on the verge of suicide (literally, he had planned it down to the last detail). I had no idea what I would find when I walked in after work, I have never been so scared in all my life.

This may sound dramatic to some people but he felt as though there were no other option. He felt betrayed by the government, they had thrown him on the scrapheap at the same time as saying ‘there’s nothing wrong with you, you lazy scumbag’. At least that was how it sounded to him. He was in the dark fogs of depression and genuinely could not understand why he was in this position. I have never seen him cry so much in all my life and I hope I never will again. It was truly heartbreaking.

Anyway I digress, sorry! The good news is that he is now seeing a psychiatrist and gets on very well with him. He is helping Si to come to terms with the fact that this is now his life and helping him to overcome the shame, stigma and guilt that comes with disability.

In other good news, we now live in an adapted bungalow which has improved his life immeasurably, in our last home we had a bath and he could not get into it so I would wash him down whilst he stood against his walking frame, here we have a walk in shower in a wet room. Things like this have made a huge difference to his quality of life, which I am very grateful for.

Si is a proud man, he has served in the army and the police force, both no doubt contributing to his current circumstances. When I first met him he had just been signed off sick with his back but it didn’t affect him too badly, he could walk completely unaided, walk fairly long distances, go out whenever we felt like it, he took very few painkillers and was generally a healthy average 29 year old.

When I think about those days, its really hard to believe that our lives have changed so much in just six years. I worry about what the next six have in store for us.

At the moment, Si is coping on crutches or a walking frame. We are reaching the stage now that he really needs a wheel chair to use on the worse days or to enable us to go further and go out together more often. In reality I expect he will be in a wheelchair full-time within the next three years. It won’t change how I feel about him, but I know it will affect our relationship as he will be even more demanding (through no fault of his own).

I don’t know how much longer I can continue to work full-time as its exhausting as it is. We are also looking into having a carer come and visit the house while I am in work as it is getting too much for him to even fetch his dinner from the fridge. We are at the beginning of this process, I don’t know how long it will take or even whether we will get any help, but I do know that we can’t go on like this. I do as much as I can for him but it’s just not enough. He needs more than I can currently give him and that’s not fair.

I hope that this has given a small insight into our closed off, lonely world and may offer a bit more understanding of  living with disability.

Please ask any questions in the comments, and let me know what you think!

Thanks.

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ESA is an out of work sickness benefit provided by the government and has replaced Incapacity Benefit.
I’m sure that most people are aware of  ATOS and their involvement in this transition but I wonder how many people understand the differences and major problems with this relatively new benefit. The first major difference is that they split the recipients into two different groups. One is called the support group and the other is known as the WRAG  (work related activity group).
When in the support group, it is understood that you are not fit for work, there is no time limit on how long you can claim for and you receive a higher rate than the WRAG.
In the WRAG however, they limit the time you can claim to a year, you must attend the job centre to see an adviser and begin the process of getting back to work, you can be placed on the controversial ‘mandatory work activity’ and you receive less money.
I agree that on the surface this sounds like a fairly good system as their are many illnesses and accidents that will stop you working for a year or less.
The big flaw in this system is that very few people are put into the support group and most people have to appeal again and again until it is at the tribunal stage. Around 40% of appeals succeed in a tribunal ( http://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-appeals).
This is a very high rate considering what you go through to get to this stage. You will have submitted your form which describes your disability/illness and how it impacts on your day to day life, they will have received information from your own doctor and possibly specialists, you may have attended an ATOS medical (which are very questionable but we will visit that again another time!), your form will have been reviewed and “marked” by an ATOS nurse and you will have appealed, probably submitting yet more evidence (gathered at your own expense).
After this supposedly thorough review and investigation, 40% of appeals still succeed, does this not show that the system is not working?!
Another major flaw is that even when people are found fit for work, and want to get back to work, the support is not there to help them and there are no jobs around! Even if you want to work and are capable, the likelihood is that you won’t be able to! Particularly if your employer would need to make adaptations or allowances for your illness/disability.
My partner is currently at the tribunal stage. His payments were stopped in September last year, right after he lodged a late appeal due to not being informed which group he was in. Despite having degenerative problems, losing a lot more mobility, being awarded higher rate DLA care and mobility, he was still placed in the WRAG again. His medical records from ATOS stated he had an illness we had never heard of, upon going through his personal medical records, he had never been diagnosed with this mystery illness!
He spoke to them two days ago to check the procedure for submitting evidence, and was informed there is still another 4/5 month wait until his hearing. We are lucky, because I work and because of his DLA we can get by, we don’t have luxuries, we can’t afford new clothes or valentines presents and things like that but our rent is paid, we pay our bills and we usually have enough food to last. The ESA he is entitled to would make a big difference, it would allow me to work less and actually care for him.
The tribunal process is long and daunting. We have visited the CAB and the woman there was wonderful, fully convinced that the decision would be overturned, in fact everyone we meet concerning this feels the same.
We have sent off our evidence and now have a long wait to see what happens. This is our real life example of government systems. My partner is left at home all day, 5 days a week, struggling, he can’t cook, clean himself and struggles to even get around our bungalow. This is not fair and can’t continue. He is not lazy or a shirker, he has served in the army and the police force, this is the thanks he gets. If he was able to work he would be, there is nothing he wants more.
This process is a lot of unnecessary stress, money and time. Surely we can find another way of doing it?

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Hi there!
Thanks for reading! I’m a carer to my partner and I also work full time in a restaurant, this blog is mainly for me to let off some steam and hopefully build a picture of my life.
Caring for my partner is exhausting and time consuming as is work, so I can’t promise to blog everyday etc etc and to be honest, this page is more likely to be a rant page.
My interests are feminism, reading, Diy, p!nk and anything pink!
Sorry if I ramble on and please tell me if I offend as I will never do it intentionally and we all have to check ourselves from time to time.
Take care, until next time
Xxx

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