Unfair Benefits System

Unfair Benefits System

Be prepared for a bit of a rant here because it’s a subject which I have had experience with recently and I can relate so much to the story I am going to share.  First, here is a link to a story about a woman who has just committed suicide because of an unfair PIP assessment.  It’s really heart breaking.

Article

This woman suffered from ME which is something I also suffer with.  It’s a debilitating disease which makes you exhausted constantly, it causes sleep to be unrefreshing which means sleeping does not help or rid the exhaustion.  It causes muscle and joint pain which requires a lot of pain killers and sometimes cannot even be treated with that, it leaves a lot of sufferers bed bound.  It causes a lot of symptoms cognitively, like memory issues, brain fog, lack of concentration.  There is no known cause for this disease, I contracted it after having Glandular Fever.  There is no treatment and barely any research, a lot of Doctors believe the condition to be a mental illness in which the brain signals pain when there isn’t any but recently studies have been carried out which show it could actually be a problem with the immune system not working properly.  It is an invisible illness though, which means it is ignored and misdiagnosed a lot.

I recently had my PIP claim (Type of benefit in UK) reassessed.  I’d been receiving the benefit for two years, due to the fact my severe depression and anxiety had prevented me working.  I have been suffering with ME for close to two years and it’s been a nightmare getting any treatment or help, I have to sleep almost constantly, I get about three hours a day where I am able to do household chores and that’s it.  I suffer with horrible back pain and pain in all of my joints and muscles which I take strong painkillers for and I rarely am able to leave the house.  Despite this my reassessment was rejected.

Like this woman in the above article, I had a face to face assessment.  It was carried out in my home because my anxiety prevents me travelling to places I don’t know.  During my assessment I felt extremely uncomfortable and my anxiety was so bad that I could only give one word answers.  What annoyed me about this face to face was, the assessor never asked questions from a mental perspective, my main issue is mental illness yet she only asked me physical questions “Can you get in and out of the shower”, “Can you dress yourself”, “Can you use the toilet”.  I can do all of these things but as people with depression and ME know, just because you can physically do these things, doesn’t mean you do.  I have no energy to get dressed or take showers, which means I  an go a week without washing sometimes because I am that exhausted and can’t get out of bed.  I need a lot of prompting to take care of myself and this was completely ignored.  I was asked one question about my ME and the assessment was over in 40 minutes.

Three or four weeks letter I received a letter to say my claim had been denied.  I received no qualifying points and the letter I received which explained the decision was disgusting!  It stated that the face to face assessor had written I appeared completely relaxed and showed no signs of anxiety.  This was completely false, I was sweating profusely, my heart was beating erratically throughout and I couldn’t talk.  The letter also stated that because I had not attempted suicide in over a year, my mental state was fine.  This comment is extremely offensive to me and I am so disappointed in my countries benefit system.  Suicide is such a sensitive issue and they basically told me I don’t deserve help because it’s been over a year since I tried to take my life.  The letter went on to say that physically I was able and healthy and did not warrant any further financial help.  It was a completely false report of my condition and it left me devastated.  My Mum went out of her way to appeal the decision and luckily I have a great GP who wrote a letter also.  I know how the woman in the article felt, because I felt the same way, I felt so betrayed and unfairly judged by my country.  These people are supposed give benefits to people who need them, they are supposed to help.  How many people sit on jobseekers allowance and don’t lift a finger to find work, yet they get money ever month no problem.  I suffer with illnesses which may be invisible but they are extremely real and I don’t deserve to be ignored and shoved aside simply because my illness are to complex for the benefits system to understand.

The woman in this article took her own life because some person in an office somewhere decided she wasn’t worth the trouble, that her condition was to complex and since it’s invisible, it can just be ignored and turned away.  I don’t know how this assessor can live with themselves knowing that they ultimately made a decision which ruined someone’s life and made them give up on life and choose death. I used to think my country was a fair one, I used to be proud of my home but I am utterly disgusted by it now.  The government doesn’t care about how unfair their system is, they spend no time investigating the people that claim benefits fraudulently and instead spend their time taking if off people who are vulnerable and can’t stand up for themselves, they force people with invisible illness to suffer and struggle because it’s easier to ignore something you can’t see than to address it and take it seriously.  The woman in the article took her own life surrounded by her benefits letters stating that she was healthy and able, basically calling her a liar.  I know how this woman felt and it’s so saddening because these assessors made her feel like her life was worthless and unimportant, they treated her like a case number and not a person.  People suffering with illness deserve respect and understanding, they deserve to be listened too and treated with kindness, this woman was given none of this and yet nothing will be done about it, the government and the benefits system will lock it away in some filing cabinet and forget about it.

I’d like to say at this point that my own benefits decision was overturned and I did receive my claim.  I had to fight tooth and nail for it, I had to send piles of evidence and statements from people who know me.  It made my mental state deteriorate badly and my illnesses were made worse by the stress and anxiety I had to deal with.  I got no apologies for the way I was treated, no sorry for the completely false statement given by the assessor and no support during the time I had to wait and worry about the decision.  It may have come out positively in the end for me but it doesn’t for a lot of people, so many people are put through more suffering and ignored because their illnesses aren’t common or easy to see.  I’m disappointed in my government and I’m disappointed in the people that are supposed to help us, who are supposed to make out lives easier and help us live independently despite out illnesses.  It’s unacceptable.

 

 

Advertisements
One best friend is better than a bunch of alright friends.

One best friend is better than a bunch of alright friends.

One thing depression and anxiety are good at is pushing people away and isolating you so it has its chance to make you feel worthless and alone.  Before depression, I had a group of about six close friends that I spent time with.  We were a close group of friends and enjoyed going on days out, camping trips and just having fun together.  It seems like a really long time ago now and I miss the days of being able to enjoy days out and socialising with people.  Socialising now brings feelings of fear, panic and general anxiety, and it’s just easier to avoid it, so that I avoid panicking and making myself worse.

After being diagnosed with depression, I hid it from my friends.  It was easy to hide because I became a very good actress and almost became two people, the one I was with friends was happy and confident but once I was home I’d shrink into myself and become quiet and withdrawn.  I began to avoid socialising, cancelling on my friends and making excuse after excuse to get out of plans.  This was about the time I began to self harm because I hated myself, I hated that I was avoiding my friends and isolating myself but I couldn’t stop doing it, depression was in control and I was just left trailing behind doing whatever I could to bring some sense of peace.  Self harm was my way of getting rid of the frustration I felt at losing control and it was away to take out my hatred of myself.  I hated the way I looked, I thought I was fat and ugly so I wanted to rip apart my skin and cause pain and make my outside look as ugly and distressed as my inside felt.

As the months passed by, my friends stopped inviting me to go out and I’d see pictures on the internet of them enjoying themselves and going to events and out for meals, and it made me feel worse.  Even though I was the one who pushed them away, it still felt horrible and I was angry at them for letting me push them away, why didn’t they try harder? why couldn’t they see I was struggling?

In my close group of friends, there was always one who I was closer to and I’d say we were more like sisters, we spent everyday together and she practically lived at my house.  She came on my family holidays and was the one I always went to first for advice.  During the time my depression got worse, she kept asking me about things, she was the one who carried on trying to get me to socialise and get out.  Unfortunately I was too far gone and I refused again and again.  Then I attempted suicide, a stupid and horrible decision I made which I regretted straight after, by that time though the pills and alcohol had started to kick in and I felt myself falling unconscious, this is when I called my friend for the first time in a while, luckily she came straight away, found me and called an ambulance which probably saved my life.  I don’t remember a lot about the hospital, my heart had issues and I was out of it but I do remember she stayed with me all night, she slept in a chair and refused to leave my bedside.  I think it was a shock for her to see me like that, with sliced up arms and practically unconscious, I regret that she had to go through that because of me.

After I got out of hospital I went through therapy and I got in touch with my old group of friends and told them what had happened to me, they were surprised and promised to be there if I needed anything and offered to talk anytime I needed it.  It’s about four years on now and that group of friends became more and more distant as my depression flummoxed between manageable and not manageable.  That one friend who stayed by my hospital bed though, she stuck by me through everything.  I didn’t deserve it, depression made me an awful friend because that’s what it does, it makes you selfish and care less about the people around you.  I pushed and pushed her away, I was distant and horrible but she kept coming through for me, she kept arranging to come and visit me.

In fact, I saw her today, while I’m going through a really awful time with my depression and CFS, and she really made me realise how lucky I am to have her in my life.  She is the only one who stuck by me and pushed back and even though I don’t see her as much as I’d like, she is there when I need her.  I did have a group of good friends and it was great but having that one best friend now surpasses that by far.  I think it’s way more important to have one best friend than a group of friends who when it gets tough, fade into the distance.  I owe a lot to my best friend, she probably saved my life the day I attempted suicide and she has continued to be there for me and make me feel loved when I haven’t deserved it.  It takes a special kind of person to stand by someone with depression and she is my guardian angel.  Depression is a horrible condition, it destroys who you are and makes life so hard, but the people that support you and love you make it a little bit easier to fight.

So thank you best friend, for never abandoning me and for always being there when I’ve needed you.  I haven’t been a good friend in return and for that I am sorry but I will continue to fight and be there for you, the same way you have always been for me.

But you look fine.

But you look fine.

One of the most frustrating things about having an invisible illness is people telling you that you look fine.  I understand that it’s hard to relate to someone with an invisible illness but what isn’t acceptable is when people doubt you, when they judge you and make comments about how you should be doing more and it’s laziness not illness.

I have more than one invisible illness, I’ve suffered with depression and Anxiety for 5 years and I’ve had CFS for two years. Every day I struggle with these conditions and if that struggle isn’t enough, I have to put up with people making comments and judgements because on the outside I look like a normal person.  What’s worse is the feeling that I have to prove my illness to people, that I have to give them evidence in order to get them to believe me.  One of the most upsetting things for me is not being able to work and earn my own money and it’s really hurtful when people say I’m just lazy and want to live off my Fiancé for the rest of my life.  I’ve worked before and before I became ill, I was an independent person who wanted to rely on only myself but illness changed me and I’m forced to live off someone else and rely on someone else to support me.  I love my fiancé and I hate that he has to work and all his wages go on our bills and food before he has any for himself.  I hate putting pressure on him and I hate sitting at home while he’s out working full time to provide for me.

Some people think I’m taking advantage, they think I’m lazy and using my illness as an excuse not to work and it’s really upsetting.  I wish I could give people a glimpse into my day and show them what I have to go through.  I wake up at 11am most mornings and all I feel is exhaustion and aches all over my body.  It takes me an hour to get out of bed because a nights sleep doesn’t refresh my body and I’m still so exhausted that I’m falling back asleep, trying to move all my limbs is painful and requires all my energy, energy that I don’t have.  My depression sucks my motivation and tells me to stay in bed and just die there because I’m useless.  Some days the pain and fatigue is so bad that I do have to remain in bed all day and this often means no food or drink because I’m too exhausted to do anything but go to the toilet which is ensuite and near enough to get to. Most days I have to stay in pyjamas because sorting out clothes and getting changed takes too much of my energy.

If I somehow push through the pain and fatigue, I get up and I make breakfast which is usually cereal because I don’t have the energy to do much more, some days I’m too tired to even do that and I go without.  I take my antidepressants, painkillers and vitamins which my Fiancé leaves out for me, the rest of my medication is locked away to stop me attempting to overdose and kill myself.  By now its 1pm and all I’ve managed to do is get up and have breakfast.  If it’s a good day, I’ll wipe the kitchen down, wash up and tidy the living room up, after each of these chores I have to sit down and rest for 15 minutes to get my breath back and muster the energy to carry on.  Some days, all I can do is wash up and it takes all the energy I have so then I’m stuck sitting on the sofa watching awful daytime television and wishing I could be out and doing things.

At 3pm I see all the children walking home from my window and feel awful because they’ve been up since 8 and learning.  By this time of day, I’m falling asleep again and need to go back to bed, this means I skip lunch.  I will sleep for three hours and then my Fiancé will have to wake me up because it’s dinner time and I won’t have eaten since noon.  My fiancé will have to cook because I don’t have the energy and my head feels so foggy that I will forget to take things out of the oven, or even forget to turn the oven on.  My fiancé by this time has done a full days work and he’ll thank me for whatever little chore I’ve done round the house, even though it’s nothing compared to what he’s done all day.

I’ll eat dinner and spend a couple of hours watching my Fiancé playing video games, games which I used to enjoy playing but now can’t because of the pain in my wrists and hands.  I’ll try to read a book which I love but a lot of the time I’m too tired and don’t have the mental energy to even do this which means I’ll end up falling asleep on the sofa.  Eventually my Fiancé will wake me up and we’ll go to bed, after another dose of painkillers to knock me out.  I’ll sleep for 12 hours and wake up feeling exactly the same because rest doesn’t help me.

So I don’t want to deal with people judging me because I barely have the energy to look after myself let alone stand up for myself.  Their comments hurt and make my depression thrive but there is nothing I can do to alter their opinion because my illness is invisible.  Even people that support and love me sometimes forget how ill I am, because they can’t see it, they think it’s easy to get over, easy to forget I am suffering.  I appreciate everything my Fiancé and family do for me, I hate having to rely on them and I hate being a burden.  I wish that my illness would manifest itself visually on my body so people could see and I wouldn’t have to live with the doubt and hurtful comments but it doesn’t

My illnesses are invisible but they are real and to be told I’m just lazy and don’t want to work is insulting and deeply hurtful.  I shouldn’t have to prove myself, I don’t have the energy to do so.  I don’t want to live like this and people insisting that I do because I’m lazy is depressing.

Exhausted and Hopeless

Exhausted and Hopeless

It’s been one of those weeks again, my CFS has flared up and decided to make me look like the laziest person on earth.  The last two days have been spent in bed, unable to do anything because of the exhaustion and pain.  I hate feeling like I’m lazy but I just haven’t been able to move, so the washing has piled up again, the kitchen needs cleaning and so do the bathrooms.  My Fiancé has been doing as much as he can but he’s busy with work so at the end of the day it’s down to me to catch up on all the chores which will no doubt leave me crashing again, it’s a vicious cycle.

All I’ve managed to do today is have a bath which is so frustrating, and it’s made me ache all over just doing that.  It’s so depressing not being able to do simple things for myself like wash and get dressed, it’s a normal part of the day and for most people takes no energy but just that simple task leaves me out of breath and in pain.  I can’t even remember what I’ve eaten the past few days because I’ve been sleeping most of the time and just grabbing whatever in between which doesn’t help.  It seems wrong that my own body doesn’t care if I’m eating but all it cares about is sleeping, even if that means no food or drink for a whole day.

It makes it worse when professionals come out with “It’s your brain making you think you’re tired and in pain, it’s just your brain signals getting mixed up” because the pain and exhaustion I feel is not in my head, it’s in every part of my body, every inch aches and feels heavy and without energy.  This condition is so misunderstood and under researched that the amount of people who have never heard of it or just tell me I’m lazy is unbelievable.  For a condition which is so debilitating, it’s hard to understand why there is not more work being done to discover the causes and treatments.  I don’t want to lie in bed all day neglecting my house and Fiancé, I want to do normal household chores without sweating like I’m in a sauna and having to sit down because my legs are shaking and aching so much.  I don’t want to sleep a whole day away without food or drink, I don’t want to hurt all over and feel exhaustion in every inch of my body.

CFS is such a difficult subject to explain and I find myself getting more and more frustrated when people say “Just get out of bed and you’ll feel better” “Have a wash and you’ll feel more awake” “Go for a walk and you’ll feel better”.  It’s all rubbish, none of it makes me feel better.  It is the worst feeling in the world to sleep and feel no better when you wake up, it’s horrible when sleep doesn’t refresh you.  I wake up every morning just as tired as when I went to bed and it never stops, I sleep and it does nothing.  It comes to the point where you just don’t know why you bother sleeping at all when it makes no difference, but then your body just decides to sleep anyway.

People ask me “Why are you so tired if you haven’t done anything” and it makes me so depressed and angry because I can’t answer the question, it makes me feel fat and lazy, it makes me feel like the scum of the earth when I see people working twelve hour shifts and I can’t have a bath without needing to sit or lie down after.  What is the point? Why am I on this earth if I can contribute nothing to society.  Even writing this, my hands and arms are aching and my eyes are drifting shut again because I’m exhausted and the sad thing is, I’ll wake up feeling exactly the same.

New Year…Same Me.

New Year…Same Me.

Over the past week, I’ve seen so many posts online about people making new goals and resolutions and I find it really frustrating.  I find the whole New Year period depressing.  Since I was a child I would stay up until midnight and make a wish as the clock struck, to make more friends, to fit in more, to be more confident, to do better at school etc.  As I got older the wishes stopped and the resolutions started, be more confident with people, start working out, find happiness, get a job.  But the past five years, New Years has become more and more depressing for me.  I wish I could wait for the clock to strike midnight and say “This year, I won’t be depressed”, “This year I will leave my anxiety behind”, “This year, my chronic fatigue won’t stop me”.

The truth of the matter though is I can’t make these things go away.  Chronic Illness doesn’t just go away when a new year begins, it follows you.  Sure I could make smaller resolutions like “take up a new hobby”, “eat healthier”, “start planning for the wedding” but it just all seems so useless to me and I know that eventually I will be disappointed because I didn’t accomplish these things and compared to the bigger issues I have in my life, it just seems meaningless.  I see all these people on social media making their wishes and dreams for the new year and now that for most people, it will end up failing, being forgotten in a few months or disappointing and I don’t have room for any more failed wishes and disappointment in my life so I don’t do anything for New Years.

I also happen to have my birthday on the 10th of January and that’s another year older, another year that I failed to accomplish anything and another year of failed attempts and self hatred.  So January for me is a depressing month, it’s a month that if I wasn’t ill or hadn’t seen the lowest points in life, I would maybe look forward too and enjoy.

I envy people that can just make a resolution and do it, without anything holding them back, they’re lucky.  Unfortunately, depression doesn’t take a day off and it sticks to you like glue, pretty the same way anxiety does.  Maybe my Chronic Fatigue will improve, maybe the medical society will finally discover something that can help but I’ll still have lost two years of my life to it, it’s still held me back and in turn, made my depression double.

For me 2017 is another year of all kinds of medication, low periods of depression, frustration at being judged by others because my illnesses are invisible.  Another year of hoping to be able to get a job but being halted by my anxiety and fatigue, another year with pain that has no source and painkillers that don’t work.  It’s depressing but I have to learn to look forward to small things, seeing my family, having a really supportive fiancé who looks after me, having a GP that does everything she can to give me hope and teaching my niece that the world can be a magical place, even if I haven’t experienced it.

So to everyone with a Chronic Illness this year, stay strong and keep fighting.

Week in bed.

Week in bed.

I can’t believe it’s been a whole week since I last posted.  Things all roll into one when you’re ill and in bed all week.  It’s been a really bad week for me depression wise and chronic fatigue wise.  The week started with me receiving a letter that said I was unsuccessful with me application for PIP benefit.  I’ve been on PIP for two years since I had to quit working due to my depression and it’s something that I really value because I am too ill to work at the minute, I’ve tried and the money from the benefits gives me a little bit of independence and a lot of support to live my life.  Reading through the decision letter was something that triggered my depression big time because it was such an unfair decision.  I am still really angry and disappointed that I’ve been judged as I have.  I’d had a face to face assessment with a person who was not medically trained at home, because my anxiety prevents me travelling into town.  The assessor had stated that I seemed fine in person and did not seem anxious at all which is completely ridiculous!  I don’t know how anyone can pretend to know what anxiety looks like if they don’t suffer with it, it’s different for everyone!  I hadn’t slept for three nights before that assessment, I was sweating heavily and could only give one word answers because I was so nervous, I was continually pinching myself throughout because that’s how I handle stress, by hurting myself in some way.  Maybe if I’d pulled a knife out and started cutting in front of the assessor she would have thought I was anxious then!

The letter went on to say that my medication appeared affective because I basically had not attempted suicide in the past two years.  This outraged me and made me seriously doubt the future of my country.  It is so easy for some people to get benefits, people who go on jobseekers who don’t look for work and live off the benefits nicely for the rest of their life.  I cannot get benefits because they think my mental health is stable, because I haven’t tried to kill myself lately and it’s really hurtful.  The whole assessment and decision letter was based on the physical side of illness, the mental side of illness was completely ignored and I can really relate to the issues many people suffering with mental health go through when trying to get financial help.  Mental illness should be given the same rights as physical illness, it isn’t any less suffering because you can’t see it! I feel let down by my government and country, I feel betrayed and not cared for.  I’ve been ignored and refused something that I should be eligible for, simply because mental illness isn’t recognised the same way physical illness is.

So my week started off badly and as a result, my depression was worse than it’s been in a long time.  I felt useless, lost and so stressed about life. Tuesday the doctor rang and told me I’ve got a b12 deficiency so now I have to take tablets for that, which explains why my fatigue has been so much worse the past month.  To top the week off, I caught a cold.  It sounds so stupid, the common cold made me bed ridden for three days.  My immune system has been so weak since my chronic fatigue came on, I catch bugs so easily and I just can’t fight them off.  I caught the cold of my mum who got over it in two days and here I am, five days in and I’ve only just been able to get out of bed, and that’s only to lie on the sofa.  It’s really hard getting bugs with chronic fatigue because on a normal day, I feel ill, achy, fatigued and brain fogged so adding a cold to that is just awful, it completely flawed me and I couldn’t fight it off.  So Christmas is going to be an illness filled one this year as usual.

It’s been a terrible week and it’s hard to believe anything well get better right now, my depression is in its element and I’m devastated that I have to live like this.  I’ve just got to hold on to the little things that make my life worth the fight, like my fiancé who loves me, my family who love and support me and the hope that one day, I won’t have to fight so hard just to live.

How do you notice Depression.

How do you notice Depression.

So today I had an appointment with my GP who’s always been a strong support figure for me, I saw a lot of Doctors but she was the only one who really saw how depression was affecting me.  The last  few months have been tough, I had go back on antidepressants again because I wasn’t coping without them.  I really wanted to get off them and be strong enough to cope but after a couple of months, my mood started to decline quite a lot and I knew I was at risk without them.

Seeing my GP today, I told her how I was felling very low and how my Chronic Fatigue was playing up, she was shocked to hear I am sleeping 10 hours at night and then four or five during the day.  What surprised me is when she looked at me and said “You don’t look well” and it was the first time someone had said that to me.  Depression is an invisible illness and it’s hard when no one can see how you are suffering inside but she took one look at me and knew I wasn’t myself, it was comforting.

My suicide attempts took place at a very low time for me and my GP voiced her worry that I was getting near that point again. I’m sleeping a lot, not eating properly, not leaving the house.  It really shocked me that I hadn’t seen these things, I thought I’d become good at realising when my depression was getting worse but until my GP asked me certain questions like “Are you leaving the house?”, “Are you eating regular meals?” “Are you having more bad days than good?” “Are you sleeping normally?” and all my answers solidified what she was thinking and made me realise that I had completely missed the signs.  I’ve stopped looking after myself, I’ve isolated myself from others, I’ve lost my motivation and enjoyment of things.

She seemed keen at this point to recommend seeing a psychiatrist.  I’ve been offered this before but never agreed, mainly because when I was in hospital after overdosing, I spoke to a psychiatrist and found it a really demeaning and shameful experience, I felt judged and not taken seriously.  I’ve done what the NHS call Good Thinking which is a free therapy service, I went through this three times and was given CBT every time, it never worked.  So at this point the only place my GP thinks will benefit my  severe Depression/Chronic Fatigue is a psychiatrist and I’m at the point where I will try anything.

The whole appointment with my GP made me realise that I’m not as good at seeing my own Depression as I thought I was, it’s a very sneaky condition and it somehow gets past your defences.  Hopefully seeing a psychiatrist will open some new paths for me though, it seems like I’ll be living with this forever sometimes and I don’t want to feel like this for the rest of my life.