Journals: Good or Bad?

Journals: Good or Bad?

I saw something on television today about how keeping a journal is potentially harmful because it makes you stew in your own feelings and accept negative emotions rather than confronting them and changing it.  It was all about how writing about your feelings and emotions doesn’t actually affect them and that there is no advantages of writing about your misfortunes.  While I accept that opinion, I don’t agree with it.

I started writing in my first journal when I was 12 years old and I have every journal I’ve ever written in, saved on my bookshelf.  At first a journal was just a way for me to express my frustration and feelings during my teenage years and moaning about school and friends, talking about who I had a crush on and how I planned to make them marry me.  It was immature fun and it gave me an outlet, I didn’t have many friends as a teenager and my journal was in a way, my best friend.

As I got older my writing became more serious and reflective, it was about expressing feelings that I couldn’t express to people, talking about my worries and fears, and my dreams and hopes. I felt lighter and free after writing about my feelings, it made things easier for me.

Now, reading back through my journals has proved really useful, not only does it remind me of little happy moments I’d forgot about, it showed me how depression entered my life.  I was diagnosed with depression at 18 and I’d always believed that it had started at 16 after my parents divorce and after I’d been through some bullying.  Looking back at my journals though, I can see now that it affected me long before I realised.  When I was 13 years old, I wrote about killing myself for the first time and periodically after that, I mention not wanting to live and wanting to give up on life.  I wrote more often between the ages of or 12 and 15, and it was all very depressing and now I’ve come to identify my depressive behaviour, I can see that I was depressed long before I realised.  It wasn’t just normal teenage hormones and mood swings, it was a constant feeling of darkness and I described it in my journals as this blackness inside me, that tried to ruin any happiness, I wrote about not enjoying life and feeling not well.

Reading back has helped me, it’s showed me that my depression isn’t because of my parents divorce or being bullied, it doesn’t come from a negative or traumatic experience, it just is.  I didn’t believe in depression as a biological illness, I always thought it was triggered by trauma and I felt guilty for having depression when I knew that some people had experiences a loss worse than mine, people have it a lot worse than me.  Now I think that maybe depression was just always there in me, maybe I don’t have to feel guilty about feeling the way I do when I have so many good things in my life.

Reading back through my journals has also helped me understand where my anxiety stems from, I was always a shy child and I preferred books to people and I enjoyed learning new things, which made me different to other kids and kids can be cruel to someone who is different.  I let classmates walk all over me, I let them say mean things and laugh at me, and I did it because I wanted to fit in.  I tried to follow the trends and change myself to be more like my peers but it never worked, I was always still singled out and it caused me to sink into myself and choose to avoid rather than confront.  I started to run away from situations instead of standing up for myself and that’s why my anxiety has come to be as bad as it is.  One of the things that stands out most to me in my journals is the days I would fake being ill to get out of school because there was a presentation that day or a group project and I was terrified of being humiliated so I did whatever I had to do to fake sickness and get the day off.  I wish that I could go back now and just face my fears because by avoiding them, I never gave myself the chance to prove I was good enough, I made it impossible to build my self esteem and confidence because I found it easier to hide away.  It’s really sad to think that I was so terrified of my classmates opinions and actions towards me and I wish that I had been stronger and stuck up for who I was instead of hiding and trying to change myself into someone else.  I’m 23 now and ever since the age of 12, I’ve avoided any experience which I thought could cause me humiliation, and by doing this, I’ve never given myself the chance to prove my fears wrong.  Just because some kids at school laughed and said horrible things, doesn’t mean everyone is going to do the same and even though I can see that logic, it doesn’t help me because I’m too used to thinking that people will dislike me, so I avoid people and situations where I could be vulnerable.  Just being in public makes me panic, because I have so little confidence in myself and I see people laughing, and think they’re laughing at me, I see people talking and automatically think they are making comments about the way I look or behave.

My journals have shown me where I went wrong, they’ve shown me that I shouldn’t feel guilty for being depressed when I’ve had a much better life than some.  They remind me of better times and make me proud of some of the things I’ve overcome. That’s why I think journals are beneficial, especially when you suffer with a mental illness because you can track your mood and identify triggers and behaviours that may signal a relapse.  It’s like writing this blog piece, it lifts a stress from my shoulders and allows me to say what I want to say without that face to face fear of judgement.  It allows me to reflect and think clearly which is really helpful.  I don’t know how I would have got through most of my life, if I didn’t have a journal to write in.

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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.

 

 

Sometimes, Opposites really do attract.

Sometimes, Opposites really do attract.

I’m not sure how I, the shy, antisocial bookworm ended up with my Fiancé Johnny who is outgoing, sociable and ambitious.  We are opposites in every way, he enjoys going out with friends, meeting new people, keeping fit.  He is positive and ambitious, always looks on the bright side of things and keeps himself motivated.  I on the other hand hate socialising, I always see the negative in a situation, I prefer staying in to going out, reading to socialising and my expectations of life are low.  Despite this, we seem to work.

I met Johnny online shortly after my third suicide attempt.  My family had encouraged me to join online dating sites because my anxiety and depression really limited my abilities to meet people and I’ve always been extremely shy.  I’d had a couple of bad experiences with online dating before meeting Johnny and I wasn’t really looking or hoping for anything.  I was in a really bad place, I’d attempted suicide a month before and as a result had to give up my job.  His message was straight forward and simple, he started off commenting on how we both had an interest in the WWE, it was innocent and not at all like some of the inappropriate cheesy messages I’d received before. Talking to him made me forget what was going on around me and I felt like a normal 20 year old.  It wasn’t long before he asked to meet me and he lived half an hour away so it was perfect.  I almost didn’t agree to that meeting, I was struggling with depression and I didn’t want anyone being dragged down by me, and I didn’t want to embarrass myself.  It was my Mum who pushed me to meet him, she told me that sometimes we have to take a leap in life, and if it didn’t work out then at least I gave it a go.  It was at this point I told Johnny about my anxiety, I couldn’t just go out to dinner like normal people and for the first time, it didn’t put someone off and we agreed to meet at a park which was quiet and pretty.  My mum drove me and I begged her to turn around and take me home, my anxiety was crippling me and I didn’t think I would be able to go through with it but my mum pushed me and dropped me off.  I’ll never be able to thank my Mum enough for pushing me that day.

Three years later and we’re engaged.  Johnny came into my life at an extremely tough time and sometimes I think he was meant to find me then because he saved me.  I had resigned myself to being alone, depression is a hard illness to cope with and it takes it’s toll on the people around you.  Johnny never swayed though, he remained patient and understanding.  He came to my doctors appointments and learned about my medication, eventually taking over the responsibility of making sure I took my medication and keeping it locked away so there was no risk of me overdosing again during low periods.  There is a six year age gap between us and he’d experienced a lot more of life than I had, he’d been through all the partying and dating, he’d had lots of girlfriends.  I’d never been to a club, never really drank alcohol and had one relationship in my life.  We couldn’t have been more different but it worked because he pushed me and encouraged me to do things I’d been too scared to do.  He took me shopping and to the cinema, he pushed me to go out for a meal with him and to stay at his place at weekends.  It seemed like nothing to other people but my anxiety had stopped me doing these things for so long and he pushed but never forced me to try new things and he never left my side doing them.

Johnny is the most amazing man I’ve ever met, he’s been through his own share of troubles but he’s always made sure I was okay first, he’s done everything he can to support me and help me recover.  Depression is a terrible illness and it doesn’t work on a schedule, I’ll have good months and bad but Johnny never gives up and he reminds me every day that he’s not going anywhere.  For the first time I feel comfortable being who I am in front of someone, I don’t have to put on an act or pretend to be anything I’m not.  Johnny continues to be this upbeat, positive and ambitious person who encourages and motivates me.  He may be my opposite but I’m thankful for that because If i’d ended up with someone just like me, I’d never have had the courage or motivation to be better, I’d never have experienced some of the things my anxiety prevented me from doing.  It works both ways too, being with me has calmed him down, he’s not the same party animal who enjoyed drinking too much alcohol and being an idiot. Johnny helped me recover and heal and I helped him settle down and realise what he wanted.  We may clash and argue about the little things, he may listen to his dance music too loud and bore me with his football talk and war movies but I’d never want to be with anyone else.  He is my soulmate and no matter what comes at me, I know he’ll be there to help me through it.

So sometimes, opposites really do attract.

Self Harm Isn’t a Joke

Self Harm Isn’t a Joke

I first self harmed at 15, I tried it because at the time there was a trend of cutting words into your arms.  It was seen as rebellious and cool, I did it once and forgot about it.  That is, until I was 16 and being bullied, I turned to it again, but this time I did it because I felt so unbearably miserable inside and I wanted to make it seen, I wanted someone to see my pain and help me.  It was just a couple of times and then I gave up because I didn’t have the courage to carry on, I was squeamish and hated pain.

I often wonder what would have happened if I hadn’t had those experiences, what if I had never tried it? But I did and for some reason it stuck with me and at 18 I began self harming again, but this time it wasn’t an experiment, it was serious.  I had a trusty knife, always the same one, sharpest I could find and I started off cutting once a month, then once a week and eventually it became a night time ritual.  It was my way of purging the hatred and depression inside of me, the pain no longer got to me and seeing myself bleed brought me relief.  My favourite place to cut was my arms, it was easy and accessible, I wore long sleeved tops and jumpers for months before anyone found out what I was doing.

I eventually learned that my arms were too visible, I didn’t want people to see what I was doing, I didn’t want people seeing the ugliness.  So I began cutting my thighs, and it’s still my go to spot.  The thing with self harm is, it’s never enough.  I started out cutting little scratches, not enough to bleed, and then it wasn’t enough so I cut deeper and deeper, I demanded more blood and more pain.  I’d let my scars scab over and then cut them open again and again.

For me, self harm is a way to relieve myself of the feelings that threaten to kill me inside.  I’ve gone weeks and eventually months without self harming but when my depression gets bad and I don’t know how to keep going, it’s the only way to purge myself.  It’s the only way to let out my anger and hatred.

What upsets me and makes me really angry is people who trivialise self harm.  This week I saw someone I know, who has never self harmed post on the internet, claiming that they self harm.  It made me really angry because so many people today see self harm as a way to get attention, to gain sympathy and cause a stir.  People who pretend to self harm for attention, make it harder for people who actually self harm to get help.  I’ve seen pictures posted online, people who have self harmed and uploaded it to the internet for everyone to see.  I’ve never openly displayed my self harm, even when it was cool to do, even when I wanted for someone to see it and help me, I still hid it.  It probably seems hypocritical now, because I’m writing about it online but I’m doing it because I really believe that self harm gets pushed aside and ignored too much.  I self harm because I feel such a dark feeling inside, a soul crushing heaviness that kills any happiness I feel.  I don’t do it because it’s rebellious or cool, I don’t show everyone I meet my scars to get validation or attention.  Self harm is serious, it’s a sign that someone is struggling so much, they choose to go against everything in their nature and hurt themselves.  Human nature is to protect ourselves and ensure out species survives, when someone self harms, they go against all of this because they see no other way to rid themselves of the feelings inside.

People will walk past me in the street and they would never guess at the scars that hide beneath my clothes, scars that I have to look at for the rest of my life, scars I’ve tried to hide with tattoos.  I’ll never forget the first time I showed my Fiancé.  The first time I agreed to leave the lights on as I undressed, the feeling that he would look at my scarred skin and think I was ugly.  Self harm isn’t something you do to gain popularity, it isn’t something to make a joke of and flaunt about.  Self harm is serious and deserves to be seen as such.

Criticise

Criticise

I noticed that today’s word prompt is Criticise which is a term I know well.  To criticise someone is to indicate fault or express judgement.  Mental illness unfortunately invites criticism more than most.  Nobody likes to be criticised but when it happens in relation to something you can’t change then it’s even harder to deal with.

“Why can’t you just be happy?”, “Can’t you just snap out of it?”, “You should try thinking of good things instead of bad things”, “Just don’t let it beat you”, “Can’t you see what a good life you have?”, “Take up a new hobby, you’re just bored”, “You’re not ill, you’re just tired”, “Don’t be anxious, there is nothing to worry about”, “You can’t let your problems stop you doing things”.

It’s all words I’ve heard since being diagnosed with depression.  As if it isn’t hard enough fighting your brain constantly to carry on, people think that making criticism or judgement will help.  There is offering advice and support and there is criticising someone for the way the live with illness.  I hate being told to just smile and get through it, to snap out of depression and stop letting it effect me so much.  I don’t have a say in how my depression affects me, I can’t just wake up one day and say “Today I’m going to be happy and depression is in the past” and that’s what makes an invisible illness harder, having people criticise and judge you because physically you appear healthy.

Even worse is the people that criticise when they have no experience in the matter, people who have never been affected by depression will criticise the way I handle it, they will tell me I’m dealing with it in the wrong way, that I’m not trying to recover properly.  It’s one of the main reasons I don’t think CBT worked for me, I went through three separate courses of the therapy and it was degrading being told I wasn’t putting enough effort into getting better, that I wasn’t trying to change my life when every day it was a struggle to get up and carry on living.

I spend most of my time at home, my anxiety limits my activities a lot.  It makes me feel isolated and weird because I don’t react the same way as others to situations.  I can’t just get up and go out shopping, I can’t go to concerts or to a place with groups of people.  Then people come along and say “But what are you worried about? nothing bad is going to happen” and expect it to fix everything, they expect that if they tell me not to worry then all of a sudden my anxiety is going to just turn itself off.  When it continues they get angry and frustrated at me because what they’ve said has had no effect and they criticise me for not trying.

CFS means my body is aching and sore all of the time, I am in a constant state of exhaustion and need roughly 14 hours of sleep to function for just three hours, then I need to sleep again.  Yet sleep doesn’t refresh me, it doesn’t make me feel better, it just charges my body enough to do the bare minimum and some days I can’t even do that.  “You’re just lazy” ,”You just need to sleep better”, “Go to bed earlier”, “Do more work and then you’ll wake up eventually”, “You’re only tired because you’re not doing anything or going out”.  It’s amazing that, for a condition with very little research or treatment, that some people think themselves experts and think they are in a position to criticise.

Criticism can be a good thing if it’s constructive, if it’s advice or a suggestion to help.  Criticism that just aims to judge and point out failure is not helpful, it’s harmful.  I have to listen to it everyday in some form, sometimes from people who love me and don’t realise what they are saying is hurtful.  People with a chronic illness have to deal with enough, without people adding judgement and criticism to make them feel even worse.  Everyone you meet may be struggling with something and unless you know their situation and how they feel inside then you have no right to judge.  It’s hard enough fighting something that I can’t see, I don’t need to be criticised and judged for the way I fight it.

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.