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.

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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.

The Voice Inside My Head.

The Voice Inside My Head.

I’ve heard depression described as many things and appear in many forms but for me it’s a voice inside my head.  When people hear me say I hear a voice in my head, they do look at me like I’m crazy but it isn’t someone else’s voice I hear, it’s my own.  It’s a voice that lies in wait for a moment of weakness, like if I have a bad day, If I have an argument with a loved one, If someone makes a comment that’s upsetting, If I fail at something.  As soon as I’m weak the voice comes to life and tries it’s hardest to make me give up, it tries to make me stop fighting.

I’ve had this experience today.  My Fiancé asked me to go out with him for a drink, a completely normal request, couple’s go out all the time but I’ve been feeling down the past few days so I said no.  I always feel guilty for turning him down because he’s a social person who loves going out and I don’t want to hold him back.  Anyway, he became frustrated and said that it was hard for him not being able to do things like a normal couple.  It was a valid comment and after he realised it had upset me, he apologised and said he loved me and he didn’t mean to upset me, he was just frustrated that I couldn’t do something that I would like to be able to do.  It didn’t matter though because as soon as that comment upset me, the voice took it’s opportunity to make it worse.  “You’re holding him back”, “He’d be happier with someone else”, “He is only here because he feels sorry for you” “You’re a burden to him”, “You don’t deserve him” “You’re ugly and he could be with someone a million more times attractive”.  I try to block it out but once it starts it’s impossible to ignore, it’s literally my own voice inside my head demeaning me and making me feel like a failure, like there is no point in trying. “You should just give up” “You don’t have anything to offer in life, why are you here”, “You’re a burden to everyone you meet” “You know that you can’t hold on forever, just give up now”, “People would be better off without you”.  My Fiancé can see me struggling and he’s saying comforting things to me, about how he loves me so much and wants to marry me and have a family but the voice just twists it. “He’s lying”, “He’s just trying to make you feel better, he doesn’t actually want to marry you”, “You will fail him eventually”, “He would be better without you”.  The voice is winning at this point, I’ve been bottling things up like I do for weeks and now it’s using all that stress and frustration to take me down, my own voice trying to defeat me.

This is when my Fiancé did something that surprised me, he made a stupid random joke.  It came out of nowhere but I laughed and for a second it was quiet in my head.  Then the voice piped up again “Why are you laughing, you’re a disappointment”, “You’re ugly and fat, you shouldn’t be here”.  My Fiancé made another joke to get a laugh out of me and again I laughed and it was quiet.  I’ve always looked for someone who can make me laugh because it’s important to me and it’s payed off  because it turns out laughter quiets that voice inside my head.  My Fiancé figured out it was making me better and kept saying things to make me laugh, and eventually that little voice crawled back into it’s hole.

It’s still there now, why my mood is vulnerable, popping in and out of my head but I’ve got over that breakdown and I’m fighting it with the help of my Fiancé’s brilliant sense of humour.

That voice is the hardest thing I’ve ever dealt with though and I’m sure it won’t stay down for long, it will pop up as soon as I’m weak enough again.  It’s the fact that the voice is my own that’s hard, it’s literally me telling me to give up and it’s hard to ignore your own head.  My mind is my enemy, for some reason it doesn’t want me to be happy and it does whatever it can to make me struggle.  It’s a tiring fight, mentally exhausting to try and keep your own mind quiet.  I hope that one day that voice withers away and dies, one day I want to be strong enough to cut it off completely, but for now I have to fight it and hold on to the feeling of being wanted and loved.  I have to let the people around me support me and help when they can because love and laughter will beat the little voice eventually.  Just got to keep fighting.

It always catches up with you.

It always catches up with you.

The lead up to Christmas is such a busy time and it can be quite difficult to keep up with everything.  My Chronic Fatigue Syndrome limits my activities so much but I don’t want it to destroy me Christmas, it’s the happiest time of the year and I want to enjoy it.  Unfortunately if I take part in an activity, it has consequences and the next day the fatigue will hit me and I might not be able to get out of bed.  Today has been one of those days, I slept in till twelve, attempted to get up to meet family but couldn’t manage it.  I was falling asleep standing up and every part of my body ached.

For the last three days I’ve pushed myself to commit to events and it’s caught up with me finally.  Thursday I helped my Mum all day with work and usually this would make me unable to do anything the next day, but the next day was my sisters birthday and I couldn’t let me fatigue stop me from sharing the day with my sister. I’ve let my family down enough and I do whatever I can to make it up to them.  My sisters day wasn’t only physically draining but mentally as well because it involved going out for a meal which with my anxiety is a big effort.  The day left me mentally and physically exhausted but I promised to have my sister around the next day with my Niece to do Christmas things.  I woke up that day and nearly cancelled, I felt dead and I wanted nothing more than to stay in bed and sleep for a week but I didn’t want to let me niece down at Christmas so I got up, I didn’t manage to get dressed and my fiancé had to make all the food and get drinks but I stumbled my way through the day and managed a nap after they had gone.  I know that I pushed myself too much, Chronic Fatigue is about limiting yourself, doing small things and when it feels too much, resting because the more you push yourself, the more ill you will be when it catches up.  It always catches up, you might think you’ve got away with it but you haven’t.  I don’t like admitting that I can’t do something so I do it, even if it strains me, maybe I should put myself first but I’ve never been like that, I’d rather focus on other people and make them happy.

So today has been horrendous, the fatigue weighs me down, my body feels like I’ve ran a marathon and been hit by a bus at the same time.  Mentally I’m exhausted, I can only just manage this post and it’s not my finest piece.  I’ll probably be in bed for the next two days now and it’s frustrating because Christmas is a time to be with family and to be busy getting prepared.  For me it’s about taking part in whatever I can, getting some naps in whenever I can and hoping that my body can keep up and the fallout won’t be so bad.  I feel like after this Christmas I might just hibernate until next winter.

Forgiveness

Forgiveness

I came across a question today “How easy is it to forgive those who have caused you pain?” and it made me think about all the people in my life who have hurt me and how that’s had an impact on the person I am today.  My depression is definitely tied to my self esteem, which has been knocked down further and further over the years by people who have made me feel not good enough.  It’s too easy to hurt people and I’ve had too many encounters to remember but the ones I do remember, they had an affect. So to those people, I address this post.

To the girls at school.  I had a hard time fitting in, I wasn’t as girly or outgoing as most of the girls, I preferred reading and playing imaginary games with myself. Because I was different, maybe I stood out more, maybe that’s why you picked on me.  I never wanted that attention, I wanted to be normal and fit in but you wouldn’t let me.  You sniggered behind my back, made jokes about my clothes.  You made it a point to not sit at the same table as me, sometimes leaving me completely alone while every other table was full.  It was fun to you, you didn’t care that it hurt me, that it made me feel disgusting. I was quiet and shy so you’d make it your mission to embarrass me and put attention on me.  You always picked me last for teamwork, and then ignored me completely.  You made it hard to go to school some days.  I still find it hard to be around groups of girls because I worry they’ll talk about me, that they’ll think I’m weird.  I still get frustrated that I’m not more girly and feminine and I worry that people don’t like me and that I’ll never fit in.  You made me a less confident person.  As a teenage, it’s hard and it’s easy to pick on other people for amusement but what you do can have lasting effects and it can hurt.

To the person I trusted.  You were the first person who made me feel like I fit in somewhere, and that I could trust someone.  You made me happier and livelier, you brought me out of my shell.  I let you in on my most private thoughts and worries.  I don’t know what happened, maybe I played a part in it and maybe I deserve some of the blame for the way things ended but I didn’t deserve what you did after.  You broke my trust and used my innermost worries and thoughts against me, you told other people my insecurities and manipulated them.  You made me cry myself to sleep, you made me pick up the knife for the first time and cut myself.  You made me hate myself so much that I didn’t want to be here anymore, you gave me confidence issues and issues with the way I look that will stay with me for the rest of my life.  You destroyed me more than you know and more that I’ve ever admitted.  Trust is easily broken and you broke mine and threw it in my face.

To my Dad.  You were my best friend, the person I could always count on.  You taught me a lot of things and made my childhood the best I could have asked for.  You were the perfect father until Mum left you.  I know it hurt, I know it nearly destroyed you but I was there.  I helped you, I made the effort and stood up for you.  I made it hard for Mum because I wanted her to hurt, I wanted to make it better for you.  In the end though, you left me.  You walked out of my life when I needed you, when I was confused and angry.  You made your life a priory and the life of your children second best.  You were part of the reason I tried to kill myself for the first time.  You didn’t care that I was sick, you didn’t care that I had tried to take my own life and that rejection affected who I am today because I will never feel good enough again.  I felt like no one would want me if my own father didn’t.  I’m broken because you ripped out a part of my heart.  You’re trying to make up for it now, and I’ll give you the second chance but that rejection and abandonment will never fade, I will always feel unimportant and rejected.  You make me expect disappointment from every person I meet.

Those are the three moments of my life I believe had a real affect on who I am today.  My self esteem and opinion of myself is low because I let these experiences effect me.  I wish I could have been stronger and I wish I could tell my past self to stay strong and ignore what others do and say but I can’t.  Do I forgive these people for hurting me?  Yes I do.  It’s hard but resentment will not help me, it will not make me better.  I forgive these people, sometimes we don’t know our actions can seriously harm others.  I forgive the people who hurt me, I just won’t every forget them or their actions and that’s the sad part.

 

Come on body, don’t fail me now.

Come on body, don’t fail me now.

Chronic Fatigue Syndrome/M.E has really made me feel like a 90 year old woman and at 23 it’s a bit disheartening to feel like you’re an old woman already.  It’s not just the relentless fatigue which makes me sleep half my days away but the pain I feel for no physical reason.  It’s hard going to the doctors and being referred for so many tests and scans to find there is nothing that can explain the pain I feel.  Of course it’s a good thing that my bones and everything are physically fine but at times I wish I could just be diagnosed with something that can be seen and dealt with instead of being told there isn’t anything that can be done apart from managing the pain.

I get the worst pain in my back and when it hits, it’s hard to do anything.  And the smallest thing can trigger it, I can be picking up my niece, bending over or trying to hoover and it starts up and forces me to quit what I’m doing and rest.  I’ve tried heat pads, heat gel, cold pads and even a massaging pillow but nothing helps.  For a long time I was told to just take paracetamol but it didn’t help at all so I was given naproxen and various other painkillers which didn’t seem to touch the pain at all.  I take codeine now and it helps with the rest of my aches and pains and numbs down the pain in my back but it doesn’t rid me of it.  I’ve been doing physiotherapy which I initially thought was helping but seems to have been overruled by the pain in my body.

I’m 23 and I see women my age going for nights out, dancing, doing sports, going to the gym and just enjoying activities and it’s hard to not be able to do those things.  My anxiety stops me going on nights out and limits my social activities but i’d still like to be physically able to do these things.  I used to love wearing heels, it made me feel feminine and sexy, now my ankles are so weak they just give way.

Most days I just sit and internally scream at my body to sort itself out.  I try to overpower it with my mind, maybe if I can just make my brain understand that I’m 23 and there is no reason to be in pain then it will send a memo to my body.  It’s the most frustrating thing, I’ve been told that it’s mental and not physical and that my brain is just telling me to feel pain when there isn’t any but it just seems like a copout, because the pain I feel is real and telling me it’s not really there doesn’t help me.

All I can hope for is that one day my body wakes up and realises that it’s young and agile and not old and frail.  I wish that day would come soon because it’s hard spending every day in a constant state of exhaustion and pain.