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.

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.

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.

Books are my medication.

Books are my medication.

Sometimes my Depression gets the best of me even though I’m on medication which is meant to stabilise me.  Medication is all good when it works but I find that sometimes my mood drops for no reason and it’s up to me to fight through it with willpower.  My Doctor always told me to try and distract myself when I was feeling particularly low, and I tried a lot of ways but only one thing works for me and it’s reading.

I’ve been a bookworm since my first book at 5 years old, I’ve always had bookshelves full of books and I don’t go anywhere without a book, whether a paperback or kindle.  Books take me away from my life and give me adventure and excitement, they allow me to live so many lives and learn so many things.  I have an Alice in Wonderland tattoo dedicated to the book because it’s one of my favourites, I’ve always loved the idea of finding another world or reality and getting lost in it, I could just never understand why the characters wanted to go home again at the end.  I also have a Jane Eyre quote down my spine which reads “I am no bird and no net will ensnare me” which is one of my favourite book quotes.  Reading for me is about being free and letting go of everyday stresses for a while.

I soon realised that when my mood dropped, if I picked up a book and read it through, by the end I felt a little better and a little more hopeful.  The thing with me and reading though, is that I have to read a book in one go, there is no putting it down and picking it up the next day.  I start and finish a book in a matter of hours because I live the story and I don’t want to pause halfway, I want to live the whole thing all at once.  So I would read late into the night when my insomnia was bad and it actually helped me sleep better because I dreamt of the things I read and it was a refreshing experience for me, because I’d usually dream of disturbing things and have nightmares.

The Doctor was glad that I had found something that distracted me when I needed it but she was also a bit worried because my imagination is overactive and early on in my depression and at some points still, I can become confused between reality and imagination.  She advised me to carry on reading but to not get lost in books and try to forget my problems because it was only a short term release.  I have a habit of avoiding my problems and bottling things up until I explode and then my mood becomes unstable, with books she was afraid I was just avoiding my feelings.

I think she was right to some extent, I do avoid real problems with books.  If I’m stressed or something bad has happened that day, I’ll pick up a book and ignore the world for a while, I’ll forget to eat and drink but I’m happy and free for a few moments.  This is why books are my medication, maybe it is bad for me to get lost in imaginary worlds and ignore the real one but it makes me happy for a while and I’ll take that.  Books bring me hope and joy, they let me relax and unwind and become invested in something.  I would never give up books, reading is my life and it’s what gets me through my hardest times.

To end, enjoy some quotes from those who also believe imagination is one of the most important parts of life:

Here in your mind you have complete privacy. Here there’s no difference between what is and what could be. CHUCK PALAHNIUK, Choke

We do not need magic to change the world. We carry all the power we need inside ourselves already: we have the power to imagine better. J. K. ROWLING, speech to Harvard Alumni Association, 2008

The man who has no imagination has no wings. MUHAMMAD ALI, Newsweek, 1975

Logic will get you from A to Z; imagination will get you everywhere. Albert Einstein

Imagination is the eye of the soul. Joseph Joubert

 

 

Nocturnal Anxiety

Nocturnal Anxiety

When the sun sets, most people are settling down for the night.  Winding down after a hard day and looking forward to their bed.  My brain works in the opposite way, as soon as it gets dark my anxiety wakes up and decides to wreak havoc.  It’s like everything I’ve ever worried about is suddenly the most important thing in the world, my brain starts going over scenarios in my head and it’s like listening to a hundred radios all at once.  My Fiancé dreads night time because I become so on edge and so stressed.  I’ll be worrying about something in my head and he’ll just look at me and say “You’re doing it again”.

It doesn’t help when my depression then decides to put it’s opinions into the frame as well, it’s like spending time with two people I really don’t like but I have to put up with and there is no way to shut it up or turn it off.

I go to bed and lie in the darkness thinking about such bizarre things like how many ways I could potentially die that night, all those embarrassing moments and how I could have acted differently and saved myself the humiliation, how am I going to afford to keep living if I can’t work, does my Doctor secretly hate me, could the oven potentially light itself and set fire to the flat.  Sometimes I wake up suddenly in the night because I remember I haven’t done my homework…..then realise I am 23 and left school six years ago!

I can laugh about it when I wake up but in the dark while everyone else is sleeping peacefully, it’s not funny and it’s painful because I don’t want to fall asleep worrying about every issue I could possibly have, I don’t want to feel on edge and scared.  But no matter how much I try and tell my brain that it needs to stop and rest, it doesn’t.

Anxiety is awful, it brings out the worst, makes you see things that are abnormal, it makes you believe things that aren’t true and there is no way to rationalise, all you can do is suffer through it and hope that eventually your body will become so exhausted it forces your mind to shut up.