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.

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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.

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.