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.

New Year…Same Me.

New Year…Same Me.

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

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

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

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

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

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

Week in bed.

Week in bed.

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

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

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

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

How do you notice Depression.

How do you notice Depression.

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

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

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

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

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

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.

Guilt and Shame

Guilt and Shame

Having an invisible illness brings a lot of judgement and opinions from others and a lot of time it’s negative and hurtful.  Living with Depression and Chronic Fatigue is hard enough as it is without other people making me feel worse about something I cannot change.

Before my Fiancé met me, he had never met someone affected by depression and anxiety and I think it shocked him to see how much it affected me.  He didn’t understand Depression and it took a while for him to get used to the condition but he made the effort to learn about it and support me as much as possible.  The anxiety was hard for him to deal with because he is such an outgoing person who loves to socialise and it caused a lot of stress in the relationship but we both eventually learned how to compromise and he learned my boundaries and respected them. The Chronic Fatigue Syndrome took a long time to diagnose and frustrated him to no end because he could see how my life was so negatively being impacted and it seemed like doctors just fobbed me off,  but he supported me through all of it, and he’s still supporting me even though he doesn’t understand how something you cant see can be so life changing.

Some people though aren’t as supportive and understanding, they have the impression that Depression is something I choose to live with and the Chronic Fatigue is just tiredness which I should get over.  I don’t currently work, I have done in the past and I would love to again, there is nothing more fulfilling than earning money for your future.  To others though, I choose not to work and am lazy, they see me sitting at home all day earning no money for my household and putting all the pressure on my Fiancé.  It makes me feel ashamed and I start to doubt even myself, am I weak? am I lazy? Could I do more?

Chronic Fatigue Syndrome is hard to explain and when people just accuse me of being tired and lazy it hurts me so much because I’m 23 and if I could I would be out there in the world preparing for my future and socialising, doing all the things a young person would do.  Chronic Fatigue Syndrome isn’t just feeling tired, its feeling mentally and physically exhausted.  People take for granted waking up in the morning and feeling refreshed and ready for the day.  When I wake up in the morning, I feel nothing but exhaustion, I’ve slept all night but it’s not helped me, it’s not refreshed me, I feel just as tired as I did when I went to bed.  Then there is the constant aches in my muscles, it feels like I’ve run a marathon when all I’ve done is had a shower.  My joints are stiff and my temperature all over the place, I’m sweating one minute and the next I’m freezing cold.  I can’t concentrate for long, my mind feels foggy and I forget things so easily. When I sleep I have such vivid disturbing dreams that it’s surprising I sleep so much. I get up at 11am and by 3pm I need to sleep again, but I fight it because I feel so ashamed, I shouldn’t be tired because I haven’t done anything productive.

So it hurts when people think I am exaggerating or making my condition up, it hurts when people say I should be out working like everybody else because its just laziness.  It hurts when I have to fight for my benefits because Chronic Fatigue and Depression are not classed as long term illnesses.  I shouldn’t have to prove myself.  I have two illnesses that can’t be spotted physically but it doesn’t mean I’m not really ill, it just means I have to try harder to fight.