Hi, i'm Becky.
I've joing this forum for some reassurance. In my every day life, I am constantly subjected to people's judgemental opinions. Sometimes it gets to the point where I begin to doubt myself. I begin to believe I am just lazy, that it's my diet or that I watch too much TV. And it takes a lot of self esteem for me to look in that mirror, at my tired eyes, feel the aches in my joints and the swimming in my head, and assume myself that no matter what people say, there IS something the matter with me.
The symptoms started when I was 14, immediately after a viral infection while I was on holiday in the south of france.
Two things I noticed first. 1. I had completely lost my appetite - I would be starving hungry, eat about a 1/3 of my dinner and then feel sick and full up. 2. I felt dumber - I had previously been an incredibly academic kid. I was the top of the class. All A's, teacher's pet. But I started to loose concentration, I couldn't remember what the teacher had just said, and I became very apathetic once they started to view me as a naughty kid. My grades slipped, and as I lost the ability to be a good student, I started hanging around with the 'wrong crowd'. They all smoked dope. They made me incredibly happy... finally a group of people who didn't look at me funny for just wanting to sit and watch a movie, struggle to get up and pee, have droopy eyes etc etc.
They tested me for EVERYTHING. I had countless blood tests, ultra sounds, a cat scan, urine samples, hearing tests, eye tests (even the really extensive ones where they look at the back of your eye). I finally saw a specialist, who diagnosed me - as she was aware of their now being a hereditary connection theory circulating, and my mother has had ME my whole life.
My mother refused to accept it. She still does to this day. It hurts, and always will, but that's her way of dealing with it i guess. It infuriates me that when I mention it, she rolls her eyes.
But the symptoms continued. I was sleeping at every possible opportunity. I spent any time off school in bed watching television. When they forced me to do hockey in the rain once, I was off school for 2 weeks. I was so run down. What I had previously called 'growing pains' i soon learned were part of the CFS. I can only describe my pains as a feeling similar to cramp but it feels like it's coming from my bones. My knees mostly, my ankles and my hips.
It wasn't until I got to university (I lost all the possibilities of the best universities a long time before), and was no longer assosiated with 'stoners', that I realised how impossible it was going to be for anyone to understand.
I was living with normal, healthy girls, who did fitness videos together in the mornings, walked 20 mins to the campus every day and could drink well into the early hours and wake up without a hangover. At first, I tried my hardest to join in. I drank ALOT... but I would suffer like crazy the following day. I tryed going to the gym with them a couple of times... but it'd knock me for six for days afterwards.
And all they saw, was a girl who napped for 4 hours in the middle of the day, who was not as skinny as them, and was therefore lazy and a pig.
I tried to explain it to people... but I have not yet met a single person who doesn't have ME or CFS who understands. Even people who have other illnesses... in fact they are the worse, because they believe that theirs is a REAL illness, so they shouldn't have to listen to you.
Some people roll their eyes. Some people nod and pretend like they get it and they are interested... and yet the next time they ask what's wrong and you say 'oh i'm just tired' their response is 'your ALWAYS tired, what's the matter with you'... to which I respond 'I told you... CFS... remember'... usually followed by 'oh yeah, that thing...'
I thought I was getting better recently. I had previously been working in a quite bar in a small town. 4 hour shifts from 12-4, was ideal. But I really really really wanted a career. I had studied Journalism (as I thought perhaps I could get established as a freelance writer and work from home), and was offered a job at the local newspaper dealing with advertising. Switching drastically from such easy hours to a 9-5 was difficult, but after a while it felt good. And I felt that I must be getting better, or I wouldn't be able to handle it.
But it didn't last long. I quickly found going to work so difficult that I had to hold back tears as I walked through the door. By this point, I had so much debt, was supporting myself on minimum wage, that I felt I HAD to go in... and this became depression.
I was self harming, I would have breakdowns of unreal proportion of the smallest thing. I had a lot of time off work, and in that tight office community they all started to hate me. They all viewed me as pathetic (still do). When I returned to work, they treated me like scum. Wouldn't talk to me other than to ask 'have YOU met your target this week' in a suggestive tone.
Of course, I am trying to find another job... but it is SO difficult to find a job that is easy in terms of the work (which this one really is) and pays enough (as in has enough hours to cover my rent and food).
I am Ill right now with a flu bug. I guess that's what's spark this mega long rant. I know that when I go in, whether it be tomorrow or the next day, and I am struggling to get up and down the stairs or even to keep myself from speaking monotone on the phone, all I will be met with is cold stares and eye rolls.
Thanks to anyone who took the time to read this, and even more to anyone who responds.
I don't expect anyone too (it's a mammoth rant, and let's face it, none of us on this part of the forum are going to be particularly good at concentrating on that
) But it feels great to vent a lot of things that i've been pushing down for a while now, and have no one to talk to about it.
Here's 5 lines that sum up how I feel about my illness: I'm sick and tired of always being sick and tired
If you don't want to hear how I am, don't ask
Telling me to 'Cheer Up' is not helping
It's like living half a life, because your only half awake
Depression is not the cause, it's a symptom