Open Letter

Below the break is a general open letter.  it’s not specifically to any one person.

After this length of time knowing each other, i would have thought you know exactly how my illnesses affect me and what i can and cannot do.  i’d expect you to understand that they’re not just gonna go away no matter what i do.

feeling fed up.
feeling fed up.

eating more fruit and veg will do nothing.  doing more excersize will not give me more energy.  geting up earlier in the day will not help me sleep at night.  i will not miraculously stop being tired.  i will still need power naps in the afternoon.  i still need to rest up and be comfy.

If i do too much not only am i physically and mentally exhausted, i am literally in absolute agony leaving me unable to walk.  there are days where i have to crawl out my bed to get to the bathroom and then crawl back.  there is a reason i spend 80% of my time in my bed or on my bed or generally in my room.  it’s where i’m comfy.

i’m not being lazy, i’m trying to stop my pain.  medications do not always work and when they do they can leave me fatigued (mentally and physically) because i am constantly trying to stay positive when adversity stands in my way.

i need support and understanding. i do not need to be told that i WILL be better off for doing this, that and the other.  put simply, i don’t know.  yes i’m gonna start doing yoga at home, but i have been warned it may not work for me.  Fibromyalgia and Chronic Fatigue Syndrome affect their sufferers in different ways.  just because something works for Person X doesn’t mean it will work for Person Y or Person Z.

with FMS and CFS you CANNOT generalize.  you cannot assume and you cannot say “such and such WILL WORK FOR YOU” because you simply don’t fucking know and it is a personal pet peeve when i am told “if you do this…. then you’ll feel ten times better and your symptoms will go away and….etc” because, simply put, how fucking dare you try and tell me what will work for MY body.  it’s MY body and i will give anything a go (as long as it’s not stupid expensive, because i’m on a budget), however there are limits to what will or won’t work for me.

I was only diagnosed in 2010 but i’ve had this illness since i was 13 years old.  that’s 15 years of pain and fatigue.  15 years of trying my best just to get on with it and finally i have to sit back and accept my own boundaries.

Yes, there are times i will push those boundaries (going to gigs, doing photoshoots) however i pay for pushing and bending boundaries.  i try so fucking hard not to show my pain, not to complain and this goes against me because people automatically assume i’m fine.  that i’m doing something right when in fact all i’m doing is hiding it behind a facade. I wear a mask of sorts, and behind it i am screaming in agony.  i wear a smile and i laugh though because i don’t want to complain.

When i DO pass comments or complain about my pain/fatigue/bad memory/dizzyness all i get is advice as to how to make myself better.  how to improve my body.  how to fight off the Fibromyalgia.  like everyone automatically knows wtf i’m going through and they become doctors and nutritionists and psychologists and physiotherapists.

i think i know my body better than anyone else.  even my doctor, my specialist have told me that i will learn over time how to deal with my symptoms, i will learn what i can and cannot do and i will eventually find my balance.  however this can take time and in the mean time i do not need to be told what will and wont work and that i need to make changes so that I can change or i will get worse.

it’s not that the symptoms get’s worse, it’s that i get so mentally fatigued.  so pulled down and worn away that they affect me in different ways.  it’s ridiculously hard to do variously excersizes when my fibromyalgia affects my back, my hips, my knees, my ankles, hands, neck, head.  I get chronic headaches and migraines.  i have possible NEAD (i see the doctor on Wednesday).  I have a lot on my plate and it makes my symptoms worse when i’m stressed.

in short…. i need understanding and support.  i need a shoulder to cry on occasionally.  a gentle hug and to be told “don’t worry, you’ll be okay in time” and maybe even a cookie too.

Please stop acting like you know exactly how all this works and affects me.  it makes me angry and upset.  it makes me wonder if you actually listen to me when i do tell you what the hell is going on.  am i boring you? do you switch off when i talk about my problems?  THAT is why i don’t say anything on a general basis.  because people switch off and don’t really want to know.  they regret asking how i am and what i have been up to.  almost as soon as they have asked the question and realize i will give an honest answer.

so i stopped.

i’m fine.  just fine.


TL;DR?  stop being a dick.  stop assuming (ha, ass) and stop telling me you know what’s best for me when you obviously don’t know me at all.

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