7 Things I Want to Explain to My Friends and Family About Chronic Pain

First and foremost, please let me tell you I love you. I appreciate you more than I can possibly explain. You are the reason I can still feel “normal” at times. But there are things you don’t understand. I know you try your best, but please let me explain:

My pain is different from yours.

I know you understand what it’s like to have a pain that makes you double over or that niggles away at you for a few days. But imagine those pains in different places in your body constantly combined with fire ants crawling over your skin and twinges that randomly decide to attack when you least expect it. Sound physically attacks me, and lights physically hurt my brain. I would give anything to take away your pain because I know what pain is and that we feel it differently. So please do not try and compare our pain levels.

I may have only been awake for six hours, but yes I’m exhausted.

I used to tease my girlfriend for taking naps, but now I get it. I really do get it. I’d rather nap and manage a few more hours later in the day than not get to watch my favorite show live or join in that Facebook livestream as it happens.

I thought I could do it when I said I would, but I can’t now.

When you asked me an hour ago if I could fold the laundry, I thought I’d have the spoons in an hour to help you do it. Since then, my thighs have decided to flare, my senses have been attacked by that car alarm and my sinuses have caused an attack of vertigo. Pretty much all I can manage right now is another episode of this show.

I love hugs but some days I can’t stand to be touched.

I greet you with a hug often. But there are days where even rubbing my own eyes hurts my hands and my clothes hurt my skin, never mind how soft they are. That is the nature of having fibromyalgia, Asperger’s syndrome and sensory processing disorder. And yes, that hurts me more than it hurts you because the days I can’t be touched are often the days I crave it the most. If I trust you enough to hug me you are special to me, so please don’t think that me saying no once has changed that. I’m having a bad pain day. That is all.

Fibro fog means I’m forgetful and have the worst case of butterfingers.

I was scatty before, now I’m just forgetful. I forget appointments, I forget times. Everything has to have an alarm. Everything needs a reminder. I forget words. I forget names. I need lists to go shopping. Coffee became “not tea” for an entire evening because I couldn’t remember the word.

I’m having to use a plastic plate for meals because I can’t handle the weight of a heavier dinner plate.  I drop things a lot. I laugh about it but it embarrasses me. And I want to cry when it happens.

Sleep is something that comes in odd chunks of time.

When I’m awake I want nothing more than sleep most of the time. When I go to bed, even with the help of pain relief and other medication, getting comfortable enough to sleep is difficult. And so long after my sister has fallen asleep, I’m lying awake listening to audiobooks on my phone and my mind is running a hundred miles a minute. If I’m fortunate enough that my hands allow me, I’m playing games on my phone too or writing journal diaries in notes. When I do fall asleep, it’s hard to either stay that way or wake up again. This cycle repeats daily.

I am still learning, so I will get frustrated.

There are many many many times I do not tell you exactly how I’m feeling. You are my friends and my family, you know (often to your own frustration) that this is the case. But some of you have seen me getting frustrated as I learn what this new diagnosis means for me and how this new set of symptoms is changing my life. I will be grouchy at times. I will be short tempered. That is natural. So please know if I snap at you that I don’t mean to do so. I’m trying not to.

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