I had a tablet- a nexus 7- and this tablet lasted me a good long time. Until one day it didn’t. It started losing its charge way too fast. Then it started just not charging. That is my daily existence. My ‘normal’ is what the average person’s ‘sick’ is, and sometimes it’s hard to get people to understand that. It’s muscle aches like you have the flu, but it never ends. It’s sleeping 9, 10, 11 hours and waking just as exhausted. Or else not being able to sleep at all. It’s accidentally draining your battery critically low and triggering an internal shutdown that puts you into an unrestful sleep that invariably leads to excruciating pain. It’s joints that ache like liquid fire, a sensitivity to sound that triggers a rage when it gets really bad, a sensitivity to touch that means I can no longer wear closed shoes, or gloves. It’s slowly having your intelligence stripped as the pain fogs the mind and dampens memory recall. It’s wanting to cry several times a day from the unrelenting pain and exhaustion.

My doctors ruled everything else out and their conclusion is that I suffer from chronic fatigue/ fibromyalgia. There are literally a hundred + symptoms of CFFM, and there’s no telling day to day which symptoms may manifest. I must weigh every single action by how much energy it will potentially drain and the same action may not drain as much energy one day as it does the next. If I want to go anywhere, I have to balance how much energy it might take to get there, how much to get back, how much I might need to use while there. I am legally blind, so I no longer drive. That means I have to plan buses, or pay a taxi. One requires more energy that I can usually spare, and the other, more money than I can spare. As a consequence, I rarely do anything anymore. Hell, even doing everyday house cleaning is exhausting and I’m the one in my home that actually tried to get them done. It’s an increasingly losing battle that makes me curl up and cry several times a week. More than once I’ve seriously considered whether existing is really worth it. A part of me wishes this were terminal as well as chronic. At least then I’d know it’s going to end soon. That would at least make it somewhat easier to endure every day.

Chronic muscle pain & muscle spasms

Chronic severe fatigue and decreased energy

Insomnia or waking up feeling just as tired as when you went to sleep

Stiffness upon waking or after staying in one position for too long

Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)

Nausea with no reportable gastrointestinal issue

Chronic facial tension or migraine headaches

Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold

Severe anxiety and depression

Numbness or tingling in the face, arms, hands, legs, or feet

A feeling of swelling (without actual swelling) in the hands and feet

Myopathic pruritus

Allodynia, a heightened sensitivity to touch, which results in pain from things that normally would not cause discomfort, like wearing clothes.

This is just a handful of the symptoms. Sure, there are things that can mitigate the energy loss. I have dietary guidelines that reduce internal inflammation. I must walk at least 15 minutes every day, but be careful not to walk too much. Walking used to be a favourite activity. No longer. Often it feels like I’m dragging boulders behind me. Sometimes just doing my damn job is monumentally difficult, especially if I have to deal with drunk assholes. Anything at all that dumps adrenaline or cortisol into my system ramps up the pain. I need to take short naps often, even at work, just to hopefully recharge my battery a tiny bit. I am beginning to not enjoy doing my blogging or reviewing. More and more I don’t even want to read. I don’t want to exist.

And it sucks trying to explain to others what’s wrong. Doctors don’t even really know what CFFM is. It’s only recently that the majority of doctors see it as ‘real’, as something the patient isn’t making up, rather than something purely psychological. I still get that from people. They look at me like I’m faking, that I’m lying or just lazy. Fuck those people. I kinda do wish they’d get CFFM too. And be looked at the same. Called lazy and a liar. Know what it feels like.

Fibromyalgia pain comes more from the brain and spinal cord than from areas of the body in which someone may experience peripheral pain. The condition is believed to be associated with disturbances in how the brain processes pain and other sensory information. — Dr Daniel Clauw, American Pain Society americanpainsociety.org

So, it actually is something serious. It’s a central nervous system/ brain disorder. Yet, outwardly, the patient looks fine. Looks can be deceiving. That Nexus I mentioned at the start? It looks fine too. But the battery remains critically low.