Things about my condition that annoy me...

I had to cancel holiday plans because I was too tired.

Things about my condition that annoy me...

Taking 3 days to wrap 12 gifts because you have to 'pace' yourself.

Things about my condition that annoy me...

My partner and I have a dog. His name is Puck. Puck is a very active dog. Because of my condition, I miss out on everyday pet/owner experiences. I can't walk my dog. I can't run with him. On bad days, even playing with him is hard. Almost all of his care falls to my partner.

Things about my condition that annoy me...

I'm an outgoing, independent, extroverted woman... Who is held back, made dependent, and limited socially by my condition...

Things about my condition that annoy me...

Some days nothing helps. No amount of OTC pain relievers, sleep, rest, good diet, exercise, or anything else will relieve my symptoms... I just have to wait... And I am not a patient person.

Living Conditionally and Parenting

Today my son and I ended up talking about my mental and physical health issues. He's 17. He said "wow, I'm really glad *I* don't have to deal with any of that".

For a moment, I hesitated.

Not all mental health issues start at puberty. Not all mental health issues manifest in teen years. Although more rare, there are a few that may not start until mid twenties.

Then, I told him a hard truth. I told him he's not out of the woods yet. From my genetics he has a higher chance of depression, anxiety, and maybe a personality disorder (terrible label, but it is what it is). He has shown absolutely no signs of this. He's an amazingly happy, well adjusted kid.

But that's only half the story.

His father's genetics carry a small chance of schizophrenia and the schizo-related personality disorders (terrible label). Those are the more likely to manifest later, in young adulthood. (This isn't a rule, it's a tendency).

Why did I tell him? Simple answer, he needs to know. If, some time in the future, he starts having symptoms, he'll have the information he needs to have the best chances of catching it early and getting help if needed.

Because suffering for years, not knowing that what you're experiencing isn't normal, is a horrible thing.

Things about my condition that annoy me...

I had to sit all day because too ouchy and tired to stand or do much... As a result, my hips and knees hurt MORE because I sat all day.

Things about my condition that annoy me...

Random bad feelings. No cause, no trigger, just suddenly and inexplicably feeling unwell. Defining "unwell" is difficult. Today it was my head feeling wrong, like when you take cold medicine and your head feels bad from the medicine. Only I didn't take any cold medicine. On and off all day. Seriously limits functioning.

Things about my condition that annoy me...

Getting out of bed, slowly because it hurts, then going back to bed an hour later because you're too exhausted to stay upright.

Things about my condition that annoy me...

Winter magnifies symptoms, so I become a hibernating zombie for several months.

Things about my condition that annoy me...

Partner wants to cuddle, but I'm in too much pain to be touched.

Things about my condition that annoy me...

Medication side effects are horrible. You know it's really bad when you need another medication to deal with the side effects from your medications.

Things about my condition that annoy me...

Needing help getting dressed.

Things about my condition that annoy me...

Pain makes me snappy... Sorry to you I have yelled at.

Things about my condition that annoy me...

Needing therapy to learn to accept my condition.

Things about my condition that annoy me...

I wake up tired... Every freaking day.

Things about my condition that annoy me...

Having a great time at a friend's house doing  Pre-Thanksgiving Thanksgiving dinner and suddenly get hit by a flare. I went from fine to I have to go home in less than 20 minutes.

Things about my condition that annoy me...

I get a chill and can't shake it for hours, even with a heating pad, hot water bottle, pile of blankets and a cat on my lap.

Things about my condition that annoy me...

The simplest, hurting when there is no cause.

Things about my condition that annoy me...

Wanting to take a bath, but not doing it because the person who makes sure you can get back out of the bathtub safely isn't home.

My Fibromyalgia definitions

Fibromyalgia: taking several different OTC pain relievers together so you can get out if bed. (don't worry, my doctor suggested it).

My Fibromyalgia definitions

Fibromyalgia: Having people think you are high because you have brain fog and didn't get enough sleep.

My Fibromyalgia definitions

Fibromyalgia: Watching your child(ren) for signs of chronic illness, praying they won't suffer like you do.

My Fibromyalgia definitions

Having to explain that Fibromyalgia is "real" to everyone you know and hoping they believe you.

My Fibromyalgia definitions

Fibromyalgia: Explaining to your hair dresser you really do want your hair cut "that short" and being called "brave" when you really keep it so short because anything longer takes to much work.

My Fibromyalgia definitions

Fibromyalgia: not wearing make-up. Because it's too much energy to put on and take off every day.

My Fibromyalgia definitions

Fibromyalgia: not being able to walk the dog, because you can't walk.

My Fibromyalgia definitions

Fibromyalgia: taking an hour (or more) to shower and get dressed. Thats it, just a basic shower and getting clothing on. No leg shaving, no make up, no hair styling.

My Fibromyalgia definitions

Fibromyalgia: Some days you feel fine.

My Fibromyalgia definitions

Fibromyalgia: Explaining to your doctor you really do mean you have level 7 pain on that scale of smilies. But that is only a 5 on your personal pain scale (because your scale doesn't have 'no pain').

Good days are 3.

My Fibromyalgia definitions

Fibromyalgia: In bed, praying for sleep so you can have a break from the pain.

My Fibromyalgia definitions

Fibromyalgia: With brain fog, not being able to remember what you did yesterday, today, or 5 minutes ago.

My Fibromyalgia definitions

Fibromyalgia: Resting for 3 days before a planned event in hopes of being able to attend it.

My Fibromyalgia definitions

Early in the day: I can do this, I'll be fine.

Later in the day: No, no, I'm not fine.

In bed trying not to cry from pain: What was I thinking?

My Fibromyalgia definitions

Fibromyalgia: Sitting on the edge of the couch, working up the nerve to stand up.

My Fibromyalgia definitions

Fibromyalgia: Pushing yourself one day then having to stay in bed for 3 days.

My Fibromyalgia definitions

Fibromyalgia: "I'm going to clean this room"... 2 hours later too sick and weak to stand, collapses in bed. Room not clean.

My Fibromyalgia definitions

Fibromyalgia: Asking a question several times in an hour because you forgot you asked already.

My Fibromyalgia definitions

Fibromyalgia: always waking up tired.

My Fibromyalgia definitions

Fibromyalgia: Feeling cranky, often.

My Fibromyalgia definitions

Fibromyalgia: When your child says "Let's face it, you don't feel well 90% of the time. I know why we haven't done stuff." after you've just apologized for not doing more with them.

My Fibromyalgia definitions

Fibromyalgia:
Doctor says get more exercise.
You exercise.
Exercise triggers a flare.
Can't exercise during a flare.
Wait for flare to pass.
Repeat.

My Fibromyalgia definitions

Fibromyalgia: Forgetting to do that thing again. The thing you've been meaning to do, but can't remember what it is.

My Fibromyalgia definitions

Fibromyalgia: Walking close to walls. So when you get dizzy or are too weak to walk you have something to lean against.

My Fibromyalgia definitions

Putting off going to the bathroom way too long because getting from where you are to the bathroom and back will make you feel like you just ran 5k.

My Fibromyalgia definitions

Fibromyalgia: Cancelling plans (again) because you are too fatigued to feel safe driving.

I have the Januaries

January sucks.

Winter is the worst time of year for me. January is the worst winter month. But it starts in November and continues until at least March. Winter takes away the last bit of functioning I have while I just fight to get out of bed each day.

The cold weather and short, dark days are Hell on my conditions. Depression, pain, fatigue, and lethargy all get considerably worse.

Getting around it harder too. In the summer, on good days, I can get around in my wheelchair pretty well, even with no one to push me. In the winter, the snow, ice, and slush make using the wheelchair very difficult, even with someone pushing me.

And the cold...
The cold is enough to keep me inside for weeks at a time.

I combat the Januaries the best I can. I keep my mind and hands busy with hobbies and crafts and get extra sleep when I can. But mostly, I just wait... I wait for Spring, for when I can start to feel a little better again.

How do you combat the Januaries? Leave you answers in the comments below.