TW: Fibromyalgia

I love that quote from Neil Gaiman. I understand that there are people out there with issues related to PTSD that have suffered abuse and trauma who ask us to accommodate them. I have no problem with this. I do have a problem with those who want or demand everything to be labeled. I seen something online recently that said “TW: FOOD”. Seriously? In a lot of ways I feel that, as a society, we have taken this too far.

I host a Sims machinima festival. You know, the video game, The Sims? There was one season I couldn’t watch someones entry because it triggered me and gave me an anxiety attack. I turned it off less than three minutes in and emailed the person that made it, that I just couldn’t watch it. Just when I think that I have a good solid grip on things, there is always something lurking in the shadows. That’s what things do. They lay in wait in the shadows where they can’t be seen and then pounce when you least expect it. Sometimes that thing waits years, for the right moment and you never know what hit you. It is moments like this that I am reminded that my anxiety is pretty well controlled. It hasn’t always been that way, but that is another story for another time.

Trigger warnings have a time and a place, and personally, I feel that they are overused on the internet. Life doesn’t come with a trigger warning and neither do chronic illnesses or emotions or people. I say all this because I am going to be talking about things here that will be sensitive to some, maybe many. So, as my favourite writer, Neil Gaiman would say, consider yourself warned.

I have had a very bad week or so. My husband and I had a “disagreement” (and by disagreement, I mean I lost my shit) because of my dog, and how he treats and views my dog. He treats my dog (who, in reality is a 5 and a half old puppy) as if he is a pet that he can do things like feed candy to and rough house with him in such a way that it encourages biting behaviour. My husband has been know to go into what amounts to his man cave and shuts the door, with my dog in there. He encourages my dog to spend time with him. He can’t seem to wrap his brain around that I am doing everything I can to ensure that this adorable monster puppy with an attitude makes it as a service dog. I don’t want any other dog. I want THIS dog. I knew he was meant to be my dog the second I seen his picture online.

Enter a weather induced fibro flare that caused a lot of pain. Just not fibro pain but arthritis pain and aggravated the bursitis in my hip. It was at the point it was too painful to get out of bed, and that is where I spent the bulk of my time, getting up only to use the bathroom, eat, or go get my dog. I told my husband a couple days prior to this flare up that I needed my pain meds picked up. We never went to the pharmacy while out running errands because he was tired and didn’t want to spend any more time out. Two days into this flare up and out of pain medications I was done. I wanted my dog for DPT (deep pressure therapy) and nothing I did would make him stay in the room with me. Not even bribing him with treats. I spent over 20 minutes yelling at my husband how he was being selfish and self-centered. How he acted like he didn’t give a rats ass about me and the amount of pain I was in, how he always made things about him as if it were a competition on who was in more pain or who felt worse, and how he was screwing up the training of my dog that. I reminded him how he didn’t want me to get the dog in the first place and now he was encouraging the dog to stay with him when he was home and how he was ignoring what I was telling him about training and how he was ignoring the trainer about how to train. How this was supposed to be my dog because I needed help and couldn’t count on anyone in the house to help me when I needed it.

It was at this moment that I felt the lowest in my life. I felt worthless. I felt disrespected. I felt unloved. I felt alone. I remember thinking that I had 60 days worth of muscle relaxants and a bottle of tequila. Would it work, or would my body betray me like it always does and make me throw it up?

Fun Fact: Fibromyalgia patents have a much higher rate of suicidal thoughts and tendencies than the normal population¹ and based on a Dutch study, have at least a 10% higher suicide rate than that of the general population².

I still can’t believe it took me being in so much pain -and I handle pain amazingly well to the point it worries my doctor- that I couldn’t deal with things for him to go out and get my pain medication. He went and got it because, basically, he didn’t want me “irrationally screaming” at him again. When I told my best friend what happened, the response was, “What did he expect to happen? You haven’t had pain meds in three days.”

After I calmed down I went through my husbands medications and found out he’d been lying to me about taking them. Some of his meds he hasn’t taken in more than a year. Another he claims that the doctor took him off of, despite the fact that it would have been totally irresponsible of the doctor to do so and not give him something to replace it with. Rather than yelling at him about this for probably the 56th time over the last 10+ years, I fired off a rather lengthy email to our doctor about this and gave him the last dates that meds were filled (nice thing about being able to look up insurance claims on line) and what he has and hasn’t been taking and how, not taking these meds for his various medical conditions it makes him act like he seriously needs a psych eval. Anyone that tries to tell you that a messed up thyroid and low hormone levels don’t effect a person, they are either lying or don’t know what they are talking about.

A couple days later someone who is supposed to be helping with that Sims machinima festival I mentioned previously, and who I had not heard from in well over a month, messaged me out of nowhere going off about how she didn’t like how some things were being handled poorly, according to her, and said that I was too disabled to run this festival and that I needed to turn it over to someone else. She then expressed concern that I was taking all this as an attack.

Thanks for the vote of confidence and support there. Nice to know that even in a gaming community, where you do this thing as a hobby and bring other people together with the same hobby, that you are still going to be discriminated against because of a chronic health issue. And this came from someone who claims she is “very accepting of everyone”. And yet, here we are.

Today I am being treated for bronchitis. I am on antibiotics and steroids. As I said, not a good week or so.

In a very long, round about way, that brings to me to what the point of this post was supposed to be about. Someone in an online fibromyalgia community asked if anyone else had ever felt suicidal. The person wasn’t going to act on it, but she wanted reassurance that she wasn’t the only one that felt like that.

One of the many people who responded posted this:

This upset me more than I though it would. One doesn’t choose to be depressed. It’s not always possible to think of happy things. Sometimes you are just so focused on the pain because it is so bad. It is so bad you can’t sleep or eat and no matter how you sit or lay you can’t get comfortable and it causes anxiety. Fibromylagia takes all the joy from your life because you are in so much pain you have to use a wheelchair and you turn down invitations to do things because you are too tired.

There is no joy in being in chronic pain. There is no joy in dealing with debilitating exhaustion. There is no joy in migraines. There is no joy in throwing up after you eat because you are in too much pain. The only way that I am going to find joy in fibromyalgia is if someone gives me some magic mushrooms. I hear they are also good for migraines. Find joy in everything. How about you bite me. I find a lot of joy (or happiness or things to laugh at) in life, but I don’t find it in fibro and I doubt anyone else does. This is not a struggle with a happy ending.

Changing your mindset doesn’t change things. Depression is a very real thing and it’s not always easy to fix. One can not just get their mind off being sad…and really “feeling sad” and being depressed is the difference between a drainage ditch and The Grand Canyon.

For some people the answer to everything is not religion and God and this isn’t the time nor place to push religious beliefs on someone. I really feel like this response belittles the original posters feelings (and others who feel the same) and it makes me angry. It is also worrying that there are those that have this disease that don’t understand it. If those who suffer don’t understand, how can we support each other? How can we make family and friends and doctors understand? How can we make the general public understand?


¹https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998848/

²https://www.reuters.com/article/us-fibromyalgia-suicide/fibromyalgia-comes-with-a-suicide-risk-study-idUSTRE66F3JJ20100716

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