I have an illness. Most of the time, this illness doesn’t have me. I have been, mostly, in remission for over 2 years.
That remission ended last month, and I have been slowly getting worse. It’s not unbearable, unmanageable or unlivable. It’s mostly inconvenient, exhausting and frustrating.
I’ve had this illness most of my life, finally receiving official diagnoses six and a half years ago. The primary issue I have is Fibromyalgia. It is paired with an unspecified auto-immune disorder that does not always flare at the same time. Currently, I believe, only the Fibro is flaring.
I know I’ve spoken very little about my illness in the past couple of years, other than to acknowledge it in passing and to write a couple posts about it. Now that it is affecting my life again, I thought it would be a good time to explain more about it and, specifically, how it effects me.
Fibromyalgia is a syndrome marked by chronic, wide spread pain & exhaustion. To receive this diagnosis you must have tenderness in 11 of the 18 tender points (pictured above) when 9 lbs of pressure is applied (enough pressure to ring a doorbell) to the point. I am generally, even when not flaring, tender in 16-18 of them.
It is suspected that Fibromyalgia is an illness of the nervous system, where the nerves of the body overreact to stimuli. My experience suggests this, as does the experience of many others I know who suffer from Fibro in similar and lesser degrees.
Fibromyalgia, like most illnesses, affects individuals to different degrees – depending on their health, stress levels and other factors. Many people with Fibromyalgia live good, fully functional lives with or without medication and are able to work full-time. Some, like me, go through periods where they are fully disabled. I was for nearly three years.
The pain causes lots of other fun symptoms:
- exhaustion – the body uses lots of resources to process pain.
- crankiness – pain leads almost everyone to be short-tempered at times (but not all the time. Awareness is key to prevent this.)
- “Fibro Fog” – slowness of thought, forgetfulness and (shit… I forgot what I wanted to add here. How’s that for irony.) Needless to say, it can lead to milk in the cupboard & keys in the fridge.
The pain is also inconsistent. Some days it is all over, sometimes just the shoulders, legs or back. Currently, I’m sore all over with extra nerve sensitivity in my legs & shoulders. Next week it may change.
Now, if anyone is really interested, I’ll be happy to describe the pain and how it presents in my body. It’s actually very fascinating from a medical/physical standpoint and I think it’s intriguing. But that’s for another post if anyone is interested.
How, specifically, this presents in me is relevant for any of you who care to interact with me, and I feel it’s fair to let you know for two reasons:
- So you understand what’s happening to me and, perhaps, with those who also suffer from similar illnesses. Fibro is a strange illness and can be hard for those who don’t live with it to understand.
- You don’t act like it’s a bigger deal then it is. I am flaring. I have an illness. I am not contagious. I am still functional, capable and able to do most physical and mental activities though it may take me longer to do them and/or recover from them. Fibro sufferers need patience & understanding, not coddling.
My Fibromyalgia presents as follows:
- Chronic pain, usually starting in my right hip. Often spreading into nerve pain/tingling/strange sensations in my right leg. Currently this is happening on both hips & legs. IT is also spread to my low back, shoulders and arms.
- Exhaustion. I’ve been sleeping about 12-14 out of every 24 hours.
- Slowness of thought: there’s been a lot of me asking what other people said – things that are said too fast, my brain can’t process. Also, I’m forgetting my keys every which place. Not to mention my sentences & stories. I can be mid-thought and *poof* it’s gone.
- Strange mood swings. The tiredness & pain can spell out crankiness, quietness and even agreeableness. I am still Summer. I’m just confused, slow and forgetful, which is deeply frustrating to me. It’s also really hard to make decisions, so I’m happy to just go with the flow and am thrilled you still wanna hang out while I’m so out of sorts.
There’s a list of things I do to helps mitigate symptoms & prevents things from worsening. I’m in process of making sure all of those are up and running – if anyone is interested, I’ll be happy to write a detailed post on what those things are.
Should you be wondering what you can do to help, I have a list of things that really do help:
- Reach out. I hate to whine about my illness, and even saying I hurt feels like I am. If you ask how I am, it helps me to be able to talk about it a little, even if it’s just “I’m having a rough day.” Also, I do not want to talk solely about my illness. I am still a full person with work, life and interests and I am still interested in you and yours. Let’s talk about those things.
- Remember I’m still here. I’m not contagious, I don’t always need to stay home and rest, and that’s true of most people with chronic pain issues. It can sometimes be hard for me to make set plans, so being patient about accepting “maybe” and the possibility of last minute changes or cancellations is helpful. I want to be social, it’s just harder on me these days. I may have to pass on some social invitations, it’s not because I don’t want to go out – it’s because I can’t. I love you, my friends, it is not personal.
- Let’s do activities that aren’t as physically straining, or where we can have a backup when I reach the end of my energy level. I’m great with going shopping, biking or long walks. I just need patience when I have to slow down & rest.
- DO NOT FEEL BAD when you want to do something I am not up for. Invite me, let me say no, and then go do it anyway. If we’re out running, biking or hiking and I need to slow down, let me, but keep going full tilt if you want. I am okay with going at my own speed. I’ll catch up eventually. I do not expect you to make compromises on everything to my illness.
- Express your frustration at my illness at my illness, not at me. I am likely as frustrated, or more, as you are by any thing I’ve forgotten or plans I have to change at the last minute.
- Help me remember what we were talking about. I may forget what you were saying, or even why you were saying it. It’s not the I’m not paying attention, it’s that those neurons for overloaded and what you were saying got hijacked by pain info. I am trying really, really hard so a little bit of understanding on this is helpful.
- I have specific dietary needs. These are because of allergies & pain issues. Eating healthy, unprocessed, organic, sulfate free foods actually prevents pain from happening in my body. I can occasionally splurge and have a milkshake, but not all the time. Understanding that I’m not a picky eater, but have real dietary needs, and being patient about it really helps.
- Being out and around people helps. Sometimes my poor little brain & body will be overloaded with pain. I will simply sit there and sip my drink and listen to everyone talk around me. Pain makes me quiet. Just because I am quiet does not mean I am upset, disappointed, hurt or sad. It means I am quiet. Come talk to me if you like: I am mostly happy just to be sitting here with you, my friend, instead of at home alone.
- Don’t make decisions for me. Invite me, I may be up for a 12 mile ride tomorrow. Call me, I might be interested in helping out. Schedule that appointment, I certainly have the energy for work. Even if you think my answer will be “no” give me the chance to decide – who knows, I might be feeling better on a given day. And I’ll feel loved, wanted and involved because you invited me.
The most important thing I ever realized about chronic pain is this, and I hope you’ll remember it too:
I am going to be in pain. No matter whether I am at work, out with friends or staying in bed. I might as well go out, live my life and make the world better then just lay here like a lazy lump.
People with Fibromyalgia, like me, and most chronic pain/illness sufferers, simply need a little patience and understanding. I’m not asking for massive changes in behavior, just a little grace.
I miss you my friends. I need your help to get better and get through this. Let me know if there are any questions I can answer, things you wonder about, or anything you’d like explained in more detail. I’m happy to answer, or find the answer, to any questions you may have.