WeAreFibro.org - The Social Support Network for People Living with Fibromyalgia

Angel

This is an article I wrote on my own FM blog because this stuff is so hard to talk about with love ones! It's hard for us to explain, even on our best days. I've had people print it out and give it to family members, spouses, and friends. I hope this helps the spouses here in the community.

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A conclusion I reached while dealing with this disease on my own for the past year is that FMS is a lot like diabetes. Or rather an out of control diabetic. Mentally, we're the same. Angry, depressed, paranoid, combative, and hurting the people who love us the most. Having a relationship with us is just about impossible. A fellow FMS patient understands this. A non FMS person... a 'normal'... doesn't. Understanding the intricacies of emotions tied to chronic body pain just isn't something a normal COULD understand. A normal is on the outside in this regard.

There are so many quirky.. and sometimes I think downright STUPID... aspects of this disease that it makes me want to scream. It's not enough to say, "I really don't feel like I can do this today." Tomorrow I still may not be able to do it but for a completely different reason.

You want to go shopping? Great. The bottom of my feet feel like I'm walking on coals and my Achilles tendinitis is acting up. Tomorrow my equilibrium is so off that I'm walking into walls. So if we're going shopping I'll be hanging on your elbow the entire time. Don't mind arm candy? Fine. I'm your girl. Want to hug me and show me you care? That may be a no-go depending on how you are trying to hug me. I may be more apt to shrug you off and give you a kiss on the cheek instead because my arms, ribs, or neck hurts. It's not that I don't want to hug you. It's just that the alternative kiss is much less painful.

I think what I am essentially trying to say is: Don't take is personally. I know it's hard. I know it's frustrating as hell to deal with us. I know that sometimes you want to either slap us or choke the hell out of us because you think we're hypochondriacs.

Important Points To Remember

The phrase "I'm sick and tired of being sick and tired" has become become a fibromyalgic's mantra for life. That pretty much sums up our philosophy on chronic pain.

Fibromyalgia is not hypochondria. It is not laziness. It is not a mental defect. It is a real disease that affects the entire body, including the mind.

Fibromyalgia comes in all shapes, sizes, and age groups. Heavy, thin, apple, pear, stick, 5 years old to 80. Fibromyalgia doesn't care how old you are, who you are, or how big your bank account is. It also doesn't care whether you are male or female. It is found less in males, but this trend is changing either through misdiagnosis or an actual increase in the disease within the population.

Every day is different for us. Every week is different. Unpredictability is why this disease makes us as miserable as it does. If we could plan things, we would. One day we might be so down that we can only curl up in bed and medicate ourselves to oblivion or we are feeling so great that we do everything except fix the leaky faucet in the bathroom. And then again some do. (Fix the leaky faucet.)

What a fibromyalgic is thinking:

1) Social gatherings are a nightmare for us. We tend to avoid them like the plague. Why? The noise drives us batty. Think of us as having super sensitive hearing. (no, I'm not talking about selective hearing! lol) Loud noises cause us anxiety and make us tense up and for some of us bright lights can give us migraines within minutes.

2) All of our pain receptors are set on maximum. A 'friendly nudge' doesn't feel very friendly to us most of the time. Not that you should treat us like fragile porcelain dolls, but.... just treat us a little more gently than you would another person.

3) What works for you (a normal) when you are in pain is 99% of the time not going to work for us. My Mom(also fibromyalgic) likes heat. I adore ice. Heat makes me worse. Ice makes her worse. I love massages. She flinches and they make her worse. Needless to say, that Christmas gift certificate for a free massage was never purchased for her, although my intentions were good.

4) Sometimes we confuse the hell out of ourselves. And you. And then because you're confused you confuse us even more. Welcome to the world of fibro-fog. I remember having a conversation with the receptionist at my FMS clinic yesterday. We confused each other so badly that in the end we had to make a list of exactly what it was I was asking one point at a time. I think I tried to streamline the request and.... the message got lost in the translation. Luckily, she was accustomed to dealing with fibromyalgics on a daily basis and didn't let it ruffle her. That is not always the case with other people I deal with. They think I'm... slow. When I'm not!! I'm actually a very intelligent person. Some days I am better able to articulate what I'm thinking and on other days it feels like my brain is dyslexic and everything I do is wrong.

5) For those of us who drink alcohol it can easily become a very nasty habit. The reason is that alcohol is a natural muscle relaxant and eases the pains in our body. The medications we take can give us some side effects we'd rather not deal with so.... alcohol is GOOD! But too much of a good thing is bad. Just watch us for increased drinking behavior and if you're worried then say something. It's bad enough our kidneys naturally seem to hate us. Killing our liver is hardly a way to help ourselves.

6) If you catch us repeating things over and over again to ourselves, please don't laugh. We're trying to remember these items so that when we walk out of the room or our attention is diverted we don't immediately forget them. Having fibromyalgia is like having the memory of a goldfish. I can't tell you many times a day I get up and walk out of the room only to forget what I was setting out to do... nearly as soon as I arrive in the next room. So I have to walk BACK into the room I just left to figure out what I was trying to do. It's debilitating and increases our frustration and anxiety. We feel downright stupid at times. Making lists helps us. Makings lists help us survive our day.

7) We often do things and we don't know why. They're stupid things. Impulsive things. Like grabbing a hot pan off the stove without oven mitts to protect us. Just bandage us up and try not to yell at us. We can't explain why we do these things. It's like a brain/body filter that's broken. We have ingrained habits and body memory that puts us on autopilot most of the time. We rely on it to save us energy. But most of the time this creates situations where we can potentially hurt ourselves or others because of our attention span and focus not being where it should be. We can't 'snap out of' this fog. It's just how we exist.

8) Some fibromyalgics have become so accustomed to protecting themselves emotionally from upsets and being in situations where they will end up hurting physically that they make quite an art out of the White Lie. Or diverting a conversation away from themselves so they can maintain their facade of normalcy. Example: a fibromyalgic is really tired and wants their guest to go home. They say to their guest, "wow, you look kinda beat. Have you been sleeping well lately?" And so the conversation is then maneuvered around to appear as though it was the guest's idea to leave when the whole time it was the fibromyalgic who was the tired one.

9) If your fibromyalgic partner/lover/spouse seems to be saying, "Honey, I'm just not in the mood" more often than not... it's not YOU they are rejecting. They are rejecting the fact that having sex is too exhausting to even think about or seriously consider. Our libido suffers greatly from the chronic pain, fatigue, and medications we're on. Being supportive and patient with us often goes a long way to reassure us that you're not only interested in our worth between the sheets.

10) Our being stubborn and not wanting to compromise on how to do things is a personality trait which is aggravating for you to deal with but one which we use to protect ourselves in another way. We don't mean to seem selfish. But more often than not, the way we want to do things are the only way we can accomplish something in LESS pain or frustration than what you may be suggesting. If it's not a life or death scenario, the best way to circumvent an argument is to let us have our way. It's not that we think we're always right. It's just we know what is right for us.

How Can You Help?

Try not to smother us with concern. Hovering over us tends to make us feel awkward and more irritable.

If you want to help ease our pain, ask what works. Every fibromyalgic is different. If you want to do something to help long term then you can certainly research theories and approaches to FMS treatments. There are all sorts of, shall we say, Not Very Reputable treatments being advertised right now for FMS symptoms and even so-called cures. Check credentials. Check their research. RESEARCH their research!

Make sure we take our vitamins and eat right. Because we feel so crappy most of the time we tend not to eat very well. We grab whatever is handy, fast, and tastes good because we don't have the energy to cook. Keep healthy snacks and food in reach so that your fibromyalgic has better food options. (Hint: Leftovers from dinner already arranged on a plate and placed in the fridge for lunch the next day.)

Don't be worried if our sleep patterns are erratic. It comes with the territory. Most of us have insomnia issues that swing from one end of the spectrum to the other. For example, I can sleep 10 hours a night one week and the next week I only need 5 per night. Then again that 'afternoon nap' may end up lasting 6 hours. Don't panic! Just let us do what we feel we need to. Our body is starved of energy and we're getting back what little we can by doing what our body is telling us it needs to.


32 months ago