Tuesday, October 08, 2013

Living with someone with Fibromyalgia

As some of you know, Darlene has fibromyalgia. I can state that this is possibly one of the worst ailments to be afflicted with, mostly because people look at you and say, "You look alright." On the inside though, it's a different story.

Fibro is the type of ailment that makes your muscles feel like you do the day after a strenuous workout for the first time, with a generous helping of nerve pain for good measure. Darlene feels like this every day. On a scale of pain from 1-10, with 1 being none and 10 being "I want to die", she typically feels at a 7 or 8. On top of that, her pressure points (the parts of your body that come into contact with a solid object while sitting or lying) are extremely sensitive, making it difficult to sit on a hard chair, or a chair that digs into her thighs. She can't sleep on anything other than a good medium firmness memory foam mattress. She has a window of minimum and maximum strenuous effort she can do daily. Anything over that threshold and she suffers for the next few days. It means minimal walking, a set amount of exercise and a serious need for some good quality sleep. Speaking of sleep, Darlene is such a light sleeper, that she needs to wear earplugs and the room must be completely blacked-out or she doesn't sleep soundly.

Darlene's first challenge with fibro was the diagnosis. Years ago, fibro was not accepted by much of the medical community as a real ailment. Part of the problem is that many of the symptoms are similar to severe chronic depression. So Darlene was constantly being told by doctors that all she needed were anti-depressants and she would be fine. Not only did she already know (from trial and error) that this was incorrect, no doctors would listen to her pleas to consider that it might not be depression. Ironically, this made her severely depressed. It was a very bad time and it was all I could do to support her and give her hope that she would get some relief soon.

She finally found a specialist doctor that not only acknowledges fibro, the doctor is a sufferer herself, having began to experience the ailment while she attended medical school. Darlene's current family doctor acknowledges the ailment as well, which helps immensely. Her family doctor sent her to a pain management clinic to get various aspects of her health enhanced, because the healthier you are and the fewer other little maladies you have to deal with, the better your body is prepared to deal with the symptoms of fibro. This facility uses a multidisciplinary approach and hosts a cadre of medical professionals, including a pharmacist, physiotherapist, dietitian, kinesiologist, psychologist, orthopaedist and more. Together, these specialists helped Darlene plan a safe exercise regimen, got her proper orthotics for her footwear, got her on more effective medications and started her on a physiotherapy regimen. It is helping, taking her pain level down to 5 or 6 on good days.

A typical week goes like this: Thursday morning she usually feels good enough to go to work. Pain level at 5-6. But this assumes that she has no other health issues, like a cold or flu or anything else that could put a strain on her physiology or affect her sleep quality and quantity. That would also include stress. By the end of the first work day, all other things being perfect, she feels like a truck ran her over. Pain level 7-8. She just wants to go to bed, but she's in such pain, she can't get to sleep, sometimes until 2am. By Friday morning, She's at a 7. By Friday evening, she's at her typical worst - an 8. She's lucky to have the next 5 days to try to recover, but she looks after Olivia all day Sunday, so whatever gains she made on Saturday are mostly lost by Sunday evening. That leaves her Monday through Wednesday to recover in time to resume work on Thursday. All of this assumes no extra stress, no sickness, no injuries. Any of those amplify the pain values, especially bruises and strains.

Vacations help, as long as I don't push her too hard. Hot, humid locales help. Nobody know why. The lower altitude may play a factor as well. We're not sure. The cold in winter really exacerbates the pain.

Prescription drugs exist that can combat the pain, but they come at a price. The side effects are horrendous. Some of the drugs Darlene tried turned her into a zombie. Memory loss. Mood swings. Emotional sensitivity. Hot and cold sweats. Sleeplessness. Nausea and dizziness. What she's on now isn't too bad, but it only dulls the pain, it doesn't eliminate it.

She could have opted to go on disability like other fibro sufferers, but she would earn less money than she earns working 2 days a week. Seriously. She also would have forfeited her pension from work and have lost all of her health benefits, which come in handy to pay for the meds she depends on daily. She also would go insane. So instead of going on disability and forfeiting so much of what she has worked for over 19 years, she opted to cut her 5 day work week down to 2 days, which is the minimum she must work to still be eligible for a pension after working in her field for 32 years (and a much reduced pension at that). Lately, her trade was legislated to have to re-qualify to keep her job. Having to go back to night school and the stress surrounding study and exams over 3 years and the risk of losing her job if she fails the process has made her emotionally delicate. Yes, for those who are wondering, she sees a therapist.

Her biggest obstacles are the people around her. Because she looks fine, we all forget that she is in constant pain and has very limited physical stamina. Even I forget sometimes. On a beautiful Saturday, all I want to do is grab her by the hand and go for a walk. She often just wants to rest. Because she doesn't manifest any visible symptoms, her co-workers don't understand why she needs to do lighter work. Her daughter wants her to take a more active role in raising Olivia, but she's only got so much energy and stamina to go around and most days she feels like crap. Again, because Darlene looks fine on the outside, it's difficult for people to understand what the problem is and this is hard to deal with. When there's something to see, people tend to be more understanding. The attitude of some people is that maybe she's just not trying hard enough to find the magical cure. The fact is, many of the things purported to ease fibro are myths. The Mayo clinic in the US has acknowledged fibro now, so Darlene is hopeful that new breakthroughs and treatments might be found in the near future. At the moment, the ailment is still a bit of a medical mystery.

If we came into a giant monetary windfall, needless to say she would quit her job. We would also likely be spending significant time in a hotter locale during the winter.

I wouldn't wish fibromyalgia on my worst enemy.

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