Fibronews

From Gwen Duda McBride of Saskatoon, Canada

I had to write you to respond to the individual’s letter about the family member who has fibromyalgia who is burning him out with what sounds like a minute by minute commentary on their health. News alert – nobody wants to hear a minute by minute commentary of anyone’s health, be it fantastic “Oh I ran 15 miles an hour ago and I feel GREAT” or deplorable “I just took my morphine and am still in pain”. It either makes us feel inadequate or powerless. However, maybe some people who do have fibromyalgia would find some benefit in finding someone who can listen to them other than their family members. I know I do.

I have fibromyalgia, chronic fatigue and some other fun things however I am not the type of person to complain about it. That has been part of the problem. I ignored my body for decades, pushing it to do my own plus usually 2 or 3 other people’s responsibilities day in, day out. I didn’t bother talking about how bad I felt most days until I was hauled into my boss’s office over their concern of my degrading job performance due to the cognitive problems of the condition. Needless to say I had to step down from that job and the financial rewards it offered.

Yes some people go on and on and bloody on about it but others don’t. We each have our style of coping with this crappy condition but do remember that we truly are in this together, all of us. My husband suffers from severe chronic exhaustion and there are days when I get frustrated with how little he is able to do and I again, pick up the slack, but then I stop myself. It is easy to forget about being compassionate when we feel so exhausted and sick ourselves.

Life is difficult at best and we really do need to each pull our own weight in all ways as much as possible. I have found that cognitive therapy has been very helpful to keep things in perspective emotionally. I think myself I have worn out my welcome with two friends from my pre-FM days but they too were fighting their own demons and having to deal with my stuff as well was too much for them.

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This illness is a very difficult, gruelling long distance marathon and we must keep our heads about us and our hearts. I truly can relate.

[The suggestions below] are in response to the family member who was feeling burned out by his mate’s fm and her all day long play by play of the illness. He asked for help with that, well here are my suggestions. I have had FM and chronic fatigue for over 10 years. I lost a marriage, a house and a career to this illness and now have a different life, an apartment and a new husband.

1). Allocate a few minutes, that’s right, minutes to exchange information on how you BOTH are feeling that day. My partner also has chronic fatigue and other ailments so when we get up each day we ask how each other slept along with how we are feeling and wait for the information. Then we see what each other needs to do and then would like to do, energy depending. Bar anything changing (i.e. developing a migraine and having to cancel a shopping trip we promised to do that day, etc.) that’s it. If one of us is feeling extra-special-crappy we mention it briefly before informing the other we are going to lay down for awhile and to keep it down. To continue a play by play of how crappy we feel and how that morphes throughout the day would steal us of what precious energy we have to do other things!

2) For both the FM mate and non-FM, have friends you can talk to about your illness and the financial, emotional, physical, social, relational and mental fallout of that.

3) So you don’t burn out both your family and friends seek out professional help be it a therapist, social worker, psychologist, psychiatrist, counselor, priest, minister, nun, monk, dog, cat, horse, budgie, etc. I highly recommend dogs and cats, they’re cheaper and usually better listeners.

4) Aside from what you need to do for your illness like exercise, taking medication and/ or other treatments, forget about your illness as much as possible. Yep, you heard it. Try and have as “normal” a life as possible. There are days or weeks when FM and or CFS will lay you flat, but don’t give it what it doesn’t fight for.

5) Replace old hobbies or sports you use to do with new ones that don’t tax you out as much or at all.

6) Grow up. I know that sounds harsh but it has been my experience that I played a part in getting sick and I must play the primary role in getting as well as I can. Sometimes I become so overwhelmed with feeling ill that the only way to not drown in it is to turn outside of myself. Call up someone and ask how they are doing – then listen. This trick has helped a number of times. Also I have just had to sit with it. This illness has taught me to have compassion for the millions of people in the world who suffer with illness and poverty. I now know what that feels like and yet I still have it better than the majority of people on the planet.

7) Effective and respectful communication. Take an hour at least once a week just to take a pulse on your relationship. Talk to each other, remember why you got together in the first place. Discuss frankly what is happening without criticism. Then develop an action plan to address it. Just lately we discussed that we both felt depressed. I had been feeling irritable and impatient. We decided to do something we hadn’t done in ages, go out for dinner and a movie, a comedy only! We did and when we got back it felt like we had done a trip to Europe!!! It greatly elevated our mood and with FM depression can be a real danger. So lighten up with each other as much as possible – laugh together.

So there is just few things that may be helpful if they so choose to use them. Good luck and don’t let this illness rob you of what joy remains.

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We are here to help!!! Sorry for the delay I have been going through a flare!