Category Archives: Healing

fibromyalgia, Healing, health, Just me

Up and at ’em…

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Things are brewing. My paintings are gaining a modicum of popularity, a complete stranger bought something from my Amazon Handmade page, and Pirate Fest is coming up in about three weeks.

I am determined not to give in to the desire to flounder.

Having said that, I have something I have to do and I admit I don’t want to.

I have to, HAVE TO, treat my body better. I stretch a bit and walk almost every day, but it’s been years since I really pushed myself to exercise. This is really stupid of me because all the literature says the only thing that really helps Fibromyalgia is exercise.

In the past I haven’t exercised as much as I should because I was working. Now I am not. I no longer follow the 40 – 60 hour a week schedule I used to use as an excuse to stay away from the gym.

So my doctors have suggested it, the literature suggests it, I have time for it, why am I not shaking my booty?

I think I’m scared. I think I am afraid I will be disappointed or embarrassed by my limitations, which really is stupid because I’m the only one whose going to be around really so why would I be embarrassed?

Ugh. Maybe it’s just easier to walk and call it good. Who knows. All I do know is the excuses are gone, the medical situation calls for it, and if I am really going to try and manage my symptoms with minimal medication I have no excuses for not exercising my way to a more well managed disease.

So. Swimming twice a week. Crunches every day. 15 minutes of yoga when I wake up and 15 minutes before I go to sleep. Arm exercises with my wrist weights on when I am resting in bed. Then maybe, just maybe, I can get myself to run again.

Time to program the new Vivofit, set myself some goals, and get up and at ’em.

Healing, health, Just me

Why giving up is a good thing…

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I was having a conversation with a fellow Spoonie the other day and we were expressing our frustration with friends and family that keep telling us not to give up. I should be clear that both she and I have been to all the doctors and have tried all the medications and every treatment that isn’t brain surgery. She has had her headache for 13 years and I have had mine for 3 going on 4. This isn’t life threatening but there is no end in sight.

I don’t believe people are ill intentioned when they urge a chronically ill person to keep fighting but I don’t think they understand why we are better off if we give up.

There comes a time in the daily struggle of someone with an untreatable chronic illness when they are faced with a choice; either they continue to try all the treatments and medications and experimental stuff that has even the tiniest chance of curing them while bringing them untold discomforts in side effects and recovery times or they can acknowledge they aren’t going to find a magical cure and learn to live with their illness.

I have chosen the latter and so has my friend. We have given up and I, for one, haven’t felt this good in a damn long time.

I still hurt every day. I am still ruled by a headache that will be debilitating one day and not so bad the next with little or no consistency. However, I am no longer experiencing a long list of horrible side effects from ineffective medications. I am not going to see three or four specialists multiple times a week to the exclusion of living my life. I am no longer recovering from treatments or spending weeks in the hospital. Since giving up on a cure I have trained to be a silversmith, set up a studio in my basement, become a more attentive and involved mother, and kicked ass getting our house organized. I have begun to keep regular get togethers with friends. I have learned to manage my spoons, take rest days when I need them, and not feel guilty about canceling plans on bad days.

My energy now goes into managing my symptoms. I stopped taking all daily headache medications. I stopped taking all daily fibromyalgia medications. I use mindfulness, tea, and when it’s really bad tramadol to manage my pain. I exercise every day. I sleep as long as I need to. I listen to my body and I try not to judge myself when I have to rest.

I am living a fuller and happier life since I have given up the search for a cure than I have in a long, long time.

Giving up on a cure and the idea that this is all somehow temporary and accepting that I am disabled has freed my spoons up for learning how to live within my capabilities. I am feeling capable now because I am no longer comparing myself to healthy people. I am content carving out a satisfying existence within my limitations.

So, next time someone with a chronic illness is telling you they have given up I encourage you to rein in the urge to tell them to keep fighting. What they are likely telling you is that they are ready to learn how to build a full and happy life now instead of living for the day when they are magically healed.

Chronic Pain, Connection, family, frustration, grief, Healing, Migraine, Observations, Self over analysis

So not self-helpful…

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I think I may have PTSD when it comes to self-help books, books on migraines, or generally any written device intended to explain to me how to make my current state in life better.

I have been trying to unwrap why I loathe self-help lately and I have hit upon a theory. It’s a relatively new theory so bear with me but here we go.

Ours is a society of the quick fix. If we have a cold and can’t sleep we take NyQuil. If we have a cold and need to go to work we take DayQuil. What we don’t do is rest long enough for our bodies to battle the cold on their own.

Due to our quick fix mentality we have a tendency to offer solutions to the people in our lives who express problems. We rarely actually commiserate. It’s not because we don’t feel sympathy or even empathy for them, but our language of caring has morphed over time from listening and empathizing to offering solutions.

As a migraine sufferer I have had a lot of experience on the receiving end of solutions. It doesn’t bother me from friends or family but it’s the complete strangers that make me crazy. Usually when I meet someone and they find out I have migraines I get asked my entire medical history by someone without a medical degree because their fourth cousin once removed has migraines and maybe they can mention something my nationally recognized neurologist hasn’t thought of yet. It is exhausting and not a way I want to spend one of the rare times I actually leave my house to go out into the world.

I think this is why I hate self-help mechanisms. Rather than listening to each other, talking about our feelings, and creating deep, strong bonds of friendship we are offering other people’s takes on our interpretations of someone else’s problem.

Meet someone at a party going through a divorce? Offer them this book. Got a brother with MS? Here’s a book on how one person worked through their experience with it. Children being… children? Here’s a book on how to parent in a way the person who wrote the book likes most.

Now I am not saying seeking self-help is a bad thing. Personally, if you want to read books on parenting, relationships, investing, whatever medical diseases you may have, and that helps you handle life, go for it with my blessing! There is nothing wrong in my mind about seeking out information.

What upsets me is offering these unsolicited solutions to others in lieu of care.

I get it, caring is hard. It’s time consuming, it takes real listening and empathizing to truly succeed at it and none of us have the time or the energy.

Is that last part true though? Would we find consoling someone less tiring if we did it more often? Could it be we are out of practice and therefore it seems more tiring and time consuming then it truly is?

Here’s my truth: My best memories are from times when I opened up my mind and heart and joined someone in their hardships. Really joined them. Crawled down into the hole they were stuck in and sat with them for a while. I have been blessed enough to build truly amazing relationships with people because I was simply sitting with them and listening when they were having a hard day.

Sometimes the way to be the most helpful is to offer no help whatsoever.