Category Archives: Healing

Weight…

There’s a certain heaviness to chronic pain. It’s an ephemeral heaviness, a constriction of muscles a healthy person might get in a P90X class or carrying their neighbor’s couch into the house for them.

The neck muscles are tight, the shoulders are tense, the back aches, all from a mixture of “guarding” – the act of holding your body in a particular way to avoid or minimize pain – or a lack of activity from feeling to ill to do much.

Over time it becomes a literal weight. You wake up in the morning and in order to get up out of bed you have to consciously choose to pick that weight up and carry it again. You can feel the lovely release of sleep slip away and the various and sundry physical alerts begin to wake up in your body.

Hey there, your head really hurts today. Maybe the weather is kicking up.

Hi, jaw here, just wanted you to know that we’ve got some extra tension from that really great conversation you had last night so you’ll see some extra stabby moments from us today.

Um… yeah, it’s your back. You did something, or maybe you didn’t -hell I just work here- but whatever the reason you will be having some difficulty moving around today. I’m going on break.

You’ll get up and agree to carry these issues again because the other option is don’t get up. An option I hear some people choose but I personally believe all us spoonies choose to get up more than we choose to give up. So you move on with your day, dressing, maybe showering, eating, and then you will have other weights fall on you.

Joints here, did you know you can sprain your wrist picking up a box of cereal in the “wrong” way? No. Well now you do.

As you move through your day you will feel heavier and heavier until at last you are able to place the nearly overwhelming weight of your maladies into bed for a few hours of rest. If you can rest. If not, maybe a few hours of a good book or movie.

Sometimes the weight is harder to carry than others. Right now, for me, with the recent death of my wonderful and amazing support cat, I am really struggling to lift it all. I haven’t lifted a paint brush since she died. I feel all the pain more intensely without her here to help. My mind races with anxiety and possibility and doubt and fear. There is no furry face in my face forcing a distraction.

Without her support I find myself at sea, having to find new ways to carry the weight with me throughout each day.

In the meantime each little addition seems more personal, more targeted to make my day difficult instead of just something I have to move through.

My patience is frayed, I am restless and uncertain, and my body continues to pile it on, day after day, smothering me in the weight of a disease I cannot control.

So I shared some of it with you in the hopes the load lightens a little. Thank you for helping me carry it.

Up and at ’em…

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.

Why giving up is a good thing…

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.