A new path…

August 19, 2017 Savvy Spoonie 1 Comment

A while ago I posted about the benefits of giving up. Since then I have been dealing with my pain mostly on my own. I have a muscle relaxant to take the edge off my fibro-stiff muscles and an anti-depressant to take the edge off living with daily pain. For emergencies I have vicodin, but I can only take one a week max.

So far I am happy to report things are pretty good. I still hurt every day. I still get stiff and sore and feel my joints like no 41 year old should. I still have a headache that will never, ever, end. However, I have my life back. I no longer spend three to four days a week making my family drive me to different specialists and physical therapists. I no longer have the added pain of recovering from procedures that don’t really seem to work. I am no longer dealing with huge amounts of medication side effects as my doctors cycle through them trying to trick my broken nervous system into thinking it’s better.

Instead I have time to blog again. I work in the garden. I paint. I paint a lot. I read and play games and hang out with my kids and take my dog for long walks. I cook dinner and can sometimes clean the house. I kind of have a normal life again.

I’m still falling down on spoon management from time to time. Today I just had to paint a new Empathy Fish and while I felt good during the painting process I can already feel the stress my decision caused my body. I got ambitious and tomorrow I will pay. However, so long as I am patient with myself I can manage this illness with exercise, mindfulness, a couple of helpful meds, and art.

Art has become my solace, my healer, my place of peace. Somehow in the last month I have turned on whatever neuron housed my painting ability and I am loving every minute I hold a brush. My headache recedes into the background as I mix color and create shapes and play with light. Somehow I can paint, nearly every day, even though everything else takes careful moderation. Maybe I have finally found something that takes fewer spoons than everything else.

So I have said goodbye to my life as a busy lawyer and advocate with a million charity events and causes to attend and am embracing my life as an artist. I will create, if nothing else, a place of less pain for myself and with any luck a few pieces of beauty that bring joy to a small section of the world.

Today I write this to remind myself during the hard days that I have days where I feel like this. Where I feel hopeful and strong and capable. Days when I don’t feel like less than my old self. Days when I even feel like more than I used to be.

Activism, Just me, Spoonie, Stress

Overload…

August 18, 2017 Savvy Spoonie 6 Comments

I can only begin this post by stating I am aware of the privileges I have as a white middle class woman. I recognize my experience is different from that of a person of color. In fact, I recognize my experience is different from that of a person with a visible disability, instead of my invisible illness. In societal terms I am, within the boundaries set forth for women, acceptable, and to a large point, welcome.

So I can only begin to imagine the stress my less welcomed fellow Americans are undergoing right now. I can only extrapolate from my own sense of powerlessness the helplessness they must be feeling. I share in their anger and dismay but I cannot fully understand how they feel.

I can only hope there is something I can do to help put an end to this madness.

There’s an added complexity for me, one that is the underlying cause of this post. My invisible illnesses are made significantly worse by emotional stress. I am literally making myself sick reading about everything that is going on with my beloved country every day. So I need to strike a balance between knowing what is happening so that I can find ways to help and giving myself space to process so I don’t make myself sicker. (Again, I recognize that being able to give myself that space is – in and of itself – a privilege.)

This is a concern I have heard repeated in the SpoonieSphere. Many spoonies want to help, want to make a difference, but are experiencing this same drain on their already limited resources. Many can’t march with protests, most don’t have extra money to donate. What are the best ways to help while still “putting on our oxygen masks first”?

Let’s begin by choosing some reputable news sources that come out once or twice a week. For example, Code Switch by NPR has been recommended along with New York Times’ The Daily . These two podcasts provide fairly thorough reporting on what’s happening in the U.S. You can also give British papers a read through, I find the U.K.’s take on our happenings to be less biased one way or another.

Second, there are some things we can do at home to help support the fight against hate.

You can stand against hate in social media. Confront those who spew hate, and loudly disavow it on your social platforms. Be one of the voices condemning it.
You can support your local marches and vigils, even if you can’t attend. Perhaps you can make a few signs and give them to the organizers to hand out to people, or you can use your social network to enhance the message of the protest.
Write to your representatives in the government. Let them know you stand against racism and you want them to stand against it to. Write to everyone who represents you. You can do it in email, through the post, or via petitions.
Personally message the people you know who are targets of these attacks. Send them a loving and supportive text or email or card. Call them. Let them know you are a member of their community who loves them and wants them to be there.

There are things we spoonies can do without making ourselves sick and we should do them. I don’t know about you but sitting around doing nothing is untenable for me.

Chronic pain, fibromyalgia, frustration, health

Beset…

August 17, 2017 Savvy Spoonie 3 Comments

Like many spoonies I spend a lot of my time trying not to look sick. It’s not because I don’t trust you to be sympathetic and supportive, it’s mostly because I get sick of my symptoms and want to be able to enjoy whatever event I am attending without paying too much lip service to them.

However, they are always there, hiding in the background and working hard to pull my attention away from your story, the movie, or the amazing meal you cooked. I have to chastise them like poorly behaved toddlers to keep them in line.

Which is why I hate getting sick on top of being chronically ill. That nasty, achy, flu-like, feeling you get with a fever is a daily occurrence thanks to my Fibromyalgia, so when I have an actual fever things suck.

It begins with me feeling like my body is filled with jagged pieces of glass when I move. Everything hurts. Then when I lie still everything hurts. (It turns out lying on jagged pieces of glass isn’t pleasant). Then I will get cold, really cold, deep freezer cold, but the second I pull up the blankets I am boiling hot. Lobster death hot.

At this point I will recognize something else is going on. I will take my temperature, it will be high. I will feel completely and irrationally betrayed by this additional invasion of my already sick body. Shouldn’t I get some kind of “Get of the flu free” card? I have a chronic daily illness, well two actually, shouldn’t that make my body a no fly zone for summer colds, winter flus, and the bacterial crap that hovers around polite society waiting to turn us all into wretched piles of indiscreet bodily functions?

I have become incapable of pushing through colds. I guess it’s because my daily push is so much work that adding the extra layer of suck renders me a wibbly wobbly mess. Every single thing becomes a personal affront to me. I cannot handle the smallest difficulty.

So today, on day two of fever and suck, I feel beset by my illnesses, both chronic and extra. I feel like a presentation exhibit for “What can go wrong with the human body”.