All posts by Misty Ewegen

I am a writer, a jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia and chronic daily migraine.

Advice from a Spoonie (part 2)…

Unfortunately my Trigeminal Neuralgia has reared it’s ugly face again and I am really struggling with pain. Not the heavy rhythmic daily pain of headache but rather the sudden, intense, mind-numbingly awful face pain that rips into my cheek and sets my gums on fire, lasts an eternity of minutes, and then fades as suddenly as it arrived leaving me a quivering mess of aftermath.

Like most spoonies I am very good at going still and keeping my face fairly passive and not showing my sudden and intense desire to curl up into a ball and tear at my face and scream because I don’t want to freak anybody out or have to answer EMT questions or for that matter any questions while I am experiencing that kind of pain.

However, as I descend further into more frequent bouts of this particular hell I will be hiding out in my cave more and more so I can curl up in a ball and make all the animal noises without freaking anybody out. Which got me thinking about my cave and the small, low spoon cost, things I do on a regular basis to make it my safe place. I thought I would share those with you.

  1. Don’t expect perfection. My space is often a bit messy. After all, I don’t always have the energy to keep it picked up and clean. I forgive myself the un-put-away slippers and pillows and pajamas and the unfolded clean laundry when I can’t get to it. However, the following are things I do to make my feel more comforted by my space when I am stuck in it for a while.
  2. Make the bed. It’s a rule for me. My morning ritual includes making the bed because there is a high likelihood I will end up in the bed and I want to feel as though it is an attractive and comfortable place to be. I also have leg rest pillows and a throw blanket on the made bed to support me in the event I end up there and to keep me warm without having to unmake the bed.  Also, any bedroom looks nicer when the bed is made, regardless of what else is going on with it, so you make a big impact on your space with very little effort.
  3. Fold the laundry. If you have the extra spoon, fold and put away your clean laundry. It always gives me a sense of satisfaction and helps me feel better to not have an obvious example of my lack of energy staring at me from the corner of the room while I am convalescing.
  4. Put your dirty clothes in a laundry basket out of sight. Once you have an empty basket put the clothes that have been dropped on the floor or a chair in the basket and then put it in the closet or another room. Out of sight. You clean up the space you are stuck in without leaving another looming reminder of the laundry you must now do in the corner of the room while you are convalescing.
  5. Have a distraction close at hand. If you read while you are in pain, have a book or two, if you crochet, have a basket of yarn. I have a small end table with a basket of watercolor pens and some paper next to the bed. That way if I am starting to feel better but should still really be resting in the aftermath of a pain spike I can take those out and do something without spending too many spoons.
  6. Scent and lighting. This one is very personal as many people are triggered by scents and light. I have a low wattage warm lamp I can turn on when I am having some bad photophobia that casts a cheerful glow about the room. Sometimes I can’t use it, sometimes I can. I also have NagChampa Incense that I burn. It is one of three or four scents that don’t make things worse for me. I find the pleasant scent and lighting makes me feel as though I am settling in to relax instead of settling in to suffer.
  7. Medication and Water. Find a way to keep them next to you. I have a pitcher of water in the room so I can refill my glass with very little effort and only need to ask for help refilling the pitcher. I also keep my medication next to the bed in an attractive box. Within reach but not likely to fall over while trying to retrieve one particular bottle, thus requiring me to get up and clean up another thing.

That’s it for today. It’s cold and snowy and my face is trying to kill me so I think I’ll curl up in my space and rest a bit.

I wish you a low pain level day!

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Advice from a spoonie …

Look! I made it back to the blog within a few weeks! Maybe I will get off my tuckus and start writing here on a normal basis again.

I’ve been thinking about getting into the realm of advising people on managing chronic pain with minimal medical intervention, after they have exhausted medical attempts without success of course. If you can find a working medical intervention use it, this shit sucks.

I have been painting a lot lately because I find it gentle enough to do on bad days and distracting enough to use as a pain management skill. As a result I am taking some online classes in art therapy coaching. Why not right?

So I got to thinking, what do I do to manage a headache that is nearly six years old? What are the things I do now, without thinking, that a relatively new daily headache sufferer wouldn’t think to do. So I thought I would give writing them down a try.

  1. Forgive yourself all the things. If you paint other people with your own disappointment at your limitations you will harm yourself. Most likely they are feeling sad that they can’t help you, not disappointed in what you can’t do.
  2. Set reasonable goals. Recognize that “Shower and dress” is a perfectly reasonable goal for an entire day. Feel good when you accomplish it.
  3. Be proud of your accomplishments. Do not, under any circumstances, compare your current accomplishments with your past accomplishments. They will never measure up.
  4. It’s okay to mourn your losses. You don’t have to keep a stiff upper lip. You’ve lost quite a lot, if not nearly everything. That’s hard. Cry, yell a little, talk about how unfair it is to someone you trust.
  5. It’s okay to have fun when you feel up to it. Especially early on friends and family can take a good day or a few good hours as a sign that you are getting better. It can start to feel like you should always behave in a way that reminds them you are sick so you don’t provide them with false hope. You don’t. If you feel decent, enjoy it. Bask in it like sunshine.
  6. Talk about what you are going through. I’ve found people are really understanding and cool about chronic illness so long as you give them a chance to understand. You can’t keep the bad parts hidden and expect your loved ones to magically get what you need. I tell people there is a high chance I will need to cancel plans with them when I make them. We reschedule a lot. I also tell them I may need to change plans from fun evening out to low key evening in. I talk about not being able to be in loud places or places with too much perfume. So long as I have been open about my limitations I have never had anyone be shitty with me about them.
  7. Don’t let your own guilt push you beyond your capability. You will make your next day much worse if you do. Possibly the one after that.
  8. Don’t self isolate. Find someone who experiences something similar to you to talk to, even if only over text or FB. Chronic pain isolates you naturally and it’s easy to turn into a hermit. I fight that every day. Try to find ways to join in activities with your friends and family, even if you have to ask for emergency back up plans. I have had to ask for friends to let me lie down in a spare bedroom until someone could come pick me up.
  9. Exercise. This one is tricky because it depends on your issue but I find exercise helps both my chronic migraine and my fibromyalgia. I walk whenever I can and try to add swimming and yoga regularly. Sometimes I succeed for weeks on end, other times I take weeks off. Chronic pain is like that. That’s ok too.
  10. Take care of your caregivers. You have limitations and they restrict what you can do but make sure you spend some of the spoons you have on the people who help you out the most. Do the extra dishes for your mom or spouse when you are feeling ok, listen to the troubles they are having even if you aren’t feeling ok. Hold their hand when that’s all you can do and always, always, tell them how much you appreciate their efforts and help. Make sure they feel they are more than just your caregiver, that they are your friend or mom or dad or spouse as well. Find a small thing you can do regularly to let them know it isn’t all about you despite the fact that you have a chronic illness.

That’s what comes to mind tonight. I am sure there will be more as I try to sleep, unsuccessfully. I hope you are all as well as can be and I wish you a night of good sleep and low pain levels.

Shadowboxer redux…

Today I am meeting with a new Physical Therapist because my last one, though effective, came with an unbelievable amount of drama.

My lovely old friend, the Shadowboxer, is back again in force. I assume the daily stress of my now five+ year long migraine results in me clenching my teeth, which tightens the muscles in my jaw, which triggers my trigeminal nerve, which sends earache pain, sinus pain, and just-slapped-in-the-face pain to my face.

It’s distracting at best and miserable at worst and I will go to virtually any length to reduce the symptoms.

Today that means having yet another person take acupuncture needles and thread them into the trigger points along my jawline and neck and wiggle them until the tight muscles twitch and release.

It’s not a party I really like attending but if it works I will be a happier and better person.

Spoonieku…

my hands, curled claws

my steps uneven, ragged.

old before my time.

 

I twist the door lock

move into the darkened room

rest becomes my life.

 

Sounds assail my head

light assaults my flimsy eyes

I’m made of paper.

 

Breathing uneven

energy completely gone

I collapse, undead.

 

Vigor is beauty

and vitality is youth.

I’m old, I’m ugly.

 

My clawed fingers

curl around my aching arms.

old before my time.

 

____________________

M. Morehead

So B-12 is important…

I was doing so well. I was blogging regularly and going to yoga two to three times a week and walking the dog and I switched to veganism to force myself to eat healthier and to lose weight.

Then I started getting so tired, the kind of tired I haven’t felt since having very young children. Then I started itching insanely, like chicken-pox or ants crawling under your skin.

Then I suggested my husband and I go see a movie I hadn’t seen, that I had seen three days earlier with my son.

Then I got scared.

I went to the doctor. Pled memory loss, balance issues, exhaustion. She checked blood levels and there it was; little to no B-12 in my system. Turns out being a female celiac over 40 eating a vegan diet put me right into the danger zone.

So I have been getting injections and slowly getting back to better.

Does your health ever feel like a house of cards? Like you just get it to balance and one misstep pushes everything the fuck over? It’s so frustrating to deal with and leaves me feeling as though I will never get to a place of stability.

Anyway, I am going to try to get back into the habit of yoga again this week. I fully intend to get my stretch on and get back on the path. Somewhere.

If at first you don’t succeed…

Go home and nurse your headache.

I gave notice at work. It turns out that I still can’t work full time. In the five weeks I have been working I have only managed to work one full week. I had hoped I could acclimate to a full time job in my field again but no.

In order to maintain my job I had to do a minimum of three hours of yoga classes a week, I had to walk to and from work, I needed a 90 minute massage a week, and I had to go to sleep in time to get ten hours a night during the week. So my 40 hour a week job was really 50 hours of out of the house time plus and extra 10 hours of sleep a week, leaving me exactly no time to:

  1. See my offspring who, after years of parenting, have grown accustomed to spending a few minutes with me a week.
  2. See my husband, especially since his days off and mine didn’t coordinate.
  3. Cook healthy food.
  4. Shop for healthy food.
  5. Clean the house.
  6. Do the laundry.
  7. Help my parents.
  8. Manage the garden.
  9. Clean up after the pets.
  10. See loved ones other than my immediate family.
  11. Paint in my new studio.
  12. Create jewelry.

The stress of being unable to do these things in conjunction with the physical stress of my working became too much. The fibromyalgia bloomed full force this week as I tried to settle back into work and I am all over knots and tightness.

So that’s it then. Now is not the time to try full time work. I gave three weeks notice, of which I have two weeks left. Soon I will return to my quiet studio and my spoonie-supportive life.