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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