Category Archives: tolerance


I am part of a prayer and support group on Facebook. It’s been awesome. A place to come together and pray for each other and share concerns. But now I’m heated and have been getting on less. There are a few new members who preach fire and brimstone. Apparently we just need to cleanse our bodies with certain foods, read the Bible more, go to church more, pray more, and just do better and we will feel better. Apparently the devil is lurking over our shoulders ready to pounce on us. The group is such a special place I hate that these people feel it necessary to troll a Christian gathering.

So being me, I asked one if she is a chronically ill person. Its been almost a week and I’m still waiting.

There is another troll just like that on my Psychosis support group. Its just now helpful.

The support group for Chronically pain people is Rest Ministries Sunroom, it really is a nice group for sharing and praying together.

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Filed under migraine/headache, Random, tolerance

Naproxen, my first pain med

I started feeling non-stop pain in March of 2005. A few months ago I had an altercation with some light monsters. At my doctor’s appoint last month we decided that an episode of extreme light sensitivity should be avoided. The pain doctor prescribed me Naproxen. He explains to take it as needed for when it gets bad but no more than 2 pills a week. I get the bottle and there are ten pills inside for a month.

I did not ask for these. I felt like the pain had defeated me somehow. I’ve gone about 9 years without any. To me it’s huh, this sucks. To others’ it’s, yes finally; something you should have been taking for a long time now.

I take one pill and sleep for the majority of two days.

It’s great. Sleeping through an awful migraine is nice but I miss out on everything for two days but the chances of enhanced sensitivity are stronger now but I have to take medicine. Weird toss up.

I feel like I have to report to someone. “Hey, I’m taking a pain pill.” Or I wait until someone tells me to go take one. I don’t know when I have reached the threshold of go take the pain medicine. And then I write it down so that I don’t accidently take more than two that week. It is weird internal dialogue.

I believe the most important thing is that the pills brought relief to my caregivers. And we are thankful for the ability to be proactive instead of solely reactive to unbearable pain levels. Hopefully, we won’t have to go back to the ER for a long time.

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Filed under family, migraine/headache, Pain managment, tolerance

RX Incandescent Light Bulb


“Warning: This halogen lamp may cause migraines from Hell that hurt more then the ones that florescent lights may cause because we mimic the infernal midday sun.”

The store in town, and the Walmart and Target nearest you did not have my blessed incandescent 30-ish watt bulbs (or 15). The lowest was 60 watts, I cannot handle that many lumens all day. We found out that some stores have decided to stop caring them because of this new energy saving incandescent bulb. Halogen lamps. The store’s lowest watt was 45 in the halogen. However the lumens are lower per a watt, so we thought okay. (Halogen 310 lumens vs normal 450 lumens for a 45). NO, not okay. I have not been well at all. So looked up how halogen lamps work. It emits blue rays. The kind that the sun gives off, so its a brighter and clearer light. It is a migraine’s playing ground.

The midday sun the promotional information says. I think its been 11 years since I appreciated the sunshine, least of all the midday sun.

It was like we kicked out a tiger and invited a platypus to live with us.

I read that in the UK you have to have a prescription to have the regular incandescent light bulbs. I think that the pharmaceutical companies are getting to much power and soon we will be giving them even more. We will be wasting doctors time and waiting in line at the drug store to buy light bulbs from the pharmacy. And we will be paying 50$ a bulb. For a bulb that right now we can buy in four packs for less then 5$. This is ridiculous.

Next time I see them I think we will buy all of them on the shelf that I can afford.


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Filed under migraine/headache, pain, Pain managment, tolerance, Treatments

No Spoons for You!

If Grandpa wasn’t standing there. If he had seen. If my surroundings had not suddenly collapsed. Or if we were not surrounded by family she was meeting for the first time. I would have  given my step-grandmother, the retired nurse, a piece of my mind.

She just wanted to see me smile, she didn’t know any better. Yeah, right, the nurse had no idea.

I experience allodynia all the time. It gives me extra little bursts of pain when I am touched. Usually it only presents on my head and face. She knows this, I told her the first time she patted my head like a good little child and the time she laid hands on me to pray. I wish she didn’t have the psychological need to touch people.

The family re-union began early Sunday morning with a church and memorial service (we remember all who have died since we gathered last). It was a nice service, Mom gave a good sermon, distant cousin did the memorial, and we sang/prayed. So, typical noise and light trigger fest that I was expecting. In-between the service and family meal, step-grandmother slinks over and bends over the pew in front of me. She grabbed my face and started patting it and squishes it together a little. Then she kept patting my cheek as she patted the bottom of my chin. I think my brain began playing a bit of impromptu soccer.

I must be really good or she sees what she wants to. Somewhere a thought boomed, smile idiot or every single person here is going to know you feel like crap and why because she will announce it to the 100+ people here. It was just me there, my keeper of the day was in  the bathroom. To my luck she says I love it when you smile..and then asked for my Mom. She did it to make me SMILE. I had to hurry and get myself back into check before I started to cry or the before extended family noticed.

I learned pained face can look like a smile. I can’t figure out why she would have stopped otherwise.

Smiling is something I practice. When I look into the mirror I try while looking at an old photo and get frustrated with myself. I watch comedies, read the funnies, and keep up with things I am suppose to laugh at. I practice. Smiling is a skill that healthy people take for granted, I did. I was that annoying person who smiled for no reason. I was often told I smiled too much or was too happy. I giggled and laughed easily. But now it’s hard. I can feel the vibrations of laughter in my skull. Giggling is tiring. Smiling is hard when your physical pain is so consuming. I was in acting before I got sick. So I can smile while engaged with someone, it takes effort but the smile can look natural. When engaged with someone I can even get distracted enough to make small smiles and soft laughter naturally. I have learned to laugh silently. My niece gets a kick out of it. It all takes practice and concentration. It might sound silly, but part of me is afraid that I will forget how to express happiness so I practice.

It is almost an insult to be told to smile. It is unkind to make someone feel like their best efforts to function in an hostile environment is not good enough. Especially by someone who knows why the environment is hostile. It is unfair to have to hold all the things you want to tell the jerk in because of what others think are okay excuses, her age, family status, grandpa, her feelings, she probably doesn’t remember, trying to show they care.

My real grandma taught me that it is more important that I go to these things then to put on a happy face or even interact with anyone. It is about effort and showing that I care. She said that I should pick the most comfortable spot and if anyone wanted to see me they could come to me. She would say that anyone who did not appreciate the effort of showing up wasn’t worth my time. Now, they didn’t have to come see me to appreciate my effort, they just had to respect the fact that I am a disabled person who needs control over my environment and can become overwhelmed by crowds. I am making a statement to you by being here. I am giving up all my spoons to be here. It might might end up taking everything I can muster today, but I wanted to be here. Grandma also said its okay not to go, don’t try to give out spoons you don’t have. It is like stealing, only jail is the hospital. When you don’t go it is their responsibility to show caring: we missed you, take care, there will be another time, do you need.

I do not understand step-grandmother. All she had to do to see me smile was to engage me in conversation. She does something uncaring every time I see her. I am told it’s because she cares. She violated the spoons. Grandma took years to teach my extended family a way to be around me without being awkward or fearful. Step-grandmother is announcing that I don’t meet her requirements, I do not cope with my illness well enough, I cannot function well enough to be presented in society. The time before she actually said that I am still sick because my mom, gramma, and deceased grandma did not care for me well enough. I find it ironic that in my immediate family I’m the nicest and most tolerant, so before we met her I was chosen to create that bridge of acceptance into the family for her.

I have not been patted on the cheek since I was a child. Grandma did it saying I was a cute rascal. When being treated like a five-year-old I really want to act like one. Five-year-olds are allowed to cry, be crabby, and whine when it hurts. They can tell people off and be the worse brat imaginable because of a boo-boo. Makes me want to be 5.

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Filed under pain, Spoon Theory, tolerance