I was doing some research, as I do, about feeling like you hair is being ripped out of your head. I learn: they should be looked at as two different things, I pity the fool, and I would respond “what, no” a lot if I had accounts to everything.
Most important, I learned that is a mechanism the brain uses to tell the body when it has been in pain for to long, your brain saying it has been in pain for an extended period of time. Like yo I’ve been in pain for to long. Like I didn’t already know that.
I have frequent periods of time when “my hair hurt.” A slight breeze or ceiling fan will make me wonder how I would look if I shaved my head. I can not tolerate hats, ponytails, touching my hair (even the ends), running my fingers in it, dramatic hair flips are definitely out of the question. Can’t style, brush, wash, do anything to my hair really. Pulling my hair back in two loose braids were acceptable, it kept it from moving which is the worse part of “my hair hurts” while not pulling at any stands. I literally feels like the stands of hair hurt. Also my scalp will hurt if I touch it. I know it is impossible, it is hard to explain, but they do hurt.
My “hair being ripped out of my head” sensation is not hard to explain. Literally feels like someone has skillfully grasped every stand of hair and is pulling them out by the roots making a bloody mess. I keep checking to see if my hair is put up in a bun. I have no idea how to put my hair in a bun but I think all my hair would go into a skill full bun. I tried putting my hair up, no difference good or bad. Touched my scalp, that does hurt a bit more. This is so weird and painful. I’m dizzy and blurry and dizzy.
I pity the fool! Someone who looks at their friends brother’s cousin’s niceness’s daughter’s best friend’s condition that has a symptom of bleeding to tell you what you need to do and misses their own nose bleed. I should not have seen that comment: oh my friend says that is called “my hair hurts” its nothing here is some of the others thing you can expect… Um no. If its a symptom no symptom is nothing. I pity the fool who thinks they understand us misfits. Do you remember that when Mr T said that he pitied the fool because he had something coming to him because the bad guy was a fool? Proverbs 26 tells us to pity the fool the same way as Mr. T.
I made the worse decision of my week about an hour ago. But let start about two days ago. I started to have this weird sensation like ever piece of my hair was being pulled, a little more painful that putting your hair up to tightly in a bun. I went to pull my hair down, forgetting that my hair isn’t long enough to put it all in a ponytail. My hair was all the way down. My thought was well this is new. I thought I was coming down from a horrid migraine, I think it was running a marathon, it must of started to fall down and grabbed my hair on the way down trying to pull itself back up. I was feeling better this morning, mild dizziness, that hair pulling pain toned down, and slightly blurred vision. So I did good thing activities and took a nap,. I wake from this nape and run my fingers through my hair because it is all over. You would think my brain that it was the end of the world as we know it, Jesus is coming to town and the migraine wants front row seats. Pulling my hair like it’s the only way to delicious pastries, Rapunzel’s house here we come. Except I don’t think we could actually physically get there if we relied on my walking skills, I forgot to figure those in when making my character and I roll snake eyes way to often.
I had one of my more painful Botox experiences Thursday, it feels like I had it a few hours ago. I cannot tolerate form fitting clothes, bras, long sleeves, anything you have to tug, fitted pants, jeans, my fall jacket…basically 90% of my wardrobe. I am comfy in my PJs and sweat pants with t-shirts. So I have been staying in my PJs because it is also painful to change clothes. It was so bad Thursday Mom had to help me into my PJs.
So I have nothing to wear to church tomorrow. I like dressing up for church, it is my only occasion to wear my pretty clothes. I do have one dress that would be okay but I haven’t been able to shave for two weeks and I am not able to put on tights. I am so sad. I am going to visit my Uni, which means I will be visiting her church if we make it. Looking like a hobo at my church is okay, it is a small country church and I am comfy saying I had Botox and it was to hard today. They will be understanding. Uni goes to a bigger church and no one will notice if we skip. But people do semi-causal to dressy. No one would say anything and hobo outfit to tired college student would be okay, Uni would even join me in the look. It would just feel awkward.
My illness creates awkward social situations and misunderstandings frequently. The important thing to remember is to turn them into teaching opportunities instead out outbursts that makes everyone in listening range uncomfortable. Yes my clothes are not exactly what they should be. I am a preacher’s kid, I know better. However there is a reason, my illness is making the ability to be fully dressed impossible today. Maybe tie in some theology or academic theory to help put the problem into a context to help the person to better understand why jumping to such conclusions is hurtful and prejudice. Explain how illness touches every aspect, no matter how small, of our lives.
Migraine can affect every aspect of life. From triggers to symptoms and more, sharing about it can help us in knowing we’re not alone with our frustrations.
Source: Most Frustrating Thing About Migraine? – Migraine.com
In one word? Excruciating.
Source: This Is What A Migraine Physically Feels Like
This is some fun art based on descriptions of a migraine.
Yellow awareness ribbon suicide, The Incredibles, Omnidroids robot, and Edna Mode’s motto, “I never look back darling, it distracts from the now.”
Suicide is the biggest killer of those of us in chronic pain. Depression and suicidal tendencies can be even harder for us to battle when they are side-effects of our medicine. It is a monster we must battle and slay to survive. The battle takes time and it is a repetitive occurrence. I chose the Omnidriod because the word means “in all thing” and “robot”. This is a robot that has been built and programmed to be awesome at destroying all things. And in the end it destroys itself. Suicidal thoughts is the emotional equivalent to the Omnidriod. But it can be defeated. One way is to look forward, make plans for the future, and nurture your hope in all ways possible. I like Edna Mode’s attitude, learn from your past but do not dwell on it. Dwelling takes away your future. I am guilty of dwelling sometimes on who I used to be and what I use to be able to do, but it is gone now. The only way to learn to be happy with our new selves is to accept yourself for who you are now and learn to love the new you. Do that you need to look to the future and your new gifts and interests and to not get distracted from the now.
Migraine ribbon (purple and maroon), Belle’s book, “You don’t loose hope love, if you do, you loose everything.” said by Mrs Potts.
This is one of my favorite Disney movies. I think that the importance of books is often over looked in “Beauty and the Beast.” Belle and Beast bonded over books, over using their imaginations to go on adventures together. They knew the power and magic that a good story brings. It is something that we can use to cope with our struggles. Remember how important hope was in the story of “Beauty and the Beast’? Mrs. Potts said something very true, we need hope, if we loose it we loose everything. If we loose hope we loose the ability to fight for a better normal.
What is it like being in pain all the time?
- What is it like not to be in pain? This is always my first reaction to this question. No one who asks me this question can answer mine. Sometimes I wonder if I could explain it better if I could remember what it felt like to be pain free.
- Imagine hitting your head on something really hard, like the edge of a car door, the person on the other side of the car herd the whack. Now imagine all you can see is white blinding light for a moment and you get a little dizzy. This is how hard you have hit yourself. Now try to imagine that it keeps going and going like the Energizer Bunny. You take pills but nothing stops the Energizer Bunny.
- It is tiring, draining, it wears you out, makes you sleepy. No matter how much sleep I get I still feel like I could use more. Fatigue is not a fun companion. Effects my quality of sleep, memory, concentration, and can cause sore muscles.
- Pill popping is a hassle. It is expensive. The side-effects are not nice: sensitivity to sunlight, loss of appetite, taste changes, dizziness, decreased mental power, fatigue, muscle weakness… have you ever read the side-effect list of a drug? Society is not kind to those who have to take pills while they are out and about. In college I was called a druggie and was even accused of illegal drug taking.
- I am sorry but would you turn down your noise? I am always sorry. Before I got sick a rarely had to apologize for anything, now I am always saying I am sorry for something. I miss engagements, talk nonsense, bother others, clumsy, being a downer…. I apologize for asking for help even. I apologize for not getting better.
- It is embarrassing. Wipe-out! Falls and almost falls are embarrassing. Being told to be decent and not hold hands/link arms in public by those who think they have the right to reprimand you is embarrassing. Having to give the same explanation over and over again is embarrassing. The fact that I cannot get better is not pleasant and many take the opportunity to make me feel like crap about it.
- Stressful. There is no such thing as a stress-free environment. Boredom is stressful. How others react, thinking about how others are going to react to you, wondering how to respond, the doctor, remembering to order meds on time, avoiding triggers, and making sure you are keeping up with everything is stressful. It also causes anxiety and is worrisome.
- Work like an overachiever for average results. It takes more time and energy to do everything so you work harder than everyone else while being told you do not try hard enough.
- It is lonely. I have a hard time with light and sound so I spend a lot of time alone in my room. People do not want a person who is obviously not feeling well around so I only go out when on really good days. It can also feel lonely while being surrounded by people because even though your there it doesn’t mean you’re well enough to actually participate. When your surrounded by people who refuse to understand you it is also lonely, they can make you feel like you don’t belong.
- You learn to make light of everything. We start to find humor everywhere. You make jokes and people just stare at you. It is suddenly funny watching your doctor become frustrated as he tries to get your injection spot to stop bleeding because despite his heroic efforts blood is still pouring down your face. Or fun to see in what way people are going to react to your body. Or that you can’t stand up today, again. Find shapes in your auras, like they are clouds. You come to smile at the jokes your body plays on you. You can because your focused on positive outcomes, not the nightmare around you.
- You understand your body. You have to be able to read the signals your body sends you to avoid disasters. You can even get to the point where you understand your illness better than your doctor.
- Your always expecting or waiting for good news. Even if you know there is no good news to be had you ask the doctor for it. Good news, your blood pressure is normal. It might be the only good news, and it might have never been abnormal, but it is something to get excited about.
- People start calling you weird things like courageous, survivor, or determined. You may think that you are just doing what you need to get by, but they have a point.
Fairy Godmother’s magic, blue ribbon, Chronic Fatigue Syndrome. “Even miracles take a little time’ The Fairy Godmother.
Waiting is what we learn to do best. Waiting can pay off because “even miracles take a little time” and effort. A better normal is possible.
What do you do to keep it real and recognize the reality of illness and chronic pain, so that you really can still find some joy in life? How does humor play into your coping skills?
The reality of migraines is that is hurts and turns your brain against you. The reality of epilepsy is that your brain is not reliable, you are going to have black outs and it is going to hurt. The reality of both is loss: social and physical. But there is another reality of new adventures. It is suddenly an adventure to walk to the kitchen or go to the store. You get excited about things that others thing “okay…” You find joy in small things like the dog acknowledging you or a favorite band releasing a ballad. We have good reason not to be happy. If we focus on the negative of being ill, living with pain, we miss the reasons we have to feel joy. We can find happiness in our hobbies, family, each other, pets, enjoying TV shows, music, or finishing projects. The fills us with joy when we trust in Him and follow the paths he has planned for us.
I use humor as a coping mechanism. I think it is an important one. There are a lot of different kinds of humor: comedy, irony, jokes, dark comedy. They all have their place in helping us handle what is happening to us. Dark comedy and irony can help us understand and talk about what is happening to our bodies without getting stressed or scared. These can also help us teach others about what it is like to live like this. Comedy, stand-up, sitcoms, the stuff everyone generally agrees is fun, helps us smile and laugh. Laughter has many health benefits which we should not ignore. “Oh that is cute” humor helps us remember little things that should bring us happiness. Humor can also help us watch out for depression, if you stop finding things funny you might need to seek counseling.
I use movies and shows to help me practice smiling and keep laughing. If it seems like it has been awhile since I smiled I will turn on a comedy. It is good for your mental and physical health.
How about a funny “sick person” story? A grave side-effect of one of my medicines is fits of rage. And other side-effect of making one crave sugar. I had my first fit of rage a week after starting the medicine. I was living with my sister and her baby while finishing school and had spent the day home with the baby doing homework while she slept. I suddenly had an awful craving for chocolate. I needed it. And we didn’t have any and I was getting angry about it. I had already been craving pure sugar so I thought maybe if I eat a sugar cube I can feel better. My sister had hid the sugar cubes…and the granulated and powdered sugars. What if I was going to make cookies? I started to rage out. If you have never experienced rage, I do not recommend it. Tricia got off work early. I started yelling. It hurt but I did it anyway. How could there be no chocolate? We don’t even have chocolate chips. Did you eat it all? Where is the sugar? Was hiding it really necessary? I went on for like ten minutes before my sister couldn’t hold it in any longer. She broke out laughing hysterically and fell to the ground. She could not stop and it made me mad. She was rolling on the floor laughing. Does she even care I am angry? When she finally stopped laughing she packed up the baby and left, without a word. About twenty minutes later she came back home with two grocery bags of different kinds of chocolate. Still angry, I thanked her and ate a piece and had calmed down a bit. My sister explained she couldn’t tell me where she was going because she was still on the verge laughter. And she started laughing again, laughed so hard she started to cry. I had never been so angry that I yelled at someone before. It just not how I deal with anger. And I was angry about chocolate, of all things. She found the whole thing fun and delightful. Her calm and collected sister had finally lost it and she was hurting herself with her own voice on top of it. Never again were we without chocolate in the apartment. We now laugh about the day she came home and there was no chocolate.