Dark Days

wpid-wp-1423238659414.jpegSo, I’m on day five of an intractable migraine. That means I’ve had no relief from 9-10 pain, nausea, vertigo, insomnia, vomiting, stumbling, crying uncontrollably, and panic attacks for 5 days. I’ve tried ice packs, anti-nausea, anti-anxiety, Tramadol, Vicodin, Zohydro, Toradol oral and injections. And all combinations of those above. Nothing has touched it. That’s 120 hours, 7,200 minutes, and I can’t figure out how many seconds right now because my brain is not working. I’m beyond exhausted, stressed, depressed, and, I’ll admit, scared for myself. I am desperate, out of options, and not sure how much longer I can fight. Giving in and putting a stop to this endless pain sounds wonderful. I’ve been fighting for so long. I’m done. Please donate so I can try this last ditch inpatient treatment in Philadelphia. Go to http://www.youcaring.com/AlwaysKeepFighting to donate. Eery dollar is a blessing and greatly appreciated. Anonymous donations are fine.

I Wish I’d Known

Sarah Hackley, The Migraine Chronicles

http://www.themigrainechronicles.com

Sarah Hackley is an author, poet, bestselling editor, ghostwriter, and writing coach based in the Austin area. She is the author of “Finding Happiness with Migraines: A Do It Yourself Guide” and the Amazon women’s poetry bestseller “The Things We Lose.” She’s also appeared in numerous anthologies and magazines, including the “Women Awakening Anthology,” “The Bridges of America: Homeless Poetry Anthology,” and Creative Nonfiction magazine. “Preparing to Fly,” her finance book for women wishing to leave abusive partners, is scheduled for release in 2015. She is currently at work on her first novel.

An Open Letter to My Pre-Migraine Self #migraine #chronicillness
You are about to go through hell. In more ways than one.

You are going to spend your days in bed, squeezing your eyes together in pain because even the covers hurt. You are going to be too dizzy to stand, too nauseated to eat.

You are going to take pills that prevent you from eating. You are going to take pills that cause you to eat. You are going to lose too much weight. You are going to gain weight. You are going to drink too much. You are not going to be able to drink at all.

You are going to see pink dots circle around each other on your ceiling, pulsing in time to your heartbeat. You are going to experience moments when you feel larger than the houses you are driving past.

You are going to doubt your sanity.

You are going to get shots in the nerves of your neck, and feel more agony than you could have ever imagined.

You are going to lose your confidence in yourself.

You are going to lose yourself.

You are going to get depressed and anxious. You are going to wonder if you can take it, if living like this is worth it.

Let me tell you this: It is.

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Don’t get me wrong; this is going to take time. But, it will happen. Trust me. So, don’t worry about the future. Instead, do me a favor:

Go dancing, all night. To loud, thumping music that makes you throw back your head in laughter and delight.

Stay up until 3 a.m. talking and making love. Do it again the next day. And, the next.

Find out when all your favorite bands will be in town, and go see them. Stand near the front, where the smokers and dancers are, with a large pint of beer in your hand and a smile on your face.

Run, as fast and as far as you want to. Take hours-long walks in the summer sun. Spend all day hiking by the creek, and swimming at Barton Springs.

Take overnight trips to exotic destinations. Carry nothing but a small purse with you.

Eat bowl after bowl of queso, and slice after slice of four-cheese pizza. Eat as much of your favorite foods as you like.

Read all night long, even if you have to get up early to work.

Do these things.

Trust me. Do these things now, while you can, so you can enjoy the memories you make when you can do them no longer.

Little Victories

I cut my thumb the other day! Do I seem excited?! Well, I was! I was slicing a cucumber with one of those mandolin slicers and all of a sudden I felt my thumb go right over the blade. No, I’m not one of those people who get off on pain, I’d be dead by now if I were! But as I watched the blood gushing from my thumb, I felt a kind of satisfaction. My chronic, daily pain is invisible to myself and others. I feel it, can describe it, am sick with it, but it’s not visible. It gives others pause to think, “Is she really hurting THAT badly? Is she faking it? She can’t hurt like that every day!” I am used to playing my pain down when out and about because people honestly don’t want to hear bitching and moaning from others when they have their own issues and I understand that. I really do. So I say “I’m okay.” But when my thumb wouldn’t stop bleeding after 3 hours, I thought it might need a stitch or two. I wrapped it, cleaned the mess I’d left behind, and drove to a “doc in a box.” I walked in and happily explained what I did. The receptionist said, “Oh, you’re really bleeding, aren’t you?!” She probably thought I was insane when I smiled and said “Yes! Yes I am!“ I filled out my forms as others came and went, some stopping to say “that looks like it hurts!” Some looked nauseous when they saw the amount of blood. I think I was still smiling, sick as that sounds. I was taken into an exam room and the doctor came in and said, “Wow, that looks nasty! Does it hurt?” I told her not really, I just couldn’t get the bleeding to stop. She cleaned the wound out, which did hurt, then decided to use DermaBond (think Superglue) and a butterfly bandage. I thanked her, checked out, and left. I went to Target and saw people looking at my bandaged thumb and thought “It’s visible, they see it, they know I’m not imagining it, they know I’m not faking it!” It sounds absolutely ridiculous to the common person, but to anyone with migraines, fibromyalgia, Lupus, depression, anxiety, panic attacks, etc., you understand! The feeling of doubt, fear, embarrassment, shame, guilt for having an invisible illness that makes you have to prove it’s validity. To non-understanding friends, to non-empathetic doctors, nurses, psychiatrists, unfeeling insurance companies, and worst of all, Social Security Disability. SSDI, who will do their best to quash your claims, and try to prove that you’re faking an illness that has taken over your life. Controls every minute of every day, takes away your choices, leaves you an empty shell of who you once were. So, you’ll forgive me if I gloat a bit about my sliced thumb and bandage! I’ll probably even leave it on longer than necessary, but I’ve earned the right dammit! wpid-fb_img_1422635977059.jpg

Painsomnia

Another sleepless night, but brain running on all cylinders. I don’t know if it’s the pain or the exhaustion, but I’m thinking a lot about limitations. So many things I took for granted in my other life (before my medical and emotional condition(s) took over). I could go shopping at the spur of the moment. I could accept a date without worrying about cancelling. I could attend a concert and not be afraid that the noise and lights would be overpowering and I’d need to leave. Something as mundane as a trip to the pharmacy now has to be planned practically down to the minute. What time do I have to take which meds so I’ll be out of pain enough to go, but not too drugged to drive?! I’ve never been good at math or equations. Now I find myself working like a mad scientist trying to take 1/2 of this and a 1/4 of that two hours before leaving the house, or is it three hours?! It’s always hit or miss, as I refuse to drive without feeling alert enough to be safe and not get pulled over. Sometimes the timing works, sometimes it doesn’t. I cancel or miss more appointments than I make. I cancel or bail out on plans last minute, which thrills my few remaining friends to no end. My new life revolves around counting, measuring, timing, planning, and hoping. I hate it! I want to be spontaneous! I want to wake up, see an ad in the paper for an event, and just go! I guess I’ve taken so much for granted that when I lost the ability, it really hit me hard. I feel guilty, angry, sad, and any other number of emotions. None of them good. I want proper treatment, I want a cure, I want people to understand, empathize, at least belive me when I say my pain and suffering is real and debilitating. I want my life back! My biggest fear is that my inner demons will take over. I cannot allow that to happen! But they are so strong and they want to be in charge. It’s a daily fight and it’s exhausting! Severe pain and insomnia don’t help. Neither do depression and anxiety. I’d sell my soul for a pain-free day and a sleep-filled night at this point. Extreme?! Not to me. wpid-wp-1432820269510.jpeg

Nighttime Thoughts

I’m going to be 50 years old in August. I had to re-read that sentence several times. 50?! When the hell did that happen?! I don’t feel 50. Well, not emotionally. I still mentally feel like I’m in my 20’s much of the time. I’ve blocked out a lot of bad times early in my pre-teen and teen years and maybe that’s part of it. I had undiagnosed depression, anxiety, and panic disorder. It took years to find the right Doctor and medication combination to make me able to function. The medication started working almost overnight. My therapy sessions with my psychiatrist took longer. He was amazing! Nothing like previous doctors that said I was lazy, looking for attention, trying to avoid school, etc. Dr. P. understood what was behind my actions and helped me deal with them. He was my hero! I began to feel more positive, more outgoing, willing to take chances, and get a job. I always thought it was just dumb luck that we were brought together, but recently I’m changing my opinion on that. I am a true believer in fate. And I now believe that this doctor and I were destined to meet. I owe him so much. He got me through my darkest times and made me a stronger, better person. I haven’t seen him in about 25 years, but he has left a lasting impression on me. I still hear his voice during pain attacks, telling me to remember my deep breathing exercises. And I do. And they work. Before making major decisions, I try to think what would Dr. P. advise?! Obviously, he will always be with me in some sense, and that alone makes me feel better! Thank you Dr. Phillips! You’re still my hero! http://www.youcaring.com/AlwaysKeepFighting Please help if possible. Thank y’all for your love and support!