So. Sitting here, unable to sleep as usual, at 4 am on a Sunday. I’ve been following the horrific breaking news out of Orlando since 2:00. As the tears fall for the innocent victims and their families and friends, I can’t help but be grateful for what I have. Despite my multiple chronic illnesses, I am alive. I have my Mom (my biggest supporter and my rock), my emotional support furbaby Samantha (my 4-legged therapist), my few, but loyal friends (forever positive and always understanding), and my incredibly empathetic and caring online support system (without whose friendship I couldn’t even begin to get through this chapter of my life). I finally have some financial support from Disability benefits and can basically support myself while being unable to work. I have caring, empathetic doctors (finally! side note: fellow chronic pain warriors, don’t give up the search! They are difficult to find, but they DO exist!) to help me navigate the world of chronic pain and depression and hopefully together we will find effective treatment, if not a cure. I have medical insurance to help with cost of treatments, visits, and prescriptions. I have so much more than many others and am hugely grateful for all of it! I am able to walk, talk, see, hear, speak, think, and dream. Many aren’t. As my ever wise Mom has always said, “If everyone were to put their problems in a basket, they’d pull their own back out.” Stay strong fellow warriors! Fight for what you believe in! Be the change that you want to see in the world! My thoughts are with the victims, friends, and families of the horror in Orlando. #LoveIsLove #AlwaysKeepFighting 💕

So. I started a new preventive medication on Monday night. It’s supposed to help with migraine and insomnia. And love and behold, I slept a full eight hours Monday night! First time in months that I’ve gotten more than 3 or 4 hours of sleep in a row. To say I was thrilled would be putting it mildly. I was dizzy the next day and a bit hungover, but all in all, manageable. I took it again on Tuesday night with extremely high hopes. Unfortunately, I only slept for 4 hours and was awakened by the worst nightmare that I’ve ever experienced. I couldn’t even think about going back to sleep. I’m not too dizzy as I’m typing this, so hopefully that was just a temporary side effect. We’ll see as the day progresses. I’m not counting this med as a fail this soon. I’ve given up too early in the past on other meds and want to give this one a fair chance. It’s an older medication and, according to my doctor, well tolerated and effective. The nightmare has me terrified as I remember it clearly (I usually don’t!) and I really don’t want a repeat performance! I’m taking the med again tonight and am trying to avoid preconceived notions about the outcome. I started with the lowest dose and have a lot of room for trial and error. I am determined to find a preventive that works for me as I refuse to live out the entirety of my life on pain meds. I’m going into this in a positive frame of mind and with the projection of success. I’ll keep you posted. Stay strong fellow warriors! Carry on and always keep fighting! 

So. As I sit here on a rainy, windy, stormy Memorial day, I started thinking about migraine triggers. I never really gave them much thought. Once diagnosed with chronic daily migraines, I stayed away from certain foods and ingredients (red wine, aged cheese, nitrites, and sulfates) as a rule. I stopped using artificial sweeteners, and avoided excess caffeine and chocolate. I will never give the last two things up completely! Life is too short! I have had horrific allergies since moving South and take meds and weekly shots for them. I know to shut my bedroom window at night and go out early in the morning before pollen is too bad. I brush my emotional support cat Samantha several times daily to keep her dander down. Plus she loves it! 😼 I am extremely sensitive to bright light and loud noises. I wear my sunglasses indoors when needed and outdoors in all weather to cut glare. I wear a hat occasionally, but not a big fan. When the landscapers come around and I’m home, I wear noise-cancelling headphones to block them out. I carry earplugs in my purse. I try to plan for any and all situations, but unfortunately cannot predict them all. The random thunderclap, car alarm, loud PA system announcement, etc. make me jump like I’ve been shot. Smells are more difficult to control. A sniff of someone’s perfume can send me reeling. (Tip: eucalyptus oil rubbed under the nose before entering a space does block to some extent) A good day (4-5 pain level) can be ruined by just walking by the detergent or spice aisle. I do try to eat regular balanced meals at the same time daily, but depending on pain and nausea, cannot always do so. I realize how important regular, restive sleep is for my physical and emotional health. I have chronic insomnia so that is often not possible. I try to exercise, take walks, but pain and exhaustion hold me back. I often experience worsening pain after light exercise. There is nothing to be done for what I’ve found is my worst trigger. Barometric pressure. Cold fronts, warm fronts, storms, any change at all leaves me stuck at home, usually in bed, in the dark and quiet. It’s no wonder I get depressed and anxious when faced with leaving the house. I have no control out in the world. I am constantly bombarded by light, sound, weather, and smells that paralyze me and send me running for home. My safe place. The only place I feel somewhat in charge of my own life. Such as it is. But I know I can’t stay in forever. I’m already watching my life pass me by and unable to be an active participant. I push! I do! I go out when I should be home. Because in the back of my mind is always the idea that if I don’t, I’ll wind up unable to leave my house. I will avoid that at all costs! The disease and the struggle are real. But I will prevail. I must! #AlwaysKeepFighting 💕

So. I’m feeling positive and hopeful for the first time in what seems like forever. For a simple, seemingly ridiculous reason. I saw my new internist a few days ago. I had heard good things, but, as I do, I worried they weren’t true. Dr. F. was amazing. Let me give you a comparison and you’ll understand better why I was concerned. My previous GP in a few words; condescending, contentious, maligning, dismissive, hurried, lecturing, negative. My new doc: respectful, agreeable, empathetic, concerned, caring, patient, positive. A world of difference! Why did I stay with my previous doc for so long? A few words about myself since I became chronically ill: too trusting, passive, scared of change, depressed, low self esteem, etc. I’m working on that! Hard! The “me before illness” (MBI) would never have allowed myself to be disrespected, talked down at, accused of exaggeration of symptoms, told to “get off my butt and get a job!“ (YES!, he actually said that!), and that “it’s just a headache!” I was concerned that I wouldn’t find another doctor, or at least one who understood migraines, fibromyalgia, chronic pain and it’s comorbidities. I was deeply depressed and in constant pain, not thinking clearly, or I would have told him where to shove his stethoscope! Anyway, he’s in the past and I’m trying my best to look forward, not back.

My new doc listened, asked intelligent questions, took detailed notes, called for my records from my other provider’s while I was with him, and looked me in the eye. This is everything to me! After being made to feel like less than a person by Dr. Lechter (not his real name, but should be!), having this doc’s full attention, with no sense of urgency, was mind blowing! I left the office after spending an hour and a half with the doctor in the exam room. I had a thorough, hands-on exam, five vials of blood drawn, an ECG, urinalysis, orders for a sleep study, info on the new fibromyalgia blood test, and a return appointment in two weeks. Also a handshake and a smile. I almost cried from relief. I smiled the entire ride home! I’m just sorry that I waited so long. But, again, looking ahead, not back! 

So. If any of y’all are in the same boat, stagnant and not happy with a healthcare provider, please, please look for someone else! The good ones ARE out there! And it’s well worth the search! Stay strong and positive fellow warriors! #AlwaysKeepFighting 💕

So. It’s ironic how I am always telling others to put themselves first and that self care is not self indulgent. But myself? Not so much. I have fallen into a dangerous rut. The chronic pain/insomnia cycle. I am pretty much in some level of pain and exhaustion all of the time. My meds make me tired and loopy. The insomnia has me near delirious almost daily. I’m floating in a haze for the most part. I’m not able to exercise and I’m eating sporadically and not healthily. I’m not an active participant in my own life. The days blend into nights and I’m often unaware of the passing of time. I’m too tired and in pain to care. I don’t often leave the house unless absolutely necessary. This makes my depression and anxiety skyrocket. All of these issues combine to set myself up for disaster.

So. Ive had it. I refuse to sit by and watch my life go by without me. I’ve got an appointment with a new internist on Wednesday. I have a huge list for him of questions and concerns. I realized that except for emergency situations, I haven’t been monitered for any possible health conditions. I know, as a medical professional myself, that so many simple issues could be making my health even worse. Thyroid, vitamin D, anemia, diabetes, high cholesterol, etc. Simple fixes with medication. Any or all of these could be making my chronic migraines and fibromyalgia even worse. I know that mentally I’ll feel better knowing that all else is well. I’ll keep you updated.

I’m actively seeking a new therapist. My depression and anxiety go hand in hand with the migraines and fibro. One feeds off of the other. And to treat one and leave the other up in the air is stupid and dangerous. I know I need someone to talk to about this mess. Someone impartial. To bounce thoughts off of and to just let out my frustration and guilt. I’m on an antidepressant and an anxiety med, but without being monitored, I’m not sure if they’re the best choice. I’ve pretty much been “self-medicating” for many years. I hope to find someone compatible and just pushy enough to keep me on the right track.

My diet is a big issue for me. Since all of this began about five years ago, I’ve gained a lot of weight. Much more than I will ever be comfortable with. This too is a contributing factor in my general health and well being. I know I have to do this myself. I have no willpower whatsoever when it comes to sweets. (extreme chocoholic!) So this will be my biggest challenge yet. And most difficult to sustain. I’m cleaning out the kitchen of the “bad” stuff and stocking with healthier options. Please send me positive thoughts on this venture as I’ll need all the help I can get!

Lastly, for now, I have to change my internal monologue. I need to affirm my plans and goals daily. I need to learn how to put myself first. I won’t be able to help anyone else if I don’t take care of me. I have many guilt and self-esteem issues to work on. I’m not the same person I was before this all began. I have to realize I may never see her again and come to terms with the new me. She won’t be any less than the previous model, just changed. Hopefully for the better. 😊

Stay strong fellow warriors and best of luck on your own journey. I’ll keep you in my heart and in my thoughts. Carry on.

So. I’m trying to stay positive. My pain level is on average a daily 6-7. Spikes take it to a 10+. None of my current meds are making much of a difference. Relaxation techniques aren’t working. I don’t sleep much. I sleep in sporadic increments during the day due to not sleeping at night. When I do sleep at night, I am plagued by nightmares, night sweats, night terrors, and panic attacks. I used to look forward to going to bed at night. My room. My safe haven. I would watch TV for a bit or read or blog. Then, as I got tired, in the peaceful darkness, I’d drift off, hoping for good, positive dreams. Now, I am anxious as night approaches. Worried if I’ll sleep. Asking myself if I really want to fall asleep. Scared of what my mind will show me, with no escape, until I am jolted abruptly into waking. Sometimes I’m crying. Sometimes close to a panic attack. Some dreams remembered, others not. But knowing they were not pleasant. (Obviously!) Due to the sweat soaked sheets and the pounding of my heart. I feel safer during the day so I tend to nap longer. Usually dream-free. But now my days are my nights and my nights are my days. I’m physically and mentally exhausted. It’s becoming more and more difficult to function in my daily life. People don’t understand. They cannot. My illnesses are invisible. If only they could see and feel what I do. I see the pain in my eyes. I’m aware of the scarceness of smiles and laughter that used to be normal for me. I’ve become someone else. Someone I don’t like and never imagined I’d be. But I fight. I push. And I struggle. Sometimes I’m successful, other times I’m not. There’s a constant battle in my head. What should I do?! Between the exhaustion and the sedative and side effects of my meds, driving can be scary. Do I risk it?! I have places to go and appointments to keep. The inability to do so only fuels my depression. Most days I don’t want to leave my house. But I fear if I don’t, I may lose the ability. It’s a vicious cycle, I know. But how to break the cycle, repair and take back control of my life… I’m not so sure. Better days ahead fellow warriors. Carry on.

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As a chronic migraine and fibro sufferer, I am wracked with guilt daily, hourly, every waking minute. I am unable to do 95% of the things I used to do before my life was turned inside out. I am in near constant pain every day. I am dependant on my meds, side effects, symptoms, and pain level to do more than get out of bed some days. If I get up, can I shower? Or will the simple act of standing under the spray cause agony? Some days I’ll shower and get dressed and be ready to go out, then the pain cranks up. Or the nausea. Or the vertigo. Or all of the above. At this point, it’s all I can do to crawl back into bed. Curl up in a blanket in my dark room and cry myself to sleep. Unless the insomnia visits. My best laid plans are at the mercy of my body. This person is not me. Anyone who has known me for more than five years can’t possibly understand who I’ve become. I try to explain to family and friends how I really don’t know until each day starts if I’ll be an active participant in my own life or just an observer. They say they understand, but I feel like I am constantly letting them down. I don’t dare book flights or buy tickets to events for fear of not being able to attend. I’m not lazy and I do push myself to and sometimes past my limits to get things done. But it’s not always possible. I feel helpless. And dependent. And alone. And I’ve become my worst nightmare. My biggest fear is losing everyone who I care about because eventually they won’t be able to, or want to, keep being disappointed and letdown. The guilt eats away at me. Some say it’s not my fault, and rationally I get that. But I look inward and think, “I should have pushed harder!“ “I’m stronger than my illness!” “I can beat this!” But with the constant pain and depression, I  begin to doubt that it’s possible. I lose hope. I lose more of myself. And I’m scared.

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I am your worst nightmare! I am a bully! And I’m proud of it! You try to fight me. I laugh at your efforts. I live to control you, overpower you. I love to bring you down to your lowest point ever just to see you completely and wholly submit to my will! I get all kinds of joy from watching you curl up and sob uncontrollably. Your pain is my pleasure. It’s my greatest joy to see you cowering in fear. There’s even a word for it. Schadenfreude. Getting off on other’s misfortune and pain. I am your puppet master. I pull your strings and you dance. I can lurk around the corner and let you think I’m not around and then attack out of nowhere. Watching you fall to your knees in utter defeat. I can go away for a few days and imagine your sighs of relief. Your small, cautious smile. Your hope against hope that I might have finally left you alone for good and moved on. That’s my favorite time to blindside you. Completely and utterly knock you off of your feet. I own you and you are mine to do what I will with you. Whenever and wherever I choose. You can’t escape me. Ever. I’m stronger than you will ever be and you cannot defeat me. I’m your worst demon! I’m in your mind, body, and soul. I’m in your head. Literally. And I’ll be with you until you find a way to defeat me. I am your migraine.

So. I am between psychologists at the moment. I didn’t think I really needed to talk to anyone regularly. I know that my depression and anxiety is situational and comorbid to my chronic migraines and Fibromyalgia. Or, in normal speak, I’m sad and scared. I take meds for this and thought that was enough. I went for over four years with these illnesses without professional counseling. It wasn’t until I began going that I realized how many emotions were swimming around in my head. At my first visit, I was bawling like a baby fifteen minutes into the session. Crying like that may be healing and cathartic, but it’s hell on a migraine sufferer. As I told my tale of chronic pain, doctors, tests, failed medications and treatments, insomnia, and the ensuing depression and stress, I realized how much I had been holding in. I hadn’t really spoken in depth to my Mom because I didn’t want to upset her. My friends had been dropping off due to cancelled plans and other unknown reasons. So I really hadn’t opened up to anyone to this extent in a long time or at all really. The therapist listened, let me ramble on and cry some more. Then she talked about how normal my feelings were due to my circumstances. How anyone would be depressed, even with meds, if they were in near constant pain, not sleeping, and not knowing how to handle it all. The relief at having someone, who didn’t know me from Adam, validate my pain and suffering was overwhelming. I didn’t think I needed to hear these things from an outside perspective, but obviously I did. She reinforced that I was not alone in my feelings. That my pain was real. That my depression and anxiety were warranted. So many things in my life were out of my control, and I was lost. I had been so overwhelmed with fear about my inability to work, my finances (or lack thereof), not finding a working treatment for my pain, etc. As a result, I couldn’t sleep, I was crying uncontrollably, my depression increased, and my hope was gone. My therapist gave me exercises to relieve stress, biofeedback techniques, tips to put in motion a workable plan to get help from Social Services and other resources. The most crucial thing I took away from my sessions was to stop thinking in worst case scenario mindset. To have a plan B if A failed, and a plan C if B failed and so on. I am currently looking for a new therapist due to distance problems. I know I need the advice, ideas, input from a professional. I’m not ashamed to admit it either. My hope for my fellow chronic pain warriors is that you aren’t either. Carry on and always keep fighting! 💕