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! 💕

So. My depression and anxiety has me in it’s grasp! Just one of my “demons” trying to take control once again. It’s a daily struggle. It would be so easy to give in, to say “screw it”, to just let go. “It” is so strong! I am so weak. The pain is so bad. It’s getting harder and harder to function every day. I feel worthless, useless, tired of fighting, tired of trying, tired of living….. My demon promises peace, quiet, no pain, no stress, no worries….. It sounds so good. Too good. Too good to be true. I have to keep fighting. I am stronger than my depression. I am stronger that my pain. I can choose to push harder, exert myself, stretch my limits. Ignore the negative thoughts and replace them with positive ones. I matter. I am not alone. I can beat this. I’ve been down before and I came back stronger than ever. This is only temporary. This mood will lift. I will find a reason to smile. Even laugh. Life is worth living. If you’re going through hell, keep going. Screw you Demon! I’m in charge today and I want to fight! So back off! Let’s kick it in the ass fellow warriors! Carry on and always keep fighting! 💕

So. Do the constantly changing weather patterns affect your migraines and Fibro symptoms? Yeah. Me too. I live in SE Virginia. The weather here changes by the hour if not more often. It’s been in the 80`s in the Winter and 30`s in the Summer. We have cold fronts, warm fronts, hurricanes, tornadoes, rain, sleet, hail, and snow. And that could all be in the same week! All kidding aside, I am greatly affected by these weather “mood swings.” The pain is greater and the meds can’t keep up. Yesterday it was sunny and 74°. We had a freeze overnight due to a front passing through. Today it is stormy and 47° for a high. I think Earth’s barometer is broken. Or Mother Nature is on vacation. Regardless of reasons, I am suffering. My migraines are constant 9/10 with jackhammers and/or ice picks constructing or renovating something nefarious in my brain. When I take a step, the resounding throbbing makes me nauseated. Vertigo pops in to say, “Hey! Let’s go for a spin!” And the thought of food is bleak at best. So, pain meds on an empty stomach. Yay! On the Fibro side, every past, recent, and future injury, muscle ache, bump, bruise, paper cut, and stubbed toe make their presence known. Aching, burning, stabbing, dull, sharp, steady, tingling. They’re all here. I’ve given up leaving my bed for the past two days unless absolutely necessary. It’s not worth the additional pain to walk into the other room. Stairs aren’t even an option. And driving, I might as well bash my head into the wall and knock myself out. That way, I can’t hurt anyone else. Just laying here in bed, the itching from my pain meds and the tossing and turning from being unable to fall asleep are enough. I’ll fall asleep eventually. For awhile. Until the pain wakes me up. Painsomnia. Such a common problem amongst us chronic pain warriors that it has a name. Aren’t we lucky?! I know this is a flare up due to the weather and will ease up in its own good time. I know that, but still, I’m in pain, exhausted, depressed, in tears, and sick of it! Oh well. This too shall pass. And I’ll get back to my normal daily 7/8 migraine pain level and my occasional horribly painful, non weight-bearing knee one day, hip the next, neck after that, and so on. Anyway, I think I may just be able to fall asleep now. Here’s hoping! And hey, if you run into Mother Nature, please ask if her mood stabilizers have been changed lately. In the meantime, carry on and always keep fighting. Much love!  💕