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    It’s not what the world takes away from you that matters, it’s what you do with what you have left that counts

    Every day we wake up and have a choice...smile (even in the times of most adversity) or let things bring you down until all you can do is frown. Feeling sorry for yourself gets you nowhere, making the most of what you have builds character, confidence and gives us a chance for a reason to smile. Every day I have to make this choice, I pride myself in having a positive attitude and when I find myself focusing on all the things that have brought me down, instead being thankful that I survived it all...but there are some days when I fail...its a lifelong journey and every day that starts with a smile is a success. Some days it takes part of the day of allowing myself to suffer that I then can hopefully shift to remembering that I am thankful for all the blessings I have in my life to be grateful for! I choose to smile today!

    #ChronicPain # #ChronicIllness #physicalpain #peripheralneuropathy #backpain #neckpain #Migraine #chronicvestibularmigrain #ChronicDailyHeadache #Headache #COVID19 #covidlonghaul #Disability #mentalhealthe#SocialAnxiety #Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #Shingles #Bronchitis #Pneumonia #PTSD #Acceptance #Happiness #Selflove #Selfcare #relief #EmotionalHealth #physicalhealth #strength #MightyMinute #IfYouFeelHopeless #Hope #MentalHealthHero #MightyTogether

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    Pacing, Creative Coping and How Small Things can be done in Great Ways.

    My name is Mita. I am a 42-year-old multidisciplinary artist and podcast hostess; a mother and a wife. I focus a lot on Pacing and Creative Coping strategies to get through my days with various chronic conditions.

    Following a whiplash injury in 2015, is when my chronic pain/illness journey started. I’ve been diagnosed with whiplash, fibromyalgia, orthostatic intolerance/dysautonomia, chronic fatigue syndrome, occipital neuralgia and chronic migraines.

    I am in pain every day. Some days my cognitive function is severely hampered due to Brain Fog. And P.E.M (Post-Exertional Malaise) can be a real stick in the wheel.

    My baseline, on a good day, is a headache pain level 2-3, occipital neuralgia at a 2 and fibromyalgia pain level 4-5 (on the ‘In Office Doctor’s Pain Scale’) with migraine attacks every few days.

    Since developing a chemical sensitivity, it makes the pain hard to control, as I cannot take most medications.

    I experience Vertigo, muscle weakness and extreme fatigue on top of all the other crazy symptoms these conditions come with, and I am at a fall/faint risk if I am not careful.

    Late fall, winter and early spring are the roughest months to get through, living in the Midwest as I am. But once the weather stabilizes and becomes warmer and if I have been prudent with my energy supply during the winter, then I can find myself living it up a little more during summer which is invigorating for the soul.

    So, I am limited. Physically. This is my reality. I only have so much energy to go around and every day I need to pick and choose what I spend it on. I always have to keep in mind that I cannot overdraw my account. I need to balance my ‘checkbook’, if you will, to make sure I do not go down to zero, because I may not have enough to go around for the next day, or even the next couple of weeks if I do. But with Pacing I can lead a somewhat decent life.

    ME-pedia describes Pacing as such: “…an activity management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible…”

    (Obviously, I am not perfect at Pacing as I find myself doing too much on occasions, due to getting impatient with my limitations. Overall, I’d say I do pretty well with it though.)

    So, what do I choose to spend it on?  Well, some mundane tasks need to be done, like laundry or light cleaning, so I spread it out over a few days. I work within my boundaries which I have somewhat figured out via trial and error. This is part of Pacing. Ups and downs til you figure what You can handle.

    I am a very lucky gal to have an extremely supportive husband and three children that help me with some of the heavier chores. The house would be in utter chaos if this was not the case.

    When the mundane, pragmatic things have been taken care of, I choose to use my energy on the activities that fill me with contentment, keeps my anxiety levels down and overall contributes to a better state of mind. Whether they are Creative Coping Strategies, like painting, drawing, forest bathing, expressive writing, or just being with my family in the moment, or listening/making music (the latter depends fully on headache pain levels and brain fog but within my capacity, music will always have a part in my life).

    I am also half of a duo in a podcast we have named Creative Copes where we talk about these exact things – A labor of love for ourselves and what we hope becomes an aid to others in similar situations. I save some extra energy for research and general podcast prep so I can co-host it, because the idealistic compassionate part of myself wants desperately for other people to feel less alone: a constant state of mind when stuck at home, in a body that does not compute anymore.

    This is what I spend my energy on. Things that matter to me; that settle my body and mind and make my heart soar.

    I am not all knowing and cannot be worldly with how limited I am: I am clearly not meant to be a main figure in changing the world!

    But I can do Small Things in a Great Way, for myself, my family and others, and hopefully someone can feel less alone because of my story and be more inspired to get up each morning and meet the day head on. Love and light ❤️

    I can be found on Instagram handle MitaMu.Art and/or Creative.Copes

    www.instagram.com/creative.copes

    14 reactions 2 comments
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    Another update #ChronicFatigue #Fibromyalgia #Costochondritis #Fainting

    I went to the ER last Friday. I fainted twice Thursday night, probably hit my head on the heater and it was also vinyl hardwood. Roommate said the fridge was pulled out, I was trying to get a drink. When I sat up, the trash can was pushed back a couple feet. The ER did a CT scan, it was clean. All tests were. I got Tylenol and an Ativan because I was scared with the CT scan and hospitals are extremely triggering. They did prescribe anything. They did not look at that back of my head even though it hurt like hell. They didn't even check my eyes. The headache only let up yesterday. I know this may be POTS or something. They want me to wear a heart monitor as well.
    Monday, the doctors appointment was telehealth and I don't drive and the local disability bus is having more delays and with how sick I've been it's impossible. She refused to listen tho. She refused to listen about what wasn't working. She told me to go back to the ED. I said something similar to this: I seriously was debating ending my life due to pain and the treatment I've been receiving. Got cut off here and was told: are you threatening suicide? I will call the cops.
    I said no. I'm safe. I have a lot of things going on. She also didn't mention any of the ED notes or anything I told the nurse, the appointment was about 5min.
    My psychiatrists medical assistant was confused as to how that was a threat. I also fired my counselor yesterday due to him on Monday flat out ignoring a trigger then saying he only does 12 sessions but gave me more. Sunday had stuff happen too but I don't want to get into it.
    It's been trainwreck after trainwreck going on two weeks now. Mom, dad and brother also have covid. I don't live with them or am near them.
    #SuicidalIdeation #SuicidalThoughts #MajorDepression #ChronicAnxiety #CPTSD #Autism #ChronicPain #help #PanicDisorder #MedicalTrauma

    9 reactions 1 comment
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    Need some prayer for this pain to go away.

    Weather is really giving me nerve pain and a headache could really use some prayer 🙌❤️☹️

    2 reactions 2 comments
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    Having people that listen and respect us is so helpful and encouraging, so much better than having people who judge, or try to fix us!

    I am blessed to have people in my life that are there for me, sometimes just listening and asking what they can do for me, telling me that I’m not alone, letting me know they’ll be there for me, and they love me … but what can really help us feel better about ourselves is when they just say they’re proud of us. Wonderful people in our lives can regularly remind us about everything we’re going through and how amazingly well we are handling ourselves. They can acknowledge us for what we ARE doing even when we can only see and judge ourselves for the things we’re NOT doing. Sometimes they can be there just to listen to us, sometimes they can help us get our minds off all we’re going through by lightening up the conversation and not allow us to get caught in a loop of feeling sorry for ourselves.

    But we definitely can’t do this alone, things can appear insurmountable or overwhelming but if we’re lucky we have people who believe in us and are there for us when we just need them to listen and let us get our fears out in the open and talk about our pain. People can help us if they just say they feel for us and wish they could make us feel better. What I don’t think they realize is that by simply being there to walk by our side they ARE making us feel better!

    You can expand your network of support by getting up the courage and then tell people that are close to you (that don’t already know) what you are dealing with, sharing what is really happening and what you are going through and then tell them how they can help. I have found most people want to help and if they decline I try not to take it personally. It’s worth the risk to get crucial support

    #ChronicPain #ChronicIllness #PeripheralNeuropathy #Migraine #Headache #COVID19 #Disability #MentalHealth #Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #Shingles #Bronchitis #Pneumonia #PTSD #Selflove #Selfcare #strength #MightyMinute #IfYouFeelHopeless #Hope #MentalHealthHero #MightyTogether

    109 reactions 21 comments
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    What are you grateful for? What can you be thankful for to keep you holding on during tough times?

    Please let's all share our blessings in life that we are thankful for. In
    dark and trying times (like right now), I try to always remember the things I am grateful for and remind myself that without any/all of them my life could be much less manageable

    I am grateful for:

    -Being alive!
    -Being able to walk, even if I need mobility devices
    -Having a roof over my head
    -Having food on the table
    -Having great doctors, nurses, my therapist, my shrink, numerous specialists and my clinic - and having the insurance to pay for them - as well as insurance to pay for my many medications!
    -Having a strong network of family and friends and always being able to know that I am loved and supported ...and
    -Having my relative health - things could always be worse!

    What are you thankful for?

    Maybe thank someone who you are grateful for and let them know how helpful they are and how much it means to you to have their support. Sometimes people don’t know how much they impact other’s lives!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #Stigma #BipolarDepression
    #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #MyalgicEncephalomyelitis #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deaf #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #TheMighty #MightyMinute #MightyTogether #DistractMe #MightyTogether #mentalhealthwarrior #RareDisease #ChronicFatigue

    23 reactions 8 comments
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    Deja vu or anxiety with stress I am loop that me miserable

    I was experience deja vu or anxiety I don't know everything I doing daily basis recently I getting future visions of accidents of my dog missing on while going walking I am shut down while my dog running away and route I walk with him I experience like I seen this before and little visions with blur and more about my next depression hell visions.And having daily headache or tension headaches and rumination and dissociation and imagination arugement and self negative talk few I don't absorb and sleep disturb between middle of night. Please help ,this was more like painful or self gaslight myself if I don't know what happening.

    5 reactions 2 comments
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    Todays pain.

    #CRPS ...I actually had a great morning. Sun was out, arm felt pretty good, pain was low (for me that is!), and hubby is home! Around 2:30...it all went to hell. Not unexpected because I'm dealing with 2 newish things. 1. Occipital headaches on left side. Doing PT and scheduled to try trigger point injections. Very hopeful. 2. Mr crps wrist,right of course, will no liner lay flat when i put hand flat. Feels like its twisting. Ortho won't see me...great. pain doc and I communicated and referred me to my primary with a scan on it to be done. I have primary appointment in a week. I'm thinking its time for rhuematologist???? The fear of losing total use of wrist is overwhelming. Yes, i am aware it could happen. I have been working hard on keeping the arm lose and flexible. I know I am losing that battle. Then I picked up something kitty knocked over..not smart as it was heavier than I can handle. Now the pain is over top, headache kicked with pain. I'm curled up in my cocoon of blankets trying to be warm. Nightly ritual. I'm overwhelmed, hurting and tired. Too much to think about. Know tomorrow will be better...here's hoping. Thanks for listening/reading. Needed a safe place to spill this out. God love ya all!

    2 reactions 2 comments