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    Becoming a grandmother

    I thought becoming a grandmother would be the most exciting thing in the world. Instead it’s made me extremely depressed because I don’t get to see him. I don’t even get a FaceTime with him. My heart is broken by the way I was treated after he was born. It was during the pandemic. I found out later her Mother was able to hold him. I was not able to hold him until he was 8 weeks old and I had to wear a hazmat suit. Her mother did not. She was able to hold him from day one. My husband and I are a lot older than her parents and we are not as well off financially. My son aloud this to happen and did nothing to stop it. I do not feel anything anymore. I have a brain injury that has gotten worse due to the depression and hurt I suffer with everyday. I don’t feel like a grandmother nor am I treated as one. On my birthday this past October I got a call from both my sons thats it. I waited for a FaceTime from my grandson that never came. I was devastated. They live close by it’s not like it’s out of state. We are not aloud to babysit him. We have offered and they make an excuse. Christmas with Santa Claus not us. Easter bunny not us. Valentine’s Day came and I finally had to say I had a gift and it would not reach him in time. She told me they would plan sometime to come out. They stopped in for 90 minutes sat and looked at their phones. He got his gift and they left. Everytime they leave I am crying and depressed. I hurt my back lifting him to get the mail. I’m still trying to heal my back. That was the last time we have seen or heard from them. We don’t seem to matter to them. I wanted to do something with Santa last year. My son says make it happen!!! I don’t know what he means by that. Then I see they took the train ride with Santa and we were not asked to come along. So if they already did it then why tell us to make it happen. I really have nothing to live for anymore. It’s getting worse and my son is now a stranger to me. The only way to protect my heart from more damage is to pull away. I really don’t know what else to do. I’m not rich Lyme disease took all my money. These last 3 years have been a living hell. Lost my mother , my brother and 6 others to suicide. Plus 22 more. I can’t even work anymore on line.
    #brokenheart
    #Depression
    #BrainInjury
    #Hoarding
    #LossOfAParent
    #PTSD
    #LymeDisease
    #RareDisease
    #AutoimmuneDisease
    #AutonomicDysfunction
    #dyautomia
    #Isolation
    #PudendalNeuralgia
    #suicidalprevention
    #EmotionalHealth
    #AcuteStressDisorder
    #livingwithabuse
    #ADHD
    #KidneyDisease
    #dentalpain
    #Anxiety
    #PanicAttacks
    #Trauma
    #venting

    5 reactions
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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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    Surviving is just part of the journey…making the most of the time it gives you and realizing there can be good times despite the struggles is a gift!

    It’s not all about survival, there is a lot of living to do along the way. Although at times I feel like I am just treating one ailment after another, all day every day (which is true right now) I’ve decided why take all the time and energy it takes to survive everything unless I don’t enjoy how the time given to me by surviving is ripe for good times too.

    Recently I have mostly been homebound except to go to health appointments… doctors, PT & OT, clinics, therapy etc. and then only with a walker and the benefit of handicapped parking spots. But I try to continue to celebrate the gifts I have in life, be thankful for the blessings I have that make life just a little more bearable and remind myself of what I’ve been through, how I’ve survived and what I’ve learned from these experiences. If I consider all this, then I must be a very wise man 😉 I may have dropped out of college but I have a Masters degree from the School of Hard Knocks … the diploma is not needed, I know I have accomplished it and need no reminder…I’m still alive after all!

    Tough times have given me the chance to tap into my inner strength and I’ve also grown along the way. I don’t have to wait to celebrate the good times when I am experiencing some right now despite what I’m going through!

    Thank you all for the love, support, thoughts and prayers, I certainly couldn’t have done this alone!

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

    37 reactions 8 comments
    Post

    When you feel like you and your health hold your loved ones back in life.

    Every day we deal with a heap of grieve, shame and guilt.

    We greatly appreciate our loved ones and partners. We truly do understand that our health isn't just hard for us to digest, process and accept but it is equally hard for them. They don't want to see their loved one in pain every day, struggling and going through treatment after treatment. It's emotionally heart breaking.

    We feel like half the time we are a burden, as they press pause on their life to be there for us. This can be really hard on our self esteem and self worth as the guilt becomes overwhelming.

    Yes we want support and are so thankful for all the support we have.

    But we don't want our loved ones looking back with regret if they missed events, moments, adventures and opportunities to be there for us.

    We want them to live as normal life as possible and enjoy life as they deserve too.

    I know so many of our loved ones will tell us on a daily basis that our health is their top priority and they don't see it as a burden to them to look after, support and love us. This can sometimes make us feel guilty for feeling this way and questioning their support, but I think it's total natural to feel guilt and have that worry about their life in the back of our minds.

    For me.. I've always said to friends and family LIVE, live double for me and you. Do everything you want to, can do and dream of doing.

    Because it actually brings a smile to my face when I see them living and having fun. It weirdly gives me hope for life and that life can be beautiful and bring happiness along the journey.

    Life really is rough and tough, it's not always kind and when you are battling a chronic or mental illness you do feel like you are living in a black hole! You can't see the end of the suffer or a light at the end of the tunnel. But it is SO important to keep hope in our hearts and have the love that we have around us to keep fighting but also love enables to see the glimmers of hope, it helps us feel a touch of happiness and love I truly do believe helps us break out of our comfort zones.

    So what can we do to help relieve our guilt over our loved ones?

    My advice would be to communicate.

    Share how you are feeling in regards to the guilt about them not being able to live and you feeling like a burden.

    But honest and open about you not wanting them to look back with regrets.

    Air it all out and for sure they will gain a deeper understanding into where you are coming from and will be able to explain their side, which should but you at great ease.

    But communication is really at the core.

    Nobody ( although we would love to) can mind read.

    As humans anyway we go through a range of emotions, thoughts and feelings minute by minute so that is why it's important to have regular chats and check in's.

    The first chat you will have will always be the toughest but it does get easier as you build your confidence up and also feel more at ease. It can also help massively strengthen relationships too.

    Have any of you felt guilt about your loved ones or partner not living out their life dreams because they are supporting you and your health journey?

    #ChronicIllness #ChronicPain #LymeDisease #Relationships #MentalHealth #chronicillnesslife #Trauma #Communication #Support #healthsupport #chronicillnesssupport #spoonielife

    5 reactions 1 comment
    Post

    To Stay

    Arduous.

    Furious.

    Heart hammering, face flushed with fever

    Livid at this body that isn’t living or dying either

    Body so frail

    Yet refuses to fail

    Life is a flower, mine is withered but won’t fall

    Life is a breath, mine is shallow but won’t stall

    This is not living, this is barely surviving

    More like treading, less like thriving

    Dreading the drudgery of dragging my feet through each day

    Stumbling through sand, wading through endless waves

    His path through the water, His footprints unseen

    His plan a mystery, makes it so hard to believe

    How can this be for my good, for Your glory?

    My impact so small, so feeble, so poor

    Show me the worth I can find in this day

    Show me enough that I will want to stay

    #ChronicIllness #LymeDisease #MightyPoets

    20 reactions 8 comments
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    Fear of Hope

    Longing and terror wrestling within

    Tangle of dreams and demons to restrain or abandon

    Power to end, powerless to begin

    Future too far, too grim

    Control, the dark force she desires

    Hope’s horizon too hazy to hold

    Tame the flame or fall prey to wildfire

    As time slowly smolders the yearning inside her

    Live in fear, or fearful decide

    Dread her private vast ocean to tread

    Turn to trust? How can she reside

    In this wilderness so rugged, so wide?

    Trust’s embrace carefully cradles her hands,

    “Formed fists deny disease and growth both.”

    Love lingers, lifts up her frail plans

    Guards her heart without harsh reprimand

    Hollow hands held heavenward to receive

    What He wills, desert or door, cypress or thorn

    Barren fields, blaze-razed, wait for trees

    Here on earth or eternally

    Story behind the picture: I was writing this poem and processing how much I don't want "hope" to be the answer (because it's easier/safer to not hope sometimes) when my young niece gave me this valentine card that she made special for me--no idea that it was exactly what I needed to hear!

    #ChronicIllness #LymeDisease #MightyPoets

    12 reactions 2 comments
    Post

    Fear of Hope

    When you live with chronic illness, hope can be a double-edged sword. My husband and I have Lyme Disease and have had seasons of hope that led to seasons of despair. Sometimes it feels safer or easier to not hope at all. I can’t be disappointed if I was never expecting anything, right? But even though hope can harm, a life without it is not the answer. I was recently processing the balance between control and hope and wrote this poem. If it resonates with you, I hope you can find the courage to hope, even in the midst of seemingly hopeless situations.

    Fear of Hope

    Longing and terror wrestling within

    Tangle of dreams and demons to restrain or abandon

    Power to end, powerless to begin

    Future too far, too grim

    Control, the dark force she desires

    Hope’s horizon too hazy to hold

    Tame the flame or fall prey to wildfire

    As time slowly smolders the yearning inside her

    Live in fear, or fearful decide

    Dread her private vast ocean to tread

    Turn to trust? How can she reside

    In this wilderness so rugged, so wide?

    Trust’s embrace carefully cradles her hands,

    “Formed fists deny disease and growth both.”

    Love lingers, lifts up her frail plans

    Guards her heart without harsh reprimand

    Hollow hands held heavenward to receive

    What He wills, desert or door, cypress or thorn

    Barren fields, blaze-razed, wait for trees

    Here on earth or eternally

    Mighty Poets

    3 reactions
    Post

    Electrolytes Easy for GI symptoms

    Does anyone have any suggestions on electrolytes that are easy to digest or good for digestion issues? I have POTS and Mast Cell Activation Syndrome and some pretty severe GI problems currently. They stopped making the only flavor of Body Armor that I could drink without reacting. Maybe people with #IrritableBowelSyndromeIBS #InflammatoryBowelDiseaseIBD #CrohnsDisease #UlcerativeColitis #Gastroparesis have some things that have worked for them?

    #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MastCellActivationDisorder #MastCellDisease #Migraine #Depression #Anxiety #Autism

    9 reactions 4 comments