Lyme Disease

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

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

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

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

Medication shortage
#Babesiosis #Bartonella #Medication #PosturalOrthostaticTachycardiaSyndrome #ADHD #CPTSD ##lifelyme #mycoplasma

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