Mentally checked out.
Hardly keeping up.
Running myself into the ground day in day out.
These last two years have been tough.
Trying not being on autopilot all the time .
Not feeling like I’m living, just going through the motions .
Am I happy ? Am I not ?
#MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction
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Hi, my name is Zebritis. I'm here because I want real answers.
#MightyTogether #Dysautonomia #AuditoryProcessingDisorder #Anxiety #HemiplegicMigraine #Epilepsy #MixedConnectiveTissueDiseaseMCTD
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Hi, my name is LoveroftheWorld. I'm here because I love reading and writing about life with chronic illness.
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5 comments
Feeling forgotten by friends and loved ones. Some new stepping up to the plate.
Life is so weird like that. We know we will pass through chapters and stages throughout life some coming and some going .
Just can’t wrap my head around just poof “bye” as soon as i am not readily available at everyone’s request.
I still overly push myself which I know is at times doing more harm than good for my body but I need to push for the sanity of my mind.
Even before i became unexpectedly ill I’ve felt like people just would use me and toss me when i was no longer of use. Now I just feel like this happens even quicker .
Just scattered thoughts . Has anyone else noticed how people act around them has changed ?
#MentalHealth #Depression #AutonomicDysfunction #POTS #RaynaudsPhenomenon #RheumatoidArthritis #MixedConnectiveTissueDiseaseMCTD
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12 comments
Hi, my name is Quay. I'm here because
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Needless to say nothings really changed for the better . Not necessarily the worst either.
I started embrel for my arthritis and I’m really not sure how I feel about it but I really don’t want to get back on prednisone . Equally aren’t the greatest. “Do the pros out way the cons . “
Therapy has been going good it’s kinda nice just to be able to talk to someone who’s not only studied it but lived with trauma as well and acts on her own suggestions for herself. Example: breathing exercises, does it on perineal tone / with clients to help / and recommends it .
Personal life feel like a rock stuck on the side of a river . Watching as life goes by .
Medical sometime I feel stronger most the time I feel weaker . Some days are better than others but over all auto pilot and suck. Between one condition flaring up another etc etc .
I’m having a hard time taking my medicine . It’s just like my brain is like “NO”. Squirrel and I get side tracked and don’t remember to do it . Even logging medical symptoms is tedious and just don’t have the will.
I’ve missed you old friends
#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #Depression #Anxiety #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis
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Both my kids are persevering with multiple serious medical problems. I’m a single mom with very limited family, friend and community support. I’ve nearly died three times this year and 1-2 times every year for the past six years. My kids are very depressed about almost losing me again. My kids both have treatment resistant depression, CPTSD, endometriosis/ademomyosis,
rheumatoid arthritis, Crohn’s, epilepsy, polymigratory arthritis, degenerative spine disease, scoliosis, reynaud’s syndrome, cardiac issues, migraines and fibromyalgia, complex regional pain syndrome. The crushing guilt of being an ineffective mother, giving birth to two children who each have 5-6 illnesses inherited from me and their father who hurt them physically and emotionally especially when I was in the hospital getting 8 reconstructive spine surgeries with hardware, screws, plates in nine years covering most of my spine. My son is autistic spectrum disorder high functioning and affectionate. I’m so lucky to be here for my kids with my kids. I understand that without emergency surgery and a fully invasive opening, I wouldn’t be here today. I’m grateful to Gd for saving me. What have I done to my kids. I wasn’t so sick when I got pregnant. I didn’t know when I got pregnant that the kids father’s side has most of the same illnesses and there are many. Now both my kids, as they mature, their health diagnoses increase to longer terrifying lists of diagnoses including many of my dozens of disorders including from Crohn’s, epilepsy, an unspecified connective tissue disorders, immune modulatory disorder, endometriosis, interstitial cystitis, seronegative rheumatoid arthritis, primary immunodeficiency disorder, MGUS/multiple myeloma (monoclonal gammopathy of unknown significance), demyelinating syndrome like MS without known disease prognosis. This year I almost died three times from necrotic aspiration pneumonia with large abscesses in my lungs. I am eligible for the reversal ileostomy surgeries (2 surgeries- the first 8-10 hours is almost as devastating as the emergency colectomy. There’s a small window (4months) when surgeons can do this. It’s my only chance to get my life back to live w/o an ostomy. It’s a long process after surgery and the stoma is repaired in a follow up surgery. I need this surgery. It’s a long long recovery and major surgery with many complications. How can I do this to my family? I worry that my son & daughter can’t handle this much disruption, stress, sadness. We have such little support and no one called my kids to check on them as the plan we created was supposed to happen in emergencies. No one called. Every one gave excuses, so disappointing. Such a problem for future surgeries. I know they should be independent by now yet given their medical status, being an independent young adult is very challenging. I’m so thankful to my daughter who has been helpful beyond any thing I could have hoped for. She’s incredibly giving and loving to me. It’s hard to be here. Not functional, not effective.
#UndifferentiatedConnectiveTissueDisease #MixedConnectiveTissueDiseaseMCTD # primaryimmunodeficiencydisorder #PrimaryImmunodeficiency #AutoimmuneImmunodeficiency #CrohnsDisease #PTSD #ComplexPosttraumaticStressDisorder #ComplexRegionalPainSyndrome #CongenitalHeartDefect #Epilepsy #RheumatoidArthritis #DegenerativeDiscDisease #Scoliosis #InterstitialCystitis #Pneumonia #AspirationPneumonia
#necroticpneumonia
#Gastroparesis #gastrointesinlbleed #RheumatoidArthritis #singleparent #SjogrensSyndrome #DiffuseIdiopathicSkeletalHyperostosis #Diabetes #ComplexPosttraumaticStressDisorder #Ileostomy #Colectomy
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I awoke this morning after yet another night on the sofa with Binks, my wee dog. I have chronic insomnia and so much pain I can’t climb the stairs. I was in luck last night, the start of a meteor shower, so many shooting stars, who needs fireworks? A brief glimpse the Northern Lights and a cup of tea at 3 o clock.
I’ve just kissed my husband, Paul before he goes to work. Every morning I make his sandwich, yes he could do it himself and happily would, but, it’s my little way of paying all his kindness back.
Ever since I had my Covid vaccine 3 years ago I have a shingles type rash in my genital area. It’s so, so painful, it’s like having pants full of fire ants.
It’s been a very, very rough 4 month’s, I’ve fallen down the stairs 4 times, bruised myself very badly, I’ve had Covid, 2 very dear, very fit friends died, far too soon. One a super fit, marathon running woman, days from her pension, had a back ache, went to the doctor and was told she had stage 4 pancreatic cancer, she lived just 11 days after diagnosis. The other a lovely, gentle bear of a man died from heart failure. One 65, the other just 60. It made me reflect that despite this godawful disease of mixed connective tissue disease, fibro, Behçet’s and rheumatoid arthritis, I’m still here. I’m so in tune with my body and its numerous creaks and groans I’d notice change. I miss them and will plant them roses in my rose garden. I’ve planted too many over 3 years.
Today I’m taking Binks my puppy out to the forest, it’s literally just our my door. I use my wheelchair, she runs ahead. I hope to sew butterfly wings for my granddaughter Emma and make a unicorn hobby horse.
I’m grateful for every moment of every day, could it be better? Of course, but, it’s still pretty wonderful.
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If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “
The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .
He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )
I smiled and said to him
“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “
And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .
I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .
With a chuckle and a smile he told me he was Jewish 😂❤️.
He could not wrap his head around how I see the world .
And I could not wrap my head around how he sees the world .
Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .
I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .
But as it rained , 2 rainbows formed
And through my conversation with this man . The rainbows just seemed to get brighter .
As I left the party , feeling a new perspective on how to face my current dilemmas .
I couldn’t help but say a silent prayer to God thanking him for the rain in my life .
So I know just how important rainbows are . 🌈
How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine
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Hi, my name is Reliantharp5042. I'm here because I have Mixed Connective Tissue Disease and Lupus.
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