parenting with a disability

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    Covid Jab Flare-up

    I had the worst flare up after my second covid jab, to the point that I was struggling to walk, had to get a tramazac injection (which only took the edge off), stayed in bed for two days straight, and weirdly, had some endo pain again. However, this morning I woke up and I didn't feel like I'd been run over by a bus! I nearly cried, with joy this time.

    I'm achey but in the normal, tolerable fibro way. I took my kids to the market day at their school where we enjoyed the sun and people and I got to spoil them a bit. I packed the dishwasher and just bathed my dog. And now it's time to rest a bit because I'm learning that Fibromania is a very real thing.

    The fear of a flare is overwhelming and it's hard to know when it will end. This one lasted two weeks, with this week throwing me into a pit of anger and despair. It also gave me time to think (and freak out, lol) about work and my kids and running the house as a single mom. I'm going to need to find a better, less stressful way of providing for my girls. I have no idea how, or what I'll be capable of keeping up with - chronic illness does not make for reliability and my schedule can be erratic depending on flare ups, doctors visits, and medication side effects. I also live in South Africa and it's not exactly set up to support any kind of decent career which pays the bills and isn't a CEO position.

    Not sure where to from here but I need to get out of my current situation before the stress has me bed bound more permanently. At least I feel better today and I've been able to enjoy some time with my kids and get out of the house. Perhaps it's time to take this better day and do some brainstorming on my next steps.

    #Fibromyalgia #Endometriosis #fibroflare #ChronicPain #Singlemom #ParentingWithADisability #ChronicFatigue

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    Picture Books? #ParentingWithADisability #ChronicIllness #CrohnsDisease #EhlersDanlosSyndrome #Dysautonomia #RheumatoidArthritis #PosturalOrthostaticTachycardiaSyndrome

    I have a couple of Autoimmune Diseases as well as Ehlers Danlos Syndrome and all of the fun comorbitities that come along with it. I've recently been struggling with a pretty bad POTS flare up, and I can see it's affecting my daughter. She's only three, and I know it's a difficult thing to understand. I recently had an SVT and was taken away in ambulance. She was terrified and she still talks about it. She's extremely smart and curious and my husband and I always try to be honest with her without scaring her. She loves reading, and I really think a picture book would be helpful in explaining things to her. We want her to understand that sometimes mommy might need to go to the hospital or stay in bed, but that doesn't mean she loves you any less. Any suggestions?

    Question

    Can the other parent us your disablility agaisnt in court re: custody? I have lupus and ptsd from him. Esp if your were to get on ssa.

    #ParentingWithADisability

    Question

    Specific examples of how a disability affects how you now are able to care for your children?

    #ParentingWithADisability

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    #ParentingWithADisability

    you know children are narcisstic when they put upset upon the dad's and mum's. That's not going to be my child.

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    Holidays: Expectation versus Reality

    Weeks ahead of Halloween versus the day before. I had a plan. It was to begin weeks ago. Instead it began today. The day before Halloween. I know you feel this. Life happens. Harder and with a bigger bat for some.

    Somehow I manage to pull this off for my girls, every year. I haven’t figured out how. It’s not always pretty, but everyone is happy. #ChronicIllness #ParentingWithADisability #Fibromyalgia #Humor #EhlersDanlosSyndrome

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    Parenting with chronic illness #CheerMeOn

    Survived day with both kids while having horrible flareup 🤦🏻‍♀️ heating pad and ibuprofen are my best friends tonight #ChronicIllness #ParentingWithADisability #CheerMeOn

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    Need advice

    Any parents out there with sever EDS and/or chronic pain? How do you take care of your children? I am struggling to do the basic things for myself and my children like getting them dressed, feeding them and myself, ect. How do others manage this and give their kids a normal childhood? #EDS #EhlersDanlosSyndrome #ChronicIllness #ChronicPain #ParentingWithADisability #ParentingWithChronicIllness #GeneralParenting

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    Fighting my daughter's battles

    Do you ever feel like you fight your child's battles for them? Sometimes I do it, without even realizing it. Suddenly, I realized I've pushed her right out of the equation, and I'm stripping her of her abilities to navigate this world herself - which she'll have to do eventually. Now that I'm aware of it, I'm working to back off and let her take the lead. She's getting older, and more aware of the world and it's simultaneous good and bad. She's going to have to learn to figure this out at some point, and I can't keep stepping in front of her when it's imperative she learn to step up for herself. #Parenting #ParentingWithADisability #Autism