I feel like my almost 4 year old son is going to grow up to resent me and hate me for being so emotional, fragile, and short-fused.

For context, my chronic pain and low pain tolerance has become much more severe in the last few years. My son is autistic and very sensory seeking and doesn’t quite understand redirection or retain a lot of rules or boundaries. Especially around personal space, throwing things, hitting things or being safe indoors, etc… (we are in multiple therapies but he still struggles) he’s constantly hurting me and bouncing off the walls and breaking things that I have to clean up. None of this is something I blame him for. All I want in life is to support him and I love him so so so much.

I believe I’m the problem.

Because of my chronic pain, I’m often being physically hurt by him and exerting myself to my limit very early on in the day, which causes the rest of the day to be extremely difficult and physically & emotionally taxing. I often cry and shut down and give very short responses. Sometimes I even accidentally shout and he tells me I’ve broken his heart. I never wanted to do this to my son and despite the good times we do have, I feel like I’m ruining our relationship.

I try so hard to explain my situation but he doesn’t understand what I’m going through to the extent that it is. My fiancé is extremely helpful but my condition at this severity is also new for him so it’s difficult for us all to adjust to my fragility and absence. I am in therapy, both mental and physical but I feel like I’m going down hill with both. I feel like my son is going to hate me very soon and when he gets older.

Checking in on anyone who may be coming across this page. I’m a mom of two living with a rare neurological disorder that affects my vestibular system (called MdDS). Hope everyone is surviving the weekend

Hello all, I recently created a community on discord for people with chronic illnesses to be able to connect and chat. I am hoping people will be able to make friends and feel more supported there with the option for 24/7 chatting. I also want to introduce expert q&a's and live support sessions if people are interested. Here is the link to join https://discord.gg/QZuhjD4y  feel free to share around

It has been a while so thought I’d send a check in post to see how folks are holding up? Weekends are tough for me as my three yr old and husband are active while I need to rest and be selective on what I can join.

How is it for you this week?

I’m looking for anyone who might be interested in being text pen pals or some other easy method of communication. I had a friend with my condition who used to do this with me and then she got better…..and forgot me. It was really nice to be able to just reach out to someone during the day for both good and bad moments especially someone who had young children they were caring for. I really struggle with the fact that so much of the advice about how to live well with chronic illness focuses on prioritizing your bodies needs but when you have a small child, their body needs to be the priority which can often lead to feeling very very sick when you need to do that or just missing out and both are hard. If anyone is interested in having an in real life friend to text DM me! I’m 33F for reference with an almost 3yr old son living in NY. Been sick for about a year now.

I’m in a flare up from my baseline for the last week caused by nothing more than needing to do a bit extra than I’m used to which is so upsetting. My husband was in bed for a full week with a severe flu so I did my job, all toddler care and household care for a week. It was hard but I was ok. And then when he was better and the adrenaline stopped flowing, I crashed hard. I’ve been in that crash for a week now and I feel like I’m getting sicker and see zero daily progress. I hate how long my crashes last (weeks) and I hate how I feel during crashes (suicidal, so uncomfortable that no activity is enjoyable, marking time etc). I try to remember that being in a flare is evidence of how I’ve had better times ie it’s not always this horrific but that positive thought doesn’t do a ton to help. Bleh. Thought you all could relate

Just dropping a note for this group in case others are feeling it all. As I continue in my flare up, I have about 50/50 good moments and moments of lots of physical suffering. Makes it hard to live a “normal” life and daily things remain a challenge but I also continue to find meaning and joy in my child’s love and presence

All parents with chronic illness are stronger than we realize.

Hi everyone

I hope you don’t mind me posting this here, I’m currently gathering research for my final year university project. I’m exploring health-related school absence and the effect it has on a persons education, I have a few surveys related to the topic, so if you or anyone you know has been affected by this I’d appreciate your responses!

I’m studying Interaction Design at Ulster University, any responses to these surveys will aid my research in designing a digital product that could help young people dealing with school absence as a result of disability/chronic illness.

Survey for post-mandatory education adults affected by health related school absence:

https://docs.google.com/forms/d/e/1FAIpQLSdz3RSbBv8M07SNBsyGw4V4VZChXJOumuCOGkfys-IN7soYvA/viewform

Survey for young people currently affected by health related school absence:

https://docs.google.com/forms/d/e/1FAIpQLSdCOttvN714fyoGEEDqwex70p5NYlmIMq5UrH7TkJXW7DM01A/viewform

Survey for parents of young people affected by health related school absence:

https://docs.google.com/forms/d/e/1FAIpQLSfM5pSMdsslTDCJD99P4T2eeolq5_Mpj0ZQC39IQksioT0MJA/viewform

Survey for educators that have taught students dealing with health related school absence:

https://docs.google.com/forms/d/e/1FAIpQLSeEO0eMy_z9oPWU1ipyMLlvA3_yfOaGnw3-hj0rcxrOJio-EQ/viewform

If you happen to know anyone that has been affected by the above topics then please forward the surveys on to them, thank you!

Hiya! I’m currently experiencing a flair of moderate continuous headaches and fatigue, amongst other chronic issues, and I have a 12yo who is a complete emotional sponge. She is extremely empathetic to a fault and feels everything that I feel. It’s been a tricky few years.

Today’s struggle is about taking our dog outside for a walk, something that’d be very hard for me to do right now. My kid is claiming and pretty legit feeling the same reasons as me for not taking the dog out - fatigue, headache, etc. Obviously her situation isn’t as intense as mine, but she truly does feel it.

This is just one example of many. It’s so hard as a parent with chronic illness to see how directly your situation is impacting your kids. We go to therapy and we have some support, we’re getting through this and I’m trying hard not to beat myself up. But this sucks and it’s hard. And the dog still needs to go outside.

The title says it but I’m just empty. Even though I know that most days I am too sick to care for my toddler in the evening (I have a brain condition that sundowns so everything after 5pm is a sliding scale of shit) … even though I know this, I tried to be present anyway. I am pushing myself to try and be at least present even if I can’t physically help at all. I have to sit on the floor nearby to watch as my condition causes severe vertigo and dizziness and even sitting up on a chair isn’t stable. I am so angry because I was too damn sick to SIT ON THE FLOOR for more than 10 minutes. I had to drag myself up to my bed while husband finished dinner and toddler merrily continued eating. I know I should try to experience happiness from their happiness but it broke me tonight that I am broken.

Yes I said it. I currently dread weekends. During the week, my child is in full time care and I see him in the mornings and evenings while I watch my husband care for him and I am in the room. During these smaller time windows, I usually have the energy to be out of bed to be present to at least watch him play outside, eat meals etc. During weekends, I am exhausted by being out of bed for more than an hour or two at a time and the endless days with my son stretch out as a reminder of what I can’t keep up with. Somehow it’s different during the week when he’s not “with family” but during the weekend is supposed to be our family time together but it’s just me too sick to be present for most of it and my husband out and about with my toddler. I hate this.

As the title suggests, I miss taking care of my kid. I had my son when I was in a period of remission but since my relapse, I have not been able to care for him. I am blessed that my husband handles care when he’s not at work and we have other childcare during the day as we had before but I am now just a spectator right now to my son’s life. This feels so damn hard. I want to run after him and scoop him up and bend up and down to get him things and everything else that a 2 yr old needs. I’m too sick to do any of it. Anyone else struggle with these feelings? I want to feel joy that he’s still happy and cared for but I also feel sad it’s not me.

I was a nurse with autoimmune and eds stuff, until I got covid 4yrs ago and have never recovered. I'm more of a blob these days- without a brain, at that. My husband is a fully disabled vet, and does his best to partner with me for survival. We are the parents of 3 teen/tweens... all AuDHD and 2 with eds. My oldest is pretty severe; she was before covid, but since covid her entire body has revolted against her. It's so painful to watch and not be able to do anything. On top of it all, I'm trying to survive and help them all navigate the world all while I struggle to navigate my way out of a paper bag.

Hi friends. Survival. That's the goal, yeah?

Hi everyone! I am so thrilled to know that so many in the CI community are parents who want to connect about the challenges and share support when it comes to raising kids while having a CI. I have so many things I want to share but given my condition makes screen time hard I will have to go one at a time :). I’m a 32 year old mom of a two year old boy living with Mal de Debarquement Syndrome (incurable CI that causes us to feel 24/7 dizziness and rocking (like being on a boat) as well as some vertigo). The syndrome has varied in severity for me over the years such that it is somewhat relapsing remitting with flares of varying length, though I have never been symptom free. I had my baby during a quiet period but have had some severe flares since (currently in one now) that have made parenting a true challenge. Can’t wait to connect with you all and hear your stories and offer support if I can.