So many things going wrong I don't even know what forum to post this thread to

cherries04 · ‎12-05-2020

Vent post whilst awaiting new mental health plan from GP. Forgive my how scattered and random it may be.

Just diagnosed with Lupus
After 5 years of dealing with pain and fatigue I found myself bedridden, unable to care for my 5 month baby or 9 yo severely autistic son. 5 years ago I had abnormal bloods and was advised to see a rheumatologist because of the joint pain but I put that on hold due to going through a divorce as well as my then 4 year old son being diagnosed with severe autism at the same time. I put my health on the back burner and now it is all catching up to me. On plaquenil and prednisolone but they aren't doing much. I have always been able to white-knuckle it through the pain and just get on with it but lately the fatigue has me in bed any chance I get. I am halfway through my Computer Science degree at uni and can't fathom going back in this state, I struggle enough to do basic self-care tasks and look after my children. I also have "lupus fog". My brain just doesn't work properly anymore. I don't know how I am going to write code at uni or type with how stiff and sore I am should I even find the energy to return.

Homeschooling my autistic son
This has been so hard. Love him with all my heart but at 9 years old I am still wiping his bum and he communicates at the level of a 4 year old. He was non verbal until 6. At the end of the day, at 1am when the baby has finally gone down for the night, I dread going to bed, because I can't believe the day is already over and it is almost time to wake up and to it all over again.

I had been going so well...
It has been 2-3 years since I last went to therapy for depression. I left my toxic marriage, got remarried, had a baby and the highs are high but the lows sure are low and part of me sometimes misses being a single mum. Thought I had the fairy tale ending and was happy in life, in my marriage, smashing it at uni getting HDs in most of my units. To discover major porn addiction and lies from my husband as well as other issues. I hate family dinners. Sit there with my mouth shut because I only want his family to ever see the best in him and I don't want to be the one to say something that would tarnish their view of him. He tells his mum our fights and it bothers me. She only knows one side to the story/will defend him anyways because he is her son. He can't understand why I now dislike family dinners when I feel like I am putting a fake smile on and sitting in the lions den...out of characters

Nurse_Jenn · ‎13-05-2020

Hi Cherries,

Welcome back to the forum. It sounds like you are going through alot and then alot again. Lupus can be such a hard diagnosis. I have a friend going through it at and the fatigue is so up and down for him. I am sorry you are going though this. I did want to say congratulations on your new baby. I know you are an old hat at parenting by now with a 9 year old but it is also a big gap and I am sure having a newborn again still brings that extra layer of fatigue.

It is great to see you back here on the forum reaching out for support as well as waiting for a new GP mental health care plan. It sounds as it is the right time to get some extra care. I wonder if you are able to talk to your University and the counselling team there as well and explore options on that front. When someone is experiencing illness, generally Universities will try their best to support you. It sounds like you are doing well with HDs to be able to allow for some cushioning in the semester. I recall being a good student and then getting pregnant and enduring Biostats while being very very nauseous. I didn't do well in that course but I still managed to get through. Sometimes it is okay to give yourself permission to just get through. There will be so many other times where you can excel when you find your energy again.

Home schooling is something that I hear is so tough, and would be even harder as your son has Autism. I have attached a few links which have a few supportive videos from other parents who are supporting their autistic children at home. Here are a few links:

https://www.autismawareness.com.au/news-events/aupdate/autism-and-coronavirus-covid-19-the-essential...

https://www.autismspectrum.org.au/how-can-we-help/covid-19-information/helpful-resources-for-familie...

Keeping your mouth shut at family dinners also sounds like a lot of work. It often takes more energy to be reserved than to let your feelings go. I am hope that there is still hope that things can improve with your husband. Would he be open to doing some relationship counselling with you I wonder?

We are listening Cherries and if it feels good to write, keep writing. You are not alone.

Nurse Jenn