Health issues, mental illness, insomnia

@aprilchristy, there is a lot to unpack in your post. While you say it is a long post, I have to congratulate you for writing many years of events in such a concise post.

As I read your post I see many triumphs. I see how you have perserved, healed, and overcome. You've harded work, commited to reflect on yourself and dedicate significant effort to improve and maintain your mental health and find supportive relationships. You are surrounded by people who support you both family and medical professionals.

You're not alone. But you feel alone. As contrary as that sounds, both can be true.

You've worked so hard, but life, health and things just keep kicking you down. It's not fair. The cycle of health issues, infections, lack of sleep, is brutal. Not getting enough sleep can make that mountain you're trying to climb even steeper and harder to cling onto.

@aprilchristy, did you find it helpful to write your post? As you re-read it what do you see? I look forward to hearing back from you.

Thank you for your reply.
It was helpful to get my feelings out and to go back and re read what I wrote after you said the things you said in your reply. It feels like a lot because it is a lot, like you said it’s a lot to unpack. I realize that I not only caused myself a lot of grief and needed healing for staying in an abusive relationship for so long but it has affected my two kids, in two totally different ways. My son worshiped his dad and my daughter is working hard with a counselor to deal with her own PTSD from years of hurt to her and things she had to see and hear. I just pray my son gets the help he needs and deserves and don’t follow in the footsteps of what I allowed him to be exposed to for so long.
Re reading my post, I am reminded of my wonderful husband, understanding daughter, and parents who never give up on me, even when it would have been the easier option. All of them truly love me, I just couldn’t see it or believe it for so long, but they really do.
Getting my feelings out first thing this morning, in this post, allowed me to write it all out and move forward through another hard day.
Thank you for your kind words, they really did help me look back at post with a little different perspective.

I was you for years. I discovered the less my family heard of my illness they came around more. I lost friends too. Inside me, I think I felt if I said something, they would have an idea. I was not physically ill at all. Another thing was being around people with their issues. I feel, I knew how bad I felt, I must listen to them, hoping I could help. Eventually on my good days, I was being pulled down with their woes. Being a workaholics the best way to feel better, was gor my to work very hard physically. Adhd, type a, isn't helpful. When mom was sick, I was busy and focused. Dad died, I was helping, my husband was dying, I was focused. Now 74, getting physically unable to focus with pain, and debilitating back, I see me sliding. I see I have things to do, but the pain is stopping me. My point is focus on something like painting a picture. So what you say you don't know how. Artist can create anything and it is still art. There are small sets to get going. Make jewelry. Braid rag rugs. Paint bugs on rocks. I was ill and got some 10$ ear buds and someone hooked me on mystery podcast. Facebook my new discovery. So many funny crazy things about pranks on each other, crazy cat antics, dogs doing funny things. Babies doing cute things. I laugh so much at that stuff. It is healthy to laugh. Then you have something to share that's funny or even interesting. I've also signed on sites for foraging. Oh my gosh, my lawn is full of edible food! Facebook can consume your whole day. But remember to get exercises of some sort. Use it or loose it. Get busy girl. Good luck!😁

I have learned to stay as busy as I, physically, can. I recently started listening to Audible books and love it. I used to read a lot but unable to right now. Figuring out things like that help. I have a tear and bulging disc in my neck so looking down to read or paint is very painful. I get what you are saying though. I have built up to walking 16 mins, without stopping, a day. I have been working on this for over 2 months and I’m really proud of this accomplishment and have a goal of 25 mins a day. I haven’t missed one day of walking, doing the morning stretches/movements, and shoulder and neck exercises the physical therapist has given me. I limit myself to 30 mins of social media a day because things that pop up make my anxiety worse and make me worry. Then I watch one video that is cute or funny then inaccurate news pops up then I get on a rabbit trail of worries.
I started listening to praise music and joined a small women’s group (which with my anxiety was a really big step) but I’m trying hard to stay busy and do positive things.
Thanks for your input, I appreciate your time and thoughts.

@aprilchristy Hello, I knew someone in high school who was named Christy and was born in April. I know it is not you, but she was a great influence in my life. There is so much going on in your life. Sometimes people have one challenge and all of sudden, it cascades into a waterfall of challenges.

The other day a doctor asked me a question about a procedure I had done in 2021. Days later, I found myself hiding from everyone (sometimes at this computer) crying and remembering everything that has gone bad in the last two years. All of the trauma and uncertainty in my life just came out from a simple straightforward question. It was certainly not his fault. The point of this, is that I can really focus on one thing and work on it at a time. Sounds like you are doing that.

I have been lucky to have some great friends who listen to me drone on through some tough times. But I try to give them a break. So my advice is don't judge too harshly. Maybe just making sure they know how much they mean to you in these tough times...maybe do something social and that is issue free? like a movie night, game night (my friends are all over the place).

Like @colleenyoung mentioned, I hope writing about all this has helped. I know you have worked so hard. My advice may be off, ultimately, I feel usually people know what to do but sometimes need a sounding board.

Good evening! I'm so sorry to hear all you are going through and have been through. It is good to hear you have such a loving, patient and supportive husband, daughter and parents. Our support systems are so very important during difficult times. I'm curious what the diagnosis is that explains all of the physical ailments/symptoms, etc. if you're willing to share. Thank you for opening up here, you are not alone.

Thank you for your reply. I try to remember my friends have their own lives and are dealing with their own stuff. I send text that I’m thinking about them, love, and miss them. I do this often because I don’t want them to feel it’s a one sided friendship. You’re right, writing this all out and hearing from others has been really helpful.
Funny thing is, I was born on Christmas Day and they named me April. I’ve been trying to figure that out most of my life lol

Thank you for replying. I am fortunate for the support team I do have. My daughter FaceTimes me several times a day with the baby, if she doesn’t bring him to see me that day. He instantly cheers me up and he knows my voice and smiles every time he hears it or the ringing of a FaceTime call. He has helped me more than he will ever know, the last 5 months of his life.
Seven years ago, I got where I couldn’t eat without throwing up within next few hours. After a 9 day hospital stay, I was diagnosed with gastroparesis (kinda like a partially paralyzed stomach) so I’ve learned what I can eat and in very small portions but I didn’t have any risk factor like diabetes that would explain the diagnosis. Within a year my bladder quit working (bladder retention) so I had to start catheterizing and eventually got a bladder stimulator that helps a good bit but still have to self catheter often. After that my gallbladder was only working at 3% so I had to have that removed. I was diagnosed with pelvic floor dysfunction and wound up having a rectocele surgery to put things back in place and I have to get pelvic floor Botox injections every 6 months to keep those muscles relaxed to help with urination and pelvic pain. I have had 3 tears in my left knee and one in my neck and shoulder now, all without a fall or injury, they just started hurting terribly. My knee dislocates and is very painful to pop back into place, has even happened in my sleep when rolling over in bed. My shoulders have been getting worse with subluxations especially when trying to lay down and sleep. I’ve seen so many doctors. I have quit seeing all my home doctors, they just made every issue worse with their approach so now all my doctors are at Mayo now, and they have been amazing. A few months ago, I was doing a pre op evaluation with a nurse practitioner at Mayo for my upcoming Botox injections and was venting to her about the last 7 years and how none of it makes sense and no one has figured out what is causing all these things to happen in my body. She kept asking questions, then asked me to try and do some things with my body and she asked me if anyone had ever tested me for Elhers Danlos Syndrome. No one had and I had actually never heard of it. She put in an order to the EDS clinic which wasn’t going to be able to see me until February but I called every few days and was able to get in on Halloween. I didn’t meet one criteria for EDS but was diagnosed with Hyper-mobility Spectrum Disorder which is a soft tissue disorder. You have soft tissues all through your body and mine are super stretchy and fragile. This is what has caused the unanswered tears in my joints and the dislocations. Soft tissues also hold organs in place and when they are stretchy, the organs move and over time causes nerve damage which is what has caused the stomach, bladder, and gallbladder issues. There’s not a cure but now that we know what is causing it, I’m learning safer ways to move my body, just because my neck or elbow move abnormally far (which I always just thought was normal), I am learning and retraining my brain to stop movements in safe positions and building up my muscles to better support them. I’m gradually building my strength and endurance back up and trying to get a better quality of life back. It’s crazy that a pre op NP put it all together after all this time and got me a much needed answer. Just having answers has helped me mentally deal with it better.
Anyways, thank you for taking the time to ask and read what I’ve said. It’s helpful to talk about it to someone that isn’t tired of hearing all my complaints.
Have a great day.

I'm honored to hear your experiences and thankful for being able to help if it is just to listen. I too have been a medical mystery for much of my adult life and have been blessed with physicians that have been tenacious in their searches for answers and treatments, one was called crazy by a colleague when he prescribed ivermectin for post-COVID syndrome in the early days of COVID when long covid was considered "not real' by the medical establishment. People around me have not always been the most supportive and I've heard, "It's all in your head" a thousand times if I've heard it once. This has become my safe space for venting and learning and trying to help others. I'm so glad the NP listened and asked the right questions to get you to the answers you have been looking for for so long. I know that having a name for what is going on is tremendously helpful even though the road to recovery can still be long and arduous, we finally learn that we are not, in fact, crazy. Good luck on your continued journey toward healing and retraining your body and brain. Nothing but the best!

Good morning. What a nice message to get up to this morning.
I know for me, I started wondering if I was somehow making these things happen to myself, after years of no answers. At points, I felt like I was crazy then other points I just knew in my heart something was not right with my body. So, yes, getting answers, even if there’s not a cure, has helped my mindset a lot, most of the time.
I’m sorry you struggle with the unexplained too but grateful for good doctors, NP, and PAs.
Hope you have a wonderful day!