When things just don't get better

Hi my name is Kim and I just read your post. I feel for you. A little bit about myself, I have rare disease that not even my doctors can help me. I came onto the Mayo Connect about 6 months or so to see if I could connect with someone who I could talk to with the same disease and there isn’t anyone here that I have Myotonia Congenita . I like normal but my body is fighting my muscles and everyday especially now in the winter it is so hard to move. Please don’t give up. What kind of illness do you have besides the mental issues? I have also Anxiety, depression OCD and I am a Germaphob.

@daphne47 You were working with a therapist and provider to address your mental health and you were seeing positive results until your chronic illness. You have been working with medical providers to address chronic illness for the last 15 years but you have not had relief and you are feeling hopeless. You are looking to connect with members that can relate.

It's normal to feel hopeless but I need to ask if you feel you can keep yourself safe?

Members like @210030sa @ericstene @lsittll @rollinsk have been part of discussions related to mental health and may be able to help.

It sounds like you have a great provider team (therapist and medication provider) but you have less informal supports (friends and family). Did I get that right?

You are part of the Connect community and reaching out. You are part of the Connect community and so Connect members are part of your informal support group.Obviously there are a lot of barriers (COVID-19, chronic illness), but I'm wondering if you have considered expanding your support circle? I'm also wondering what creative ways you could do this?

@daphne47 You have PTSD and anxiety, and work with chronic illnesses every day. Have you spoken to your therapist about your concerns, and checked to see if there should be a change in medications? I know from my own experience dealing with chronic issues, that they can be very energy-sapping, both physically and emotionally. We expect our bodies and minds to work correctly, and it can be frustrating when they don't. It can be quite a challenge to stay positive, so look for something each day that can help you smile.

Do you journal or write things down? This may assist you in moving to a better place emotionally. You don't have to reread, or share what you write, if you don't want to. Here is a discussion about journaling that you might find useful: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/

Many of us have more difficulties in the shortened/colder/darker days of winter. Seasonal Affectiveness Disorder is very real, and many people find a special light that mimics sunlight will help them tremendously! Do you think that might help you?

What will you do today to help you smile?
Ginger

Yes, Ive been trying to branch out finding other support, but thats not easy. I live in the country, with small communities around, mostly land. There are hardly any resources then individual counseling...no groups etc. I've volunteered at different things in the past, but haven't had much luck. I've done church groups, not a particular favorite. And yes a lot of the time I am limited by my body....I don't have the energy, or am feeling unwell. I do push myself, but get very sick. I'm trying to juggle doctors and traveling to them all the time. So, Ive tried finding support online. Most doctors I've seen aren't very helpful. I've been told to go to Mayo but I'm not even sure if everything was set up I could travel that far right now, plus I'm not covered. It's just frustrating and I feel like I haven't really been able to relate to anyone, especially around my age. I don't have anymore ideas. My brain just feels fried.

Hi Kim. I just looked up Myotonia Congenita, never heard of it before. I'm so sorry you endure this!. I actually have muscle problems, very tight and stiff, treated with PT and muscle relaxers, but i dont like them. I have ocd too. also have issues with immune system, inflammation, digestive system. Sleep problems, but it's more of a lifestyle now than a problem. lol.

I don’t like to take the muscles relaxers either but sometimes I lose the battle and have to take them. PT only made it worse for me to walk. I am trying to find a happy medium on what to do and how long to do it. I had a break down today and I’m not sure who has it worse me or my husband as he doesn’t know what to do or how to fix it. (Which we know it can’t be fixed) I seriously sympathize for you and even if I can’t help you I am always here you can talk to, cry, scream or hell throw a fit- just so you know if you feel weird doing that I’ll just join in so you don’t feel awkward 🤣🤣🤣. Stay Strong and don’t let this fight WIN!!!

Hi Kim, im wondering if you would like to correspond through email or chat. Please let me know.

Daphne, I so much feel for you! It is so Sad right now with the quarentine! We all seem to be having issues! I have suffered from depression and anxitiy all of my 75 years! I have had many dark parts of my Life because of it! For the last 30 years I have been on medication that has helped, plus working very hard researching what I can do for myself! But as of late I have had to Dig Down and read and practice very hard not to fall back into one of those dark moments!
I also have no one to talk to about those times, so that's why sites like Mayo Connect have really helped in the last couple of years!
Bless You!
Sundance(RB)

@daphne47
I am sorry for the rough time you are going through in your life.

My wife's great aunt used to say "old age is not for sissies". I think that can be applied to life in general for many of us. When I was 12 I started to feel like a person who was, to use your word, defective. And I felt disconnected from everyone around me. I walked around feeling like an open wound for the next 25 years or so. The heaviness of that feeling lifted finally in my late thirties. A few months ago I was sent a photo of myself with my family from 1965 when I was 13. I could see that pain that I was carrying. I saw the sadness in my eyes. In my mind I could actually transport myself back to that hurting teenager that I was and recreate how it felt to be me then. Interestingly in the past couple weeks I have fallen into some of those similar old feelings. It has made me feel somewhat depressed, just like then.

I do know from a long life of experiencing the comings and goings of happiness, that it will return. Have you also known this in your own life, that pain (physical or emotional) does pass? When you are in the throws of the bad times it's very easy to forget that there is anything but pain in life. I hope yours lifts for you soon and that you will have a good day (or days) soon. Don't give up. Best, Hank

Daphne, sorry for the late response, I was trying to figure out how to respond to you. I don’t do Social Media very well. This is about the most I have ever done with that. I will keep following this post and keep reminding you that we are all here to lend an ear and hopefully some advice or suggestions to help you through. It really is tough to be going through this and it SUCKS, I consider myself pretty tough but WOW some days it just sucker punches you and you just start spiraling down. There is nothing wrong with as I call it a ME Moment were you feel no one can relate or the pain is so consuming but then you need to pick yourself up, shake yourself off and fight again. I find comfort in little pep talks I give myself. Believe me sometimes I can be pretty hard on myself but I works for me💕🥰. I would like to say Happy New Year but instead I will say BETTER NEW YEAR😊