Considering stress is a trigger for many with flare ups, and the flare ups themselves can be stressful, how do you manage your emotions and stay calm during a flare?
I'm having a really hard time with this one, because of the visual problems and the impact on my life right now. Add to that the non-responsiveness and lack of concern the neuro is showing over all of this, my stress level is off the charts lately.
Last week while my vision was blurred to the point I couldn't drive and struggled to read, my neuro didn't return my call about that or the possible seizure I woke up with the day before my vision went wonky and the eye pain started. He's waiting for EEG changes to show up, and here we have a possible seizure that could lead to a definitive diagnosis and he didn't even lift a finger to find out. I swear the man would let me die or go blind before he would make a decision to treat or diagnose this.
Then came the spinal tap, during which I went into emotional shock with the whole nine yards of shaking, sweating, hyperventilating, and was observed for shock after the procedure. Ever since then I've had the spells where I just feel like bursting into tears on a whim. Then the neuro hasn't even called with the results despite the fact they've been on his desk all week. This just adds to the whole mess.
I did myself a huge favor and drove to the hospital to get a copy of the results myself, which helped me feel better. But there is still this question of 'what's going to happen to me' left unanswered, while my vision is coming and going on high dose steroids the PCP prescribed to try and slow the process. I can drive again, but it's barely keeping it under control at this point.
Last night the seriousness of this thing hit me and this wave of grief swept over leaving me sobbing uncontrollably for about an hour until I decided to take a double dose of xanax, do some self-hypnosis and drift off to sleep early.
I don't know what to do with myself anymore. It seems the more I do, the worse things flare up. If I sit around doing nothing, I'm bored and lonely and it's all I can think about and that gets me stressed even more.
Do you have a secret to staying positive? I have to get a grip. This is no way to live. I've been doing psychotherapy every week since last winter before this even started and had a hypnosis session to help with the spinal tap procedure, and I'm taking Cymbalta. It all still seems like too much. I'm stuck and can't get past it, like I'm frozen, petrified with fear.
I guess I follow the British WWII mantra: "Keep Calm and Carry On." I have very little control and the more I try to control it the more helpless and frustrated I feel. So I kind of give into it. Roll with what ever gets thrown my way. It is actually easier for me.
I may be in a different place and time than you. They told me I have RRMS. I'm on Copaxone. Not much else I can do. I work. I nap. I don't exhaust me "energy bank," because if I do, I'll pay for it. My work accommodations are in place. Max 10 hour days. Frequent rest periods. My employer understands.
So sorry to hear about all that you have been going through lately.
Try not to judge yourself too harshly - it's OK to feel what you are feeling - this too shall pass. I think sometimes when we try to "control" our emotions too much - it backfires on us. Go with your feeling - and notice what happens to your body as you are feeling whatever it is you are feeling. This helps me a lot when I am experiencing very negative/emotional thoughts. It kind of helps you get out of your head -
I really believe that when we don't allow our emotions to be felt/experienced - they get bound up in negative energy in our body - which can lead to physical symptoms.
So I don't have a secret to staying positive - If I was positive all the time, I'd question how intelligent I was - it's normal to have a range of emotions - even in the best of times. BUT when we are dealing with chronic illness - everything is magnified. And there is such a feeling of loss of control - that fear is a very normal reaction.
What I try to keep reminding myself is that - my number one job at this time is to keep myself healthy - for my family - and that may mean more resting that I am used to - (that old work ethic is always rearing it's ugly head!), eating well, trying to do some sort of exercise every day, and allowing myself to feel whatever it is I'm feeling.
Sorry to hear about your struggles. I know how you feel somewhat. I try not to let myself get consumed with it all. I have deep faith in God. Sometimes I let melself get mad with Him. Then I begin to make myself focus on the blessings in my life. I find that if I can make that swing in thought that I can't STAY depressed. I am busy praising. We are here to listen; and you feel free to vent your anger, frustrations, and sadness at any time. Sending up prayers for you and positive energy your way!
I can feel your pain. I have been the road of deep depression before, especially when I found out I had thyroid eye disease and I knew my eyes were going to pop out of my head!!
I was so scared and cried myself to sleep everynight for the first 3 months. I went to work looking like someone was choking me .
I also know that the stress of all of that , radiation, surgeries, and so on, made alot of other things start to show up.
I have Celexa that helps ALOT!!! I love to laugh, have fun,and smile. I am normally a very patient and understanding person. This helps me stay happy!! I call it my "Happy Pill"
People always say to me,," Wow what you have been through, how do you do it, I would be a mess", I respond," It could be worse!! I am still alive,... and my happy pill helps LOL LOL LOL!!"
This forum also helps me as well!!! Best Place Ever!!
Oh goodness. So sorry you are having a difficult time. For me the key is to be extra easy on myself. If I need to just shut my self up from the world for a day, I do it. Jump in the tub, read a book, go for a short walk, listen to some great music, watch an old movie, plant some flowers, meditate, make some soup from scratch, take a nap, etc. Whatever and everything that helps rebalance yourself.
My doctor gave me some xanax to use during those times when I am at my wits end with stress. So far I haven't needed them but you bet I will take one before bed if I feel I need too. Give yourself permission to do what ever gets your through.
Eat the best you can and get some fresh air. Both are great ways to keep a positive focus. And I talk with God all the time and He has quite a sense of humor. Try Him sometime.
I got into counseling. I found a counselor who specializes in chronic illness, art therapy(i am an artist) and hypnosis. I could not afford it but it was explained to me that a hospital stay would be more expensive so I could not not afford it. The first year I went every week, now every two weeks or so.
Exercise is also key. I have to exercise everyday to keep my stress down. I walk my Service Dog, garden when it is nice, and ride a horse. Just getting out and brushing the horse helps. I also trained my own Service Dog and continue to train and care for her. I have to groom her daily. When I am anxious or depressed I get up early and walk Polly in the Mall.
Eating well helps stress. Journaling. When I started on the forum I buddied up with one person. first we Private Messaged Each other. This helped when we both started the Copaxone at the same time. Then we started calling each other. Now we are like sisters.
Humor is essential. You have to laugh at everything. Especially yourself.
Stay away from the News and Television that upsets you. My Psychiatrist is a firm believer in sticking with comedies. I am strictly reading at the moment.
Pet lots of animals. I have the most wonderful fuzzy kitty cats. Oh and three dogs.
These last few days have been so hard to maintain, no, impossible to maintain composure without a little xanax. I did notice that after I had to run out today to pick up my MRI that when I got back I was able to maintain control a little better, turned on some music to drown out my thoughts and tried to do something constructive. But within an hour I was back to the blubbering blob.
Seeing my GP today really helped. He reassured me I wasn't going to go mindless from this, although it feels that way sometimes. He doesn't think it's a CNS centered inflammation but more systemic. He said it was time to go up to the next level of specialists for testing and diagnosis.
I think maybe getting out somewhere everyday will help, along with a lot of the advice above. It's hard to think of these things when you're in the throes of grief, when you know your life is changing but not sure how it will manifest. It's all so unpredictable. The loss of control is a biggie for me. I have to work on letting go and going with the flow.
Thank you so much for the support and guidance. I have really needed it today. You all are so wonderful to share your stories and advice.
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