Sick All Day Every Day
....spacey,emotional....weathers nice...thankful for my car. Wake up every morning, weak and sick...
force myself to listen to radio or audio books until 1:00pm and then try to move around.
i have head burning constantly, but is better now than was in winter! Panicky in bed....feels like body explosion..anxiety attack...cannot eat until 4 pm, only yogurt and fruit and then abit of appetite grows 5:00-8:00pm ....so depressing...stomach aches often until evening....nothing helps.
Another area of panic/ anxiety-- I sit very quietly in the living room and sip herbal tea for 45 minutes--- and I know I'm going to crash in 45 min. I get so sick and weak--- almost cannot go back to bedroom--- suicidal fear and exasperation. Then if I can get through to 3:30-4:00 pm I carefully plan my clothes,purse and pack some cheese or raw veggies- and take my power chair to the parking garage and go out-- but I can hardly stand or walk, temp in cafe,store, etc.. Affects me...noise,music very bad.
i keep telling myself I am lucky to have this freedom-- a car, a good marriage, a secure home, etc..
but I feel that almost every moment of the day I am panicking inside, depressed, nervous, sick...I believe it is more brain chemicals than(my attitude)...and I struggle to stay calm. I always have to be in bed by 5:30 and then get up at 7:00 to make dinner.
after dinner the tremors get severe, skin burning all over and sometimes nausea attacks.
i am thankful that I can complain without judgement to my DS friends. You are all precious friends and I send you healing light. I have had some good moments, but to tired to continue-- just needed to vent.
love to you all.....Tiina
force myself to listen to radio or audio books until 1:00pm and then try to move around.
i have head burning constantly, but is better now than was in winter! Panicky in bed....feels like body explosion..anxiety attack...cannot eat until 4 pm, only yogurt and fruit and then abit of appetite grows 5:00-8:00pm ....so depressing...stomach aches often until evening....nothing helps.
Another area of panic/ anxiety-- I sit very quietly in the living room and sip herbal tea for 45 minutes--- and I know I'm going to crash in 45 min. I get so sick and weak--- almost cannot go back to bedroom--- suicidal fear and exasperation. Then if I can get through to 3:30-4:00 pm I carefully plan my clothes,purse and pack some cheese or raw veggies- and take my power chair to the parking garage and go out-- but I can hardly stand or walk, temp in cafe,store, etc.. Affects me...noise,music very bad.
i keep telling myself I am lucky to have this freedom-- a car, a good marriage, a secure home, etc..
but I feel that almost every moment of the day I am panicking inside, depressed, nervous, sick...I believe it is more brain chemicals than(my attitude)...and I struggle to stay calm. I always have to be in bed by 5:30 and then get up at 7:00 to make dinner.
after dinner the tremors get severe, skin burning all over and sometimes nausea attacks.
i am thankful that I can complain without judgement to my DS friends. You are all precious friends and I send you healing light. I have had some good moments, but to tired to continue-- just needed to vent.
love to you all.....Tiina
Replies
Oh, Tina. It sounds horrible. I have had the burning skin and the nausea, but only when I am crashing. Are you crashing or is this normal for every day? I can imagine you are quite upset and at the end of yourself with these symptoms. Doctors often don\'t suggest any really good options for symptom management, but it seems like someone needs to know how awful this is. Is there any doctor you know who would care enough to address any of the symptoms? It just sounds awful. Try to rest when you get those tremors. Nothing else seems to calm them but rest. You have all of my empathy, dear friend. Love you, Heather.
Pouty, I am so sorry you are having such a rough day. And I believe that it helps to vent, as much as you need to. No judgments or negativity here. (I know that talking to people outside DS gets me nowhere. Some people don\'t even believe me...and that hurts.) Praying for u.
xo
Lulu
Dear Tiina ~ I\'m so concerned to hear the desperate situation you\'re in being so sick ~ how rough your day is every day. I\'m with Heather wondering whether a doctor could help you with at least some of the symptoms. I remember when I used to have bad anxiety attacks ~ I was fearful, so anxious I couldn\'t sit still in one place for more than a couple of minutes and so nauseous I could hardly face food.
I used to always try to manage with as few drugs as possible since my mother had bad experiences with being over prescribed drugs by a quack doctor. After a friend told me how much it helped her, I do now have a psychiatrist prescribe an anti-anxiety medicine for me ~ it makes a HUGE difference. I don\'t have the panicking, fear and nausea that I used to have. It really wasn\'t possible for me to stay calm just doing deep breathing or trying to think of other things ~ but the medicine has totally taken anxiety away as being a big problem for me. I don\'t even need to take it regularly anymore ~ just as needed.
Of course I still have serious fatigue and other health problems due to having CFS that I can\'t take meds for, but not having anxiety on top of everything else does make life better. I don\'t want to sound like I\'m prescribing for you so I\'m not going to say the names of the two anti-anxiety meds that I\'ve used here. If you\'re interested to possibly ask a doctor about them, please message me. With as much panic, anxiety, nervousness and nausea attacks that you\'re describing, I would think it would be worth it trying to find some meds to help you if possible. Please forgive me if this is something you\'ve already tried and it wasn\'t helpful.
You\'re such a wonderful woman with so much to offer ~ I truly hope there\'s something that can help to improve your quality of life. I admire you so much that you do get out and do what you can with your car and keep a good attitude despite all that you\'re going through. I\'m glad that you write and share your thoughts here on DS. Thank you for sending healing light out to us ~ reflecting it right back to you sweet Tiina in the hopes that you have a few more good moments in your days ahead. Love and gentle hugs, Huelani
Thank you all, for your great empathy and support. It means the world to me. Yes, it\'s true THERE IS NOTHING THAT WILL LESSEN THE SYMPTOMS.
I have spent thousands of dollars on naturopaths, homeopathy,supplements,etc..
Can\'t even count the doctors and specialists. Anti- anxiety meds in daytime make me weaker.
I have suffered some forms of extreme symptoms for a very long time. My spiritual growth over the last year has clarified to me that searching for remedies is over. A small improvement has been a psych I saw about 6 months ago who put me on (an additional) anti- depressant, Amitriptyline, which has improved sleep, almost always get 7 hours.
I kind of had a busy, hyper personality, before I got so bad.....and in a funny way...I can see how God has prepared me for this....getting adrenaline from laughing with people and trying to act out my hyper energy does help a lot with the coping. Especially my theatre group(9years) has shown me this.
IF YOU ARE ABLE PLS GIVE ME YOUR FEEDBACK ON THIS:
I tried taking Lyrica, which has helped a lot of people with pain. About 2 years ago it was given to me for burning mouth syndrome--said can take 6 max a day. Well did nothing. On a few days I said, oh, the heck with it and I took 4 at once-- and guess what? I had an euphoric high which lasted 4 hours. My mind became hyper aware--- and my emotional reaction was to appreciate everything around me, like a veil had lifted. However, as usual, it made me feel sicker at the end.(I also get this sick with no drugs, so what\'s the difference!)
I have been carefully considering taking 1-2 of these pills when very stressed, as it feels like a glass of wine used to (when I was young). I am keeping a record of my dosages and reactions-- even one gave me the same reaction! Better not try 4 at once again!!
However, the euphoric feelings were mixed with some anxiety and take a long time to wear of--- 6-8 hours. I\'m thinking of trying it ,say,8a.m. Because my worst time is 12:30-2pm when I get up and have severe depression at that time-- maybe it would cushion the blow and wear off soon after.
Appreciate your comments and love to all of you!
Oh Tina - I am terribly sorry to hear how rough things have been for you. The things you are describing in your journal sound just, well, almost unbearable.
Having never taken lyrica, I cannot comment on your inquiry, but it sounds like it might be useful for you to experiment at the low dose and document your response. God, I hope that is helpful. The depression and anxiety along with the stomach stuff is the worst (that is pretty much why I have been absent from DS lately myself). I say anything you can try that brings any relief is worth a shot. You have suffered greatly. I so admire your tenacity and perseverance in making sure you get out of the house and get air, in your car, a change of scenery. Your mentioning that your spiritual growth helped you decide to stop looking for help for symptoms. I still chase that around with my naturopath, and sometimes I am helped, but how did your spiritual practice help you let go of that, if I may inquire? I feel like my psych MD and ND are my life-lines! Anyway, dear, brave, funny Tina please know that you are loved and I send care your way. I also send a virtual foot massage to you.
Many hugs for improved well being,
Denise
Maris, you asked how did my spiritual practice show me to stop chasing for cures. It was a combination of many small factors. I gave up somewhat much earlier than others after 7 years. Maybe that was because I have a more rational or practical style in my personality type. Also, 90% of things from
alternative drs, supplements,vitamins, etc... Did nothing! My acknowledgement
of failure...grew slowly over the next 10 years. I saw the writing on the wall re: research that indicates many chronic illnesses like lupus,ms,Parkinson\'s,etc..
Have no cure. I didn\'t want to waste time searching for a magic bullet-- that would never be found. Meditation has revealed to me to look back over the years of problem solving---and live life fully \"while sick\". Everyone has their priority passions, feel good arenas ,although diverse, in their life to pursue for their psych well being.
Spiritual practice--reveals to us to pay attention to our own unique passions for healing. Mine was to belong to community groups,churches, attending free lecturs,workshops,etc...God said to me ---you can give up your health but don\'t give up your activities. Too much loss. Aborting the plan for treatments, is a personal decision.Time and time again, remedies and change of diet did nothing. It became too stressful to search for more alt drs but mostly my anger about this relenting illness and how many people it affects was the last straw!!
I hope your search is fruitful and your journey will unfold by divine prodding.
Hi! You mention a lot about your depression/anxiety. Is that being treated? Because if it\'s chemical, as you feel it is, medication should help!! My anxiety is low key, but daily. I take meds for it and it helps me. My depression, comes with the situations I face daily. I don\'t consider it chemical depression. Antidepressants make me very sick. But I did try. I find the anxiety to be the real problem.
I also gave up on trying supplements and such, years ago! I\'ve been sick for eight years. Four of them, I think I was open to treatment. But honestly, never went for any. Outside of my anti-anxiety meds and some sleep medication, I don\'t take anything. My body simply doesn\'t respond well to chemicals. I have an herbal remedy for my stomach woes. It\'s called \"Heartburn Free\" and it keeps the stomach pain pretty much at bay. Food allergies, are food allergies! I just have to avoid the foods! This is a horrible disease that cuts us right off at the knees. The best we can do is what you\'re doing. Be thankful for the good that you have, and don\'t waste a lot of time, energy and money searching for a cure. There is no cure. We all deal with the same symtpoms, every day, and thankfully have DS to come and share our misery!! No one will ever criticise you for that. We all deal with it.
I think you are wise to find your spiritual path and stay on it. That is what helps me the most, my faith.
I pray that you find some relief, my friend! xo
Tiina, I can add nothing more but to pray for your relief from these terrible symptoms. I have dealt with depression for years & it is because my brain does not make the right chemical. I have taken an anti-depressant for years but still deal with the depression from time to time. I could not have made it without some kind of chemical intervention. Even if you have tried some that did not work for you doesn\'t mean another won\'t, that is why there are so many of them because we are all different. My first one made me really loopy & sick & I said I would never try another but I did & am I ever happy that I tried it.
Keep us posted how this is going for you. You always try to be so positive & thankful for your blessings. You give me hope in all that you do in going out & being part of a group. I am usually depressed when i wake up & have to lay & pray for awhile until I pull myself together, then I feel better. I wish I could help you, have you tried therapy? just a thought. Gentle hugs to you, Denise