THIS IS MY LIFE
Feeling very crappy, so fed up! I get really rapid changes, and also have Pots, so over the last year it has been so severe, nervous about sitting or standing or reaching, etc.. I get a wave of nausea right away with a suicidal hot flash, feel like my head is exploding, heart beating out of my chest--- can't even describe.
I have some good moments, but if I am honest, the fear and total desperate sick feeling is pretty much all the time. Good things: sleeping well, for some time now, involved in activities, power wheelchair to get to condo car garage, my cat Daisy, watching tv with hubby at night and feeling a sort of healing that I can relax more being at home. I've developed an anxiety disorder, almost claustrophobia 5 years ago related to 1. Fear of trapped in bed sick, can't sleep during day, depression that I can't clean my clutter, no sense of identity being at home, waste of 9 years of school, etc..
I feel the presence of many female relatives that have passed and I am revisiting their heirlooms.
Bad things : head pain almost everyday for 3 weeks, tremors weakness, burning skin, fever and chills, severe mouth pain and dryness 24/7, heart palpitations, . The head pain cleared up a week ago. Now Ive had stomach pain for 2 days, can hardly eat. I've been through all this: there is no reason or treatment . It is just cfs symptoms. I've had severe gastritis for 2 months at a time, so I'm scared shitless, but I've only had the same pain for a few days since the bad bouts ended (about a year ago?). When you know there is nothing you can do, it is really horrible. Head and stomach have been checked.Severe acid in stomach: all day long I take about 3 herbal things, prescription, 2 supplements which are "wonder remedies", etc..
Can you imagine every day for 2 months! I actually wanted them to tell me it was stomach cancer.
Anyhoo, I am a gal of extreme emotions and passions-- I can't believe I have to face this every day-- the mind cannot accept.
i believe God is guiding me to the right activities now, of which I am thankful : I JUST WISH I DIDNT FEEL SO DAMNED AWFUL THE WHOLE TIME AND HAVE TO WORRY HOW MUCH WORSE I WILL BE AFTER!!
Ive had 2 singing lessons and I am very excited. I can afford maybe 3 a month this summer. I attended my community arts/ theatre group(however, the noise was terrible and I was really sick). They have a final presentation next Mondy. I plan to go-- a bit of a nightmare, but they break until October so I'm going to go.
I'm able to do short errands and I usually have tea and snacks in the car, listen to the radio and meditate in the parking lots. I'm learning to appreciate that I have my own independent car, my own freedom and for the first time in my life not panicked about my car breaking down and cannot afford. I need to appreciate what I have. I CAN REALLY SEE HOW IVE TAKEN ALOT FOR GRANTED. People can be so whinny! Including me! We get so grumpy when we can't get things or do things. What about people who live in war zones or people who barely survive in many countries throughout the world? And I get stressed if Netflix doesn't connect right away, one night!!
i am growing in Spirit. Love to all of you,
xxxxooo,Tiina
I have some good moments, but if I am honest, the fear and total desperate sick feeling is pretty much all the time. Good things: sleeping well, for some time now, involved in activities, power wheelchair to get to condo car garage, my cat Daisy, watching tv with hubby at night and feeling a sort of healing that I can relax more being at home. I've developed an anxiety disorder, almost claustrophobia 5 years ago related to 1. Fear of trapped in bed sick, can't sleep during day, depression that I can't clean my clutter, no sense of identity being at home, waste of 9 years of school, etc..
I feel the presence of many female relatives that have passed and I am revisiting their heirlooms.
Bad things : head pain almost everyday for 3 weeks, tremors weakness, burning skin, fever and chills, severe mouth pain and dryness 24/7, heart palpitations, . The head pain cleared up a week ago. Now Ive had stomach pain for 2 days, can hardly eat. I've been through all this: there is no reason or treatment . It is just cfs symptoms. I've had severe gastritis for 2 months at a time, so I'm scared shitless, but I've only had the same pain for a few days since the bad bouts ended (about a year ago?). When you know there is nothing you can do, it is really horrible. Head and stomach have been checked.Severe acid in stomach: all day long I take about 3 herbal things, prescription, 2 supplements which are "wonder remedies", etc..
Can you imagine every day for 2 months! I actually wanted them to tell me it was stomach cancer.
Anyhoo, I am a gal of extreme emotions and passions-- I can't believe I have to face this every day-- the mind cannot accept.
i believe God is guiding me to the right activities now, of which I am thankful : I JUST WISH I DIDNT FEEL SO DAMNED AWFUL THE WHOLE TIME AND HAVE TO WORRY HOW MUCH WORSE I WILL BE AFTER!!
Ive had 2 singing lessons and I am very excited. I can afford maybe 3 a month this summer. I attended my community arts/ theatre group(however, the noise was terrible and I was really sick). They have a final presentation next Mondy. I plan to go-- a bit of a nightmare, but they break until October so I'm going to go.
I'm able to do short errands and I usually have tea and snacks in the car, listen to the radio and meditate in the parking lots. I'm learning to appreciate that I have my own independent car, my own freedom and for the first time in my life not panicked about my car breaking down and cannot afford. I need to appreciate what I have. I CAN REALLY SEE HOW IVE TAKEN ALOT FOR GRANTED. People can be so whinny! Including me! We get so grumpy when we can't get things or do things. What about people who live in war zones or people who barely survive in many countries throughout the world? And I get stressed if Netflix doesn't connect right away, one night!!
i am growing in Spirit. Love to all of you,
xxxxooo,Tiina
Replies
Honey, I hear you! It\'s so hard. I want to share with you something I read the other day. There was a track coach who always made his athletes train by running barefoot on the beach. The runners complained bitterly about this regimen as they noticed that no other school required this type of training. It was very arduous to run through the sand and it slowed them down. Not to mention the burning feet! At their first track meet, their times were head and shoulders better than the other teams. Apparently having trained under such horrible circumstances had made it so that when those obstacles were removed by running on the track, they were so much better prepared than the other athletes. Sometimes I see us as running through the sand. Someday, when we face more \"normal\" obstacles, we will excel. I\'m so glad you are taking the singing lessons. I\'m sure you will love that and will do well. Let me know how it goes. Love you.
Tiina, I have been wondering how your gastritis symptoms have been recently - I guess you were on my mind - I did pray for you . I\'m sorry it is still something you have to deal with and there isn\'t really a useful treatment for it. I guess that is something we deal with a lot, but that doesn\'t make it any easier. I am glad to hear you are finding a way to take part in activities even when it\'s a struggle. I\'m with you - we have so much to be thankful for compared to many people around the world - it helps with perspective when things get tough. Hugs and love.
Tiina, may you find the relief you so badly need. I am sorry for your ongoing problems, this is such a horrible illness to have to deal with. As I read your symptoms I just wanted to cry, I feel so bad for you. Have you checked into food allergies? Some of your symptoms seem like what I had when I found out I was sensitive to Soy. I cut it out of my diet for about 3 years & the sensitivity went away & I can eat it now with no problems. But the symptoms were so much better when I got rid of it completely from my diet. I couldn\'t afford testing so I did an elimination diet on my own. Misty had an egg allergy at the same time & felt so much better when they were taken out of her diet. Anyway, just a thought. How I wish I could take find your answer for you.
You have such a positive way of looking at things, you made me smile. Even with all you are going through, you still see the silver lining. I agree that this is what we have to do. We do have a tendency to take things for granted in this country. I know I do & I try all of the time to count my blessings & be happy for what I have, not what I lost or wish I had. That is what I love about the people on DS, we work together to build each other up. I am glad I decided to come back, I really missed it. Take care of yourself, many soft hugs, Denise
Sorry I\'m so late to this journal, my friend! My life has been in a bit of a tizzy as of late.
I have the gastritis issues as well. For my first three years with this illness, that was the worst symptom I had. Constant stomach pain. I had an endoscopy (where they go look in the belly) and they biospsied and results came back that I had SEVERE gastritis. STOMACH PAIN. Ya think? They wanted to put me on Prilosec, but those kinds of drugs don\'t sit well with me. Actually, most drugs don\'t. My CFS doctor started me on something called \"Heartburn Free\". You can google D-Limonene and read all about it. If you\'re on a drug like Prilosec, this is a natural alternative that is SO good for you, and it stopped my pain completely. Now, when I have a flare up of belly pain, I just take this stuff and three days, I\'m better! I\'d be happy to give you more information. You can probably google \"Heartburn Free\" as well.
As was mentioned above, the next thing that went bad on my body was the food allergies. Turns out I had become sensitive to ALL KINDS of foods that I had no idea were causing me pain. It was worth the blood testing to find this stuff out.
I\'ve also had to deal with anxiety (for which I take a medication) and palpitations, low blood pressure, nasty headaches, and a bunch of other ridiculous symptoms of this disease that just make us all crazy. The wonderful thing about this site, is that at least we know what each other is talking about, and we will comfort each other through the tough times. Nobody here has ever told me something was all in my head!! PTL for THAT!!
I do hope you feel better, hon. This is such a lousy disease. It really defies description!! Big hugs! xo