Physical Journey
Hi, am trying out my journal thing. Hope I figure it out. Still in a sever relapse so have to catch 5 min when I can. I feel like I have been in delirium and prayer for most of the past 4 wks. Have anxiety attacks with every move, don't know what symptoms will strike me down and how upset I will get. Told my husband, my bedroom feels like an airline cockpit, trapped in for long periods, too weak to move, sometimes roll over or even reach to the Side table. Every pill bottle, cream etc has to be in exact place so I can reach almost blind. Why?
Will anyone understand if I describe?
Sleep only 5 hrs a night, have to be awake in bed 5-7 hrs everyday. Sever burning of head face, chest, sometimes whole body. I mean severe! Have to reach for spray bottle, menthol cream, peppermint cream, washcloths (wt in ziplock bags) every 5 min- 15 min. No peace.
2 freezer head bands in cooler bag beside bed. Interchange each one frequently.
Burning Mouth syndrome. Severe pain in mouth with bumps, gross metallic taste, cannot press lips together but have to figure outhour to relax/rest. Bedsid:Have to strain and reach for remedies every 10min: tea tree oil, vit Eoil, Orajel, gum, licorice lozenges , other lozenges, etc..
Also dvloping Gastritis again, usually lasts 2months. Can hardly eat or drink much causes pain and over acid production? Stomach aches if I don't constantly have antacids, ginger caps, milk, eat banana 2 bites every 2 hours.
SUMMARY:I AM GRUMPY!! Hope I cheered you all up! FYI :"Suggestions" of remedies for me. I usually go into a rage. I a m already an expert on most of them. I'm not buying more stuff!
My first Xmas in recent memory could hardly do nothing. Luckily hubby doesn't mind. We made it to one friends for Xmas visit. Was nice but very fraught with worry for me, ESP 1st hour don't know how I'll be and then coming home, have severe burning, anxiety at bedtime and of worse worry of relapse. Have lived
Like this for so long the panic and worry never go away. When I'm better will have to access how to go out less, body can't handle anymore.
Looking forward to connecting with support group, such great people.
Will anyone understand if I describe?
Sleep only 5 hrs a night, have to be awake in bed 5-7 hrs everyday. Sever burning of head face, chest, sometimes whole body. I mean severe! Have to reach for spray bottle, menthol cream, peppermint cream, washcloths (wt in ziplock bags) every 5 min- 15 min. No peace.
2 freezer head bands in cooler bag beside bed. Interchange each one frequently.
Burning Mouth syndrome. Severe pain in mouth with bumps, gross metallic taste, cannot press lips together but have to figure outhour to relax/rest. Bedsid:Have to strain and reach for remedies every 10min: tea tree oil, vit Eoil, Orajel, gum, licorice lozenges , other lozenges, etc..
Also dvloping Gastritis again, usually lasts 2months. Can hardly eat or drink much causes pain and over acid production? Stomach aches if I don't constantly have antacids, ginger caps, milk, eat banana 2 bites every 2 hours.
SUMMARY:I AM GRUMPY!! Hope I cheered you all up! FYI :"Suggestions" of remedies for me. I usually go into a rage. I a m already an expert on most of them. I'm not buying more stuff!
My first Xmas in recent memory could hardly do nothing. Luckily hubby doesn't mind. We made it to one friends for Xmas visit. Was nice but very fraught with worry for me, ESP 1st hour don't know how I'll be and then coming home, have severe burning, anxiety at bedtime and of worse worry of relapse. Have lived
Like this for so long the panic and worry never go away. When I'm better will have to access how to go out less, body can't handle anymore.
Looking forward to connecting with support group, such great people.
Replies
Hi Pouty!! Keep doing the journal thing! It DOES help. Sometimes, such as recently (you read my journal)....I don\'t journal for a while, and I can tell that I\'m missing something. I\'m \"stuffing\" things that I need to talk about. I have a wonderful husband, but, like you just said, if I try to explain things, I don\'t think he understands.
You\'ve had CFS for a very long time. I suppose you\'ve \"been there, done that\" with just about everything. I SO get it that you don\'t need people to tell you what to do! We all find remedies, on our own for each symptom we have and we learn how to deal with this stuff. It isn\'t easy.....not at all. We suffer SO much more than we express. That\'s why the journaling can help. We have to talk to somebody who \"gets it!\"
Sorry you have this burning mouth thing. Sounds horrible! I have no suggestions there, except to watch out for anything that has to do with licorice! (did I spell that right)....you can google licorice. It\'s bad. I think it raises blood pressure and people don\'t know that. I\'ll see if I can check it out.
As far as the forever relapse, I\'m with you on that one. I have my stuff on my dresser as well. I even have a bedpan in my room for times when I\'m extremely dizzy and hubby isn\'t home. I don\'t want to stand up and try to walk to the BR and pass out and hit my head on the floor. Easier just to use the bedpan, and when he comes home, I empty it. I can take care of myself, 85% of the time. Then there are those weeks where I\'m totally bedridden and can\'t get out of the thing, never mind get down to the kitchen for food, so I need someone \"around\" most of the time. HATE It!!
So, you are crabby eh? Well, that\'s ok! I\'m crabby too! I hear ya. You\'re sick and tired of being sick and tired. I\'m glad you wrote this journal. Make friends on here and let people know when you have journaled. You know how our brains are with CFS, we forget to look. We have to help each other out!!
Let\'s hope today is a better day for you!! Big hugs! xoxo
You are so kind and encouraging! Really helped my typical morning depression.
Oh pouty you have some really bad symptoms there, so sorry for you . I\'m wondering if the burning mouth is directly related to the acidic stomach and gastritus.Have you had it investigated with an endoscopy.? Sounds like that would be very necessary.The metallic taste may be bile reflux . Don\'t blame you one bit for being grumpy or crying your heart out having to put up with all of that.I would love to hear more about your condition and what investigations have been taken.I know that black activated charcoal powder is brilliant for mopping up bile and numerous toxins in he body.I have a damaged pyloric valve from gallbladder surgery and I suffer with bile reflux if I don\'t stick to a strict diet.I get so sick I can only eat papaya and take the charcoal.It works after a couple of days like a gem, really great stuff.As for liquorice root it is brilliant for adrenal fatigue and low blood pressure, but in cases of high bp it can be detrimental in some cases.I drink liquorice root tea to increase my cortisol levels and to stop me from fainting.I need to order some more.You said you were using tea tree oil? I am very familiar with that also, and wondering what you are using it for? Would love to hear more and maybe I will have some suggestions , maybe not.Would love to help you if there is any possible way.Keep in touch, lots of love, keep sharing, maybe some helpful ideas will arise
Thx Aussie for your warm message. Have to suck on deglyccerized licorice lozenges all the time for Burning Mouth Syndrome, recommended by cfs dr.s for mouth. I have no risk or high BP, and also all the licorice has done NOTHING for weakness or fainting feelings.
Endoscopy 2012 showed NOTHING causing Gastritis. When in relapse, my body does not want to digest, period. No food allergies. When not on relapse CAN EAT ANYTHING.
I have to remind that my first journal entry states I get very agitated with suggestions of remedies. Do not really want help that way, brings up pain and anger, spent thousands on naturopaths, homeopathy, etc... After 25+ yrs I know it makes no difference, relapses are just as bad.
Thx for being so caring..
B
That is so hard. I\'m glad on the second you were feeling better than this day. Hugs to you Pouty. ((((Pouty))))