Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Some may find this a rather dark,expressions of emotions but now that I am in the DS groove and have new friends, I feel there is a place even for my most discouraging thoughts.
I WISH FOR 2013:
1. To be able to make a small meal, sit down and enjoy without feeling weak, nauseous and panicky as to how long I,can stand up and how long before I,start feeling sick and have to scramble my stuff and get to my bed
2. To be able to meet a friend in a cafe and converse for 10 minutes without feeling like I'm having a nervous breakdown due to all the stimulation (including the blasted music)
3. To be able to make a 2 minute phonecall without completely losing it because not only am I stressed on the phone but have to worry about head pain and nausea that sends me to bed for 2 hrs
3. To be able to sleep more than 5 hrs in a 24 hr period
4. To be able to meet with a Dr and remain calm without thoughts of eliminating them.
5. To go one hour throughout the day without severe and total mouth pain to the point I am on the verge of tears
6. To have 3 sips of tea without feeling like my head is going to explode
7. To be able to shop for much needed p.j.'s and a winter coat (Have not been able to do, I last about 10min in a store on a good day)
Sometimes I just need to,be down. All my life I've been told to suck it up. Well I'm giving myself permission to state the frustrations clearly. When I feel better I am quite the creative problem solver, however my nerves have worn thin this past year and I hope I can continue with this skill
Thx for listening.
I WISH FOR 2013:
1. To be able to make a small meal, sit down and enjoy without feeling weak, nauseous and panicky as to how long I,can stand up and how long before I,start feeling sick and have to scramble my stuff and get to my bed
2. To be able to meet a friend in a cafe and converse for 10 minutes without feeling like I'm having a nervous breakdown due to all the stimulation (including the blasted music)
3. To be able to make a 2 minute phonecall without completely losing it because not only am I stressed on the phone but have to worry about head pain and nausea that sends me to bed for 2 hrs
3. To be able to sleep more than 5 hrs in a 24 hr period
4. To be able to meet with a Dr and remain calm without thoughts of eliminating them.
5. To go one hour throughout the day without severe and total mouth pain to the point I am on the verge of tears
6. To have 3 sips of tea without feeling like my head is going to explode
7. To be able to shop for much needed p.j.'s and a winter coat (Have not been able to do, I last about 10min in a store on a good day)
Sometimes I just need to,be down. All my life I've been told to suck it up. Well I'm giving myself permission to state the frustrations clearly. When I feel better I am quite the creative problem solver, however my nerves have worn thin this past year and I hope I can continue with this skill
Thx for listening.
There's nothing wrong with having a little pity-party now and then. It's so much work just to manage this illness, it's physically exhausting and emotionally draining.
It's good you know that for the most part, you persevere and deal with this, it's okay to let go sometimes and just let yourself feel the bad stuff.
Hopefully, tomorrow will be a better day.
My wish for next year is to dance at my daughter's wedding. I've got 10 months to prepare......I'm determined.
Hugs,
Genie
First on your list (after pjs and a coat) - a tall swivel stool for by the stove. I have one in my kitchen on wheels, I use it at the counter, to cook and to wash dishes.
As for that shopping - that very large monster of an online store that starts with A is my version of the local store for most stuff - and I'm plus sized so I shop at onestopplus.com for all my other clothes. They have stuff down to 12w.
I totally get the overstimulation! Have been doing some research on something called sensory gating. If someone else here posted it I am not trying to take credit I truly don't remember how I came upon it. It's very interesting if you are up to reading it sometime. http://www.cortjohnson.org/blog/2013/07/28/japanese-sensory-gating-stud-reveals-profound-cognitive-deficits-present-in-chronic-fatigue-syndrome/
1. Get moved to the town my daughter and grandsons live in.
2. Get to the pool twice a week to soak my body in the 88 degree water (also close to that town).
3. Not let my birth family drama make me so stressed I crash like this year.
4. Drop 30 lbs. (hoping swimming will help, already had bariatric surgery and lost 118 lbs, but gained 30 back during a year of hell with gastritis)
5. Ease off my need to be in control and my fear of what will happen if I am not.
Um I just fell asleep at the keyboard. time to go wait for the stinking cpap machine to warm up and nap...
" dark" Side is part of me I feel I should embrace also. (trying to use it to inspire my stand up comedy writing). Actually, sit down, you know what I mean! LOL