.Thanks Veerla - great idea. Great post!
1. I am experiencing flare ups
Minimise my triggers - heat or cold. I always opt to stay cold despite it also triggering EM flares and Raynauds. Its the lesser evil.
Minimise other triggers I know affect me - , fatigue, exertion , stress(pretty impossible)- through rest/sleeping
Cold bath, wrap damp cold bed sheet around me (naked), and lay on bed under cold air fans on full blast. The dampness retains 70% more chill.
Frozen gel packs wrapped in towels . I never ice though
Smother myself in lidocaine gel
Mostly i can doing nothing and cope by drugging myself out of it with morphine/sleeping tablets
2. I am feeling down/lonely
Try to accept that today is a bad day- however hard.
Prayer- Read one of my inspirationals ,which remind me that I am never alone:-)
Mostly, I drug myself out of it and sleep - have to be truthful
Call my mum or one of my besties(but when we are down we tend to isolate ourselves even more)
Come onto Bens friends LWE community - you are my EM family. Always someone to share with or email
Phone one of the 'blessings' in my life - New friends all over the world who really care about me. I never would have met you without having EM.
Allow myself to feel sorry for myself and cry. Crying is good- releasing all that negativity.
3. I feel my pain is starting to get worse
Minimise triggers - heat/cold, fatigue, stress(hard to do), exertion
Cold bath - naked get under fan
Drugs, drugs, drugs. Drug myself up and knock myself out - sleep
4. I have to explain about my EM/EM related condition to ...........( Job, friends, family, acquaintances: all require different information so please differentiate )
Found EM so impossible to explain so I frequently dont bother and just say horrible rare widespread pain disorder. Maybe i should type up a list like a business card to hand out lol! However, I have TEA brochure (that I downloaded ) and 2 research papers that I hand out to whoever seems interested or cares enough to read it. Once they see the photos or my flaring - sort of hits home. Man on fire syndrome + frozen man syndrome= pain, pain, pain . Think people get it.!
5. I want to do ............ but I cant (Name activity)
Disabled and exhausted by EM so pretty impossible to do anything. Had to accept this 'new identity' but I can tell you its hard and I ......hate it!.
I want to have ' life' as I knew it ....but I cant - e.g. work, travel, holidays, go shopping, drive,exercise,walk, socialise, write,have hot bath...so many things.
Try to focus on doing what I can from my bed - internet, phone, read - I type with one finger.
Believe in hope and miracles
6 .I dont feel supported
Truthfully, I dont think many EM'ers feel that well supported, I certainly dont. Rare disorder which is terribly isolating.
Log onto LWE community, TEA and FB sites .
I volunteer to offer support to others - ends up being reciprocal.
Raising awareness is so important.
7. I feel like going crazy both physically/mentally due to pain
I am now crazy! Border on hysterical somedays lol! I scream, I cry.
Take a sleeping tablet - knock myself to sleep
8 .I cant relax due to my pain
Constant state of anxiety due to autonomic dysfunction is part/parecel of this syndrome. Drugs, drugs, drugs and knock myself senseless
9. I have a Dr appointment but dont know how to prepare myself (e.g. what to ask)
Download information for new members off this site
Print off TEA brochure
Take photos of flares
Pain diary and symptom diary
Write everything I want to ask/say down
Take family /carer or friend with you for support
10. My Dr is not supportive of my desire to make changes in my medication
Take all of the above- download information, photos etc...
Research articles on that medication
Evidence of clinical trials
Scream at him and get labelled hysterical and crazy lol!
Threaten to complain
Find another more compassionate Dr (not so easy)
11. Add other suggestions, we tips, questions
Will add later date