Rather than be loooooong and drawn out, ZZZZZZzzzzzz, I was wondering how I could give my healthy friends and family an understanding of M.E that would hopefully have an instant impact in a quick but fun way…..er…yeah ok, I use tha term “fun” loosely.
It’s often hard for us to put into words, and we don’t have the energy or brain clarity to do so. We don’t choose to have ourselves and our lives consumed by this extremely complex and frustrating illness but unfortunately every waking minute, every decision we make is dependent on M.E, and not us just being bloody awkward. So let the game begin.
Congratulations you have just been given 5 points woo hoo! Unfortunately for you points don’t mean prizes, boooooo! They are energy points. Some people with M.E start with nil point, nada nada, zero, others might have more than 5 but for this games sake I’m giving you 5…..all heart me ;)
So it is Morning, you have sat up in bed with 5 points to last the day. Everything you do costs 1 point, and you have to choose from the DAILY list below what to spend your points on. For every thing you choose off the daily list , you also have to choose a symptom from the SYMPTOMS box before going onto your next daily choice, then choose another symptom and so on and so on.
With every point you use,meaning less energy and every symptom you gather, meaning feeling more poorly as you go, it will determine your next choice ….I'd like you to really imagine this as though it was your daily reality, because this is ours......if it gives you a sense of understanding into our world, of how we have to constantly make choices, try and prioritise, and why we are often left so angry and frustrated then i've achieved what i hoped to achieve, please feel free to share it. Thanx for taking tha time to play, Stay blessed, Back before Elvis :) XXX
Right..ready to play? .... off ya go….
Exhaustion... Memory Loss....Headache
Nausea... Heart problems...Muscle spasms
Disorientated...Blurred Vision....Slurred speech
Breathing Problems....weakness...Unable to swallow....Swollen glands....Brain fog (inability to think clearly)....Nerve pain.....Burning skin
Extreme body pain...virus...Ear/eye sensitivity
1. Get washed 2.Get dressed
3. Clean teeth
4. Comb hair/shave
5. Eat breakfast
6. Make important phone calls.
7. Make/reply to emails
8. Go to the bank/Pay bills etc
9. Drive to supermarket for wkly shop.
10. Make a cup of tea/coffee
11. Fill in important form to council/bank/insurers etc..
12. Hoover house
13. Dust/polish house
14. Clean floors/Toilets
15. Eat lunch
16. Phone/skype friend
17. Do laundry
18. Change bed sheets
19. Watch TV
20. Read Book
21. Facebook/Twitter/other activity
22. Meet up with friend/other activity
23. Eat dinner
24. Get undressed & into Pj’s/nightie etc25. Put bins out