Let go of the guilt that comes with my limitations. Not feeling bad every time I choose myself (basically resting my aching body) over any other activity.
Ensuring 100% that my son will not inherit my condition of ligament laxistity.
Finding the right pain medication that would allow me to balance my work and pain relief. Currently my mess are too strong for me to take them at work... So I suffer out my workday and run home to my meds. Less potent meds don't work, so I don't bother taking them at work.
1. That people, family, doctors and so on could understand the pain. 2. That there was a magic pill that would have some results in helping the pain and tiredness that comes with it. 3. That I could eliminate the pain and tiredness to actually do something fun with my 9 year old occasionally instead of ruining everything.
To not be a burden, too not worry that the stress of watching me decline and taking care of me will kill him long before it kills me.
To be sure that my children and maybe one day grandchildren will never inherit my illnesses and may they never know this pain, may they never live a life where you would not take your own life but if u went to sleep one night and God decided to take you home, you would be ok with it.
I would also wish for more doctors who would think outside the box bi think every hospital should be using the interdisciplinary team approach, they should all be like John Hopkins or The Mayo Clinic so that all could receive the best treatment available. So many doctors wear blinders and don't communicate with one another. This should just be the SOP!
Hard one.... 1. To be able to be active, do my housework without modifying chores and be more active outdoors. 2. Abandon the stigma associated with pain meds. 3. Be stronger to handle the anxiety placed on me by my employer!
1. To not feel guilty and useless over not being able to go to work and be a productive member of society 2. To not feel like I am a burden on my family and friends, feeling like I am whining about my pain when I'm just saying how I feel 3. To be able to sleep in a bed like I used to and snuggle up under the covers, laying down and cozy instead of having to sleep in a recliner and to be able to accomplish all of this without the aid of prescription pain medications and sleeping pills.
#1: To be able to think clearly & remember all the time, not just fleeting moments of comprehensible speech & thought. #2: To no feel the guilt of letting others down & needing to take time for myself. #3: To have Drs that understand & don't just throw their hands in the air saying "I give up! This case is too complicated and there's nothing I can do." To have yhem at least listen, try new things & communicate with one another, including Naturopathic Drs, who should be able to validate their license in NYS. Sorry I know I ranted a lot into that last one, but I have to add; finding a natural treatment option that allows me to be a functioning person in society again. To be able to work again both teaching & with animals, or even just one of them, even being able to voluteer once in a while would make me ecstatic. . To be able to walk everyday at least for a half mile or more, preferably to run again (all without my cane or walker) To take courses on Dog Behaviour & Training, so I could train Service Dogs for othrrs because they have made such anhuge difference in my life.To have the stregth to hold mu 4 mth old nephew for more than jist a few minutes like once a mth, if that. To be able to to watch my niece & nephew regular basis & not just on my rare good days that are few & far between. Sorry for my rant. Thank you for this wonderful outlet. Good luck & Gentle hugs to everyone! You're a Chronic Pain Survivor & you're not alone :)
If I had a magic wand, hmm. That's a hard one to answer but here goes: One: To be able to get through an entire day pain-free Two: To be able to sleep uninterrupted for an entire night without taking medication Three: to be able to function normally without having so much pain.
(1) To be able to clean my house in one day, and not wind up in the bed for 3-4 days afterward. (2) For my Dr's, to really take time and listen to my concerns and not blow them off. (3) For my family and friends really understand what I am dealing with on a daily basis, not think I am pretending to hurt to get out of doing things or going places.
Wow, reading your wishes really touched me and reminded me of my personal suffering (luckily I have significantly less pain today than years ago). It also makes me angry and frustrated: We are living in the 21st century and we have all this innovation around us, yet chronic pain and the associated conditions are still a huge mystery / misery. Your wishes are a huge motivation booster for us to keep on going improving our app and trying to help you. We hope that in the near future we will be able to help you with at least some of your wishes. Thanks a lot for sharing!
I would like to share my wishes with you:
1. I wish I would have found the 3 doctors and therapists, who showed real interest and understanding and who were able to help me, much earlier. That would have helped me to save years of suffering and a lot of money (spent on useless therapies). 2. I wish that chronic pain would be something that everybody knows about. This includes many doctors who today still have no clue about chronic pain (I have personally seen almost 20 of them). They postpone diagnosis and real treatment because they want to save the insurance money (or they are ignorant) and they will tell you “it will get better by itself, in the meantime take this pain killer”. If you hear a doctor say something like that, run! Every pain expert know that you need to start treating pain as quickly as possible and not just with pain killers but with the full package: physical therapy, exercise, meds and maybe even a pain psychologist/coach (not because the pain is imagined but because coping with pain in daily life is a huuuuuge challenge). A good thing to ask your doctor is “What would you do if your son/daughter had this kind of problem?”. This helps to generate empathy. Then there are friends, family and colleagues who don’t know what it feels like to have your life dominated by pain. This also made me feel guilty, angry, sad, misunderstood, etc... 3. Last but not least, I wish I would have changed my attitude much faster to “I need to help myself, I need to learn to live with my pain and try hard to get pieces of my life back, step by step”. This attitude in combination with the right doctors and therapists helped me to slowly get out of the vicious circle called chronic pain. Before that I had a passive attitude and was hoping for a magic pill or magic operation which would make the pain go away. Did not happen.
I am very grateful that I feel much better today and I have dedicated my life to helping other pain patients.
I have Rheumatoid Arthritis and from what I understand I've had it most of my life but it was triggered due to extreme work related stress.
If I had a magic wand I would like to go back to when the stress started and correct my path, my decisions. I loved my job and would like to be there now but given the chance I would walk away to save my health.
I would also like to correct a few of my decisions that have resulted in me not having enough money to retire and living a pretty lonely life.
Not sure I would need a third wish if I was granted those two.
That was fun and for a few minutes the pain and surcomstance were gone.
Thanku for ur kind thoughts Daniel. I have fibromyalgia, M.E./CFS and non-epileptic seizure disorder all trigger by a traumatic brain injury as a toddler. I have been through the worst of the emotional journey to a place were I realised I was not going to b able to follow my ambition to b an academic after having to quit half way through masters degree. But I did realise if I didn't accept that I would just end up bitter and twisted. So I found new goals, more achievable ones like a home study diploma in drawing and painting as well as making cards for research charity. My 3 wishes would b; 1. That children I hear of being diagnosed today will have a cure. 2. For people, including medical, would b more aware/understanding and would see the way we all suffer despite our positive attitudes. 3. For meds or treatments to b available that allow us all to function as well as we possibly can without the unpleasant side effects. Love and good wishes all especially those of u who work so hard to create and maintain CMP. My gratitude to u xx
Wishes (if I was only allowed 3, I'd like 4): 1. To find the right doctors who can lower my pain, diagnose my condition and be fully understanding in helping me to cope etc. 2. For my doctors, family, friends, school etc. To understand what I'm going through instead of saying "you're not in that much pain, you'd be crying" when, in reality I do cry, i cry myself to sleep. 3. For everyone else to never get a pain condition and if they did for research to have already been carried out so that their pain can be del with quickly
And if I could have a 4th: 4. To not remember everyday in pain and every acute episode (acute episodes are 10/10 pain and muscle spasms) I have. They haunt me, I remember every acute episode and each one individually is traumatising enough yet alone all of them.