I m angry I m am so angry at my body I m crying at a drop of a hat because I...
I was crying all the time too - you may have a little depression happening, I'm not a depressed person in general but dealing with chronic pain is depressing - reactive depression. I'm on some meds for it now and I'm not crying at the drop of a hat now.
Have a chat to your Dr
Good luck and remember we're all here to chat
I go through this also. But the bad days always pass and good days come again. It's just not as often as it used to be but I still have decent days and that keeps me going. This syndrome severely sucks but we can rise above the disability and pain and make something good come out of it if we keep proper perspective and don't give up. I found that what helps the most for me is to help someone.... anyone. In anyway I can... I get out of myself by serving others and it helps to keep the depression at bay.
I couldn't stand for more than 10 minutes, grocery shop or drive for six months. Once I got the POTS diagnosis/medication, things got better. It did take a while to regain my strength. I'm functional again but take things slower. MCAS flares have caused me a few setbacks. I think the adrenaline rushes from the POTS can mess with your emotions and anxiety.
MCAS is probably the next dx but she isn't ready to search for that one.
Hey there, please don't panic, I can't say if it will get better or not, I don't even know what I'm talking about with own body, I used to be n avid fell walker and runner, I was a swimmer, I ran as in street running, I rode my horse, I walked, and ran everywhere, cycled twenty miles a day, I haven't a prayer of any of that, I know it hurts, I still hurt I can't share that with my daughter, but we adapt, we don't think we will, but we do, I am lucky to get a ride to a supermarket and manage a short trips without pain that intense I am nearly vomiting, I am so desperately depressed again just now, I have no answers for my issues, other than here we go again, but I know, this too will pass, if I recover at all or not I don't know, but I do know, I will adapt, hell we have faced and survived so much, we grieve for every lost function, hobby, time, but we cope, we carry on and we will do so for many years, hang in there, it is always darkest before dawn, and the shiniest diamonds have had to have the most polishing, you are stronger than you will ever know. X x
Adding pepcid to my allergy medicine helped.. Reading Dr. Afrin's book helped me understand MCAS. the Mast Movement FB group is great.
Thank you. I've been a fibro warrior so long. So I understand. I appreciate your words. I'm sorry that we are in the same boat but at least we aren't drowning! :) hugs!!
Its normal to go through a grieving process when dxd with a chronic illness. I wish Drs told people this. Its worse, in some ways, than grieving for someone passing away - because we dont know what the future holds. Its hard to grieve effectively with so much uncertainty.
But allow yourself to grieve - you are allowed to feel sad, to feel loss. Even if next week youre feeling fabulous.
We won't drown, we hold each up, if you want too please add me as a friend, I'm always happy to chat if I am able and have the energy, you are not alone, we can fight this crappage between us x
anger is part of the grieving process, and while a formal diagnosis can be wonderfully affirming (especially if one has been ill or in pain and dismissed for years), it can also trigger grief, because it's the loss of "this is just all in my head and if i can just figure out the right thing to do, i'll be fine"
and that's all normal.
you are _allowed_ to be angry and/or sad and/or any emotion you feel and need to process.
but also with dx there are sometimes thing that help, especially with pots and mcad.
(and for me, learning that i DO have eds and that it's a genetic collagen disorder helped me to be gentler and more patient with my body in some things -- like realising it's not my fingers fault [and not my fault] that i can't do th ings like use manual can openers, open stuck lids, carry some shapes, etc. now instead of beating myself up, i find something to use as an adaptive aid.)
Sorry you are having a rough patch. I am as well right now. Seasonal allergies are always a huge trigger for me. Right now you need rest and gentle movement. Hope you start feeling better soon!