Not that I am looking for attention or sympathy…BUT…
I have always had flat feet and 3 weeks ago, I had one of my feet operated on to fix this. Very invasive procedure (5 hours) , 5 incisions that were 4 inches long where they insert cadaver bone, slicing of heel bone to reposition it, slicing of achilles tendon to lengthen it to accomodate longer leg, yada, yada, yada.
I have had a cast for 3 weeks and will be non-weight bearing for 6-8 weeks and then partial weight bearing for 8 more weeks.
Why do I mention this here? Because I have received more attention/sympathy with this thing than the entire 4 years that I have been dealing with chronic 24/7 MAV issues, dizzies, light-headedness, foggy head, tinnuitis, light sensitivity, abhoring malls and shopping, (you get the idea!)
I think everyone on this board would Amen this…I could handle having a foot amputated vs dealing with this “non-visible illness” for 4 + years.
Pain is tolerable…24/7 foggies is not
I think all of us on here would welcome most anything vs what we are dealing with (that may be an exaggeration, but you get the idea) We just want an “end date”…and that is what is so damn frustrating. There is no SET “end date”. The “end date” will be when you finally resolve the medical mystery of MAV and figure out what works for you. Anyway…I wish people could see our “pain” on the inside vs. seeing the visible cast on the outside…NOT FAIR!!! (I know, I probably sound like my little 10 year old daughter…waaaaaaaa )
I totally get it. Yesterday I told my friend when another episode hit when we were out shopping.If it was my hip or another body part I could deal with it. I’m an old dancer and am used to physical pain.A lot of my friends are having their hips replaced after years of dance abuse.Even after what I see they go through at least there is an end in sight.
Very interesting about the cadaver bone and the surgery,I hope you have a speedy recovery and have a great physical therapist.
Good luck!
I’m sorry to hear about your surgery, and hope you are fully recovered from your operation soon.
But I’m much more sorry that you have MAV, and totally get what you are saying about the invisibility of this, and how much harder it is to cope with/how it affects your life so much more. I’ve made quite a good recovery, but realise I will probably never be 100% ok (though it’s surprisingly hard to write that down as I am having a hard time accepting that!), and I don’t know how many times I have tried to explain my condition to people who just don’t get it at all!
Wishing you all the best with getting your MAV under better control very soon.
I wish you all the best recovering from the surgery! I totally get what you mean - it’s the classic ‘visible’ vs. ‘invisible’ nature of the problem, eh? You can’t see MAV, so it can’t be that bad, right??!! There’s no visible suffering - the internal battle that rages 24/7 as you try and hold it all together mentally, emotionally, and physically - all that is hidden. My Mum always means well, but it doesn’t matter how many times I tell her, the conversation will always go like this:
Mum: “How are your dizzy spells now”?
Me: “Not much better, really - but they’re not spells - unfortunately, the dizziness is always here and never really goes, it’s 24/7”
Mum: “Oh, that’s a shame, etc…”
…fast forward to next time we meet…
Mum: “How are your dizzy seplls now”?
Me: “Not much better, really - but they’re not spells - unfortunately, the dizziness is always here and never really goes, it’s 24/7”
Mum: “Oh, that’s a shame, etc…”
…fast forward to next time we meet…repeat ad-infinitum…
It is like the movie with Jim Belushi (I believe) called Groundhog Day…every day seems the same and nothing much changes :?
As God is my witness, when (not if) I am feeling better from this junk, I will appreciate every day I am alive and have empathy towards others dealing with chronic illnesses.
24/7 means 24/7…it does not mean that we all get a reprieve when we go to work or when we are out on a family outing. It means every day, every hour, every…
The 'ol saying “that of which does not kill you will only make you stronger” pertains to us. Apparently, we are going to be pretty damn strong
I like a quote from Patti Lupone,the actress’s autobiography. She said whatever doesn’t kill you makes you stronger but not before it almost kills you first!
I swear I feel like smashing my head into a wall to see if that will stop this rocking!!! When I’m moving I’m fine, when I’m still, I’m in the depths of hell.
I completely understand! It’s that whole “but you don’t look sick” thing. Frustrating. My husband has been more sympathetic this week however, than he ever has been in the 3 or so years dealing with this. That’s because he is experiencing it first hand. He had to fly across the country on business 2 weeks ago and when he got home he had the dizzies. The first few days he could hardly do anything it was so bad, and man was he a complainer. :lol: They have gradually gotten better but he still has them off and on even today. He commented to me about how horrible it must be to have this all the time. I told him "You only have the dizzies. Add the occasional nausea, anxiety and memory problems and that’s when it becomes horrible. Wishing everyone around us could also experience for just a moment what we go through in our lives daily.
Hope your recovery is going well and that it is a speedy one.
I agree with everyone. Despite having had migraines for over 25 years, including chronic episodes for 10 years, where headache is pretty much the only symptom I DON’T get (or mild enough it’s not crippling) my family still ask about my ‘headaches’. Sigh.
I know what you mean. I don’t have flat feet, but I have a seriously injured ankle/foot, that I am told will require work about once every 10 to 15 years. I was on crutches for 6 months the first time around, and have had two surgeries since the initial injury.
People can see the cast, and the crutches, and they go out of their way to help. The cast and the crutches are much easier to deal with, I even taught myself how to play hacky-sac… on crutches. I was quite the spectacle at the park balancing away on my crutches, kicking a little 2 inch bean bag around.
But when those same people see me fall, they think that I am faking it to get out of doing something.
Man, do I get it. I’ve been back at work nearly two years since being totally disabled for most of a year. My coworkers sometimes say, “but you’re totally normal now, right?” Yeah, sure.
But I cannot say how grateful I am for every day. My coworkers have also noticed that I’m very happy and rarely complain. They don’t understand why I’m so grateful. I feel really lucky.
)
