Every year my family goes to the Jersey Shore with several other families. We rent the same house on the beach and it's always my favorite part of summer. I have been looking forward to this vacation for months. I was finally going to get out of my house and spend time with friends--do something fun for a change. Unfortunately my hip and knee decided they didn't want to be there.
Last week my groin pain came back and has been getting worse. It's the first time since I woke up from surgery that I have had (left) hip pain. Of course my knee pain decided to come back at full force as well. During the three days I spent at the shore, I tried to keep up with my friends and relax but I just couldn't do it. Nothing about the trip was relaxing. I was in pain the entire time. I couldn't keep up with everyone. Just getting on the beach was exhausting and painful. Once on the beach I would sit and watch my friends spend hours in the ocean (my favorite part of the beach). I was told that I am high maintenance and endured comments about how much of a spaz I am and how I always have something wrong. I tried to laugh it off but I am way beyond that. I tried to explain that it's not my fault that I have had so many surgeries--that I can't always control it. Had we known I was born with EDS I probably never would have done gymnastics and never would have had all those surgeries. My friends wouldn't consider me a "cripple" and I wouldn't be considered high maintenance. This week, I felt like I couldn't even say that something was hurting because I'd get another comment thrown at me. It's so frustrating because they don't understand what I have been through, how much pain I have been in, and how hard it has been to accept and live with everything that has happened to me.
I have tried to be positive throughout this experience-to learn from it. I still think that I have been handling everything pretty well..all things considered. I know I will come out of this a better, stronger person--I just need to remind myself that I am allowed to breakdown sometimes! I am allowed to feel sad about the things I am missing out on and the things that I will never be able to do again--just as long as I don't live everyday in self pity. I guess I just wish that everyone else could understand--but I can't hold anything against them. Unless you are dealing with this personally-it's hard to fully grasp the impact this all has on your life. I am very thankful that I have a supportive family. I am also very thankful for my Hip Chicks. It's comforting to know that there are others who are going through this as well.
I hope that by next summer my hip nightmares are over and I am able to enjoy a full week down the shore with my friends and family.
"You can't always decide what happens to you, but you can decide how you react."
I'm glad that you were able to go to the beach this year, but wish that it had been a more enjoyable experience for you. It's difficult to stay positive, but you're doing a wonderful job. Keep it up!
ReplyDeleteThanks Mary : )
ReplyDeleteI hope your recovery is going smoothly!
Hi Jill,
ReplyDeleteSo sorry to hear you are flared up again. Has anyone looked at your sacro-illiac joint to see if it has slipped out of place? Your groin pain sounds so much like an SI joint sublux, which is very easy to fix and provides pretty quick relief. A good PT can put you back in place and give you a belt to wear.
As always, beware of all the surgeries. EDSers tend to have too many failed surgeries - they may provide only temporary relief before the tendons/ligaments stretch out again.
My heart goes out to you. I completely know how you feel when people say things you know are untrue and stupid but it still hurts. "I was told that I am high maintenance and endured comments about how much of a spas I am and how I always have something wrong." and "This week, I felt like I couldn't even say that something was hurting because I'd get another comment thrown at me." I live with this at 38yo too. Finding a way to protect your heart from insensitive people will go a long way towards your own happiness. I'm still learning.
Keep up the great work and be good to yourself.
gentle hugs,
elise
Hi Elise!
ReplyDeleteI have had SI problems since I was 13 so it's definitely possible that they have slipped out again! I see my therapist on Friday and will mention this to him. Thanks for the suggestion. I am hoping that I didn't tear the labrum when I fell in March--meaning another surgery.
Thanks for your words of support. I don't hold it against anyone-it's just hard to take in sometimes. I try to laugh it off and not let it effect me but that can be difficult.
: ) Jill
Jill -- I am so glad you got to be at the beach but so sorry you ended up in so much pain :(
ReplyDeleteI am aghast that friends would call a girl on crutches "high maintainance" and a "spaz"???!!! I guess that unless they have gone though something similar, its hard to understand chronic pain, the stress of multiple surgeries and the constant accompanying anxiety. I feel very angry on your behalf that you couldn't even mention you were hurting to your friends. They haven't a clue as to how incredibly brave, determined, graceful, patient and strong you have had to be. Have you ever considered sharing your blog with some of them...?
I wish you nothing but good health - even if it seems to be taking one baby step at a time.
Best,
Ivy
PS -- love this quote: "You can't always decide what happens to you, but you can decide how you react."
Hey Ivy!
ReplyDeleteThanks for the kind wishes and support! Us Hip Chicks have got to stick together during the tough times.
I don't hold anything against my friends. Like you said, it's really hard to understand chronic pain when your not living in it. It's also hard to understand how a 20 year old could have such complicated hip issues. Most people still believe that only "old" people have hip problems. If only they knew.
I don't know if I want them to read my blog. It's hard to explain because one of the reasons I started this was to keep my friends and family updated. I just don't think anything would come out of it.
I really hope you find the answers you're looking for! I am praying that you are able to find relief soon and are able to start making steps towards living a pain free life : )
Positive thoughts your way!
Jill