Good evening, my dear family.
I’m sorry that I disappeared back into my shell. Sometimes, we all need to take some time to hide in ourselves to learn. To heal. To just let life be because sometimes it’s just too much. I feel like I finally found the “too much” in my life when I broke my wrist and everything that came after that.
This post will be real. I will hold nothing back and I’m going to close my eyes and let myself fully feel in order to give you guys the best of me right now. I apologize if I offend anyone — those aren’t my intentions. But I think that sometimes closing your eyes, to stop being such a picky editor about everything you write make the post honest. Blunt. Proof that we are still in this and fighting without holding back for the sake of anyone.
Since I broke my wrist, I had a lot of downtime. Happy to report that I’m out of the cast, things are moving (in the right direction, of course) but I’m still sore every day. The pain came become pretty unrelenting. An interesting parallel to those of us with fibro — my arm doesn’t like grossly broken anymore (I’ll spare you those pictures), but I can still feel the pain as my nerves try to balance themselves out. Yesterday, my hand (pinky and ring finger) were numb and tingly for almost 12 hours straight.
A couple of weeks ago, I was home with my family before my dad left to go back overseas for work and I walked the pups with mom one night. I’m not sure exactly what happened, but I was limping by the end of the walk. Two weeks later, when I finally decided that the excess swelling wasn’t healthy and that I was still in pain, I finally had my foot looked at. I tore the tendon on the top of my foot — I tore a freaking tendon while I was walking. The doctor I saw said it wasn’t bad enough for surgery, so he put me on Prednisone (dun dun DUN) and said it should heal itself once the prednisone allows the swelling to come out. For those of you who don’t know, the Hulk ain’t got shit on me when it comes to this steroid. I haven’t been on it for a long time, so as soon as that first dose hit my system, I think my eyes partially bugged out of my head and everyone knew what was coming. I’m irrational, I’m emotional, I’m mean and I feel like I have no control over it. I feel like I am truly fighting a demon inside of me that wants to be let out, but I know that if I start allowing the prednisone to win my emotional battle along with my physical battle — that it would lead to no recovery time because I don’t think I’d have anyone to recover with. I don’t not want to be a constantly angry person. I know what anger and misunderstandings look like and I don’t want to be that person.
One of the things that I think is so strong in my own struggle is that sometimes, I can try to push my pain aside or ignore it (knowing full well of the hell I’ll have to pay later) just to help others that are sick. My gift, in this 8 year journey, was being trusted with the gift of compassion. Empathy. The desire to want to fix anyone and everyone.
“Compassion hurts. When you feel connected to everything, you also feel responsible for everything
And you cannot turn away
Your destiny is bound with the destinies of others.
You must either learn to carry the Universe or be crushed by it.
You must grow strong enough to love the world,
yet empty enough to sit down at the same table with its worst horrors.”
– Andrew Boyd
I’ve noticed lately that I’m back making others struggles my own again. Not in the sense that I’m running around and say “OOH I HAVE X Y AND Z BECAUSE THEY DO TOO!” (Big spoonie no-no) — but rather I say something like “I can help you, fallback on me, you’re not alone”
And those words, those promises, leave alone. You are put into their battle path. Once the agreement is made, you can’t turn back. I do not turn my back on my friends and my family (unless there are some legal issues, blah blah, you know what I mean).
But in doing so, sometimes you get the blunt of the sword. You are the enemy now instead of the shoulder to cry on. We give everything we have to the people in our lives. Everything. We would push all of our energies to save the people around us because we know what it’s like to not have anyone pushing for you.
Sometimes, just sometimes, I think it would’ve been better to leave baby in the corner. Let her find her future on her own and see how many people find that inspirational. But I’d always be the one pulling baby out of the corner. “Embrace yourself. Be strong. Be confident. I know you can do this” — the words are the right words to say, but they’re hardly words that I believe.
I believe that even if Mayo does find something wrong with me, that it will not make my life honky doory. I know very well that with any diagnoses I receive, it will be work to get their long-term plan in place and that my life sill not become substantially better in the week plus I’m in Mayo working with those doctors.
Now that you know a little bit more of what’s going on, here’s how we go from here…
I head to the Mayo Clinic in less than 3 weeks now to work with a team of doctors to try to figure out what’s going on with me. My doctors, aside from my PCP who has been a GOD SEND, have all said “we’re out of options. Tell her to learn to live with the pain.” I wasn’t not given any recommendation as to how one is supposed to “live without the pain” when the doctors have not listened to you or even helped with your “coping mechanisms” that somehow will save the rest of my life. Step one: believing in yourself when no one else does. I’ve been hearing for years that I should go to Mayo and when they finally accepted me as a patient, it’s turned into “oh shit, she was serious about that”. Yeah, I was serious about being healthy, or as healthy as I can be because these last two months have me reconsidering what Hell is actually like.
A vacation is being the family over a holiday and I’ve shared with multiple members of the family that I am less than thrilled to go. Years ago, I went to Rochester, NY with my big sister to visit our brother at college. The day before we were supposed to leave, I started feeling really sick. My sister had to cut her activities short so she could drive me to the ER — where the staff gave the order of “give this girl medicine and just get her home.” I was apparently a less than ideal companion and my sister dropped me to my parents and a sentence of “get her away from me” and then didn’t speak to me for a couple of days.
So get this. The bahamas over thanksgiving. I DON’T KNOW WHAT TO DO. That will be 3 weeks before my first finals at the Graduate level and that just screams “STRESS” and I’m not going to be doing cartwheels, running marathons the day after Mayo. That’s just not realistic. But my concerns were pushed aside. Because I shared my concerns about the travel and uncertainty of the trip and how, if i someway managed the flights, I’d likely be in the hospital when we get there — and that’s thousands dollars of debt because of me and a very large potential of ruining vacation for the entire family.That being said, i was told I was being far too negative and that I was just asking for it at this point.
Right now, I can hardly walk. Being in compressed air is probably not going to go over well. I’m going to get off of that airplane and be in an automatic flare when we walk off — this is not being negative, this is my reality. This is the reality that you and I face every day, but to have your family resort to name-calling and an undertone of guilt.
How do you handling travel with Chronic Illness? How do you explain what we feel to family members because they’re just not getting.
I mean, I say “I’m stressed out about the entire trip, but such is life.” and then just blowing it off. I’ve tried explaining it to them and I think I just talked to a brick wall. My mind was made it for me after that and I received tickets to get the bahamas and to get back.
I’m frustrated. I’m exhausted and haven’t received more than 3 hours of sleep in the last week and I’m going to snap soon because of these medicines and the added stress.
I’m sick of being the fall back person in life. I hate that I’m capable of being that person because I’d rather the finger be pointed at me because I’m used it than have it pointed at someone else who isn’t equipped like we are to face the ridicule, humiliation and guilt.
I wish that this world could understand that we understand our body better than anyone else. If I’m telling you “I think that’s too much” then PLEASE listen to me. Don’t tell me I’m borrowing trouble. Don’t tell me that I’m a negative person. I understand family time. I understand the message behind it and that I have a lot to be grateful for — I just wished I was listened to without judgment and someone tell me that I’m just thinking negatively.
Am I overreacting? I was really hurt by what was said — I’m trying to forgive the names that were called, but I face so much pain every day that there was no other way for me to do it.
How do work with your family and the people in your life who think that you’re a “negative Nellie” when you’re just trying to explain how your body works and why the travel is so hard on me and I’ll be prepping for finals.
I don’t think that spite was intended, but really? Do you feel the pain we feel every day? Does it radiate throughout your ENTIRE BODY, relentlessly and yet, society expects us to be normal.
I’m sick of putting on a brave face for people who are just going to treat me like this. I do my best to not intentionally hurt them by letting them see my pain and my struggles, but then everything is turned around when my health is an inconvenience.
I’m tired, I’ve probably slept 14 hours in 10 days. I’m so tired, I’m so frustrated.
But we can’t just give up, can we? There are too many people who are counting on teaching them how to be strong. There would be a lot of people disappointed in us for giving up because we just can’t handle it one day and need a break.
I’m frustrated, family. Do you have any advice to get people to listen and maybe even understand?
I need your help — tips/tricks — how do you help them understand. Especially when they think they already know but clearly treat you differently.