As a “sick” person, I have had to rely on friends and family A LOT. Way more than my comfort zone allows, and my pride permits. But regardless I’ve had to learn to suck it up. While ALL of the help and support is is amazing, I get left with this sense of guilt. Guilt perks its little head up in small places, like my surgery being scheduled on my parents anniversary, or my sister having to find a late night babysitter for her daughter to take me to the ER. I know that these people do these things because they want to, even need to, but there is still the overwhelming amount of guilt that comes along with being sick and having a chronic illness. Its feeling like you can never repay those people for their help. Its feeling like you never want to ask for help for anything extra because they have already done so much for you.
Guilt is being 26 years old and still needing your parents to help you with your bills, because your illness got you fired from your job.
Guilt is your 83 yr old grandfather shoveling 10 inches of snow in your front yard.
Guilt is borrowing time, or money or help, full on knowing you’ll never be able to repay that.
Its something you try not to let get your down, but its always there. I try to “give back” by volunteering and helping out with my abundance of time. But I know that doesn’t directly benefit those who have generously helped me. After all, thank you cards only go so far.
Other than showing gratitude, I feel like there isn’t anything you can do. I know some people..( ahem, my mother) just like to be able to help. She likes when shes needed and when she can help. But I just wish I could write you all a giant check, or send you all on cruises (except my dad cause hes terrified that people don’t come back from cruises) or do something to make your lives easier in the way that you’ve all made mine.
This is horrible writing because its flip flopping between being directed to certain people and to the internet. But I guess what I’m trying to say is that we all have guilt about being sick. Whether its money, or time, or help cleaning our houses, whatever, its makes us feel guilty. There is a certain level of accepting that, but I think if you just always remember what other people have done for you, and show them you’re thankful, that can be enough. At least I hope it is.
Ugh. I understand how you feel. I feel SO guilty about being the sick person in my relationship. It’s embarrassing being young and dealing with being blind in one eye or not having a real hip (ha). I really get consumed with the guilt sometimes. I don’t really know how to handle it because I think I’m doomed to always worry that I’m being resented, but not being told.
But you’re right, all you can do is be grateful.
Thanks for this post. It’s nice to know other people have the same feelings. Well, it sucks that other people feel that way, but you know what I mean.
I really wish I could talk to you in person, like give u my phone number and have u call me. I’m so scared and lonely and list in all this. I took my appliance off today cuz it felt like it was tugging and needed to be changed and low and behold there it was, a HOLE in my skin right next to my stoma. I can not stop crying and don’t know what to do otherthen call my surgeon in the morning and worry about what he’s gonna do about it. I’m sick to the stomach worried it’s gonna get bigger or worse infected. I worry it’s gonna happen again. I do everything to make sure it’s securly sealed and I have absolutely no one else to talk to about this that understands it :,(
Janelle,
First thing to do IS call your surgeon. If anything can be learned from my hole, its that no one butt your surgeon can help you with this kind of issue. Next thing to do is to see what it is, a pyoderma or an abcess. MAKE SURE. If they suggest it, (or you suggest it) biospy the tissue to see if it is a pyoderma for sure. I treated mine for like 2 months as a pyoderma…and then it wasn’t one, which probably made it heal slower.
If its an abcess, then be happy its atleast above the skin now!
Next…depending on what it is, you’ll need to get the right kind of dressing for it. After you figure it out go here http://www.dermasciences.com/contact/
Contact their WOC nurse, Kim. Tell her what you have and you’re looking for a dressing. She is AWESOME. She will send you some samples. Their dressings are the only things that have worked for me so far.
My hole still isn’t cleared up and its been months. It takes a LONG time to heal them. But if its not painful, then you’re in luck. Trust me its scarier to look at then it really is. My surgeon stuck needles in mine! BUT he numbed it..I’m telling you, its scary but there is a lot you can try, most of it is trial and error. But, don’t be afraid to call him, hes the only one who can help you.
keep me posted.
They are still unsure what it is, if it was leakage breakdown or just a tear. The ostomy nurse packed it with stoma powder and skin prep and told me to change the whole applience and do it all over again in 4 days. It will probably take 2 weeks to heal.
I’ll let you know how it goes.
I have been reading on that medi honey, is it worth it, should i buy it to use?
You don’t have to buy it. If you want to use it, call that nurse I told you about and ask her to send you a sample. She sent me a whole bottle.
Thank you Jackie. I called nurse Kim and she is sending me a few samples after i explained the hole in my skin next to my stoma.
I still have not learned how to handle this, nor has my husband learned how to be relied upon without eventually turning into to a monster that I don’t know and loosing his cool on me verbally. I don’t have a lot of energy (about 1/4 that of my presurgery/pre-marriage days). As a result some days I just have to chill and let my body rest, knowing full well that I will get the wrath of my frustrated husband later on. It sucks. If you learn how to deal with people/situations like this, please forward the info to me!