transition out of the sick role

I'm doing rather well, so this is a good problem to have and I'm not complaining.... but I am having some trouble accepting how much people helped me while I was really sick and having surgery/recovery the last few months. Sometimes I feel like I owe people and I'll never catch up, but then I think that I'm the one who was sick and miserable all this time....

This is coming from inside me, not from anyone else.

My partner and I made it clear from the start that we didn't want a relationship based on caretaking (probably more of a risk with two women, but still a risk depending on the personalities), even though I was sick from the start .....and that was never what we were about.... but then for the last six months I've been so, so sick, and there just was no other way. And she was amazing, I am so grateful. But not wanting to be patient/caretaker anymore, and not sure how that transition works. Of course, we are talking, and I think we'll work it out (and this does seem to be more my issue).

Just wondering if anyone else has thoughts/experiences/suggestions.

Oh, I can so relate to this. My husband has been nothing short of amazing in taking care of me and the kids these last six weeks. He has always been good about giving me a chance to rest when flaring, etc even though he works and I dont. As I am recovering, I keep finding I have to remind him that I can do things! I think it is hard for those closest to us to get used to the healthy version just like it is for us. It's all an adjustment.

I would give up on the idea of repayment or catching up. I don't think it's something we could possibly do in this lifetime. Just express your gratitude and let her know you are there for her if she ever needs you in that way.

Collicat said...
This is simply what true family, people that love each other, DO. I do not believe there is any need for "repayment". If the tables were reversed I am sure you would have supported your loved one in the same manner. Just let them know how much you appreciate their support and be there for them when ever possible.

 

 

Ditto........my thoughts eactly.

My husband would wrap me up in cotton wool if he had his won way but I am and always have been very independant. I will do things that maybe I shouldn't do like DIY around the house, I know it will make me tired and ache like hell but refuse to accept I cannot do it, so actually feel really sorry for him as he would love to take care of me and have me not do anything tiring but I'm too stubborn to give in.

But then again I do pay the price, I only got my recent flare under control on middle of March and went back to work 2 weeks later at beg of April when maybe I should have had another few weeks off to build uo stamina after being ill with it for 4 1/2 months. So last week has weeks holiday and did loads of gardening and housework and odd jobs and then crashed on Satuday as had run out of juice. Last night was really rough and had shivers, headache, cough ached all over so have caught some sort of bug. Still dragged myself into work this morning as no way was I phoning in sick having only been back a few weeks.

Felt rough as hell and came home at 3pm, my boss was great and said would rather I went home to rest than push on and be off longer again as pushed myself too hard, then she said 'you do look rough though' which sort of made me pleased as it means the steroids are obviously getting out of my system or I would look stupidly healthy.

Sat here now in two layers of everything shivering with box of tissues and hot cup of tea and taken more codeine for aches. Will spend my day off tomorrow in bed to try and shift it. So much for trying to do too much too soon. :)

You might want to write a small note to those who's help meant the most. Kind of a passage for your mind to step in to the next level of recovery. It doesn't have to be elaborate just from the heart...our bodies and minds do go through a grieving process with such an extensive surgery and we all have different ways of getting through it.

It will get easier!

Thanks. I actually bought four boxes of notecards and am working through my list of people to thank.

I have been thinking about a family member who is younger than me and who had health crisis that was quite a bit more serious than mine last year.... we were waiting to see if she'd get an organ transplant (she did, and is doing great), but she had just days to live if she didn't. Her surgery was 20 hours, and she was unconscious for two weeks after surgery.

During that time, we all just felt so helpless, and I am sure for the people who were nearby, anything they could do to help her made them feel better. My situation wasn't so extreme, but I had quite a while where I was suffering and nothing was working, and people wanted to help but there weren't many things for them to do.

I know that helping others often makes me feel connected and good.... it's just hard for me sometimes to remember that helping me could be like that for others too....

Enigma, I agree, no shame in being vulnerable, and everyone dies, many people get sick first.... but in the US, we are so big into thinking we can avoid that if we just eat the right things, buy the right creams etc.....

In any case, thanks everyone for all the reminders.

I can so relate and understand. I've spent all my life being the caretaker. Divorsed mother of 2 for 6 years, lived and cared for my father until he passed last year. Was in remission for 3 years until 09 when the diverticulitis recurred. Had 6 infections until surgery last year...which didn't go well and came home 5 weeks later. I have thankfully great neighbors that checked in on me, a parent at my kids school that came and picked up & dropped them off first week, and a couple of friends that brought food every day for 1st week. 8 days later, I carefully started to drive, went shopping and got stronger. I can't be thankful enough to those that helped me, and I am so independent...I never ask. I've given back, visited the sick, even painted my friends mothers nails when she was in ICU after a coronary triple bypass because that is what a ICU nurse did for me. And I'm equally disappointed in those that made excuses and never saw me until months later. Makes me think about the significant other topic too, I enjoy my independence, and have always taken care of myself, so dating is hard because don't want to feel like a burden or overwhelmed with obstacles. I've accepted the road given to me even though I disagree with it sometimes and hope to find a balance in another, giving and receiving. I don't want to be portrayed as needy, being a patient & pittied, but being alone in that condition, made me realize, evermore so, that I don't want to walk through life alone. Much strength and encouragement to all of you!!!

Stripey, glad you're getting some rest. Enjoy your soup. Not so good to do things you know are stupid though .... (if they're "maybe stupid" that's another story )

I had several things happen at once that made me see my friends less.... got sick, got in a relationship, and a lot of them had kids. I was missing friends before I got super sick .... Not sure I can sort out who is a "real" friend and who isn't, but I sure did get isolated.

The people who visited me the most in the hospital and afterward leaned heavily toward people who had had major illnesses themselves (or their partners had). They know how much visits mean, and they are less freaked out by the whole thing. But a lot of people didn't really know what to do, and I was not in the mood to instruct them.... some said call me if you want a visit, and I didn't feel like calling anyone.... but I got so many nice notes on my blog and such, and I guess I was wanting to be alone a lot too....

Windy city, I don't know how old you are, but one thing I found when I met my partner was that you can actually talk about all these things you mention, fears and limits and balance of caregiving and whatever (and you can ask for things too and the other person can say yes or no, as can you).... it's so much easier than when I was younger and came in with so many "shoulds" for myself and for a significant other.... of course, a big illness can shift things.... Hope you find someone good, if you decide you want that.

Um stripey weren't you sick for four months or something? Do take care..... I am kind of low energy today and was making a big deal of wondering why, and then, um duh, I am not all the way recovered yet and being out and about, as I have been, takes it's toll.

Well, it's a mixed bag the technology..... allows us to be in touch w/each other and all these people w/ostomies, to get answers in minutes when we freak out about something.... but yes, it does make people take short cuts.

All I can say is that as I am able, from now on I will make it a point to visit people when they're sick.... At one point, I was worried about intruding more than I was concerned about the person not having visitors.... now I think I get the nuances better.

Oh, and don't be stupid (which I'll let you define)....

Stripey, I hope you feel better soon..... one thing after another.

I found out yesterday that my butt wound is still 3 cm deep, same as it was 4 weeks ago, sigh.... we're trying a new packing material. My surgeon and nurse assure me that it will close..... just more steroid havoc that it's taking so long to heal.

She said I can take a bath as long as it's in my own tub, and swim as long as it's in a lake or the ocean, not a pool. That was a nice surprise.

Three hours is a lot -- would be too much for me even when I was doing well!

That's weird w/how you taper steroids.... for me I tend to lose a day or two every time I go down, just draggy and feeling off, and then I just feel horrible in the a.m. before I've had the pills. It's a drag that you still have to be on them .... I am hoping I never have to be on them again.... but still don't know if I have Crohn's or UC.... so far no small intestine involvement and no arthritis, but I have had skin complications that are associated w/CD not UC (a plague of boils.... definitely one of the worst things I've had, and my gi doc isn't positive that surgery fixes that, although so far so good.... but those are things that get antibiotics, not steroids).

Hope you keep getting better....

Hope today is better. Robotic tortoise is quite an image, you have a way with words.... I call myself the "hotflash cookie monster" when I'm on pred.... that one thing after another cycle is such a pain... I had that before my surgery, just wondering what would go wrong next.... hoping things are better now, seem to be. Hang in.

Feeling bit better today but think it is because I take some tramadol at lunchtime and this allows me to continue my slow moving around but the tiredness from the tramadol doesn't hit me until after I get home, so will continue with that until arthritis settles down again which should be in a few weeks time.

The CD is now in remission and that side of it is great to be back to normal again, well as normal as it is ever going to be, once this arthritis thing sorted then will be back to normal.

My normal day off tomorrow so am going to have my nails done and have a bit of a lie in, if the dogs and cat let me :)