Lately, I've felt more that I've merely been existing in my life instead of living it. My Crohn's isn't too bad, but with all the problems in my back and hips, I have been miserable. I rarely go out anymore, as walking is so painful. The only really comfortable thing is lying flat on my back. Because of the Crohn's, I can't take the NSAIDs that the doctor would normally recommend. I've had 2 cortisone injections that instead of helping seem to have made things worse. I just am bummed that I don't get to do the things I normally enjoy.
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Existing vs. Living
- Thread starter LindaS
- Start date
nogutsnoglory
Moderator
I totally feel you, I feel like everyday I do so much just to survive but I don't thrive. This isn't a life, its just being my own personal caretaker and focusing solely on that. I am sorry you are struggling and hope that soon you can exist to live a fulfilling life.
Have you tried any pain killers other than NSAIDs? There are some other options out there.
I know it isn't exactly a good solution, but would you be able to go out in a wheelchair if walking is painful? I had one to use while I was recovering from surgery and my mum would take me out round parks and places. It was better than being inside all day.
I've also had to give up on a lot, because before I got ill I was a very outdoors person, I especially liked things like going camping, which is impossible now given my bathroom needs and other health issues. But I have found that finding alternative interests makes it easier to come to terms with the things I've had to give up. Rather than camping, now when I go on holiday it's often to cities where I stay in an (en-suite!) hotel and explore art galleries and museums rather than doing outdoor activities. Are there any interests you have that you could explore even with your health as it is now? Listening to music, writing, taking the time to have long phone calls with friends, anything else you think you might enjoy?
I know it isn't exactly a good solution, but would you be able to go out in a wheelchair if walking is painful? I had one to use while I was recovering from surgery and my mum would take me out round parks and places. It was better than being inside all day.
I've also had to give up on a lot, because before I got ill I was a very outdoors person, I especially liked things like going camping, which is impossible now given my bathroom needs and other health issues. But I have found that finding alternative interests makes it easier to come to terms with the things I've had to give up. Rather than camping, now when I go on holiday it's often to cities where I stay in an (en-suite!) hotel and explore art galleries and museums rather than doing outdoor activities. Are there any interests you have that you could explore even with your health as it is now? Listening to music, writing, taking the time to have long phone calls with friends, anything else you think you might enjoy?
UnXmas, I think my main issue is that I can't do things with my son. He plays soccer, and I used to practice with him, as I played soccer in high school. Now, the thought of running around is just impossible. And while he doesn't mean to make me feel guilty, he constantly says how much he hates my Crohn's and back issues, and how much he wishes I was healthy. I think that just adds to my unhappiness. I go to my spine doctor again tomorrow, so I'm hoping he can come up with something to help me. I haven't been able to sleep well due to waking up in pain all the time. And when my back isn't bothering me, it seems the Crohn's is.
I don't have children, but I can imagine this must be very hard. I do know what it's like having multiple health problems and how it always seems that if it isn't one thing, it's the other. I'm sure you know this, but you shouldn't feel guilty - it's the illness that's upsetting your son, not you, and one day he will understand this, if he doesn't already. Does he have any less active interests that you could do more of with him?
When I wasn't able to sleep through the night, my doctor prescribed sleeping meds, and they're a real blessing. I didn't realise how miserable lack of sleep could make me feel and what a difference it made when I could sleep again. It might be something worse considering, if you haven't already. I can't find any really effective treatments for my stomach discomfort which can keep me awake, but approaching it from the other direction and taking pills that knock me out enough to sleep through the discomfort seems to work very well, so if you can't find effective pain relief, that might be another way you could improve your sleep.
I hope your appointment goes well.
Kev
Senior Member
- Location
- Halifax, NS, Canada
Not being able to do the things you once did with your children must be hard to deal with. And it is obvious your son misses your involvement. Maybe you could tape his games, then both of you watch them so you can point out to him all the good things.. sort of home coach him? Give him the benefit of the experiences you have from when you played. And it will show him you are interested... involved. Just a thought, and far from a brilliant one.
I was blessed with ability to sleep through anything, even my pain. My sympathies to any person who doesn't have this gift. I've heard that loss of sleep is far more detrimental to our overall well-being than we realize. That one nights disturbed sleep takes 3 - 4 nights good sleep to recoup. So, sleeping pills, OTC or prescription is something to look into. As for pain... TENS systems.. although I don't know if they would have any effect on deep, internal pain. Back pain.. that I can relate to. I swear by chiropractic treatment. Used to think it was hocum, know from 1st hand experience it works. Holistic or alternative treatments should be explored. Many folks swear by cannabis. I know that cigarettes, although lethal in the long run, both stop my bleeding AND ease the cramps from all of my scar tissue. Basically, you have the right to do whatever it takes to get you through.
I was blessed with ability to sleep through anything, even my pain. My sympathies to any person who doesn't have this gift. I've heard that loss of sleep is far more detrimental to our overall well-being than we realize. That one nights disturbed sleep takes 3 - 4 nights good sleep to recoup. So, sleeping pills, OTC or prescription is something to look into. As for pain... TENS systems.. although I don't know if they would have any effect on deep, internal pain. Back pain.. that I can relate to. I swear by chiropractic treatment. Used to think it was hocum, know from 1st hand experience it works. Holistic or alternative treatments should be explored. Many folks swear by cannabis. I know that cigarettes, although lethal in the long run, both stop my bleeding AND ease the cramps from all of my scar tissue. Basically, you have the right to do whatever it takes to get you through.
I saw my spine doctor today. He's recommending surgery, and I'm not sure I'm going to go through with it. Everyone I've ever met that had back surgery to help with pain has not had good experiences with it. I'm going to try another round of physical therapy before any surgery. It hasn't helped in the past, but I want to exhaust all my options before surgery. The problem is the disk is impinging on the nerve, so I worry that anything besides surgery won't help. He's also recommending another MRI. Thank goodness my husband's job provides top notch insurance. Between the Crohn's and this, I use a lot of health care!