It can be really hard to find the motivation inside me to do my PT too. I am young... I really have ALWAYS been so active and I felt so depressed when I realized I was loosing a part of me. It was very hard to accept it. There have been many times I have broken down in tears because I hurt but, I don't hurt that much, I hurt mentally. I am TIRED of this. I feel like it never ends. I feel like there is no hope. I work with disabled people and I see myself being one of them someday. I don't know how comfortable I am with that. I know what it's like for them to have to have someone dress them, shower them, transfer them to the toilet, wipe their butt, and they hate it. They wake up and sometimes tell me they wish they were dead. Those are the bad days when I know they can't stand being in a wheelchair and I don't blame them. I let them vent because it has to come out. I try my best to focus on the positive and make their life happy and worth living. When I am at work I take care of every single person as much as I possible can. I ask if they are comfortable and I acknowledge their pain and feelings. I don't really know where I was going with this but, I just wanted to connect with you because I too was very depressed. Maybe it was when I had my car accident I changed my mind about my attitude. I should have died but, I didn't. I could be in a wheelchair now but, I am not. Somehow your daughter has to find something to live for. I know even now there are days I wake up and feel so bad that I just don't really do anything all day. I get up and use the bathroom, feed my dogs, and lay back down with a heating pad. I really do feel fatigued though on those days and it doesn't happen all the time... I really hope your daughter can at least get off the Vicodin. I was on that for the pain from my accident, well Morphine at first then Vicodin and it is VERY addictive. I bet once that gets out of her system she might be able to find some motivation. Maybe just take her for a short walk around the block. If she can't do that take her out for a drive but, try to get her active because the more she waits the tighter her body is going to become and she is only going to speed up the process. I hope you find peace with all of this too. It must be very difficult.
Hi Karen,
I am currently 36, diagnosed with PsA just this past year but at age 18 I was diagnosed with type 1 diabetes. I was a senior in high school. Certainly not trying to compare that disease with PsA but it took me quite a while to gain acceptance over that. At 18, there were so many things that my friends were doing that I couldn’t. Even at 25 there were so many things my friends were doing that I couldn’t. I can’t imagine how hard this must be for your daughter. At her age she is old enough to care for herself yet still young with a chronic disease where she needs help. I remember how my parents never knew too much about diabetes because they just didn’t have to. I was old enough to check my sugars myself, take insulin shots, etc. it was hard on them because they felt helpless yet I felt like like I didn’t need constant supervision. Anyways, I guess my point is that it will take some time to accept what’s happening. And as someone else said, she is just starting off her life but now has major restrictions that her friends probably don’t have. Try to understand what it s like for her to not feel like everyone else at this time. Be there for her not not too much. The biggest thing that helped me was counseling. And an anti depressant. I only went on it for like 5 months and as my counselor said, I just needed something " to get me over the hump". Hugs to both of you.
Thanks for all the advice - it is a warm welcome to the outsider. I am constantly reminded that this is happening to her and she has to find ways to deal with it. Right now, those ways would not be my ways - but they are her choices. I keep reminding her that she has this one body to get through life - and to treat it well. Instead, she smokes for her anxiety, drinks to ease and forget the pain, and when a doctor will prescribe vicodin, she will take it. Hmmmm......not great choices for PsA, let alone someone who is relatively healthy. Tonight she is out camping with friends at a local lake. I am glad for her "fun" but know that she will pay for it physically in the days that follow. She does not want the PsA to stop her - only when her body completely says, "no more" does she rest and consider doing all the things the doctors have suggested (food, rest, gentle activity, etc.).
I know that this is why it was mentioned this is not going to be a good outcome unless she deals with it properly. I know that the counseling piece is crucial. I am hopeful that this will be the week she decides to make the call. Who knows?
Thanks!
Karen, you talk about your beautiful daughter as any mother would. How about you? Are getting what you need? How can we help you?
Karen, when I was young I would push myself and go out and do whatever my peers did...dances, late nights, running around town, and I would have to lay in bed all weekend to recuperate. It's a tight-rope walk emotionally and physically.
I never got into the smoking, drinking, or pain pills, as my stomach was shot already by high school (no alcohol) and smoking is revolting to me. Never had pain meds either until about 15 yrs ago, after I'd had my kids. But I really commiserate with what your daughter is going through.
Karen said:
Thanks for all the advice - it is a warm welcome to the outsider. I am constantly reminded that this is happening to her and she has to find ways to deal with it. Right now, those ways would not be my ways - but they are her choices. I keep reminding her that she has this one body to get through life - and to treat it well. Instead, she smokes for her anxiety, drinks to ease and forget the pain, and when a doctor will prescribe vicodin, she will take it. Hmmmm......not great choices for PsA, let alone someone who is relatively healthy. Tonight she is out camping with friends at a local lake. I am glad for her "fun" but know that she will pay for it physically in the days that follow. She does not want the PsA to stop her - only when her body completely says, "no more" does she rest and consider doing all the things the doctors have suggested (food, rest, gentle activity, etc.).
I know that this is why it was mentioned this is not going to be a good outcome unless she deals with it properly. I know that the counseling piece is crucial. I am hopeful that this will be the week she decides to make the call. Who knows?
Thanks!
Karen, I cant imagine how hard it is watching your daughter go through this. I know the saying…you can lead a horse to water but you cant make it drink, but, to me it doesn’t sound like the healthcare professionals have had a comprehensive plan for her so they have not even led her to the water!! My friends daughters psoriasis started a couple of years ago along with some joint pain she was 18, her GP dismissed her problems, but knowing my story her the family managed to badger the doc in to referring her…she is now being treated holistically, counselling, dermatology,rheumatology, mental health team, OTs and has a specialist nurse as her primary contact. Her decent from a beautiful bouncy independent girl to an unwashed grumpy overweight mess was frightening to behold but with the right treatment she is well on her way to coping with her life, she still has a way to go in her own head, but she will be given the help to get there. She says that she felt she had "her promise taken away"
I hope your daughter gets the help and support she needs from the professionals x