Its supposed to rain tomorrow. I'm going to hurt so bad. I told my mom that I would and she answered me super fast "well I can't help you". Thats bothering me. Well YAH you can't help me. I didn't ask for you to help me! What really makes me angry is she said that and I can't take any pain medication because it reacts with my MTX and makes me want to throw up. I don't know the response just got on my nerves and was kind of uncalled for, I know she's my mother and I shouldn't get upset at her because I already did today... Its just hard when you have to move around and are expected to do normal chores like cleaning and stuff. I just don't feel happy a lot because I hurt a lot and its not fun.
Sorry, kitty. Bad deal that the pain meds react with the MTX.I used to have to take a pill for nausea when on MTX. It helped a lot but made me sleepy so it meant I had to re-jig when I took what so I would at least be awake and not feeling sick to my stomach during the work day.
You know there's a lot of truth in what your mom said, Your illness is probably one of the first times in her life as your mom that she is powerless to help you. That has to be very scary for her. Of course, I intend in no way to diminish your own fears or your own coping skills. It sucks in all directions. PSA is an equal opportunity bummer. Whether it's the patient or the family member it is a really hard journey.
You have a right to be angry, but be angry that you have PSA. Try to not be angry with your support network. We all have friends who understand so little about the disease that they say uncaring things--mostly unintentionally. I have a friend who always says "get well soon" like I'm getting over a cold. I have told her about the word "chronic" as in "chronic illness" but somehow she can't register that thought. I don't get angry at her anymore. I simply accept that she's wishing me well in the way she knows. It might not be in the way I prefer, but at least she's thinking about me!
So glad you can come here to vent! Far easier to do it here and be encouraged than to let it fly with those who care and regret opening your mouth a few minutes later as everyone reels from the aftershock (been there, done that, have several T-shirts and scars to prove it...).
I might suggest that you buy yourself and your mom a copy of this book:"How To Be Sick" by Toni Bernhard. I found it SUPER helpful as the person with the illness and my partner has found it useful for trying to cope with the loneliness and helplessness that comes with having a sick person in your life.
Talk to you soon. Hang in there!
Sybil, I think I'm adjusting to this kind of "quickly" because (this will sound bad) I'm used to hurting. Ive been in multiple (like 2 or three? can't remember) car accidents that messed up my back so I was used to every movement hurting. It kind of just transitioned from the back injury and recovery from it to the PsA... I feel bad for my parents for having to deal with me and my lack of movement because I used to be able to help more before all of this happened. It is still taking everyone (myself included) a lot of time still to becoming aware that I am not the same person and have the same energy levels that I used to. I really wish they didn't have to deal with all of this because medication and new diets can be expensive as well as the gas to get to and from appointments but I try not to think about that to much because then I start worrying even more and I do enough of that already.
Janeatiu, yah when I do take pain medication it makes me want to throw up but I don't really want to take anything to counteract that so I just go without pain medication. For me the less medication I'm on the better. It does suck a lot. I guess it teaches you how to cope with pain. I in no way want my mother to worry about me even though I know she does. Things would be easier if the PsA could magically disappear right? I would love for that to happen.
I don't want to be angry at my mom but sometimes there is just so much anger that if I don't direct it at someone I tend to direct it at myself. Neither are good options though because they both have negative consequences.
I would rather vent here because people here know kind of where I'm coming from where as people who haven't experienced it like my friends and family wouldn't be to thrilled. I try to talk to them about these things but they don't understand and sometimes I feel like they just don't even hear me? Like "there goes Amanda again talking about how much she hurts" I try not to talk about it a lot and I try not to cry in front of people when it gets that painful just because I know that reaction will happen. Sometimes though the only way people will actually listen to me about how much I hurt is when I get to the point of crying. I guess it makes it more real?
Thank you for the book suggestion I will look it up. Always looking for things that could help.
you're doing fine, kitty. really you are.