I WAS okay.
Over the summer, I used our pool to exercise. I lost 10 lbs, I walked straight and was doing very well. I over do, but do not know how I can do any less with 2 parents take care of. We have longevity in our family and I often say I don't want to live past 70 with this affliction. Of course, I have no say to that, I just say it. It gives me peace to know that I could live in the early stages staying away from the days where I know I will struggle to get around or pain that keeps me in bed.
With restless leg syndrome (RLS) on board as well that I have had for at least 20 years now, I know that I won't be able to lay for long periods of time and would literally go crazy if I can't move. I think of being caught in a situation where I can't get out from somewhere and going crazy with RLS.
Being a caregiver while also living with PsA
I know this sounds like I am depressed or worrying, but I have God to give all this to when I am over thinking. He takes care of that and I go on, listening to my mother tell me how much of a disappointment I am when she can't move her bowels. In my mind, I am thinking I don't care, you are just lucky I am standing here now and willing to take you to the store where I know you will look at everything twice until you're done. When I leave her at her apartment, I will cry all the way home, and wipe my tears before I go into my own life. My husband can't stand her, I understand why, but she's my mom.
Living with psoriatic arthritis symptoms
Now, as I wake up each day knowing I hurt, I hate mornings now. I changed from methotrexate to Humira, but have yet to see any results. I hurt more now, but I got to the point where I couldn't even draw up my dose before I am dry heaving because I know that's coming. I am sorry about my typos, but my fingers do their own things sometimes and with my brain fog I can't recall what a stupid coffee pot is without having to ask what's that thing that makes coffee while my husband looks at me like I am crazy while he gives me the answer and my light goes on and says, "that's it! coffee pot!"
The importance of movement
I will join the gym that has a pool I hope. They say no one uses it and they might close it. I will drive where I need to, to get movement. I move all day long, I must move around and keep busy. That keeps pain in the back of my head for a period of time. Anything helps that. Even battles on the phone with internet problems. Our provider makes it difficult to talk to anyone other than a bot. I know I can swear at a bot and hope that they really are hearing me or recording on the other end.
Worrying about PsA progression
Seriously though, I am getting worried. My knee hurts and I don't think it is the joint itself, so much as the tendons. My tendons are so painful. Just a touch will send burning pain down along my nerve endings to the end and back. I just sit there and tell my brain we are not living in here. We are going to get out of here and do our life. Then I say, "OK?" and I get the answer quietly, "ok... but I'll be back." NO you won't. Not when I am aware you won't. But like a loss of a loved one, it will come back and keep coming back, I just need to be ready.
People don't understand life with chronic pain
Often I sit and think other people can't understand my pain, and they can't understand that while they are asking me for something, I am already thinking that this complaining to me about something so insignificant is not even on my radar and I want to say, "go away" really! But I don't, you see I am one of those people that others come to for advice or help. I just don't know why.
My ramblings here make it possible for me to know that others such as you all are suffering too. I talk to people in stores when I see them struggling as well and have offered prayer right then and there. If you are struggling like I am and don't know what to do, send a prayer up to heaven because there will be an answer for you, I will guarantee that one myself,
Kathy Knitter
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