Well, I am sure we all know how it feels.... you are going along just fine. A "fine" sort of way we PsA people endure. Then BAM!! Out of nowhere you hit THE WALL! Maybe you wake up one morning and you can't move. Maybe you are fine until lunch time then your brain turns to mush. Can't hold a conversation? Can't walk down the hall? This WALL is horrible but it's temporary. I am holding on to that TEMPORARY fact.
No walking today or keeping my eyes open. But I will have a cup of tea.
Happy Thursday to you too, Amielynn. Hang in there, and have lots of cups of tea, and relax. Cuz this isn't going to last. You know there are better days ahead.
Hope you get to feeling better soon! Hang in there. Funny you always post on some of my hardest days too, lol. The fog that never lifted today with so much on my plate, finally is receding but now its almost bedtime. Coffee never works until I get to relax it seems. Sometimes we can’t win but tomorrow is another day.
Hi amielynn - sorry today is a tough day - I know we’ve all had them but it doesn’t make it any easier when they come! Rest, do things that you love to do and know that better days will come …
Rachael, I know. It seems our PsA cycles have synced! lol! Well, always know someone out there is hurting right along with you. No coffee didn't work either. After two cups of coffee and two cups of tea (spread throughout the day) nothing. Today I woke a little better. Not so much fog. That's a good start!
Seenie, that's right!!!! I have a beach vacation coming up in two weeks and I don't have time for this crap! On wards and upwards.
I think if I was alone during the day, my bad days wouldn't be so stressful. But I have a 5 year old son, who is homeschooled. A lot of responsibility rests on me and I feel I have left him down when I am in pain. I know that's not the reality, just something I have to come to terms with.
I think it is interesting that so many people have this thought pattern that if they are unable to be everything to everyone they are somehow failing. That was me. I was the primary wage earner in my family, had been a single mom for many years, and worked crazy hours doing crazy things (80-120 hours per week usually). I also attended grad school. Wonder Woman I am not. But I am a bit of an over achiever. A year prior to my complete and total decay (smile!), I got married to a terrific guy. When my disease finally got to the point where I was doing more harm than good at work, I finally bowed to my doctor's opinion and quit my job. Then my body just decided to quit. Here I am 4 years later still not working. My contribution to the household has also steadily declined. When I could no longer identify myself as "CEO," my self-worth got tied up in becoming a really great cook and housekeeper. Then I got worse. So "housekeeper" got dropped off my job description...but I took comfort in knowing that my kids and husband would come home to an amazing meal every night. Then I got worse again. Now days, I'm lucky to do much more than a load of laundry that I may (or may not) get around to folding and on good days I might even cook something yummy from scratch. Most days I throw something in the oven that someone else prepared, boxed, and sold in a store somewhere. Then there are the days when I can't even do that, and dinner is "on their own." Throughout all of this I've had to redefine who I am and what makes me a contributing member not only to society but to my own family...and the guilt is almost as crippling as the disease.
So...my lessons learned from this journey include a whole bunch about how not to feel guilty when I need to take care of my own needs over the needs of other people in my family, how to ask for help when I need it (still learning that one), how to be flexible in my definition of self, and how to maintain a positive viewpoint. Finding humor wherever and whenever possible doesn't hurt either :)
".and the guilt is almost as crippling as the disease." Yes, it is. Very much so. Then add mom guilt on top of it. I have let a lot of things go and focus on what I can do. Yes, that will change over and over again, but I am doing ok for now.
At the weekend I finally got round to downloading onto my Kindle the book by Toni Berhnard "How To Be Sick" ... I'm only a few chapters in and already it's made me realise how many opportunities PsA has provided for me to re-define myself and my life. And it's ok!
I "think" I'm finally beginning to grasp this is a journey I will be on forever, never a destination I reach. So, yes, I agree things will change over and over and over again.
Jules, I am waiting for my copy to arrive. I can't read books on a device. I like the feel and smell of the paper. though it's harder to hold some larger books. I need a book stand to read at times. BUT I love reading.
The guilt is so hard. I hate not being able to do as much and I hate needing help all the time too.
amielynn38 said:
Well said tmbrwolf!
".and the guilt is almost as crippling as the disease." Yes, it is. Very much so. Then add mom guilt on top of it. I have let a lot of things go and focus on what I can do. Yes, that will change over and over again, but I am doing ok for now.
I'm doing much better Scienceteach. Normally my down days only run about 3 days. I've been on Enbrel for 1.5 years now. Seems like a long time but it's not for a biologic. Just NOW I am feeling the benefits. Sorry Enbrel isn't working for you and I hope Humira helps.
Glad to hear things are better now, amielynn! It's so hard to stay positive when you hit the wall and don't know what the future holds. I have the tendency to imagine the worst!!!! You're doing great! I'm not sure, but was it you who had a lot of trouble with injecting yourself at first,? If so, way to go, girl! If not, I'm sorry for forgetting--I do have a terrible memory sometimes!
It is very hard to accept not being Wonder Woman anymore, like tmbrwolf said--terribly hard!!!! Most of us are the type of people who think we can do it all, and when those walls start crashing in it's not easy to swallow. In my case, with a 91-year old mom who still has an "attitude" it's even more disheartening!
Hello. Sorry I forgot to respond. I read your post and responded in my head then forgot to write it down! Brain fog has been back these days. Yes, it's hard to see yourself as weak and not able to do everything you would like. I am slowly accepting this but it's hard. I am only 34 and sometimes I don't leave the house for days at a time. I miss being out and about. I am sure I'll come to terms with it but it's not an overnight acceptance.
I do not self inject. My husband does it. I had problems with the pain of the injection. Not the needle but the medication. It burns terribly. I have tried lots of different ways to inject or ice pre-injection and I still get the same effect. Though, it doesn't hurt enough to stop the medication.
I just got back from vacation and I am flaring again. I expected it though. You go and go while on vacation and come home to suffer. It was a great vacation! Sandy beaches and sun. Just what I needed.