I’ve had a bad month with debilitating fatigue, post hip replacement physical therapy not going well and trying to work full time. Having to take long naps every day, sleeping 10 hours/night etc. unable to do much.
The past few days I’ve felt much better physically, but paralyzed with stress and fear that I have no future and I’m afraid to go anywhere, do anything because I’m concerned I’ll get stuck out somewhere feeling ill. I’m getting extremely depressed and I already taking depression med.
I had to cancel a trip to Brooklyn, NY with friends in June and cancel a trip to England in July.
I’m going to a local depression group meeting tonight - hope it helps. I’m also looking for a therapist.
Any other thoughts? Anyone else feel paralyzed by PsA like me?
Hi,
The fatigue part is fearful or concerning when taking trips, like “will I get fatigue in the middle of a trip.” What will I do, how will I cope with it? Driving trips are more concerning, as I don’t want to pass out while driving. When I visit my Mom, she is a 2 hour car trip to get to, then it is helping her around the house, and the return trip over the mountain pass at night. I did have one trip where I got chronic fatigue, but managed to make it home okay.
I figure I will just go for it, if I have to pull over or spend the night at a hotel, I will work something out, but it does give us pause about making commitments, on trips and social functions.
Do you do any ‘mindfulness’. I appreciate it’s a real ‘buzz’ thing presently but truly learning to live in the now and get through the now is pretty damn good. It takes care of now and stops some of that paralysis stuff.
Personally I think having to cancel stuff is just part of life with PsA, but you are cancelling things way ahead of time which unless you had to do it for travel insurance purposes seems a little sort of ‘punishing’ possibly? Just a thought.
Please get that psychotherapist. It will so help with the stress, fear and emotional paralysis. Meanwhile download some mindfullness apps and just start using them every day. Just like brushing your teeth. They help keep the brain just a little calmer. And help you to just enjoy your day now a little more and that helps.
In bad times I keep my daily to do list short and sweet. But I mentally tick it off at the end of the day. That ticking off shows me I’m still achieving despite feeling so rotten. That sense of just managing to achieve things helps too.
The biggest of hugs. I like you work a full time job. x
Hope you realize just how superhuman you have been so far, hip replacement and full time job, no wonder fatigue and symptoms! Am hugely impressed. Psychological aspects of our disease trigger conflicting thoughts, probably due to years of simultaneous interpreting for psychology seminars. Chemical responses to medication plus disease symptoms plus recovery exacerbate more or less everything, as found in similar situation in september. I do feel for your plight, and thank you for sharing. Certainly reflections on our here and now attitude versus our future sounds wonderfully inspiring, try to keep to it myself , and found great solace. Another life saving resource was detox from gluten and carbs and intermettent fasting, big antiinflammatory results. A hug
Is it PsA or could it be life in General and blaming the PsA is an easy out and a way of avoiding dealing with it. I know that’s where I was for a long time. Finally a wise one convinced me I needed a reset - everyone does from time to time.
A recent “reset” for me has made the last few years amazing. Heck I even started landscaping - tough physical demanding work. LOVE IT (only do a wee bit at a time.) It took a stroke to wake me up. Going back packing again (more about that later) In any event my wife and i spent some time ruminating over the weekend that it just doesn’t seem fair to be so damn old just when things are starting over and life is fresh.
Yep, the years are not fair! But good regardless eh? Apart from icy blasts of existential angst I often feel the same way. Frances … there’s real hope for the kind of changes you may want to see without magically turning the clock back.
I also have a theory. Too many times in here I hear that ppl have joint pain. Should MRI warrent it, then you need it. But all my pains are actually in the tendons and ligaments of the joint. HUGE difference. It would be awful to get a replacement if it’s the tendons that were causing the pain. Mine are all becoming “ropey”.
I found this out bcz I was sent to the pain clinic for my neck. For years I was in there with no diagnosis. Finally “flunking out” as he said, I was ready for a back surgeon. X-rays weren’t real bad though! Of course I found a Dr that “would do it if I wanted”…WTF???
RIGHT. So I finally got diagnosed with PsA after dactylitis and an glad I didn’t opt for surgery.
You need a better Dr that can control your pain. I don’t think a depression group will help you. Personally, I’d bring me down. But maybe I’m wrong. I hope you get back to feeling better but you need to slow down…WAY WAY WAY down…
Just wanted to add to my previous post to say that I am in no way diminishing the seriousness of what you’re going through. I completely understand that crushing fatigue is a very difficult thing to cope with.
When I refer to how happy I often am these days it’s not a case of ‘hey, look at me, I’m doing fine!’ more that I’ve struggled a lot in life but always with the belief, however tenuous, that I could claw my way through to better days. My thoughts therefore tend to be ‘if I can find an even keel then someone like Frances surely can too!’.
Small goals? Hey, maybe some big ones! Perhaps set your sights on particular things you wish to achieve or do, ignore the failures, celebrate the successes. Being hard on yourself can help if it’s constructive (and that’s not easy) but need to temper that with real acknowledgement of every single positive thing you know & like about yourself.
From my point of view, well yes and no - stressed, but not paralysed. And, to put it bluntly, my outside observation of your description of your life would definitely not have me paralysed in fear for you, if you were a close loved one, like my sister or child for example.
We’ve both been on this page for a looong time - and both have that crushing fatigue. I’m around ten years younger than you. Single mum, 9 year old.
I am absolutely gobsmacked every time you talk about working full time. I really am. My good days I sleep around 9 hours and am really useful when awake, not so good days 11 hours or more, then when I’m awake I’m a bit zombiefied. And my PsA is really well controlled, for me.
There is absolutely no way I can possibly have a reasonable quality of life, and work the “full time” expectation in my career. That’s without even considering my desire to be a somewhat useful parent.
Do you love your job? If not, is there another option? It really sounds like you are kind of driving yourself into the ground… and I’d hope there might be a way of getting by that doesn’t involve that, and brings a bit more contentment to your life
@Frances Absolutely Agree with @Jen75. I love what I do, I mean I REALLY love what I do, but were it a “real job” I couldn’t do it. Being able to set my own time, own hours, and my daily schedule is the reason I can. Having an amazing family and support network is critical too.
Hi Frances
Somethings that I do when feeling depressed. I write a list of 20 things I like to do or things that makes me feel better. Nothing that would cost you much money. Some examples are go and meet a friend for coffee, have a bubble bath, listen to a piece of music that you love.
Phone a friend, watch a comedy movie. Get the idea! If able get outside into the fresh air and go for a walk as exercise helps to get the endorphins working.(the bodies feel good hormones which can also help with pain.)
Regarding fear of something that has not happened, perhaps you can put that off and deal with it when and if it does happen. Work out which fear is effecting you right now.
As far as stress goes all I can recommend is to only take on as much as you know you can manage. How I avoid stress is to allow myself plenty of time to do what I have to do. I take many short breaks. I find I have to be very organised which does not come naturally to me. Knowing where everything is helps me to avoid stress and therefore I use up less energy and avoid fatigue. I do things like put my keys and wallet back in the same place. The night before an appointment I have a basket and I put everything I need into it and I leave what I can in the basket so it is almost ready for next time. I lay out the clothes that I plan on wearing the night before. I also use affirmations and tell myself that I can do it.
I agree with Jon by just telling yourself you can do it I sometimes do things I never thought was possible.
I call it pulling something out of my bum method for when I have to do it like travel to an appointment.
These are very practical methods for you to use or reject as you wish. I hope I have helped in some small way.
I sometimes think those of us who are feeling better since being on the right biologic tend to forget how awful PsA can be. I’ve had a lot of success with Enbrel–been on it nearly five years now–but it seems that maybe it’s losing some of its effectiveness off and on. My age (65) doesn’t help, either, because I’ve noticed a big change over the past couple of years, and mother nature is probably just trying to say slow down.
Anyway, I wanted to tell you to hang in there and try to be optimistic that things will improve. I know that’s easier said than done, because I remember how awful I felt 5 years ago almost at the point of giving up and thinking I wouldn’t make it to 70. Your hip will heal–I’m sure that’s getting you down–it would me! The thought of having a surgery and dealing with the PsA symptoms at the same time is overwhelming. You WILL get through this, though. You WILL get to travel again. Yes, it’s disappointing you had to cancel those trips, but you will travel again.
I hope the depression group meeting went well and you received some positive feedback there. Remember to come here often, too, because you are with friends who have a lot of the same issues and we understand.
The stress and fear are such a big part of every decision now! I’ve been an insight meditator for a long time but this (new for me) disease has truly made me see how slowly I have to respond to requests for my time, even from myself. I used to be the person who would always say yes, always want to help, always pitch in when needed.
Meditation, therapy, binge-watching Fleabag… do anything that helps a little and hopefully it will all add up!
I had to cancel the trips: 1) there was a refund deadline 2) was planning a trip to England with niece and for various reasons had to cancel way in advance.
