I’ve been dealing with constant pain and swelling of various forms for the last 3+ years, mostly its just hard to function due to the pain and inflammation. I have my mentally strong moments but get very frustrated with myself when I am unable to accomplish something as simple as opening a new gallon of milk. Along with the pain and inflammation comes the loss of strength. I went from being, as my mother puts it, a tank… strong, athletic and always on the move to someone who makes a sloth look like a race horse. My not so mentally strong moments seem to be getting more frequent as time goes on. I see my kids getting older and me not able to do the things with them I used to or always wanted to do. I know the depression goes hand in hand with PsA and whatever else ive got but when is enough enough? 3+ years, no relief, no remissions… nothing. I am so tired of being in PAIN! Its hard to do anything… sleep… ha I cant even truly rest without medicating myself up and even then I know im going to pay double for it in the morning.
I sit and think (because that’s what physically hurts the least) about the future. My mind likes to take a little seed of thought and play lets see how catastrophic we can make this… Is my youngest going to resent me because I was able to do things with his big brother that I cant with him? How is it fair to ever think of having another girlfriend (single, shocker I know) the way I am and have to deal with me like this? Is this just how my life is going to be from now on? How much longer am i not going to be able to make a complete fist or bend my toes… The list goes on and on for days…
I wonder if I am the only one who thinks these things? Im tired of saying I can’t open this, carry that or walk that much. Im tired of not being the active guy I used to be. Im tired of missing out on life!
Ill stop rambling now. If you’ve read this far, thank you for putting up with my complaining. I just needed to get this off my chest somewhere.
I doubt very much that you are the only one who thinks these things. Yet I can understand all too well why you ask if you are. You did well to write it all down quite succinctly and clearly … I mean that. I’d probably have got tied up in knots. And such feelings do need expression, I don’t believe that voicing them is the same as wallowing.
My mum was a single mother and had MS pretty badly. From that experience I’d say that what kids need, what I needed, was a parent who loved me and didn’t let the disease grind them down any more than they could possibly avoid. I really didn’t mind the extra responsibility and lack of action, it was the despair that freaked me out. I honestly think that seeing someone struggle and yet make the best of it is one of the most life-affirming things a child can witness. They may moan, protest, try it on … but ultimately every battle you take on and those you win will earn their respect little by little and teach them how to take on life’s less challenging moments with confidence. You’ll reap the rewards when they’re in their 30s lol! Meanwhile, hang on in there. So easy to say, eh?
And while I’m at it … 2 of my sons are madly in love with women who have fairly severe health problems. Do not give up on the girlfriend front!
I wish I hadn’t given advice now but anyway, I did. Mainly though I just hear you and are glad you’ve joined us.
No you’re most definitely not. But do hang in there. It sounds a bit corny but listing the positives instead of the negatives as in forcing yourself to find a positive does help to make it more bearable sometimes. But other times just being heard is all that’s necessary so consider yourself ‘heard’. Cyber hugs.
Your definitely not alone… I’m sorry your going through all this! Maybe you can get some professional help?.. it’s not weird that you have trouble coping… I wish someone told me that before I totally broke down…
Thank you all for the wonderful words of encouragement. Most of the time I try to stay focused on the positives in life just sometimes it gets a little overwhelming.
I really do appreciate all that you wrote, sincerely… thank you
Hi cptjacksprw,
I’m trying to catch up on the discussions–I’ve not been on here for awhile (big mistake, because I’ll never find time to catch up on all of them)–your discussion caught my eye and when I read your remarks I felt you speak for all of us.
Since I haven’t read all of the other discussions, IDK if you explained how you’ve been treating your PsA–are you on a biologic or have you tried one? It sounds like you have some terrible constant pain, and more than anyone would want to deal with for three + years straight without any relief!!! Do NOT feel embarrassed to tell us how you feel–we understand! But, I know exactly how you feel
because it seems like nobody understands and everybody thinks “what a baby”…at least that’s what’s going on in my head every time I decline lifting something or walking.
I hope, if you haven’t been on a biologic, your rheumy feels it’s time for that–it sounds like you’ve been through a lot, and surely there are better days ahead!
Hi cptjacksprw, I’m new here and still finding my way around it all… I understand all too well how are you are feeling, and even the catastrophizing (?spelling) too, even though my symptoms are no where near as severe as yours sound.
For what it’s worth my thoughts are we are allowed to grieve the loss of our health, just as we grieve any other loss, I would suggest it would be unhealthy to NOT. It is a difficult time!!!
I sincerely hope you are able to find a medication that helps your PsA, and soon!!! Have you spoken to your doctor about how you are feeling? It might help push for at least a trial of something that might give better control of the PsA.
cptjacksprw, I saw your other post about Humira and Enbrel…sorry to see you didn’t have good results from them!
Will you go ahead with Remicade? As far as I know, here in America when a person retires and goes on Medicare, Remicade is the only biologic covered. So, I’m always curious how Remicade works for others because I doubt I’ll work past my full retirement age of 66, which is 26 months from now, and it worries me so to think about switching to Remicade…Enbrel has been working for me and if it continues to work I don’t want to switch but, due to financial reasons when I’m retired, I won’t have a choice if Remicade is the only biologic covered.
Yes, I worry too far in advance…wish I could turn off the anxiety!
Hi. I totally understand where you’re at. I have had fibromyalgia 26 years and psa 5. 3 years of drug trials that didn’t help. Finally put on Remacaide IV. There are periods when it helps. As I found throughout April/May I needed prednisone. It’s difficult to go through the grieving process of abilities we have lost and all the changes. My husband has had to learn to not push for actities I can’t do. We have a policy where I decide what I feel I can do and give him multiple choices. You can find a girl! Avoid the ones who are self absorbed. I have tried doing lots of new things in order to figure replacements for what I lost. Try it! Water activities , book clubs, movies, theater. Sit down stuff where you can briefly roam when need for comfort. Hang in there!!
Hi everyone ! My name is Beth and I’m new here , I’ve been lurking in the shadows awhile reading the posts …I’ve been diagnosed with PSA for almost 4 years , I’m on methotraxate and iv remicaid, I have more the autoimmune component than the arthritis although I have flareups and my sausage fingers …my toenails just fall off on their own so I save a lot on pedicaures…and I’m a RN Clinical Supervisor at a very busy hospital and take care of my 81 year old mama …I understand your feelings about being tired of it …it’s rough having this and it’s really one of the worst arthritis’s to have. But on a good note…I get very tired of the pain and fatigue and meds ectra …I take it one day at a time and try to do something positive everyday ,like get a sandwich at my fav place or read my book , watch a movie …ectra … I wish I could give you a hug and let you know your not alone ,I love this forum and I have read a lot of wonderful comments ,
