I was wondering if anybody had any advice on coping,I’ve been on methotrexate since November,I have really low days even though I’m a lot better on this treatment.I just so desperately want to be back to how I used to be before I became poorly
You are going to go through a period of time mourning your old life. You'll move through the stages of grief, and it's hard. We all want our old lives back, but you CAN adjust to a new normal and find GOOD things about this disease (yes, good things!). This disease has forced me to slow down and spend lots of time with my kids. I don't take a good day for granted. I only have true, close friends who understand my ups and downs. I have no energy for "keeping up with the Joneses" and focus on what is important.
You may be experiencing depression, which is VERY common with autoimmune disease. Many of us take medication for it, and it really helps. If your pain is out of control it can wear you down to the nub; make sure you talk to your rheumy about pain control. Get a disabled parking pass (ask your rheumy) if it helps you waste less energy on parking lots, so you have more to use for more important things.
Hang in there and keep posting. This is a tough disease but you can still have a wonderful, if different than you imagined, life.
Thank you so much for posting to me, it’s wonderful to talk to someone who knows what it’s like.l found a lot of comfort in what you said I had such an active lifestyle,I’ve never looked at it in that way before,I should be making the most of slowing down.Thanks for all the advise.
Miss S, welcome to this discussion board. I’m glad you’re here, but sorry that you’ve become one of us. One of the great things here is that we do understand how it feels – both physically and emotionally. It’s a tough disease in a lot of ways: hard to diagnose, makes you feel awful even though you might look just fine, challenging to treat, lifestyle altering. Not all of us are battling the same problems, but collectively, we’ve been right where you are now! We get it.
So hang out with us, and enjoy the companionship.
Marietta hit the nail on the head. When we first figured out what was going on with me, it was a pretty big shock and has definitely been a game changer for my family and me. I had a really rough time in the beginning; I felt as though I was losing parts of my life that I had always used to define “me”. Every day, another part left because it became something I could no longer do. So, not only did I physically feel bad, my emotions were taking a licking too. It took me a while to figure out that I was grieving for “me” or at least how I used to define myself. Once I had my “ah-ha moment” I was able to start letting go a little, cut myself some slack, and learned to adjust to the “new normal” and the new me. It’s tough, and there are some really crappy moments, to be sure. I have realized, though, that I still have a wonderful, loving and patient husband. I still have three really cool boys. And most importantly, I am still me and I have a lot of love in my life.
Just like, Marietta said, there are good things that can come from this. I have slowed way down. I am better able to appreciate my family and my close friends. I am kinder to and more forgiving of myself. I have become more compassionate and empathetic as a nurse.
Give yourself some time to adjust. Be gentle and kind to you. Get some therapy! Seriously, that was one of the best things I did for myself. I just needed someone to help me get through the adjustment period and it really helped me keep my thoughts positive.
I wish you the best of luck and I am glad that you found your way here. Message me anytime you need a hand.
Grumpy
I guess the word cope is disturbing to me. The simple fact is by coping you are admitting defeat. There are numerous ways to fight this thing, you cope when you run out of them. Until then you are in charge not PsA.
I don't know if any of you are history buffs. But do any of you remember the Maginot Line? It was a "brilliant" plan to protect France during WWII from invasion by Germany. They spent YEARS (starting in 1935) building this thing Tanks guns fortification. It was so strong that it was considered almost impenetrable as well as defended by one of the strongest Armies of all time. Well along came Germany. They didn't hit it head on, nor did they try. They simply went around it defeating what was considered one of the strongest Army and strongest defensive positions ever in the world in a few weeks. Not a shot was fired at the Maginot Line
The point is the Nazis didn't hit it head on, they adjusted and went around it. There is no shame in us not hitting this disease head on and doing what we always did the way we always did it or the way we THINK we are expected to. Successful people NEVER let others set expectations for them.I don't need to play soccer with my kids to be a good dad (grandkids and great-grandkids now) I can enjoy a video of the performance that I couldn't get to with them and have MORE enjoyment sharing with them. We still have our big 4th of July family camping trip. The kids fight over sharing my recliner that my number 5 son hauls up for me (BTW keep water close by, they catch fir easy it AMAZING how fast you can move when you think you can't) I still fry the fish though - about 150 last year
I can float a fly even when I can't cast it (or tie it). BUT I know where to float it. I still out fish any of them. They come to Grandpa to learn how to fish..... I watched three get their first last year. I used to be a carver, now I make wine and beer instead. Who da thunk?.......
You can go around things but you DON'T EVER cope with them. if you can't fix it, you change it. You take your meds (you ALWAYS take your meds.) You quit looking for natural cures and for things you do/did cause this (eating tomatoes for example) because you didn't do anything to cause it. If something you eat aggravates it then don't eat it. Exercise every day WITHOUT fail. What you don't use rusts.
Thankyou all for all your kind words and advice.l really appreciate it more than you realise.
This is a great discussion. Thanks to all of you. Blessings to Miss S and all of you.
"adjust and go around" - Great tips, TNLamb! I think we all are looking for ways to make sense and make peace with our new normal.
I keep hearing the refrain "bloom where you are planted" in my mind. I am Type A, corporate, and used to calling the shots in most situations. The shots are being called for me in many ways now. So...I'm learning to bloom where I am planted and live alongside PSA. Perhaps this is the journey for me all along?
Lorrie
I’m a couple of years into my diagnosis and still in denial. I put my fingers in my ears and “la la la” loudly when she speaks about my PsA.
Well not quite but I am in denial and still think of myself as a well person having a blip (a blip which means injecting myself weekly and taking umpteen tablets. Ho hum).
TNT is right about the exercise btw. Even a 20 minute swim a few times a week can make all the difference. Even if you really hurt and don’t want to, just trust us on this one…
Oh and wear sun cream. Mtx can make you sensitive.
Say that last bit in a baz luhrmann voice. I’ll stop now.
It’s lovely to hear how other people are managing to adapt to this ilness, I’m really trying but I’m really up and down in my mood.One minute I’m going to fight this and the next I’m in bits.Your all very brave people.l have never known before what it’s like to feel so lost.Im using all the comments as inspiration,l hope l am going to look back on this later on and give advise to others,thank you
You'll notice not one said they were always successful did they..... Biggest thing to learn, don't beat yourself up when it doesn't get dealt with they way you want.
Miss S said:
It's lovely to hear how other people are managing to adapt to this ilness, I'm really trying but I'm really up and down in my mood.One minute I'm going to fight this and the next I'm in bits.Your all very brave people.l have never known before what it's like to feel so lost.Im using all the comments as inspiration,l hope l am going to look back on this later on and give advise to others,thank you
It really does get better than this. Right now you may very well feel like you’ve been side swiped by life. It’s okay to feel out of sorts. I don’t think many of us could claim that we haven’t felt this exact same way. I totally get the up and down feeling that you’re having. One minute you are on top of it all. You are strong and proactive and plan to kick this wimpy PsA square in the tooshie. Then, seemingly out of no where, you find yourself in pain or exhausted, maybe disappointed by the medications or your doctor. Suddenly, it all comes crashing down and you wonder what you were thinking. (I’m not strong enough to deal with this! What was I thinking?!)
All I can tell you is that it does even out. You will find your groove. Right now, try to confront your feelings. Learn why you are having certain feelings, learn to change your thoughts that encourage negative emotions and those that make you pity yourself. When you can learn to recognize the negative emotions and nip them before they get carried away, you will find that you have much less turmoil in your life. It’s was the HARDEST step for me. I wanted to be ANGRY! I felt betrayed, let down, disappointed, hurt, alone, lost. I spent time throwing myself a really epic pity party :-). Then I decided that I was my own worst enemy and I was making things worse than they really needed to be. I will tell you again that it was so HARD to change my thinking. I used an eTherapist to help me straighten things out, and it really helped me find my way back to peace and contentment. Once you are able to to get this part of your life under control, you will be amazed at how much better you are able to handle the tougher things that come your way.
The first months with this disease are enough to test even the strongest person. There is so much going on: doctor appointments, physical therapy, medications, support group, talk therapy, trying to work, pain management, money issues, X-rays, MRIs, new medications, and the list can go on. Don’t feel like you are weak just because you are overwhelmed. IT’S OVERWHELMING! But, it does settle down. Once you and your doc get you on a good drug program, you’ll have fewer visits to the rheumatologist. When you have completed your PT program, you will be able to do the exercises yourself and on your own schedule. You will adapt to the new normal and then each small bump in the road won’t seem like a mountain instead. Cut yourself some slack. Give yourself time to adapt. Make sure to find something good in each day, no matter how crappy you may feel. In time, you will find that you are every bit as “brave” as the rest of us.
I really do understand how overwhelming and impossible living with PsA can seem at first. But, you WILL find your strength, in fact, you may surprise yourself with how strong you really are. It really is best to simply “keep calm, and carry on”, take on one day at a time, put one foot in front of the other…
I’ll be thinking of you, Miss S… If you need help, let me know. You are more than welcome to message me.
Miss S said:
It's lovely to hear how other people are managing to adapt to this ilness, I'm really trying but I'm really up and down in my mood.One minute I'm going to fight this and the next I'm in bits.Your all very brave people.l have never known before what it's like to feel so lost.Im using all the comments as inspiration,l hope l am going to look back on this later on and give advise to others,thank you
GrumpyCat,
Great stuff! Like others, I'm in the "first months" hustle and bustle and it's hard to see light at the end of the tunnel. Thanks.
Lorrie
Piganli said:
GrumpyCat,
Great stuff! Like others, I’m in the “first months” hustle and bustle and it’s hard to see light at the end of the tunnel. Thanks.
Lorrie
Hello Miss S, don't give up. We're all in this together.
Everyone’s been so lovely thankyou for the support.
I have been having a hard time too. I have no insurance and am waiting for assistance with getting humira. All I have right now is ibuprofen and that barely touches it. I have been having some depression along with frustration. Just trying to take it one day at a time.