Coping with surgeries, pain, fatigue and discouragement
Hi. I’m not usually one to reach out, yet I’m needing some words of wisdom. I have both osteoarthritis and psoriatic arthritis. I am 73 years old and was diagnosed with PsA about 11 years ago. I have been on several biologics and Cimzia seems to work the best for me at this time. I also inject methotrexate weekly. In the past 5 years I have had 5 surgeries, 4 of them to fuse joints in my feet. The other was for a thumb joint. My biggest problem appears to be losing cartilage in my body and having pain caused by bone on bone joints. I also have soft bone in my feet which makes it difficult for the surgeries to heal properly. In the last 15 months I have had 2 surgeries on my left foot for loss of cartilage and bone on bone pain - fusions, to be exact. My problem is that since my last surgery, I just haven’t gotten my strength, energy etc back. I feel like I have lost my core, my “me”. The foot surgeries were long recoveries, I didn’t walk without assistance for 3 months each time, didn’t drive, was home most of the time. However, it’s been 8 months since the last surgery. I feel like I should be better, more energetic, have less pain. As you folks know, as more & more joints become involved, the more chronic pain we have, and I am no different. I have a strong faith and believe that God can use this suffering for good, and yet I still get discouraged. I know I’m not clinically depressed, I’ve been through that and this is not that. I am discouraged, though, unsure of how to get my “me” back. I’m now swimming 2 or 3 times/week, riding a stationary bike or regular bike as able and walking some. I know diet, exercise and staying social are all important. Sometimes I’m just going through the motions and exhausted afterwards. Any ideas or things that have worked for any of you would be so helpful. Thank you!
I am so glad you reached out, I understand that it is not always easy to do and talk about things that may make us feel vulnerable, I applaud you for reaching out.
It sure sounds like you have been through the most. There are so many surgeries and long recoveries, that are sure to take their toll on anyone. while you may not be clinically depressed as you have said, have you considered talking to a therapist, maybe just for one or two sessions, I find that these can be helpful just to get me on track and get some great face-to-face advice on how to move forward from a more professional point of view.
That being said I would also concentrate on things that bring me joy, maybe, not just the things that are good for one from a health perspective. for me, it is gardening, listening to music, and hanging out with a friend for tea.
- Clair ( Team Member)Hi Clair. Thank you for your reply. You are so on point. It is easy for me to get lost in the weeds of the “shoulds” that I forget about about joy. And when I really have to give thought as to what brings me joy, I realize that something is truly amiss. I will ponder these things and see what I can do to put them into action. I appreciate your input so much! Blessings, Francesca
Hi
, I just wanted to echo Clair and tell you how glad I am you reached out here. You have really been through a lot, and I can hear how difficult it has been for you, especially after this most recent surgery. It certainly makes sense that you are not quite feeling like yourself, and I agree with Clair that talking to a professional (even if you know it's not clinical depression) might be helpful just to get over this "bump". Of course, finding things that bring you joy is also so important. Can I ask what types of things you might've pondered and decided to do? Please know that our community is here for you anytime. Sending you gentle hugs. -- Warmly, Christine (Team Member) You are so welcome! That is such a natural response. We all get lost in the weeds sometimes, I find myself in that very place at the moment.
How are you managing today?
- Clair ( team member)
Hi Christine. Thank you so much for your kind reply. At present I am exercising more and making sure I spend time with others, which is important for me as my tendency is to “hole up” rather than reach out. It’s a lot easier to reach out to others who are hurting than to reach out for myself. This is a life long struggle for me. I will keep you updated as things progress. One thing I have accepted is that this will take time. That gives me comfort. Thanks again! Blessings, Francesca
, we're very similar. When I am in a lot of pain or recovering from surgery, I prefer to hibernate. If a family member or friend needs me during that time, I paint on a smile and fake it. My husband has encouraged me to be more honest with others about how I'm doing. Gosh, its tough to do. I don't want to be perceived as a whiner. On the other hand, I can end up feeling a bit resentful. Over the years I am getting better at letting people in. I am careful though because some don't understand an illness such as ours.
Journaling and my faith help me through the bumpy patches. I wish you all the best. It seems to me that you're very self-aware and that's a big plus!good for you! I agree that reaching out to people can be such a hard thing to do, especially as the kind of people who tend to "hole up" when struggling (I'm the same way). Good for you for taking care of yourself, whether it's exercising more or reaching out to others. And, please know that this is place you can always reach out to as well. Sending you gentle hugs! -- Warmly, Christine (Team Member)
Hi Mary Lynn, Thank you for your response. We have lots of similarities, for sure. I never want to be a Debbie Downer so the smile goes on for me too! However, the other day I was with a friend (who knows I’ve been having a difficult time) and she talked to me about being honest with people who love me and are reaching out to me to help in whatever way they can…and sometimes it’s just showing up and listening, which is pure gift! I needed that interaction with her and our eyes brimming with tears said it all. I’ve been working on telling the truth in love, and this is another example. Isn’t it interesting how God places people in our lives to bless us, nourish us and hear His voice through others. Thank you again! I’m so grateful that I reached out to this community!
, the winter was tough and discouraging. My current treatment, Simponi Aria infusions, is not working well. I saw my rheumatologist on Friday. He's switching me back to Cimzia. Fingers crossed it will work! Winter can be so hard to manage, and I find that so frustrating because I love winter, the grey cold, and rainy weather. It however does cause havoc with my psa and pso.
Keep us posted on how you manage with the Cimzia. I do hope that it brings you some relief soon too.
- Clair ( Team Member)
