I miss who I was before PsA
Hey everyone. I’m 35 and have two lovely little boys and I’m married to my husband. I miss my old self. Having been in a near fatal car crash and years of investigation I was diagnosed at 31 with PsA due to my toe swelling up like a sausage on my left toe. I had years of crying through the night, begging God to cure me, wondering if I was insane that no one- until rheumatologist in Glasgow gave the diagnosis of PsA. At first I thought great I’ll pop some pills then I’ll be grand! Boy, was I wrong! A pill box and injections later here I am. Battling through the bad days and so grateful for good days BUT I miss my old self. I’m morning the person I was before my body had all this pain, going out with friends, doing sports or simple walks, imaging being the mum to run around with my kids, being able to have a sex drive ….. embarrassing (I know) but I miss her… I have really low days I don’t tell anyone about. Days I’m in so much pain but drag myself out my bed as my husband and my two little people need me…. However, I am on here as I feel so alone. I have no one who really understands what I am facing. I get a lot of “ your too young to have that” “ you would never know Val” “ you don’t look unwell”. I really struggle with these remarks and massively effects me on my low days. I’m very much a person who just “gets on with things” and determination is a driving factor of my personality to pushing through hard hard days…. I’m trying to do the school run, do my job, be that wife, friend, sister, daughter to everyone and my PsA has stolen that from me. I can’t work out. Left elbow is stuck, two surgeries but they can’t seem to fix. Had my shoulder fixed through surgery and waiting for my toe surgery as written above, a bit later my toe turned into a hammer toe. Surgery if that’s something you need as PsA effects joints so badly and damage can’t be undone. I can only speak from experience that if its so painful why not try? It could help… or it might not work. Never know until you try. I’m trying from this babble to convey that this is the only place I can find peace of mind that I am not alone with my symtoms by people going through PsA, sharing experiences and remedies. But am I the only one who grieves their old selves and struggling to accept my limits and get others to accept them too??
Hey
, we're so glad you found us and felt comfortable sharing here. How you are feeling is completely understandable, and you are definitely not alone in this struggle. I'm sure I'm not the only one here who can relate to missing your pre-PsA self. It is really difficult to come to terms with how much our lives have changed (and PsA affects pretty much every area of our lives) and everything that we have to cope with on a daily basis. And yes, these comments from others make everything feel ten times worse. They just highlight a lack of understanding and can make us feel very alone. I hope you'll find this community a big comfort - everybody here understands and can empathise with the struggles that PsA brings.
I found a couple of articles that I think may resonate with you. In the first, Vickie shares about missing her "old me": https://psoriatic-arthritis.com/living/old-me and in the second, Leanne talks about how her life has changed with PsA, and looks at saying goodbye to her old self: https://psoriatic-arthritis.com/living/saying-goodbye-old-me I hope these help you feel a little less alone on this journey. Please remember that we're all here anytime you need support or just want to talk to people who truly get it. Gentle hugs! -Catherine, Community Moderator
Hi
you are not the only one. As has shared with you I wrote about missing the old me. It is hard when every part of your body hurts to do the things we used to do. For me it is working in my flower beds which now one flower bed takes days of work when I used to be able to do my whole yard which is covered in flower beds in one day. The sex drive I totally get. I will be turning the double nickel in just a couple of months. That drive is non-existent for me. I guess I am lucky in that my husband is older so it's really not an issue for us but there are times I do miss "her" as you put it.
I wanted to make you aware that the National Psoriasis Foundation has a program called One to One that will pair you with someone who has experience with PsA. They can offer information or support when you need it. You can find out more by going to their website at www.psoriasis.org. Also please know that we so understand what you are going through. This is a judgement free zone. No one will judge you here. Having psoriatic arthritis is hard enough without having to hear "you don't look sick." Sending you gentle hugs. Vickie, Team Member
, grieving who we were before being diagnosed with PsA is common to most of us. Early in my diagnosis, it was almost daily. As the years have passed, I feel the grief less but it's just as powerful. I think it's essential to give that grief a voice when it shows up. I'm glad that you found this site.
Over the years, I have learned to accept that this disease is part of my life now and wishing that things were different takes precious energy. I do what I can to take good care of me - eating healthy, exercise, taking my medications, etc. Being here with people who understand is a big part of taking care of me.
I also recognize that there have been some positives that come with living with PsA. I am more resilient. I have more compassion for others. I quit fussing about small stuff, like the dust collecting on every surface in my house. The slower pace of life because of my aching joints allows me to be truly available to people that I care about.
Give yourself time and lots of patience as you adjust to what your life looks like now. You'll do an amazing job! And the people that love you will admire your honesty and strength and learn from you.
Here's a quote that I like " What makes night within us may leave stars." - Victor Hugo Just maybe you are making stars!
