As has all ready been discussed on this site before; frustrations with families understanding our disease. My mother has had difficulty understanding what this disease has meant to my life. She continues to "suggest" exercises, foods, treatments, etc. Unfortunately it tends to be for osteo arthritis or worse just plain scary. I have been a nurse for 38 years and do try to educate myself to the disease and sometimes her suggestions are hurtful. I have tried to tread gentle thinking maybe it was scary for her. Then realized i perhaps have been to gentle and she is missing the point. Yesterday was an "aha" moment for me; she had mailed me a suggestion for an exercise class where she lives, not where I live and it was geared to OA. I am an uncontrolled PsA and have had a real problem with overdoing it. My Rheumy tells me constantly to cool it at leaast until my joints are less inflammed and vulnerable to injury. I decided to take the high road when I called my mother and thank her for thinking of me and gently pointed out it is for OA not PsA. I offered to send her some information so she would know the difference and she said, " no thank you I am really not that interested." Needless to say my jaw fell, I ended the call shortly and politely but have been in a state of shock since then. I really shouldn't be, it truly/saddly is her MO. At least I know where I really stand:-(
Cheerful and stupid, that may be your best bet with your mom. That's a real shame that she can't be supportive, but you can't change her.
I'm new to this website (and I am so happy to have found it) but it sounds like we will have to take over the mothering role for her so do what your doctor says is best for you, read past her advice and don't discuss it any more with her! I have the same problem with my husband! His answer to my pain is "go out an run!"
Thank you Altmom and Stoney for your support and pearls of wisdom. My husband is away visiting his father this Veteran's Day who was a "Screaming Eagle" 101st airborne in WWII. My husband served as well. We lost his son in Iraq in 2007 so maybe my mother's words may have hurt more than usual. I called my sister and she and I ended up laughing about our Mother's social skills! It's a wonder my sisters have such good social skills with that model!! Thnaks again. M
OUCH! Sorry Michael. I've been having similar issues with my Dad. Ironically he's the genetic psoriasis link in the family and I know he suffers with joint pain (probably undiagnosed PsA--but he's too bull-headed to seek advice/treatment). His advice to me has included fish oil (check), coal tar (shampoo--check), and concern that the MTX is "too strong". Hmmmm. I have sent my Dad info and he has read up on it but...what would you call it? Cognitive dissonance? Anyway--I appreciate your sharing this. It does make you wonder if people would react the same way if you suddenly showed up missing a limb or with a diagnosis that was more readily understood. So here's a "grrrrrrrr" for those who don't/won't get it. ANd here's a {----0----} hug 'cos you probably need one! Cheers ~ Jane
Thanks Jane. I did need a hug today. I am amazed at how many people on this site have someone important in their life that is similar. I take it as a cross section of people, not unique to relatives of PsA. Makes me wonder if I have been similarly insensitive. Sure it was in a previous life as Lord knows I would never be that way now! Warm hug back at you.
You poor thing. Keep on keepin' on. Hugs.
I'm so sorry, Michael. I can't even imagine how that made you feel, and I'm tearing up just thinking about you. I hope and pray you have others in your life who care and are there for you. As hard and awful as it is, we sometimes have to distance ourselves from people who toxic to our well being. I've had to do that, and while it's not easy, my life has been better for it. Any time you need someone to listen, I am here for you. Many hugs and prayers are sent your way, my friend.
What can I say Michael other than I’m so sorry and I’d give you a big hug if I could…hurtful things said by your parents always cut deep and however much you think you’ve heard the worst from them they can always manage to sink that little bit lower with the greatest of ease and just no thought for your feelings. X
Thank you so much Sheila and Louise; believe it or not I did feel hugged by your kind words. I really should be use to my mother by now, 55 years should be long enough to get it but I find sometimes I am shocked by her indifference. I bought the book you suggested Louise on Psoriatic arthritis and was going to photo copy some pages for her. Then I realized it might be too clinical for her so I was going to print off some things from Web MD. Instead I ordered a book called Will I Ever be Good Enough; Healing the Daughters of Narcissistic Mothers! It's about time I faced facts. I am sure I was a good mother to my sons but perhaps there are still ghosts to blow away like a kiss. I love this sight and thank you for all your good support. Sheila I do have good people in my life. My husband Jim is wonderful. We were married in 2007 and both felt we had finally met our soul mates. Unfortunately we lost his son, Adam, the same year in Iraq. We were under quite a bit of stress and my disease seems to have flared since then. I am injected both mtx and Enbrel but haven't been able to get on top of it yet. Thank you again for your warm thoughts.
Oh I really needed this post! Huge huge hugs to you and I am so sorry that you have someone in your life who just doesnt get it. That person for me would be my mother in law (as if that realtionship was not already strained enough I had to go and get sick ughh!)
Wanting to be understood used to be a priority of mine until recently when I decided to stop trying to educate anyone who was not willing to accept the fact that this disease is what it is. I stopped trying to counter everyones arguments. I no longer feel the need to convince them that their crazy diets, exercisie, odd home remedies, or any other absolutely non helpful advice that they are offering will cure me. I simply decide to take their advice and "helpfullness" with a smile on the outside. On the inside of course a war is being waged but I keep it to myself. I take the "wonderful words of wisdom" and throw them into my mental trash can. I find that if i want to have a tolerable relationship with some people but most importantly my MIL I have to move forward from the moment before the advice was offered as if it had never been offered because if I let it in, dwell on it, it eats at me and causes an emotional pain that then becomes the straw that camels back when things in life become hectic.
I appreciate your kind words sybil. Unfortunately i think I am seeing something that has been part of her all my life. I just didn't see the depth of it. I remember now a lot of things in the past that didn't make sense that do now. It makes me very sad. But you are perfectly right it is what it is and is not going to change. I am just mourning about it out loud. I have a sister who has stage 3-4 cancer who is having some major surgery at Mass General the beginning of December but when I last spoke to Mom all she could talk about was a birthday party for a friend she is going to at that time in Connecticut. Well from Vermont you have to go through Massachesttes(sp?) to get to Connecticut. But she did not even think about doing something nice for my sister as she passes through. Really oblivious. i use to wonder if she didn't "see" things as she can't deal with it but I see now that isn't it. She really sees herself as the center of the universe and anything else is happening to the supporting actors to her stardom! It is what it is. When she had the shingles last year we all had to hope to it! Really kind of sad. I am not sure how my sisters (and I!) ended up somewhat normal!
Its very hard to accept your own mother is not ‘there’ for you, after all this is what mothers do? what they are by definition? It doesn’t matter how old you are you always hope there will be that moment when you know they value you simply because you are their precious child. My mother died in 2008 and I did get a glimps of that moment as she lay dying…I’d been her carer for 6 years during which time I myself was going through a hellish time, but I never let her know, because I could just not face the extra burden of her disapproval on top of everything else.
I hate to say it but I felt nothing when she died, a little sadness perhaps but I had grieved and mourned the ‘mother’ I had never had for years before. She had gripped my hand and just said the word ‘please’ before she drifted into unconsciousness for the last time…I don’t know what she meant but I just told her ’ let go now mum, you don’t have to fight anymore’ and she passed.
All I could do is treat my mother with respect and dignity, after all she was my mother, but I never relied on her for support of any kind because it would not be there.
I hope you get some sort of support from your mother all children need that but if its not in her nature then its just not there.
My husband and my son are very supportive. And I worked with a therapist long ago who taught me how to re-parent myself as I parented my son. I also get a great deal of support form my fiends too. And from this site also. I am glad there are other sources when Mothers just can't mother. A prayer and thought to all of us.......
I so share this frustration with you. Everyone seems to get tired of the fact that you can not do the things others do. The risk of injury and exposure are so high that avoidance is your only option.My family gave up all hope on me and started going behind my back to plan things and complaining to each other about "crazy mom". It crushed me. Even my husband who has been an OA disabled patient for 20 years does this to me. This is how I ended up so depressed I did not want to live. I know now that it is their problem and not mine. I stood by them while they were children and they kinda kicked me to the curb last year. It hurts,but you are strong. You keep on sending the info until it crams her mailbox. Someone around her will see it and bring it her attention and you wont be the one to "enlighten" her so to speak. Good luck Michael I'm rooting for you.