Katie Katie Katie!!!
Ok you have to tell people what you are feeling. As a good friend of mine says, " So talk." Tell your husband that his not reading the literature feels very non-supportive to you. Tell him while you appreciate his interest in the med decision appointment, you wished he had wanted to support you on all the appointments. You could also bring this up with your doctor at the next appointment. "Doctor, I am having a tough time adjusting to the fact that I have this disease and my family is minimalizing my feelings by telling me I am making too big a deal out of this. What would you suggest? I am depressed and I may need counseling."
Tell your daughter-in-law that you find her cavalier attitude about YOUR health future to be extremely unsupportive and that you would rather not discuss MS with her.
I know I sound harsh but I have said these things to friends and some family members that have not supported me. You will have to pick your support team. You have asked if any of us has experienced this. You are NOT alone in this. We have all experienced this. Unfortunately it is the nature of this disease. If you can't see it, people assume you are fine. I am so sorry.
Thank you Gretchen and Rhonda for your quick response. At least having this forum to come into helps me relate to others and I dont feel so isolated. I have been married for almost 29 years to my hubby and he normally is supportive, but I think he is just tired of hearing about it. I cant help but talk about it becasue it is all so new to me.
I like BOTH of your advise and I am going to take it. Yesterday while having lunch with my daughter in law and her Mom ( whose Mom has the MS)...my daughter in laws Mom said." oh you dont need thoses meds, you'll lose all your hair! I told her that thats not true at all. Some people experiance slight thinning. But, geese, they both had to tell me how I am going to feel and how my futurw will be with MS. I just changed the subject. Period. I will NOT discuss anything further with them at all. Period.
As for my husband, Gretchen I am going to talk to him tonight. I don't know how he will respond. But I will let him know IF he is planning on going with me next Monday he has to at least watch the CD the MS Society sent me, or I don't want him there. AND...if he wont watch the CD, I will discuss things with the Doctor reguarding his lack of support.
My Mother is a retired RN, and I know she would go with me. It is just so hurtful that I feel I am not being takin seriously. I am not one to complain, usually I am the one taking care of everyone else.
I also recognize I need to put this matter in Gods hands and pray about it, which I haven't done. Duh! I thank you gals for your support and kindness.
For now, I am just going to lean on this foru, for my support until I can better understand it all and speack with my Doctor next week. I'll let you both know how it turns out.Hugs~Katie
Thanks Kathy, Willowman and Capa for the upbeat support. I am going to see if I can get some of those pamplets as well.
I had a heart to heart with hubby yesterday and I have a CD about MS from the MS Society he has agreed to watch with me today. I told him it means alot to me that he trys to understand this disease. He was much nicer about everything and said he is just frustrated because I have been seeing doctors all year and then to finally get a diagnosis and not be on anything yet to treat it was making him mad.
Monday he wants to go with me to my Doctors appointment. He said he will support me. Thats the day I find out exactly how they do plan to treat me, shots or whatever. I told him I at least want him to see the CD before he goes with me to help him better understand MS and to help me determine how we are going to treat it.
You are all SO AWESOME and strong and I respect all of you. Thanks again for your continued support and I hope one day to gove back and support ANY of you when you need it has you all have with me. Hugs~Katie
I am glad you got some good info that you have been able to use. On that doctor visit day, can you possibly make some time for you and your husband? Try to schedule some nice time for the both of you like perhaps lunch or a scenic walk or drive. Allow some down time where you can talk about anything.......not just about MS. That might be a bit of a stressful day for both of you and it might be nice if you had a way to take some of the focus off "treatment and MS".
My husband goes with me to all my appointments. We have to drive almost two hours for mine. We make a day of it which is easy to do in Los Angeles. We have lunch and go shopping or to a museum. We go for a drive in the Hollywood Hills. We make sure that we have some fun on a day that can be stressfull. I always look forward to my neuro checks for this very reason.
Good luck and let us know how it goes for you.
Thats a great idea. It takes us a little over 2hours to get to the Cleveland Clinic so yes, I will bring it up to him. He just left to go pick up some food for the grill tonight. I have had yet another bad day.......so tired! Left side spasm trouble in legs, just feel 'whipped'. I have been on the Amandatine for the fatigue and it seems like some days are worse than others, so not sure how well its working, but I plan to ask the Doctor about it Monday. I was so tired this afternoon I had to lay down for awhile and I still feel beat. UGH! Feel like I can't even think straight.
I'll be sure to let him know, although I have been hearing fatigue is something just about everyone with MS has. I will also post again when I get back from the Doctor to let you know what the Doctor tells me Monday reguarding treatment.
Again, thank you for your continued support and advise to help me get through this. Hugs to you Gretchen~Katie
Thank you D'Awesome and flutterbug. Yeah, I think my hubby is just worried. Yesterday he did watch the CD I have about MS from the MS Society and although he still seems indifferent, he wants to be with me this morning when I go to my appointment. We leave pretty soon and I will post later today to let you all know how I made out.
I guess when I think about it, my hubby has never been one to do well in medical circumstances. I know he loves me. I think not knowing all the answers really bugs us both and not knowing what the next day will bring is frustrating. I am hoping to find out about the treatments today and and hoping the doctor can help my husband understand this diagnosis better. I don't want him fussing over me, just want him to be more supportive as I don't have all the answers either.
That said, I am being optimistic today. It's going to be a good day. Together, we will do what we need to do a day at a time. My daughter in law stopped in yesterday as well and even she seems to be more understanding about it , admitting she realizes theres many faces to MS. She borrowed the CD and wants to see it as well and has offerred support any way she can help me. Shes a wonderful person, like my own daughter to me. SO THINGS ARE LOOKING BRIGHTER!
Hugs to all my friends in the forums~Katie
Now go and tell them both how much you appreciate their support!!! I am so thrilled for you, Katie! This is great. I will be thinking of you and looking for your post. I hope you have a positive appointment and that you come away with the strategies that puts you in the warrior's seat! Fight!!!