I was reading another post and someone mentioned this topic. I agree with them. What is everyone's opinion. This happend to me today. Here is My opinion.
First of all, I have a very loving wife that tries her best to understand what i am felling, but if you never go through this personally, you just can not truely understand. My parents, sister, other close family members, and friends are the hardest to talk to. THey do not see me everyday, and just can not truely understand. I think that they are still very much in denial about me having some problem at the age of 29. Hard for a blood family member to execpt that thier child has something wrong. I was talking with one of my customers today about some changes to thier account and they asked me if i was ok. I told them I was and they mentioned that they tried to call me three times last week and got concerned when I did not call back, so they called the main office and our Office Admin, told them I was out sick. So I told them that had some test ran last week (spinal tap) and was at home resting. THey asked what the test was for and told them that the Neuro thought it might be MS. We finished the discussion about the account and I went on to another customer's account. My Customer went and got a employee of theirs to call me back and talk. The employee has had MS for 5 years. Just being able to discuss things with someone that could relate was a big stress reliever, even though I had never meet this person or talked with them before today. She invited me to a get together that she has very month with 15 other people that have MS. I still have not meet this lady in person, but she offered here home number, email, cell phone, and everything else to me. TOld me to call her anytime that I just need to talk and we could get together for coffee or lunch. I in return gave her my email, numbers, etc.
I have talked with my wife, family and the doctor, but never really felt as relieved I did after this 20 min phone call. I just feel like someone finally understands!
I think that's exactly what you needed and I'm glad it has helped you. I find that women more than men are likely to reach out to other who are in the same shoes.
I know when I personally went through the stress of a differnt medical issue, it was a big help to find others who have been in my shoes. I don't have MS, my husband does ... and he hasn't quite yet found that support.
AND ... you are right ... the blood relatives don't know how to handle this. They don't want to accept that this is a lifetime deal, one that is oftne manageable but won't go away. My husband is the youngest so it's tough to see the family "baby" struggling (he's 50 -- haha!)
His sister has insisted he be seen at the MS Center of a big hospital because one of her co-workers had a miraculous recovery from being wheel-chair bound and too fatigued to work to walking, working full time and to playing soccer w/ his kids ... but my husband is seeing Neurolgist who specializes in MS at a different hospital and getting good treatment. This MD knows of the treatment the other hospital is using and says that it's a harsh chemo treatment with some pretty big potential side effects and that they wouldn't give it to somebody like him who is walking, talking, and working! But all his sister sees is "the miracle cure" ... UGHH!!!
((hugs)) to you and good luck in getting the answers and support you need.
I know what you mean by the Sister. My Baby sister wants me to go to a bigger hospital that is 5 hours away, because she think that they can do more for me. She does not act like there is anything wrong with me, but more of a concern that her Big Brother that always watched over her, will not be able to watch over her anymore. She just wanted me to have the best treatment available. My father on the other hand comes up with hunders other things that it could (all of which can be treated and go away). He just does not want to except that his "Boy" may not be around longer than him. I keep telling him that, the doctors have not review all the test and that It could be nothing to worry about, but he does.
I hope that Your husband can find someone to help him or that can reach out to him. It does help to have someone that is in the same shoe. You sound like my wife. In the way she cares for me and tries to understand, but you can only understand so much. Stay there for him! Even though my wife can not truly understand, she is my best friend and just knowing that she will be there at the beginning and end of our challenges make me feel better than anyone else could. Even if they are in my shoes. They understand the pain, but are not the one that is there everyday, or the one that I took to be my wife.
Anyway. I hope You and Your Husband the best. Good luck.
That is a beautiful story,its so nice to know that there are good people in this world.I'll never forget my brother was dying back in 87',he was in the hospital for months and I met some of the greatest people in the waiting rooms.We all became a waiting room family and helped each other thru a tough time.I wish I knew where they are now,so I could thank them for their compassion.Wish you well,Dessell