I am new to the group, and just need to talk to others who understand!
I was misdiagnosed with chronic pain syndrome, then fibromyalgia. In 2015 I began falling only to the left. That’s when they finally did an MRI and I had some lesions but not like now. It’s hard because I went through infertility for 10 yrs and on my 3rd invitro I finally got a baby, I was 38. After the pregnancy everything went down hill. I don’t know if it was the real hormones or all the synthetic ones to get pregnant. And now, I can’t even be the mom like I wanted to be. It’s so disheartening, he is now 15 and by late afternoon I can’t do anything and of course that’s when he wants to practice driving or go shopping. I also have the wet foot feeling I was reading about, and the abnormal smells, to me it smells like urine/ammonia it’s horrible. I fall a lot, it’s like I have NO control over my feet and legs. My muscles get so weak, I slur my words, there are times that my face acts like I have tardic kinsia or however it’s spelled. Sometimes I send random texts to my siblings and actually have arguments and fights. The only problem is they remember it and what I said, but I have no clue as to why they are mad at me. And I’m so tired of saying, no not today, I don’t feel well. Just for everyone to say “of course you don’t” they don’t know how bad that hurts.
, Sounds like you've really been through a lot, both before MS and since diagnosis. It's hard to not be able to do all the things that you feel you should do or want to do. I would suspect that your son who has grown up with MS and sees firsthand what it does to you really understands. Finding another option for driving practice while you are fresh might mean waiting until the weekends, perhaps a Saturday morning activity. My unusual smells end up being litter box scents or bananas. Strange. Have you talked with your neurologist about working with a physical therapist to build strength and improve coordination? PTs can also help you figure out how to manage fatigue throughout a day. Best wishes, Lisa, MS Team Member
Yes, you would think he would be understanding and he used to be. But now that he is 15, remote learning, ( we are together 24/7) and puberty. Everything has changed and he can be so mean. My husband and I have spoke to him about how he has been treating me, telling me to do it myself, it’s my job because I’m the mom. Sometimes it’s all I can do NOT to smack him. But I don’t, I wasn’t raised with spankings and I haven’t raised him like that. But this teenage attitude has got to go. He is basically ok when my husband is home, but all day long all I get is rudeness, and smart mouth. It makes me hurt so much more, the stress is unreal. I hardly slept last night due to muscle spasms and jerking and he just won’t let up.... ready for 18....
I'm so sorry that your teenage son is being cruel and insensitive. Let's hope he grows out of it soon. Sounds like you have a very supportive husband! Does he have your back about those family conflicts and try to explain things to them about how MS affects you? You need all the support you can get. And we are always here for you! Thinking of you, Kim, moderator
