I have written a few blogs about being a child of a Mother who had MS.
I have had several responses, and followers. I am writing this because I am a dumb blogger and do not not know how to respond to other’s posts. I would really like to do that. Perhaps someone could tell me how to respond to their posts? I feel so dumb.
I know some things about the arch enemy, but not all of the new developments with drugs and such. However, if you are newly diagnosed, expect to go on a roller coaster ride for a while. It is important to give yourself time to adjust. It’s pretty shocking to be told you have this disease, or any disease for that matter. You suddenly find people who know people with MS and they are either fine, feeling better, in remission, or in a wheelchair. People mean well, they just don’t really get it. I think any disease is scary and growing up with MS has made me completely hyper about my health and everyone else’s including the dog’s. Seriously.
I have had so many sorrows with my children, my parents, my friends….with health issues. There are some true things about MS. You will not die from the disease itself. If a medicine isn’t working, try another. If you don’t like the doctor, find another. Take control of your own health, but be gentle with yourself. Give yourself time to grieve and to adjust. Read about alternative medicines. Massage therapy can sometimes help. (I have a friend who works on MS patients) (of course…)
It depends on your age, but if you are a woman and in your mid 30’s, 40’s or 50’s, you are also probably menopausal. (menopause)– it’s true that MS mimics other diseases, and has been known to cause memory problems, but so does menopause. Combine having MS and losing your estrogen, and you are not a happy camper. Lots of posts coming on Menopause; oh the joy of being a woman! It is also true that MS has all kinds of creepy symptoms, and many of them come and go and wreak havoc on your body as they please. The symptoms are sometimes different and until you get to know your new body, they can drive you nuts. Some do not usually last for long though. Example: Migraines. They are a real problem. When my mother would get them, it was a ‘Migraine Day’. Tell that to a seven year old. I learned pretty quick that when mommy has one of those days, I had better do all I could to be quiet, feed and walk her dumb dog, (I love all animals but he was an awful dog)….make sandwiches for dinner, and creep down the hall. No noise allowed!! These things just happen with MS. They don’t last forever though. Some symptoms are worse than others. Some last longer than others, some last forever, some go away. Remission is absolutely possible. You will die someday, but doubtful from MS. It just makes you miserable and scared. (not diminishing it)….
The important thing to remember to the newly diagnosed person is to be kind to yourself. Rest when you are tired. Do not try and push through because your body will not allow it. Furthermore, listen to your body, but don’t go crazy. Belly breathe. Slap your left hand on your tummy, breathe deeply for a count of ten, all the while making sure your belly is rising. Keep doing that nice and slow until you calm down if you are anxious. If you feel sorry for yourself, please do. Cry all you want, and keep on crying. Go somewhere and scream, (otherwise some busy body will definitely call the police). Be brave but always remember to put yourself first. On bad days, do whatever is necessary to feel better. On good days, squeeze every drop of sunshine out of them that you can. If keeping a journal helps, do it. If blogging helps, do it. If joining a support group helps, do it. Online forums? Whatever it takes. Control what you can but don’t even try to control everything because it is impossible.
All of the above I have done when I learned not long ago my son had an incurable heart disease. (see previous posts). I am just happening to have a normal day. I have the ‘cries’ several times a week, and YES most people in my little world think I am nuts. I don’t care. I hurt for him, so I cry my eyes out, scream at the top of my lungs, pray, punch my pillow (don’t want to put a whole in the wall), and do whatever I can to let the frustration and anger out.
Most people think women are crazy anyway, so if we act that way, they probably don’t even notice….