4 years ago
Feeling almost human again… also family question?

7 days after steroids infusions and I am starting to feel human again! So happpy 😀 Leg weakness better for the most part. Hand still numb but bareable. The steroid crash was terrible! I wonder if I should have insistend on a taper pack to take with me or if that would have just prolonged the side effects.
My TN still hurts like a bugger though and for some reason on both sides… which is weird.

Still haven’t told family besides my husband and sister in law (who is my best friend). Anyone else not want to tell family? I just cringe thinking of their reactions, over reactions and / or frustrating comments)…. but at the same time I know I will have to since I can’t keep limping and blaming it on a “running injury” when I can’t even run anymore 🙁

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The steroids are just starting to do their work for you. You should continue to improve over the next 6 weeks or so.
Talking to family is a problem. No-one has much knowledge of MS, until it bites you on the ****. Try and get some literature to hand, so that you can pass some knowledge over.
Check the MS Trust website for all manner of publications, aimed at all ages :-
http://www.mstrust.org.uk/shop/products.jsp?catid=36

@stumbler Thank you! That MS Trust site is very helpful and informative. I especially like that it has information for talking with children about it what it means to have MS. My daughters ask questions at times when they see me struggle (they are 8 and 11 yr old) but it’s so hard to know how to give them the information they need while also not worrying them too much.

@cwpeace4, that’s my pleasure.
Order some of their brochures, then you can go through it with your children.
My children were about the age of yours when I told them about me. They need reassurance that you’re not going to “pop your clogs” and that you may need them to help you with chores from time to time!
It actually helps with their upbringing and their development as caring, sharing adults, which is what we all want.
🙂

I will definitely grab some literature from that site. I agree that it will help them not only with trying to grasp what MS is but also help them to learn compassion, caring and helping others. My girls have stepped up lately when they see me tired but I can still see some hesitant (what is wrong with Mama) look on their faces as they know the old me that is never tired, always busy, running everywhere, and it’s like someone pulled the reigns on that person and said “Whoa there…. you have to slow down”. This will help them understand why. Still not going to bother with rest of family yet. They are a pain. lol

@cwpeace4……..TELL your family. “Running injury” is just bollocks and lying to them. They should be your 1st line of support. OK they will be shocked & take time to adjust but this is something to work thru together.

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