I was diagnosed with PPMS 3 weeks ago, but I guess I am still in denial. I have got another Neurology appointment next week and I still think they will say there has been a big mistake. I am spending most of my time worrying about how to tell my family. My children are grown up with children of their own, and my Son has a 7 year old with major health issues. My Mum is in her 80’s and has recently been widowed.
There is a big part of me that thinks maybe I should just not say anything to them but I want to be able to explain to my children especially why I cling onto the walls when I walk sometimes, and why I don’t run after the children ( I also have major problems with artritis but tha’s another story). I especially want to tell my Mum that I am sorry I have to sit down more often than she does, that when we go places I wish I could tell her to wait in the car whilst I run into the shop and not the other way round.
How did other people cope with telling people? I would be really interested to hear people’s stories, thanks
Hello Juniper
I think 3 weeks is such a short time to have even absorbed the diagnosis, let alone worry about how you tell, and how it will affect your family.
If you’re still half expecting it to all have been a big mistake, and that actually you have something easily curable, then clearly this is a bad time to worry about telling your children and mother.
Why not put off the whole thing until after next weeks appointment, then tell your mother and your children. By then you may have worked the diagnosis through your brain and made some decisions about how you are to co-exist with your uninvited ‘guest’.
It was simpler for me, I’d had tests 5 years prior to diagnosis and was erroneously told I didn’t have MS (nowadays I think the evidence would have shown that I did have MS, but as there were no treatments in 1997, it made little difference). This means I’d already mentioned MS to my family and wasn’t a shock to them. As I’m not a parent, and decided upon diagnosis that I would never have children, really it was just my mother, who was a lot younger than yours and fully able bodied. So a completely different situation. I had been with my now husband for 6 months upon eventual diagnosis, so that wasn’t an issue either.
But for you, I should take some time, get it clear in your head before you have to start talking about MS to other people who love you. They will have questions and worries; until you understand your own disease, it’s likely to be difficult to begin answering.
Best of luck.
Sue
Thank you Sue. In truth I have been hobbling around on crutches for 3 years, I have been diagnosed with hip dysplasia and had a knee replacement that has become hyper-mobile and needs re-doing, and the other one also needs to be done. So my family know I have mobility issues but not the main reason why. Turns out the hip dysplasia etc was masking the PPMS according to the Neurologist. But I absolutely agree, I am still too hazy about it all myself right now. Thanks again, I do appreciate you taking the time to leave a reply.
Your post has worried me a bit to be honest. I have two daughters both 44 and 47. They both have health issues one was diagnosed years ago with M.E. and the other one has neck issues, and both have HIP DYSPLASIA. and hyper mobile. My eldest is so bad the chiropractor had to do a readjustment and said it was the worse he had seen.
My younger daughter always seems to be ill and in pain more so for what she has.
I worry all the time about them both.
The trouble is hypermobility can give you so many of the same symptoms as MS.
I would wait until you have your appointment. I have PPMS and i have a lot of mobility problems. I try to walk more which results in more spasms and charle horses, and fatigue kicks in. I have nerve pain so bad in my left foot some days i could cut my foot off for the pain.
Just take it easy and see what happens, but I think your family have the right to know, but then i wish i hadnt said anything as I wonder if my daughters are picking up on my illness and doing their own worrying if that makes sense.
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