I don’t quite know now to ask the q, I have been trying to mentally workout what I want / need to know so that I can ask, but I can’t quite define. But, as you guys hopefully will instinctlivy ‘get it’ hopefully my poor definition won’t matter.
ok, hear goes, lol. I know I have Rrms, I know my name…a little confusing as I use a different one on here. I know how I feel at any given moment, But, although I have read all the info, how I physically feel in relation to what I do in any given day makes no sence. I don’t get it ???
i want to accept my ‘new’ reality but I can’t make sence of it. One min I feel I am back in control, the next, for no apparent reason I feel so so shit I want to just sit down & cry. To clarify, I am not depressed, if I was, I would ask for the right support. What I am after is understanding of what I need to accept, how to best manage my fatigue/symptoms.
we all refer to ‘doctor Google’ as a strange & dangerous place, so I haven’t. But their must be some good info available but where. Am I a big girls blouse for not asking Google?
i get that fatigue is a recognised issue, I get that a relaps may have temporarily effects or they may stay. But I don’t ‘get’ my day to day on / off symptoms.
So, what can I read ? I Need to better understand, but I do not know where to find safe, accurate information.
I haven’t read them yet Sarah but after being diagnosed (24/10/17) the neurologist told me to go on the MS Trust site for information and to order booklets. I must have ordered about 20 (all free with free postage) on all subjects from how to tell your children to explaining the individual DMD’s etc, The only one that I have read in any depth so far was the one aimed at 10-16 yr olds lol (I read it before giving it to my 12yr old) and I have started reading the DMD one. They are both very good. You can also download all of the booklets to your computer and read them there if you prefer but I just wanted info that I could have at my fingertips or to flick through when I wanted/needed to.
If you go on their site (which incidently has loads of info too) and on the home page, in the very top left hand corner it says ‘order a publication’ If you click on this it will bring up all of the booklets that are available (there are loads)
Having a diagnosis of MS is something many of us have yet to ‘accept’, even after years.
There are times when I could just cry for the bloody shame of my life that’s been robbed from my by F’ing MS. And I’ve had it over 20 years.
So don’t feel like you should be all ok about it. For what it’s worth, I for one think you are doing a great job of ‘handling’ something so crappy that’s come walking uninvited into your life, and the life of your friends and family.
In terms of Dr Google, Belle is quite right, the MS Trust has loads of excellent guides. To look for something specific, what I do is type ‘MS Trust’ and the subject (eg ‘relapses’, or ‘fatigue’) into the search box of your internet browser.
Or just start with MS Trust and see what you find. Their guides are all quite easy to navigate once you’ve found the right place, and are straightforward to follow.
Otherwise, use the guides on the MS Society (ie here).
And if there’s anything specific that you want to know, just ask. Someone here will know where to look if they don’t already know. Just remember, that people like me may have had MS for a long time, and know quite a lot, we can still be wrong. So it’s a good idea to get information from a reputable source. That’s why I try to put links on my posts to places where people can get accurate information.