Tips and coping mechanisms?
I’m a planner so being diagnosed really has me thinking about what I need to do long term to minimize the impact of MS on my life and family. Do any experienced MSers have any tips?
For instance, I live in a two story house. Should I be saving money and getting the house ready to move to a one story in a few years?
I’ve started using apps on my phone to write lists for EVERYTHING, a calendar app for the whole family, and the note app so I don’t forget anything. I also have a notebook I use at work and as soon as I get back from a meeting I write an email to everything reiterating what was discussed so I have a record I can keep to refer to again. I’m also trying to figure out how to make my house more oreganized so I don’t lose as much stuff! Any other tips for not losing stuff or locking myself out of the house (again)?
I have an appointment with a neurologist who’s an MS specialist in a few days. Should I ask for a standing prescription for prednisone in case I have a relapse on a weekend, or can’t get off work to go be seen right away?
I’ve applied for VAhealthcare benefits again (recently got off active duty), and am working on getting my medical records together to file a VA claim. Any tips for that?
Anyway, any tips on how to organize and plan my life around this would be really appreciated! I’ve really liked reading the posts on here so I have a better idea of what to expect so Thank you!
Hi @mamawals . I've just read your profile. You thought you were getting old and stiff! At your age! You're in your prime. :wink: Anyway, in a way it is wise to "prepare for the worst and hope for the best". But, the MS landscape is changing. MS is no longer the disabling condition that it used to be. There are now treatments available that slowdown, or even stop, the progress of our MS. There should be no need for a standing prescription for Prednisone. I would hope that you weren't allowed one, as Steroids should be used sparingly. Anyway, a relapse can only be identified after 24-48 hours. As for tips and life hacks, I came across this webpage recently, which had quite a few good ideas, not that you would need them all now:- https://multiplesclerosis.net/living-with-ms/life-hacks-msers/ This Forum has also had some shout-outs for these types of ideas. Use the Forum Search Function (magnifying glass, top left) and search for "hacks". I'm sorry, I can't help with VAhealthcare benefits claims. I'm in the wrong country, but hopefully our American members may be able to advise you.
@mamawals ... @stumbler is right about steroids, they are detrimental to your already battered immune system. I use them as a last resort and stop immediately when I see improvement. Another thing you should look into if or when it becomes necessary, is contacting your local authority about aids around the home. I have had bathroom rails installed and have had a bannister put in place in my garden to help me up a small set of stairs. Stair-lifts can also be provided by them in some cases. A chat with an occupational health adviser may help you discover further levels of assistance that you may have not thought of. You can get a referral to see one from you GP or your neurologist. Remember... If you don't ask, you don't get.