Living with MS – a personal perspective 

"Manage your condition, don't let it manage you"

Officially I am a ‘service user’, unofficially I’m Ros and I was diagnosed with relapsing/remitting MS in 2009.   Please bear in mind that the information on this site is my personal view of living with MS - I am not qualified to offer advice, this is about my experiences.

This site shows some of the tools, services and other products I have used, or know about, since being diagnosed.  I am not endorsing any particular suppliers, medications, supplements etc; I’ve just mentioned those I have tried or am using.  This isn’t an exhaustive list, there are medicines, therapies and other things I haven’t tried or even know about.

My main advice is:

  • Talk to your MS nurse about treatments/medicines
  • Be wary of information about MS on the Internet on random sites, as there is a lot of rubbish out there (excluding this site, of course!).  Stick to reliable sources of information like the MS Society, Berkshire MS Therapy Centre (BMSTC or your local equivalent) and MS Trust sites.
  • Surf the Internet before you make any purchases to find the best deal.
  • “Manage your condition, don’t let it manage you”  - Annette, MS Specialist Nurse

Finally, in updating this to version 2,  I can't stress how important it is to be proactive.  Don't wait until you have a slip/fall to ask for them grab rails,  or until your legs fail before you apply for a Blue Badge.  

I appreciate this may be a bit daunting/scary to those recently diagnosed.  But, I also know folk diagnosed for years who didn’t know some of the info I have gathered over the years so thought it would be helpful to share .

What I do hear often is that it is hard to explain; that some family and/or friends can't see you are ill or fatigued so may doubt how you say you are feeling.  There is a whole lot of denial mixed with psychology mixed with fear in there so seek professional help!   If you have found an effective way to share the message, please consider emailing it to me so I can add details on this site.

And finally, listen to a song written and performed by Andy Lavery - Tripping on Air summarising some of the challenges faced.

Version 2 - January 2023
 
 
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