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Why I don’t contact them each time….

Does anyone else have the problem that when trying to explain the symptoms they’re having during what they feel is a relapse they just getting bombarded with having to make them fit the seemingly endless boxes .. eg. “how far can you walk unaided ?, how much is it affecting your day to day activities ? etc etc… Your head is in a spin because a) you don’t carry a pedometer permanently attached to you b) you’ve had ms so long that you’ve adapted how you move about to suit and don’t think about it in terms of distance and c) your brain fog and stress over other symptoms is preventing you thinking clearly anyway. You try to relate the other things that are concerning you only to be told “we can’t help, we’re the nurse advice line and we don’t have time to discuss them” You try to insist that they’re all part of current flare but … You therefore ask :Q: “So, who should I contact then ?” Answer :“ …the nurse advice line “ ??? 🙄🤪 Seemingly I have to ring every day and make an appointment to discuss each symptom separately even though they are all part of current flare/relapse and I’m not asking for symptom management just reporting what I feel is a relapse as I was told to. In the past I’ve not reported anything that hasn’t literally stopped me in my tracks but then end up in hindsight discussing them only to sometimes be told by my neuro that they sound like a relapse and that I must ring every time i have such problems so he can see me in clinic to assess at the time …… So this time I tried …. I give up 😔 And so you see Doctor …this is ‘why’ I don’t bother to ring up each time with what I feel are relapses 🙄 Sorry, rant over, I’ll wobble off now because unaccustomedly as it is for me I just feel like hiding in a corner feeling sorry for myself 😔 As a footnote I would say : I know the quantifying questions are important to get a clear picture of ms and to guide how some treatments are working but when these problems are acute they need to not just be dismissed as a statistic that doesn’t quite fit the right box…

Check out @watsoncraig post below “ my friend posted this” is gr8 & copy/paste or make notes it’s a gr8 summary & use this 🖕for anyone of the disbelievers or grief causers even if it’s just in ur head 😉👍💪 Chin up, ass out & keep waddling/propelling sending u much support & take care of urself!!!!!


I left my corner pity party quite quickly, it’s too tiring feeling sorry for yourself…. Chin up, ass out I waddled on… 😊 Thanks @Runningonempty for the encouraging words and support. I can’t find the @watsoncraig post you mean though… my brain still a bit addled 🤪