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Patients Multiple sclerosis

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Posted on

Does anyone suffer from ms as I do? My husband doesn't know what I go through day in and day out 

Beginning of the discussion - 11/12/2018

Understanding MS

• Community manager
Posted on

@Moreland Hello Moreland,

Thank you for posting, I am going to tag some members who may be interested in this topic and can relate to you :)

@Tania080684@hannaheleanorjones@Trayback@Npassey@Carefreeblues@Bailey123@karen1970@Sandy12@Nayy1991@SarsMS@esdoyle@Stannington Jacqui@smegcat@ChristyT@Jomarian@Lmcm84@FredaBurke@Linz1978@jay1508@Jinty44@chickypoo@Helenski@Wallwalker@Scronti@hayles@Michelle47@Winglessbird@Disableddj@Mrsmoon@Kencomax‍ 

Understanding MS


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Yip know the feeling, 8 had to give up work earlier this year, and if my husband comes home from work and I have not managed to do house work, he is like what have u been doing all day, have u just been sitting on ur ass doinug nothing when I am done doing nothing. Or if I say am tired he will say u don’t know what tired is try working all day, wish I could work 😢😢😢

Understanding MS


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I am extremely lucky, since my diagnosis in 2005 ny partner has done so much for me and  bends over backwards to do what he can for me. Sounds like your husband needs to read up on how MS affects us day to day xx

Understanding MS

• Community manager
Posted on

@Moreland @Linz1978 Hello,

You both may find the article that we recently published very useful, you can access it by clicking on the following link: "How to Explain your Chronic Condition to a Loved One".

Understanding MS


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Hi, like most people with M.S. I can totally relate. This illness is invisible to non sufferers. I am a single mum and my eldest son is very supportive and I am so lucky, but friends and relatives don't always understand. When pain and fatigue take over there is nothing you can do. You just have to go with the flow. I found it very difficult to accept this but when I did my mind settled. Of course I exercise when I Can but now I go with what my body dictates. Our body cells fight each moment to allow us movement and our organs to function. No wonder we are tired. This is not our fault just like any illness we have to fight and try to make people understand. Keep smiling my friend. Big hugs. Agnes

Understanding MS


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@Moreland @Linz1978 @agnespaddy Sometimes I feel like my family members don't understand either, it is made much harder when it is "invisible". It may be invisible but it feels very, very present in my life.

Understanding MS


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I know exactly what you mean. Although other people don't see it is very present in our lives. I hope you are good today. Keep smiling my friend. Big hugs.

Understanding MS


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Good advisor

Hi everyone.  I have probably had MS since 1978, again "probably", this was Relapsing Remitting until 2013.  Although the Neurologist I saw about 2 1/2 years ago adamantly stated my MS was NOT "progressive", both my MS Nurse (I've had since 2014) and myself certainly believe my MS became "Secondary" in 2013 - especially as I have had no "symptom free" days since this time (except for 4 consecutive "symptom free" days, a few years ago, following a session of Acupuncture and Reiki which was like a flipping "miracle")!  My symptoms include double vision, spasticity, "hot flushes" interspersed with "arctic chills", fatigue, pain, poor co-ordination/dexterity (drop anything, anytime - certainly many times every day), walking into "doors, furniture etc/stumbling, staggering, limping, decreased sensation in my hands, feet, upper/lower limbs and of course numerous cognitive issues i.e. poor memory (especially short-term), forever "misplacing" almost anything, extremely slow, especially verbal, information processing and making decisions takes "forever"!  Having said all that, I know I am 1 of the "lucky ones" - am still relatively independent, can still drive my automatic car etc it's just I can never predict what and how much I an do any day/night.  EVERYTHING I do, including eating, dressing, performing personal hygiene etc takes, at least 5x or longer to complete, compared to before 2013.  Again, fortunately, any of my above limitations may last as little as 10-20 minutes (but can re-manifest 10, 20, 30x in any 24 hr period) or can conversely remain problematic for days/weeks/months.  Living with MS is different for us all but constantly trying to remain positive (never always achievable with MS mood swings!), trying to identify which prescription medications and any holistic/ complementary therapies that may improve quality of life, physically/intellectually +/or spiritually etc. is always worth trying.  Although I am sooooooo historically "hit and miss" re: in accessing/contributing Carenity, due to far too chronically low energy levels, want everyone to know that I do strive, nevertheless, to always be available to "talk/try to help" anyone "here" who may need to "talk/share/ask questions"...……...before I retired in 2011, I was a Qualified Nurse and Health & Social Care FE Lecturer/Assessor and Internal Verifier. x

Understanding MS


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@Yank34 It is hard not working anymore, I find :(

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