Patients Multiple sclerosis
Topic of the discussion
Posted on 25/06/2018 14:26
Chronic conditions and their impact on a person's everyday life are often misunderstood or insufficiently understood, which leads to isolation and loneliness.
Was it similar in your case? Or did you get enough support from your family and friends or from patient support groups and your care team?
What or who helps you feel less alone and better understood? What do you think can be improved in the way chronic conditions, and Multiple sclerosis in particular, are perceived in today's society?
Your thoughts and experiences on the subject are very welcome.
Beginning of the discussion - 02/07/2018Do you ever feel lonely with your MS? https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/do-you-feel-lonely-because-of-your-ms-2423
Posted on 02/07/2018 13:10
Im sitting in the frontroom while my family are of doing there thing. I feel like all I do now is watch TV. O used to be so energetic and massively disliked being stuck in doors. Now thats mostly all I do 😭 I only go out for a bit of food shopping or maybe to the Dr's on my scooter. I miss the old me 😫
Posted on 20/08/2018 18:38
I quite agree as I feel the same, I had 4 of a family and worked and was always on the go. I was diagnosed with MS about 22 year ago, but it didn’t affect me until 2013. It changed my life completely, as everything I had been used to doing, I now struggled with, pure frustration. I now sit at home whilst veryone is doing things, I look forward to my outing shopping on my scooter, with my husband, who is my rock, I don’t know what I’d do without him. I miss the old me 😩 it’s true about the saying, you don’t miss what you’ve got till it’s gone 😕😕
Posted on 22/08/2018 11:40
It can be really hard to adjust to a life less mobile than before but it is always a great idea to stimulate your brain even if you can't move around like you used to.
Some activities that could help you feel less lethargic with restricted mobility could be:
Puzzles such as sudoku and crosswords. Have you ever tried cryptic crosswords? They are much harder but also much more rewarding. Reading is also a great way to spike your imagination...if you need any page-turning reccomendations, I am an avid reader and would happily recommend some :)
I met one lady with MS who told me that getting a kitten really helped her to beat the daily melancholy. Cats can take care of themselves more than dogs so it is less of a commitment but still a little fluff ball to love.
Posted on 22/09/2021 15:29
How are you today? Have you seen this older discussion?
Living with a chronic illness like MS can be isolating...
Have you ever felt alone with MS? Who do you turn to for support? Are your loved ones understanding of what you're going through?
@James-S @Debswallace @ahmedi @Gazza65 @karen5 @elmcroft25 @Theawr @rubyrose69 @Bryan123 @MrsBBumble @02920.teri @Nealson @KarenTravers @Rose1962 @Lee411 @lucy2000t2000 @Drclayyon @Jackline
Feel free to share with us here, we're all here to support one another!
Posted on 23/09/2021 12:58
I've had it for so long now that I'm used to it. As far as loneliness goes I wouldn't mind a cuddle every now and then.
Posted on 25/10/2021 14:05
It was nice to read other peoples views on loneliness I too get so frustrated with my ms but i will attempt to do things as before It's then that frustration kicks in if it doesn't go well I'm not lonely as i have family and friends but it's when you are on your own that you feel it