Patients Multiple sclerosis
What is the most difficult or frustrating aspect of your MS in your daily life?
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Adjusting to life after being diagnosed with MS can be very difficult. It requires becoming more aware of the limitations that your body will experience and the lifestyle changes that these changes will force upon you. These adjustments focus around every aspect of life; from basic mobility to how it impacted upon your relationship with friends and families. The nuanced list goes on...but I would like to hear about your personal experiences.
Which aspect of your MS do you find the most difficult? What do you miss the most about your life pre-MS? Please don't hesitate to share your experiences and feelings as this will help other members too
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Not being able to go out when I want to(I need someone to take me) is very frustrating. Sometimes you want tos sometimes you want to go out yourself so that is hard for me
@Susiek Hi susie,
Yes, I imagine that is very difficult...do you ever use a mobility scooter? Has it helped?
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Josephine, Community Manager
I have a motorised wheelchair for in the house but can't use it outside on my own due to visual problems with my ms
My fatigue is quite bad so i have a small window in the morning when i feel okay and tend to do things then even after a nap in the afternoon i can't do much later on this is really frustrating
@Susiek Yes, the fatigue is terrible. And the loss of independence is hard as well. Like you said, through the years I've had to slowly relinquish control of certain aspects of my life (driving, namely) and it's been a difficult adjustment. I don't want to feel like I need to be "taken care of" and I just have to accept that now I suppose.
Yes i agree driving was a big thing for me too as was having to stop working i have carers now as i need the help to shower and get dressed and get my meals take care 🌈
@Susiek @ladymary Hello Susiek and ladymary, thank you both for participating in this discussion! Let me tag some other members who may not have seen this yet!
Hello all, have you seen this discussion yet? What is the most difficult frustrating aspect of your MS? Is the pain, the fatigue, the spasticity or the mobility issues? Is it something else? How do you cope with it?
@MSMaven @Miss.MS @Rolley5 @VickiD @Emma123 @Emma1024 @shunt999 @madsheep71 @Zombieapplebaby @Tilly68 @Bern50 @Meggie333 @Hezza21 @DavidMacRae @182614 @Diva360
Feel free to share your thoughts and experiences here!
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Courtney_J, Community Manager, Carenity UK
@Courtney_J I completely agree, for me the loss of mobility is devastating, because at least for me it therefore means loss of independence. I was such an active and independent person before, so it's hard for me to accept help and to not be able to do things how and when I want.
Having ms was no big deal I thought. Until you slowly loose your independence. That's so difficult to deal with. When before you never really give it a second thought. Take care x
The loss of mobility and independence was hard to swallow. Before the ms I was very active I was a personal trainer. Still practise what I preach. Exercise in moderation when your not too tired. Slows down ms symptoms. I've had ms forty yrs now. Still upsets me at times. When I cant always do what I need to be done. I except defeat sometimes for a nap. Take care
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