Patients Multiple sclerosis
Topic of the discussion
Posted on 4/24/19 2:21 AM
Ever since I began to experience symptoms of MS and notice my skills and ability to perform my daily activities decline or become increasingly difficult, I have had concerns about the future. Especially once I received the diagnosis, I became even more fearful... now I had a name to put to the symptoms and the Googling began.
I am scare of the limitations that will be on my life, the increasing dependency on others, and the inability to possibly one day to take care of myself. I do not have a spouse nor kids, so I am scared of being alone or end up in a nursing home.
I am trying to do all I can to prolong this and also considering counseling to be able to address my fears.
Does anyone else go through this or am I alone?
Beginning of the discussion - 4/24/19Does MS cause you to fear the future? https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/does-ms-cause-you-to-fear-the-future-914
Posted on 4/24/19 2:50 AM
@lester198 I too have fear and I don't think you will find one of us with MS who do not. I can't tell you to not be fearful because the fear and the worries get the best of me at times, but was has helped me the most is become transparent with my condition and if I am unable to do something I will ask for help and if something becomes difficult, as long as I can do it, I will and I will not be fearful about using certain assistive devices to help me do it.
Posted on 4/24/19 2:58 AM
@broadwaylady Thank you for writing me back. Today has just been rough and the fear I feel like I walk through alone. I wish I had someone to walk by my side...
Posted on 4/24/19 3:04 AM
Fear is inevitable in life, especially when you MS. If I can try and help to calm your fears, I will do all I Can but I recommend to live as much as you can to the extent you can each because the fear will eat us alive.
Do not feel ashamed or the need to hide the disease. Be transaparent as broadwaylady mentioned... Yes we all want to be able to be independent forever, but even people without MS become - to a certain extent and sometimes completely - dependent. With MS, perhaps it happens sooner, but there are many devices that can allow us to be independent to a much extensive extent than in the past. Organize your house and make things easier for you to do daily... I had a friend who did not have MS, but had a limited shoulder and it caused him pain to raise his arm over his head... he had a nice head of hair, but it became to the point where it was just too hard for him and instead of being in pain everyday to do his hair, he got it shaved to a number 2 all around... It made a huge difference in his life... So I guess what I am saying is look at the small things you can change to make your daily activities easier and do not view them as losing your independence, but maintaing your independence.
Posted on 4/25/19 8:45 PM
I too have felt low and anxious about this condition especially since I was admitted to hospital because I could no longer weight bear but with help I can now transfer using a sliding board I will be getting home very soon but there have been a lot of tears along the way but laughter too I am learning to adapt I find it easier to ask for help than I used to I hope my experience will help you I'm always being told not to be so hard on myself so you shouldn't either how you feel is fine take care xx
Posted on 5/16/19 1:56 AM
@sfkettles so glad you are able to transfer now and becoming confident in asking for help. I think that is one of the more difficult things that people may not consider... asking for help is not easy and it takes a while to be comfortable with it and still remain confident in yourself!
Posted on 7/1/19 2:51 AM
@lester198 yes i think we all feel that fear and uncertainty, and i know social support whether from family, friends or a loved one help each deal with it better. are there other people in your life you can lean on? also as someone else mentioned, being transparent about the disease helps, but i know for me it took some time to accept my disease before i was able to be transparent with those around me. you never know though, someone else may also be dealing with ms themselves or with ms of a loved one and can be someone that can be part of that supportive circle.
Posted on 9/25/19 3:36 AM
thanks everyone for all the support - i am still having these fears but as you all mentioned -,,, it does get "easier" with each passing day or maybe i just am becoming acustomed to the changes either way - hangin in there!!
Posted on 9/28/19 11:22 PM
MS amay de ibccurable but it id tratable. It may be ignorance,but I refuse to let this disease just take me like my aunt did. When she was diagnosed they didn't have any treatments. today i'm taking copaxone and it's beengoing on 5 years and i haven't had any eacerbations. ipray that I don't but if i do yjere sare several options I canfollow
Posted on 9/29/19 12:36 AM
I wish to point out that the fears tor the future is a narmal response to being diagnosed with MS. I recomend a book entitled MS and you're feelings published by ihe nationalMS society Basically the book stares that you"re going through a narmal grieving process. this includes feeling of anger and loss I know that you didn't want to hear rhat you're normal but you are.