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Patients Multiple sclerosis

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Member Carenity • Community manager
Posted on

Hello members,

The goal of this discussion is to have members who have had the diagnosis of multiple sclerosis for about 10 or more years to give their best advice and top tips to members who have been recently diagnosed with MS on how to better accept the diagnosis, cope with the condition, and live a fulfilling life.

 

Members who have been diagnosed for roughly 10 or more years, Please join in on this discussion and share your wisdom.

Members who have been recently diagnosedPlease join in on the discussion, ask questions, and feel the support.

Beginning of the discussion - 3/19/19

What are your top tips / advice for newly diagnosed members?
Member Carenity • Community manager
Posted on

Hello members, I hope you do not mind me tagging you, but I hope you take the time to participate in this discussion and share your experience and advice.

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What are your top tips / advice for newly diagnosed members?
1

Member Carenity
Posted on

HELLO FRIENDS, EXCUSE CAPS MY HANDS HURT AND ARE SWOLLEN.

I do want you to know, you can manage your disease be it sle, aka systemic lupus or fibro. Make sure, you see a doctor, eat right and take naps. That is exactly what my life is about now!! Help yourself, you are worth the investment.

Wishing all of you pain-free days!!!

Always \ mickey

What are your top tips / advice for newly diagnosed members?
Member Carenity
Posted on

I have problems with my hands too.  I am left handed,  broke my  left arm 42 years ago and my left wrist 8 years ago.  Now I have tendinitis in my right hand.  I have to wear gloves on both hands for support.  

What are your top tips / advice for newly diagnosed members?
Member Carenity
Posted on

Thank you @Hidden username‍ for the advice and support. I have problems with my hands too. Been getting worse over the years.

I would give the advice to those who are newly diagnosed, to give yourself some time to become to the point where you can accept the diagnosis. If you are anything like me, it will take time and you will go through the stages of grieving: denial, anger, barganing, depression, then finally acceptance. Do not fight the process and do your best to arrive at stage 5 as smoothly as possible because it is really on at the acceptance stage can you once again find enjoyment in life and that is probably the most important advice I can give you.

The others are to try to watch your diet, eat right, and stay mobile as much as possible. Try to stay independent as long as possible as it helps you mentally, not only physically.

What are your top tips / advice for newly diagnosed members?
Member Carenity
Posted on

HELLO,

I JUST CHECKED MY EMAIL!! IT HAS BEEN WEEKS. SO SORRY, IF YOU HAD TO WAIT FOR THIS RESPONSE. I have received over 100 emails and I needed a break.

MY EMAIL ADDRESS: mickeyitaly3@aol.com

The only thing is to rest!!  Most people with (SLE), LUPUS, ARE OVERACHIEVERS AND PERFECTIONIST!!  Yes, I did grieve and have many of the characteristics you have mentioned. I did not have family members in abundance. My son is in the state of Colorado and he is finding himself. I can not take that time away from him. When he is ready, I expect him to come home. The fact remains, I am sick and He knows it. I have to give him enough rope to hang himself. That is an Italian Cultural Rule. Never smother your family members. They have to respond on their own. They will resent the person who puts them on the spot and pushes them to do something they are not ready for. 

I will start to say: What is very important is your support system of the people you Love. My mother passed away and I am having problems. I never realized how much she did for me. I always told her "I love you Ma"!! I do not regret anything because I attempted to be in my Mother's life until she passed away. I placed her in a nursing home and she was originally placed in the part which is a hospital. She had an infection, and they were treating her with antibiotics. Then they transferred her into the nursing home and that was difficult for me. My mother, adjusted better than I did. I firmly feel we are a product of our environment. I am an Italian American and my family values are deep inside and embedded in my being. I attempt to be as well structured as the next person. I do not have much self-discipline as my mother had. I can only tell you-- if your support system is not strong. WORK ON IT!!!!  That is the secret to every aspect of life. It does not mean you have to have a chronic disease like LUPUS!!!

Just remember, you are going to invest as much time as possible to succeed in a family that supports you. Especially when you do not see the support promptly!!  Consider, your time and effort investments, of a lifetime!!  (Having a secure family relationship) It will pay off, just think if they are worth, the time it takes to invest that effort. FORGIVE ME FOR CUTTING THIS OFF RIGHT HERE!!! I am in a Flare-Up Myself and Can not stay online.

Please be sure to see my email address. Many Blessing to You and Everyone That Reads This!!

Michele aka Mickey

mickeyitaly3@aol.com

What are your top tips / advice for newly diagnosed members?
Member Carenity
Posted on

PS: SOMEONE TOLD ME, "GOD HELPS THOSE WHO HELP THEMSELVES"!! This is the best, I can share at this time with all of you who have emailed me. Forgive me, because I have bad days like you do!!!

IN GOD WE TRUST!!!

mickey

What are your top tips / advice for newly diagnosed members?
Member Carenity
Posted on

@Hidden username excellent advice. I am so sorry to hear about the passing of your mother. I hope you are doing OK now.

I agree, if you can have the support system that is strong it will help you deal with anything that may come your way, be it a disease or anything because a support system can help you emotionally and mentally which is the hardest part to be strong in.

I hope you are doing ok @mickey with your flare.