How are you feeling this week?
How are your mind and body feeling this week?
What symptoms seem to be bothering you the most lately? Do any symptoms seem to have subsided this week?
Emotionally, where are you this week?
Have you had any specific ups or downs with the week?
Let us know how you're feeling.
I am new to this website. I don't normally talk about it my MS on line. Other then to a private journal. Talking about my symptoms can be very long winded and complicated for me. Because there are so many of them and they've been going on for years and years.
Every single day I have to deal with exhaustion. Every single day I have to deal with dizziness. Every single day I have to deal with pain and spasm. Every single day I have to deal with cognitive issues. Every single day I have to deal with verbal and speaking issues. I live with fatigue and I live with weakness weakness at levels. I can't even explain 2 other people. And moving and walking has just become a whole new art form for me. I really have to say in the way of symptoms I never have an easy day. And I actually am pretty well adjusted to it. It just is what it is and I know. I have to live with it so i've learned how to live with it.
When it comes to my emotions. When it comes to my frame of mind. When it comes to my anxieties or my fears. Those things change like by the minute. Some days they're great big ugly crazy things. And some days they just quietly sit in the background and don't really require too much attention.
I am a recluse. I never leave my house. I have no family anywhere near me, That I can reach out to. So for me emotionally. My biggest challenge is the fact that i'm so alone and so lonely and so isolated. I totally feel the effects of these things and I try to cope with them as best I can, along with everything else.
So I am kind of glad that I found a place that I can come and I can express myself. And talk about things and respond to things. At least my brain is telling me that for the time being, that it's okay to talk.I find cooling my neck, arms, and back while drinking my coffee every morning very tolerable. I hear you. I finally after also carrying spare undies wipes etc, find some sleek panties or small light cycle pads...noone likes to talk these things but yet...life. id make sure also to check with doc on UTI...best wishesjj
Sammi, your story is the same as mine. But I do have family that I asked them when their lease was up if they would move back home. On the whole I'm glad they are here. I always LOVED living alone. But I now know it just was not in the cards any longer. I miss my independence. Along with my ability to walk, multi task..... well pretty much so much as you said. We will just keep on trudging along! Have a blessed day!
I have to admit when I look at my situation. And I look back at the pattern of events that led me to be where I'm at now. I used to manage a department and I had a lot of responsibility and I was very good at my job. But I do believe that the biggest most devastating change for me was losing that part of my life. I actually find myself feeling like I don't have any worth because I really don't do anything but sit in my room and stare at the walls. I am not a social person I rarely interact with other people. But I do sit here daily and think about what I've lost and how much I miss all of that. But thank you so very much for your response. And you're right we do just have to keep trudging along that's pretty much all we have now. And I hope you also find some very uplifting moments in your day today.
Sammi, it's okay to be longwinded, I'm pretty longwinded myself. Talking about something to somebody who goes through the same crap sometimes can help you to feel a little better, more understood. I've had MS for 42 years. Some days I feel somewhat okay, other days I'm so tired and dragged out, I feel like I've been trampled by a herd of buffalo. I've got no one to help me so no matter how bad I feel I push myself to get up and do what I have to do. Nearly 40 years ago my wonderful, kind and compassionate neurologist told me, "Keep doing what you're doing, keep moving, or you won't be able to." I have followed his advice. When he said that, he knew that I was/am somebody who did a lot of physical exercise and at my age now, I realize how important physical exercise is and how it DOES help us to stay on our feet and help us to get through each day. Sometimes exercise is tough on a day when there's a lot of pain and many days, exercise is boring but, IT'S IMPORTANT. There are a great many people who have MS, we all have our individual problems but we all know, or should know, what others with this disease go through and we do understand.
I have personally had MS for 30 years. I am well in the secondary Progressive have been for probably 4 years now. Definitely a big difference between the recurring relapses remissions. To this constant continuous affect all day everyday. My doctor actually ordered me a wheelchair a year ago because I have so much difficulty walking. And I do have a walker and I do have a couple canes. But as much difficulty as I have walking and this is just a stubborn thing on my part. I actually absolutely refuse to get in that wheelchair. I will crawl somewhere before I will sit in that chair. Only because I kind of feel down to the bone that the moment I sit down in that chair and I get comfortable in that chair I will never get out of that chair. And for me right now being able to continue walking however drunken looking it is. Or how often I come very close to Falling or have fallen. I am just determined to keep moving as long as I possibly can. And I do attempt to exercise every day because I do clearly understand how important keeping my body moving is. I drunk walk from the front of my studio to the back of my studio and I try to do that at least 3 days a week and sometimes I can accomplish a half a mile. Which to a lot of people probably doesn't seem like much. But to me it seems like everything. And you're right we all have very different problems and issues and challenges. But it does help so much knowing there are other people that understand what your issues are and understand why they're happening and accept them for what they are with no judgment. So thank you so very much for your input and for responding and including me in this conversation. I hope you have a awesome day with lots of uplifting moments. what great advice from your neurologist. I am 42, have had symptoms since I was 30, but wasn't officially diagnosed until 7.5 yrs ago. I have the utmost admiration and respect for you living with MS for 42 years. I honestly cannot imagine fighting this fight for that long. I still work FT, run a household, two dogs, two kids..one with special needs, and I am beyond exhausted with no relief in site. But like your Neuro said, I have to keep doing what I am doing, keep moving..while I can. Thank you for being an MS warrior!
The temperature in Florida is so oppressive. Even with my cooling vest, fans, air conditioning etc., I am so fatigued. The stress of trying to schedule my day in order to sit, cool off and rest, after 15-20 minutes of housework, makes me almost feel like not even trying.
I often grieve the loss of the old me that kept a meticulous home.
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Thank you for sharing your experience and kind words of encouragement.
How are things going today? ~Doreen (Team Member)Thank you for asking. I am actually having a difficult day. Because I fell day before yesterday pulled a muscle in my back. And I normally have a lot of issues with my back because of MS. So this is just kind of made it a little more difficult for me. And I'm sure with time I'll be fine. But for now it's a little bit of a distraction. I just really have to sit quietly and try not to move around too much and give it an opportunity to heal. But thank you again for asking.
