So true: I know funny stuff helps, but I... - My MSAA Community

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So true

agapepilgrim profile image
11 Replies

I know funny stuff helps, but I am really depressed by all the events of this month. I am so tired of people telling me "don't worry, I am praying, and you will get better soon." Well, my daughter has been praying for help with Crohn's Disease for 23 years, and she is not better, only maintaining and staying out of hospital is her prayer every day, and ours. "You don't look sick; you look great!" I am praying for grace every day; I have totally lost my sense of humor; it was buried with Mandi.

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agapepilgrim profile image
agapepilgrim
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11 Replies
Nenay profile image
Nenay

I look fine everyday also. I hear it everyday! I am sick of hearing it too. If I don't do something, i'm lazy.

I do know I don't have any happy happy to spread. But thought I would let you know I totaly get it.

I hope your day gets better!

Sukie427 profile image
Sukie427

I know exactly what you mean. Not even my family gets it all the time; I am even having trouble typing this and keep having to go back to correct mistakes. I have horrifically awful, pain-filled days as well, and then there are the days that I feel OK but I am far from feeling great. I am in PT for balance issues and while it works to some extent I know that I will never have my old balance back and I know that when we go out to dinner I get stares from people who think that I am drunk. I know they sell shirts that say "I am not drunk, I have MS" but I won't get one because I don't give a rat's butt what people think. I know that this disease is terminal eventually but I plan to die of old age before it can kill me or even get me down too badly. I exercise every day, either in PT, the therapy pool at my local rehab center, and I ride my horse almost every morning. Sometimes I get frustrated and upset that I have this rotten disease, and some days I just feel like giving up totally. But I won't allow myself to give in to that feeling. I have chosen to live despite this disease and that's what I'm doing. When you have these down days, give yourself a swift kick in the butt and tell yourself that you will beat this thing. We call ourselves MS Warriors and do not view ourselves as patients or victims. Unfortunately, it is what it is, and although there is as of yet no cure and yes, we will live with it forever, we can still have quality of life if we make it so. You can do it, agapepilgrim . You really can. And all of us are here to cheer you on! Hope you start feeling better about your situation soon and learn to cope! Best of luck to you. Sukie427

Nom_De_Plume profile image
Nom_De_Plume in reply to Sukie427

Sukie427 and agapepilgrim , etc. ...just chiming in to say I know exactly what you mean too.

greaterexp profile image
greaterexp

agapepilgrim , if it helps at all, know that everyone here understands what you're saying and feeling. Sometimes we just have to feel what we feel. Not only are our symptoms like a roller coaster, but our feelings, too. I do pray for brighter feelings soon.

jimeka profile image
jimeka

agapepilgrim i am with you on this one. It is so hard to suffer yourself but to see a loved one go through so much, so young and suffer for so long, it is soul destroying. You can pray for that person until you are blue in the face but nothing appears to happen, but it's our faith that keeps us going. Never give up on your faith, and I pray that you my friend will be able to muster up that beautiful sense of humour that has shown me to be a light on dark days and has given me the strength to keep plodding on. I am sure that I am not the only person on here that you have helped unknowingly. I pray that you can find a glimmer of hope, and I know the Lords hand is on you and your daughter, hang in there kiddo blessings Jimeka 🦋 🌈 🤗 💐 🍫 🙏

Juleigh21 profile image
Juleigh21

It's so hard when we suffer day in and day out, never knowing what's coming next! But when we watch our child suffer with illnesses it's so much worse! I pray harder for my daughter, who is ill, than I ever do for myself! Hang in there agapepilgrim ! Life is very discouraging at times, sometimes a lot of times😕. Try to give it to God and not dwell on the worries. That's what keeps me sane. We're pulling for you!!

SlmHarris profile image
SlmHarris

I apologize if I was one that responded incorrectly on your post.

I understand your frustration I find my self in familiar feelings.

Something I try to do for myself 1. How long have I felt this way? Is my depression medicine not working? 2. Is this a possible relapse? 3. Is my Dr listening to what I say and are they trying to help?

The main one I found out after 4years of hell, I must not be going to the right Dr. Make sure your Dr specializes in MS.

I hope some of this helps if not all. I know we do not know each other, however we walk the same footsteps.

I do pray for my friends. I do pray for comfort and guidance. One day a cure!

Karen-x profile image
Karen-x

Sweet sweet agapepilgrim I hear what you are saying. At times it feels like we will never climb out of the pit. Remember that fear and hopelessness are from the evil one, the deceiver. His little minions trying to latch one.

There have been so many days you have given me joy and hope, a beacon of Jesus' love. Hang in there. Great agape to you! 😙

Nom_De_Plume profile image
Nom_De_Plume in reply to Karen-x

That's right, Karen-x . Don't despair.

Easier said than done, some days, to be sure.

BigMar7 profile image
BigMar7

Whenever I have a rotten day I tell myself that tomorrow will be better and it usually is. Hang in there!

agapepilgrim profile image
agapepilgrim

I thank all of you. Unfortunately BigMar7 things for me just keep getting worse! You know the old joke: look up, things good be worse, and now they are!! I do thank God I can walk, take care of personal grooming, and most days text legible words with help from autocorrect! 2 more days will show no or less improvement. Whichever, my funding is our and 2 more weeks I'm off any DMT. "This to shall pass away" (if not here,them on the other side)'!

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