For the past few days my arms have been so weak, I have not been able to feed myself. Aaaarrgh!!! So frustrating. I swear this monster is just eating my body one bite at a time. I know most of you know what I mean when I say I am so very, very tired. Just bone tired. Too tired to get out of bed. I feel lost. Don’t you wonder where did your life go? Everything has gone to heck, I now have to wear Depends, at age 57! At least I can laugh at that one. I have to admit I get suicidal pretty often. I see a therapist, she is a gem. And I could never do that, it is the most selfish thing there is. But the thought of this for the rest of my life just getting worse every week, it drives me crazy. I like to be in control. Anyway, I love all of you, my family. Kelly xx
Can’t feed myself : For the past few days... - My MSAA Community
Can’t feed myself
Oh Kelly! Sending Hugs and Prayers and hoping your MS Team can offer you some help.
🤗🤗🤗🙏🏻🙏🏻🙏🏻🙏🏻 hugs and prayers
Stay strong Kelly. I’m thinking and praying for you Kelly🙏🏽
Oh I have to let you know you are NOT ALONE the past year I say three weeks have been terrible. My legs have been weak mostly at night.one night from my thighs down they were all tingling, it’s s. been a bit better. I have a 5lb. Hand weight my right arm has more strength my left arm is so much worse I cheat and I hold the weight with two hands. What I am trying to say I understand some of what you are going through. I hope you get your Strength back in your arms. Good luck to you.
Kelly, I am so sorry you are feeling so miserable. Please talk to your doctor about all of these things. And, keep seeing your therapist! I can relate to much of what you said. I have my food cut up for me or I would have a much more difficult time as well. Sometimes, all we can do is laugh. It's that or cry...or both! I think MS does teach us we can't be in control of a lot of things. Maybe that's why some of us become a little obsessive compulsive about the things we can control! I hope between your doctor and therapist they are able to get you on a care plan that you can be comfortable with. Best wishes to you, Kelly. I agree, just in the short time I've been involved with this group, they sure seem to be pretty special. It's nice to have folks who can sympathize with the many different faces of our life with MS. ❤️🌻💐♥️
Kelly, I'm sorry your feeling so badly. We all understand how you feel. When I'm eating my right hand gives up on me and I can't grip my silverwear. It's odd feeling. You have life! Don't allow this monster to define you. I had a really bad day on last Friday. Crying fits, my head was not right. My best option was to stay in bed. "Those" thoughts went thru my head. For me it only happens when I have that type of day. It it went longer, that's when it's time to call for help! Even one day of it, make that call. YOU ARE LOVED!! does your doctor know what your going thru? I would blow his phone up until he helps you. ( just a figure of speech! Have to be careful these days). Stay in touch here! Let us know how you are. Even if you need to write all day. We're here for you!!!
Kelly, I’m so, so sorry for your situation. I watched my Dad deteriorate as his MS progressed and it was so hard. Now, I too have been diagnosed with the disease (along with metastatic breast cancer). At first, all I keep thinking was which chronic illness will take my life? Now I get up in the morning and tell myself that one day, more than likely, one of these diseases will take my life, but that day is NOT today so go out and enjoy every minute of it!! Of course I have days where telling myself this doesn’t seem to help, but then I tell myself that I have every right to feel the way I do, be sad and get on with it! I wish the best for you and as others have said, we are here for you!!
Amore55 Kelly, I wish my words could heal you. You have got to the point a lot of us on here are dreading. I just pray your faith can uphold you. Please don’t quit, you are a fighter. Sending you hope, love, faith, and almighty big hugs, blessings Jimeka 🌈 🙏 🤗 💐
Kelly, sending you hugs, and smiles. 🐻🐨🐼🐸Praying that you will find the right doctor that can find the right med that will halt your progression.
You can do this! Talk with your doctor and anyone else who will listen. We are always here and we understand.
Kelly - I am so sorry you are doing so badly. Please talk to Julia, your neuro. Tell her you need help. You should be getting an aid to help you while Mark is at work. You should also be able to get one to help with the cooking and cleaning. You need help! When do you see her again? Are you able to get into her this week?
We all love you Kelly and are sending prayers your way. I know you are no longer active in the church, but please ask for a blessing. I really think it would help and if nothing else it wouldn't hurt.
Love ya!
Jacqui
Oh I'm so sorry Kelly ur having a crap time of it 🙄🙄🙄🙄. U need to speak to ur docs and team about ur problems u shouldn't have to just put up with it hun xxxxxx
MS sucks it takes so much from all of us. Just know that you are not in this alone, this is a great place to vent. I always look at this way. This is the hand God dealt me so I will play it the best way I can. God bless you and hugs.
I'm sorry you are not doing well Amore55 Call your doctors to tell them what is going on so they can help you. Gentle hugs my friend.
Jessie
I wish I could be helpful by being there, but I will pray all the harder for God’s strength and comfort. We all love you and your sweet spirit.
With prayer and blessing I hope you get feeling better soon 👍🙏🐾😉 Ken
Hi Kelly - I am not as far along as you, but I do know the fear and grief invoked by new symptoms. I am now secondary progressive which has mostly affected my walking but we never know where this is taking us. I haven't taken any of the DMTs because of other health issues and the many potential side effects so I've gone my own way so to speak - diet, supplements, detox, whatever I can muster that makes me feel like maybe I can do something to keep the wolf away from the door a little longer. Is it working? I may never know for sure but it at least gives me something I can focus on that I have control over. I haven't given up on other treatments though and was encouraged recently by an article I read that per studies done in the UK and presented here in America, stem cell should be the first line of treatment over DMTs for aggressive MS. If this can become a reality, there may be hope for more of us. Keep hope alive! This disease can separate us from the rest of the world it seems, but here we know we are all in it together. My thoughts and prayers are with you. Hang in there!
multiplesclerosisnewstoday....
Hidden Have you considered Rituxan [off label use for MS] or it's most recent incarnation, Ocrevus? I have a progressive for of MS either SPMS or PPMS. Nothing really worked for me till I went on Rituxan. Just found out that I am now stable for the first time since I was first dx in 2007. I believe it would help. I have no side affects. Thanks for the link. Love your username 
~terry
Can't take it either due to contraindications. I'm taking low dose naltrexone. I don't know if that has helped slow the decline. It helped with some of my symptoms. I'm hoping that stem cell will become a first line treatment and insurance will cover it. Maybe one of these days. Thanks Terry!
I have had a few friends who have spent most of their life on LDN and though maybe traditional DMTs would be better, they seem to be going good. Stem cell treatment would be wonderful, better yest would to have it covered by medicare and insurance. I forgot to mention that Ocrevus [labeled use for MS] is the "newest cousin" of Rituxan [off label use for MS] and I believe you can take LDN with it. ~terry
Amore55 "Don’t you wonder where did your life go?" I think about this often as well. I understand your feelings. I can't say I'm suicidal but I think of it often as well. I know I can't really go through with it. I talk to my brother about it sometimes. I tell people that I am just waiting for death to come to me. I tell you this cause you are not alone and I understand your feelings. I've had really good times in life and situations and circumstances are only temporary. So I hold out and plan to stay around as long as I can. You are doing the right thing by talking about it. I hope to hear from you more.
I too have to wear Depends, but I started at age 55, I wear a mask @ nite [CPAP] and have to use a catheter to pee at least 3-4 times a day. I have to carry pocket catheters when I go out. How much better can life get? [sarcastic] Stay strong! ~terry
Amore55 I am so struck by your post. Know we are all here for you, there are lots of prayers heading your way. Could you be in a relapse? Have you let your team know what is happening? Hand in there, you are loved!
Awe Kelly, I totally understand everything you just went over. God bless you. Sometimes I think for whatever reason I must have done something really wrong in my life to be here right now. I asked my husband he said that. Why me. I'm sending you hugs to this Electronic Connection and I can I wish I were closer. Know that I'm with you in spirit. We have become sisters as we fight this terrible monster we call MS. We have to keep going for those we love and who love us. It's a burden we must share but remember there are many here who love you dearly including myself. Always tell that to yourself on days when your burden becomes too heavy to bear. All my love. Linda💕
Are you doing better..i know these feelings.
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