Double Vision. Headaches. Nausea. It comes and goes. It frustrates. This drug is keeping me down more than up. I wake and I can barely see clearly. I eat and move about. Eventually I start to see. I hate to admit this. I hate to admit how I feel.
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Be positive. Think uplifting thoughts and imagine how this drug is helping you? Right now it’s doing things in my life that are taking rather than giving. I try to share with you the best Karen but it’s all window dressing. I’m spending more time on the couch or in bed than anything else. No sewing. That’s completely out of reach. Reading? I think not. Makes it all worse. My favorite things are gone for the moment.
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Take some Excedrin for the headaches? Okay, that works for a while. Then I’m up and functional enough to do some chores but certainly not quilting. No. That’s out. Cooking a meal? When your all alone you’re thankful for the microwave meals. I tried some soup and that didn’t work. Not a lot is working to tell you the truth.
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I’ll call my medical team today but who knows what they’ll want to do or what they’ll have to say. All the warnings come with this drug are “high freak” so I don’t know how to make sense of it myself.
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I watched Farrah’s Story last night. I didn’t cry. Thought I might. I imagined having strength to get through what we have to get through. A good message that wasn’t lost on me. Yet I’m miserable, uncomfortable and feel ruined before I’ve even had a chance to get going.
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Someone is going to say I’m giving up. Someone is going to tell me negative things about myself, my spirit, my inner strength. Yet do they really know how difficult it is to wake up and not be able to see, to move through the day with a headache not to mention the nausea and frustration. Everyone has their own opinion about what I should do here.
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I’m not giving up, I’m trying to survive. This is the best I have to give. I’m sorry it’s not enough.
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Never give up. It is that wonderful indomitable spirit of yours that will keep you going! hugs hugs and more and more prayers coming your way!
Oh my sweetheart, what you’re giving…what you’re doing…what you’re sharing…it is enough! It is what it is. If there is a *someone* that is going to plant any negativity in your heart or mind…please give me their number. I’ll go all gangsta on ‘em! ‘Ight?!
Prayers and hugs…and punches, if need be.
I’m so sorry – sure puts Jacob’s minor ear infection into perspective.
Poor you – really hoping things improve soon. Are you getting lots of cuddles from your furry friends ? Sending love xx
Sorry to hear you’re not feeling well I hope your body gets used to the medicine soon. Hang in there Karen. I’m sending positive thoughts from across the big pond.
Thinking of you. Praying. Sounds like this is really, really hard.
Karen, your brother loves you very much, and still thinks about you. He cares for you, and hopes that you remember that he does, has, and always will.
Though difficult times come to everyone in drizzles, rains and down-pours, the best one can give as an outsider is compassion, love, charity & understanding.
I love you very much Kare-bear, I hope you know.
Love,
Little Brother Geoff
There are so many wonderful comments above mine and they say it all. I wish I lived close by so I could be there to help you out. I hope there are some someones who do live there who are helping you. And I know you are NO quitter, you are a brave woman who looks life right square in the eyes and continues to fight. If your body is telling you to kick back and rest, use your resting time as pleasantly as the medication’s side effects will allow. Know down deep that your friends, both IRL and cyber, are here and pulling for you with thoughts, prayers, and many cyber hugs being sent. I think you’re a tough cookie, my friend. XOXOXO
I hate that you feel so miserable and don’t worry about saying you don’t feel well. Your blogging friends need to know how you are. We appreciate you and want the best for you so hang in there… And, feel better real soon
Hi Karen…hope each day is better. I am so sorry you have gotten every side effect in the book. Rest and recover…hugs for you. Better days are comin’!!
Thank you for your honesty, hard as it may have been to post the words.
Be gentle with yourself ~ can you journal or is that beyond reach, too? I’m hoping you can write to download this journey . . .
Wish I lived closer so I could come sit with you a while.
After reading your blog today wanted to share a thought I have always loved.
“Sometimes God calms the Storm
Sometimes God lets the Storm rage and quiets the child ” I pray for Gods peace and quiet in you.
Barb
Karen I’m sending lots and lots of good thoughts your way. You take care…hopefully this bump in the road will smooth out really soon.
Keep goin g Karen, and keep using the blog as a place to say how you feel.
Thinking of you and hoping things impprove quickly
Oh – and you ARE the best Karen – anytime – anyplace.
I’m sending big hugs your way Karen hon, I don’t know what else to do, and I’d like to be able to do so much more. I really hope this will pass and you’ll feel some benefits soon.
*big hugs*
Tazzie
Karen, I wish there was something I could do to help. You’re a fighter! I pray things will get better for you. Sending lots of hugs.
I know the feeling – been there (not with MS) done that – and wondered if I would even wake up the next morning and when I did wake up wondered what I would do with a whole day or misery. Little by little it got better but so many days I was ready to throw in the towel – don’t let anyone tell you that you are being negative – go ahead and feel negative – it isn’t going to hurt you – and go ahead and feel angry – sometimes anger is what makes us able to go on – to summon all that strong feeling and then fight back . Ben (he’s four) was here today and asked about Miss KarenDiane – and he drew a happy picture for you – it is purple and green and orange – very “happy”. He seems to sense when you need someone – and he’s a great someone to have around.
And then he pooped in his pants – he was so busy with his activities that he forgot where he was and just had a big accident. He was so worried about it – but we just slung him into the bath tub and cleaned him all up and painted the walls of the bathtub enclosure with bath crayones. I say – when the world gives you poop – make a pretty picture. Hang in there – our thoughts are constantly with you – hoping to help in some little way to smooth your path. If I was closer – I’m in WA – I’d hop right over and bake up a bunch of food for your fridge so you could just microwave as long as you needed too. Love and super hugs.
Karen….can’t even tell you how gruddy I feel for you. Dang it! It just isn’t fair at the moment but I’m sending up prayers that everything will fall into place..a good place soon. You’ll be feeling tip top..I just know it. Hang tough…don’t let this kick your tail! I’m right beside you…you just can’t see me. Call me if you need…you have the number!
Dear Karen’
I’m so sad to hear your doing it tough, if only we could be there for you to care and show you how much we would love to help you get through this tough time..
You are so brave, hang in there with the hope these meds may get you feeling better soon.
Bug hugs Julia
I cannot imagine what you are going through. I hope if you call the doctor they will tell you what can help. I am praying for you You are in my thoughts. Sending good feelings your way.
I’m so sorry to read how difficult the side effects are hitting you. Only you can decide the right thing to do, whether the benefits outweigh the cost. I’m hoping you feel better soon.
Oh Karen, I don’t like hearing this news. I wish I was there to take care of you. As I always do, I’ll keep you in my prayers.
So sorry to hear you are hurting. Side effects can be so hard to deal with. I think you are being very positive all things considered. I’m cheering for you. Just do the best you can. Read a good saying this weekend. “What others think about you is none of your business.” Don’t worry about those who judge you harshly. It is because they are clueless to what your going through. And who cares what clueless people think?
I’ll bet that “someone” wants the very best for you, I just know it. So quiet that voice, and listen for yours. I’ll bet yours wants some love and compassion. Hunker down and just be…
Love you much, and am sending all my best wishes and healing thoughts.
I KNOW you’re doing your best. How could you do anything else? You’re a fighter, or you wouldn’t be taking this drug. Once it settles into your system, I bet things will calm down and you will start feeling better. Some drugs are nasty going in, but after they ‘take’ all is well again. It’s awful when you can’t do what you love every day. I’m sending you positive, healing thoughts and prayers, my friend.
I can’t even begin to imagine what you’re going through. It sounds absolutely dreadful and very draining.
Wish I could do something other than send you cyber hugs.
Call your doctor! He/she will be able to tell you if these symptoms are to be expected. Sometimes the cure is worse than the illness. I have no idea how Tysabri works. Does it regrow myelin? Or does it just stop the destuction of it? Anyway, you are in my thoughts and in my heart. I am sending you positive vibes. And you are enough, Karen! More than enough – in everything you do. No one thinks that you are giving up. Hang in there! And don’t forget to call the doctor!!!!
I know you will get through this low point. Sending you love through cyberspace.
I have no words of wisdom for you. But do know that you are in my thoughts and prayers. I'm wishing that this will quickly pass and you will be back to doing the things you love. Check into audio books for when your eyes are not allowing you to read. — Big Hugs & sloppy kisses from a certain Spotted One
Oh Karen! It’s ok to just let yourself feel crappy and embrace the crappy sometimes.
Love and Prayers your way!! Big time!
I can’t imagine what it is like for you right now… It sounds like Hell… I pray that this drug cycles out… that your body can recover.. and that you can see clearly, think clearly, and be comfortable to be you!!
Big hugs… and lots of love…
You are enough. You have enough.You are doing enough. You are,you have, you do. You are. ((((((((((((KarenDiane)))))))))))))
Now is not the time for decision. It’s the time for toughing it out. Once you get feedback from Mayo, you’ll have more thoughts. If this gets better, good. It it doesn’t or gets worse, the decision may be made for you. It’s rough looking into the unknown when you feel like roadkill, but the way will be shown to you. It will. DD support!
Sorry you are feeling so bad! I hope you have someone that can help you out some.
Karen, They aren’t kidding when they say these drugs are powerful things…no one believes you are giving up…just a bit stressed. Hang in there.
Sio
My prayers are with you. I have enjoyed your blog.
Hey, Darling Girl, I am here to listen to you! You are part of my life!
Big hugs – wish I could put my arms around you – Lurlineā„
Dear Karen,
Please call your doctor’s office, and please know that whatever decision you make is the right one for you. Please take care and know that we are all here for you and that I, as a Tysabri user, am here to talk if you need it.
Sue
Sending you love and prayers, I hear you and I only hope that you can feel and receive the spirit of compassion and understanding on your end. Thanks for letting us know how you’re feeling, you’re at the top of my prayer list, Kiddo!
Karen, I am sending you lots of hugs and hope you will soon feel better, my friend!
LOL! I’m not quite sure how I double posted, but maybe “the powers that be” knew you needed double hugs and prayers.
!!tickle, tickle!!
Karen,
I have no words of wisdom, I have hugs. Hugs, hugs and more hugs.
Try to hang in there. My hugs come with prayers built in, so know I’m thinking and praying for you.
Hugs
Karen,
I have no words of wisdom, I have hugs. Hugs, hugs and more hugs.
Try to hang in there. My hugs come with prayers built in, so know I’m thinking and praying for you.
Hugs