I don’t want to go here
This morning I went into town, birthday shopping for the Flower Child. And my legs “cut out” on me. That hasn’t happened in years. I sat down for a coffee and when I stood up again, I was too weak to move my legs. They felt hollow and a bit painful. A feeling I am well familiar with from old relapses, but things are different now. It used to come and go, everything used to go away. The legs snapped back into place today. But other things don’t. And I’m starting to face up to the fact that this may be downhill from here. I got incredibly lucky there for awhile, and it made me complacent.
I walked passed the mobility shop, gazed at the scooters sitting outside and my heart shuddered. I had a simple task to complete this afternoon, and I just couldn’t do it. The eyes, the dizziness the weakness; I just couldn’t do it. I feel heavy with the realisation that “this is real. this was always going to happen. I just hadn’t admitted it to myself.”
Has it finally happened? Have I turned Secondary Progressive? This Armageddon moment that I’ve been convincing myself for 14 years that I could keep from happening? And I did keep it from happening for awhile. My doctors all raved about how well I was doing. But the relapses don’t really happen anymore, not quite like they did. I just don’t function in general. And I barely notice it getting worse until I think about things I did last year or even six months ago, and realise that it’s not just a case of just trying harder anymore. I really can’t do them now.
I can see everything and nothing. I don’t even know my friends when they’re standing a nose away from me anymore. The vertigo and dizziness are so bad. I can’t read anymore. I can’t walk a few hundred meters without making myself ill. I can’t describe it. And it feels unfair that I begin to emerge from my depression and trauma from recent years, only to reap the effects in my body so severely. I just want to enjoy my life for once. I’m tired of things being so hard. I’m tired of it. I’m tired of not being happy or even just functional. Life has Things in it. I want those Things. I’m tired of sitting on my ass just because I can’t do anything else. I’m tired of only going to “safe” places that I know well and that aren’t new. I want something new, but new isn’t safe. If I don’t know the escape routes (public toilets, cafes, bus routes, benches, air conditioned shops. . . where my friends are. . . ) then I just can’t go there. Going into the playground with the Flower Child suddenly becomes threatening and dangerous because I can’t see the faces of the parents around me. I don’t know if I know them, I don’t know their expression and can’t judge what to do because of their mannerisms. I can’t read people anymore. It’s a lost sense to me to not be able to read people, to not be able to read their faces.
I can’t read books anymore. I try, and I fail. I want to. I want to read. I miss reading. The combination of eyes, cognitive issues and fatigue closes that door. I want to read.
And cognitively I can’t remember anything, even seconds after the prompt. I think I was doing something yesterday that I managed in the end, but it took me so long to do it, but I can’t even remember now what it was. I remember thinking at the time that it was taking me a long time.
Yes this is a whinge!! What have I been playing at for 14 years?! Did I really think this wouldn’t happen to me? No. . .
I just wasn’t ready yet. Things are different now. Somewhere, I know that. I don’t want to do this. I don’t want this. I want to enjoy my life and if I can’t enjoy it, I just want to live it. I don’t want this. I don’t want to go here.
Tags: anger, body, changes, grief, loss, MS, rant, SPMS, symptoms, the Flower Child
June 29th, 2010 at 4:16 pm
A moving and heartbreaking post. It’s an honour to know you. Much love. R
June 29th, 2010 at 5:04 pm
Words fail; thinking of you …
June 29th, 2010 at 6:44 pm
I don’t know what to say. WWE is right, this is heartbreaking. But I wanted to comment so you can know your voice is still heard. x
June 29th, 2010 at 9:14 pm
it was good to hear your voice today. No wonder you were sounding so drained and weary. My dear, beautiful friend, I send you many many hugs. And to reiterate my earlier response: “Oh crap!” Love you, hun.
June 29th, 2010 at 9:36 pm
Shedding a tear for you here, not that that helps practically, but this unknown face is with you.
June 29th, 2010 at 9:48 pm
I’m so sorry I can’t help you in any way other than to pray for you.
June 29th, 2010 at 11:50 pm
I hear you, I can’t pretent to understand but whatever the road ahead looks like, we’re walking it alongside you. xx
June 30th, 2010 at 2:06 am
No matter what…there is always hope. Cling to that…even in the dark. I know the dark…in different ways than you, but it’s still been dark. But for all the dark, there is always hope.
Your friends loving you from afar and cheering for you above the rest of the crowd…that’s HOPE!
xoxoxo
June 30th, 2010 at 2:53 am
Sending hugs, good thoughts, and moutains of understanding. Take it easy on yourself – breathe deep and just live each day.
June 30th, 2010 at 8:56 am
Hugs xx
June 30th, 2010 at 1:02 pm
Love, prayers and hugs from Sydney. And thank you for keeping your voice proclaiming loud and clear.
June 30th, 2010 at 2:15 pm
you are in my thoughts, dear soul. constantly changing & shifting toward a new normal. for all the changes and differences now… you’re still you. (((((burntsienna)))))
love, me.
June 30th, 2010 at 11:09 pm
Sienna – I hear your voice and can do little but pray. But I’ll pray.
July 1st, 2010 at 5:49 pm
Sienna, wow. Just wow. I’ve gone through some of your posts and your About and learned some more about you, and I’m so impressed with the beauty and joy and pain that you’ve expressed on this site.
You have a tough road to walk, my friend. But the grace and honesty with which you’re walking it are inspiring, both to me and to thousands of others. Please know that there are people out there who see your struggles and will love you through it.
I am one of them.
Thank you for inspiring me today.
Much love,
Nate
July 1st, 2010 at 7:39 pm
Hey beautiful woman,
I am so sorry for everything you are going through. I will be keeping you in my thoughts and prayers, as well as your family. I wish strength, peace and comfort for all of you, and that you will rest assured in the number of people that care greatly for you! Keep your chin up, lady. Fight for the best. You have the world behind you.
- lauren xoxo
“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”
July 1st, 2010 at 7:49 pm
Hugs from me and prayers too. Letting it out is a good way of being ready to face the new day
July 1st, 2010 at 7:50 pm
Sending hugs to warm you, love to lift you, support to help you and prayers because God loves you! Be strong, stay positive and know that you are never alone =)
July 1st, 2010 at 7:52 pm
My thoughts and prayers are with you. I also have MS & know the fear that comes along with this scary & unpredictable disease. You are helping others by talking about it & spreading awareness. I just did a post the other day called “what we’d want everybody to know about MS”. More people need to know about this disease. Hang in there! You’re not alone!!!
July 1st, 2010 at 7:53 pm
Thinking of you and lifting you up in prayer. This “thing” can hold your body in its grasp, but not your spirit. Don’t let it, ok? Don’t let your spirit go there.
July 1st, 2010 at 7:56 pm
You don’t know me, but I just wanted to send you prayers, and I hope you continue to find the amazing strength you seem to have. With love
July 1st, 2010 at 7:56 pm
As someone else has already said: there is always hope. Stay strong and stay positive, because things could get better again.
Having suffered with Chronic Fatigue Syndrome for nearly 7 years now, I can understand what you’re going through and I know how awful it is. There are no words for how terrible it can feel.
But please know that you will always have people who love you and are prepared to look out for you. From reading your other posts, I can see what an amazing, strong and fantastic woman you are.
I don’t really know what else to say, because I know there’s probably not anything I can say to make things better for you. So, I guess I’d just like you to know that you’re in my thoughts and I really genuinely hope everything gets better for you. I can’t think of anyone who deserves happiness more than yourself.
Take care x
July 1st, 2010 at 7:56 pm
You sound like a beautiful soul, and when you have the courage to talk about what you’re going through, it gives me power and hope to do the same. Thank you.
July 1st, 2010 at 7:57 pm
You are in my thoughts and prayers.
July 1st, 2010 at 7:58 pm
sending lots of love and prayers your way sienna.
July 1st, 2010 at 7:58 pm
Well you are in pain, but is there a purpose… a plan behind all this?, there should be…. can you think of anyway you can positively influence other peoples lives…. if you can …. you will no more feel bad about your situation anymore. I would think that you are the best candidate to make others with lesser problems realize the worth of living their lives beautifully while they still can. All the best.
PS: I come here through the ‘love bomb’ initiative
July 1st, 2010 at 7:59 pm
I’m 16 and my friend’s mum also has MS, although she seems healthy most of the time right now I think she too finds it hard to face the idea that her condition will get worse. I wish there was some way I could help you but I’m sure that you will have people around you who care supporting you all the time. I cannot imagine what you are going through and have admiration for you in starting to be able to face it – remember to stay strong.
sending out love and hugs to you
Rach xxx
July 1st, 2010 at 7:59 pm
I have tears in my eyes for you.
I too am an avid reader, and cannot imagine not being able to read. Although not the same, have you considered books on tape, or MP3 downloads of books.
I am so sorry you are having such a hard time right now. A friend on my Mom’s has MS too. For the time being she has not lost much function, but my Mom has told me that she can see changes in her.
Stay strong hun, many people care for you and love you.
I will pray for you.
July 1st, 2010 at 8:02 pm
My heart goes out to you. I can tell from this post that you are the sort of person who is courageous and does not let herself be stopped so easily. No matter what your life brings, I think you can handle it. The rest of us are cheering for you on the sidelines of life.
July 1st, 2010 at 8:03 pm
you’re in my prayers. i can’t begin to imagine what you’re struggling with, but continue to have the courage that you’ve had over the years. my best friend’s mother has very similar trials, so i can somewhat see what you go through. as long as you’re doing the best that you can, you’re doing fine. and remember that there is opposition in all things, so when you do experience good days, they will seem especially sweet to you.
July 1st, 2010 at 8:03 pm
This is heartbreaking. I’ve seen first hand the effects of MS and I can only wish for you sunshine on your cloudiest days, and smiles on your teariest ones.
Viva STRONG!
July 1st, 2010 at 8:07 pm
I can’t imagine what it’s like to live in a vessel (body) that doesn’t cooperate the way it once did. I give you credit for writing and sharing your experiences, and for facing them, despite not liking the outlook. You are loved beyond measure, and the power of love can heal ANYTHING. Miracles come from love, and I think you may benefit from banking on a miracle. In the meantime, I’m sending loads of light, positive uplifting energy and good thoughts your way. May your days be easy, and your nights restful… May you feel joy in your mind, body & heart.
My best to you,
Megan
July 1st, 2010 at 8:15 pm
Although I do not know you, I have read your post and am thinking about you. I wish that there was a way to lift the burden of MS off of your shoulders, because I would. I will keep you in my thoughts and hope for some positive energy to find you soon.
July 1st, 2010 at 8:16 pm
Hey dear,
I can’t even imagine how hard it must be for you to go through this. I wish you a lot of strength, and please remember – we all are here. We are thinking of you and standing behind you.
Lots of love,
Inge
July 1st, 2010 at 8:24 pm
Sienna~ I just wanted to give you a big *HUG* and to say that lots of prayers are coming your way!
July 1st, 2010 at 8:25 pm
I know it’s tough and I wish no one ever had to go through this type of thing, but think about the things you can do. You can still love others and be loved by others. In the end, that’s what really matters.
Hang in there, you can do it.
July 1st, 2010 at 8:25 pm
it breaks my heart that you have to live with this every day, but I hope you can take joy in the fact that you are alive, you have a voice to raise awareness about life with MS, and there are people out there who love you and care about you.
one day at a time.
With love from Texas
July 1st, 2010 at 8:26 pm
Your post is beautiful and honest and so real. Thank you for sharing your story. So many people fight for their lives with MS and I know from personal experience that it can change your life drastically. Your heart is BIG…your voice perfect and heard. I am praying for your peace and comfort, your health and peace of mind. May you find strength in knowing you are loved. You are never alone…
With love,
Vickie
July 1st, 2010 at 8:27 pm
it may not always seem possible, but you have the strength within you to face anything. let the love of those around you make these times a little easier, and my thoughts are with you that you always find your happiness in spite of the challenges you’ve been presented with. much love!!
July 1st, 2010 at 8:28 pm
Sending lots of love and good thoughts your way.
July 1st, 2010 at 8:30 pm
sending good thoughts your way <3 stay strong, and think positively.
July 1st, 2010 at 8:31 pm
Don’t give up. Good luck, I’m thinking of you. You can handle this, I’m sure of it.
xxxxxxxx
July 1st, 2010 at 8:32 pm
I cannot even imagine what you must be going through. Your blog is a small insight into the difficulties that you and too many others must face on a daily basis, and I hope that everyone who reads it will take some inspiration to be more thankful for what they have. I sincerely hope that your condition will improve, or at least that you will have an easier time of things during these changes.
July 1st, 2010 at 8:33 pm
I’m so sorry, I will keep you in my thoughts and prayers. You are so strong.
July 1st, 2010 at 8:34 pm
Your strength and willingness to keep trying are inspirational. I can only imagine what you are going through just understand that there are people out there who will support you and do what they can to help you. Know that you are strong and can face this thank you for sharing your story, know that I am hoping and thinking about you. Thank you and be strong
July 1st, 2010 at 8:36 pm
I’m praying for you.
July 1st, 2010 at 8:36 pm
Sienna, I feel sorry for you. I can’t imagine what you’re going through…
I really, really wish you’ll find alternative solutions, and somehow will be able to enjoy life. But honestely I know very little about MS, so I don’t know if it’s curable or anything.
Still, don’t give in! Keep hoping.
You’re on my mind and in my prayers.
- Norwegian girl (18)
July 1st, 2010 at 8:39 pm
Sending you love, grace, and hope.
July 1st, 2010 at 8:40 pm
Many prayers and blessings coming your way from New Mexico!
July 1st, 2010 at 8:43 pm
Youwill be in my thoughts and I pray that things get better for you.
July 1st, 2010 at 8:48 pm
I wish you courage and strength to live and enjoy life.
July 1st, 2010 at 8:49 pm
I am so, so sorry. I don’t even know what to say. I’ve seen you mentioned elsewhere via WWE and would love to get to know you more, if only to offer any support that I can give. This post is indeed heartbreaking and though at this stage I can’t understand what you’re going through, I am thinking of you and hoping that if nothing else, just knowing that we’re here to support you will give you the tiniest bit of strength.
xxx
July 1st, 2010 at 8:51 pm
Sienna:
I can’t say I know exactly what you are going through because we do not have the same condition, but I do know something about what you are experiencing. I know what it is like to be afraid to do new things on your own because you are afraid you’ll get trapped and not be able to make it to safety. I commend you for having the strength and courage to share your experience with others–I often struggle to find my voice because I SO don’t want to go there. I don’t want to talk about it, and it just makes the isolation and loneliness worse.
Nothing can fix the MS, but there are people who will understand and walk with you on your journey. Thank you for sharing your story.
May you have infinite love and its causes.
May you be free from suffering and its causes.
May you never be separated from sorrowless bliss.
May you abide in equanimity, free from bias, attachment, and anger.
Sending you love and healing thoughts.
July 1st, 2010 at 8:51 pm
I am so sorry to hear about your pain–I wish that there were something that I could do, but I know that the immense physical struggle you’re enduring cannot be alleviated with words alone.
Please just know that a lot of people love you-you may not be able to remember much, but remember that. Your family, your friends, a bunch of people you don’t know–we’re all behind you supporting you, cheering you on, holding you up when you can’t hold yourself up, every step of the way. Keep letting people in, letting them help you.
One of the most important things people need in life is purpose. Maybe as you allow people to help you through this tough time, you will be giving them a little more purpose, a little bit more of a reason for living–and, coming from someone who’s been suicidal for a large majority of her life, that’s a really huge deal.
Wishing you joy and strength.
With love,
Michelle
July 1st, 2010 at 8:52 pm
wow this is really intense! what comes to me though is that when life is darkest, love shines brightest. i honestly believe that God will bring people and things into your life to comfort where there is pain, to be able where you are unable, and to love where there is anger and hatred building up. my thoughts and prayers are with you forrr suurreee!!
July 1st, 2010 at 8:54 pm
I have no idea what to say, except that you’re in my thoughts, and I’ll be praying for you. Much love.
July 1st, 2010 at 8:56 pm
I’m sorry. You could listen to an audiobook, perhaps, instead of reading? I know it’s not the same.
Even in the darkness, every color can be found. Just keep on keeping on, and try to be as positive as possible… you can still accomplish great things.
July 1st, 2010 at 8:57 pm
Dear Sienna,
Being a mom is such a challenge! I can’t even begin to comprehend what you’re going through, I know, but I, too, have prayed for you. I know how hard it is to love your kid(s) with all your heart and not be able to do what you want to do for or with them. I admire you because you’re not giving up. Please know that across the miles and bytes and whatever else separates us that you are cared about and the battle is worth fighting.
Kitty
July 1st, 2010 at 9:05 pm
There isn’t much that I can say but on some level I understand the pain you are going through but not on a level where I can truly understand how hard it must be to be moving into an even harder arena. Just know that, even though I don’t know you, you are in my thoughts and prayers. (((HUGS)))
July 1st, 2010 at 9:06 pm
I cannot imagine your pain, but know that there are many people surrounding you with love and support and energy. Your body may be failing, but you are still you. Draw strength from your little one…children’s joy and exploration of the world makes even the dullest of days brilliant. But remember, you are not alone. People are listening, and your voice is being heard. Focus on the sunshine amidst the clouds.
July 1st, 2010 at 9:20 pm
I know audiobooks and podcasts aren’t the same as reading but you may get some of the same enjoyment out of them as you did with books.
*hugs* I think you’re an emotionally strong person and I admire you.
July 1st, 2010 at 9:21 pm
All I can say is that we live each day for what it is worth. It’s hard enough just being a human being – people depending on you, relationships revolving around you – without the added stress of physical and emotional ailments. It isn’t fair. But we take whatever we’re given, and with a little hope and sheer will thrown in, we leave the world a little better than we found it. You will be in my prayers. Even though I’m a stranger, I love you for continuing your journey.
July 1st, 2010 at 9:28 pm
I’m sending you lots of love and hugs. I admire your courageousness for blogging about what you are feeling and sharing it. And there are people here listening and sending you their positive thoughts and prayers! If you ever want to borrow an audiobook from me, let me know! I love to read too! ::big hugs::
July 1st, 2010 at 9:33 pm
This really touched me because I’m struggling with chronic stomach problems and have a similar frustration about not being able to go anywhere unless it’s “safe” (aka, finding a bathroom). Obviously, having a bellyache doesn’t compare, but I can (somewhat) relate to that aspect.
I can’t even imagine how difficult things must be, but know that your voice is strong and there are lots of big hearts sending love your way. Even though it’s hard, try to remember and hold on to the good things in your life. You’ll be in my prayers.
xo
July 1st, 2010 at 9:33 pm
Sending hugs
I was ill for a number of weeks a while ago, and I can’t imagine having to deal with something like MS on a long-term basis. But kudos to you for just getting on with life.
P.S. Love the title of your blog! ‘Both Sides Now’ is one of my favourite songs.
July 1st, 2010 at 9:37 pm
Praying for you Sienna! Hugs and love from texas! you rock and know that others are praying for you also!
July 1st, 2010 at 9:39 pm
Wow! I know that feeling of not knowing … I know that devestating feeling of just trying to concentrate on walking properly, concentrating so hard on what someone is saying – trying to remember – forgetting, but struggling to remember. The brain is trying to do what it used to take for granted – what everyone takes for granted -just getting from here to there. You are not alone – thanks for sharing. There is a purpose for all of it – and you may not know what it is now – but look at those who don’t even know you and are touched by you! God Bless You as you go forward in this journey – He will never leave you or foresake you – you are His child. Blessings ….
July 1st, 2010 at 9:46 pm
I’ve had some medical problems in my life, but nothing like this. I can’t imagine what it must be like to go through what you are.
Take it one day at a time and you’ll get through it. I’ll be thinking of and praying for you. It’s gonna be okay, somehow. Maybe a different okay than what you wanted – but okay.
With love,
Patricia <3
July 1st, 2010 at 9:51 pm
reading your story brings a frown to my face….I will pray for your strength pray for you…know that you are not alone…your voice is being heard…you are in our hearts and prayers….
July 1st, 2010 at 9:55 pm
I am thinking of you and your family at this time. I know it must be hard to stay positive in a time like this, but I am convinced that the more positive you stay the better you’ll feel. I’ll be praying for you through your journey!!!
July 1st, 2010 at 9:58 pm
You’re in my prayers. And I wish all the best things for you threw this difficult time. But God does not give us things that he knows we couldnt over come. Stay strong. xoxox.
July 1st, 2010 at 10:00 pm
*pulls into a hug*
I don’t understand everything you’re going through, dear. But I hear you. <3
Even though it may not feel like it, everything is going to be okay. God has a plan. I'm not sure what else to say, dear. I'm thinking of you and I'm praying for you. I felt I should share this song with you.
The song is It's Going to Be Alright by Sara Groves.
http://www.youtube.com/watch?v=E9yNZ17j8Fg
love love love love love! <3 <3 <3 <3 <3
July 1st, 2010 at 10:01 pm
You are going through things I couldn’t dream of withstanding, and you are still here. My heart breaks for you, but you are so strong. You can keep going. Enjoy what you can enjoy, and live as fiercely as you can. I wish I could do more than just send love and hugs, but that’s all I can do. You are an inspiration, and I will be thinking of you and hoping with all my heart that you can continue to be the beautiful, inspiring, and courageous person that you are for ages yet.
hugs and love
xxx
July 1st, 2010 at 10:06 pm
Your thoughts are heard. A little love from one soul to another
July 1st, 2010 at 10:10 pm
I am so sorry for your struggle – I can’t imagine the grief you must feel for all that is lost with MS as well as the fear. My brother in-law was recently diagnosed with MS and so I thank you for the opportunity to hear some of his voice through you…. you are a teacher. I want to send you much love and comfort. Also please know that a rather large distance exists between a “whinge” and needing to express your voice. Thank you and Love -
July 1st, 2010 at 10:14 pm
You are in my thoughts and prayers. I know the road is rough ahead, but what helps me get through the hard time is clinging to the brightness in my life. I pray for the best for you.
July 1st, 2010 at 10:24 pm
You are never alone. All of our thoughts and prayers go out to you.
July 1st, 2010 at 10:33 pm
What an honest and heartbreaking post…I wish there were words that could help. I know you feel pain, but I hope you also feel the love of people who care and wish your pain away. You are in my thoughts and prayers…
July 1st, 2010 at 10:37 pm
Sienna,
I know you don’t know me, but I love you. I love your strength and your courage.
You are a fighter—-please keep fighting.
I will be praying for you every day.
I will pray for you to have more strength than you have now.
I will pray for a miracle for you.
I will pray that you always have HOPE.
Every day try and do something special for yourself.
And every day try and think of as many things as you can to be grateful for.
Every day close your eyes and keep saying to yourself—-” Thank-you for my Healing”
Smile—no matter what. It will make you feel better.
Please know how much you are loved.
Can you feel it???
July 1st, 2010 at 10:41 pm
sharing your voice, my hearing your voice, is living a life. Thanks for sharing. I’m sending love your way. Sharing my love back to you if that helps a little to focus the inner vision. My privilege to know you in this moment. I won’t forget
July 1st, 2010 at 10:49 pm
So sorry you are going through this. Sending positive thoughts and love to you and yours.
July 1st, 2010 at 10:50 pm
I don’t know you, but I know that you are struggling through life in a harder way than most. I hope you know that there is love and support for you everywhere you turn in this world. You are in my prayers.
July 1st, 2010 at 11:03 pm
Sending you love and prayers today and each day. I am inspired by your will and the largeness of which you’ve lived the last 14 years of your life. Keep on keeping on, friend!
July 1st, 2010 at 11:05 pm
Whatever happens, darling, you are not alone.
July 1st, 2010 at 11:12 pm
I have no words for this. I want to help you so badly with everything, but I know that i can’t do anything. and that makes me so angry. I just want to say to you that you need to enjoy every day. I know it sounds very cheesy, but please do. enjoy the good days, enjoy the bad days, enjoy everything. If you do that, life will get better eventually. You’re in my thoughts and prayers.
-Angie
July 1st, 2010 at 11:25 pm
Sienna,
You are in my thoughts and prayers. You are doing the best you can right now.
July 1st, 2010 at 11:43 pm
I have only one thing to say, you will get through this. You are strong and beautiful and have the necessary drive to get through it. All my love and respect for you.
July 1st, 2010 at 11:47 pm
prayers are being sent from me, nancy, in dallas texas… even though your words sound like you are hurting i still can read your strength between the lines.
July 1st, 2010 at 11:51 pm
Dear Sienna,
You are an incredibly strong and brave woman. I can’t imagine going through even a fraction of what you have, and still are. It’s so easy to forget how lucky I am that I can walk to a computer and read your blog post without difficulty. I truly admire your courage, and my heart and thoughts go out to you. Thank you for being an inspiration, and for fulfilling your role as wife and mother to the best of your ability. Please keep your chin up, and remember to smile; a little hope and a smile goes a long way.
All my best wishes,
Michiko xoxoxo
July 2nd, 2010 at 12:11 am
I love you.
July 2nd, 2010 at 12:18 am
Sienna, life is so strange, the challenges are blinding sometimes. I went thru two bouts of lung disease and am now clear, so I’ve had the fear and weakness, but I feel for you! Know that you are loved, honey. You are much more here on this planet than just your body, you are a huge heart and a brave soul. Stay connected to your inner wisdom, breathe during the bad times and keep hoping during the good…
July 2nd, 2010 at 12:22 am
burntsienna, I’m in awe of your story and your courage. Sometimes it can be so hard to find gratitude, to understand how this could possibly be what God intended for you. But He walks with you and he will lift you up. God bless your path and your condition. Thank you for sharing your story – I am praying for your peace and your joy.
Much love from a stranger
xx
July 2nd, 2010 at 12:27 am
I hear you, Sienna. You’re in my thoughts, despite the fact that we’ve never met. MS is a very, very difficult disease, and it’s easy to think that you’re fighting it alone. You’re NOT fighting it alone-you have the love and support of the Flower Child, and millions of people you’ve never even met.
July 2nd, 2010 at 12:31 am
MS sucks massively!!
Icant fix it but I’d really like to pray for you if that’s okay
Han
July 2nd, 2010 at 12:33 am
Oh, I do feel for you — I honestly can’t imagine what it’s like, and for that I am truly grateful. So thank you for that, for helping me appreciate being healthy. But, of course, this isn’t about me. This is about you, and all that you, in spite of your illness, manages to do. Like writing a long, well-written and honest blog post. I do admire you. You are incredibly strong.
July 2nd, 2010 at 1:04 am
What an incredibly moving post. I can’t even begin to imagine what you are going through, you must be so strong. I am sending lots of love your way and hoping that things will improve for you. *big hugs*
July 2nd, 2010 at 1:40 am
Sienna – huge, huge, huge prayers, thoughts, love and peace coming at you. I can only imagine what you are going through, but know that we are all here holding your hand along the way.
H
July 2nd, 2010 at 1:45 am
oh honey, i dont know what you are going through but i feel your pain as you write so eloquently and shine so brightly… i will pray that guardian angels look after you and make it a little better or make you better able to cope with stuff… and i WILL remember and appreciate how lucky i am… thank you for sharing beautiful soul xxx
July 2nd, 2010 at 1:56 am
Sienna, your courage is simply amazing and admirable. There is so much love for you out here. Please stay strong!
July 2nd, 2010 at 2:28 am
You’re so strong to keep up and I don’t know from experience what you’re going through, but it sounds pretty much like it sucks and I’m there for you in spirit. Keep it up! Oh and I don’t know if this would help at all, but apparently it does work for some people who can’t read anymore….it’s called RapidReader I think and it’s pretty cool. Words flash onto the screen as fast as you want them to and it kinda feels like someone’s reading to you. Hope that helps. <3 <3
ps. praying for ya. as cliche as that may sound….i am. really.
July 2nd, 2010 at 2:38 am
Sienna,
You are definitely in my highest thoughts right now. We are all given unique and amazing gifts and talents in life, but unfortunately we are given unique challenges and difficulties too. While I can never imagine what you are going through right now, I can hear in you a voice of strength and desire that is coming out of your writing. To me, it sounds like you have the amazing and unique gifts of resolve, determination, desire, and strength to live life they way you know you are meant to.
I will say a prayer for you and keep you in my thoughts.
July 2nd, 2010 at 2:41 am
Sending you strength, stamina, understanding and love. I am a Reiki Master and would be honored to send you Reiki energy to help bring you peace. Many people care about you and the world is a better place for having you in it. Don’t give up. Keep the faith!
July 2nd, 2010 at 3:27 am
Sending you love and positive thoughts. Facing something like this is incredibly difficult and I want to let you know that I’m thinking of you! Stay strong. <3
July 2nd, 2010 at 3:48 am
Your post moved me. I don’t know what else to say other than you have my prayers and support.
July 2nd, 2010 at 4:03 am
Hola Sienna:
i’m sending you a warm hug from Panama city in Central America. I would like to share a deeper message but my english is very basic
…
I found a quote that speaks about a hero like you: “Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength”
FUERZA SIENNA, FUERZA!
July 2nd, 2010 at 4:05 am
Sienna,
I just wanted to let you know that you are so incredibly amazing & that you are such a beautiful person. When things get hard and depressing and painful and absolutely disappointing just remember that we all love you so much. We’re here for you and with you, and so is God. Keep hope & keep love. When that pain sets in and you feel like you’re in the dark, know that you’re surrounded with people who love you and value you.
I know that this may seem like a miniscule thing, but I can’t imagine what it would be like if I couldn’t read without physical consequences. If you ever want someone to read to you over the phone or something let me know (krisklam@umich.edu). Seriously.
Much love and prayers,
Kristin
July 2nd, 2010 at 4:10 am
You are so strong to have made it this far already.
Everything happens for a reason, even if we never find those reasons out.
Life is not a walk in the park. It’s a mountain climb.
It’s easier to fall down the mountain than climb back up. But you know what?
The view is from the top.
Much love.
July 2nd, 2010 at 4:23 am
I can’t pretend to truly understand, but I want to encourage you to keep being awesome and beautiful and strong, and keep on through the storm. This is a sad post, but I thank you for writing what needs to be put in words. Good luck <3
July 2nd, 2010 at 4:35 am
I cannot find words to express the way this makes me feel. You are an incredibly strong woman, and I respect you more than anyone, after I’ve read your blogs. What you are going through is terrifying. I wish I could come give you a hug, but instead I’ll pray. Love, a stranger.
July 2nd, 2010 at 5:04 am
Sending good thoughts your way
July 2nd, 2010 at 5:49 am
I can’t tell you anything that no one else has or will nor will I pretend that I can. But I hope you see all this Love and let it in and take comfort in it. So much love.
July 2nd, 2010 at 5:49 am
I’m not going to be the type of person to say I’ve been there because I haven’t. But I want you to know that during the most hardest times in my life, I’ve found comfort in my faith. I don’t know much about you or your beliefs but I know that you’re in pain and so does your Heavenly Father. I’ll keep you in my prayers tonight!
July 2nd, 2010 at 5:50 am
My prayers are with you and all others with similar situations. I can’t even begin to imagine what you go through, but through your struggles, you are showing more bravery than most people ever do. I’m proud of you and hope for the best for you.
July 2nd, 2010 at 5:52 am
I know I can’t understand, but I imagine it’s very difficult. But I want you to know, that just by reading this post, I could see how strong you are, and if there’s anyone who can make it through this, it’s you.
Just know that you’ll be in my thoughts, even though I don’t really know you.
Love, Kim
July 2nd, 2010 at 6:01 am
There’s not much I can offer aside from support, but you are in my thoughts.
I had problems reading for a long while recently due to some eye issues. I found that there were some books on tape read by famous actors that were a god send. If I find a voice I love, it can be soothing and entertaining all at once.
July 2nd, 2010 at 6:02 am
AM certainly praying for you, and begging for you not to give up hope! Your “eyes” and “legs” may fail you, but keep walking by faith and not by sight. Your short term memory may fail you, but think about the good times of your past and no matter what it feels or looks like, the present is a GIFT!
May God bless you now and always!
July 2nd, 2010 at 6:17 am
Sienna, there are no words from a stranger like me that are going to make everything okay. But i want you to know that i admire you for being a great woman, wife and mother. Hang in there and never give up.
You are in my prayers. Hugs from Panama.
July 2nd, 2010 at 6:24 am
Sienna
I can probably never understand the pain you’re going through, but just so you know you are in my thoughts. Remember its the little things that make life, the past 14 years have been tough but you have been strong through it all and I know you will continue to be strong =)
July 2nd, 2010 at 6:35 am
Dear Sienna……..May the Lord shine his face upon you and give you peace…..I just want you to know that I am praying for you!
(((hugs))))
July 2nd, 2010 at 7:26 am
Sending best wishes and good thoughts from across the ocean.
July 2nd, 2010 at 7:39 am
My prayers and hugs are with you.
July 2nd, 2010 at 1:22 pm
this post made me realise quite how lucky some of us are.
please don’t lose hope, just realise that there are tonnes of people out there thinking of you, and hoping you’re doing ok.
lots of love x
July 2nd, 2010 at 1:24 pm
p.s. audio books. they will work wonders.
July 2nd, 2010 at 1:49 pm
Thank you for being brave enough to write about your struggles. I wish that something I could say could make your pain go away, but I know that’s not possible. Just know that you’re not alone, and that many of us out here are thinking of you.
July 2nd, 2010 at 2:38 pm
Best wishes, and thanks for writing. I hope you find your inner strength when you need it most.
July 2nd, 2010 at 2:39 pm
The fact that you are able to write so eloquently about your situation gives me great hope for you. I will pray for you to continue to find joy in the unexpected places of your life. xo
July 2nd, 2010 at 2:47 pm
Thoughts and prayers are with you. I wish you peace and strength.
July 2nd, 2010 at 3:18 pm
You are dearly loved and you are never alone!
Thank you for sharing your courage, wisdom, and heart.
July 2nd, 2010 at 4:22 pm
I haven’t connected with something that I’ve read in this way in years.
You are not alone.
July 2nd, 2010 at 4:25 pm
I am so sorry to hear about what you are going through. It sounds like the worst nightmare and I hope that things become easier or at least more manageable. I can give no answers, but I can give you my utmost empathy and support. Take care of yourself, and look into audiobooks! So many books are available in this format with no eyes required. Through the worst of times, there will always be little reasons to smile. I hope you can find them.
*HUGS!*
July 2nd, 2010 at 4:30 pm
I’m so sorry to hear what you’re going through and how you’re feeling. Know you’re in my prayers & you have the support of a whole lot of people. x
July 2nd, 2010 at 5:17 pm
I can’t even imagine what you are going through right now. All I can do is pray for you and send lots of love your way. Stay strong. <3
July 2nd, 2010 at 5:19 pm
“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.” Lance Armstrong
You can do it!!! KEEP ON !!! ((((HUGS))))
July 2nd, 2010 at 6:15 pm
My thoughts and prayers are with you. I know that the universe delivers only what we can handle and when we cannot handle it anymore, others step in to carry the extra load for us…that is what we are all here for, to each take a tiny bit of the hopelessness, the despair and the pain. I would take it all if I could…
—a stranger who sincerely cares
July 2nd, 2010 at 6:55 pm
wow, even the slight grasp of your situation that my imagination can lend me leaves me pained, and yearning for hope. We don’t know each other, but know that tonight God will hear my prayers for you! You are loved. And whether you feel it or not, you are strong. My words will fail and fade but the love that you God and others have for you will last forever!
July 2nd, 2010 at 6:58 pm
wow, even the slight grasp of your situation that my imagination can lend me leaves me pained, and yearning for hope. We don’t know each other, but know that tonight God will hear my prayers for you! You are loved. And whether you feel it or not, you are strong. My words will fail and fade but the love that God and others have for you will last forever!
July 2nd, 2010 at 7:10 pm
My mom has MS. So I know what it’s like. She’s just been through a relapse. I witness the pain and the struggle people with MS go through. So I’m just letting you know, I’m thinking and wishing for you. And hoping you’ll be back on your feet soon. I’m sorry. It’s an awful disease. I hope you’re on good medication and scientists really need to find that cure!
With love from a stranger. Peace.
July 2nd, 2010 at 8:12 pm
I have no words to describe what I’m feeling right now, but I am thinking of you. *hugs*
July 2nd, 2010 at 9:13 pm
I can’t begin to know what you are going through, or what you’re feeling right now.
What I can do is think of you and pray for you and send you all the love and encouragement I have to give.
I may not know you, or be there physically to give you a hug and buy you a coffee – but if I could I would. Know that there are many, many people wishing the very best for you and your family.
xxx
July 2nd, 2010 at 10:14 pm
I can’t imagine your pain. I do not have MS, nor do I know anyone who does. But I do empathize. I can see that it pains you. Pain is something that I’m familiar with, even though it might not be the same brand as yours.
My prayers and thoughts are with you – you, a total and perfect stranger.
You have a strength that I doubt I have. You are an inspiration. Even if you can’t read, even if you can’t walk – know that someone read your post and is now a better person because of it. Know that I care – that we care. You aren’t alone.
You matter. And you’ll beat this. Because you are strong, and brave, and all-together wonderful. And I know that you’ll fight like hell.
-Nyx
July 2nd, 2010 at 11:03 pm
i wish you every happiness, you deserve it.
thinking of you.
x
July 2nd, 2010 at 11:28 pm
My heart hurts for you — I can’t fully understand the pain you experience from this disease, but I can understand the feeling of being held back my something mentally/physically. But remember: You are strong. Your body may betray you, but your spirit, your mind, your endurance — they are strong! Life is more than walking and seeing, you are more than your legs and eyes. This pain may seem unbearable, but life is so much more than pain. You are loved! You are loved by so many, more than you can imagine.
You are in my prayers, and I hope you can feel God’s love wrap around you
July 3rd, 2010 at 12:27 am
Sending prayers and lots of love your way.
July 3rd, 2010 at 1:18 am
Although we are strangers, my heart connected with yours while reading this post. Your story, your emotions, your life… they have moved me. Know that you have friends across the world who are thinking of you and caring for you every day. Stay strong!
July 3rd, 2010 at 1:35 am
i’ve never met you, and you’ve never met me, and i doubt we’ll ever see each other in this life, but i’m not going to let that stop me from putting my support behind you. i just want to let you know that you have hundreds of people rooting for you, and we all know you have the courage and ability to make it through these struggles. we all have you in our thoughts. cherish life, and stay strong.
July 3rd, 2010 at 1:56 am
Hi,
I think it’s quite courageous to actually even be looking in the store, considering that which you haven’t wanted to consider…Your heart is open to the next step..Please do not allow Fear to sabotage, instead allow Faith to lead…
I cannot imagine what you must be going through, but I do know with all of my Being that Love and Light are being sent your way and you will be guided through each and every step…You may not understand, you may at times want to rail against, but as long as you allow, you will be guided. You are loved beyond measure..when you look to the sky allow the moonbeams to Light your heart, the stars to sparkle their Love and know you shine as bright as the moon, you sparkle like the stars…We are all One..together.
Much peace…
July 3rd, 2010 at 4:06 am
reading your post makes me sad and i wish i could help. hopefully you will read this and know that i am wishing for the best for you and i hope this makes you smile.
you are not alone!
July 3rd, 2010 at 7:20 am
Words fail me right now, but remember you are loved so much.
Just keep swimming, just keep swimming.. <3
September 7th, 2011 at 6:35 pm
[...] I’d suggest love bombing my friend BurntSienna. Her latest post, “I Don’t Want To Go Here”, is on her blog, burntsienna.wibsite.com. [...]