The response to my last post was sooooo overwhelming! I’m still answering your comments! Thanks so much for reaching out and I think on a certain level it helped all involved. As far as MS goes sometimes it feels as if I can only take so much before I pop! And pop is what I did last week. You got to see my inner most vulnerable fears and thoughts laid out right before your eyes.
Though my rant didn’t literally change my circumstance, it made me a less tense person. It allowed me to press the release button. Most of the time I put on a smile to make others feel comfortable while I slowly shrink a little inside. This probably in the long run is damaging for us both. I need to consider being more sincere with those close to me. I probably share more with you guys than I do with those around me. It’s safe and convenient to write it here. Nobody’s watching. And as I mentioned before I secretly think all eyes are on me when I am out in public.
I am usually very positive but I do have “down moments” and for the sake of honesty and authenticity I feel compelled to share them. I know I changed nothing. The things that bother me are still here. I’m just a little different. I am glad my storm of hate has passed but I must admit it was very liberating. I compare it to yelling your favorite swear word *%@? after you bump your toe or something. It’s instinctual. Nothing changes but you just had to get it out.
The thing is I generally only share my M.S. complaints with a certain select few, including you. I do know no one wants to be around someone who is constantly complaining. Plus, as they say, “It could always be worse.”
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Oh, bulls–t! You do not owe anyone an apology for stating what is inside my dear Nicole. You also gave quite a few folks a chance to let it out!
We all feel trapped (most of the time) with this dragon we carry on our back, fighting daily the chance of a fire!
Much love and prayers your way my dear. No need to feel aplogetic for stating how you “really feel.” As you saw, there are many, many of us that feel the very same!
Faye, You got me cracking up! I guess you are right!
HI there! I like your blog! Would you mind checking mine out??? I just started it. Any tips??? Thanks!
Keep up the great work Nicole! Blogging/writing about our MS journeys and our individual way of coping is a great release and learning experience all together. If you would like to check out my blog that I have used to create poetry mostly and some other uplifting messages you can visit the blog at http://www.desingyourdestinyonlne.blogspot.com
I look forward to your next post! Take care! God Bless!
Christine,
Thanks and I will check out your site! I release new posts here on Tuesdays!
I too, would like to thank you for your posts, I enjoy them greatly. My usual reply to the ‘How are you’ question is .. ‘I’m well, thank you’. On occasion I have replied to the inquiry with the all purpose ..’could be worse’ when sometimes I just feel like screaming my frustrations into my pillow. I also, don’t like to share my concerns and complaints too much, but through your posts I find information, humor and hope. Thank you again.
Deborah, I know the it can always worse routine.
I’ve turned to the day bit “I’m xxx today”
Thanks for reading!
When people tell me it could always be worse…” I usually just reply… “you’re right.” But then there are days I too, need to vent. those are the days I reply…”Today for me, is worse. Thank-you very much!”
BeaJae, Okay, so I’ll take that line out of my next post immediately!
No, but I truly understand your plight.Thanks for reading!
We all need to vent & your last post allowed us all to do just that! We can all be HONEST with each other with regards to how we REALLY feel. I also despise hearing able bodied people whine about their aches & pains. I try to never coplain to others how I feel or am doing….most people don’t want to hear about your illness; they prefer to talk about themselves. Nicole, you & the others that post here are the REAL FACE of MS, and not some advertisers conception of what it is. I say, walk a mile in our shoes, or socks in my case! While I have your attention, I have some severe swelling of my ankles, I feel a direct result of sodrul med taken intravenously. Has anyone else had the same symptoms? My doc has no explanation. In the meantime, keep posting, it keeps me going.
K
Kim, Thanks for the major words of encouragement!
I admit to you I was relieved to read that post. You shared truth, sometimes we put on a happy face but it’s really sad underneath. We have to vent sometimes and share and that’s when everyone sees they are not alone. They see themselves in you. Oh sure we have to be brave and even now I am ready to pop. I have no health insurance and no job. I rely on hubby and he wants no bills so I do not go to doctor anymore and he is too proud for me to get disability and it looks like I just vented on your dime. I am one who fell between the cracks of help. I guess I have to pull up my bootstraps and make changes. Hugs.
Nancy, I’m glad you Understood. Thanks for reading and jeep coming back! Especially, if you need to vent!
I am so glad to find sites and people like you who are going through this. My husband tries to be understanding, but he gets tired of hearing about this all the time. I stop talking to him about it and start holding it in. Then I find message boards and blogs like yours. I know I am not alone and I am not crazy when I feel like screaming on the top of my lungs. Thank you for your insight.
Courtney, You are so welcome! I’m glad you’ve found a safe haven too! Thanks for reading.
I was raised to “put on my big girl panty’s” and deal with it! Well I do but…I still think to myself…get the f over yourself! You are complaining about the stupidest nonsense! It’s usually the drama mamas at school pick up that are the worst! I’m in a powerchair (or gogo cart as I call it). I let them go on cuz I DO NOT WANT PITY! just people to be aware of how good they have it! Tired of hearing “your beautiful. I can’t believe you can’t walk!” thanx for the compliment but MS isn’t a punishment for people that don’t look like what you consider pretty! I wanna say, your not attractive inside&out yet I’m the one who can’t walk, is in pain 24/7, had to forget all of my hopes and dreams for life and can’t even make the stupidest plans too far in advance because of MS! It’s priceless to have a place to vent! I keep it all in&get so upset. Thanks for my safe place to vent!
Tonia, You are very welcome! Hit me with your best shot!
I just read all your post. I found a new family… I Don’t ever complain to anyone about my MS. I do pretty well besides having to drag my leg around sometimes and forgetting words etc. I try to get up everyday and thank God I can walk today. But their’s days I would like to let loose and scream and cry for someone just to listen. My parents were raised to deal with life, however it comes,no complaining. They don’t understand just because your being negative about your illness,life is not always negative. Like Max said people don’t want to b bothered. I’m usually the one who is empathetic to others. But when I’m having a bad day and someone complains about how tired they are. I want to scream. I hope I can be part of this family. I need it..
Take care…
Susan
Susan, I totally understand. Just this morning a friend made a comment about how I sleep late. It took everything in me not to scream at her.Thanks for reading.
We cannot always keep things bottled up inside.
I do find that people that have to share this adversity or any other can be much more compassionate because we all” speak” the same language.
I’ve learned to take life one day at a time…what more do we have?
when I am my “bluest” I will go and listen to all my Motown favorites, sing my lungs out and dance a little if my legs are willing.
who said “Life was fair”….. I just did not know it could be so unfair at times!
Liz M.
Liz, We are in this together. Thanks for reading!
A fair is where you eat cotton candy. I learned this a long time ago when I had cancer. Bad things happen to good people. We have to accept this.
Hi nicole, i agree with you, our circumstance hasnt changed it does feel good to let it out. I think its good to let it out, some people hold it in because were built Ford tough (we think) then were misarable. Then theres those that complain allll the time, i read some people post and they start early in the morning with how bad they feel. And i notice its the same folks. We all feel bad but lets not focus on it everyday and bring everyone down. I read your post each week and i love it, were basically both battling our the ability to walk. Keep up the good work lady, we love it.
Dee Rob, We have to find that happy medium.
I understand what you mean. Besides my sister – there’s really no one in my RL who completely understands. Sometimes, I feel like people don’t really want to be bothered or perhaps that they are frightened – What do I say?/ What can I say? Ill say nothing. It’s the safest thing to do.
On my blog I write about MS every now and then, because I know there are people who ‘get it’..
Grateful for an internet to express ourselves. Im glad your storm of hate has passed over. But always know you have tons of us out here to share it with.
Max, I’m grateful for this community we’ve erected too!
Yet another powerful post from you. Thank you for liberating us all from having to hold back from expressing how distressing this disease is. Our need to vent, if only occasionally, was confirmed by the overwhelming response you had to your post. You provided a safe place where we could do that responsibly. My deepest thanks. Just coincidentally, my poem tomorrow is about honesty.
Judy, I told you we were a good team!
Nicole you rock. Love your posts and look forward to them. This community you have shaped is an inspiration to all of us. It shows what one person can do!
Lisa, You are so kind!