When I write something, 99% of the time it is positive. Well as you could probably tell by the title, this post is going to fall in the negative 1%. Lately I have been frustrated and disgusted by a number of things so I decided to summarize them and vent a little.
I hate tripping over nothing.
I hate that I’m sick.
I hate how MS makes me feel.
I hate that I’m getting worse.
I hate that stupid handicapped placard.
I hate when people say, “But you don’t look sick.”
I hate that I can’t drive anymore.
I hate using canes, walkers, and scooters.
I hate how expensive medicine is.
I hate how hard it is to be declared disabled by Social Security.
I hate using adult diapers.
I hate that I can’t wear high heels anymore.
I hate that companies profit off of sick people.
I hate that the TSA checks my wheelchair before I can get on a plane.
I hate that I am tired just from typing this.
I hate that I am damn near blind in my right eye.
I hate that MS makes me hate.
I hate that I can’t do anything anymore.
I hate that there is no cure.
Please add your hate below.
I loathe hating but do and hate that
I hate that virtually no one believes me
I hate that my family turned their backs but for my son
I hate that my mother loves how ill I am and works tirelessly to make my life worse
I hate being so poor and will soon be homeless for the second time since dx in 08
I hate being told I’m crazy when I’m sick
I hate pain, fatigue, stiffness, body falling apart
I hate I lost my home, money, job and most of my family
I hate I can’t work
I hate that I went through every MRI, Lumbar Puncture, diagnosis, procedure alone…
I losing respect and friends I once had
I hate losing the critical thinking, memory I once had
I hate always trying and trying and working to stay healthy and put on a good face when I always am suffering
I hate not being able to do things
I hate that my family had a secret Christmas without me in 2012 and hate that I hate all holidays now
I hate watching my life and body fall apart
I hate that I am very close to not caring what’s next
I hate I spent years loving, giving and helping to my own detriment
I hate my circadian rhythm
I hate that most of the people I loved the most are gone
I hate that I don’t trust anyone/thing anymore but for a few
I loathe most medical professionals especially as they didn’t mention how huge my lesion was, how many or that i have a brain cyst…not important?
I hate that I feel like no one….like when my mother said she was forced to have me i want to scream then why did you? so I can tell you how great you are for 40 years then die slowly while you enjoy it?
I hate being below Maslows Hierarchy of needs all the time
I LOVE myself but I have been smart enough, creative enough, worked hard enough and have been strong enough to still have good times and have had hopes for the future and HATE i don’t feel I can battle one more day…
and like all of us, I will face today and tomorrow with all I have and try to be happy even though I all I do will be sad-packing to move, finalizing my dad’s estate, and making plans to get far far away from a place that has only bad bad memories…there vented, purged, facing another painful day body, mind and soul. I must ADD I LOVE the few who stuck with me, you’re angels…..
Cindy, That was powerful. I too have a mother who wasn’t thrilled to have me. It is a strange place to be in and effects everything.
I am glad you still have good times. Stay strong.
I hate that I can’t sit in my favorite chair.
I hate that I can’t wear fun shoes or boots anymore.
I hate that I can barely type this.
I hate loaner wheelchairs when my chair is being repaired.
I hate that I can’t visit family & friends because I can’t get into their homes.
I hate that I get so fatigued I can’t open ziploc-type bags.
I hate that my baclofen pump isn’t working… again.
I hate that I can only “work” in my garden for about 15 minutes.
I hate that I am jealous of my friends with significant others and/or children.
I hate that I recently got my finances under control but am becoming less and less independent.
I hate that I have to dedicate half a day to shower.
I hate SPMS!
I hate that there are things to hate.
Thanks for letting me vent, Nicole! Stay strong!
Michelle, You are welcome, Come back anytime.
I hate that even my family thinks ms is no big deal b c it’s not cancer…I hate that they tried to suggest I was an addict c bc I have to take narcotic pain medicine…I hate that they don’t realize when I have to cancel plans it’s not b c im lazy….I hate being so tired all the time…I hate that I can’t do things I used to do like workout I can’t even walk upstairs w out almost passing out …I hate when people say we r feeling sorry for ourselves bc so many people have it so much worse….I know that but ms is progressive and unpredictable one day I woke up paralyzed in my legs and a bladder that just shut down I hate that no one believes me….I hate canes wheelchairs walkers especially when I’m only in my 30′s….I hate how showering putting on make up getting dressed takes every ounce of energy I have…I hate when people tell me I look fine I can’t possibly b sick or I need to get out for walks more or eat more…I hate that people judge what they don’t understand!
Kim, Me too! You should come back on Tuesdays. I post new stuff. But thanks for stopping by today!
I hate that this disgusting ruthless disease continues to take another piece of my mother just as soon as she adjusts to one loss, I hate watching her fear and humiliation when carried out of of house because we don’t have a ramp and she musters her strength and her smile to come here and visit with her grandchildren , I hate when I visit and sort thru mail on a we’d and go back the following we’d she was too tired or depressed to make a few calls to follow up. I hate that my mother who wi
L always be the most beautiful lady, the most courageous, the most positive and motivated person I know seems Defeated and moans with pain when her legs won’t stop tingling or can’t move her body to get relief. I miss my mom and hate she is suffering
Stacie, I don’t have any kids, but if I did, I hope she’d be as caring as you seem.
I hate that I have experienced pain so intense in my eyes, and limbs that it made having kidney stones and a hysterectomy seem like they only needed a little band-aid to cure that discomfort.
I hate that it was probably the participation in clinical trials a decade before to “cure” my psoriasis that has been blamed as the biggest contributing factor to me developing multiple sclerosis.
I hate that I no longer have the capabilities to continue my career, have been labelled as disabled by the government, and due to the fact that my latest symptom is cognitive (loss of concentration and usage of memory – there is no hope to retrain me by the government)
I hate that since my memory left me, I can’t remember anything for the past 18 months of my life unless it is written down in a journal, a picture was taken AND I HAD ENOUGH OF AN EMOTIONAL CONNECTION TO THE EVENT TO NOW REMEMBER IT WITH ONE OF THOSE existing documented reminders.
I hate that having decided to use my artisitic side, and fine motor skills I was going to take the hobby of making jewelry into a little business to feel like I once again had purpose and worth in the world.
I really hate that after investing in materials for this dream, that the MonSter decided that I didn’t need the functionality of my left hand.
I hate that my previous co-workers seem to have forgot me, and do not return calls. I hate that my friends and family walk on either extreme line – that I look to healthy to be sick, or since you are sick why are you out doing things.
I hate that one day I can wake up and feel like the normal old me, and then am exhausted and crawling back into bed after only having a shower and brushing my teeth.
I hate how much drugs cost, I hate that I am getting more depressed, I hate how long it takes to get to see a specialist and that they see only one non-working part of me, not a whole person.
I hate living out in the middle of nowhere in a beautiful home that I have no support from my husband and his successful career, and have to make a plan on taking my pills to manage a schedule if I want to drive 45 minutes to grocery shop, swim in a pool, or visit my favorite bead store.
I hate and having a hard time adjust to not having a pay-check that allows more than making monthly payments on a vehicle.
I hate that I see more fault with what I have in life that I do the good.
Leasa, I’m right there with ya in spirit. I can totally relate.
Wow!! Looks like a lot of us have a lot of “Hate” for this disease. Well, include me in!
I hate that I am not SPMS!
I hate there are no meds once your out of RRMS!
I hate that I may not dance at my children’s weddings!
I hate I may never see my grandchildren!
I hate to watch my husband do everything around the house!
I hate that taking a shower consumes every bit of energy I have!
I hate missing out on so much in these “so called Golden Years”
I hate sitting on this sofa “every day/all day”
AAGGHH!
I hate that I have to proof read everything!
First hate should be: I hate that I am “now” SPMS
Once again…..AAGGHHHH !!
Faye, I gotta say the same right along with ya.
I hate that I have SPMS too.
It’s great to share the same hates with someone isn’t it???? LMAO!!!
Faye,
AAGGHHHHHHH!!!!!!!!!!!!!
Nicole,
You are my kind of gal. I hate everything that comes with MS. I tell myself everyday You MS, will live with me I won’t live with you, but I still continue to hate it. I miss who I was and now I am having to learn who I am all over again. When I read your post I thought to myself now there is a gal who truly gets it. People have no idea, because they say, you look so good, I hate that phrase, and when I say I am tired, they say I know what you mean, NO THEY DON’T, and that makes me angry. Keep up the good work here, I truly enjoy your site and I will be commenting as you relate more information. God Bless.
Debra
Thanks a lot. I will look forward to your comments. New posts come out on Tuesdays! It’s so nice to really be understood!
I hate the fact that i did steroids to help my ms and in return Im told im a diabetic,have high chorlrestrol,because i did the stroid treaments for MS.i was never told this could happen.hate doctors
Patricia, I didnt know that either. That must have been infuriating to hear!
Just found your blog…already a fan! Can’t say as I have any thing new to add, although one thing comes to the forefront.
I hate it when I dream about my ‘preMS’ life and my body is whole and healthy and all is restored. These halcyon glimpses are like pouring acid on wounds that stand little chance of healing. I gave up my dream career five years ago…isn’t it about time for my subconscious mind to stop tormenting me with what could have been!
Janine, I’m glad you found the site! I do apologize for taking so long to reply. Well welcome aboard and I release new posts on Tueadays. The very samethings happen to me and my dream career! I had a dream about it last week from which I awoke in tears. But most nights are not like that. Thank goodness!
I hate that I have to plan everything I do so I don’t run out of spoons
I hate that I just had two weeks leave and didn’t really do anything
I hate that my bed now has a dent in it I spend so much time there
I hate that I’m looking for ‘wedding crutches’ to walk down the aisle
I hate that two year olds walk better than I do
I hate that my career has been scuppered thanks to this stupid disease
I love that you gave us all the chance to vent!
Nat, you are so vey welcome!Thanks for reading.
I’ve been at this a LONG time but no one has ever allowed me to HATE it. Thanks so much. It feels real for just this once. Then I can go back to making everybody else feel OK about it.
eb
Elaine, Wow what a comment! I think you may have just given me an idea for my next post! Come back on Tuesday!
Thanks for reading!
I hate that we never get any days off being challenged by this disease.
Some days are better than others, but MS always seems to be around a corner….some corners longer than others.
Thank you, Nicole, for this blog and giving us all the opportunity to speak ” the same language” to each other.
Ahhhhh, the darkness only way to get out of it is to shine some light on it, let it out where people understand what the heck your going through. I have become obsessed with making eye contact with others that are limping, i want to run up to them and say omg do u have ms? Please say you have ms, please hug me and tell me you understand and i am not all alone! Heres a hug for you sweet nicole, thank you for shining a light in the dark. Thank you for letting it out i needed to scream this we too! Luv, peace, and light! Xoxo Olivia
Olivia,
You are not alone. I too wonder why someone is in a wheelchair? I can still walk with a cane but I feel I can relate.
I sit in the handicapped section when I go to concerts. I do ask what the other peoples problem are and a lot of the time it is MS. There is a common bond as we understand the difficulties of life with a handicap.
The only good thing about MS. is the parking!
I’m scared because I’ve just been diagnosed with MS.
I’m doubtful of the medical profession that suggested I was highly strung. I’ve been debating a diagnosis with them for 6 years.
I’m happy I ignored them and started nutritional therapy 6 years ago.
I love that I’m 30 and back at University to finish my degree but I hate that my concentration and clarity is fading.
I love that I live in a woodland yurt half of the time running a conservation and community project off the grid.
I hate the possibility that MS might stop me living so freely.
I hate the itching I get under the skin on my head and the burning sensation on my face.
I hate the creeping feeling on my arms.
I hate the flashes in the corner of my view and the feeling that I have a membrane over my eye.
I hate the weak bladder, especially at 6am on the London underground after a reggae party when all the city people are heading to work.
I hate the cloudy thinking and the short term memory loss. Just little things like my pin number or suddenly not knowing how to get somewhere I’ve been a hundred times.
I hate feeling like I have a spring in my leg and that I suddenly can’t figure out how much pressure to apply to my step.
I’m scared of the nauseating vertigo I had for nearly 2 months, I don’t ever, ever want that back.
I hate that my boyfriend is angry that I’m angry.
I hate hearing him say I’m giving him a hard time.
I hate that I now feel I have a monopoly on the hard times.
I hate hearing myself talk this way.
More than anything. I hate being alone with my body as it attacks itself.
Kana,
It sounds like you have a lot going on! I’m glad you went back to school! Ysyy you. I toyed with the idea but started this blog instead! Thanks for reading and please come back Tuesday1
Welcome to the club nobody wants to join. I am sorry you are so scared and I wish I could tell you can overcome it, but I am scared and I have had symptoms since 94 diagnosed in 05. I don’t think it is possible not to be scared, you learn to control it and live with it.
In a strange way you get used to it. We have no other choice.
kana,
you are not alone have faith that you will adjust and enjoy EVERYTHING that you are still able to do..Don’t let fear and worry lead your day…I know its not easy but I speak from walking the same path you are on….
I understand how you could feel that way and I hope it helps to vent. I hate having to see my beautiful daughter sitting in the wheelchair (stroller) when she should be out with her husband or friends.
I hate seeing my daughter so dependent on others for even simple things most take for granted.
I hate not knowing what I can do to make things better for her. I’m supposed to protect her from all the harm.
I hate seeing her face when she has to ask for help to move her leg.
I hate that she can’t skate, run in the park, or ride her bike.
I hate her having to take all the various medications, later to find out that the medications have caused other problems.
I hate the stress that she has just trying to get through the day.
I hate that my sister is not here.
I hate that my faith has been tested, and I think I have failed.
I hate that my venting may not bring a change.
I hate how people stare, but don’t ask why is she in a wheelchair.
I hate how using the bathroom in public places is so inconvenient, and the stalls are so small.
I hate she has to make sure that her chair can fit where she wants to go, or not be able to go because the chair can’t go up the stairs and there is no elevator.
I hate that MS has taken over her life.
Just discovered your blog and I’m grateful for your efforts. While I can’t disagree with any point in your “vent” since I’ve experienced the thought of them all. Getting such thoughts and feelings out sure lessen their load for me. When I was first being diagnosed in early 2006,one highlight of my week was to be well enough to make it to church! One Sunday, still before I began treatment, I was grumpy
to say the least because I was almost too sick to make it and my tremors were so bad that I could hardly stand it but made it to one of the last available seats. However, there were 3 remaining chairs available just in front of ours and just as I finished complaining a young mother & father came to sit with there teenage son who had a severe case of Parkinsons, and they were all smiling. Well not only did this make me cry, it taught me that there is always somebody in worse shape than me. Lesson 2 came about 6 months later when I met Paul Vavoichech (sp?) for lunch. Paul was born without arms or legs and travels in a stroller. He’s probably in his mid 30′s and was on of the most inspirational people I’ve ever met. His story is out now in book form and is titled “Life without limits”. From that point I decided that compelling was not going to be part of my disease or it would help it rule my life. While I have lived every day with similar issues everyone with MS share, I’m careful to discuss the negative aspects of my disease with those close to me or others with MS because I have to get it off my chest as well. So thank you for providing a platform to communicate with birds of a feather and I look forward to catching up on all your previous postings in hopes of learning something to help me better manage my life and disease. Have hope and be encouraged, we are part of a chosen group that may one day help the world be rid of a terrible disease!
Tim, What a beautiful comment. Thanks so much for lifting us up. If you looked over the site you saw that everything is not gloomy! I post on Tuesdays! Sorry, it took me so long to respond.
Thank you, tc.
I am a dad in exactly the same position that you describe so well and so movingly.
This is heartbreaking for everybody Nicole, you have obviously touched a nerve and a deep place in so many folks with your “list”!
Thanks for your courage!!
Reed,
WHo would have thought?
I love this post!! Good for you for using that 1%..it’s cathartic..
dani,
Thanks I was on the verge of doubting myself!
You are HUMAN you do what you need to do………
Citi,
Thanks!
I hope venting helped you. I get mad then I think of my sister who passed away in 2008. Her diabetes took both legs and one eye and blinded her other eye. She had severe pain in her legs which were gone (phantom pain) and no feeling in her hands whatsoever. I think of the years she suffered and I tell myself I am fortunate. Medicine given me made me worse and more symptoms. I wish there was a cure for all. I pray someday it will happen.
Nancy,
I feel silly for complaining at all! Thanks for reading and please come back!
I hate needing to think about how to lift my legs to walk across anything but truly flat floors- and even my house has transition strips in doorways.
Lisa,
You are not alone! Thanks for reading! I release new posts on Tuesdays!
Wow, something must be in the air. Heck I posted about not being able to think on another board, and people thought I might be suicidal, so I’ll refrain from posting it here.
I hate my increased difficulty putting together coherent thoughts when I am stressed.
I hate applying for a job through the disability office.
I hate thinking of myself as disabled even knowing there is no shame in it.
I hate the stress of feeling like I should be doing so much more.
I hate the stress I put my wife through.
life well lived,
I feel the same way about the extra stress I put on my husband. Thanks for reading!
I hate that my last post was submitted before I was finished!
I wanted to add that while I hate that I no longer walk the way I used to, can’t do all the things I used to, can’t even wear the kinds of clothes I used to, I was thinking the other day that where I am now, I’m. thankful that I can still do some things, even if I do them REALLY SLOW. I”m thankful for that, and I believe we’re closer than ever to a cure. That’s the hope I hang onto that keeps me going.
shaydee5,
That goes for me too!
I also loved this post. I hate many of the tbings you and others said. What I hate the most are the strange looks I get from people when they see me coming with my weird walk. People at work who know me give me a secretly sympathetic look, trying to be friendly without being obviously curious about my condition. People who don’t know often just stare and wonder what the hell is wrong with me.
shaydee5,
Thanks.Yes, I could relate to many of the points brought up here. Thanks for reading once again.
i hate every single blasted thing about it…. and i hate knowing there’s not a ding dang thing we can do about it… and i hate that research is waning and we are going to be left with very few trying to figure out what the hell is going on here….
thanks!
sherri, Good to see you. Even though its under such blasted circumstances!
I hate the loss of my independence!!
Sue,
Me too! It’s the worse. Thanks for reading.
after reading everyones posts,makes me think. so im not the only one who feels like this, the need to vent (,always do it to people i love) and people who do not have ms can not fully understand the way we feel .family friends cope in there own way with dealing with it , people with ms cope much much more differently ,some people dont understand how hard life is,the simple things like ,walking without aid ,working ,wearing high heels, dealing with so many headaches,tiredness ect…….. i can go on and on . i cant do the things i used to do and it pisses me off…..rightly and it pisses me off that im still waiting to talk to a ms doctor and all the fears of the unknowen
bella beattie,
Me too! I don’t often vent to others for fear of scaring them off. Thanks for reading!
OK that’s enough hate… Nicole, I LOVE how you always reply to every person who comments on your blog. You are a truly wonderful person!
Denise,
I agree with you, but I have to continue to respond to what I put out there!!! Consequences!
I hate that my memory and speech is trashed because of MS!
I hate everything about MS! Prior posters have covered all my hates! Thank you for your blog it’s one of the very few things about MS I don’t hate!
Brenda, Thanks so much. It’s nice to know we’ve been very thorough!
I hate that i am not me anymore I am the chick with MS that sucks
i miss me.
Tanya-Marie,
Thanks for reading, I bet you are still there beneath all the muck!
I too miss me. It sucks when you were vital and now MS. I had plans!
Lisa,
Oh the lost plans! Thanks for reading!
Well said. I was ranting this morning, but while your post reminds me of the many things that suck about MS, I am also reminded just how little I personally have to complain about.
On the other hand–sometimes we all have to vent (I did earlier) then we can get back to remembering the good things in life.
denverrefashionista,
You’re right. Every once in a while we’ll vent!
I’ve made this post the focus of my poem tomorrow. It will have a link to this amazing post.
Judy, We do good together!
Iy hate that my husband has to do every single thing that I should be doing. I hate that he has to clean the house, fix dinner, make our bed, do the laundry, by the groceries all on top of his full time job.
I hate that I watch my life go by from the side lines.
I hate that I can no longer volunteer at my six year olds school.
I hate that I can’t wear heel’s, can’t ride a bike or take a walk with my family.
I hate that I have to ask for help, ask others to take me places.
I hate thawt I can’t walk on the beach or stand in the ocean.
Rebecca,
I can certainly relate. My husband does everything around here too! And I have the nerve to complain about his cooking! Thanks for reading.
I love this piece. I can see by the number of responses here that you touched a lot of people, myself included. I feel the same sometimes. I cried like a baby when I realized I had to quit working because of the disease. It seems as if no one but another MSer understands where you’re coming from. I also hate the phrase, “but you look so good.” It’s all invisible handicaps for me. No cane for my brain which follows it’s own direction more times than not.
I hate dealing with the numbness, tingling, and pain that occupies every crevice and second of my existence. I hate that I can’t play with my boys any more. I hate that I get up & get dressed just to feel like going back to bed. I hate having to ask for help every second of every day. I hate being so young, 35, & feeling sooo old! I hate that I have to travel through such beautiful mountain scenery & know that there is very little hope for me to ever have the chance to explore them. I hate feeling like my dreams, goals, and hopes have all been stripped away from me just when I was reaching out to grab them. Most of all, I hate feeling so much hate & anger that causes this dark, black growth that began to grow inside me when I acquired this parasite we call MS.
Monica, For some reason, until I started this blog I didn’t realize there were so many of us out there. Thanks for reading. Please come back things aren’t always this dreary. But still realistic.
I hate that I’m a burden to others. So I’m finding ways to use my skills and make a career for myself despite my illness. Some days I’m scared that I won’t be able to do it. Still, I’m taking every step I can on every front to make me a stronger me so that I can face tomorrow in a better way.
I hate that it’s a downward slide into an early grave. But ya know what? I’m bigger than that. That’s just one small, tragic fact of my life. But every great character has flaws. Otherwise, they’re just two-dimensional. It’s our battles that make us mighty. And I can make this look awesome.
I hate that some days I’m just an inconsolable mess. Yeah, I just have to bite the bullet that sometimes I SUCK. But that’s human, right? Sometimes the only way out is through, and we pray for forgiveness on the other side. And we can laugh at ourselves. Laughter always helps.
Pamela, I understand.That’s the most sincere message I can send. I understand. Thanks for reading and please know that I put out new posts on Tuesdays.
You are now being followed ^_^
Pamela,
Thanks!
HATE IS A VERY STRONG WORD, BUT NECESSARY TO DESCRIBE MS. I ALSO HATE THIS DISEASE & WHAT I HAVE BECOME WHILE MOURNING WHO I WAS OR MAY HAVE CONTINUED TO BE. SOMETIMES IT IS GOOD TO VENT…BETTER THIS WAY THAN TOO TAKE IT OUT ON THOSE WE LOVE!!
I JUST GET SO DISCOURAGED BY ADS THAT MAKE MS SEEM LIKE IT’S CATCHING A COLD. IT’S NOT & THERE NEEDS TO BE MORE OUT THERE THAT PAINTS THE “TRUE” FACE OF MS & NOT SOME ROSY PICTURE OF IT OR WHAT SOME DRUG COMPANY WANTS YOU TO THINK IT WILL BE LIKE. THAT IS WHY I LIKE TO READ YOUR SITE; IT TELLS IT LIKE IT REALLY IS BECAUSE IN THE END WE ALL HATE WHAT IT TRULY IS. KEEP ON BLOGGING NICOLE; I LOOK FORWARD TO YOUR POSTS EACH WEEK & VENT ON!
Kim, What a compliment! Thanks isn’t nearly enough. This shapes me into the woman I want to be. Thanks for reading!
I hate how white I am because I cant stand the heat so I tell friends “no” when they invite me to the beach. (Yes, this is suppose to be funny! I am as white as a ghost! Laugh!!)
I hate being depressed. Sometimes for no reason at all and I cant explain it or why.
I hate that I get frustrated over everything. Sometimes for no reason at all.
I hate that I dont know anyone personally going thru what I am to talk to. Its so hard to explain to family and friends what I am going thru, I dont want to bother them, them be sad, or them feel sorry for me.
I hate how people say sorry and I dont believe them because how can they be sorry when they dont have a clue whats going on with me?
I hate being so tired I dont feel like doing anything but I feel worse when I dont.
I hate how people tell me that I need to “rest”. I dont want to “rest”, all I can do is “rest” and I am still tired and I still cant feel my hands or I still cant walk.
I hate how I cant sleep at night even tho I am beyond tired for words.
I hate that I worry about waking up the next day worried about if I am going to wake up and being able to walk or feel my hands.
I hate how I forget things that happened just 5 mins ago but feel dumb asking again.
I hate using my walker because I am 21 yrs old and I feel like I shouldnt “have” to use one till I am “old”.
I hate how steriords make me feel and what they do to me. How emotional I am all the time, how I gain weight like crazy, and how I am just in a “bluh” mood.
I never REALLY knew what the word HATE meant till they said I have MS.
I could go on for days saying why I hate I hate having MS but I believe God made me for MS, for some reason or another.
But the biggest hate is:
I hate how it makes my friends, family, and babies (my dogs!) feel. I know they get emotional, frustrated, etc. for me and all the issues I have with my MS. They are the most important things in my life and I pray for a cure so no one will ever have to go thru the things I do. I pray no friend or family member ever has to hear that someone they know and love has MS.
I am not good with expressing myself on how I feel thru spoken words but thru written word is a little easier for me. These are my deepest secrets that I have never known how to express and I am happy I can finally share them with people.
Thanks for letting me vent!
Jessica,
You are always welcome to vent to me. You can even reach me through the contact me section. I understand and believe too that as horrible as it is I do have it for a reason unknown to me. Thanks for reading and do know that I release new posts on Tuesdays!
It’s awful that SO many loving, caring,talented and formerly hard-working people are struck down in their primes and once-happy folks are shunned by so many “friends, neighbors and supposedly loving family. We are not contagious and need those people to accept us as we are; we did not ask for this nor expect it! HATE is a terrible word and wasn’t used in my vocabulary much…before…..but I hate this blasted MS and what it h as taken from me! We all had plans of things to come, I’m sure….and I had worked so long and hard for others to have not only what they needed, but wanted, often; now I’m discussed “over”, left out and made as an excuse if someone needs one to get out of something. I am me! Hello, still in here, but trapped in a body that simply won’t allow or cooperate with what I’d truly love to be doing!!!
Janet, I thoroughly understand. “in the prime” Yes I am in the prime.Thanks for reading!
I hate all the pain.
I hate that I can’t walk well.
I hate always pretending that I am fine when I am never fine.
Margie Neil Rahimi, It’s hard to have to pretend for the sake of others. Thanks for reading and please come back soon! I post on Tuesdays!
MS- I HATE YOU FOR TAKING AWAY MY ABILITY TO FEEL STRONG AND CONQUER THE WORLD.
I HATE THAT I CANNOT GO FISHING ON THE OCEAN, A ROWBOAT ON A LAKE DOES NOT CUT IT.
I HATE THAT I HAVE TO GIVE UP TRAVELING. NOT MUCH FUN STAGGERING ACROSS THE CASINO FLOOR WITHOUT A SOU TO DROP IN A SLOT MACHINE.
I HATE ASKING FOR HELP.
I HATE THAT NO ONE CAN FIX ME AND THAT I CANNOT FIX MYSELF.
YET WITH ALL THE HATES, I DO NOT HATE MYSELF!!!!
Renee, I’m glad you have a healthy perspective.Thanks for reading and come back next Tuesday!
I also hate MS, being disabled, not being able to drive, lack of energy, not going into work etc. but…
Because of MS I’ve created ny own website (www.aid4disabled.com), I can now play bridge, I can be at home with the dogs, I now know my neighbours a lot better, I now go to the shops, I’ve met new people
MS is a horrible disease, I make no bones about ir, and you have said manby of the thingsthat are horrible about it but I believe that it is vital to look for the positives and be positive.
Patrick You are right and I don’t dwell on these things. I’m happy that this website proves that. I feel as my friend, Judy I can acknowledge the gifts I have recieved and still hate MS! (LOL)
I hate not being ok all the time.
I hate that I live with numbness as if it is normal.
I hate that the numbness has become normal.
I hate living with the threat of going to an ER to face horrible drs.
I hate that Ive read places where diets can heal and yet I dont change my diet.
You know what I hate the most?
I hate being hateful.
That’s a piece of a poem I wrote 5 years ago, but I still feel like that sometimes. I would add three lines now though:
I hate that my bladder function seems to be slowly leaving me, Im not even 35 as yet…
I hate that I don’t really have any friends anymore
I hate being lonely
I hate feeling like I don’t have dreams and goals anymore
Thanks Nicole, It’s so nice to have a place that we can vent about things every now and then.
If I can say something to DeeRob – I don’t know you, but I knew my mother who also had a chronic illness – your girls will never see you as anything but their strong can do anything mom. You’ll always be their strong can do anything mother.
Max, I never imagined I would get such an overwhelming response to this and thanks for yours. Yes, I hate being hateful too. It’s not an attractive look! Thanks for reading!
Aaah thanks max. I hope they de
I hate that I can not hike in the woods anymore or dance
Cindi, Yes, I miss dancing too! I forgot that one. Thanks for reading! And please know I publish new posts on Tuesdays!
I hear you, Nicole. I don’t usually use the word hate … it is such a strong word, and seems the most un-retractable word. But I understand your total frustration that has to be released now and then, and the internet blog is the perfect place to let it out with people who do get it.
I just saw the lawyer’s add a moment ago saying that ‘if you’ve been refused social security assistance, call me…’ and I’m angry that teachers can’t call him (in some states) because we have our own pension plan and so aren’t allowed to contribute to social security. I worked for nine years before teaching, and contributed to SS then, but could not apply because for the last thirty years I’ve taught, in a state with a self-funded (we pay it all) pension plan. He (the lawyer on tv) makes it sound like all we have to do.
My partial pension is ‘enough’ and we are fortunate in that. It takes thirty two years to reach the top benefit, but I’m close enough. There is no disability boost for teachers who are disabled after ten years of work …. a ten year pension is ‘enough.’ I am lucky i made it to thirty.
But I’m tired of that man leading everyone to believe that we can all get SSDI benefits.
Terry, you are right. He does make it seem that way. I can totally see how that would be frustrating. I hope you just got to let out a little tension! Thanks for reading!
I hate every single stinking thing about this disease!
Muff
Muff,
I understand!
I second that! I really hate what it is doing to my family!
Kshanski, I know me too! Thanks for reading always.
I hate being in pain all the time. I hate not being able to be intimate with my husband. I hate that I can’t remember things. I hate that I can’t walk up stairs or long distances. I hate hating this disease!
Thank you for this. I feel a little better knowing I’m not the only one who hates what MS is doing to me.
Karin, Thanks for reading! No with MS you are seldom the only one!
Nicole, I celebrate your honesty. Though I can still “walk” (and I use that term loosely) with a cane, groom and bathe myself, drive, etc., I hate that I can’t work my garden anymore, can’t take a brisk walk around town and peek into store windows, can’t take a walk around the block with my husband and my dogs. Can’t clean my own house. Can’t concentrate deeply enough to finish writing my second book.
We each have our tragedies, we’ve lost something important. The thing we have in common, I think, is that we’ve been robbed of having the satisfaction of doing a thing ourselves, the joy of planning and physically completing a thing.
Please don’t feel guilty about resenting your losses and writing about them. It’s an occasional but necessary part of coping, yes?
Kim
Kim, Thanks for reminding of that. Oh yeah, I hate not being able to take a “quick” shower.
Thanks for reading!
Kim, I’m in the same situation as you. Still walking with a cane and various devices (AFO, HFAD, foot orthotics, knee braces). Still driving, though not sure for how much longer. Still working with the help of paratransit service, and telecommuting when I have the multitude of doctors appts, or just too tired or the weather’s too bad, etc. I hate that the black holes of memory caused me not to finish my doctoral dissertation. I hate that I needed a wheelchair to attend my son’s wedding in Negril last year. So…I really wanted to say I understand everyones’ plights in this MS fight, and I particularly understand your situation because it so closely mirrors mine. Fight on.
Shaydee,
Bummer that you couldn’t finish that dissertation; after all those years of education and then not being able to finish the last hurdle, you must have spent quite a bit of emotional energy dealing with that one.
Here’s a little irony to make you laugh: The second book I’m unable to finish is a memoir about having MS, lol. Actually, that isn’t at all ironic!
Enjoy your summer.
Kim
I hate that I’m dog tired all the time.
I hate that my kids’ eyes tear up every time we talk about my illness.
I hate that my hands are numb and sore all the time. Yes, I can walk. Mine went to my hands not my legs (so far). Makes a job at the computer tough, tho.
I hate that I cannot do knitting or crochet anymore.
I hate that it is now moving up my arms, and steroid treatment did not do are darn thing (except make me sick).
I am glad I found your blog. You have practical, real-life views and comments on living with MS. As a newly-inducted member of “The Club”, I find this informative and supportive. Yes, even the “I hate” post.
Melissa, I’m so happy you like this site and see that all my posts are not like this! But through several comments I’ve realize that’s it’s ok to vent sometimes!Thanks for reading!
Nicole, I have MS. I’m 47, have 3 grown children and a husband. I also have a very large family. No one really understands. No one has dealt with MS before in all of my family. My mom had an attack of RA 20 years ago and every time I mention a symptom she refers back to hers. I hate the comments like: I drank something with caffeine the other day and it gave me the shakes…..I bet that’s what causes you to shake. Or: if you weren’t so stressed out you would probably get well. Or: you can’t tell me anything…. I know what that feels like. I also hate that MS has caused me not to be able to do the work I did for years, ran our family restaurant. I hate that I can’t remember things. I hate that the heat gets to me fast. I hate that these things bother me and I think you have to be a better person than that and not let it get to you. I keep trying to wrap my mind around my new normal and I’ve been trying to do that since Aug. 9, 2010. Also, you did an awesome job venting! “I hate” as odd as this may seem, was a work of art!!!
Lisa, “…work of art.” You are so kind. Oh, yeah it bothers me too when people compare their aches and pains to mine. Thanks for reading!
Thanks Nicolle,
I think it is so important to take the time and acknowledge the reality of this MS experience. We can’t be “up” all of the time – it is just not natural. And it is more than OK to spend time making notes of what we hate about this journey we are on. Once I am done with my list (which is sometimes WAY longer than I would like too admit) I take a deep breath and just spend time being in that space for awhile. It is ok to hate what MS had brought us. I hate so much of this experience, and that is ok – it is real. And so is taking time to acknowledge what we do like (even love?) about this crazy, unexpected, unpredictable MS experience (which I can tell you also spend time acknowledging!) Thanks for sharing your experience – it was a great reminder for me!
Linda, it’s so important to me that you know I’m not always in that space. I believe we can’t always be “up” too. I guess I just proved it. Thanks for reading!
I hate that I have to hate too! And I miss my high heels
Vent away Nicole!
Lorie, Thanks for supporting my little venting session.
I hate that I’m not there to give you a hug and tell you how awesome you are! *sending love and good thoughts from the A*
Ebony, Thanks so much for the hug and well wishes! It’s always nice to see familiar names come across the screen, even if I can’t see your smile! Thanks for reading!
I hate the mess I make on the floor when cooking – but I am happy
I hate falling in the pattern on a rug – but I am happy
I hate loking drunk, when I am sober – but I happy
I hate so many things – but I am happy and love life ;o)
sounds corny – well …
Annemette, I like the spin you put on your comment! Yes, I am happy too! Thanks for reading! I put out new posts on Tuesdays!
I hate that my friend is suffering!
I hate that I cannot be there enough for her.
I hate that this disease has caused her so much pain.
I hate that people stare at her.
I hate that there is no cure or magic drug to make her better.
I hate that my children will not know the person she was pre-MS.
I hate that she can’t see how beautiful and inspiring she is.
Leigha, Thanks for joining the party I got going on here. Forgot to say I hate not being able take a quick shower! Or not being able to do a quick anything!
I hate that I have to apologize for recognizing just how awful living with this illness can be.
I hate that my income is a fraction of its former self and that my savings have been devastated.
I hate that I had to give up my dreams of professional accomplishment.
I hate that my non-virtual circle of friends has dwindled to so few.
I hate the impact on my family life.
I hate that my brain goes wonky at the store and have to leave early.
I hate not being able to run down the street.
I hate having to hold on to walls and furniture.
I hate having to have this conversation.
Judy, Thanks for joining in. I don’t feel so bad now!
Hi Nicole, I’ve been reading your postings for some time…just observing and not responding until now. I do not have MS, but I have a friend with MS who has been confined to a wheelchair at a young age like you, I am feeling so much empathy for you, and since you and I are NOLA neighbors, I would love to take you on an outing some day (give your hubby a break)…..maybe when you’re feeling frustrated and alone? I am a single parent of a 20 year old daughter who is away at college. I am a nurse, living in Lakeview, working at home (medical record audits) so I have flexible during daytime hours. I’m just reaching out…..my email is lchaplain@ymail.com…..take care! Who love to hear from you…..Linda Chaplain
Linda, I would love to meet up! I always wonder how I can connect with more NOLA folks.
I’ll be emailing you! Thanks for reading!
I hate how MS consumes your life…it becomes the first thing you think of when you wake up in the morning and the last thing you think of before you go to sleep….there is just no escaping it
Denise, You are so right! Thanks for reading!
I know, I know, I know! I hate that I can’t stand the heat long enough to allow my 4 year old son to play outside. I hate that all his outdoor activities are done without me. I hate the isolation. My in-laws seem to be scared I might be contagious or they think my emotions, heart and brain are gone, along with the use of my legs. I’m through venting. I’m sure I could go on forever, but I’ll stop. This is just the tip of the iceberg. I don’t go here often, but sometimes it feels good to vent.
Julie, Every once in a blue moon I have to vent too! Thanks for reading.
Nicole,
My name is Lisa and I have Primary Progressive MS. I totally relate to your letter. Two weeks ago I was in despair and luckily I kind of bounced back. I am having to be conscious of being happy. It just doesn’t happen much anymore. I have a very small support group and I really have a hard time with that. Friends fall by the wayside and leave me alone. If they only knew their call could make such a difference in my day. I get very lonely because no one visits. I have lost much of myself to MS and I hate on it all the time. I hope you feel better and thanks for posting. I am not alone.
Lisa, I would be honored if you could include me in your support circle. We may not be in person but let’s not under estimate the power of the Internet!
Thanks Nicole,
I will read your blog every week and will look forward to it. You are an inspiration to me.
Lisa, Thanks for the support! That’s a comment I’ll accept anyday!
I now have PPMS too, so you are NOT alone, though my increasing isolation causes me to think that too. When I gave up my career, my friends went with it. If my phone rings at all, its usually a bill collector! I love that fb allows me to keep in somewhat loose contact with my childhood friends, but hate that I have to say no so very often to gatherings. Friend me on fb, so you will have someone new to talk to!
Renee, Will do.
I really feel for you. I too am so isolated. I would like to friend you on facebook but am not sure how to. My name is Lisa Stein Hammermeister. I will friend you immediately Renee.
Lisa, I think I just sent you a friend request! Check it out and see/
I HATE THAT MY LIFE HAD TO CHANGE
I HATE THAT I CANT SLEEP THRU THE NIGHT
I HATE I GET EXCITED TO GET OUT THE HOUSE THEN AFTER IM ALL DRESSED IM TO DAMN TIRED TO GO
I HATE IM NO LONGER ATTRACTIVE, AND NO MAN WILL LOOK AT ME
I HATE THAT MY GIRLS NO LONGER LOOK AT ME AS THEIR STRONG CAN DO ANYTHING MOTHER
I HATE THAT IM GETTING WORSE AND NOBODY CAN DO A DAMN THING ABOUT IT
I HATE HATE HATE MS
Dee Rob, Thanks so much for sharing. Sometimes it really helps to just get it out. I truly wish you the best and just know I can truly relate.
That is the worst one of all! The look of concern with a touch of fear in my children’s eyes at knowing that mom isn’t Superwoman anymore! :’(
Monica, It reminds me of how my mom looks at me when I’m struggling. It’s as if she would trade places with me in a second!
Amen sister!! Sometimes we ALL have to vent! I hate that there is no cure and that pharmacutical companies make millions/billions off of people.
Isis, I know but I feel so guilty actually writing it! Please join me again next Tuesday and I promise I’ll be better! LOL Thanks for reading,