You are not alone
A life with Multiple Sclerosis can be a physically challenging, emotionally draining, round-the-clock exhausting and lonely job. Everything we do takes an extraordinary amount of effort to complete and some things become nearly impossible to do causing us to get really creative in finding an alternative to our otherwise normal way of doing things.
I want you to know that no matter what you are facing today or how difficult things become tomorrow…you are not alone! There’s an army of us warriors standing shoulder to shoulder, together in this fight.
If you cried in the shower this morning because you were so unbelievably overwhelmed with the load you have to carry and feel as if the whole world has flipped upside down, inside-out and turned up on its end…you are not alone. Somebody else cried, too.
If you find yourself staring at piles of laundry, a sink full of dishes, shoes tossed in the hallway, unmade beds, dirty toilets and are fighting the guilt of the day coming to an end with everything still in the same place it was when you woke up…and then you find yourself wondering “what did I do today?”…you are not alone. Somebody else wondered, too.
If you miss running with your kids, attending graduation parties and baby showers, standing in long lines waiting for tickets to the best show on earth, and joining in on all the fun everyone else seems to be enjoying…you are not alone. Somebody else misses it, too.
If you woke up exhausted after a full night of rest and are trudging through your day longing to go back to bed so you can sleep just a little bit longer…you are not alone. Somebody else did, too.
If you wished you could still be part of the buzz around an office, the business of deadlines and bad morning coffee, cranky bosses, nosey employees and water cooler gossip…you are not alone. Somebody else wished, too.
Maybe not every person’s experiences with MS are the same and the difficulties you face are different from mine, but I am convinced there is someone, somewhere in the world who is going through the same overwhelming moments as you. Just because you don’t hear about them or know them personally, doesn’t mean they don’t exist.
Keep hanging on. It’s okay to feel like you’re falling apart because in many ways you are…well, your nerves are so I guess that’s the same thing since they are a part of you. Eventually things will get better and you will find ways of coping with all the changes. I can guarantee you that.
Right now the days may seem long and the pain may outweigh the joys. It’s tough…I get it, but it’s not impossible. Let’s carry this burden together. Let’s offer a listening ear, a gentle hug or a nod of understanding to those beside us. We need each other. That’s how our strength grows.
I carried out a couple of small tasks in the yard today which took a lot of effort. I remotely thought about sharing my accomplishments with my supportive husband, I didn’t as they seemed “so insignificant”. After reading this article though, I realized you would have to have MS to understand how momentous these small acts really are! Thanks for letting me know that there are others in the same boat.
So true
Thank you!!
Pam Cee
Needed this today Penelope
It sounds very familiar. . I hear you
Your writing is a blessing for us, Penelope. The talent you have to express and give meaning to what we go through is very helpful. I don’t have support from friends anymore. Many are long gone over these 21 yrs. To anyone who got divorced because of MS, I feel your pain. I have discovered strength I never knew I had. God bless us all. Focus on everything you still have. It helps to be positive.
People do not understand the diease until they have it.
This is so true, my husband has progressive ms and ms related dementia, last week was the 1st time he did not know who our daughter was, it is also a disease that has a very hard impact on the family unit, as supportive as I was when he was at home there were days that were so hard to be with him, he is in care now, it took a long time and therapy for me to accept that putting him in care was the right thing to do. My prayer is that there will be a cure one day.
🌹🌹😘
Be well.
I don’t pretend to know what it is like but know you are in my thoughts ,and we can all pray one day there will be a cure ..🌻
Its hard to look after someone with dementia but PMS as well us so much harder. Sending you big hugs. You did the best thing. No point killing yourself, let those trained to deal with this take over. Spend lots if time with your husband, he might not know who you are sometimes but when he does it is a lovely feeling. Had this with my dad, just the denentia bit. I am the only one who can boast of having MS
Debbie Cant Davies as we know Deb , care homes give family’s quality time to spend with your loved ones which is precious
I have been helped by the Florence Nightingale Group for my shower and getting dressed that has helped me and is good to me and Janice. This is the only help we have and that may be good for us, but I’m not holding my breath.
People please understand
You will feel like this most of the time so let the world and people keep you happy and have a sense of humour please PPMS person
To all of you brave ones…the warm shower is comforting after tears….keep going… so many medical breakthrough s are emerging….
I cant be bothered to shower at the moment strip wash and hair wash in sink with jug
Take care Kevinxx
Jason Carpenter
❤️❤️❤️❤️❤️❤️ Always thinking of you
Thank you Penelope. I needed to hear that. You make us laugh but you also validate our feelings because you are going through it too. Hugs.
So true and the best time to have those tears ! Dry yourself off and start again
Prayers for all of you that have m.s. It sucks
❤
William Cunningham
THANK YOU!!!!! 😉
Life..
I cried in the bath not great in the shower lol
Just to walk in the door and turn my house alarm off is exhausting. My right side just doesn’t want to work anymore. I’m tired.
Stay strong ❤️
There’s isn’t a lot that can be said Trudy but thank you for your kind words
Mary –
I don’t know what to say to you- ❤ Trudy
Yes
This is my husband’s FB page I too have Ms I just take it day by that’s all we can do I delt with this for years and all of us just need to be strong cuz it’s not going away God bless all of be us I always tell myself this is not going to get the best of me have Ms and seizure disorder I always look it at this way we could have something way worse God bless to you all day by day that’s all we can do
Dawn Hinsch, Danya Wilde, Kirk Wilde
Then get out of the shower and hide all the pain, the best we can from every living soul. I did the hiding for years, the cost was extremely high. I would never hid it, if I had to do it over.
I do that most days and between 2 and 4 in the morning the silent tears
I wrote my resignation today the guilt of giving up versus accepting this is not going away
GodBless
I cry most mornings in the shower. I have M,S. for the rest of my life, even though i have plenty of friends who have M.S. & some who hav’nt i feel so very alone. My husband is so supportive as is my daughter so why do i feel like this?
Depression my dear
My M.S. is my problem, Debbie Cant Davies not depression
Having a bad day today after yesterday’s 34 degree weather and not slowing down my activities. But tomorrow will be better.
🤗🤗🤗😇😇👍👍🐱🐈😁💚
Thank you for the encouragement. Really need it. Need to really get down to getting things done around here…an unsure future, just never know. Thanks Penelope and you all.
Thank you Penelope. Xx
Thank you x
Yes true words and I do my crying in the shower all the time as I hate my husband seeing me crying. MS is hard word to work with normal days or nights. Hope all ok much as you can be.
Yeah, not a good day for me either… I hear ya, loud and clear. Gotta love MS. 🙁 As if it weren’t hard enough as it is. *sigh*
So very true, everyday is a new day, have to start over everyday.
Perfect words for how we feel and feeling alone breaks your heart
Today I am feeling exceptionally fortunate. I have pain that is so intense and diffuse that every movement is a challenge. I was stripping the sheets off of the two twin beds in mine and my husband’s room when my son came in said “mama! Stop! You should not be doing this,I will take care of it! You will wear yourself out before you start your day and I can see your pain in your eyes.”
It doesn’t get any better than that. He is a treasure for sure. I am loved and respected and grateful for all of my family who take wonderful care of me.
We take care of one another! Love you.
Yes I cry behind closed doors, into pillows and in the bath these are tears of pain, frustration and sadness
Me
My husband became ill last night and I had to step up (with my walker) and do dog care, supper clean-up, and locking up the house. Also had to keep an eye on his condition (dizziness and vomiting.) I was able to do what was necessary but felt so vulnerable.
Hoping Joe is better today! Love to you both
Love you, Meg. Hope Joe feels better soon!
God Bless you both. Both stay strung & positive. 💞
So true. Needed this neen so fatigued hard even get in shower!Thanks again!
Shirley mnd would be just a challenging… you are never alone
Thanks Helen, absolutely yes. Everyday little things are a huge exhausting task and the similarities with MS remarkable. Thank you Penelope 😊
Your descriptions/depictions of life with MS are always spot on. Thank you.
I needed to see this today,been feeling kind of bad for a couple weeks,Thank you Penelope for ur page
Thank you. I needed to hear that.
Comforting as always. Blessings to you
Thank you for helping us all know we’re not alone.
thank you, having one of them days,,,,,,,,,,,,,,,
Sometimes I need to see these posts as a reminder to myself but I don’t always have to be strong I am allowed to have moments where I break down and that’s okay I’m not alone in this
Absolutely! Crying, feeling overwhelmed, even hopeless, etc are normal human emotions. Your positive artitude remains part of your personality. It is therapudic to go through these emotions and not have them build up, which can be stressful and exacerbate your symptoms. At least that’s what I believe. You are indeed not alone.
Exactly;/
I had to put my lab down this weekend, now I am alone.
Ann.. you are not alone we had put our Husky down recently miss him so much. Saw article recently sbout MS and service dogs.
I do feel very alone
Wow thanks so much for sharing.
life sentence..yes Fran Chisholm I agree…
I was diagnosed in 2016, 6 months after a car accident in 2015 & I was only 22. it’s hard not to think of it any other way! i love reading things like this, because it reminds me I’m young but, i’m not alone and other people feel the same way.. all we can do is be there for eachother for a shoulder to lean on ❤❤
I needed to see this today!
Thanks for sharing this article with us all Penelope
Perfect words for today and always …… ⚘⚘⚘ thank you Penelope
Feels like a life sentence
So true. I do the same. Still can’t believe I have it even though I have had MS for 16 years and finally diagnosed correctly 5 years ago.
And you are not alone either Penelope. Love, MStrength and Healing from me..x
Dis So Waar
Would love to find a cute pair of shoes
I have some ideas on this. My shoes must have tread, a cover or strap over them, be lightweight, and have significant support. I’ve had MS for 34 years. Often I’ll find a great sandal or shoe and it’ll be discontinued. SAS is my go to sandal that meets all 4 criteria, and some are stylish. Me Too has this new sandal-I ordered 2 pair- Adam Tucker by Me Too. None of the brands I buy are cheap but footwear is my most important investment in QOL.
Thank you! My son is getting married next October,just want to dance at his wedding with him.Honestly brings me to tears
Yes it sure is !!!
Don’t feel alone! I always have an open ear to listen @smyelin_raygurl on the ms Insta family ❤
Don’t forget it’s ok to cry. Sometimes it’s all you need to recognize this is hard and won’t go away. Cry your heart out wipe that last tear away, now that you have shed that turmoil ❤ get ready to fight again
Rachel Wilson crying has become a huge relief for me. I try not to do it in public, that’s embarrassing for everyone, but letting it out instead of always trying to hold it in helps me get over it much more quickly. A good cry does wonders.
Yes true.. I cry most of time when I’m alone,so not to upset my family x
Beautiful. I am blessed to have a partner who take exceptionally good care of me and our home. But if I had the ability to cry (I’m working on it!) I’d be crying in the shower with you. (Figuratively speaking.)
Yes…..So true…I do my crying in the shower so not to upset my husband
So true x
You are fabulous. Thank you for this.
Arm in arm.