Hi Everyone-usually, I post positive posts or pics, but today I’m not feeling that way and I want to share my true feelings.
For the last 6 months daily, I feel like a 95 year old lady moving around. Can anyone relate? I am more stiff, and in more pain. This is besides eating healthy, exercising, stretching and even counseling. This is MS at 7 years. Things have been changing more physically for me and it feels like a decline. The two relapses I had the last two years, I never recovered from in the same way as right after diagnosis. It’s been a partial recovery, which takes many months or I just haven’t recovered. The reality of this scares me sometimes and I think about my future and my family. This is MS progression and it’s beyond my control or anyone’s. It’s just the nature of the disease. Sometimes, I want to hold the reigns back and never let them go. I wish I had that power, lol but that’s a dream.
What I can do is hope for the best and do what I can to help myself. I don’t think I’ll ever fully accept MS and that’s ok as my counselor even said, but “fighting” is dealing with it and not giving up.
Thanks for listening-Nikki
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nicoly3467
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Yes, I can relate, too...thank you for having the courage to say what you truly feel...sometimes, I don’t feel like being so positive either, especially when my body says different...we’re only human...there’s healing in just telling it like it is...I had my moment yesterday...I was frustrated with my limitations...so I cried it out on my pillow last night...today, I feel better...goes to show, our emotions are given for a reason...to suppress these could make us more ill...we need to cut ourselves a little slack sometimes...it’s healthy and could even energize us...sending peace and prayers to you and your dear family, Nikki🕊
We can indeed relate. Every once in a while we do want to cry into our pillows, or ask why me, or worry about the path forward. Yesterday here was lovely. I was busy in the garden when without warning a black mood descended and I felt the exhaustion that I had been pushing away. With that mood came a flock of unanswerable questions: how long can I do what I love doing, what will I do when I can't, why work so hard now if it's pointless...and for a few minutes I wanted to walk away from it all. Then I heard woodpeckers calling, the phoebe saying her name, and a redbird came by in a hurry of wings...and I took a deep breath, put the tools down where I was working, came inside, drank some water, and forgave myself those down moments, knowing that I will finish what I start and do what I can for as long as I am given. And today is a new day with a dark bank of clouds on the eastern horizon, the sun burnishing their tops with gold. I send you V hugs.
I “hear” ya, goatgal...and thank you for being open in sharing your true feelings ...like you, I’m fully present with appreciating nature....just truly grateful for all the little gifts around us...it sure is healing and helps keep us grounded...btw, I like the way you write...returning vhug, friend! 🤗
Ah, Nikki, the MS family understands your feelings all too well. Every once in a while we can be forgiven for wanting this to go away, to be always as we were on our best days before we knew, before we experienced the puzzling and frightening manifestations, before we became aware of our slow slide. It's human to drop the brave face for a bit, to share with us here the psychic pain we all feel. Each one of us is incredibly brave and quietly heroic. And though I know that photo you posted doesn't represent the way you felt posting this, it's the way I think of you -- sun splashed Arizonan, strong and confident astride your bike, an incredible photographer of doves and other Southwestern birds, all the pain, uncertainty and disability invisible.
I understand, Nikki, because you have the same concerns, and fears that I have. I do feel, and probably look, so much older than I am. My hubs is constantly telling me that I should exercise more, go outside more, blah blah blah, but it doesn't make things necessarily better, just different. I try to do more, but sometimes that isn't the good thing to do. Just do the best that you can, keep being positive (that's why I always say "Keep Smiling"), and keep up the good fight! Keep Smiling, sending you gentle vHugs, and I really look forward to your beautiful bird photos! F16, F18, F22 count as 'bird' pics!
Nikki and Carole, I am sorry you are feeling blue. I hope it has to do with the current psychosis relating to COVID-19 and will pass. I was diagnosed 6 years ago, and my MS has definitely progressed. The one thing that has kept me going is Ann Boroch's book "Healing Multiple Sclerosis." It has completely changed my life (and my husband's because he now has serious diet restrictions). Definitely no gluten!
Thank you for this information, IFwczs I have a gluten sensitivity so I have avoid gluten for many years. Food certainly affects my mood, and the crumbier my diet, the crumbier my mood! Keep Smiling
I avoid lactose, I limit my sugar (but that is hard sometimes), and salt. Key is moderation. I love my vegetables, and lately, I have noticed that I am not eating as many fresh vegetables as I would like to. And you, IFwczs , what do you avoid in your diet?
I finally became a convert when I read Ann Boroch's book "Healing Multiple Sclerosis." My Integrative Medicine PCP told me to stop eating dairy, gluten and sugar back when I was diagnosed 6 years ago. But did I listen? No. The book had me convinced. I have stopped eating gluten, dairy, sugar (I eat stevia instead once in a blue moon), oranges, peanuts (I've never really eaten them), regular (not sweet) potatoes and corn.
I too, am trying to follow the diet presented in the book, Healing Multiple Sclerosis. I think that you and Jazzihorsecat mentioned it in many of your posts. I was avoiding gluten, lactose, refined sugar long before, and I have noticed an improvement in my over all well being. But I need to avoid more foods as I have noticed that when I ingest them, I feel crumbier. On thing at a time, and I believe that you are what you eat, always. Be Well, IFwczs
Carole, I am thrilled you are incorporating this book in your regimen. Yes, Jazzihorsecat was the one who told me about it. It is great you are following it!
I hope that you were well . I have RRMS since 1998. I would like to think that in the future all be better for us, with only a pill for all, like now somebody is looking for a vaccine for covid 19.
I think of a better future!
MY steady physical decline is emotionally draining ans lack of control stuff. Covid-19 makes it worse.
your counselor is correct ...fight it don't let it win ...we just have to find other ways to make what we are having trouble doing ...keep fighting it ...we are here to listen ...we are all having different things going on also...i just have to keep going and going and finding other things to keep me busy and fight thru the pain stretching and what ever works at the time ...talk to the doctor about maybe changing your meds maybe you need to take something else that will work better for you ...hang in there ...
Hi any Nikki, and thanks for sharing, and as many have said , we do share your pain. There are days when my body feels like it is made out of cement and I am functioning in quicksand. I have to remind myself that I am exactly where God wants me to be and He has and always will get me through whatever I am facing. My faith is stronger than my fears and I will pray the same for you. Please hang in there.
Hi nicoly3467 , your post really connected with me on several points.
I was diagnosed 4 years ago, and from all outward measures I am doing much better than I was back then. My main issue is “moving like a 97-year-old lady”, as you said. (I’m still in my 40s so it feels like a real ripoff!)
Here’s where I really felt a similarity though - That balance between “fighting” and “accepting” MS.
It seems like I can get really mad at people for telling me I should “fight”, when I’ve been working really hard to “accept the new normal”, “do what I can”, “forgive myself”, etc. Then, I can get really mad at people for telling me to “accept” MS, when all I want to do is beat it with every last drop of strength I have, to “not let it win”, to “be a warrior”.
There’s nothing else like having a crushing illness that literally beats you senseless - AND THEN - being called a coward for letting it knock you down. Right? I mean really. You get screwed coming and going.
Anyhoo, I’ve been a natural slavedriver all my life, flogging myself to work faster, harder, smarter, so my struggle is more often to allow myself a break from all the henpecking that my subconscious metes out on the daily.
Like you, I do all the things I’m supposed to do to control the symptoms of MS. I follow the advice. Diet. Stretching. Reducing stress. As in the rest of life, I expect RESULTS from doing all this work. But let’s be real. It doesn’t always pay off.
The reason MS is a such a stinker is because of the TOTAL LOSS OF CONTROL. It doesn’t matter if you “fight it”. It doesn’t care if you “accept it”. Sometimes what makes it worse is barometric pressure, or temperature, or normal tiny stressors, or even the excitement of happiness! You can’t fight or control these things. ...THAT’S WHAT MAKES ME CRAZY MAD!
Eckhart Tolle has talked me down off the ledge a few times. I listen to his strange mechanical voice, telling me that suffering is not necessary, that over-thinking is the enemy, that “being in the now” is the key to real joy... and on most days, it really does help. I can stop trying to find a way to FIGHT the MS, I can stop thinking about how I should ACCEPT the MS. I can stop all of it - and - I CAN JUST BE. Try “The Power of Now” or “Stillness Speaks” on Audible.
That’s all I’ve got. Here’s to all the “old ladies” out there! (And old gentlemen!) “You are not a human doing. You are a human being.”
The good thing is you are not alone! Most of us have all gone through what you are feeling right now. I might add that acceptance of this disease may help you. It doesn't mean you are giving in to it. It gives you freedom to fight it! It's hard to fight something you don't believe is there. It takes some of the weight off your shoulders as you don't have to carry any other tools to fight except what you need to fight MS only. The other thing I do is look at each day as a new adventure. I never know what is going to happen. MS can be so predictably unpredictable! In other words, how you look at having MS makes a difference. It doesn't stop me from doing what I want to do, it just changes how I do it. I can no longer do what I used to do the way I used to do them. I can't just take a walk whenever I feel the urge. I have to plan it, make sure someone is around if I need them. I need to make sure I have a cane or walker with me, as any kind of "matter", visible or invisible, in the air will trip me. I have to make sure I have my phone with me in case I can't make it back to where I started. I never used to think twice about it, but now I have to make a plan. I have to do that with everything I do. I don't like it but it is what it is and it's easier to work with it rather than try to work against it. I don't consider that "giving into MS" but working with it, cuz its there and I can't stop it but I can make it better to deal with. It's the same concept as getting older. You can't stop aging but you can work with it and still enjoy life. Praying you have more good days than not.
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Here is a letter to the people in my life who I call the normals. I hope it all fits. I can be a little mouthy from time to time.
Is MRI of the brain enough for exploring MS?
Ok I am Done!
Dx with RRMS but always have symptoms
