I’m sure you’ve heard people say it. It’s been said to me a lot over the years. I worked as an RT at home for the most physically and mentally challenged children there are. I know it could be worse, it’s been worse. Why would looking at someone in a worse off condition make me feel better?
Instead, I feel I deserve better. I followed the rules, did and do the correct things. MS already took my job, home, husband, finances, vehicle and my independence. However, I have grown children, a grandson, family and friends. Most importantly God, who is always with me
Everything I attempt requires a dump load of paperwork, approvals, appointments, money, scheduling, pharmacy, etc. Cognitive issues get in the way.
I’m ok. Really just wanted to vent to people who really truly get it. Thank you! 🫧
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Wtfisup
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Validation! Amen to that. It’s just drains me trying to take a teachable moment to educate. It seems to me the community at large is better than in 1995 at being empathetic.
Thoroughly agree, sometimes people's feelings are not acknowledged and the symptoms that you get with MS especially as they can fluctuate are not recognized you can be expected to do the stiff upper lip and grin and get on with it. You have every right to complain about your condition. I started a really good course again recently, which is good about MS and in the discussion comments at least three people because they do not understand MS had stated about a good lifestyle, diet and exercise can prevent MS and stop it progressing. I felt so frustrated as although these things may help control symptoms it is more or less blaming the person with MS for their condition. My husband has MS for over a decade now and I know how frustrating it is for him and it is certainly not his fault he has MS either. Take care and all the best.
My daughter was diagnosed with Juvenile Diabetes at age 10, and the number of people who felt we caused it was astounding. I had near-strangers lecturing me about my bad parenting. It's very demoralizing.
I think my ex mother in law gave me a book called “1,001 Cures For MS”. She felt I should be able to find one. Get struck by lightening was my favorite.
I married her son in 1984. Top of my field, 2 healthy happy daughters, owned home and boat before diagnosed in 1995. He divorced me in 2005. He blamed it on ms. He and his family accused me of being drunk or on drugs on more than one occasion. I could not explain it to them (even did testing to prove it). Good riddance!
I have many blessings to count at night. I say my prayers and I fall asleep to them. Then when I wake up I say “Amen!”
Staying positive. You are truly an inspiration. Peace be with you and yours!
thanks for your post and venting. You, like all of us us with MS, even those of us who followed all the rules, didn’t deserve this. But here we are , chosen. So it’s ok to be frustrated, sad and angry and vent. Just remember, God never leaves you you, He is holding you through all of this even when we think it’s all we can take. God bless you
For the first 5 or so years I was able to stay positive by thinking of worse things that could have been causing my symptoms; brain tumor, ALS, etc. I try to stay positive, but 9 years in it gets harder as your body has more disability. I mourn for what I could do but will never do again. I rarely think of it as others being worse off than me but rather that I could be worse off. However, reality sets in and I have to acknowledge things will get worse. It is not easy to stay positive when this disease makes you have to think about how much effort anything you want to do will take.Luckily, we have this forum to share our thoughts and feelings with others who understand
The MS journey is very different for each of us. And as mentioned above, the years and years of fending off the disease to try to be ourselves and have the life we want and deserve to have is exhausting.
There's no need to add to the burden by being faced with irrelevant comparisons. It's like "My marriage looks better than your marriage" and all the social media hyper-promotions that make all of us look like we're not on top of the 'live your life' game.
Just be yourself, set your own goals, and tune off the comments that are not worth listening to. MS is tough. Many other diseases are, but we're the only ones to know how we feel.
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Injection and other questions
POST #2 I WAS HAVING A BETTER DAY UNTIL I FELL:(
I am here to learn how others cope with the everyday living of MS.
Has anyone gotten worse since starting Ocrevus?
