Being honest about MS

[kittysmith]

Venting:

I was diagnosed with RRMS in May 2008. My son was diagonsed with Autism 3 weeks later. With that, I put MS on the back burner and made my son my sole responsibility. He is thriving. At 12, he is in a regular middle school. He does so much for himself, I finally have time to take care of ME.

I am determined to keep fighting and making the most out of life. However, I am really having a hard time accepting that my eyesight will never get better. I've had ON 4 times. I used to be a voracious reader. I crocheted and made jewelry. I miss being able to do those things. I am going to start using a tablet to read, so I can make the print larger. Similarly, I am trying to find ways to still do crafts, like using larger beads, smaller projects that don't get overwhelming, etc.

Yesterday, I saw my therapist. I've been seeing her for years. Yesterday was the
first time I talked about my disease. She wants us to discuss it further and work on some strategies to help me deal with my "loss of vision" and how it has affected my depression and anxiety (which came along way before the MS diagnosis).

I am not angry. I'm just frustrated. I can count way more blessings than curses. I just hate admitting that everything is not fine. I try to be strong. I try not to complain. But, this change in my vision and knowing it's not going to get better, is a hard pill to swallow.

I am glad to still be working (even with the stress that comes along with working in a very busy hospital). I'm proud of the hard work my husband and I have done to give our son every opportunity. I'm proud of my husband for completing his Master of Divinity and becoming a chaplain. I am, by no means, ready to give up. Guess I'm just looking for others who have similar struggles. Misery loves company? Lol.

Thanks for reading. I look forward to your responses.

[KoKo]

Venting:

I was diagnosed with RRMS in May 2008. My son was diagonsed with Autism 3 weeks later. With that, I put MS on the back burner and made my son my sole responsibility. He is thriving. At 12, he is in a regular middle school. He does so much for himself, I finally have time to take care of ME.

I am determined to keep fighting and making the most out of life. However, I am really having a hard time accepting that my eyesight will never get better. I've had ON 4 times. I used to be a voracious reader. I crocheted and made jewelry. I miss being able to do those things. I am going to start using a tablet to read, so I can make the print larger. Similarly, I am trying to find ways to still do crafts, like using larger beads, smaller projects that don't get overwhelming, etc.

Yesterday, I saw my therapist. I've been seeing her for years. Yesterday was the
first time I talked about my disease. She wants us to discuss it further and work on some strategies to help me deal with my "loss of vision" and how it has affected my depression and anxiety (which came along way before the MS diagnosis).

I am not angry. I'm just frustrated. I can count way more blessings than curses. I just hate admitting that everything is not fine. I try to be strong. I try not to complain. But, this change in my vision and knowing it's not going to get better, is a hard pill to swallow.

I am glad to still be working (even with the stress that comes along with working in a very busy hospital). I'm proud of the hard work my husband and I have done to give our son every opportunity. I'm proud of my husband for completing his Master of Divinity and becoming a chaplain. I am, by no means, ready to give up. Guess I'm just looking for others who have similar struggles. Misery loves company? Lol.

Thanks for reading. I look forward to your responses.

Hi kittysmith

Great topic - somehow I missed this post.

Thank you for sharing what's going on with you.

I think that you have a great attitude, all things considered.

Diminishing eyesight would trigger depression and anxiety for most of us. I think it would be quite scary for me

Looks like you are using adaptive measures to cope with your vision loss, and you're taking care of your mental health by working with a therapist.

We do not have to like the stuff that MS throws our way, in order to accept them.

Talking about our frustrations, disappointments, and fears is not the same as whining or complaining. It's just being real and honest!

My eyesight is ok, but I get frustrated and afraid at times because my ability to stand up and walk is deteriorating.

But, like you, I'm determined to keep trying to do what I can to keep going.

I take each day as it comes and do the best I can, as you are doing.

It's ok to vent now and then, kittysmith. We're all in this together.

Thanks again for sharing.

Take Care

[kittysmith]

thank you

Hi kittysmith

Great topic - somehow I missed this post.

Thank you for sharing what's going on with you.

I think that you have a great attitude, all things considered.

Diminishing eyesight would trigger depression and anxiety for most of us. I think it would be quite scary for me

Looks like you are using adaptive measures to cope with your vision loss, and you're taking care of your mental health by working with a therapist.

We do not have to like the stuff that MS throws our way, in order to accept them.

Talking about our frustrations, disappointments, and fears is not the same as whining or complaining. It's just being real and honest!

My eyesight is ok, but I get frustrated and afraid at times because my ability to stand up and walk is deteriorating.

But, like you, I'm determined to keep trying to do what I can to keep going.

I take each day as it comes and do the best I can, as you are doing.

It's ok to vent now and then, kittysmith. We're all in this together.

Thanks again for sharing.

Take Care

Thank you so much. Some times are harder than others. I have been feeling very down and frustrated. It helps so much to have people to comiserate with. Hope to hear from some more people. I will not ever give up on living the best life I can. Maybe me accepting my diagnosis and living with it isn't as interesting as fighting against it, but that's just not me.

[KoKo]

Some times are harder than others. I have been feeling very down and frustrated. It helps so much to have people to comiserate with.

That's one of the purposes of our MSWorld community ~ to share our experiences and to help pick each other up when going through the more difficult times. Everyone is not having their roughest days all at the same time, thank goodness!

Hope to hear from some more people. I will not ever give up on living the best life I can. Maybe me accepting my diagnosis and living with it isn't as interesting as fighting against it, but that's just not me.

I think you are an inspiration for others going through tough times. It's ok to be honest about how MS is affecting us, how that makes us feel, and how we deal with it.

Your post made me realize how fortunate I am that my vision is ok, at this time.

You said that fighting against the acceptance of your diagnosis isn't you ~ so hopefully you will just keep on being you.

Take Care

[headrift]

I am, by no means, ready to give up. Guess I'm just looking for others who have similar struggles. Misery loves company? Lol.

Thanks for reading. I look forward to your responses.

Hey kitty... it's good that you're ready to address your own problems. If you haven't already, talk to your therapist about grief steps. They're going to dedicate a path along them to me at some point.

Also, don't forget about the chat. There might not always be someone in there, but the main meetings are at 8pm Eastern time. Hope to see you in there.

[kittysmith]

KoKo, thanks so much.

I have tears in my eyes (not just the bad eye that waters all the time, lol). Like I said, after my son and I were diagnosed, I just wanted the best for my child. MS could not be my priority. I have leg spacticity and walk with a cane sometimes. Have a neurogenic bladder and a little vision loss. But, I watched a coworker die of ALS last year. It made MS seem like a blessing. And raising a child with autism has brought its fair share of blessings as well. I could not have asked for a more wonderful child.

Thank you for your kind words. They mean a lot.

[kittysmith]

Thanks

Hey kitty... it's good that you're ready to address your own problems. If you haven't already, talk to your therapist about grief steps. They're going to dedicate a path along them to me at some point.

Also, don't forget about the chat. There might not always be someone in there, but the main meetings are at 8pm Eastern time. Hope to see you in there.

I've definitely addressed my MS. I was on Avonex for 8 years and am now on copaxone. I see my MS doc every 6 months. I try to take care of myself (I could definitely try harder, lol). But, I did not let myself grieve the loss of my health. I have an awesome therapist who is very open and understanding. It was at her suggestion that we begin concentrating on my disease and she mentioned the stages of grief. I kind of have an ace in the hole on that one. My husband is a hospice chaplalin. Haha.

Thanks for your reply. It means so much that we all have eachother, on good and bad days.

[Jenaw35]

Re: Being honest

I really appreciate your post. I understand your frustration. Mine is with dizziness. Some days it's mild and I can go about my business. Some days it restricts me.I also love to read. Sometimes I just buy the audiobooks on my Kindle so I can still get the enjoyment.

This is a new symptom for me. I was dx RRMS in 1999. Only had 2 flares up until last fall.

I put my MS on the back burner because I had children to raise etc.. I think as parents that is just what you do. So it can make it difficult to really concentrate or your needs. Plus you had the added stress of your son dx to deal with.

So I'm trying to find a balance now . Not obsessing or denying this disease but as you said being honest and letting myself accept what happens.

I treat myself to at least once a week of doing something to benefit my mind or body. I usually do acupuncture, massage or counseling and they really help.
Sometimes when people ask how you are doing you say good or fine when you are really losing your mind.

I think it's difficult to be honest about loss. It's easier to focus on someone else then deal with my own issues.
But I'm trying.
I really appreciate having this website to talk to others who can relate.
I also go on chat from time to time which has really helped me . Misery really does love company. Lol

Thanks for listening to my rambling.

[Daisycat]

Kitty you want to know why I never responded to this thread?


Because reading about anyone having issues/new symptoms is scary.

Reading about how it can get (even the small issues terrifies me)

Yes I know I only had double vision... but it’s still terrifying.

[Jules A]

Yes I know I only had double vision... but it’s still terrifying.

I hear ya, me too although this gets easier with time. I still remember over a decade ago a post that scared the pants off me when I as new. The good news is that hasn't happened to me so far, knock wood, so I'm thankful and also aware of the pitfalls. It truly does get easier.

This thread to me wasn't so much about the horrors but dealing with the things life throws our way, with MS or not. Part of your difficulty with acceptance is possibly a delusional mindset that your life would be untouched by pitfalls or tragedy. I don't know anyone who has made it through in such a fashion and would love to revisit your reports of a perfect family tree where everyone lives into their 80s and 90s with no trauma or illnesses and are still driving themselves alone to the Piggly Wiggly.

[Daisycat]

I hear ya, me too although this gets easier with time. I still remember over a decade ago a post that scared the pants off me when I as new. The good news is that hasn't happened to me so far, knock wood, so I'm thankful and also aware of the pitfalls. It truly does get easier.

This thread to me wasn't so much about the horrors but dealing with the things life throws our way, with MS or not. Part of your difficulty with acceptance is possibly a delusional mindset that your life would be untouched by pitfalls or tragedy. I don't know anyone who has made it through in such a fashion and would love to revisit your reports of a perfect family tree where everyone lives into their 80s and 90s with no trauma or illnesses and are still driving themselves alone to the Piggly Wiggly.

I guess since everyone in my family made it to an old age with no health problems I figured I woudl be the same. I didn;t think I would be disabled by age 50.

[Mamabug]

I guess since everyone in my family made it to an old age with no health problems I figured I woudl be the same. I didn;t think I would be disabled by age 50.

Ummm.

You aren't 50.. You aren't disabled. Unless you possess a crystal ball, you don't know that you will be.

[Jules A]

I guess since everyone in my family made it to an old age with no health problems I figured I woudl "be the same. I didn;t think I would be disabled by age 50.

I suspect most of these folks didn't think it would happen either. Darn shame our odds aren't this good with lottery tickets.

"There were nearly 40 million Americans with a disability in 2015, representing 12.6% of the civilian non-institutionalized population, according to the U.S. Census Bureau.Jul 27, 2017"

http://www.pewresearch.org/fact-tank...-disabilities/

[Daisycat]

It’s a greater chance of me being disabled than it is of me going on month long vacations like my dad or going on mile hikes twice a day like my great grandparents did.

[Jules A]

It’s a greater chance of me being disabled than it is of me going on month long vacations like my dad or going on mile hikes twice a day like my great grandparents did.

I happen to feel the same way but neither of us know for sure. The difference is I'm making hay while the sun is shining. I absolutely have no intention of sticking around after I feel my life isn't worth living but that certainly isn't today or likely the near future. I'm continuing to work my butt off, hopefully til my early 60s, will keep taking vacations, going to concerts, conferences and working out for as long as I am blessed to do so.

I wasn't fortunate to have an idealistic childhood. I scratched and clawed for everything I have ever gotten and yet at all phases I felt at peace that I had lived a very full life for my age. Overall it has been a fun, wild and often bumpy ride. I rue the day I was diagnosed with MS but it is what it is.