How do I deal emotionally with MS progression?

[Curious1]

I’m almost 30 yrs with MS. My abilities have decreased over time, which is normal, I know. How do I deal with the loss of the many things I can no longer do? I try to look at the positive and focus on what I CAN do, but lately that doesn’t seem to help. I feel like I am grieving my old self. Any tips to get me out of this funk??

[Marco]

Thank you for sharing your circumstances so others can learn from your honesty. Dealing with continuous loss is one of the more difficult aspects of MS. I'm sorry that you are struggling - grieving - with what has been lost. Grieving is 100% percent normal so don't beat yourself up over it.

I'm a big believer in garbage in/garbage out so I try not to ingest too much negativity. I even limit my exposure to MSWorld because there's a lot of suffering here and I am easily overwhelmed. I'm not as strong as I once was and that's okay. I know my limits and have boundaries in place to ensure I stay in a safe space (mentally/emotionally/physically and spiritually). I do post on new treatments and trials because that spurns hope. You're young enough that you should see a cure in your lifetime. Hopefully, restoration will be possible, but I believe MS progression will eventually be stopped for the vast majority of patients.

There are a number of things that I use to combat the depression:

• I am under the care of a psychiatrist and on an anti-depressant
• I also see a counselor to process the grief and other life challenges
• I occasionally treat myself to either an acupuncture or massage session
• I walk daily, without fail... this is a non-negotiable for me
• I have a healthy diet nearly 100% free of processed foods, sugar, soy, gluten, etc.
• I drink a mess load of water, nothing caffeinated, no sugary drinks... water!
• I turn off the tv and listen to soothing/relaxing music
• I have excellent sleep hygiene
• I have a weekly dinner with friends
• I attend church and volunteer what skills and talents remain
• Find a creative outlet even if it's jigsaw puzzles or adult coloring
• Journaling has helped a lot of people, but I haven't been able to get into it

Hmmm, that might be about it. See for me there isn't one thing that helps me, but a large number of things that collectively make a difference. I still have down days (I have comorbidities that aren't pleasant), but I am "outgrowing" grief by putting my time into other activities. All any of us can do is be the best version of ourselves in the moment.

I hope something above written above is helpful. I also hope others chime in with their pearls of wisdom.

I wish you well ...

[oceanpride]

I can understand completely. I am going through the same thing. But I am grateful at least for the fact that I did do lots of stuff and I have those memories and experiences to reflect on. I had an MS friend who just passed at the age of 74. She had been bed bound for the last 10 years. She was upbeat and never complained. She was an inspiration to me. What a very strong lady. She showed me how to do it. I’m not sure I have her strength but she set an example. I will keep trying for everyone’s sake. I think it’s all right to reach out here amongst people that get it.
All the best !

[502E79]

....I feel like I am grieving my old self. Any tips to get me out of this funk?

Hi Curious1,

First: I feel like I am grieving my old self.

Grief is cycular but you cannot live there. Marco rightly says try not to ingest too much negativity. Live now, not in the past and don't turn good memories into grief... they are memories and remain with you. Good memories always outlast the bad.

Embrace adversity as readily as prosperity. MS and all that goes with it is certainly adversity. It's yours, it affords you the strength necessary to seek what you really require. My guess is that you already have what is needed but haven't drawn on it. You choose daily how you live your life. Again, I'm with Marco.... Throw out the trash!

Second: Any tips to get me out of this funk?

Don't feel bad about following all the suggestions. I understand them, but only some are me. Just as everyones MS is different, so too, everyone here is different. Lastly...

Oceanpride says 'I will keep trying for everyone’s sake'. Marco states 'I hope something written above is helpful'. Thinking about others! Should help get anyone out of any funk.

[NoraS]

This won't work for everyone, for obvious reasons, but as a single adult I've learned to focus on what makes me happy every day. As in, if I don't want to do it, I just don't.* Need to take out the trash? I ache, I can barely walk, it can wait for next week. Don't feel like going to bed at a reasonable time? Then I stay up and play computer games or watch reruns on TV. Don't feel like cooking? Heat a can of soup.

I've gone back to old hobbies that I enjoy and get as much fresh air as I can, even though that means just sitting on the porch in the shade. I've stopped letting myself be ruled by my old routines and other people's expectations. I never set the alarm. I frequently don't answer the phone. There are days when I feel just fine but don't want to get dressed. So I don't. Days when the most I accomplish is sorting my stuffed animals by color or sharing book reviews with my dog. I worked as long as I could, I raised my family, and I can't call it selfish to finally take time for myself. Focusing on ME and what makes me happy at the moment has made a world of difference in my outlook on life.

*Sadly, this does not include not paying bills or taxes or avoiding family holidays!