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MS anchor

I can't find a better metaphor for MS than an anchor. MS affects us in so many different ways but what is common, is that it tends to keep from something. I used to be very optimistic and had a fighting-back attitude. When my legs hurt like hell, I would walk faster until I could jog and until the pain went away. But now I'm just too tired. I love zumba and used to be able to dance for over an hr. Now I can barely stand half an hour. I have always wanted to advance in my job and now I don't even care. Opportunities come up and I don't want to try because it's in my mind that some day I'm going to feel sick and won't be able to do the job as I would want to. I blame it on this silent, invisible disease. I think it's keeping me stuck and it's keeping me down, anchored to this sad place. Anybody feels the same? Anybody has any words of advice?

  1. , I think your description is spot on! I think you really summed up living with MS in one clear visual that pretty much everyone can understand.

    I am so glad you took the time to post here and I know for a fact that so very many of our community members can relate. I do hope they see your comment and chime in here.

    You are definitely not alone when it comes to how MS has changed your life. I do hope you are still able to take part in some of the activities you love or that you have found new ones that, while not replacing what you have lost, allow you to find some joy and express yourself.

    Best, Erin, Team Member.

    1. I hear you, I feel the limitations and it can be exhausting and depressing to keep trying. When I'm feeling those sad moments, I do a few things on a checklist (seriously)...

      1. Review my diet and water intake to make sure they aren't affecting my mood in a bad way (such as too much sugar or fat, not enough fluids)
      2. Consider the weather. When the weather changes, I feel awful. When it's too hot or humid, I'm exhausted. If it's cloudy in the summer, that might also put me in the doldrums.
      3. Check in with myself. I have depression and negative self talk comes out when fatigue strikes. When I start doing it, I sit still and do breathing exercises. Having moments of sadness or depression is normal... being aware of them gives you some agency over them and you can simply say "I see you" to those feelings while deciding you will not allow yourself to dip further into the sadness well.
      4. Look at unfinished projects. Often I feel "less than" because I have unresolved tasks that can collect and feel insurmountable (for work, for home, etc). I usually isolate one and get it done and that usually perks me up.

      It's easy to get stuck and natural to give MS all the credit. Sometimes it's just life, though, and we *are* living in tumultuous times. It could simply be anxiety, poor sleep from dealing with COVID-19, or feelings of grief over an MS diagnosis. It took me about 3.5 years to finally accept my diagnosis and elect to do more than just be my disease. I hope that makes sense. Sometimes you just need time, and sometimes you just need to get up and walk away from the dark side.

      Best wishes, Tamara, community advocate

      1. I agree, and Erin communicated it really well, that your description captures MS very simply and effectively in a single image, that's good because it helps us to explain it better how we're feeling. I think I very much viewed MS this way (and still do now and then), for my first few years especially! This description also greatly relates to the lead suit fatigue that can come with MS, it definitely fits that well also.

        Part of the struggle for me, was learning to be kind to myself and place different expectations on my performance, based on what I'd expect of someone else going through the same. Would I expect someone with MS to "keep up," "do the same," or "do more"? No, absolutely not. So then I started asking myself, "well, then why would I expect myself to?" I didn't have a good answer for that, other than, I was being too hard on myself, needed to be kinder, and that perhaps I wasn't as far along in the grieving process as I would have liked. I realized that we can get over the grieving and be doing well, then experience a relapse or functional loss, and have the grieving process begin all over again. When I realized that, I went and talked to someone about how I was feeling, because realized I was experiencing bit of a depression (being in the grieving process again, being sad, having times of being fed up, or even being in a depression I think is natural in MS from time to time, and that's okay).

        In my case, it took me a while to figure out what was going on and to figure out how to climb out of the rut I was stuck in. I'm sorry you're feeling this way, I can absolutely relate and went through it a few times (I'm now unable to work). The help I mention was counseling that I thought I didn't need it, that I was coping well, but I realized I definitely did need it. I can say that it helped tremendously, as did journaling, blogging and finding new activities (often creative projects and crafts) to do and be excited about. It was definitely a bit of a downscaling of life for me but I realized that there was little I *couldn't* do, and mostly a whole lot of stuff I had to learn to do *differently*. As Tamara said, part of it was rooting out the negative self talk. The turning point for me (I'm still ambulatory but I can't walk very far and need a cane) was learning that I'm not "less" or "broken" I just have different parameters than I used to, and that change is incredibly hard.

        I realized that okay, I can't walk the miles I used to, and maybe I can't drive or cycle anymore (barrel rolling vertigo and numb legs), but I can still walk, just not as far (I got myself a folding tripod stool with telescopic legs, it has a shoulder strap and now when I need a rest I take one! Lol. Then, instead of going home I can sit for a while, cool down, then walk farther. I thought cycling was gone and done for me, then ran into an MSer in a power wheelchair. I mentioned my issue with cycling and she said "why don't you try recumbent cycle? I still use a recumbent every day." And of course I had assumed that if she was in a wheelchair, there'd be no more cycling or walking, which was not at all the case. She still does both, just modified and can't walk that far anymore, necessitating the chair for longer distances. I have no position sense in my legs at all, my brain has no idea where they are, I can't feel anything except the skin (it's like they're hollow, and I have to "tell them" or think about every step to move. I can't walk more than 2 blocks at a time without overheating, but I can recumbent cycle for hours.

        I also started doing some Cognitive Behavior Therapy (CBT)-like practices, to continue to help with the way I was feeling and thinking about MS and myself, to learn to reframe things so I could be kind to myself, and also be more adaptive. After that I started having a slightly different view, that MS just changes my parameters, and that's okay. I wrote down my new parameters and started thinking of how I could live a good life within them. And, I realized that eventually everyone has their parameters changed in life if they live long enough, I was just doing it earlier than most. I'm doing it when I'm still young enough to be flexible to change, when I have the cognitive reserve to do so, and will able to readily adapt. Does it suck that I have to do this? Yes. Is it ideal? Heck no. Am I going to be a pro at the grieving cycle and adaptation when I get older? Yep. Is MS the end of "me" as me? Nope, it gives *me* different parameters. I can work with that, and I can come up with creative solutions on how to be me *within* those parameters. I think eventually folks get there but we can get often there a lot faster with some help and tools. Even simple things like gratitude and self esteem practices helped (10 things in the morning that I'm grateful for, and 10 things in the evening that I'm good at, every single day, trying not to repeat any too soon, until my brain gets very accustomed to recognizing and confirming these things and helps change that negative internal narrative that was helping me stay in the rut I was in). I also had to stop comparing myself what I *used* to be able to do, or would have done, because I don't have those old parameters anymore, I have *new* parameters. I realized it make little sense to compare two entirely different sets of parameters.

        Please hang in there, I can 100% relate. What you're feeling is valid and it takes some time and adjustment. Please be kind to yourself, that was the turning point for me, I hope it can be a turning point for you.

        1. This is so beautifully and wonderfully said, . If would be nice if everyone could reach this point at young as you have and begin to enjoy life more fully again. Thanks so much for sharing your insight. Best of all wishes! - Lori (Team Member)

      2. TiltInMyBrain - I loved your response. It describes what we have to go through. But, it seems like there are roadblock too much and it becomes harder to climb out of that rut.

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