Here’s more about the “Real Deal of MS” and me being real. I've been VERY frustrated lately and upset with my recovery.
I could use some encouragement or prayers. This recovery from my severe relapse in March stinks and has not been going the way I want it to at times even though I’ve become stronger last 2 months and I’m VERY grateful I can still walk, move my arms, speak, see, etc.
The frustration now is trying to exercise. In my mind I want to do a lot, but my body won’t follow. And I just completed two months of physical therapy at home.
I learned today though when I was in the pool doing a few “slow” frog swims while dealing with lots of pain and stiffness that I'm being too hard on myself. I’ve always set “high” expectations for myself and perhaps now, I need to set them much lower to consider starting something again or learning something new. I can only do what my body is able to do.
I've always been an “overachiever" and now I’m learning how to pace myself after each activity I do daily from my Home therapies. Pacing like this and being an Overachiever do NOT mix! I believe I’m supposed to learn all this for a reason.
When I say activity as many of you can relate-I mean anything mental or physical activity and doing it for 5, 10, 15 or 20 minutes-like talking to family or a friend, writing, reading, going on FB, editing my pics, feeding my birds outside and cleaning bowls, taking a shower, cooking, whatever, etc. Sometimes it’s 5 minutes for me, then I need to rest. I have to rest after each thing. It sucks, but I guess it is what it is. Sometimes my body and mind bounce back soon after rest and other times which is often I’m too fatigued and takes hours or rest of the day. I'm slowly getting the hang of this pacing thing, but I’m surely not wired this way. This is one of the hardest things I had to do in my life dealing with MS and especially this recovery now. The most challenging and rewarding was becoming a new Mom 15 years ago, lol.
Well, now I’ve got my own marathon for life. I'm glad I ran marathons before getting MS 8 years ago to remember how I trained for it in baby steps. My running club Coach taught us first: run 5 or 10 minutes-whatever you can do, then walk a minute, run again 5 mins, then walk a minute, for about 15-20 minutes. Some people could run 3 minutes, then walk a minute, etc. Work up from there in a few weeks, then increase run time, etc. 8 months later in year 2000, I completed the Los Angeles Marathon-26.2 miles and many 10k’s and 1/2 marathons afterwards. 😝
I don’t run anymore and that’s ok. Perhaps now, this is the mentality I need moving forward is to only do what my body is able to. Thanks for listening today!!
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nicoly3467
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Ty for sharing the real! I’m sorry you are having a hard time with slow progress and the frustrations of new limitations. I don’t always follow my own advice, to my own detriment, but I would tell you to talk to yourself with the same kindness that you would your own child. Everyone needs a cheerleader, and unfortunately with invisible diseases we have to become our own a lot of the time. You say your expectations need to be lowered, but it takes a lot to climb out of quicksand while wearing a lead suit.
You have been given the strength to deal with this. Most of the situations that entangle your mind are not today’s concerns, you have borrowed them from the tomorrow. The problem will be lifted out of today and deposited in the future, where it is veiled from your eyes. In its place you will be given peace which flows freely from His presence. 🤗 🙏
sounds like you were very busy when you were younger and so was most of us ...now it is a slow pace till you get the hang of it or just have to try doing it a different way that is what i have found ...good luck don't give up just try going at a slower pace or just a few things one day and more for the next day to do...don't have to do all in one day like when we were younger and before getting MS...take care and enjoy life ...enjoy the birds that are enjoying your feeding them ....
i hear you!nothing lasts forever as sad as that is,i think it is up to us,to figure out what else can I do?memories are forever...what a running accomplishment i couldn't never have done what you did on my best day!
I am right with you. Was doing too much for me @ the time & instead of pacing, I thought I’ll just take time off to regroup . Ha! Ha! That WAS NOT the smartest idea. Now I need a fire under my @$$!!I actually had my first fall Tuesday 😳My 15 yr old has started getting ready for next hockey season working out 2-3 days a week @ home. Think I should join him or at least use that as a motivator to stay on a schedule 🧘♀️
One of the very hardest things i have ever had to do is to accept the limitations of what this disease has dealt me.. It is rough. I had a bad relapse in February and I didn't bounce back like I usually do either. An MRI in late March showed new lesions in my brain and cervical spine. I feel your pain and frustration. I can no longer stand in my kitchen to cook the way i want to and also must do so in spurts. I do what i can as I feel I am able to. It's hard to accept but to avoid sinking deeper into the darkness of depression it's something that needs to be confronted, dealt with and accepted.. That's not to say that we have to give up.. but we cannot let the frustration of not being able to do the things we were able to before our relapses get to us TODAY.. as we work toward regaining our strength and co-ordination, maybe tomorrow, or next week.. but for TODAY this is what I CAN accomplish and go with that.. One day at a time.. one step forward and the rest will come.. If i keep looking I run into walls because I am not paying attention to where I am going.. that hurts.. LOL
Thank you for sharing. I can totally relate to what you said about MSand facing depression. I learned that too. I’ve had some pretty depressing days at times with this recovery. And it’s all based on what I want to do and what my body is able to do now, which needs to be more modified. If I push myself too much with exercise or anything, then I pay the price by lying down next two days with too much pain and suffering worse fatigue. I’m working on a healthy balance and this will take time. There’s a lot of tweaking going on, Lol.
Yes, it does take time and again, until you accept the limitations, whatever they are, TODAY, you are going to remain frustrated and angry. However, just because those limitations are there TODAY does not mean they will still be there tomorrow necessarily.. we all have moment and days when things are better or worse.. we absolutely MUST give ourselves a break and take things one day at a time. Recovering from a bad relapse is hard work. It's gonna take a while.. If you walk 50 more steps today than you did yesterday, that's great progress! Do not look down on progress no matter how small it might seem today.. tomorrow that might feel like a mountain ya know? One.Day.At.A.Time
I'm an over achiever myself and was diagnosed 9 years ago and still haven't accepted it. I keep trying to do things that I feel I should be able too and it never works and hit the ground. I am always taking care of bruises and cuts.I have been to several therapist over the past several years and they have not had enough experience with MS to help. You guys help me more.
My neurological group has been fortunate enough to have one of their younger neurologist that has received a fellowship to just work with MS patients on their psychological issues. She does not treat the actual MS just the referral for the psychology therapy.
I am also working with my doctor to be able to get Sunosi covered by insurance for MS to help with the fatigue. I'll keep everyone updated as things progress.
One of the hardest things to do is to learn when to shut down the urge to keep pushing harder toward a goal. I'm currently trying to get through the painful consequence of pushing too hard. My podiatrist explained to me why I've developed a really bad case of plantar faciitis: In 2018, I'd spent 5 months in hospitals either in an alarm-armed bed or a wheelchair. I'd not spent any time on my feet. When I got out of the last hospital I'd been sent to, I had a physical therapist who came to my home for six weeks. He finally reminded my legs about how to worked. He graduated me at 6 weeks by announcing we would be walking around the park across the street from my house. I wasn't allowed to use my walker, and he'd be taking my cane along, but only for an emergency. I accomplished that challenge and I was hooked! I walked around the park every morning, greeting my four-legged neighbors (who were often friendlier than the two-legged ones). I met a neighbor who was a breast cancer survivor. She told me 7 laps around the park equaled 3 miles. I found out the clinic close to my house where my primary care practiced was only 3 miles from my house. So I then had a new goal! I was going to walk to my primary care's next appointment! I accomplished this, too!
However, when I went to see my neurologist a couple of weeks later, I was using my cane. My neurologist asked me why. I told him my heel was hurting so bad, if I stepped on it I'd yowl, and jump off of it, losing my balance. Thus, after his exam, he diagnosed plantar faciitis, and demonstrated stretches to help with the pain.
Well, it is 3 years later, my podiatrists is sending me to a therapist to work on my plantar faciitis because the cartoon shots are no longer working. And he explained what happened. I'd not been on my feet for 5 months in 2018, and then I over did it when I finally was back on my feet. The muscles, ligaments and bones in my foot just couldn't handle the sudden stress!
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