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Switching Gears!
Daily living with a chronic disease, especially when it's onset was sudden can throw even those experienced with great change into a whirlwind of limitation, frustration, aggrevation, and seemingly helplessness and hopelessness.
Helpless to take care of one's self, the family, loved ones, pets, the house, and work.
How are you getting by? Are you learning to switch gears slowly? Learning your limitations and accepting them along the way? Or, are you giving er' he ll all the way - throwing the gear shift into overdrive, come all or nothing!?
I'll share I've done a bit of each. During my 1st attack it was all I could do to get through the minutes of the day. Then intermittenly going all out, caring less about consequences.
And, now 5 years in, I practice a balancing act - though you all know how that "see-saw" goes.......it is hard to stay in the middle at times when strong pressures pull you up or down at a moments notice.
Helpless to take care of one's self, the family, loved ones, pets, the house, and work.
How are you getting by? Are you learning to switch gears slowly? Learning your limitations and accepting them along the way? Or, are you giving er' he ll all the way - throwing the gear shift into overdrive, come all or nothing!?
I'll share I've done a bit of each. During my 1st attack it was all I could do to get through the minutes of the day. Then intermittenly going all out, caring less about consequences.
And, now 5 years in, I practice a balancing act - though you all know how that "see-saw" goes.......it is hard to stay in the middle at times when strong pressures pull you up or down at a moments notice.
Great topic.. I will add to this later but there are great starts here. I love everyone's positive nature and reworking what works for each of us. I do feel it is important to start out being kind to ourselves first and foremost.
The info and experiences you all have provided here are so helpful!
I see one main theme throughout them all, and that is "keep going," either by way of a schedule, knowing your MS, "not" planning on a worse case scenario, but being "prepared" for it (love the go back), mastering use of resources, i.e., outside help, shopping carts, etc.
Adjusting your lifestyle if you have to - thank you so much for sharing.
I see one main theme throughout them all, and that is "keep going," either by way of a schedule, knowing your MS, "not" planning on a worse case scenario, but being "prepared" for it (love the go back), mastering use of resources, i.e., outside help, shopping carts, etc.
Adjusting your lifestyle if you have to - thank you so much for sharing.
I am fortunate in that I don't have any physical limitations (yet). Being mindful of the yet is what keeps me from taking too much on in any capacity.
Heck, it's enough taking care of a house, children, husband, pets, old/sick relatives and myself, I don't need to say "yes" to everyone that wants me to help out with something at school, church, etc. Not that I don't help out elsewhere, it's just wisely choosing what to involve myself in and what to let go.
Too often I do lose myself in the mix of my to do list. I am trying to change that. It seems it's something that I have to continually rededicate myself to.
The one thing that I seem to have mastered well is how far I can still push myself physically w/o pushing myself too far. Physical exercise helps me tremendously mentally and physically. If I gave myself permission not to get myself up in the morning for my walks and stretches, I could see how that would negatively effect me in the long run.
Even when I was in relapse, I sometimes pushed myself to get into the pool knowing that my body would feel so much better when I got out. When you have MS, keeping your body feeling good is what we all strive for.
What I haven't mastered yet is managing my stress. I try, and and to a degree I have been successful, but I have a long way to go. The exercise helps with this somewhat, but turning off worried thoughts in my head and negatively reacting to unexpected events, are challenges that continually elude me.
I remain a work in progress.
Julie
Heck, it's enough taking care of a house, children, husband, pets, old/sick relatives and myself, I don't need to say "yes" to everyone that wants me to help out with something at school, church, etc. Not that I don't help out elsewhere, it's just wisely choosing what to involve myself in and what to let go.
Too often I do lose myself in the mix of my to do list. I am trying to change that. It seems it's something that I have to continually rededicate myself to.
The one thing that I seem to have mastered well is how far I can still push myself physically w/o pushing myself too far. Physical exercise helps me tremendously mentally and physically. If I gave myself permission not to get myself up in the morning for my walks and stretches, I could see how that would negatively effect me in the long run.
Even when I was in relapse, I sometimes pushed myself to get into the pool knowing that my body would feel so much better when I got out. When you have MS, keeping your body feeling good is what we all strive for.
What I haven't mastered yet is managing my stress. I try, and and to a degree I have been successful, but I have a long way to go. The exercise helps with this somewhat, but turning off worried thoughts in my head and negatively reacting to unexpected events, are challenges that continually elude me.
I remain a work in progress.
Julie
I'm still figuring out how to manage. I can still do some things- unless I'm in a flare. My husband recently decided I need more help than he can manage- although he does still take on most of our daily tasks. We have hired someone to come in on Tuesdays for a couple of hours. I could really use someone for about an hour and a half every day- but that's just not in the budget. The woman we hired is nice, but we are having a hard time figuring out how to direct her in a way that is both kind- and will help her to finish tasks in a timely manner. What I'm learning is that the concept of clean is different from one person to another. I also need help with other things besides cleaning, but this is at least a good start.
Tammy
Tammy
It sounds like you've learned a lot. Thank you for sharing your tips about managing this. I need to get a "go bag" packed up too. Such a good idea.
Tammy
Tammy
Being recently dx'd I am still learning how to deal with this. I have some physical limitations due to foot drop so walking is always an adventure. I have learned to compensate in small ways. Shop in stores where there are carts, time my errand running around breaks - lunch, a cup of coffee etc. Always have my kindle charged and with me should I need a break. I can see how exhausted I get when I push too much. At home I clean a floor of the house and take a break then go to the 2nd. My Monday-Friday job is not too strenuous so that part is okay. I now go to PT 3x's a week so get home late which is taking its toll but pt is working so I push thru that. My weekend jobs are on my feet so that is a little tougher. I limit errand running after work and try to take a break if I have to go to more than 2 places after work. Little adjustments every day seem to be working,
I too am not going to let the thought of a relapse rule my life but it is in the back of my head all the time. Did just plan a vacation for April. And friends asked well how are you going to do that.? How are you going to handle airports walking etc? Told them gonna get there - get a ride on one of those nifty carts get on a plane and have fun! LOL!
I too am not going to let the thought of a relapse rule my life but it is in the back of my head all the time. Did just plan a vacation for April. And friends asked well how are you going to do that.? How are you going to handle airports walking etc? Told them gonna get there - get a ride on one of those nifty carts get on a plane and have fun! LOL!
I try not to get too far ahead of myself, focusing on the day to day. As I'm still off work I have to make an effort to create some structure for myself. Each day I try to accomplish something however small: clean the bathooms, organize old photos, bake some muffins, organize computer files, etc.
A friend's mother is turning 60 in March and I offered to put together a video/slideshow to play at her party, from old family photos which they were able to sneak out of her house. I can only do a little every day, scanning and adjusting the pics and putting it together, but it's a task I enjoy and good for me to have something I committed to doing for someone else, and will be satisfying when I have the final product.
Unlike when I was first dx'ed in 2007 and off work for nearly a year, I am not as fixated on my MS. Nor as panicked. I continue to read articles and try to keep up on the research, as much as my little pea brain can absorb, but I'm not obsessed like I used to be.
I don't live in fear of the next relapse, partly because I'm focused on recovering from the last one. And partly because it's pointless. Worrying or not worrying isn't going to make it happen any sooner or later, what will be will be so I just make sure to be compliant with my Copaxone and supplements, eat well, and exercise even if all I can manage is some basic strwetching and a few simple yoga poses. I do try to do treadmill a few times a week to get some cardio, however light it might be. On milder days I've taken my dog on short walks but it's still pretty treacherous out there on the icy sidewalks so treadmill is safer.
Although I don't worry about my next relapse, I am more prepared than I initially was. I have an overnight bag always packed and ready to go, kind of like I guess one would have if they were expecting a baby. I have a change of comfortable clothes (yoga pants, t-shirt, sweater, PJs, socks, undies, slippers), all the basic toiletries, a USB flash drive with copies of all my medical reports and contacts, IPod, chargers, snacks and cash. I keep my Blackberry fully charged as well and have all my important contacts including doctors, MRI clinic, pharmacy, etc. up to date.
When I was first dx'ed we had driven the nearly 5 hour drive to see an on-call neuro, planning to return home that same day. Little did I know I would be immediately sent to hospital for LP and then have to stay two more nights to get my LP results and get started on IVSM. I was completely unprepared, I had nothing with me for an overnight stay, my phone wasn't charged and my IPod quickly died. Thinking I would be admitted as was intended, I told my husband not to bother waiting around, to drive home that evening to look after our dogs. They couldn't get me a bed in Neurology or even in the ER so I was put up in a residence adjacent to the hospital. At that late hour nothign was open and I had vending machine chips for supper. Didn't even have a magazine to read. Anyway, that set of circumstances won't happen again but it did teach me to be more prepared. Even if I only had to go to the local hospital, having what I may need organized and ready to go will make it easier for me or my husband should the need arise.
A friend's mother is turning 60 in March and I offered to put together a video/slideshow to play at her party, from old family photos which they were able to sneak out of her house. I can only do a little every day, scanning and adjusting the pics and putting it together, but it's a task I enjoy and good for me to have something I committed to doing for someone else, and will be satisfying when I have the final product.
Unlike when I was first dx'ed in 2007 and off work for nearly a year, I am not as fixated on my MS. Nor as panicked. I continue to read articles and try to keep up on the research, as much as my little pea brain can absorb, but I'm not obsessed like I used to be.
I don't live in fear of the next relapse, partly because I'm focused on recovering from the last one. And partly because it's pointless. Worrying or not worrying isn't going to make it happen any sooner or later, what will be will be so I just make sure to be compliant with my Copaxone and supplements, eat well, and exercise even if all I can manage is some basic strwetching and a few simple yoga poses. I do try to do treadmill a few times a week to get some cardio, however light it might be. On milder days I've taken my dog on short walks but it's still pretty treacherous out there on the icy sidewalks so treadmill is safer.
Although I don't worry about my next relapse, I am more prepared than I initially was. I have an overnight bag always packed and ready to go, kind of like I guess one would have if they were expecting a baby. I have a change of comfortable clothes (yoga pants, t-shirt, sweater, PJs, socks, undies, slippers), all the basic toiletries, a USB flash drive with copies of all my medical reports and contacts, IPod, chargers, snacks and cash. I keep my Blackberry fully charged as well and have all my important contacts including doctors, MRI clinic, pharmacy, etc. up to date.
When I was first dx'ed we had driven the nearly 5 hour drive to see an on-call neuro, planning to return home that same day. Little did I know I would be immediately sent to hospital for LP and then have to stay two more nights to get my LP results and get started on IVSM. I was completely unprepared, I had nothing with me for an overnight stay, my phone wasn't charged and my IPod quickly died. Thinking I would be admitted as was intended, I told my husband not to bother waiting around, to drive home that evening to look after our dogs. They couldn't get me a bed in Neurology or even in the ER so I was put up in a residence adjacent to the hospital. At that late hour nothign was open and I had vending machine chips for supper. Didn't even have a magazine to read. Anyway, that set of circumstances won't happen again but it did teach me to be more prepared. Even if I only had to go to the local hospital, having what I may need organized and ready to go will make it easier for me or my husband should the need arise.
I'm fortunate in that my day to day limitations are insignificant. Yes, my legs never feel quite right and taking a pee can be a bit of an adventure, but I'm not forced to rethink getting dressed, getting to work, food shopping, pet care etc.
I have decided that "managing" the possibility of a relapse makes little sense for me. I plan my life under the assumption that I'm OK. I recently booked to vacations. I'm not going to stop my life because I might relapse. The one concession I did make to my MS was buying travel insurance for the first time in my life :-)
Kyle
I have decided that "managing" the possibility of a relapse makes little sense for me. I plan my life under the assumption that I'm OK. I recently booked to vacations. I'm not going to stop my life because I might relapse. The one concession I did make to my MS was buying travel insurance for the first time in my life :-)
Kyle
I has taken me years to know what is MS and what is not which is important for me. The hardest thing is pacing myself. I do too much and pay for it. I have had to learn to listen to my body and trust myself above all those around me including my Doctors. They are looking at my outsides not living with my MS. Some understand my MS but can't do much.
Other professionals are downright ignorant and some have been Neurologist, not MS Specialists. Self Advocacy is important. If I need something I have to push for it is a quagmire of a medical system.
Self care is important. I need to stick to a schedule. I get up early, bathe, make my bed, eat breakfast, take Grady for a training walk, and work. I ride horses once a week. I have developed a good diet allowing for MS gut problems. I work on stress reduction and go to counseling. Therapy is where I can unload what I do not want to on my family and I learn new skills for dealing with my spouse.
At first this thing was a nightmare I hoped I would wake up from. Now it is a daily acceptance of what I can do or not do.
Alex
Other professionals are downright ignorant and some have been Neurologist, not MS Specialists. Self Advocacy is important. If I need something I have to push for it is a quagmire of a medical system.
Self care is important. I need to stick to a schedule. I get up early, bathe, make my bed, eat breakfast, take Grady for a training walk, and work. I ride horses once a week. I have developed a good diet allowing for MS gut problems. I work on stress reduction and go to counseling. Therapy is where I can unload what I do not want to on my family and I learn new skills for dealing with my spouse.
At first this thing was a nightmare I hoped I would wake up from. Now it is a daily acceptance of what I can do or not do.
Alex
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