Warning - this is going to be scattered and rambling but I feel the need to share. This is for those who are new to all of this and for those who can relate and add input.
It was interesting going back through all of my threads, seeing where I've come from, my state of mind, etc. in various times during this MS journey. I think I noticed something was off about 4 1/2 years ago, or was it 5 1/2 years? I cannot remember. It's been a rollercoaster ride ever since. I am not officially diagnosed. All of the doctors (PC, Neurologist and MS Specialist) say it's MS however the spots on my scans are not "MS Specific" [everything else is though] ... so they are waiting for those to show up to officially label it "MS".
My doctors visits are sketchy. I go and then wait over a year or two before going again. I try to stay away. I'm still not sure if I'd want to take DMDs anyway so what's the point? I could have taken all sorts of other drugs by now but I am afraid of them. What is their long-term effect? They might offer relief RIGHT NOW but what might they cause later? I'm not totally closed to DMDs or other meds (God knows I take an ibuprofen sometimes for a headache!) but I just do as much as I can to stay away from those things and live as naturally as possible.
About 3 1/2 or 4 1/2 years ago my aunt was also diagnosed with MS. My mom has a few autoimmune diseases too.
My symptoms never stop. They are always there. Sometimes they are a lot worse (probably because of stress or over-doing it) and sometimes there is a new thing that pops its head up for a while and then settles down but the main symptoms are always there. I used to be so physically active and capable. I used to run ... and enjoy it. I used to hike all sorts of difficult trails with my family (and trail run, my favorite). I used to go all day long without stopping. I am not even a tenth of the person I used to be, and it took a few months to bring me down to that state.
When this first started I thought I was really bad. Now I know I was wrong. I was just in shock. It only gets worse.
My level of disability gets higher and higher. Meaning, it is steadily progressing (that sounds so positive, right?!). My 'new normal' seems to be ever changing in the wrong direction. I look back and remember how I used to be able to go shopping in the city (an hour away), drive there myself, do all the running around and shopping I needed to do (3-4 hours worth), drive myself back home, cook supper, clean up, and do everything else I needed to do around the house and then go to bed, tired but very functional. Now I cannot drive by myself and I cannot do those big shopping trips alone. I need someone to drive, someone to help me think. About 2 hours into it I'm pretty much worthless. My speech becomes slurred. I cannot hold a thought. I drag my right leg around. Etc.
Now I have to choose: use the electric scooter cart thingy and save some energy to be able to think a little longer, or try to walk (holding on to the side of the cart of course), get a little bit of exercise, and lose the ability to function sooner. I have to choose: how am I going to spend my energy? I have to seriously consider these things because if I don't, it's so much more of a MesS.
I used to be able to spell good. To speak good (I was tops in my speech class!). To multi-task. I was an accountant for a major construction company ... and REALLY good at it. WOW, was that ME? I can hardly believe it now. I used to be able to type super fast (81 wpm without mistakes if I remember right?). There are so many things I USED to do. Not anymore. I hear of others with MS that have jobs and I just cannot believe it. HOW can they work? I know everyone has MS differently but I just could not imagine being able to work. And I see others posting about marathons. Really? how can you have MS and run marathons?? I have a hard time walking a straight line, let alone running a marathon!!! But good for you - that must be a real blessing to be able to be so active. Be thankful for what you can do now because there might come a time when all you can do is sit in a chair and think about what you used to be able to do (which, by the way, is not healthy!! I think it's ok to remember the past but we need to let it go and move on).
At home I used to be a superwoman. Now I am thankful to just get a few things done. I work a little (very slowly so as to not get too exhausted too quickly), take a break, work a little, take a break, work a little, etc. Naps are essential, sometimes two a day. Sometimes all I can do is get up and sit in the chair.
The only thing I CAN control is what I eat, and I think that's why many of us try all sorts of diets with the hopes that we'll find SOMETHING that will help us. Vegan? Vegetarian? Paleo? Whals? Gluten Free? AIP? GAPS? There are so many choices, and they ALL say they are THE BEST DIET for folks with MS. Some really seem to make a difference, but I cannot help but wonder … HOW did the person eat BEFORE going on that diet? Those who are transitioning off the “SAD” (standard american diet) into ANY of the diets I mentioned will ALWAYS feel better because they are eliminating so much junk from their diets and adding in a lot of good stuff. But what about someone like me? I've eaten super healthy for many years prior to struggling with MS. The only difference I noticed was eating gluten free seemed to help the bloating I've always had ... but no help with MS.
Diet IS important. We MUST eat healthy and stay away from the junk (in general). If nothing else, a healthy diet will prevent other things from messing up in our bodies!!! So what is 'healthy'? I believe it's lots of vegetables of all kinds, some fruits, clean meat (biblically clean, non-GMO, organic, pastured, etc.), some grains, dairy and legumes but do not make them the main staple. Veg is the star of the show. Honey instead of sugar. But don't be afraid of eating more like a 'normal' person when out once in a while. OH YES ... and DO NOT overeat!!! I believe that is one of the biggest problems people have, myself included. I am 108lbs, 5'4" and not really active ... I DO NOT NEED TWO SERVINGS OF SUPPER!! Our portion size must fit our lifestyle. Too much food in your digestive system causes all sorts of problems. I could be overweight. I gain weight very quickly. All of the women in my family gain weight quickly too and many of them are obese. I do not want to be overweight. I DO have control of that.
A big revelation I have had recently:
***Sometimes I think I am feeling better, but then I realize I'm not really feeling better, I'm just getting better at MANAGING my symptoms*** (like going slower and taking a lot of breaks as I mentioned before). When I first started on this journey I would push myself to try and be as 'normal' as possible but that would only cause me to crash big time and/or have a pseudo exacerbation. We MUST adjust our lifestyles to fit our abilities. Gone are the days of being like everyone else. We must figure out what WE are capable of and work to the best or OUR abilities and not compare ourselves to others OR to how we used to be. We are who we are RIGHT NOW. Let's live our lives RIGHT NOW the best we can. Each breath we have is precious and we must not squander our time sitting around feeling sorry for ourselves. This may sound silly but if I cannot do anything else but sit I will go sit outside with my chickens, turkeys and dog. At least then I can enjoy some fresh air and nature ... and the funny antics of the chickens and turkeys. The longer I sit inside the more lazy and depressed I feel.
I visit the elderly and others in need. It's always a blessing and encouragement to ME. If this is not a regular part of your week, I strongly suggest you MAKE IT SO. There are so many that are much worse off than I am. Would I want to be sitting in the same room every day, day after day, with no visitors? No. So I go visit them and we brighten each others days
it's a win-win situation.
I exercise to the best of my ability, even if it's a pathetic small movement on my rebounder. At least my lymph system is moving and pumping through my body a little.
I used to have a lot of responsibilities. Now I only have a few. We do what we can. Too many responsibilities causes stress and stress causes exacerbations.
Ok, those are my random thoughts. I'm not sure if they are worth reading but if you made it all the way to the end then maybe they were? I'm sure if I sat here long enough I could think of so many things to say but that's all I have time for.
It was interesting going back through all of my threads, seeing where I've come from, my state of mind, etc. in various times during this MS journey. I think I noticed something was off about 4 1/2 years ago, or was it 5 1/2 years? I cannot remember. It's been a rollercoaster ride ever since. I am not officially diagnosed. All of the doctors (PC, Neurologist and MS Specialist) say it's MS however the spots on my scans are not "MS Specific" [everything else is though] ... so they are waiting for those to show up to officially label it "MS".
My doctors visits are sketchy. I go and then wait over a year or two before going again. I try to stay away. I'm still not sure if I'd want to take DMDs anyway so what's the point? I could have taken all sorts of other drugs by now but I am afraid of them. What is their long-term effect? They might offer relief RIGHT NOW but what might they cause later? I'm not totally closed to DMDs or other meds (God knows I take an ibuprofen sometimes for a headache!) but I just do as much as I can to stay away from those things and live as naturally as possible.
About 3 1/2 or 4 1/2 years ago my aunt was also diagnosed with MS. My mom has a few autoimmune diseases too.
My symptoms never stop. They are always there. Sometimes they are a lot worse (probably because of stress or over-doing it) and sometimes there is a new thing that pops its head up for a while and then settles down but the main symptoms are always there. I used to be so physically active and capable. I used to run ... and enjoy it. I used to hike all sorts of difficult trails with my family (and trail run, my favorite). I used to go all day long without stopping. I am not even a tenth of the person I used to be, and it took a few months to bring me down to that state.
When this first started I thought I was really bad. Now I know I was wrong. I was just in shock. It only gets worse.
My level of disability gets higher and higher. Meaning, it is steadily progressing (that sounds so positive, right?!). My 'new normal' seems to be ever changing in the wrong direction. I look back and remember how I used to be able to go shopping in the city (an hour away), drive there myself, do all the running around and shopping I needed to do (3-4 hours worth), drive myself back home, cook supper, clean up, and do everything else I needed to do around the house and then go to bed, tired but very functional. Now I cannot drive by myself and I cannot do those big shopping trips alone. I need someone to drive, someone to help me think. About 2 hours into it I'm pretty much worthless. My speech becomes slurred. I cannot hold a thought. I drag my right leg around. Etc.
Now I have to choose: use the electric scooter cart thingy and save some energy to be able to think a little longer, or try to walk (holding on to the side of the cart of course), get a little bit of exercise, and lose the ability to function sooner. I have to choose: how am I going to spend my energy? I have to seriously consider these things because if I don't, it's so much more of a MesS.
I used to be able to spell good. To speak good (I was tops in my speech class!). To multi-task. I was an accountant for a major construction company ... and REALLY good at it. WOW, was that ME? I can hardly believe it now. I used to be able to type super fast (81 wpm without mistakes if I remember right?). There are so many things I USED to do. Not anymore. I hear of others with MS that have jobs and I just cannot believe it. HOW can they work? I know everyone has MS differently but I just could not imagine being able to work. And I see others posting about marathons. Really? how can you have MS and run marathons?? I have a hard time walking a straight line, let alone running a marathon!!! But good for you - that must be a real blessing to be able to be so active. Be thankful for what you can do now because there might come a time when all you can do is sit in a chair and think about what you used to be able to do (which, by the way, is not healthy!! I think it's ok to remember the past but we need to let it go and move on).
At home I used to be a superwoman. Now I am thankful to just get a few things done. I work a little (very slowly so as to not get too exhausted too quickly), take a break, work a little, take a break, work a little, etc. Naps are essential, sometimes two a day. Sometimes all I can do is get up and sit in the chair.
The only thing I CAN control is what I eat, and I think that's why many of us try all sorts of diets with the hopes that we'll find SOMETHING that will help us. Vegan? Vegetarian? Paleo? Whals? Gluten Free? AIP? GAPS? There are so many choices, and they ALL say they are THE BEST DIET for folks with MS. Some really seem to make a difference, but I cannot help but wonder … HOW did the person eat BEFORE going on that diet? Those who are transitioning off the “SAD” (standard american diet) into ANY of the diets I mentioned will ALWAYS feel better because they are eliminating so much junk from their diets and adding in a lot of good stuff. But what about someone like me? I've eaten super healthy for many years prior to struggling with MS. The only difference I noticed was eating gluten free seemed to help the bloating I've always had ... but no help with MS.
Diet IS important. We MUST eat healthy and stay away from the junk (in general). If nothing else, a healthy diet will prevent other things from messing up in our bodies!!! So what is 'healthy'? I believe it's lots of vegetables of all kinds, some fruits, clean meat (biblically clean, non-GMO, organic, pastured, etc.), some grains, dairy and legumes but do not make them the main staple. Veg is the star of the show. Honey instead of sugar. But don't be afraid of eating more like a 'normal' person when out once in a while. OH YES ... and DO NOT overeat!!! I believe that is one of the biggest problems people have, myself included. I am 108lbs, 5'4" and not really active ... I DO NOT NEED TWO SERVINGS OF SUPPER!! Our portion size must fit our lifestyle. Too much food in your digestive system causes all sorts of problems. I could be overweight. I gain weight very quickly. All of the women in my family gain weight quickly too and many of them are obese. I do not want to be overweight. I DO have control of that.
A big revelation I have had recently:
***Sometimes I think I am feeling better, but then I realize I'm not really feeling better, I'm just getting better at MANAGING my symptoms*** (like going slower and taking a lot of breaks as I mentioned before). When I first started on this journey I would push myself to try and be as 'normal' as possible but that would only cause me to crash big time and/or have a pseudo exacerbation. We MUST adjust our lifestyles to fit our abilities. Gone are the days of being like everyone else. We must figure out what WE are capable of and work to the best or OUR abilities and not compare ourselves to others OR to how we used to be. We are who we are RIGHT NOW. Let's live our lives RIGHT NOW the best we can. Each breath we have is precious and we must not squander our time sitting around feeling sorry for ourselves. This may sound silly but if I cannot do anything else but sit I will go sit outside with my chickens, turkeys and dog. At least then I can enjoy some fresh air and nature ... and the funny antics of the chickens and turkeys. The longer I sit inside the more lazy and depressed I feel.
I visit the elderly and others in need. It's always a blessing and encouragement to ME. If this is not a regular part of your week, I strongly suggest you MAKE IT SO. There are so many that are much worse off than I am. Would I want to be sitting in the same room every day, day after day, with no visitors? No. So I go visit them and we brighten each others days
it's a win-win situation. I exercise to the best of my ability, even if it's a pathetic small movement on my rebounder. At least my lymph system is moving and pumping through my body a little.
I used to have a lot of responsibilities. Now I only have a few. We do what we can. Too many responsibilities causes stress and stress causes exacerbations.
Ok, those are my random thoughts. I'm not sure if they are worth reading but if you made it all the way to the end then maybe they were? I'm sure if I sat here long enough I could think of so many things to say but that's all I have time for.
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