Aa
It's getting harder and harder....
Hey guy's and dolls,
We all have something(s) that we struggle with more than others, for me it's both walking and talking, what's yours?
Walking is a different playing field for me than any other, i'm hanging on by the skin of my teeth with this one, i'm simply not ready yet! I feel like i've been constantly reinventing the wheel, compromising and adapting since 09 but i'm running out of everything, including time. I've got an independence streak a mile wide, always have and if i have any say in it i'll find my way around to keeping it. It's part of my identity.................me
Time is running out on many things but i'm not sure how i can keep a hold of what makes me lol well me, if it takes both my mobility and communication from me. I'm a die hard adrenaline junky talk-a-holic, being physically active and talking to people is basically what makes me feel alive, loose one or the other and i'm still mainly be me but both........oh wow i don't think i've really thought about it together before. Hmmmmm this was not suppose to be a downer post, just keeping it real!
I've always had the belief to keep me centred, "it will get better, just hang tough and you'll get through it like you always do" the reality is that it does get better but gone are the day's of normal, i don't even get back to the normal i got use to these day, i keep having to adjust more but it's getting harder and harder......
Hugs..........JJ
We all have something(s) that we struggle with more than others, for me it's both walking and talking, what's yours?
Walking is a different playing field for me than any other, i'm hanging on by the skin of my teeth with this one, i'm simply not ready yet! I feel like i've been constantly reinventing the wheel, compromising and adapting since 09 but i'm running out of everything, including time. I've got an independence streak a mile wide, always have and if i have any say in it i'll find my way around to keeping it. It's part of my identity.................me
Time is running out on many things but i'm not sure how i can keep a hold of what makes me lol well me, if it takes both my mobility and communication from me. I'm a die hard adrenaline junky talk-a-holic, being physically active and talking to people is basically what makes me feel alive, loose one or the other and i'm still mainly be me but both........oh wow i don't think i've really thought about it together before. Hmmmmm this was not suppose to be a downer post, just keeping it real!
I've always had the belief to keep me centred, "it will get better, just hang tough and you'll get through it like you always do" the reality is that it does get better but gone are the day's of normal, i don't even get back to the normal i got use to these day, i keep having to adjust more but it's getting harder and harder......
Hugs..........JJ
JJ you are right the constant adapting and changing to what is the new "normal" in our lives is a exhausting... necessary but still exhausting.
I think Alex hit the nail on the head when she said we deserve a vacation from this! I would be happy with a day a week where I could walk and move like my pre MS self! just to get stuff done!!!
Hugs to all...
Tracy
You are very cool however your whoever is and much valued online and I am sure far beyond too.
JJ, I hope you are finding that reinventing yourself and adapting to the moment is an option that might work for your mental and physicial fatigue. Both you (and Kyle) have been our glue recently- and as you know from others, it takes a lot from you. It is a drain - physically and mentally - to be in the presence of our MS without a break. Perhaps you can find a few ways to focus on yourself and search for your balancing point?
Redefining the new normal is a hard reality to face and I believe you have hit on a key point to share and its good for others to know it happens to almost all of us. Thanks for giving us a glimpe into your life these days - may it be better today (and tomorrow!).
hugs and more hugs, Laura
Redefining the new normal is a hard reality to face and I believe you have hit on a key point to share and its good for others to know it happens to almost all of us. Thanks for giving us a glimpe into your life these days - may it be better today (and tomorrow!).
hugs and more hugs, Laura
I try and forget that MS is a progressive disease. I live my day to day life free of any major concessions to it. Outwardly I'm fine.
Walking is becoming more of an adventure that it has ever been. Straight lines are a thing of the past. My need to know where every bathroom is grows. Everyday it becomes harder to live in denial.
As effective as my rituximab treatment has been, as clean as my diet has become, with greater regularity of ecxercise, with all that I've done to ward of MS, it advances.
It scares the s*it out of me :-)
Kyle
Walking is becoming more of an adventure that it has ever been. Straight lines are a thing of the past. My need to know where every bathroom is grows. Everyday it becomes harder to live in denial.
As effective as my rituximab treatment has been, as clean as my diet has become, with greater regularity of ecxercise, with all that I've done to ward of MS, it advances.
It scares the s*it out of me :-)
Kyle
Just one more point I forgot to mention JJ. We have never met so I have never physically seen you or spoken to you and yet you have managed to educate me about MS, support me through the good & bad times....so in essence you needed neither your physical voice or mobility to achieve this goal.
Just a thought.....
Karry
Just a thought.....
Karry
JJ, I am with immisceo in much she has already said. I am not having a good time cognitively but I saw your post & I just want you to know that I'm hearing you so even if this response makes no sense whatsoever....I just wanted you to know I'm listening.
You know that from about 2003 to about 2010 I was heavily reliant on the use of an electric wheelchair. It was an absolute confidence shaker for me seeing the world from down there but as time went by I accepted that this was my life and if I was to enjoy it in any way I had to work with what I had at that moment.
I have had many years without the reliance of a wheelchair now but these things are creeping back into my life & I feel like I'm going through the same emotions as before. I am scared to lose too much more mobility because of the pain I suffer from my RA which requires you to move. It is daunting for anybody to be faced with losing their mobility so you are not alone. Sometimes the struggle of acceptance is the hardest part.
You know that even if you couldn't walk or talk you are the same JJ that we all know & love. You could be stripped of everything but your personality would still shine through because of who you are not what you look like. I hope you know how many lives you have touched. You have been my rock since my diagnosis with giving me your time, patience & understanding which I will be eternally grateful for.
I have had the privilege to meet many people with MS more recently who have varying degrees of mobility, speech, cognition etc & I have come to realise that there are so many ways that a person can be assisted with technology / aids that every voice is heard. I have also noticed that even those who have progressive MS have their good & bad times with there capabilities on a sliding scale almost. I guess I'm just trying to emphasise to you that there is always hope & to not lose your hope.
We all have our own lines in which we don't want to cross & I totally get where your coming from. I also don't have any magical answer to this dilemma but at least you know you're not alone.
I really hope I have managed to get my point across here JJ. My brain somehow decided to go on vacation without me so this may all be a tad muddled. :D
Sending you lots of cyber (((HUGS)))
Karry
You know that from about 2003 to about 2010 I was heavily reliant on the use of an electric wheelchair. It was an absolute confidence shaker for me seeing the world from down there but as time went by I accepted that this was my life and if I was to enjoy it in any way I had to work with what I had at that moment.
I have had many years without the reliance of a wheelchair now but these things are creeping back into my life & I feel like I'm going through the same emotions as before. I am scared to lose too much more mobility because of the pain I suffer from my RA which requires you to move. It is daunting for anybody to be faced with losing their mobility so you are not alone. Sometimes the struggle of acceptance is the hardest part.
You know that even if you couldn't walk or talk you are the same JJ that we all know & love. You could be stripped of everything but your personality would still shine through because of who you are not what you look like. I hope you know how many lives you have touched. You have been my rock since my diagnosis with giving me your time, patience & understanding which I will be eternally grateful for.
I have had the privilege to meet many people with MS more recently who have varying degrees of mobility, speech, cognition etc & I have come to realise that there are so many ways that a person can be assisted with technology / aids that every voice is heard. I have also noticed that even those who have progressive MS have their good & bad times with there capabilities on a sliding scale almost. I guess I'm just trying to emphasise to you that there is always hope & to not lose your hope.
We all have our own lines in which we don't want to cross & I totally get where your coming from. I also don't have any magical answer to this dilemma but at least you know you're not alone.
I really hope I have managed to get my point across here JJ. My brain somehow decided to go on vacation without me so this may all be a tad muddled. :D
Sending you lots of cyber (((HUGS)))
Karry
I do not have tough times with my MS more with my Cancer. It is hard fighting the battle everyday. I think we need vacations from medical and our bodies. For every six months you spend going to the doctor you are healthy for six months to do what you want. It is hard when your body which you count on betrays you. It just is not fair!
Alex
Alex
Hugs back at cha, JJ! Whether it's an upbeat post or not, you are the superstar of 'keeping it real' on here, so I'm relieved you're allowing yourself the space to voice this concern.
I think you've hit on something a lot of us think about—what's our theoretical line in the sand, what do we reckon we can lose and still maintain what we consider our innate 'us-ness'. It's such a crap-shoot that it's no wonder our minds can wander to worst-case places, especially as the reality inches closer. For me, it's cognitive function. And every time I walk into a room and don't recall why I'm there (something every human on earth does from time to time) I'll admit it causes a brief moment of disproportionate panic. And when I ace the PASAT test at my appointments, my glee is a bit more manic than is healthy.
You're right—the constant recalibrating, adjusting, compromising isn't without its mental and emotional strain, regardless of how healthy adaptive behaviours ultimately are.
I guess I'm not coming up with any earth-shattering pearls of wisdom here, but just know you're heard loud and clear, and it didn't take using your voice at all. Your personality, passion, and independence come through plain as day on this forum and we're all the better for it. All this to say, you've made your mark, legs and voice not required. You've reached people around the world.
Be mad as heck about changes you can't control, but understand that regardless of those changes you are most certainly you.
I think you've hit on something a lot of us think about—what's our theoretical line in the sand, what do we reckon we can lose and still maintain what we consider our innate 'us-ness'. It's such a crap-shoot that it's no wonder our minds can wander to worst-case places, especially as the reality inches closer. For me, it's cognitive function. And every time I walk into a room and don't recall why I'm there (something every human on earth does from time to time) I'll admit it causes a brief moment of disproportionate panic. And when I ace the PASAT test at my appointments, my glee is a bit more manic than is healthy.
You're right—the constant recalibrating, adjusting, compromising isn't without its mental and emotional strain, regardless of how healthy adaptive behaviours ultimately are.
I guess I'm not coming up with any earth-shattering pearls of wisdom here, but just know you're heard loud and clear, and it didn't take using your voice at all. Your personality, passion, and independence come through plain as day on this forum and we're all the better for it. All this to say, you've made your mark, legs and voice not required. You've reached people around the world.
Be mad as heck about changes you can't control, but understand that regardless of those changes you are most certainly you.
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