hi..... just signed up for my first walk

Discussion in 'The Watercooler' started by Jena, May 21, 2011.

  1. Jena

    Jena New Member

    hope everyone's good.....

    i just signed up for my first ms walk. it's a 2 day event in cape cod, which is near me a bit........

    anyone that lives near me if you wanna join in i'd love to have you there.........

    its a good cause, i'm not exactly sure how i'm supposed to raise money though :) i guess i'll figure that out when i get to the end of the form lol.
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    You signed up for a walk for two days in Cape Cod??? From what I have been reading here, I thought your MS was getting worse and worse and your legs and arms were so spasmodic that you could hardly sleep? Or have I misread something. I know with the spasms I have that I cannot walk more than 15 to 20 minutes per doctors orders. I am not supposed to stand more than 30 minutes in one stretch before I have to sit for at least twice that long but sometimes that one gets broken.

    I am sure with what I have read, you sound like you are in much worse shape than I am since my arms arent involved with the spasms yet. My neuropathy is only down one leg. But I do know one thing after I have tried other events, I could never attempt such a strenuous thing as a two day walk. I would be amazed. Never even try it.
  3. Jena

    Jena New Member

    lol im going to try afterall they know i have ms. so my family and friends will be there. and ill be able to raise the money. it' snot like i gotta make the finish line. :)

    just wanna feel like i can do something to help other people right now. it's making me feel hopefull so i gotta run with that. yes i dont' sleep much anymore. maybe medications on monday will change that. the ms motto is when i can walk i will walk. :)

    im learning baby steps.... it's all new
  4. Jena

    Jena New Member

    Janet does that mean you won't join me?? LOL :) come on ill push you someone can push me on and on it'll go........... my heart goes out to these people. i'm on a website and alot are in wheelchairs and just a happy post makes their day. i gotta go with what makes me feel good right now.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Well go for it and have fun if you can do it. I learned long ago if I was going to attempt something like that, it took more out of me than it was worth so I found other ways to participate in things or I saved up my "spoons" and used them all up on one thing and then basically died for a while afterwards. I can do that because its just me though. I dont have to take care of a family.
  6. totoro

    totoro Mom? What's a GFG?

    I'd push if I was closer!!! Well be good to yourself lady. But raise that cash its a good cause, ;-)
  7. hearts and roses

    hearts and roses Mind Reader

    Jen, just be careful to pace yourself. And if need be, rent a wheelchair so, a family member can push you.

    If you flew, then you can say you're close to the cape!!! Lol! I think we are probably the same distance away, since I'm in northwestern CT. Give dates and town, please! Maybe I can get H to run away with me for weekend!
  8. 1905

    1905 Well-Known Member

    I'm sorry you have this disease. I recall you saying you don't have insurance, is there some way you can receive assistance for the treatment? Are the medicines expensive? How does this interact with your Lyme disease? I know you had a free MRI and am hoping you can get assistance somewhere. Maybe the walk raises funds for the uninsured.
  9. Jena

    Jena New Member

    Janet yup gotta save up those spoons of mine. you dont' have to complete the walk. you just gotta try is all. i'Tourette's Syndrome beautiful in cape cod google it. i'Tourette's Syndrome not a race by any means. they have break statoins with bands, alcohol, etc. its' kinda like a weekend to get together meet other ppl with it and raise money. we'll c what shape i;m in by than.

    Jo you soo did not use the word wheelchair and me in the same sentence!! :) i emailed you already....... that would be great!

    Toto wow how are you?

    up all night thanks i appreciate it. no it wasn't lyme's was kinda hoping for that lol. it wound up being ms. :)
  10. HaoZi

    HaoZi Guest

    Good luck Jen! If you're not up to walking at the time I'm sure they could use some extra volunteer hands at stations, registration, etc.
  11. Jena

    Jena New Member

    yea janet got me scared lol. i mean i don't have to complete it right? theres' no way i can walk 10 miles in a day i limp to walk my dog :) yet i thought other's i get on my team can and well if i needed to rent a wheelchair they should rent those there..... i would. i figured i dont' have to complete it.
  12. CrazyinVA

    CrazyinVA Well-Known Member Staff Member

    There are many ways to get involved in MS awareness and fundraising, you don't necessarily have to participate in a walk. Can you be away from difficult child for 3 days for the walk, on top of your upcoming vacation, on top of your own physical limitations? You might want to start with a smaller goal, given all you have going on. I have a friend who runs a local organization raising money for MS through art auctions, dinners. etc. You could contact your local chapter of the MS Society to see what other opporunities there are.
  13. Jena

    Jena New Member

    hi and thanks..... yes i joined the chapter for my area last night husband and i did it. to be honest i'm looking forward to it, it's making me happy. i'm just doing whatever makes me happy and trying to just live my life to the fullest.

    a few close friends will go, maybe even husband could turn out to be a great weekend. can i leave difficult child for 3 days?? no doubt, she's 12 she'll be with dad that weekend. she wants to go, yet i told her you won't be able to do that amt of walking with-o driving me nuts and complaining.....

    i will get involved in other ways when i want to, i get it's a big chunk. yet barring any new trauma's in our life i'm going. it isn't something i'm looking down on it's something i'm looking forward to. so it isnt' ah sheesh what did i do with all i have going on. the going on's have actually seemed to lessen.

    we're going to mexico in july, doctor said great idea you could use a break. heat won't hurt my disease i'll just have to pace myself. we have camping first week in july with kids for 3 days getting to see a ton of family i haven't seen in years. it's a yearly thing we all do. so that'll work too, we are bringing provisions for me and a truck with ac i can rest in.

    i'll probably need to recooperate for a few days after yet that's ok. to me this thing i've been blessed with isnt' about resting it's about going harder, and living each day fuller and appreciating the legs i have beneath me while i still have them. this way of giong about it seems to be working really well for me so why change it?? yet i see your point. i'm excited to do it though.

    weird thing happened today went to book store to buy a yoga tape to help with the ms and was looking for a yoga ms dvd. well the girl there starts opening up suddenly.....

    winds up her sister is in the process of getting diagnosis'd very stressed about it, very upset doesn't live in new york etc. i wound up standing there listening for twenty minutes! i said here's my email, tell her to email we'll talk. she was so appreciative. weird isnt' it?? i thought so.
  14. hearts and roses

    hearts and roses Mind Reader

    You have between now and Sept to prepare. Perhaps difficult child could use that time to prepare as well? I totally get why you need respite from her daily need when you've got all this other stuff going on, but maybe she can divide the 3 days between her dad and a friend/family member/grandparent, whatever.
  15. Jena

    Jena New Member

    she'll be with her dad on a normal weekend visit that particular weekend. she's cute though that she wants to go with.... i just know it'll be alot for her that's all. she complains when we walk our dogs lol.
  16. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Well you certainly are doing well with this. I went to the laundry mat and a quick trip to the grocery store today and was down for the count the rest of the day. I wasnt even able to be up to make dinner. My hands were shaking so badly I couldnt even manage to get a phone number typed into my cell phone. Thats when I knew it was time to hit the bed before I collapsed from exhaustion. I hate it when my hands shake and I cant control them and people are there to notice it
  17. Jena

    Jena New Member

    me 2 my arms were moving about a bit at my nephew's communion in church the other day than i was dizzy and almost fell on husband and my father in law! of all people :( lol

    i don't know how else to be. right now i'm stuck in a box it feels like and i'm trying to paint it pink. helping other ppl trying to do this walk is what makes me feel good inside.

    sorry you had a rough day
  18. Marguerite

    Marguerite Active Member

    Jena, my motto in life, especially living with my weird disability - "Do what you can with what you've got."

    At one stage I was daydreaming about going on a long, sponsored trek, a fundraising trip. I would need to rest a lot, it would take a lot longer for me to walk the necessary route. I'd probably need to load my gear into a shopping trolley because there is no way I could carry it; I tend to use shopping trolleys like a walking frame.

    With your gait - get yourself assessed by a physiotherapist if you can. I found that my legs would threaten to buckle under me, so in order to prevent this I developed a sort of stiff-kneed rapid shuffle. My specialist noted this and told me I had to use a walking stick or more, in order to be able to reduce the jarring on my hips. "You'll be crippled by the time you're fifty," he told me.
    I laughed and said, "Too late! I'm already crippled," and he said, "I meant crippled with osteoarthritis, on top of everything else."

    Cutting a long story short, I tried a walking stick for a while but found my arms would not hold me up, just as my legs would buckle at the knees, my arms would buckle at the elbow. So I hunted around and found canada crutches - double-ajustable, so I could have the cuff above my elbow and thereby keep my arm reinforced. I used two to begin with, but quickly moved back to just one in most circumstances. Now the interesting thing - once I started using the crutches, I found I was walking more naturally, no longer needing to stiffen my knees. The stick gave me stability. And for me as well as my doctor, having me walk more normally was the goal. If it took a canada crutch or two to do it, so be it.

    A few years later husband & I took our three eldest kids (it was before we had difficult child 3) to Europe. It was a necessary trip for family, I did not know how I would manage. I figured that even if all I did was get myself there and had to stay in the hotel room most of the time, at least I would be there to mind the kids, especially the littlest (she was not quite 4 years old). But in the months leading up to the trip, I began to walk. I walked with one crutch, I walked around the block. If I got tired, I would sit in the gutter. I didn't care what people thought. As a result, I was as fit as I could be before we left, but more importantly, I had a good idea of my fatigue levels and how my body responded. I knew my recovery times and learned how far I could push myself, and when I needed to say, "Enough!" and stop.

    In Europe - I was able to do more than I had expected to, but I was not able to do everything. I used both crutches a lot of the time especially on uneven ground. You walk like you're a tripod - always three points in contact with the ground. Two legs and one stick, or one leg and two sticks (as you take a step). You can check out my photos on FB - look for the ones from easy child's wedding. One stick. And yes, I was wearing high heels. Not recommended, but hey, it was my daughter's wedding! I openly admit, I took them off minutes as we went in to the reception. I had another pair of flat shoes to wear, and I even ended up kicking them off!

    Back to Europe - the tripod method helped me around some of the most spectacular ruins around Greece. I got to the top of the Acropolis and walked around the Parthenon (two sticks to get up there and definitely two sticks to get down again). I stayed on the bus for other sites. I did not venture too far at Mycenae, the path was slippery, uneven marble on a steep slope. But I did walk through the Lion Gate! At Delphi, I did not reach the top. I knew I had done my utmost and had already seen a great deal I loved. I saved my energy so I could visit the shrine of the oracle and drink from the magic stream (it is supposed to have healing properties - hey, I was thirsty!).

    My legs felt like jelly a lot of the time, my pain levels were up, but my exhilaration couldn't be matched. When I look back at all that I did, I am so glad I pushed myself. But without crutches, I would never have managed. In between the historic sites we were on a bus, being thrown around sharp corners and across steep ravines. The European siesta was another wonderful way for me to recover enough energy to keep going.

    I'm not suggesting you need to use canada crutches like me - you find what works for you. But use aids where they can help you be as normal as possible. Denial is not healthy; it is better to embrace disability in order to step back towards capability.

    mother in law is these days quite hampered by her arthritis, weak muscles and old age. But she is very resistant to using supports and aids. She complains about being house bound, but refuses to use a mobility scooter (which I have used for over 12 years). I used to feel very self-conscious about using my crutches around her, but the doctors had ordered me to. Using my mobility scooter around her used to be a problem. She now sees me zip around between my place and hers, on my scooter. I use it to go for a walk (or scoot). I use it because it gets me to where I need to go, and when I get there I have the energy I need to get out and walk, and do stuff. I also carry stuff on it. I can walk to her house, it is close enough for me, but if I have a pot of stew to carry, then I put it on the floor of my scooter.

    I do what I can with what I have got. And over the years I have needed to replace my canada crutches, when they are getting old and decrepit (like me). I now have five of them! Two of them are my originals, the ones that took me around Europe. I am sentimentally attached to them, but they often get borrowed by friends with a sprained ankle or whatever. Two were ones a friend bought when she had a knee replacement. She then sold them to me for half price and we both got a good deal. And the fifth - another friend who only needed one canada crutch, found that they only can be bought in pairs. So we split the difference and took one each.

    If you can use a walking stick, you may find it is easier. Be careful to begin with - your hand and arm will get a lot more tired, there is always a price to pay. But you will adapt and develop your own energy-saving methods.

    If you begin now, to walk as much as you can get away with, every day, you will be in the best condition to assess whether to go ahead or not.

    The thing is, you could put your life on hold while you wait to go into remission, or to improve. But life continues to roll on for other people, and if you do that you will get left behind. Or you could choose to live life as best you can, do as much as you can, and even if you feel weak and wobbly, you will at least still be part of the action!

  19. Jena

    Jena New Member

    thank you that;s exactly what i've been trying to tell everyone! life is for living not for being sad about this. i have my moments usually at night when my husband's there to support me.