fighting (discussing with my wife) need help

    • Anonymous
      March 26, 2010 at 4:46 pm

      I have been having a constant discussion with my wife (the lovely one) about how much I can do. I say ,I do as much as I can and the worst that happens is a bad day or two. She says that if I do too much I take the chance of pushing my healing back or actually doing damage. I am working three hours per day now and busy stressful days do take a toll. I had one really bad day when I thought that everything (numbness, muscle strength, and lots of stabbing pins all over my body) was returning but the next day I woke up feeling good (well you know, good, as in the way I was two days before. I want to push my limits and she says not to even think about getting close.
      Question #1, does over doing cause damage, relapse, or just a bad day?
      Question #2 I want to plan a vacation for this summer which will mean a day of travel, car, plane, car. I think I can handle the stress of flying she is not so sure.
      Asked my doctor but you know how that goes, how would he know?

    • Anonymous
      March 26, 2010 at 5:00 pm

      Harry, I am not sure I am the best resource to comment since I did not have your severity, but I think as time goes on, you can push yourself more and not have relapses. I have noticed that if I would overdo it on the weekend, I would have relapses. Now, I can go longer stretches of activity and not have relapses. You just have to pace yourself (hard, I know) and not push it too much on the days you feel good. I would do that and pay for it the next day. Now I do one activity and then take a break. My hubby would tell me to watch it too…that is what they are there for, to look out for us!! I don’t see anything wrong with trying to plan for a trip. It is a good motivator, but maybe keep your limitations in perspective. I had a “mild” case, and I would not consider getting on a plane just yet or a long car ride. Good luck and take care of yourself!

    • March 26, 2010 at 6:40 pm

      Sorry Harry, gotta side with your wife!!! About the trip, where were you thinking of going? If there is lots of walking I would say no way or at least see if there is a scooter rental at the places you are visiting should you have a bad day after. I would for sure get the insurance. We went to the Bahamas 6 months after our dx and I was not sure how it would go. We were tired when walking at the ports, helping to wheel one of the luggages and the airport walk, customs etc was exhausting. If you are going on a cruise or Bahamas or other country, the insurance is good because if you have to go to their hospitals, you have pay right away, credit card. They don’t take your bcbs insurance card! The vacation insurance covers up to a certain amount. As well it takes care of helicopter medivac back to the nearest states hospital. If you have lots of time, maybe one day to travel and rest the rest of the day after the airport and the next days keep it to one activity maybe you could do it. The travel insurance is also good for having to cancel as well as emergency return flights.

      About the damage. You will have to think about where your most damage was and inseret this example. Lets say your feet/ankles had the most damage. well your calves and thighs are picking up the slack and using their muscle energy to do their job and the work of your feet/ankles. So they are already on overload. When you do too much, you REALLY tax them because they are doubly tired to begin with resulting in the fatigue and the pain in the feet and ankles is bad because they never should have been doing that much anyway. Sophmoric example, I just wanted to keep it simple. Permanent damage? I don’t think so, but I imagine muscles, tendons etc would be pulled/fatigued. It could set you back if it were bad enough of an injury but not really permanently. Like I always say, I’m just a mom, so follow your docs advice and your heart!

      I think it would be nice to get away and have a change of scenery, I would just start out small and inexpensive in case it turns out to be too much. If it works out, then up the stakes next time. Plus if your wife turns out to be right (and you know we usually are:D ) You will never hear the end of it!! So compromise somewhere in the middle!

      BTW if you don’t mind, and your wife is able, if you do curbside baggage check
      (which I would suggest anyway to save your energy) ask for a wheel chair. If your wife is able to push you, when you get to the counter, you get preferred seating. If she is not able to maybe they rent scooters w/in the airport. As well you could purchase one of those wheelchair/rolators at Sams club, walgreens and use it just as needed. I think they are like $75 It would get you to the front of the line at check in and if you are going to ride the roller coasters, it gets you to the front of the line for free!!!:D They fold up and weigh hardly anything so you could just use it at the airport to conserve energy and throw it in the rent a car trunk and forget about it till you leave.

      I say go somewhere small and have some fun! Not too much wine though!!

    • Anonymous
      March 27, 2010 at 11:53 am

      Hi Harry…..all things considered, I think it is better to error on the side of caution (less is more), rather than keep pushing into the unknown. I understand your desire to want to return to normalcy, but sometimes our ego needs to be reminded that we are in a long distance recovery race, not a sprint. I would tell you to set realistic goals that allow for plenty of rest.

      When I was sick, I promised my family that when I recovered, we would go on a vacation…….well, earlier this month, I fulfilled that promise by going to DisneyWorld… took almost one year, but it was worth the wait. And I had no adverse effects from all the walking and the plane ride. If I had tried it earlier, I don’t think that I could have been successful.

      On a secondary note………….when I was first released for work, I did not have the luxury of part time……and on a sort of mixed blessing, I was laid off. I think that actually helped me, because it gave me extra time to recover. When I was called back, I was much stronger and capable to do the 8 hours of standing that were required. Although your situation may be different, I don’t think you hurt yourself by taking more time to get back into the swing of things.

      I want to run normally again so badly, but I have assurances from my neuro that if I don’t overdo now, in 6-12 months, I will be fully recovered. Personally, I like those odds, and am willing to wait.

      A parent may often brag about how quickly they potty trained their child, but does that really matter when they’re being handed their diploma at age 18? Take take…….stay positive and keep up the good work.

    • Anonymous
      March 27, 2010 at 12:28 pm


      You’ve received great advice, but, I’d like to add my 2 cents.

      I gotta agree with the wife. I love the fact that you have the fight and “full speed ahead attitude”. However, it may be too soon from the baby steps and toddler runs to a full out marathon.

      You honestly don’t want to overdo it and undo all the good you’ve done. Nor, would you like to have a less than optimal vacation. Though the point of a vacation is relaxing, more often than not, you need a vacation when you return from your vacation.:D

      Take care and be safe!!


    • Anonymous
      March 28, 2010 at 10:03 am

      I must say that i am not happy with the results so far but my wife is gloating….see told you so. The vacation is a beach vacation with my dauther, son-in-law and granddauther. Most physical activity will be a 10 minute walk to the beach. Mainly worried about the travel days.
      Thank you all for your advice, it is appriciated.
      My glass is not half full nor half empty; just happy to have a glass.

    • March 28, 2010 at 10:26 am

      A beach vacation might be doable. Are there stairs down to the beach or is the property on the beach. Would you be open to the scooter/wheelchair option for the airport? If you did those things,m It might be possible. Would there be much sightseeing? If so if you give a little and agree to one of those lightweight wheel chairs I bet your wife might be a little more agreeable. I like your last sentence about half full/empty! Btw, check out some sort of service fed ex is offering, it is a flat rate for your luggage with door to door service. They p/u your luggage from your house before you go and deliver it to your destination, I could have swore it was a low amoiunt, I thought I remember $35 dollars for several bags, that seems cheap so don’t quote me. but it would be a great option on several accounts, mainly you would not have to deal with bags at all, it sounded like it was cheaper than what airlines were charging these days per bag and you could be sure it would get there with tracking devices compared to the hit or miss route at the airlines. Just think no tip for a sky cap, no waiting at the luggage return belt, no tip to the limo driver upon return, no dragging the luggae through the check in line!! I did think of a down side, one more entitiy would know you left your home (fed ex guy picking up luggage unless you drop it off at fed ex center. It sounds like you are confident in feeling like it is an attainable goal, if you guys all work together maybe it could work. ๐Ÿ™‚

    • Anonymous
      March 31, 2010 at 12:11 am

      Harry: Another male perspective-listen to the wife! My wife always knew when I was crossing the line, though I would say I feel fine and I’m good to go-I always paid later. It is not that overdoing will cause a relapes, but it is worse than causing a bad day. You can sick with something else because you are weaker than normal-you set up a fatigue cycle that is hard to come back from and you discourage and depress yourself by trying too hard and failing.
      On another note, I am in a scooter and when I travel drive right onto the plane-they take it then and have it waiting when we land. I literally don’t have to walk a foot and that makes a huge difference for me in travelling. As for beaches, hard on walking and really hard for wheelchair or scooter. If you can factor in rest time vacation might be ok, though frankly you are very new to recovery still and might want to wait until you know better what your limits are.
      I always try to be quiet for a while when facing a decision like this and ask myself what do I really objectively feel? Then I ask my wife what she suggests and then I listen to her.:confused: Jeff

    • Anonymous
      March 31, 2010 at 12:52 am

      I was happy to find this thread, right up at the top. It’s one of my questions, as well. I wondered if it’s better to do what you’re able to do, to keep the snapses firing along the right routes (I know nothing, lol) or if you need to rest as much as possible in the early days. (We’re two weeks and three days in, from the very first symptom.)

      In our case, unfortunately, we just discovered that diabetes is an issue, as well, and need to add daily exercise to the new diet we now must follow. Add another discovery of hypertension, and you have the package of what we are adjusting to.

      I need to figure out how to create a signature, so the basic info will be at the bottom of my posts, for reference.

    • March 31, 2010 at 12:07 pm

      Caregiver, I am so excited!! I think I might actually know how to do something on the computer that you are asking about (you are new here, so you are not yet aware that I am remedial with computers ๐Ÿ˜€ ) Anyway, at the top left corner, go to the user control panel I think it says user cp. and you will find edit signature!! I hope I am right because I am so excited. See guys, I told you I was going to conquer this problem I have!

    • March 31, 2010 at 12:09 pm

      Can you talk to my husband!!:eek: He did not get those pages in his manual of how to be a good husband!! LOL

    • Anonymous
      March 31, 2010 at 2:44 pm

      [QUOTE=Dawn Kevies mom]Caregiver, I am so excited!! I think I might actually know how to do something on the computer that you are asking about (you are new here, so you are not yet aware that I am remedial with computers ๐Ÿ˜€ ) Anyway, at the top left corner, go to the user control panel I think it says user cp. and you will find edit signature!! I hope I am right because I am so excited. See guys, I told you I was going to conquer this problem I have![/QUOTE]

      Dawn, I loved this! You made me laugh out loud, so much so that it warranted spelling it out rather than just typing lol. And you would have been exactly right! As soon as I posted that last night I went straight to the UserCP, figured out how to do it, and added my signature. I didn’t see your note until just now, but you nailed it. That’s exactly how I did it. I don’t even know you yet and I’m proud of you! ๐Ÿ˜€

    • March 31, 2010 at 2:49 pm

      Don’t be too proud yet, I can’t figure out how to get Alice’s link she left me. I have the highlighting part down now I have to figure out how to get it to that other box ๐Ÿ˜ฎ I can feel it!!

    • Anonymous
      March 31, 2010 at 7:19 pm

      There are two ways to argue with your wife. However, neither of them work! You should have learned this long ago.

      My advice – go to the beach and just pace yourself.

    • Anonymous
      April 1, 2010 at 10:00 am

      Again thanks for the advice. I have learned over the past 36 years that my wife is usually correct. If she reads this I edit this to say always correct. the beach vacation will happen in July. The resting and taking it easy part is happening as we speak. I have learned that if I don’t relax and get proper rest I get these electric jolts all over my body. Every squre inch has got a jolt at some time or the other during the last couple of weeks. I call the healing jolts and I certeinly hope that is what they are.

      It is spring this week here in Wisconsin, next week may be winter so I am on my way out to sit on the back patio, soak up the sun and listen to a book on tape. If I am lucly I will fall asleep and dream of summer.

      My glass is not half empty nor half full. I am just happy to have a glass. Today it is full with ice tea.

    • Anonymous
      April 1, 2010 at 10:31 am

      Well I guess I am the rebel in the group. I look at staying active as a way to keep the muscles moving. Do what you can do, when you are tired rest. Call ahead with the airline, arrange for Handicap assistance they will meet you at all the gates and transport you. I sent my daughter off to Disney with friends for a week. It was the best thing for her, and the my sanity. She knows her limits. I also send her off to school everyday, granted she comes home and knaps for 4 hours. My phylosophy is the more normal you can keep your life and the more you adapt to the daily goings on, the healthier you will become, spiritually, mentally and physically.
      Now I am no doctor this is just my philosophy.

      Good Luck Harry,
      PS. The beach can be a very healing place all on its own.