Thursday, August 5, 2010

These 4 Walls

My thoughts are a bit scattered today, most days in fact hahaha!
Firstly I went and saw the POTS specialist a few days ago. He didn’t really have a lot to ad to what I already knew and what my regular Dr had said. He did confirm the diagnosis without making me do the icky tilt table test which is good, I was dreading the thought of having to do that. For anyone who doesn’t know about it they basically strap you to a table and tilt it upright as though you are standing. They leave you there until either you pass out or you reach 45 minutes. Either outcome sounds awful for someone with CFS. Anyway back to the point ….. the specialist basically said I should continue with the Saline infusions if that is helping (it is helping), I could also try FlorineF with salt and water which would also work well with the Saline infusions. If that doesn’t help then I could try drugs like Mitodrine, which helps some people but is expensive here in Australia. At this point in time I have decided to just stick with the Saline for a few more weeks and then re-evaluate. I am feeling significantly better than I did in my previous post.

Something else I am noticing is a real increase in weakness in my legs. I am not sure if it’s just because of the CFS or if it is genuine muscle weakness because I am spending so much time laying down that my muscles are wasting. I am tempted to try doing some kind of minor leg exercise to strengthen the muscles but I am really scared of causing another crash.
What does everyone else think about this??

In the same vein as the leg situation I think my brain and general zest for life seem to be diminishing. Again I wonder if it is because of lack of stimulation or if it is directly due to the illness? I do feel like I need to find a way to get out of my 4 walls more often. It’s difficult because many days I am just to ill and on the days when I think I might be able to manage it I am either just to scared in case the POTS stuff happens and I get dizzy or it just seems to difficult. To get out I need help from someone else and that means asking someone to be my babysitter. Mmmmmm ….. what to do, what to do??

I am also feeling very frustrated at the moment. I have a huge list of projects that I want to work on but I can’t seem to gather myself to start anything. By the time I have a shower and get breakfast I am pretty much done until lunchtime and then standing to make lunch exhausts me and so the day goes on ….. AAAAAHHHHHH ……. Frustrating, hahahahah!


  1. Darling , we want to spend time with you, it is never 'babysitting' to us, it is time with a loved one. Let me take you out.

  2. Even some basic stretching (ala yogo-ish) can help keep muscles from wasting. And simple exercise in small bits throughout the day, especially during periods when you're feeling a bit better. I wax and wane throughout the day. And do nothing when it rains... er, wanes. Oh, ain't I just a Silly Wabbit. hehe

  3. OK..I've written too much really LeeLee so if this is more than you can manage now cut to the end with the conclsuion :O) >>

    Yep..agree with K and D (a) you seem to have a lotta lurve around you...I'm sure people are only too happy to help you (though I do know how horribel it is to feel burdensome and an imposition ) (b) yoga-ish stuff can help. You can get special Yoga for PWME gentle they're designed for people who are in bed. May be worth a try.

    I think the malaise and feeling of flatness is maybe you being a tad sad (?) -- not in the sense that your condition is bout depression but because -- well, things are so different now from maybe a year or so ago that it is taking a whole lot of time and energy (which you don't have) to adjust and who wouldn't be feeling sad and lost and flattened. Maybe it might help to try either very small projects in small bitesize chunks (see Michael Nobbs site -- artist with M.E.)..then you wouldn't tire so much and yet you'd see some end result...eventually.

    I tried pushing through with stuff at the start and either nearly killed myself doing it and/or by the end it looked crap (because I wasn't up to it really) and then I felt awful because it wasn't up to my standards.

    1) you're a lovely man who has good friends and rellies who want to help (and many people don't have either let alone both) so do let them help
    2)a little gentle yoga may help..maybe get a special CD
    3) to keep your mojo from getting tarnished, take it out at times when you feel a bit OK and buff it up with a tiny soupcon of creativity ..but one that leads to a greater whole so that you eventually have a sense of accomplishment = shiny mojo ! :O)
    4) We're all here too even if it is 'virtual' and long way away :O)

  4. Lee Lee,

    First take your lovely friend up on the offer to come spend some time with you and take you out.

    I'm so sorry about your legs, it's quite frightening (I know), like mentioned above maybe some VERY gentle stretches in the bed but remember to start out SLOWLY.

    I'm so glad you didn't have to go through the tilt table test, it's sounds quite barbaric to be honest.

    I hear you on the activities, but please try not to get frustrated, maybe pick a small one and allow yourself as much time as YOU need to slowly work on it?

    Thinking of you from across the world. Wishing we were closer so I could come have a cup of tea for a short visit :-)

  5. Hi Lee,

    Exercise... yes, that is a big problem! I exercised too much earlier this week and then got quite ill for a few days.

    I wonder if you could do a leg pedaling exercise, just lying in bed, not raising your head or anything. I found it good for my leg muscles and doesn't make OI problems as much as other exercise.

    I'm glad the saline infusions are helping! I take a lot of salt but I don't always like eating it. How do you get the infusions?

    Take care. We're all here enjoying your posts.


  6. Lee, my self i noticed muscle wastings too last 2 months with some pain i think i over did coz i startd doinf sit up etc, not good, also did colonics b4 that which screwed up possibly more my flora and now where you dont digest well,you dont make proteins minerals etc, when you dont make those enough body will pull proteins from muscles (1st legs) to produce cytokines which keep in check, inflamations, pathogens etc. so my doc put me on weekly amino acids and special diet, supplements to help the gut (did u know 70% immune system and 95% serotonin is made in gut??) i didnot know it, i will send you link read it all makes sense


  7. Thanks everyone, I will take all tyhe advice on board and maybe try some leg stretches etc while laying down.
    Mark, thanks fr the link. I know for me personally that the gut is a huge influence on my cfs symptoms. I have Celiacs and also a Pancreas problem. At the beginning of this year I took anti biotics fr 2 months to clean out bacterial overgrowth and it made a huge difference to all my symptoms. I also take Creon which is a dygestive enzyme which helps me absorb nutrients etc ... my pancreas isn't doing it's job properlly so the creon helps.
    Which amino acids are you taking?

  8. I did the tilt table an yes it was absolutely barbaric. I was strapped onto a flat table so I couldn't move. It was tilted. I passed out. They revived me. Repeat. Repeat. Repeat. Repeat. Over 2 hours of torture. So glad you didn't have to experience it Lee Lee!

  9. hmmm....For me, when I'm as crashed as it sounds you are right now I find any exerise makes it worse. Just the activities of daily living are enough. When I feel I really need to do something, though, I focus on strengthening rather than anything from the cardiovascular category.

  10. Lee this product is actually from australia if you google dr tim roberts and his amino acids. i get one from usa is diffrent, but his product is very good too

  11. So glad you didn't have to do the tilt table, that sounds like a horrible thing to go through regardless of having a chronic illness or not!

    I would take up any offer a friend has to go outside with you. You are not a burden and you don't need a babysitter- you need a friend who cares for you and wants to help you out. You are very lucky!

    When I was very ill and didn't have any energy, I would get off the sofa or out of bed every hour and just have a little walk around the room for 1/2 a minute. I increased that over time, as long as I didn't have any symptoms the next day. Perhaps that would help you?

    I know how frustrating it is, and hope you have people around you to talk about how frustrating it gets. Lots of hugs coming your way!

    PS. When I was feeling VERY low, (and I still get very low when I relapse)I went to my GP to talk about it and he said I had 'circumstantional depression'. I was sad because of being ill for so long, not ill because I was depressed. (I hope that makes sense!) It is such a hard thing to cope with, but you are not alone in the struggle!

  12. Lee Lee - Catching up on a few of your posts. So sorry to hear that you had such a terrible, frightening crash! I'm very glad to hear you've recovered a bit from it though! Meds are so tricky, we're so sensitive to so many things!

    Re: stretching. I am like the CFS cheerleader for stretching haha. Rah rah rah! I'm a huge fan :) Even (gently) holding a stretch for as little as 10 seconds helps a lot I think, even in just increasing blood flow to our sad little muscles. And you can work up from there day by day, week by week. I also sometimes just sit with my arms out (parallel to the ground) and hold it for maybe 15 seconds (so little I know, but I can barely do that) and just add a few seconds every 2-3 times I do it. Makes me feel strong :P

    Re: zest for life. A friend of mine visited a few weeks ago; it's been a year since we're seen each other. She said I smile much less and just seem to enjoy the things I'm doing much less than before. I think it's inevitable; it's hard to be zesty when you just don't feel well! Plus, I think happiness is really an energy-demanding state; I always feel like I'm drawing up a ton of energy I don't have to be happy or excited. Maybe that's just me though.


  13. Oh, sorry to hear you're struggling so much right now but it's good you're getting a handle on OI - just understanding it can help a lot.

    As for Florinef, it has been like a miracle for my two sons, but the experts say that it rarely works for adults. It's inexpensive and worth a try, but I thought you should know the odds are against it.

    There are other meds that sometimes help, though.

    As for leg weakness, I find that simple stretching and gentle yoga (sitting or lying down) helps to ward off loss of muscle tone.

    Hope that better days are ahead for you -


  14. Lee Lee - I'm so sorry to hear that you are still struggling. Always seems like an uphill battle doesn't it?

    I didn't realize the tilt-table was like that! Yikes. Passing out once is bad enough but having to repeat the process. Yeesh!

    I know there are exercise videos you can do in bed that will help. Since I was exposed to mold and chemicals toxins last month, I have been struggling with leg strength so I do understand at least from that perspective.

    I love you honesty and you determination. Hang in there. Oh yeah, if you feel up to it, take you awesome friends up on their offer. It sounds like you 4walls might be closing in on you. A new 'view' might just be the breath of fresh air you need!

  15. LeeLee..just wondering if you were able to get tested for XMRV...?


  16. Thanks again everyone .... I am certainly on the mend, just about back to my baseline now thankfully. I am still having POTS issues but they are nowhere near as bad as before. I am doing the lots and lots of water and as much salt as I can tolerate protocol and getting weekly saline infusions and it's all really helped.
    "S", no I haven't been tested for XMRV although I'd like to. There is nowhere in Australia reliably doing testing and I haven't found a way to get tested overseas .... any suggestions? Has anyone else been tested??

  17. Hello,

    Might I suggest some simple slow movement. While lying down shake your legs, like a nervous move. Try lifting your legs up and down gently and slowly. Any type of movement will get your circulation going.

    The zest for life is hard when you are chronically fatigued. Don't let those projects and chores get you down. Prioritize and take it one day at a time.

    Go out to a park, mall, or even outside your home, sit down and watch people. People are interesting and they can make you smile. Children are always smiling and having a great time. Watching them can put a smile on your face.

    Sending you soft hugs and prayers.

  18. for me, even when i'm really bad if i can find the energy to do a few yoga stretches (AND manage not to do too much - not so good at this bit) it always helps. have a great book written by someone in the UK who was in a wheelchair with ME when she started yoga and now teaches bit is it has suggestions for all levels of severity, inc. bedridden.

    losing that muscle tone is such a downward spiral (and seems to happen so fast) but it's one of those things i think that at some points you really can't push your body without making things worse...