Feedback

Today I received an email from some-one, titled Wondering, who had read my previous post:

Hi. I just starting following you but have been to your site many times. A good friend sent me your link about a year ago. Anyway, I just read your post about yoga part 1 and your humor made me smile, I thank you for that. But It (the story) made me a little sad and depressed because it left me wondering and thinking to myself (omg how can she even do this? Is she on some major drugs or something. Maybe she just doesn’t have fibro as bad as me.) Because I have to tell you, there is NO WAY I could even attempt to do any of that. I can’t even get things done in my house I need to do. And I can’t remember the last time I felt good enough to even go to the store for milk, forget about doing the weeks shopping. So please tell me, how do you do it? Also in one part you mentioned running on 5 hours of sleep after getting 10 hours the night before. That made me envious. I never get more then an hour here, a couple hours here. heck, I’m jumping for joy if I sleep more the 3 hours at a time. Once in a while (very rare) I get a whopping 4 hours. Please understand I am in no way doubting your illness. I am just wondering how you do it.
This is what I responded (in case any of you are wondering, too):
I have only been diagnosed with FM since November. I started my FB page and blog in February. Right now, I am dedicated only to finding ways to feel better – I have been unable to work because my fibro fog is terrible (most of the time) and I am supposed to be a lawyer (who would want to see a lawyer who has trouble remembering and slurs when tired?). I am living on my credit card, which, sooner or later, will max out and I have no idea what I’ll do then; unless I can get better!
I take Lyrica (which is incredibly expensive) but it seems to help me with the pain, more than any other drug. Until the other night (10 hour sleep night), I was taking Stilnox every night (since December) for sleep. If I missed a dose, I didn’t sleep. The other night, I started Circadin (prescribed by my doctor) and was totally amazed when I slept for so long! This isn’t a common occurrence! Most sleep that I have is the kind where you doze off then wake up, then doze off again. I’m hoping the Circadin will help.
My house is a mess – I can only do one chore at a time (and I used to be the Queen of multi-tasking) so by the time I finish them all; it’s time to start at the beginning. And, as I said before, I am pretty much JUST doing the stuff that is supposed to help me. So yes, yesterday I went to hydro then yoga (actually that pretty much amazed me, too) but today, my cousin picked me up (I can’t drive because I feel like my reflexes are so slow that I’d be a menace) to go to my mother’s place, where I promptly fell asleep for a three-hour nap. It seems (and I only have the last week or so to compare anything to as that’s only how long I have been doing these classes) that I crash after a couple of days of this activity – big time crash! I have to hide inside with my sunglasses on and my heating pad(s) all around my body!
 I live alone so I don’t have to take care of anyone else – when I close my door and hide in my cave, it’s just me. Most of the time, it’s just me, my couch and my lap-top.
 So, yes, I seem to be doing lots and lots of activities – but that’s it for the day. I may do an hour of hydro (and if you have never tried it, you must! The warm water lets your body do all the things it used to do!) but then I come home and do absolutely nothing until the next class, on the next day. I don’t even cook – I live within a major shopping area where it is so much easier and cheaper to get take-away than cook for one. I must say that I feel better having done physical activity – not necessarily physically, but in my head. I feel enthused and energised again – almost like I could do anything (even though I know that I can’t)!
I try not to dwell on all the bad stuff when I’m writing my blog because a) it gets me down when I think about it; b) there are plenty of other people out in cyberspace talking about that stuff, and c) would you really be interested in reading only bad stuff? I’m trying (in my small way) to inspire and let you in on my journey towards feeling better. Because I am determined to do so.
Please read my post ‘A New (and better?) Philosophy’ (http://fibromodem.com/2012/03/17/a-new-better-philosophy/) so you know where I am coming from. I have decided it is all worth it.
And (try) to grab the good moments!
And while I am here, I am so honoured that you bother to read my blog. And I am incredibly thankful for your wonderful comments. Feedback makes it all worth it!
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6 Comments

  1. I totally agree with whoever wrote to you! I love reading your blog on the days I don’t want to get out of bed to remind myself that there are other people struggling with this (even half a world away!) and they’re kicking ass every day!

  2. You go girl! And don’t apologise. 🙂

  3. And really, is it a competition who feels worse? What a selfish self absorbed way of looking at the world, I am amazed at all you do and so proud of you and I hope you keep on pushing yourself to feel better!

  4. You, your couch and your laptop. I can relate to that so well! 🙂 You do a great job of sharing information and your journey. Each of us have different struggles and challenges, but the support and courage we can draw from each other will only serve to make us stronger. 🙂

  5. Pingback: Zoom Zoom Zoom (Fibro style) « fibromodem

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