About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Saturday, November 30, 2013

Checking In & Updates


A very quick "hi" since I feel I'm neglecting quite a few friends out there.  Oh good grief, I've taken my night meds so I really shouldn't be writing.  I KNOW I'll regret it in the morning.  I'll be upset and think, "your brain told you not to go there! Why did you do it?"  Well, it seemed like a good thing at the time - that'll be my answer to myself and hopefully things won't be too bad.  (Right! Huh!)

Also, I'm beginning to realize my posts don't need to be earth-shattering info all the time (took me long enough!), that I don't need to cram every thought I've had into one long reading, and furthermore, that they do not all need to have a huge purpose with life lessons thrown in.  In other words, I guess I need to loosen up.  Just one problem: I'm not a person who can loosen up, ever, much as I've always tried!  Ask my family. Ask anyone who's ever worked on me from doctors to masseuses to phlebotomists to those who know me well. It just doesn't happen.

But to catch up those who aren't on Twitter, you've sort of missed a few "adventures" of this spoonie who is really getting ticked off with the complications from ME/CFIDS/CFS and fibromyalgia.  Last we "spoke" I'd finally had "the works" done (hair, lashes, brows). Unfortunately, I had to stop by one of our local hospitals for an X-ray after our big day out in order to see what's going on with the painful and limited motion in my left shoulder. Turns out that I'd somehow managed to mess up my rotator cuff.   (See this link for more on what great things happened that day!)

I'm hoping to bring us up to date because it's another thing I can laugh about...well, sorta.  But there are a whole bunch of things I'd like to talk about so let's pretend this is a "Friday Tidbits" with bullet points.  I'm going to tease you a bit.  These bullet points will serve as a reminder of what I want to talk about this week. Yes, folks, I'm going to try mighty hard to get back to posting on a more regular and frequent basis.  I must get away from the getting sick and hospitalized thing.  Uhhhhh..... My plan - the stories behind the following:

  • Yes, ladies and gents, you may have realized why I'd gone MIA again.  It was yet another hospitalization!  
    As I laid in pain, nauseated, I have to admit that shallow me was ever so thrilled that I happened to take a bath and wash my hair before we made the ER run.  More on this later - both medical issues and "shallow" ones as well.  In fact, I did manage a very rudimentary mani while in the hospital.  More on this later. Standards must be kept!
  • MY new theories about what's going on.  Well, perhaps not what is going on, but a possibility of why it's going on....
  • And how could we have Thanksgiving without my addressing food?  There's a lot here.  Also, if I can get my act together I'd also like to occasionally give you a few recipes or food ideas which keep me going.  I don't know about you, but I can never decide what I want to eat, if I should eat and so forth. So, recipes and ideas, might be coming down the pike.
  • I've a few more ideas for what to add to your prepared hospital (or travel) bag.  I realized I needed these additions the hard way.  
  • What have I been reading?  Not much, mind you, but I'm enjoying what I've discovered.
  • I can't believe I'm going to say this but...for the first time since I was a elementary school girl, I'm going to make a few real thought-out New Year resolutions. (I can't wait to see the backside of 2013!)  Instead of just grabbing the first couple of ideas that pop into my head at the last minute, I'm going to give this some real thought.  I think I have one badly needed resolution figured out which will help others.  We can even egg each other on support each other with this.
  • Making a list of what makes me happy and puts me in a good mood - and why I need this list.  (It's a must!)
  • Making a list of what makes me sad and really impatient and puts me in a most rotten mood. (It's also a must!)
  • Why I need to work hard on making changes which will put me in a mood light enough to really have no problems saying things which I'm grateful for at next year's Thanksgiving table.  I know.  I hate to sound ungrateful but I'm putting this in at the moment because I know that there are too many of us out there who have problems coping with the holidays - and I wouldn't want anyone to think that they're alone in the not greatest of mood mode!  (Experience here!)

These are just a few of the topics I hope to discuss in the next few days/weeks.  Some have to do with the hospitalizations (the one this week and the one just prior) and the bit of brainwashing that goes on.  Or as I like to call it, "propaganda." 

I'm praying that my health allows me to follow through with that which I want to do. Following through and staying busy in general: now THAT always puts me in the best of moods! 

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

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  1. Hi Irene, Welcome back! Feels like you've been gone for ages. So sorry that you've been in hospital again. I found myself at A&E a week ago, only to find out that I've had pneumonia for almost a month before that. Feeling much worse and the antibiotics haven't helped, so I have to go back. I was hoping to do that today but it was impossible! Will try over the next few days. Let's see if they do an x-ray this time. Like you, I can not wait to see the backside of this year. Look forward to your future posts. Take care, Alpa xx

    1. Oh Alpa, no! I hope they find the right antibiotic for you soon!

      I don't usually get vaccines but after a couple of episodes of pneumonia where it was hard to find the antibiotic which would wipe it out, I did finally get the pneumonia vaccine.
      However, I didn't realize that it does need to be repeated in a few years and got pneumonia again last year. So, perhaps it might be worth looking into the vaccine? I can't tell you how much safer I feel knowing I got it and it seems to be a big help for me.
      Thank you for the welcome back. I hope you feel better really soon! xx

  2. Thanks Irene. Me too! I usually get bronchitis and not pneumonia. I'm reluctant to have the flu vaccine again this year as it makes me feel so sick. Will look into the pneumonia vaccine, thanks! I think I forgot there are no limits to how sick you can feel. You did make me laugh though, as I was thinking it would be good to take a bath, wash my hair and make myself presentable before I go to A&E. There were three people in their pyjamas last week when I showed up! I've also been told I need to loosen up. What to do...lol. Hope you feel a little better soon. Take care, Alpa xx

    1. Wow on the bronchitis end, Alpa. Mine always started with bronchitis (if I'm not mistaken) and turned into pneumonia. As to the flu vaccine: the couple of times I got it, I became really sick. I think my immune system just couldn't take the stress? (Again, I want to say "if I'm not mistaken'). There is literature that says our immune systems don't "remember" the flu - this I believe! How's the hunt for the right antibiotic going? Hope you get real relief soon. xx

  3. This ME/CFIS diagnosis really is a nonsensical one as it really addresses nothing nor provides any treatment path for the future. So really, the core of the issue as I see it is that, because medics have no concrete evidence as to what is wrong, that use that label as a means of getting patients out of the surgery/office aand we are really left to fend for ourselves. I was told that I would need every ounce of determination to cope with it, and, by heck, he was right.
    Like you, as far as I can see from the above (always wary of mis-understanding something that people write) I gradually get worse. It's almost imperceptible on a day-by-day basis but over longer periods it is clearer that less and less is achievable.
    Being a realist, I have accepted that no doc is going to change my suituation re ME in the near future so I just try to get on with it.
    Ironically, another medical issue that showed up during initial tests - osteoporsis - and which never affected me in any way is improving!

    1. Yes, you read me correctly, Greg. I am getting worse each year and now it's getting to each month. It truly is almost all to do with treating - as well as coping with - the symptoms as best as can be. Reactivation of the flu that caused my ME/CFS is more frequent now, be it from having been ill for so many years or age or a combination.
      However, I must point out that though I've yet to find any "solution" and that though I don't think there's going to be any cure for me in my future, I do appreciate a diagnosis, a title, though it IS an insulting one! I looked for an explanation for too many years before I finally got a diagnosis. I do believe that because I had no diagnosis for so long, and because no one understood what was happening, I did get sicker than I might have had I gotten, at the very least, rest. Don't even get me started on the damage that exercise caused. Ugh!
      I'd like to hear more about the osteoporosis! Thanks for writing in! xx