Dare I say????

I've had a better week....really! It's almost like a miracle.  I can't remember when the last time was where I had a week this decent.  But I feel nervous to write about it because it might mean I wake up tomorrow crashed.  I don't want to jinx it.  I guess I'm superstitious...but also experienced that this illness is a roller coaster any which way you look at it.

I have still been feeling ill most afternoons, but decent mornings and a few very short walks and outings without crashing or getting worse....it's amazing how just a small amount of change can so improve my quality of life.  Plus, the feeling of heavy/chest/fluiness has been less poignant.  For so long I feel like I've been muddling through constant, never-ending heavy feelings of sickness....it's so nice to have it lift a little.

Honestly, I can't pinpoint exactly why this week has been decent and I probably shouldn't even try....more vitamin D accumulating in my system (although I take large amounts all winter)?  Going a whole week without a new infection?

I have my PhD defense coming up in early July (it's like a mid-program defense, not the final one).  I also have my brother and his family visiting the week before the defense....good timing eh?  I was panicked because I figured I would barely be able to see them while they were here I'd been so sick and unable to do much more than lay in bed most of May and June.

Now I'm feeling much more hopeful about the visit.  Especially since I already wrote and told them I might not be up for much at all.  Now anything I can do will be a bonus.  And they won't be staying with me which is sad, but also good in that it will take much less energy on my part.

 As for the defense, it is mostly ready to go.  I've been working just over an hour each day preparing my 15 min presentation and reading through the binder (from which they will ask me questions).  I figure even if I'm having a bad day, I'll make it through the 60-90 min....unless I get the dizzies in which case I'd have to cancel, but I've got my fingers crossed.

Spring in the Yard

The lilac bush is in bloom and smells wonderful.  The neighbour's crabapple which hangs over the fence is also in bloom.  I have been spending time laying out back in my chair in the sun.

I am finished another round of antibiotics and hopefully that's it for a long long while.  I'm having significant pain with the AF and cannot wait to see a specialist for that.  Now if I can just stay infection free for a few weeks maybe I'll start to pick-up  energywise in time to better appreciate the weather.

I am just so fed up with being sick....and also being sick on top of already being sick, becuase let's face it, having an immune disease is bad enough without infection after infection.  So I'm posting some pictures of flowers because there are still beautiful things in the world even when I feel sick.

Do you find that feeling so fluey and awful colours how you see the world?  I don't want illness to have that power over me, but when it is at its peak of intensity it does.

veiw from the kitchen

veiw from the patio

11 YEARS

Happy Anniversary to M.E.
11 years today.

Another First

For the most part, I really enjoyed my parent's stay, but I was  disappointed with my health.  The day they wanted to celebrate my birthday I felt so terrible I wanted to curl up in a ball and die and had no patience for any social.  But I rallied for an hour over dinner (Thai takeout which was fantastic) and my Mom, who had also had a bad health day, made a gluten free chocolate cake (photo below) which was very yum.  I told her not to bother, but she did in the final hour and we've enjoyed a lot of cake since.

My energy has improved a little since my parents left - I'm assuming it's the increased alone time and decreased stimulation.  But since the last few days of their visit (more than a week now), I've been plagued by another round of abdominal pain.  I don't know if others with M.E. face this issue, but I am very hesitant to seek help for pain and/or sickness.  The reason is, in the early days of M.E. when I would feel especially sick and fluey, I would go in, be tested for everything under the sun, only to be told more than a few times that they could find nothing wrong outside of maybe swollen glands, "viral looking throat" or a mild fever.  Despite the fact that I felt as if I was dying!

This has led to me assuming every ache, pain, tremor, intestinal issue, blackout-inotherwords every symptom-is either M.E. and/or OI related.  If I do have something that feels new or different, I think I tough it out much longer than I would have prior to M.E.

However, this pain was starting to get worse so after more than a week, I finally went in to get it checked.  I chose a time I knew the walk-in wouldn't be busy.  I did not want to waste my precious energy sitting for hours at a walk in....what a stupid thing to crash from!  I also went to the one only a few blocks from here hoping to get the Dr. I liked.

To make a long story short, I have a bladder infection of all things?  They did a test (strip) off the bat because I reported abdominal pain.  The Dr. thinks my upper abdominal pain is something different, however and changed my prescription for GERD/ulcer medication I take on and off when it is feeling especially badly.

So within just over a month I have had a ear/sinus infection, my first (that I know of) yeast infection, and now my first bladder infection! Obviously my immune system is CRAP.  And to be honest, I am very nervous about taking another round of antibiotics due to my propensity for c. difficile.  But here it goes and hopefully I kick this one quickly and don't react to the antibiotic.

And thanks to anyone who got through my long whine session....

Making wise choices

I feel as if I have very few commitments.  I am mostly homebound, and while I can do a short outings here or there without repercussions, I can't choose the day when I'll be up for it.  I feel like I've cancelled so many things over the last month. Two meetings and two dog training sessions....I guess that's it.

I'm trying to just let go of guilty feelings and listen to my body, use my experience with this illness.  If I know I'm too sick or weak, if I know it will cause a crash, I am not letting myself push.  I mean it isn't just outings, it's also choosing to end phone conversations or not answer calls because I know I am not strong enough.

My folks are visiting and I'm having to just close the door to my bedroom and lay in bed a lot.  The visit is running me ragged, despite the fact I'm not doing much more physically than I usually do.  I try to accept my illness....accept the fact that my 82 year old father, while slowing down, is more able than me.

I did go to market with them and my friend/roommate Saturday a.m.   I was so dizzy I could barely walk.  I found a chair in a hallway and sat most the time, disoriented....things were spinning.

I came home and took my blood pressure 83/62!!!!  No wonder I was so dizzy.

So while it is a terrible thing to feel so fluey and weak and exhausted, I am working hard on not feeling guilty about it.  I can close the door and lay in the semi-darkened room.  If people think it's because I'm antisocial or "down" they can....because it doesn't change the reality that I am pretty darn sick and doing my best to manage despite this fact.