Busy Busy August.

Just a short post to update you on my Aug. which has been crazy busy.  Can you believe I still have moderate M.E.? Really you say?  You mean after more than 12 years you haven't suddenly overcome this illness through magic, herbal cleanses, or positive thinking? You mean you still have M.E. everyday?  That can't be right?

Well my friends, it's true.  And despite M.E. I chose to travel this summer to both try to do some research, and to visit my parents.

So first, while I did great on my interviews for my research, my observations were a complete bust:

Travelled too far, program was cancelled, friend's van broke down (which was supposed to allow me to travel with feet up at the least).  Her friends rescued us which meant I had to sit up for a 4 hours drive.  That next day I came down with a serious intestinal infection that had me living in the bathroom.  After 48 hours where I almost had to go to the hospital for dehydration (AGAIN??!!!) I recovered and then traveled again (2 hour car ride) to my parents.  While i did OK here the first few days, I now have either an M.E. crash and/or infection: significant fever, fatigue, very painful breathing, swollen glands, M.E. weakness, and lymphs etc etc.  AND I have to travel again tomorrow (thank goodness to home).

I can't wait to see my puppy, it's the longest I've ever been without her.  Hoping the fever isn't too bad for travel tomorrow as it makes me weaker.

Gardening, a dangerous activity?

In the spring and summer, one of the activities I can still manage to take part in is gardening.  I say "manage", but even so, I have to be careful.  One of the worst triggers for me fainting from OI is (interestingly) squatting then standing.  I once had a 1/2 faint in a book store for example, from squatting to look at the books at the lower shelf.  My most recent faint was pulling a few weeds in the garden.

Anyways, about a week ago, my friend/roommate and I drove to the local gardening centre and I bought some perennials that were on sale for my front gardens.  It's a native plants garden that is migrating into becoming a perennial garden.  I have one garden (the left) that I am trying to maintain as a mostly native plants garden….native to Ontario and Manitoba at least (rather than Europe).

The theory is, native plants are good for the birds and pollinators, as well as being easy as they are conditioned to flourish in the local environmental conditions.  But as they haven't flourished in the right garden, I've decided to throw in some other perennials as well.

The left native plants garden

Later in the day, after the outing, I was so excited to get my new plants planted that I did the classic 'over-do'.  I cleaned out a small section of garden (while sitting), then made a few holes for the new plants (which involved some standing).  Anyways, my legs started to get very weak and shaky, but I decided to ignore it because I hadn't been outside long, and I was frustrated by my lack of strength doing what seemed like a simple task.

Next thing I knew, my leg muscles quite literally gave out, collapsed, and I found myself sitting on the driveway without the strength to stand up???? I was so weak, that every time I attempted to get up my legs just didn't have the strength (would give out).  I sat there for a while then managed to get into the house and my bed.  I realised it was a combo of weakness along with some OI (one of the symptoms of OI can be shakiness/weakness) and perhaps I had not had enough water as it was a hot day.

When I tried to get up and go to the kitchen to get some water, I was still too weak to make it.  Embarrassingly, I had to call my friend/roommate who was at work, and she came home and got some food and water to my bedside.  She also watered my newly planted perennials which I didn't want to loose after they cost me so much to plant (physically, not financially).  After 2 hours rest, I had the strength to get to the couch to watch TV, use the bathroom...48 hrs later, I was back to my 'normal' strength and could walk the equivalent of a 1/4 block.

Lesson learned: when my muscles shake from weakness, they really are weak and I should stop what I'm doing.

Left garden, prairie sunflowers and pearly everlasting

What a strange illness this is.  Some days I can be quite disabled physically, while other days I can maintain a low level of function.  As I sat in bed that day, unable to walk, it scared me to think how quickly I'd become unable to function, even for a short couple hours. What if this were the norm? In that state, I could no longer live relatively self sufficiently.   How would I get food (and I don't mean shopping which most days I can't manage, I mean walking to the fridge or kitchen to actually get some food!) How would I get to the bathroom?  I wouldn't be able to let the dog out!!! What would happen to my closest companion?

Really, I just need to be a little more careful and listen to those signals from my body.

My front gardens are about to come into their peak summer/fall bloom.  I have flowers that bloom in the spring (lupines, flox, Canada anemones, pinks), then there are a bunch of flowers that bloom in the mid summer lasting well into the fall.  I think it will be a year or two more before I get the right garden looking good, but the left one I'm fairly happy with (because I like a wild, untamed look).  I will try to remember to post photos when it is in full bloom.

Right garden with new perennials in foreground

My busiest month of the year is now upon me and I am forcing myself to rest and conserve as much energy as possible in preparation. (Does that really work?  Well at least I won't start crashed/relapsed).

There is travel coming up, as well as a conference here in town where I am presenting (it's short) but really hoping to manage to take in a few sessions as well. I have been looking forward to this for over 9 months.  As I'm mostly too ill to travel, I don't get to attend conferences very often.  The last two I was scheduled to attend, I had to cancel due to health issues.