An interesting crash trigger

So on fathers day I took my dad for a one hour sailing tour of the harbour.  While we were out he was clearly nervous as it was in an actual sailing boat (a pretty large one).  I thought he'd have the time of his life as one of his main hobbies since he moved here is going to a nearby overlook and watching the ships come and go.  While nervous during the tour, in retrospect I think he did enjoy his gift.  As for me, I absolutely loved it!!!  It felt so cool and adventurous to do something like that rather than the usual laying in bed and/or housebound.  To be out on the water on a beautiful day was such a treat.  I did get a little dizzy from the motion and some mild sensory overload, but less so than in a store with fluorescent lights. We got up close to a "salty" - an ocean going freighter - and we saw pelicans and cormorants etc.

However, the next day I was not only crashed but burnt! I wore sunscreen but didn't think to do my knees and I was wearing shorts.  I had 5 horrible days in bed til I was back to my normal level of crap.

Then this week I had a friend visit, but I was very very careful activity wise not to over-do.  I did sit out on the patio quite a bit in my recliner, and one day as I was resting there I got burnt.  Then yesterday I was so crashed, I really felt as if I was dying (and I still feel horrible today).  My roommate pointed out both crashes weren't the 2 day effect of activity that I can usually count on (if I do too much I crash 36-48 hours later), but rather perhaps as a result of getting too much sun?!! Okay, how can getting too much sun cause an immune reaction?  It makes no sense...but it fit.  So I posted something on my M.E. group and sure enough, many others have had a relapse/crash from sun exposure.  An immune/disease reaction from sun? From enjoying the sun!!!

And to add to the injustice of it all, I've been resting up all week so I could attend a dog event I've been looking forward to for 6 months!!!! But I am absolutely too ill to do anything, and by no means well enough to leave the house.  The event runs three days, I'm hoping they will let me shift my registration from Friday to Saturday or Sunday on the off chance I pull out of the relapse/crash in time.

I was so sick yesterday I was just crying with the overwhelming flu and weakness stuff.  I made the mistake of wasting my energy to go see my Nurse Practitioner (I had a ride).  There is nothing she can do for the M.E which just makes me so so so mad sometimes.  Not at her, but at the fact that WTF!!! How can those of us with this disease be so ill with just no one or nothing that can help in anyway?

She did give me a prescription for a PPI again as I've been throwing up a lot, not tolerating most foods.  It's a combo of GERD and POTS and just M.E. I think.  She also thinks my stomach ulcers are likely back. I also managed to faint in the garden for the first time in 10 months bending over to pick a weed.  She said we could get me a new cardiologist (mine retired) but the one I had tried me on most the drugs for POTS and while nice and not dismissive, he really didn't help me much.

So that's my life at present...pretty horrible, and at the moment I feel as if I'm about to puke which lately has been 12 out of the 14 hours that I'm awake.  It could be worse, I'm not nauseous, just constantly feel like my food will not stay down (and it doesn't a lot of the time).

As for the issue of a better understanding of M.E. in the general public, a friend (non M.E.) posted an article today and I really like most things about it. For one, while they talk about the study's findings they don't say it's the disease cause as in the case of many of these articles, they speculate it could just as well be the result of the disease process.  They also discuss other scientific findings that may be part of the puzzle.  They also don't say in the title "M.E. no longer seen as psychological" as most media related articles seem to feel the need to do despite over 4000 studies showing abnormalities and 25 years of research.  If you need to feel hopeful about recent science, this is a good article to read: http://www.sciencealert.com/researchers-find-chronic-fatigue-syndrome-markers-in-gut-bacteria

Crash Days

Sorry I've been absent so much.  I've been having a lot of crash days.  When I do have a decent day or two, I over do it then have 3 or 4 more crash days where I want to crawl into a hole and die.

So, this leaves me with little to share.  I am looking forward to my class starting as I'm hoping it won't be too difficult to monitor and it will provide a distraction that is low-energy.  Also, I'm so sick of being desperately poor I can't even put it into words.

How are my readers doing these days? Leave a comment if you want.  I hope for those in the Northern Hemisphere you are are least enjoying some outdoor time.

Grieving and Graduating

It's six months ago today that my mom died.  In some ways it feels a life time away.  For the first few months I counted everything - "10 days since I've talked with her" "two weeks since I sat beside her bed and visited" etc.  For a while I thought I would never stop crying - bouts where I was insomnic and up late, turning to my iPad to distract myself from crying continually, thinking about her, exhausting myself.

Now it feels less potent, she feels further away.  This is a double edged sword.  I feel sad about how quickly time has passed because I am further away from her, from our time together.  On the other hand, I don't miss the constant emotional pain and crying.

This past weekend I had guests come in, my brother and niece and my good friend A. and her son A. to help me celebrate my convocation.  I have never attended a ceremony for a degree.  For my bachelor degrees, I was already across the country by the time the ceremony took place, and for my masters I already had M.E.  I knew it would be a huge effort and drain to try to attend.

For my PhD I did want to attend, partly because my mom so wanted to see me walk across the stage, and partly because I've missed out on so many milestones and rights of passage being ill, that I wanted to find a way to do this one.

Friday I was so sick, I was sure I'd have to bail, but Saturday I felt a tad better so I toughed it out.  My friends were just amazing in helping me get there and get dressed and I'd set up accommodations with the university ahead of time.  There is just no way to accommodate the M.E stuff (light and noise sensitivity, weakness, flu and body ache, dizziness) however, I did tell them I had a fainting disorder and could not stand in line or in one place for long.

As it turns out, I was slotted first to graduate. PhDs go first, I was the only PhD from education who attended, so voila.  What makes this even cooler is they offered to walk me backstage beforehand and then I could slip out to my seat when everyone was assembled, or I could walk in with the procession (hundreds of people - graduating students and faculty).  There is no way I would have chosen to do the procession (way way too much standing) except since I was first, I figured either way I had to walk down to the stage.  So, I LEAD the procession!!! (well I was behind the marshals, but still pretty cool).

Then everyone stands at their seat til all are assembled so I slipped behind the stage to sit.  Once the procession sat, there were introductions, three short speeches and then I graduated.  After I walked across the stage where they hooded me and presented me with a medal I walked around the back where an attendant met me, then instead of going back to my seat for 2 hours as 100s of others graduated, I was lead to a back room.  I could watch more ceremony on a screen with my feet up until my friends found me.  We actually all went outside, took a few photos and headed home.  Because everyone else was still stuck indoors, we had a beautiful spot to take pictures all to ourselves.

I took some time to rest then we had a meal and gf cake to celebrate.  I was so wiped out I spent a good hour that night vomiting.  This seems to happen when I overdo, as it's the second time in two weeks where effort is followed by vomiting.  It is a commonly cited symptom of POTs and I'm thinking they definitely seem to be related for me.  Too much standing or exertion = intestinal reaction.

Anyways, not surprisingly I'm in pretty bad shape now, 3 crash days, I'm too weak to do much more than lay in bed or on the couch, and home-bound.  But that is definitely to be expected.  I don't want to post photos of friends and family to protect privacy, but here's one of my dad and me....also a few of my cool robes.  The PhD hood (the behind photo) is big and billowing, the hat is ridiculous in an awesome way and dates back to the Tudor times...and the robe is more the British style, it's open at the front.

A view of the stage

Is it real gold?