Cognitive Fog and another Disappointment.

When I first became ill with mono, that very first first week, I felt like my brain was swollen. It wasn't a headache, it was simply overwhelming pressure.  The sensation was potent and constant.  I also had what is commonly known as brain fog.  I used to describe it like having cellophane wrapped around my brain. I could think, but I had to think through this layer of pressure and filminess.  My thoughts took longer to form, words were difficult to find, information took longer to process.

Interestingly, I see my father who has mild cognitive impairment struggling with these same things.

While at first these cognitive issues were ever present, slowly over time I had periods where they waned.  After a few years, these periods of relief lasted longer, and eventually my cognitive issues became infrequent.  How else could I have pursued a masters and then a PhD mostly from bed?

Now, I only have problems if I drive, or am crashed.  However, right now I am having problems, real problems.  I think it's because I work my brain hard for hours everyday.  I read, write, process, teach, assess.  The last few days it's not that I can't think, but it's taking so much time to process, to find a word, to write a paragraph.  If I push through I even start to get spotty vision (like right now).  I need to rest my brain...I have three weeks to go, I hope I can manage to facilitate the rest of this course well.

As to the disappointment the community (M.E.) faces this week, and that I mention in the post title - the phase three Rituximab (drug) trial from Norway is negative.  That the drug made it to phase three was both hopeful and validating for many of us.  Unfortunately, once again, we are left without even the promise of treatment in the far flung future (finding and testing a drug takes mass amounts of funding, which M.E. doesn't get, and then years and years to go through trials once a candidate is identified).

If Rituximab had proved effective not only would there be an option for treatment (someday), but it would have highlighted possible specific mechanisms and pathways of the disease and validated it's biologic immune dysfunction within the medical community.

Anyways, given how hard it is to write, that's all I got today.  Sorry about my absence lately, part time work is all I can manage. Overall my health has remained pretty steady (outside the brain fog) which is something to be thankful for.  I hope you are all AWAP.

Watch Unrest.

My life is busy.  Too busy.

Lately, I often feel overwhelmed. I'm happy for my work (the online course), I'm happy that I have my father in my life, but I'm also sick with a disabling chronic illness. I wish there was a happy medium.

I'm doing too much to the point where I collapse in mental and physical fatigue almost daily. (That said, I haven't relapsed). But given how much I've stressed and stretched myself this past 12 months, I decided not to take on any work this winter, so there is a light at the end of the tunnel. I just need to power-through and try to enjoy the next 6 weeks of 'busy' as best I can.

Then it's back to more rest/time but also the accompanying poverty that goes with it, not to mention the issues with low self esteem that plague me when I'm not working.

But I'll get to the point. I'm writing this post for a reason. I watched the documentary UNREST.  If you haven't watched it, watch it.

If you are a non M.E. friend, I think you will see pieces of my story in there.  The time early on where I was so sick, dizzy, weak and exhausted you watched me lay down in a dog bed at our friend's party.  The time you had to help me walk because my legs gave out after I thought I was well enough to go for a walk/hike.  The times early on where I had to crawl to the bathroom (although I don't think anyone saw me those times), or where I couldn't make it up a set of stairs.

The movie's not completely overwhelming, I thought it would be; it wasn't.  It's about M.E. but it's also art. It's a story that needs to be told and it's told well. There are small moments of beauty in it.  There are even a few moments of humour.

On the other hand, it's not a "light" watch.  It's about the lives of people who suffer severe illness and yet have been mostly dismissed by doctors and society. I cried.

I felt jealous at times of the support Brea obviously has (both personal and medical). But then I guess she wouldn't have been able to make the movie had she not had this support.

I'm going to buy a bunch of DVDs and give them to friends...  It's such an important story and it's done so well.

Have you seen it? What did you think?

It could be worse....

While I come here to Bit*& and complain, to share my struggles about how awful and frustrating it is to be disabled by a mostly invisible illness, I also acknowledge that as M.E. goes, I am only moderate.  My life could be even more restricted, even smaller.  I've experienced this during my worst relapses.

These days, I am out of bed or off the couch for sometimes 3 or occasionally 4?! hours a day, I leave the house multiple times a week much of this due to my father - appointments, errands, needing to run over to his place etc., and now that he's lost his licence there is the driving! It's not a lot of driving but for someone who crashes from driving, it sometimes feels like self abuse.

While I 'manage' these outings, (in the 1-2 hr range) they are often crash-making. Between my online course, day to day living, and being my dad's administrator, I find the stress often builds to anxiety levels.  Were I not doing so much, I'm guessing I would alternatively feel isolated and bored.

Instead, I am busy, often pushing through horrid sick symptoms (lightheadedness, brown-outs, malaise fluy ichiness, air hunger, and colossal weakness and fatigue) while trying to work, errand etc. I find myself feeling desperate to the point of wanting to just get my life, this misery, over with. I sometimes wonder if any "healthy" would put themselves through this in order to maintain some functioning in the world. Still, when I consider the alternative, I still choose to push through (e.g. I love feeling like I have a job, I love being there for my dad).

While my life is about constant physical suffering, worse lately because I'm so busy, I have friends with M.E. who are much worse off, some of them completely home-bound, two of them completely bed bound.  Despite the general lack of awareness of how devastating an illness this is, that it's not about 'being tired', we are a certainly a disabled bunch.

I came across this today and kept nodding my head.

https://www.washingtonpost.com/national/health-science/i-live-with-disabling-illness-and-chronic-fatigue-it-has-taught-me-to-ask-for-help/2017/09/22/513a0cee-972b-11e7-b569-3360011663b4_story.html?utm_term=.2fd425d883e9#comments

This woman tells her story and what it takes when you are chronically ill  to sometimes ask for help.  I love the analogy of how it's like drinking mud from a puddle lol!!!

Asking for help when you're ill, in my experience, is awful.  You expose yourself, make yourself vulnerable.  You put yourself at the mercy of your friend/family member etc.  And while these folks might offer "how can I help? or let me know how I can help?" from time to time, it's never anything specific throwing it right back into the disabled/sick person's court. The author encourages the sick person to be specific, but I think it goes both ways.  It's the same when someone is grieving after a loss, the "advice" out there these days is that it helps a lot if you want to help, if you can offer something specific.

I very rarely get offers for help these days. Partly, I don't really have any good friends besides my housemate in this town. My housemate/friend S. often helps doing little things like letting the dog out to pee when I'm crashed on the couch, saving me those extra steps. While she also does some bigger things (shovels snow, mows the lawn, buys groceries) sometimes it's those little things that mean the most. My dad very sweetly offers to help from time to time, but now that he can't drive there's little he can do.

I like the statement/acknowledgment in the article about how adult life is hard.  Sometimes it seems like it's pretty much drudgery whether you are sick or not.

This week is a reading week (break) at the U, so I was able to get out in the canoe for the second time? this year. The fall colours were amazing.  Thankfully (for me) there are the occasional moments of beauty and joy like these.  While I was out I felt like my heart/spirit was soaring. Although given the mercilessness of M.E., I am still paying.

Do you ever ask for help?

p.s. for those with M.E. who have a chance to read the article I shared a link to above, you will be happy/excited to know that in the comments someone posted an easy 'cure' for M.E. - finally (note my sarcasm).

I'm exhausted

My life is exhausting.

Being sick for 15 years with no treatment options (aka hope or medical support) is exhausting. Taking care of my octogenarian father while ill is exhausting. Teaching (even online) while ill is exhausting. POTs is exhausting. Talking, walking, doing the dishes, taking a bath, figuring out what to eat, driving my dad on errands...it's all exhausting.

I'm exhausted.

Battery Drained

I'm in bed trying to rest enough to recharge my battery.  I just read a fellow sufferer's analogy that having M.E. is like having a battery (e.g. capacity for energy) that only ever charges to 20%.  Really that's pretty much it although maybe mine hits 30% sometimes?

Anyways, right now I'm at -10% so I'm trying to rest enough to get some charge back. Last night I was so weak I couldn't stand up for more than seconds without my legs giving out and I couldn't comb my hair.  I was so weak my arm muscles were shaking/tremoring typing. Pretty bad eh?

Today I'm maybe a tad better but feel awful and fluy and viral and still quite weak.  Hence it's 2pm and I'm still in bed in pjs.

I've been working online at my online course and doing errand/appointments with my dad.  This has been enough to tax me past my limits.  And despite the fact that I'm not sick on purpose I still lay here feeling disgusted and disappointed with myself.

Feelings of Mortality

Sometimes life seems to go by so slowly.  It's like I have all the time in the world: for my health to improve so I can do more, to get ready for my fall course, to spend time with family or important friends, to go on another camping trip, or even for another summer swim.

After I got back from camping, the next weekend was the big dog event in the city.  We went for one morning and had a wonderful time.

That night I heard my aunt Laura (my dad's sister) had taken a turn for the worse. Monday morning, Aug. 21st she died. Just when I thought I had a week or two with nothing big scheduled I was in a quandary.  I had always planned to go the the funeral- she was like my grandma.  She put me up for 6 mo during the first years I was ill and had no where to go.  She never had kids, so was "adopted" by a few families of my cousins.  Growing up she was there every Birthday and holiday I can remember. She lived down the road so I saw her often.  In fact, she used to take me out driving when I was struggling to learn to drive as a young adult.  The memories of times with her are endless....

So I did end up taking my dad down for the funeral. I won't go into details, but one of my brothers lives in the same city and was turning fifty that week so we got to see him, and one of my other brothers drove out from Ottawa. Of course even the two hour flight and all the details to get my dad and I there kicked my butt.

However, it was cathartic to see so many of my cousins and to see 2 of my brothers and to sit and talk about my aunt, sharing memories.  She was ready to go, she had been saying so for quite a few years.  She had a strong faith that death isn't the end and it was time - she would have turned 90 in October.

Being down in the community where I grew up, brought back a lot of memories of my time taking care of my mom.  I feel like in a way I was doing more grieving for my mom than my Aunt. Not only that, but the news about my Aunt came within a day of the anniversary of hearing my mom was in the hospital and flying down to help her and my dad two years ago.

So here I am back home recovering.

Not surprisingly the M.E. seems to have taken a turn for the worse.  I have definitely been pushing things this summer.  My throat is sore pretty much all the time (in fact I thought I had strept the night of the funeral is was so painful and swollen).  My axillary lymph nodes (arm pit ones) are painful enough that my clothing hurts.  Not to mention the fatigue, weakness, and dizzy/lightheaded spells.

I feel like (partly because I've been so busy) that life is flying by too quickly.  That summer's almost over and I didn't get anything accomplished.

In the bigger scheme of things, I feel that here I am in the second half of my forties and I've missed most my adulthood lying in bed.  There's a kind of panic that I need to live as much life as I can despite M.E. On the other hand, my hands are tied to a degree because when I attempt to push it to do more stuff, I get sicker.  I guess there are just no words to explain/describe how sick activity makes me (makes all of us with M.E.).  For me, it's very much like a virus made worse by activity, but a virus that completely depletes my body's ability to produce energy.

To boot, my dad did his driving assessment last week and they gave him a clear fail.  They said he made multiple errors and is no longer safe to drive.  He is definitely angry and grieving this news.  Technically he still has his licence, the report has been sent to the Dr. I told him that this week he could "carefully" drive just around the neighbourhood.

Unfortunately for me this wrench means I will have to drive him even more than I already have been and what sucks is that driving is one of the key activities that causes me to crash.  This is unfortunate.  However, mostly I'm feeling empathy and sadness for my father who now has to give up another piece of his life, his independence.  My mom used to say "getting old is no fun" - clearly this seems to be the case.

I wish life would slow down.  I feel like in the blink of an eye it will be my time to go, to die.

My native plants garden is attracting load of bees this year.