Short Update

There really isn't much to report on the M.E. or POTS front. I do think that overall I am improved from 10 years ago. Very minor improvement, but I'll take it. 

Why am I improved? Can I pinpoint anything? I wonder if it's partly just age and time. In fact, I wonder if I will continue to improve once I hit menopause and my hormone profile changes.

While I would never recommend exercise to anyone with M.E. (it can make things work and cause permanent decline), I do think my regime of gentle walking when I can manage it has helped.

That said, I still have lots of ups and downs, many crash days lately. I'm crashed today from walking too much yesterday. 

As December looms, my mood plummets. I'm trying to get outside for lots of air and sunshine; I try to distract myself as best I can without crashing. But the waning light and the memories of a year ago seem to seep in through the cracks of my resolve. 

I am missing my Dad and thinking of just over a year ago when he ended up in the hospital for a final time. Likewise, 5 years ago (which sometimes seems like yesterday) my mom passed around this time of year (Dec. 2nd). Up until this year my recent life has revolved around their care. I've struggled to find meaning and love in my life since. I am still teaching online part time which sometimes helps. I also spend a lot of time training and hanging out with my dogs.

Here are some photos from the last couple months.

Been Away a While

 Hi Readers (if there are any of you left). 

I apologize, I basically ditched this blog. 

I was going through some grief stuff having lost my dad, then I worked more than usual in the summer. Then add Covid-19 to the mix and I just had no inspiration or energy. Any energy I have had has been spent outside whenever I can (I worked hard training my younger dog in back yard agility this spring and summer).

I'm going to make this short. 

I had a big birthday this year but due to Covid-19 both my camping trips were cancelled. I did get out one night with my roommate/friend on my actual birthday which was amazing. I also ended up doing (and surviving) two solo wilderness trips with the dogs. One was four nights, the other five nights.

Fall is now here and I've had a bad patch M.E. wise. I believe I continue to be improved overall, but it doesn't always feel that way. Today the M.E. is heavy in my chest, making it ache to breathe. And I feel heavy and exhausted, the sick kind of exhausted. 

I'm also dealing with on and off anxiety these days. Not sure what that's all about, but the only way I find to curb it is going outside. Which can work if I'm not too sick and exhausted and/or if the weather is agreeing.

I took the dogs for a walk in the woods the other day. Here are a few photos.

The Restorative Power of Nature

As you know, I'm having a really rough time at present. My chronic illnesses have been flaring, Covid-19 restrictions have led to increased feelings of loneliness (and worthlessness), and I'm still struggling with the loss of my dad. However, any time I manage to get out for a short walk in nature it helps. Sometimes it helps a little, sometimes a lot, but with every nature outing, I notice a perceptible shift in my mood.

Today, I decided to make time to head out for an hour to one of my favourite local trails. It's pretty unknown, it's Monday (so few if any users), and a section of the trail is flooded at present so I almost never see anyone else there.

Right now the final patches of snow are melting, and the moss is a vibrant green. We (the dogs and I) don't just walk when we go—we play fetch, they swim in the river, we explore, and I often find things to examine or spend some time just sitting and soaking it all in, breathing the fresh air.

Forest Trail

A Mossy Blanket

Vestiges of Winter

No, it's not a beaver, it's a Ripple 

The Loneliness of Chronic Illness Exacerbated by Covid

It's been over a month since things have been locked down due to Covid. In some ways, my life hasn't changed much at all. I finished up my course (it was hard, like pulling teeth every day). However, since finishing a week and 1/2 a go, I've had trouble slowing down, appreciating my chance to rest and recharge. I've been plagued by bouts of anxiety.

If I try to relax, I start to worry about everything I 'should' do before my next course in July. There's also some Dad estate related tasks pending. This week I got together all the tax stuff and reorganized his file box.

The last two days have been our first warmer days. The first one I went out and spent a lot of time in the yard. I got a little sun, and the next day was crashed/flared.  This happens to me whenever I get too much sun, even if I'm mostly sitting. Of course I went down a research hole (again) and it's common in a number of autoimmune conditions to have a flare from sun exposure. And since POTS is likely autoimmune and M.E. has immune components, I guess it isn't surprising I flare after sun exposure.

My house has a lot of issues so since my Dad passed, I've been seriously thinking of moving. But all the 'to dos' involved have me stressed. Alternatively, if I stay here, I'm too sick to do any of the fixing/maintenance/upkeep.  For example, cracked leaky foundation, outdoor drainage issues, floors that need redoing, water damaged ceiling, unfinished walls and ceilings, painting, electrical, cupboards, collapsing patio, rotting molding shed, precarious falling down fence, mold in the walls, lack of insulation etc. It's all just too much.

But figuring out the whole process of moving and finding something smaller, more doable/low maintenance all on my own is also completely overwhelming. I've played with the idea of selling my house and taking that money and my small chunk of inheritance and having someone build a well-insulated small/tiny cabin on some land. But land near town isn't exactly cheap, it would have to have a well/water already. There are just a million details that would have to be figured out in order to sell one house and build another...all on my own, while ill. I'm having trouble coping with just the small tasks on my plate.

Additionally I think, what happens when I'm living out of town and sick? How do I get groceries on a bad day? How do I cope with the isolation, knowing I have no friends and/or family near by? My roommate isn't interested in moving with me if I move (I think she's ready to move on as well), and she's probably the only person I'd consider a close friend in the entire region.

I knew I'd feel a gap and loss and loneliness once my dad was gone when there was no-one left to care for. I had his company/friendship almost daily for over 4 years. While grieving this loss, Covid restrictions have now isolated me further from everyone but my roommate (who isn't here a whole lot).  It's brought to light my lack of social support/community. But where could I move that would be any better? No where. I can't think of anywhere.

While it's a dark thought, it would be a relief to have Covid (or something) take me. I really don't feel like I want to stick around anymore. I lived a decent life despite almost 20 years of chronic illness. I really don't want to face another 20 years sick, poor, and mostly isolated.

February Blues

I think I have the February blues. Except it's March. My mom (who struggled with depression) always said this was the toughest time of year for her. For me, it's always been December with the low light and short days. I've also now lost 3 family members in December.

So after my last iron infusion in January, as you may know from reading my last blog post, I ended up going to emergency with severe nausea and stomach upset. It took almost 4 weeks to recover. I lost 10lbs. I'm convinced it was a reaction to the iron infusion (and some of my tests did indicate I got too much iron).

Right now I'm in an unrelated flare/relapse, the M.E. kind. I suspect it's due to my body fighting something. Often when there's a cold or flu going round instead of catching it, I get an M.E./POTS flare instead. Which honestly is worse. I'd rather have a cold.

I am so unmotivated today. I just want to lay in bed again all day. Since getting my puppy just over a year ago, on the whole I've maintained a higher level of activity then before puppy (both with my dad's care, part-time work, and a puppy). While it's been super hard, one of the good things is I've managed to walk or take the dogs swimming fairly often. The time spent in nature, outdoors has been so good for me mentally and spiritually even if not physically (although I'd argue that it's helped physically too in some ways).

Right now I'm too crashed to walk, and Ripple has a torn dew claw. Thankfully this is nothing serious, but she keeps re-injuring it. Given her energy level, she can be a bit much when she doesn't get her daily exercise. We are both missing it (and likely my senior dog is too). I am hoping and praying this relapse/crash is short lived. How is it possible to be this weak and sick with no recourse??! It's mind boggling. And in case you're wondering - "I look great". Sigh.

Trip to Emergency - history repeating itself

I have now gone to emergency twice in my adult life. Both times since M.E., and both times for gastrointestinal distress.

Long story short, after my last iron infusion, I developed what felt like a stomach flu. Seven days later while some of the symptoms were improving (diarrhea) the grumbling intestinal distress, burning like pain, and severe nausea were if anything, worse. I had an appointment in a week, but didn't think I could take another full week of nausea.

For a Monday, when I got there, emergency didn't seem too busy but it quickly filled up. (One nurse told me that ours is the busiest emergency department in Canada. My suspicion is this is partly due to lack of family Drs. Even if you have one, sometimes appointments are scheduled weeks out). I was in the waiting room 3 hours sitting up with waves of severe nausea. Just when I was about to call it quits and go home, they called me in. I saw a Dr. for seconds, she ordered tests, a few pills, and IV fluids.

Four hours later (7 total) I was released with no clear idea of what was wrong. They suspected my ulcers were returning and gave me a prescription for a PPI. They told me that they don't do iron studies at the emergency lab so they had no idea if this was infusion or iron related.

The last drug they tried with me before I left was plain old gravol, an anti-nausea pill. While it didn't help much with the nausea, on the positive, it's sedative properties meant when I got home, I dozed off on the couch. Once I dragged myself into bed I passed out completely.

Then I had a night full of drugged dreams, some of which included driving around with my dad.  These dreams, and the whole experience made me miss him even more. Partly because we spent too many hours at that emergency together over the last year (I don't miss those times). Partly, because the lack of his presence wasn't lost on me as I sat there alone. Most people had kids, parents, partners, friends with them. I woke up this morning feeling desperately lonely for my dad. Also aware of my aloneness in the world.

That said, as I write this I'm surrounded by the warmth and love of golden retrievers, and that is something.

Grief and Loss

I've lost people I've loved before. My sister died when I was a teen. When I was in University I lost an aunt I was close to. More recently, I lost my mom and my aunt Laura. Death is part of being mortal, thus loss is something we'll all face and have to move through.

In some ways loosing my dad feels like the hardest hit yet.

Why has this been so tough for me? He was 89 and quite sick the last few months.

I think there are quite a few reasons. For one, I saw him almost every day the last four years. I miss his presence acutely in a way I didn't with some of the other losses I've faced. There is also the fact that we were close. I also think the fact that I was his care-giver has a role to play. This results in me sometimes feeling relief, but also a desperate kind of emptiness. To nurture someone for years and then have them gone leaves a gaping hole.

Taking care of my dad shaped my recent life and gave it purpose. When you have a child you nurture and care for someone, you put all kinds of energy into their well being, and you hold in your heart hope for their future, that all your time and love will hold them up in some way. But when you nurture someone who's near the end of life, what do you hope for? I spent hours upon hours, days upon days, months upon months with him, and now it's over. And to what end?

Those of us with disabling chronic illness know all about loss. We face monumental loss when we get sick, one that a mostly healthy person could never understand. If the chronic illness is disabling, we lose our jobs, perhaps relationships, and often our sense of identity - we can no longer do the things we once did.  I went through this huge loss in my early 30s. While I've been able to build a semblance of a life, I still feel the loss of a healthy body in small or large ways almost every day. (Too sick to go to a movie, a restaurant, a party, not being able to go for a run, or a hike, not being able to travel,  forced poverty or near poverty because I work minimally.) Basically, being disabled means having to deny ourselves almost everything that once brought us joy/pleasure - which is a constant process of loss.

Where am I going with this? Honestly, I guess I'm just kind of rambling.

Am I doing okay? Not really. I feel desperately alone in the world. I'm working part-time online again this semester and trying to motivate myself to so much as look at the screen, it's like torture. It all seems so pointless.

I had an iron infusion on Friday and it crashed me so hard that Saturday I barely moved (and when I did every cell ached). Thankfully I only have one infusion left in this round.