Time for a Change?

Warning! heavy topics discussed below:

I'm debating making some big changes.  More than once this past year, I've wanted my life to end.  This is the morbid truth. My life is often pretty miserable (I feel so ill, weak, and dizzy), and I also feel very alone, isolated. What is the purpose of keeping on? How does my life add anything to this wide world? Who enjoys my company, especially when my energy, stamina, and symptoms effect my ability to be social?

When I returned from visiting my brother and his family, the depression hit hard again.  Outside of my housemate/friend, there's not a single person who cared or noticed I'd been away.  The dog walker maybe?  There wasn't a single missed phone message, or a single piece of mail waiting for me.

How purposeless my life seems.  Also, adding another layer, I've had severe insomnia since the trip.  Worse than I can remember having in my whole life.  I go to bed exhausted and doze a little, but mostly lay there for hours and hours, sometimes gaining only two or three disrupted hours of sleep a night.  At first I think it was due to the three hour time change.  But it's been almost 2 weeks. My usual sleep aids are doing little.  I've also added melatonin to the mix, to no avail.

This house is also weighing on me.  While in some ways I love having a home, (and it's a pretty cute one) there are many problems (some structural) that need to be addressed.  I have no extra income to address them, and I don't have the health to manage even some of the smallest tasks that somehow I thought when I bought the house, that I would manage.

So anyways, something flipped inside of me this week and I've started considering another option.  Options are something that are hard to come by when you're ill to the point of being unable to do a lot of stuff.

My disability income is contingent, for example, of me living in this province.  Since I spent the decade before getting ill out of the province, I have very limited community here.

However, I started questioning this week, why stay here in this city?  What other options could I consider? Is there somewhere else I could go and make a home for myself, somewhere where I might feel less isolated? Or is there a way for me to feel less isolated and disconnected here?

Also, could I be less burdened by a fixer upper not to mention all the usual maintenance a home needs? Could I find something much smaller and low maintenance, for example? (e.g. I've been reading a book about a tiny house, not that I necessarily want a tiny house, it just encouraged me to think outside the box).

I don't have an answer yet, but I've tried to put these questions out into the universe.  Is there a way to stop feeling so helpless and dependent (on the government, on my housemate) just wishing it would all end? Am I too sick and too old and too useless to find a life that's a little less lonely? Yes, I realize I'm very very lucky to have the security of a home to live in, and disability income to help me exist.  But even this is tinged with guilt (receiving social assistance) every time I think about it.

I feel stuck in a rut.  I want to start thinking in a less fatalistic way.  There's all sorts I can't control, most frustratingly, my health.  But what can I control? What steps could I take to deal with some of the worst burdens in my life (basically lack of employment and income, a home that's too high maintenance for someone who's ill, and most importantly, social isolation).

Recovering, or trying to.

Having travelled, I have no idea how long it will take me to recover.  On the one hand, I could be in a lot worse shape right now (I'm not as relapsed as I was in February). On the other hand, while I expected it, it is nonetheless frustrating to feel so ill and weak/tired.

I actually had a bit of a break-down this week.  I think a lot of it had to do with post-travel fatigue and lack of proper sleep.  But I'm also just so tired of being ill and unable to function.  There are so many things each day I either want to do, or attempt to do. I get so frustrated with my complete lack of energy/stamina or strength. Also, I'm lonely.  M.E. is so isolating.  I only have one friend in this city, and she has her own busy life. I just am not well enough to go out and meet people, it's not like I have a job where there's social contact.  I wonder sometimes what I'm doing here? But I don't know where else I could go?

As for recovery, I decided I would wait a week after returning home to start working on my dissertation again.  I have managed to get approval from my program for a medical leave this summer.  I still have to get approval from the university itself, and will find out next week.  If I'm approved, this doesn't mean I won't continue to plug away, it will just take the pressure off a little.

I still seem to have jet lag. I'm up until 1 or 2 am, then I sleep in, but I'm not getting very good sleep, or the 9 hours I seem to function best on.  If I get less than 9 hours, the M.E. seems to get worse.

Here's a print I created before I left on my trip, I just had to print the final layer, or key block.
Tell me which version you like better, the lighter one, or the darker/bolder one.

I'm also posting a few photos from around this time last year when the ice was going out on Lake Superior.  It might be hard to see, but they partly inspired the print.

As for the poll on the right, it seems that most of us with M.E. have some form of OI, and POTS is the more common one.

I was super lightheaded a few minutes ago and took my BP and HR.  It was 98/70 and 133.  I should maybe give the Florinef another go, it was the best drug for me although it caused significant pulsate tinnitus. I did start a beta blocker, but it made me super super lethargic and fatigued, more than usual if that's possible.

Travel, it's super hard.

Sorry I've been absent, I travelled to see family (my brother and his family).  As you might guess, it was really hard, although great to see them.  I stayed long enough that I had time to recover there before the return trip (the travel days were brutal).  While I'm glad I went (so far) I doubt I'll be keen to do it again for a long while.

I managed two outings while there, and spent a lot of time in bed resting, just like I do here. And I had to navigate stairs multiple times of day (the guest room was upstairs), which is more draining.  It would have been imposible during my relapse.  Now that I'm home, I have no idea how long it will take me to recover.

I sat beside a woman with MS on my last flight home and we commiserated about traveling and visiting while ill.  She had what sounded like similar fatigue, (I mean it was really similar, I've never heard someone with an illness outside M.E. describe fatigue that is so similar). We could relate. I very rarely disclose, but I shared that I had an immune disease triggered by severe mono.  She had had to sleep on the couch at her daughters rather than a spare bed to avoid having to do stairs so often during her visit.

Once I recover a bit, I will write more. But the area where my brother and his family moved, is incredibly beautiful.  I spent a lot of time (when I wasn't in bed or visiting) sitting on their little deck with my feet up looking out at the lake in the valley and the mountains beyond.

Here's a photo from one of the outings.