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).