Starting over

I’ve been struggling.  A lot.  2016 sucked ass. It started out OK, if busy.  My little team at work (all two of us) did 7 formal engagement sessions across BC at the end of 2015 into 2016. Some went well, some not so well. But ultimately it was 2 months of travel and long days without enough recovery time.  By the time I got a week off in March, I was really having a hard time.  By the time May came along I was at the doctor telling him I was really crashing.  And by the end of June, I was ready to admit I needed a stretch of time off of work. I was walking slowly because each step felt like my legs would give out. I hadn’t realized just how bad I’d gotten.  It turned i would be off work for 3 1/2 months.  And 9 months after I went off I’m still not back to full time. 

It was so hard.  I spent the first week off work running around doing errands. Continuing to push myself through the fatigue. I went to a friends wedding and stealthily took a long umbrella, ostensibly as shade, but really so I could use it as a crutch walking to and from the site. After the first week off I slowed down and let the crash come.  I stopped fighting it.  And boy did it come.  

I spent the summer sleeping whenever I needed to. My only job was to eat well (which would be a first) and resting.  After about a month, I added in some walking.  And then it felt so good to be moving that I overdid it.  You know, walking slowly for 20 min kind of overdoing it.  Ugh. 

By the time I started back to work in early October, I had got to 30 min of walking a day, usually in two chunks. I could do more, but I would pay for it dearly in the following week with what the call post exertional malaise. But I still did more sometimes, because I’d started feeling like I could be social again.  And being social usually involves either food or drink or exercise. So sometimes I overdid it. 

I ramped up at work too fast, got back to full time and then had to back off again.  And now, 3 months later I’ve settled into what I think is my new normal. 

And it’s frustrating. 

My body physically seems to be stable.  I’m getting migraines and that’s a pain, but I’ll keep dealing with that.  But mentally….it’s hard.  I spent my 20s dealing with an already reduced quality of life, but I managed. I settled into things I could do.

Now I’ve had to reset again.  Before, I grieved the life I thought I’d have, but I was OK.  More recently, I’m finding it very hard to readjust a second time. This time, all I can seem to focus on is how unfair it is.  Which is really not helpful, i know this. 

In my 20s and early 30s I figure I was operating at about 60% of “normal”. Not bad for MECFS. And now I figure I’m at about 60% of my previous normal. So, i can probably work full time which means I can pay my mortgage.  But there’s very little left over.  Less than I had before last year, and unlikely to get better.  And no I’m not being pessimistic here.  It just isn’t. 

So how does one cope with that? I haven’t figured it out yet.  I just know I’m ridiculously annoying to be around because I cannot seem to see the upside. And I’ve thought maybe it’s just time that I need.  But it’s more than that. 

I need some space to grieve, and then I need….something I wish I could put my finger on. But can’t.  Yet.  But I think writing about it could help. 

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Slowly but surely

I’ve been putting off posting, because honestly I haven’t felt like I’ve had anything to say. I’ve been off work for over a month now, and the days seem to pass by with zero fanfare and very few milestones. It often feels like I’m standing still.

But I’m not.

The first few weeks were really hard. I didn’t do much other than errands for the first week. And that was too much. So I pulled way back and did next to nothing. I got up, I watched TV, I sat on my deck and read my book, and I went to bed. Then what happened? I couldn’t sleep.

Fer frick sake, that was the one thing I could always do well. Now I’m up until 2am reading and not getting sleepy. I’m tired, but not sleepy. Yes, there’s a difference.

The first week I was off I just tried to eat meals. I cooked. It was fun. And then the next week I started taking gluten out of my diet. I did well for a week, then faltered when a giant plate of pasta called my name. The next day I felt like crap – I’m not silly enough to think there was a causation there. Too easy.

And when I started having trouble sleeping, I struggled with what to do. I went to a sleep doctor who suggested I exercise. Yeeeeah. But ultimately, I gave it a few days and then started moving. Very very small steps – 15 minutes on a stationary sitting bike going veeerrrryy slowly.

baymax

(PS: Awesome T I need to own from https://www.teepublic.com/gifts/baymax)

It wasn’t bad. So I kept it up but went slow. Slow walk around the block. Then a jaunt to Starbucks. The next day a bit further – all the way to Walmart.  Then it happened – the crash. I could sleep again..but I’d gone past the balance point.

I knew it was going to come, I knew there would be starts and stops, so I guess it was time to get my momentum knocked down a notch. The really incredibly irritating thing about CFS/ME is post exertional malaise. So I feel ok when I’m getting some exercise, but the next day, the day after, and the day after that. Ugh. This makes is so difficult, because like a normal person I feel great being out in  the fresh air moving around. But getting my heartrate up causes problems the next day and beyond, almost without fail.

So, back on the couch. I’ve watched a lot of X-Files and Agents of S.H.I.E.L.D. and then starting again, bit by bit. I overdid it again a week later – beautiful wander by the lake turned into a 4km walk that was blissful and ill-advised.

And then I had a medical test that required me to fast for a couple days. And take medication that made me pretty dehydrated. It’s like I’m right back at the beginning, which sucks. But…I now have proved to myself that when it’s bad, it will get better. And that is a very important lesson for me.

It’s also very humbling to spend some time at the hospital and remember that while I certainly don’t feel healthy right now, I am without a terminal or life-limiting illness as far as I know. This most recent test was the first time the big C came into the picture, and I’m pleased to say that went right back out of the picture thankfully. So, that’s a good thing I can hold on to.

In addition, there’s very little you can feel bad about when nurses in recovery are asking you every 5 minutes if you’ve farted yet.

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New challenges, getting back to basics

Well it’s been awhile since I blogged here. Some people follow my other blog with ridiculous dating stories. This one is a bit more personal.

I’ve previously shared my challenges to find a passion, and to find “my funny”. So now I’m going to write about this new set of challenges – living with a chronic disease and rehabilitating myself so I can get back to work.

Don’t worry, I’m really not planning on this being a bummer. I have no interest in writing about how much this is going to suck. Today was my last work day for awhile, which is why I’m trying to plan my life. No work means no structure, and that makes me an antsy girl.

I anticipate trying some new things over the next while, and that is ALWAYS fun to write about. There will be medical tests, doctors appointments, random supplements and new medications. I’m hoping that writing about the ridiculousness of it all will help me plug through. Because I like my job. I love my work and the people I’m surrounded by. And I refuse. REFUSE I tell you, to not be able to keep doing it.

Onward and upward!

I’m living with hronic fatigue syndrome (aka myalgic encephalomylitis, or CFS/ME) and fibromyalgia.

“Chronic freaking fatigue syndrome? What idiot came up with that name, Baron von Under Statement? That’s like calling leprosy ‘chronic dandruff syndrome’.”

So it’s an illness (and you anthropologists out there should know I use that term deliberately, because ain’t no way you can have this and not be impacted by your experience of the disease) that causes….fatigue. But not just tired. Bone tired. Unrelenting tired. Like you would feel if you never slept…except you do. You just don’t feel any different when you wake up. That gets old quick, and can make a girl cranky. You also have all the issues that would come from not sleeping – brain fog. I lose words sometimes. That’s fun at work. The other main issue is post exertional malaise. Which sounds a bit like a get a little tired after exercise. In reality, it means that it will take me days to recover from moderate exercise. I’m very lucky, for some people, getting up and getting dressed is too much. I mean, flat out, unable to get up, feel-like-you’re-wearing-a-lead-blanket-fucking-exhausted for days. Fun stuff, yes? And then there’s FM – which is all about pain. Not joint pain, not muscle spasms. But scratch my thigh and get nauseous from the pain kind of thing. Awesomesauce.

Tomorrow is my first day where I start to recover by getting back to basics – eating well is the first step. Grocery shopping, there’s a novel idea Then it’ll be introducing small amounts of exercise and building my tolerance up once this flare has passed. This is happening. It might suck. I might have to eat bananas. Catastrophically sucky things might happen. But you can be damn sure I will need to find the funny in it all, so stay tuned.

 

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I’m not even sure I could make this up

In the “You should message me if” section:

“Oh, and you should LOVE anal. I mean, not just be “ok with it” but LOVE it. All the time. Boom! Boom! Boom!”

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Why am I doing this to myself?

I said I would do it – so here it is. A place for me to share the wild and wacky things I experience while online dating.

Sigh. Am I still doing this?

Yes. I told a friend that this was “one tool in the dating toolbox”, not the only way I’m trying to get out there and meet people, but one of the ways that people seem to find each other.

But, there are some real gems out there. Now, I should really say that, for those of you that know me, you will know that I am an incredibly non-judgmental person. You be yourself and that’s the most important you you can be.

However – it doesn’t mean that you are the one for me, and it doesn’t mean that something you’ve written in a profile or in a message (or just the username you’ve created) doesn’t strike me ridiculous enough to post on my blog.

Anywho – hopefully you will enjoy viewing what a single girl in Victoria deals with nowadays.

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2014 – Here we go

It’s been over a year since I last posted. Is that ever sad. Looks like the last time I really felt like putting words onto a page was when Finn ate lilies. I still roll my eyes at that one. But yes, it’s been over a year since that happened and I should probably give the little dude a break. 

If only he hadn’t climbed up on the counter last weekend and eaten olive oil out of the wok on the stove. And then tracked oily kitteh prints all over my condo.

IRREGARDLESS~! 🙂 

Oh a year, what has happened in a year… Well, without blogging about it, I continued the tradition of trying new things. Not a ton, but some. I played slopitch (*cringe), and I really enjoyed it (say wha?!). It was time to fully hang up the fastball gear and opt for something that was a little less intense. The team was awesome, I was playing with some old friends and made some new ones. Made a catch in the outfield that prompted coach John to say the memory would “warm my heart in the cold of winter”. Aww, thanks Coach! I even went back to the ortho field for a weekend. And remembered that I am no longer in good enough shape to do that…but that’s ok! It was fun.

I continued to try and surround myself with good people – spending more time with the folks that bring out the best in me. I played volleyball in a women’s competitive league. We didn’t win a match. But that’s ok! We were a team of singles brought together and we didn’t gel. So what? I had a blast being back on the court and remembering that it’s not actually useful for me to try and block when my fingers don’t reach over the net.

So this year? Well, first up to try is dodgeball in a few weeks if we can get enough guys to play. It’s intermediate level. I’m going to get my ass kicked, but I’m thoroughly looking forward to it. The plan is to keep trying new things and keep writing about it (in far more real time than I did last year…) because, well, it’s me. And funny shit happens to me when I try new things.

Did I ever write about the time Pam and I went to Sweat and Strut class? No? Well, that will have to wait for another time.

 

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My poor little guy

Some people have heard me say that my cat, Finnegan, is more canine than feline. This is a cat that eats not only asparagus, but household plants, Christmas tree lights, carpet, plastic…..I could go on. He noses through the garbage, he drinks out of the toilet. He is so weird.

And he has struck again. Yesterday morning I noted that he had eaten part of a plant that was particularly toxic for kittens. There is a long and involved story as to why this particular plant was in my house since I know it to be toxic and I know Finn to be retarded, but suffice it to say he ate the plant. He must have been practicing his ninja skills though, he got up onto a bookcase he shouldn’t be able to reach, past a giant planter of something else, around the crystal angels all over the top of the bookcase…Anyway, off to the vet we go.

He’s been in for a couple days, and it’s looking better each day. So far we’ve prevented his kidneys from failing by giving him large amounts of IV fluids to flush the toxin out of his system. The vet originally thought he was a goner, but he has surprised us all.

This whole episode has been draining. While he’s just a cat, he’s, well, MY cat. He’s my little dude, it’s just him and I. I went to visit him last night, just so he didn’t think I’d abandoned him. I went again tonight to do the same, with the hopes that he will be sprung maybe tomorrow if all goes well.

SAMSUNG

Hence – my picture of the day. He’s got an IV in his arm so he walks as though it’s broken (it’s of course not). He keeps flicking his arm out to the side because he hates that it’s all wrapped up. And he keeps looking at me and yelling.  It’s not tough to try and figure out what he’s trying to tell me, and I tried both times to remind him that this whole experience was self-inflicted. Here he is with his arm all wrapped, desperately trying to rub is face all over my jacket so as to not allow some other random animal to move in on his territory while he’s away.

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