Self-pity is a helluva drug

I had a really difficult time with my mental health the past month.

I had spectacularly bad times with the nerves in my right foot and right cheek.

And I still have the nagging post-viral cough from that cold I had two weeks ago.

Turning 40 was the worst fucking thing. I started falling apart 10 days before it even happened.

I bottomed out emotionally and mentally about a week ago.

I can't discuss details here because it involves private communications between my spouse and I, but what I can say is this...

Not having a goal, destination, or outcome to shoot for makes me crazy. I don't necessarily need that goal, destination, or outcome to be the thing that happens, I just need a direction. I spent my life up until my 30s with no direction. I can't go back there.

That still doesn't mean that I have any real idea about what I really want to do. So for the past couple of weeks I've been reading, writing, and stitching again. I'm doing these things because I know I like them.

***

Until I can get this nerve-pain thing in my left foot worked out, I'm not supposed to lift weights.

***

I found this sugar-free bread that is so good I can only bring myself to put butter on it when I make toast.

***

I can't say what's going on next weekend, but I hope two of my favourite people have lots of wine to drink with me.

***

Happy Lord Simcoe Day, BC Day, Heritage Day, New Brunswick Day, and/or Civic Holiday, Canada!

MS can suck my ass.

I'm really trying to think less violently. The past five days make that difficult.

***

Dateline: Friday, July 4 8:30AM

Wake up with massive amounts of shooting nerve pain in my right foot and in my right cheek.

Soldier on.

Do some work. View a little social media. Try to make some plans for the next week.

***

Dateline: Friday, July 4 2:30PM

Shooting pains are now in my calf, thigh, and right bicep. Every movement causes more. 

Tell spousal unit that I might be having an MS attack. The weather is fair, clear, and not hot or humid, so I freak. It's super painful. We have some lunch and head for the ER.

***

Dateline: Friday, July 4 9:00PM

Released from ER with a referral to a local neurologist, some drugs that are reportedly good for nerve pain, and a recommendation to lay off refined sugar and processed flour products because they both are bad on the nerves.

Find out from pharmacist that the drug is also a anti-psychotic mood stabilizer and anti-seizure medication. Have mild mental freak out.

Get home, eat fruit, take medicine, pass out within 30 minutes.

***

Dateline: Saturday, July 5 10:30 AM

Wake up after 11 hours sleep. Pain is still in my face and foot, but it's gone in my leg and arm. Notice that the drug bottle says to take twice a day. At 11AM I take the second dose.

Dateline: Saturday, July 5 12:05 PM

Pass out with laptop still on my lap.

***

Dateline: Saturday, July 5 7:30 PM

Wake up, have dinner. Do some work. Have a shower. At 10:30 PM take third dose of medicine, because it says twice a day.

***

Dateline: Sunday, July 6 10:30 AM

Wake up. Eat food. Try to do some work. Fail.

Lay down for nap at noon.

***

Dateline: Sunday, July 6 4:00 PM

Wake up from nap. Spousal unit asks if I have taken any medication that day. Respond in the negative. Fall asleep playing Pocket Mine on my phone.

***

Dateline: Tuesday, July 8 10:00 AM

Wake up to a pain-free body. Think that it is Monday. Text a colleague that I won't be into my public office that day when I find out its Tuesday. Spend day trying to stay awake and remember what happened yesterday. Go to bed at midnight.

***

Dateline: Wednesday, July 9 6:37 PM

Write a blog post about how fucked up my past few days have been and try not to rage against the bullshit that is the treatment of nerve pain.

***

I believe that my experience was caused by a combination of not having refined sugar (and the associated regular intervals of caffeine) and taking that drug. If this is the best they've got for nerve pain, then I'm going to have to reconsider living.

Today was better. No pain, just a little bit of fatigue, but I also had 2 cups of coffee with organic cane sugar in it, so I think that was the difference maker.

Goals for tomorrow:

1. To get dressed.
2. To leave house.
3. To work on the backlog of stuff I didn't get done on Saturday through Tuesday.

***

MS can suck my ass.

I'm really bad at this.

Finding the balance between Routine and Excitement is what drives me absolutely nuts.

***

The heat and humidity make me very fucking cranky.

***

Nothing is going like I planned. That isn't contributing to my sunny disposition either.

***

I have a pending friend request on Facebook but I'm really afraid that I've forgotten that we had sex at some point in my ancient history and there will be hurt feelings like there was the last time I accepted a friend request from someone I had sex with in high school and didn't remember.

But I'm pretty sure that I didn't have sex with this person. Like 95-99% sure that I didn't.

***

Listen, if you're reading this and we had sex just once at some point between 1988 and 1999, I probably don't remember. If we had sex more than once, then yeah, I probably do remember that it happened. If I ever told you I loved you, then yes, I couldn't forget if I wanted to, but I don't remember specifics.

(Yes, specifics have come up. Yes, feelings were hurt when I didn't remember. What you people expect from a 40 year old brain that endured a history of substance abuse and demyelination, I have no fucking idea.)

***

I used to love summer. I can't be the only person with MS who now just fucking loathes the season?

I really hate summer. It's not even July yet and all I want is spring to just hurry up and get here. Give me 15 degrees and overcast! That's my happy place!

"I hope you are able to find new hope while living with this disease."

This is one of the things I just don't understand. This person is a stranger to me. She just happened upon my blog, and decided that I was a great candidate to give hope to other people neither of us know because I have self-identified as someone with MS.

You know what I have hope in?

Science.

I have hope that the collective fundraising groups are throwing more money at research and science than they are building websites to build hope.

Hope is a false profit.

Science, that's got the chance to really change things.

I don't believe that there's a "cure" for MS that doesn't include completely changing one's immune system. Fucking with DNA, wholesale stem cell transplants; that's where the hope is.

It's not on a website full of platitudes.

I'm still well enough that if they found a way to permanently halt the progression of my disease, I'd be okay. I could live for the next 50 like that. No problem. I think that that kind of cure isn't that far away. I suspect that we'll be there by the time I'm old enough for CPP.

It's the reversing of MS related damage... that's going to be where the money is.

Once they get there, the next thing is to prevent MS from happening in the first place.

My hope is in science, not in a bunch of people I don't know.

Wrong person

There's a comment in my previous post from some for-profit, US Healthcare bullshit, asking if I would post a short video of hope, encouragement and inspiration for those just diagnosed with MS.

I'm the WRONG person for that.

You see, I know that that the "power of positive" thinking is bullshit.

It's not going to help me get better. It's not going to make my symptoms go away. It's not going to give me back functioning ovaries, or put my hair and nails back to healthy.

I can't think my way to not having MS.

What I can do is share my experience:

In a nutshell, if you liked your life before MS, you're going to hate it now.

If you hated your life before MS, you're going to go through bouts of suicidal depression and a level of self-loathing that will make you wish you were dead.

Any plans you had that go beyond maybe a year from now: accept that they're just plans, and probably not the likely outcome.

No one has a cure for MS. From the best research available, most people with RRMS are not completely disabled after 10 years who:

do not smoke.
get regular exercise.
eat a diet of small amounts of protein and large amounts of plants.

Which is kind of funny, because that's what they tell people who DON'T have MS to do to stay healthy.

MS broke me at a time where I was just getting my shit together. I will never be able to make up for what MS cost me.

I don't have anything to offer a newly-diagnosed person. My MS isn't your MS, and if forced to choose between the MS I got and the MS you got, I'll stick with what I have. It's not a gift, it's not full of great lessons, and it did not happen for a reason.

I will concede one thing about the "power of positive thinking".

It makes my family and friends happier to be around me when I pretend I have it.

Long time ago

in a land, far, far away; my last and only hope to stay in Vancouver was dashed.

A year ago I got the call that I would not get the job I'd been hoping for. They decided to go with the person they thought they would get along with better.

Yeah, I know. I think about that sentence at least once a day.

I regret not staying in Vancouver less and less. When I realize how little money we actually make, we'd have been homeless by now had we stayed.

***

This weather though.
Fuck this winter.

***

I spend a great deal of my time pretending to be someone I am not.

It's difficult.

Still, I haven't had a progression in my MS symptoms since I originally got sick in December 2008.

It just the same shit, every day, all day.

I'm trying my hand at self-employment.

I really hate it.

I really hate the people you have to deal with in order to both eat AND pay the bills. I hate the person I have to become in order to be perceived as competent and capable.

I'm depressed, but not as bad as I have been before.

I hate it here.

I need to start dating an extrovert with money, because I'm bored to fucking tears around here.

I got this thing...

I don't normally ask Doctor Internet about symptoms, ESPECIALLY MS symptoms, but this has got me kind of weirded out, so I thought I would see if any of my other MSers had anything like this.

If I talk for more than about 10 minutes, just like back and forth in a normal conversation, I start straining for volume and pitch. I actually have to work to form words, and keep my voice audible. Talking becomes *exhausting* and full of effort.

Now, if you know me... talking is kind of my thing. I can talk forever. I used to never shut up.

This turn of events is kind of a big deal. It's been going on for a month or so.

Part of me wonders if it's just lack of use. I don't work very much, I don't have any friends locally, I "talk" to pretty much everyone in my life by typing to them. This also includes Joe, because he's not home a lot and when he is he's like linear algebra and C programming 24/7.

I don't really talk anymore, or at least not even half as much as I used to, and my body just isn't used to it when it happens.

The other part of me wonders if this is a new MS symptom and I'm going to be unable to walk or see or stay awake in a few weeks.

Because that's always a possibility.

***

Apparently, I'm not going to get any Adderall until I am sleeping more than 12 hours at a time.

So there goes my plans for that legal addiction.

***

I have the teensiest amount of hope that I will have a steady liveable income by the beginning of next month. But it won't be at my current job, and I'm okay with that.

Humidex

It is 10:00 PM. It *feels* like 35C. That's 95F. It's fucking terrible.

It's been like this for two days.

I am living in my bedroom with the window unit air conditioner, except when I want to use the internet. That can only be done from the living room, because that's where the wi-fi signal works. Internet is intensely complicated here... so long story short; we only have internet in the living room.

My vision is out of whack, I'm constantly dizzy, and I'm ANGRY ALL OF THE TIME.

Joe's cooking dinner (yes, at 10 PM.) and once I eat I'm going to take the coldest shower I can stand, put on a tshirt, and lay in bed until I fall asleep.

It's cool enough in there that I will know I can sleep.

I hate this. I hate this weather with the white hot intensity of one thousand suns.

I can't function. I can only leave the house if I am going somewhere that is climate controlled. I alternate in 20 minute spells of being in the bedroom and then trying to do something in the rest of the apartment, or being online, for 20 minutes.

It's not working well, because I can rarely do 20 minutes in the heat.

It is at times like these that I question our decision to move. This weather is TERRIBLE for people with heat sensitivity.

What's worse, my cooling devices don't really work in humidity.

I had a long, detailed rant about how much I hate everything, but I've had to stop and start this so many times that I have forgotten what it is. Suffice it to say that I am really unhappy about a lot of things, and this bullshit weather is only amplifying my distaste for life.

***

I have now eaten. I'm getting in the shower. Fuck this day. Fuck this weather.

Um, whut?

Annette Funicello died today.

"Her family told Extra that Funicello passed away from complications of her illness, and they were by her side when she was taken off life support. Funicello had been in an MS coma for years."

What in the flying fucking fuck is an "MS coma"?

I've had MS for almost five years, I HAVE NEVER, EVER, EVAH, heard that this was a thing.

How is this a thing?

Why did no one tell me it is a thing?

***

***

My temp job gets easier but vastly more irritating as of tomorrow.

***

Barring something unforeseen happening, two weeks from right now I will be sleeping in a hotel in the Greater Missoula, Montana Area on the way to Ontario.

I have never wanted anything so badly in my entire life.

Boredom causes fatigue

Brain numbing boredom had me just about falling asleep in my chair at work this afternoon.

I realized I forgot to have a caffeinated beverage at lunch, so that's why I didn't make it I think. If I miss that, the fatigue chases me from 2 PM to 5 PM.

If you have fatigue, specifically MS fatigue or other fatigue, what do you do to make it through the day?

I haven't found a whole lot of insight into this because most of the people I've found online who blog about MS or share information about having MS don't hold down a 9 to 5 at somebody's office.

Again, I'm reminded of why I kept this blog going... there aren't a lot of people out in the blogosphere who bring home the bacon.

Mmmm, bacon.

Do you know any MS bloggers who have jobs outside of their homes? If you do, post their url in the comments.

I want to know them.