"When Life is Hard, You've Got to Change"

I am really bad at having mercy on myself.

I am also the first one to make excuses for myself and then hate myself to doing it.

I have been unable to look in the mirror without cringing for about two years and a week or two ago started figuring out what it was going to take to get myself back. I've consulted with my neurologist, physiotherapist and next month I will have further conversations with my family doctor and psychiatrist.

I've been cleared to lift weights absolutely no heavier than 5 lbs with strict instructions to stop, even mid set, if I start losing control of the movement.

I'm still struggling with depression, anxiety and food disinterest. Since I don't eat convenient junk anymore and still have my pathological fear of grocery stores I often have difficulty meeting the minimum caloric, fat, carbohydrate and protein amounts every day.

I pushed myself over the 1,200 calories a day minimum with a vodka tonic two days last week.

I joined SparkPeople. I'm not really good at "group hug" forms of support but it's pretty easy to avoid the evangelists of the program.

It is so hot upstairs I've got only a minute or two to grab my laundry and get out without becoming nauseous.

I am really sick of MS taking my life away. I have to find the will to fight even harder to keep what I have. If I am strong when my next relapse takes things away I will have less reconditioning and rebuilding what has atrophied when it lets go.

I am suddenly struck with tiredness, which is strange and unsettling for me. Caffeine time.

One foot in front of the other.

I have been walking around the block on my lunch hours for the past two weeks. At first I thought it was because of my pathological fear of getting obese, but I realize that there is a greater benefit.

My nerve fatigue in my left leg rarely happens anymore. I can easily get around two square blocks at a pretty good speed without it happening, and then make it up three flights of stairs up to my office.

I've been doing physiotherapy exercises throughout the day, going to see Ray "Magic Hands" Ranger on Thursdays for $15.75 massage therapy, walking every day, and watching what I eat (I try to make 50% of what I eat each day fresh fruit and vegetables) and the strength in my leg nerves is improving.

I walked the two blocks around my office on my lunch hour, worked the rest of the day, met Joe for some dinner and then about 8 PM walked several more blocks to the hardware store for some items to fix up the apartment tomorrow and I made it with no nerve fatigue.

I still feel like I'm talking like a three year-old who's learned not to shit her pants anymore, but what the hell.

I still don't trust my body. I know that it will betray me when I least suspect it. But it's nice to know that I've got a pretty good chance of being able to get myself into a position where I can call for help when it does.

The Copaxone has left me feeling like I've been running into a lot of door frames and table corners, along with these strange itchy lumps two or three days after shooting into my arms. The other parts of my body don't seem to react like that. My Copaxone nurse doesn't think it's anything to worry about and it will probably stop in the next month.

Whatevs... I'm not getting sicker so I guess it's doing something.

This weekend is going to be productive. It has to be, because the last two have been anything but.

Now I'm going to get in my pjs, have a CC and CCZ, and do some prioritization for tomorrow.

woo.

Go me.

Too Personal

The lists in Listography started getting way too personal for a blog my mum or siblings might read, so I'll do lists as I think of them from now on.

The stupidest of MS symptoms have been acting up all day. Not the ones that make me fall down or leave me unable to move or stay awake. I lose all feeling in my right index finger whilst I am typing. I get a sharp, stabbing pain in my left cheek as I am filing. These are the kind of symptoms that remind me throughout the day that I’m not right and I never will be. Irritating rather than devastating, I just keep trudging.

Speaking of trudging, I have figured out that I bring foot drop on by trying to hurry or walk to fast. If I can just walk slow and steady I can go for much longer in both time and distance than I can if I am even trying to go a short distance by hurrying.

I’m trying to read, write and stitch every day. Most days I get two out of three, and sometimes just one, but it is really rare that I get all three done. With the vertigo caused by my vestibular problems I can't read on transit to work without the threat of motion sickness so all my want to do list has to wait until I get home from work.

I have a MUGA scan on Monday to have my annual check in after getting mitoxantrone (Novantrone). It has been known to cause heart problems so I have to get this scan every year for five years, unless I start showing symptoms of cardiac problems.

I go to my How to Deal with Injection Medication education class on the 20th. I see my neurologist on the 28th to get my Copaxone script, a pep talk and then head down the hall to Victoria the physiotherapist to learn some exercises to help with my vestibular problem.

February 1 is day one on Copaxone. I'm not sure how I feel about that yet. It's not real to me nor will it be until I'm confronted with the auto-injector on the evening of February 1.

I often wonder how many other people with stupid "But you look so good" MS (that is, the kind that doesn't keep other people from having expectations of you) feel like their lives have been complicated by more than just symptoms and/or disease progression. Shots, vitamins, shower stools, yoga, therapy, canes, drugs, research, low fat, gluten-free, blah, blah, blah.

I haven't had fun in weeks. I haven't had an absolute *Blast* in years. Between my disease, Joe's schooling and our brokeness for most of the past year it feels like it is impossible to have any kind of fun. Every time I try to plan for regular fun it doesn't seem to work out. I'm not sure it ever will.

2010

I’m sore. I’m wondering if I’ll ever feel like a human being again. And then I do some physio and I feel better, but I don’t do it everyday because it’s too much of a hassle. Much more of a hassle as having your body yell at you for letting it get stiffened up? It feels so good afterwards, why don’t I do this all the time?

I am uncomfortable. I’m not happy with the way things are going and if I have learned one thing it is that when I’m not happy with how I am, I have to change the way I act. I could take much better care of myself and I don’t because sometimes I don’t care. Sometimes I’m just tired. Sometimes I’m just lazy. Then I look at my body and I want to die because I’ve ruined it. I have to take getting my body back much more seriously, because I can’t do what people traditionally do to lose weight. No weight training, no endurance training, just diet and some biking.

Will it be worth all this effort? I have no fucking idea. I don’t know, but right now I’m thinking that it’s the process that means more than the actual outcome.

I’m having a lot of vestibular ataxia lately and being nauseous all the time from the resulting vertigo is getting a little old. I do hope the physiotherapist can put something together for me that will help me treat this and make it go away.

This is how insidious MS is. It creeps into your life just one crappy, rather small symptom at a time. Numb fingers, tingly toes, tripping over lines of latitude, bumping into the corners of desks or catching door jams in the shoulder; one of these things would be insignificant and easily ignored. all of them are annoying and constant reminders that I’m not right and I never will be. Even as I type this, my right thumb is losing feeling off and on. My left toes are tingling like little shocks you get from licking a 9 volt battery are rushing through the bottom of my feet. My wrists will hurt at some point today. They hurt with short, sharp pains off and on for most of the day, most days of the week.

It feels like the year doesn't start until tomorrow. I'm cautiously optimistic about 2010 but that's mostly the anti-depressants talking. I have reset a 101/1001 list for January 1, 2010 to September 28, 2012. I'm not sharing the list publicly because much of the list is highly personal or horribly tedious. But less than 3 days in I've kept up with what I wanted to do. I've even completed one thing.

I quit smoking because Joe thought I couldn't do it. My single resolution for 2010 is this.

I will not be in the same place I am now on December 31, 2010.

"You must do the thing you think you cannot do." --- Eleanor Roosevelt

Differences

I have spasticity in my left calf that sometimes throws off the proper movement of my knee.

I was searching around online for ideas on how to mitigate this MS symptom. I was struck by this cultural difference.

When I took this to my neurologist I was prescribed a trip to the physiotherapist and was suggested a consult with a yoga instructor. I went to the physiotherapist and was given 8 simple exercises to complete on my own with a follow-up appointment in November.

Every American and Brit I encountered online were prescribed a medication. From the sounds of it, quite a costly one for the Americans with some pretty inconvenient side effects.

Does anyone else find this strange? At first I thought it was a symptom of the profit motive in US health care, but when I found the Brits were getting the drugs just as often, I started to think that maybe its a regional thing. Maybe British Columbians are just less lazy? BC is a very activity focused place, Vancouver even more so. I wonder what the treatment of MS is like in Ontario, because that's the next likely place I'm going to live in Canada. Do the clinics there have all the stuff I have access to in Vancouver?

Just wondering.