Chronic Pain and Working…

I have a question for all of you chronic pain sufferers out there… How do you get/keep a job?

For me this has been a struggle.  My migraines have had me switch goals and careers more than once, and has made it very difficult to get a job, and if I’m lucky enough to get a job – keep it.

When I first graduated high school and started university, I had this idea that I was going to be a musician.  I was a semi-decent oboist, and I truly enjoyed making music more than anything else. While this might have been a lofty goal that I probably wouldn’t have achieved to begin with – it was disappointing when my migraines and pain made it physically hurt to play my oboe. It still does, I still have my instruments, even though they cause me pain to play, but I keep them around like a security blanket, maybe one day I’ll be able to make music again.  Anyways, I switched goals, I was going to be a teacher.

I went to teachers college to get my B.Ed after I completed my Fine Arts degree.  I somehow managed to get into one of the toughest programs in the province and I had some great teachers, unfortunately my migraines made the school work difficult. After finishing my degree it took me a year to get hired, and I had a great 2 years working for my local school board.  My migraines were difficult, but I was able to push through. The following year my migraines got worse, and as the schools music teacher, it was difficult to keep up, and to not let my pain get in the way. I ended up having to take a leave of absence for the last month of school, as I was home more than I was at school.

The next year I interviewed at 42 schools before I found a position. My contract with the school board was year to year, so if I hadn’t found a school to hire me, I would have been stuck supply teaching.  It was so hard to find a job, because who wants to hire someone who has a known medical condition that caused them to miss so much work the previous year. Somehow the principal only contacted my first 2 references (from the 2 schools I did amazing at) and never contacted the last school. I thought that I was better and would be able to have a successful year… that did not happen. I ended up missing so much school, it was almost a shock to everyone when I was there. I ended up having to take a sick leave for the last 2.5 months of the year.

After that it became impossible to find a job.  I stayed on with my school board as a supply teacher, but the calls didn’t come that often.

I began working for a friend of my dads. He is a lawyer and required a legal assistant on a temporary basis.  I took that job and found it wasn’t as much a migraine trigger as my job as a teacher (probably because I wasn’t listening to 30 kids play instruments all at the same time) so I decided to change my career goals again and become a paralegal.  I went to a community college and graduated with a paralegal certificate and shortly after did the provinces licensing test and became a licensed paralegal.  Unfortunately I had a lot of difficulty finding a job.  My dads friend no longer required my help, other places I had worked for while I was in school didn’t want to hire me as I had missed work so often due to illness, my references, while good, could always mention my illness/habit for missing work.  Between school  and this past week, I was unemployed for the better part of three years, which put a lot of pressure on my partner, my parents, myself, and my relationship with the same people.

Last week I got hired for a job as a junior legal assistant.  I am over qualified, between my experience as a senior legal assistant, and my education as a paralegal, however they were the only place that would hire me.

The pay isn’t that great, but because I am so over qualified for the position I am not stressed about the work.  I don’t have to talk to clients, or listen to students or parents. I sit in a quiet cubical in a quiet office and do my work.  I’m hoping that this situation works out for me, because if it doesn’t I have no idea what I will do.

I know many people with chronic illnesses/chronic pain go on disability… because my work was few and far between, I never qualified for disability, because in Ontario you need to have worked a certain amount of hours just before, and half the jobs I had didn’t pay into EI.

I have decided to reward myself for working. Every week I go to work every day, I get a prize.  If I go every day next week, I get to buy a lottery ticket. The following week are BINGO scratch cards, followed by a facial, followed by flowers if I go every day this month.

I’m hoping with the incentive of prizes, I’ll be able to work through the pain I will most likely experience in the upcoming weeks.

How does everyone else deal with work and bills? I’m terrified of being in debt and not being able to pay it off because of my illness, so what do you do to keep yourself from getting into debt, paying your bills, and keeping yourself clothed/fed/sheltered?

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Lost…

Sometimes I find that I’m lost.

Not lost in a psychological “what am I doing with my life?” way (although I do find that happens to me a lot) but in an actual “Where am I?” way.

I have always been bad at directions.  I remember one time giving directions to my house over the phone to a friend of mine.  I was in high school and lived in a different city than everyone from my school (My mother transfered me there instead of the school I was supposed to go to, because the school I was supposed to go to was a rough school, and my mom wanted me to have nice friends)  Anyways, I was giving directions and I remember so clearly saying “take the highway to the Bayview exit.  There is no sign that says Bayview, but there is a sign that says Toronto – but its broken.  Thats the exit” (my friend later told me that in HUGE letters the sign said BAYVIEW, and in super small letters under that it said “Toronto”) and later on (in the same phone call) I said “when you get to the stop sign turn that way” and I pointed.

My issues with getting lost and directions have been around forever. When I first got my drivers license, the first thing my dad did wasn’t add me to the insurance, or make sure I was comfortable in the car…. nope – he made sure I knew how to work the GPS. (which was really smart on his part.  Even with the GPS I spent the first few weeks driving getting lost and calling him for directions)  Almost any time I go into the city, one of my friends inevitably gets a call from me, or a picture, or a video call, where I’m saying “This is where I am.  How do I get to where I’m supposed to be”

So when I say I’m used to getting lost, it’s not an over exaggeration.  However lately with my migraines, I find that I have a new kind of lost that I’m dealing with.  And I find that it is happening more and more frequently.  A few weeks ago I was driving home from my parents house… its a simple drive, I take one street for about 20-30 min, then I make 3 turns and I’m home.  While I was driving I suddenly didn’t know where I was. I knew I had left my parents and that I was going home, I knew where I needed to turn, only the same street that I’ve been taking frequently for about 5-6 years didn’t look familiar.  I thought I missed my turn, or I turned at the wrong street and I had to use my GPS to help me find my way home.  It was a little strange.

Events like that are happening more and more frequently.  Last week I was shopping with my sister-in-law. We walked into H&M and after walking and looking at 2 racks, I suddenly didn’t know where out was.  I couldn’t figure out how I could leave the store. I stood there for about 5 min before my SIL came and found me and was like “what is going on?”

Anyone else with migraines/chronic pain/on a lot of meds find that this happens to them?

I am not a fan of this new thing that is happening to me.

Also – my featured image is of my sisters dog. I puppy sat when she was in the hospital having her child. The dog – not impressed that I was there instead of my sister.  It is, in my opinion, the worlds most miserable dog.

What I hate most about migraines…

Everyday is a bit of a struggle for me. Not just because of the migraines… although they are shitty as hell… but I often try to look at the bright side of things – you know, I have an amazing home, a wonderful family, good friends, and a partner who is crazy-pants supportive of me (which I don’t understand. If I was dating me – I would have probably smothered me in my sleep by now – I don’t mean suicide, I mean murder…) but in a lot of ways I am incredibly lucky.

Unfortunately, somewhere in the past 8-10 years I’ve gone from being the optimist sunshine who always thought everything would work out –

(seriously I remember one time when I was like 9 years old my parents and I were at our old cottage and the power went out and all the lights were on, and it was night – and very dark, and none of us knew where the flash lights were (and this is before the time of everyone having a cell phone. I think at this point we still had the car with the car-phone in it… you know those phones are actually attached to the car) and I said “Don’t worry Dad, my smile will light up the room” and I smiled, and the power turned back on. If that wasn’t a sign that everything in life would be exactly the way I wanted it – I don’t know what to think)

To this crazy pessimistic person who on most days can’t figure out what the worst part of having migraines is. I wake up in the morning and say “Ugh, the worst part of migraines is the insomnia.” I wake up feeling still sleepy and gross

Then later in the day the worst part of my migraines is the fact that it is very difficult to have a steady job when you have chronic pain and migraines. I’ve had several jobs, switched careers, lost jobs… you name it – it’s probably happened to me. I actually think I still have a job that I haven’t gone to since September. I was (am?) working for a tutoring place (shitty pay with too many students… it was a terrible job, but it was money) and they just started to give me less and less hours until I was no longer on the schedule… but they haven’t said “don’t come back” yet. Probably because they know if they were to do that, I would probably have the rights to sue them for wrongful dismissal.. and they don’t want to do that… Now I work for a better tutoring place – better pay, 1:1 ratio, and the kids are pretty good. But I only work for 5 hours a week… which is shitty.

Anyways, later in the day the worst part of the migraines is the photophobia (where light actually hurts… it doesn’t “bother” me, and its not a fear (even though ‘phobia’ is part of the word) but lights (sunlight, artificial light, street lights) actually physically hurt my brain)

Then the worst part of my migraines is the lack of social life, or the calling in sick to work because of the pain.

Oh yeah – I also think that the pain is the worst part of the migraine..

Or when I’m making dinner, or sitting with my partner (I don’t know why I use the word partner… my dental hygienist recently asked me if he was my boyfriend or my husband, and I was like: honestly – I don’t know, I feel like I’m too old (31) to have a boyfriend, or we’ve been together too long (almost 11 years) for him to be my boyfriend, but we haven’t had a wedding – so even though he is my common law husband (we have been living together 5-6 years) he doesn’t like it when I use the term husband. And when I say partner (which is basically what I am saying on this blog) but when I say partner, people assume I’m a lesbian… which would be okay if I was – except I’m pretty sure my beau (ooo maybe I’ll use that one) or “male counter part” (significant other?) anyways, he would not enjoy people thinking he was a girl)

Anyways – I’ll be making dinner for us, or sitting with him when he eats… and I think “Nope – it’s the nausea… THAT is the worst part of migraines.

Then later in the evening it’s the pills (I take so many) that are the worst part.

Then I can’t sleep – and I’m back to insomnia being the worst part. And I go through this every day.

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For those of you who have read this far – Congrats – here is a reward.  It’s picture of my dad going through a dumpster.  I was with him and we went for a walk. When we got back to the condo he said “Hold on, let me get my newspaper” his condo has a room near the mailboxes where the newspapers get delivered to because they don’t allow people/delivery people to wander the building. I assumed he was getting the the paper from the newspaper room. He wasn’t. Apparently people throw their already read/half read/never been read papers in the garbage… and my dad won’t pay for something unless you can get it for free from a dumpster?

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I do apologize for the way this is reading. I spent a lot of the day watching The Marvelous Mrs. Masial”… It’s an Amazon Original Series, and it is amazing and the main character is a Jewish woman in her 20s (during the 50s) whos husband leaves her, and she becomes a stand-up comic. And I find I really was able to relate to her.. because we are both Jewish… and women…. And so as I type and I say what I want to write in my head, it comes out as 1950s NYC Jewish woman… so in my head there is this accent that doesn’t exist, and inflections and tones that I would use if talking, but doesn’t always come across in writing

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Anyways – it’s about 3:00AM here in just north of Toronto, Ontario and I am wide awake (Insomnia) which sucks because all the doctors say I need at least 8 hours of sleep (my dad says 10 because I “need more sleep than the average bear”) and I should be going to bed and waking up at the same time every day… only I’m not really sleeping these days – and the lack of routine causes migraines… It’s a terrible cycle.

Did you know in Just North of Toronto, Ontario, Canada.. its possible to go from -15 Celsius to +5 degrees Celsius in the same day?… Talk about things that fuck with you head.

Anyways – all you chronic pain/migraine/depression/anxiety/unemployed people out there… you guys find yourself watching a lot of Netflix? That’s something I wish I could do for money – Watch Netflix or Amazon Prime all day… I could make serious bank if I could do that.

Well, I find I spend a lot of my time “watching” Netflix/Amazon Prime. When I’m in pain, soft sounds are good… so I’ll put the tv on low and watch something in the background of my crying and writhing in pain. The other day I was feeling nostalgic for my childhood… back when jelly bracelets were a thing and Lindsay Lohan hadn’t lost her shit… and so I decided to watch “The Parent Trap” (not the original with Hailey Mills (that’s impossible for me to find online) but the one with Lindsay Lohan) and I had an issue with it.

Most of the time I think what people remember most about the Parent Trap is that these twins switched places to get their parents back together… and as a kid – I thought the story charming. But now – as a grown up/adult/trying to be an adult… I find part of this movie/plot a little disturbing. I don’t have kids – so I can’t pretend to know what its like… but these parents had twins, divorced, and then decided they would each take one kid. I can’t imagine giving birth to a kid, keeping an exact copy, and never finding out what was going on with the other one ever. Everyone just kind of took this custody arrangement as a normal thing… but for me… it sounds crazy. (although my experience with divorce is watching TV/seeing what happens to my friends parents) It just really bothered me… and clearly is still bothering me.

Anyways, that’s all for today… to reward you for reading this far – here is a picture of the squirrel that attacked me when I was in university. I took that picture (and if you look, the squirrel looks a little threatening) and then the animal ran up my leg, torso, and neck  and got into my hair.

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And for those of you interested… the “feature photo” for today is a picture of me at one of the places I worked when I was in university. It was a musical instruments store and we were often allowed to pretty much do what we want (Think Empire Records… only instead of CDs/records/cassettes, we sold instruments and sheet music) I must have done something dumb or lost a bet… so my co-workers made me a sash that said “Dunce” and wrote “Hat” on an envelop and put it on my head. I wore it all day.

I hope you are all having a better time then I am right now.

 

 

 

There and back again…

Well, it turns out I forgot I had a blog, which would explain the months of no posting.

The point of this blog was to document my journey back to normal, or finding my new normal, and for a while I thought I found it.

My neurologist had me taking all kind of medication that made me feel like I was constantly in a brain fog, but my migraines were getting worse.  Her only suggestion was to up the dosage until I was on double the normal dosage… so I said “fuck it” and I spoke to another doctor about weaning me off those pills.

When I stopped that medication, I increased my water, magnesium, and I also got rid of a lot of my chemical products, so my shampoo/conditioner/soap etc was all natural/organic and scent free (BTW – super expensive) and I was using essential oils daily for my migraines and anxiety.  And then I had a great month.

I had fewer migraines, I had more energy, I was less anxious and depressed and it was AMAZING.. my life was almost back to normal (except for the still unemployed part) My sister had a baby and I was able to help her out the first few days my niece was around (My sister had a C-Section and it was hard for her to move around). I felt like I was being useful.  Then about two weeks ago – the shit hit the fan.

I live in Southern Ontario where the weather is often a crapshoot. We had several days of the weather going from -12 (celsius) with blizzards in the morning to +11 and sun shining in the afternoon, to rain all night. All the changes really messed with my head and my migraines started up again.  I had to miss appointments, and a good friends baby shower (which was today) and now I’m back to where I was before.  Only on less medication, and so more aware of the fact that life just got real shitty again.

Now that I remember that I have this blog, I’ll try to remember to update it more frequently…Happy Saturday Night, hope you are all having more fun than I am…

I also decided to share a picture of my panda trying to do a BINGO scratch card..

Migraine Monday

Okay Readers Looks like today is another Migraine Monday!

That’s a thing right?? If not, I guess we can make it a thing. I’ve made it a thing. Because for me, its migraine Monday, and Tuesday, and Wednesday, and Thursday, and Friday, and Saturday, and Sunday.

So, a few posts back I promised a book review on The Migraine Miracle by Josh Turknett (Migraine Miracle.) I was thinking of doing a proper book review but I’m in too much pain for that… so here goes

  1. It’s called The Migraine Miracle A sugar-free, Gluten-free, Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good… Keep that in mind
  2. The cover is kind of boring. Its green and white
  3. At first reading it – I’m kind of into it because he calls migraines beasts… which I’m into
  4. There is a lot of gloom and doom about how migraine sucks, and different patient stories
  5. After reading about 99 pages (actually exactly 118 pages) I realized that I didn’t need to read the book. The author spends 118 pages discussing migraine, and then you find his miracle cure…. Which is A sugar-free, Gluten-free, Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good
  6. Did that sound familiar… it should. It was in the title of the book
  7. Then I got angry… I don’t have all the time in the world to read that his migraine cure is a diet.
  8. I threw the book
  9. It knocked some bottles off my dresser
  10. I still haven’t picked it back up. It’s still on my floor

So that was my book review. I hope you enjoyed.

I also promised a look at my workspace. But my work space is really just my laptop on my bed – because lets be honest, I don’t really leave my bed all that often, and no one needs to see a picture of my bed (you can actually see part of it in some pictures I’ve posted of Patches – my stuffed bear.)

I also said I’d show my migraine toolkit. But its half empty right now, so I’ll save that for another day.

I had a really shitty week. I guess all my weeks are shitty, but they are getting particularly shitty. I guess I wrote on Thursday about being Angry, so you know all that nonsense.

Friday, once again – I had a migraine. I ate, I yogaed, I meditated, I exercised, all while crying in pain by the way. And nothing helped. Then I had a really gross dinner. Apparently along with migraines I have high cholesterol, so instead of making pasta sauce with ground beef, I decided to try ground chicken. It was a bad plan. Chicken doesn’t make the same small chunks as ground beef, and it was just a bad texture and bad everything.

Saturday – wake up – migraine! YAY!!! So I went to work for a half hour (I sit with a boy while he practices piano. Correct his mistakes, that kind of thing. I’m not his teacher, I just sit with him while he practices) you know what is GREAT? When you have a migraine, and you have to listen to piano.

I don’t even remember the rest of what I did Saturday. I know I was in pain. I know it was becoming painfully obvious that I hadn’t showered since Wednesday morning and my hair was getting disgusting. But the pain just kind of blocks out everything else. Saturday could be the day that I decided to try Voltaren on my migraine. It didn’t work.

Then we get to Sunday. At this point my migraine hurts so much, that my entire head is sore and feels bruised. I wake up, and go to work for half an hour (again, to listen to a boy practice piano) On my way home I decide to pick up some bagels for brunch with my partner. I then forget that I decided to do that and drive home. As I was pulling into the driveway, I remembered, turned around and went to the bakery to buy bagels. I also parked like a dick. I got out of the car, noticed I was in 3 spaces, said out loud “wow I parked like a dick” and then continued on my way to the bakery, I had no caring. I then went home and my partner and I had bagels/lox/tuna for brunch, and I left him to watch football, and he left me to go upstairs and cry like a baby because my head hurt.

I find that my migraines get pressure-ey. Like there is a giant build up of pressure in my head, and if I just drilled a hole in the side of my head/my temple, and relieved the pressure, everything would be fine. But apparently that isn’t a thing that happens.

Today I have to leave my house and deal with unknowns. That’s where I don’t know how I’m going to react migraine wise. I have to go grocery shopping, and the grocery store sucks. I have to take my partners car for an oil change and to have his tires changed, and I don’t know how I’ll react there. I have to go to the drycleaners, which will be fast, but suck. I also have to go to the health food store and see if they have chemical free/scent free shampoo. The mother of one of the kids I tutor is a doctor who deals with illnesses that stem from toxins, and shes told me to make sure there are no chemicals of any kind in my house or on my body. So I’ve decided to start one step at a time, and find a new shampoo/conditioner.   Because my dream is that I try new shampoo and conditioner and my migraines just go away.

I did shower today… which is good. It hasn’t been a week since my last shower so I guess that’s a win. And I’m doing some laundry. I try to do something productive every day, and some days that’s just the laundry and a shower. Today it’ll be a laundry, shower, shopping, tire/oil change, dry cleaners, and I work for an hour and a half today. 30 min of listening to a kid practice piano, and an hour of tutoring.

Anyways, I’m having extreme anxiety about leaving my house with a migraine… as I type this my hands are shaking. It has actually been quite difficult to type up this post. And I’m not really sure what this post is about. I guess just my life with my migraine, and nothing really. Sorry if you got all the way to the end and were disappointed. To make up for it, I’ll make the picture another one of my bear.. this time trying to play a BINGO card.

Journaling and Tracking Your Mood

This for sure goes well with my latest post on Anger. Journaling 100% helps deal with the feelings, and when I use a chart, gives my therapist some more information to go on when I see her. I also find when I write enough, I can write myself out of my hole of anger

The Bipolar Writer

I have written a lot lately about my experiences which have helped my memoir take shape over the last month. Today I want to focus on something different that has helped me over the last year.Journaling my daily thoughts and tracking my mood every day.

Journaling my thoughts is a straightforward idea, you write everything that is bothering you, what is good, and where you want to go that day or night. I prefer to journal in the morning, but I would say find a time that works best for you. I have met people that say they journal the end of their day to better understand their thoughts. For me, I prefer to journal in the morning because I can focus my thoughts to better get my day going. It could be five minutes or an hour of journaling. It really is up to you.

The reason that I…

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Anger

I’m angry.

Anyone else angry with their situation or journey?

Today mine has made me angry.

I do everything the doctors tell me to do (wake up at the same time, go to bed at the same time, don’t skip meals, don’t drink an excess of caffeine, eat protein immediately upon waking up, and take the hand full of pills I am required to take)

I practice mindfulness and I try to keep active and yet still, day after day, hour after hour… Migraine.

I think I might be growing though. Normally it makes me sad/anxious that I have this constant pain that makes it impossible or me to do anything… Today I am angry and furious that I can’t do anything. That its garbage day, but even with my sunglasses and hat its too bright outside for me to take out my garbage.

Today I am angry that once again, my house will remain a mess, because every time I move it feels like my head will explode, and I can’t have that pressure.

So today, I am angry. Anyone else got any feels?

(I couldn’t spend the time to find a picture of anger.. so instead I hope you enjoyed the picture of my teddy bear hoarding the chips)