What time off plans will be most vacation-ey.

My shrink has been on holiday, so I haven’t seen him for three weeks. Or rather, Tuesday was the first time I have seen him in three weeks. In the meantime I’ve started crying at my boss, and I’m just sort of feeling worn out with the stupid summer weather and attendant migraines.

When I cried at my boss, I had said that I hadn’t really been on a good vacation since 2009, and that I didn’t actually have many vacation days accrued yet, and he said he was happy for me to do whatever I needed, that he didn’t want to lose me, etc. So I had said to him, I think this was last week, that I had thought about taking some time off around the Labour Day long weekend and the beginning of September.

By the time I got to my psychiatrist this week, five weeks  away was just seeming like way too far, and that there was no way I could go to work five days a week for five more weeks until I got time off. It ended up being a pretty long appointment because he was trying to figure out what would be the best for me to take a little bit of time  I have to hopefully nip this in the bud so I can be rejuvenated and not wait until I totally hit the wall.

I didn’t just want to start days off immediately, because I’d be stressed out about work that wasn’t getting done and whether I can remember what I was doing and what I was supposed to do when I got back, and I couldn’t imagine whether it would be better to just work shorter weeks and take a long weekend for a few weeks in a row, or take off a big chunk of time, or what.

So  it ended up being a pretty long appointment before we figured it out, but my psychiatrist made what I thought was a great suggestion and then he wrote me a note for it. So I’m working a four day week this week and next week, then taking a week off which will really be like 10 days with the statutory holiday.  So I’m trying to decide what to do. I haven’t gone camping in ages, and although the weekends are mostly booked up there are quite a few walk-in tent sites available for Sunday through Friday.

I would have to pick up a tent,  which is one of the few things that I won’t be getting at Costco because I don’t need a tent for 8 people, but really I don’t even need a camp stove as I’m happy to pack some sandwiches and hotdogs to roast over the fire and marshmallows and maybe some cans of boost. I can travel light.

My frugal self thought that I should look on Kijiji first, but I’m a bit leery of buying a used tent because who knows how the last person packed it up, and I don’t really want to assemble a tent in somebody’s living room before I decide to buy it, and then I wouldn’t find out if it had a leak or small tear until I was getting rained on anyway.

My big dilemma is really if I should concentrate on all of the million projects that I have at home, including chores and more fun ones like finishing off some jewellery on making, repainting my little antique cupboard, or just try to get away..

I know is it going away is the most vacation-ey thing,  but I’m always kind of behind the gun with grocery shopping and laundry and cleaning because of the migraines, and it seems to me almost even Stephen: I could go away and then come back to a messy house which is stressful, or I could stay home but then not have any actual getaway which is stressful in a different way..

I’d like to think that I could just go to a nearby park for an hour or two, but I never seem to actually make that happen.

I woke up with a migraine, and have been taking medications for about 2 1/2 hours, and now I am mostly pain-free and about half drowsy. Which I think is a fairly doable level.  I’m in the headspace where I’m not tracking with my migraine app right now because I know that I have migraines literally all the freaking time in the summer, and it’s just depressing to see how much it actually is.  I want to go into work today so that I actually have a long weekend instead of a migraine day and then a workday and then a regular weekend because that kind of defeats the point of having the time off.

Really the problem with having a migraine is having to move. I think if I could do everything by dictation, the way that I do blogging, without having to look at anything bright or get  out of bed, I could work. It’s mostly that my head hurts more when I move, and they’re so much movement involved with getting from my bed to make sure at work; into the bathroom to get ready, out of my apartment, out of my building, into the car,  Drive to work, into the Parkade elevator, down the hall, into my department, into my office. Then I finally get to sit down and not move my fucking head until the end of the day. Here goes nothing.

Feeling like you’re in the wrong day…

i always have an appointment with my registered massage therapist on Wednesdays. Except for today, when he needed to change it. So ok, I went in Tuesday… but now it feels like it should be Thursday tomorrow and I’ve somehow gotten gypped into a longer work week. Ohhhh, perception. Why do you mess with me?

On the bright side, I was totally pre-migrainey when I went in – clammy, cold feet and hands, light-sensitive – and I warmed up about halfway through and felt a lot more like myself when I left. Sometimes I read about famous stars (actors, NFL players, etc) who have migraines and think “so what… they could afford to get a massage anytime if they had one!” An expensive but necessary summer luxury, I guess.

How much drugs does it take?

I’ve had a migraine all day. I had one yesterday and forced myself to go out and take care of a few errands. Today I just stayed in bed.

So an hour ago I took a steroid, 2 mg of hydromorphone, a tiny bit of mushrooms, and some pot. Nothing really seems to be happening. I mean, my head hurts less, but I don’t want to be awake right now. I don’t want to deal with being awake, just want to pass out. So I took two more Hydromorphone. And another little bit of pot. And a sleeping pill. I’m gonna take a Benadryl now and hope it is the icing on the cake.

I just ordered some chocolate brownie flavoured protein powder online hoping that will help with the whole using food as a self soothing thing, because pure carbs are pretty much all I actually feel like eating. Buttered toast, chocolate bars, cereal and milk. So since I’ve been trying to have one healthy shake a day maybe the chocolate will cover up the greens powder and complement all the fruit.

Cry

I got a migraine after lunch and took 1/4 of the new opioid, which knocked me for a loop. So I went down and slept in the back of my car in the Parkade; I’d put a pillow down there for times just like this. It’s gone now, the migraine, but I didn’t really put a full day of work in.

I got to see my psychologist today…

I cried pretty hard at him because I felt like for a month or so after I got out of the hospital, I still wished I was dead and then for a few weeks or so I was reconciled with being here and started checking out things that I wanted to do, like go back to a fitness class and practice music and take a course or a workshop or something, but then when May came around the migraines came around too so it’s really been nothing but work and migraines (“just survival”, my psychologist said) for the last seven weeks.

I think the question of how much we can choose to form our thoughts a certain way and how much our thoughts are formed by our condition is a chicken and egg question…

I totally wept at my psychiatrist on Tuesday, and explained that I had done the basic household stuff of laundry etc. on Saturday, and I had thought that if I felt OK on Sunday I could do some of the nice to do things, like wash my make up brushes. Then Sunday I had a migraine, and so I didn’t – couldn’t – wash the make up brushes. And not being able to go on holidays was one thing, I cried at him, but not being able to wash my make up brushes was another.

And I know that if I just wash the make up brushes, instead of crying for half an hour about how I couldn’t I wash them sooner, that would seem to make sense, but it’s just a a deep deep sorrow and heartbroken grief and loss; and then I’m crying not just because my make up brushes are dirty but because if I can’t even look forward to such a small thing what is there, and the future and the idea of having years like this ahead feels so despairing and hopeless that it’s overwhelming.

it’s a lot easier for me to get behind the idea and the experience that we live in a world with some kind of universal God or Goddess energy, and that can manifest in crystals and herbs, and that you can get attuned and grounded to your own energy from a Reiki session, than that I’m supposed to pray to an all-powerful God who loves me and cares for me, even though I don’t feel it and I don’t see it and it doesn’t make any difference to me, and praying makes me feel worse, when holding crystals makes me feel better. Maybe that means that I just have terrible faith. I don’t know.

Fuck to the yes!!

I haven’t gotten a chance to post about my doctors appointment on Monday. It went fucking fantastic. When I was at my neurologist for Botox, I asked him about trying a different opioid. Not necessarily more, but something different. I’ve been on Percocet for 20 years, and I really don’t think it’s doing much in the painkilling department anymore. He said he didn’t really have any objection, but he’s never prescribed anything other than Percocet so he wasn’t really comfortable. He suggested I go to my family doc, and if my family doctor turned me down, to come back and he would do some research. Which is totally fair.

So I call my family doctor, to find out that he’s out of town on vacation and he has a locum covering for him. So I explain the situation to the receptionist, who’s known me for 15 years, and she suggested I go ahead and come in. So Monday afternoon, I went in. It took like 40 minutes before the actual appointment because they just moved to a new clinic space, and so they were taking everybody’s height and weight which was less than I thought, so that’s good, and entering everybody’s drugs into the computer. I didn’t know the dosage of most of the drugs I was on, and I offered to call the pharmacy and find out, but the nurse or nurses aide or whoever said it was fine and they would just reconcile it later.

Anyway, the locum was a young woman and I just explained exactly what I was hoping for. She offered me a stronger dose of OxyContin without the acetaminophen, and I said that I’d taken more Percocet than you are technically supposed to in the past, and I was interested in trying something new. Toradol does nothing for me, and Advil works really well, and they’re both NSAIDS. So it seems reasonable to me that a different drug in the same class might work better for me.

She said that I clearly had a long and refractory history and much as they like to not give opioids out, it seemed appropriate in my case. Then she offered me a referral to a pain clinic I’ve never heard of, where she did her residency, where I guess they do lidocaine and trigger point injections. So I left with a prescription for a summer’s worth of Dilaudid, and a pending referral.

I had a horrible migraine the next day, tied to the weather, so had a chance to try it and it’s amazing. The only problem is that it knocks me right out. Which is OK, I don’t really want to be conscious during a migraine, but it doesn’t mean that I won’t be able to work if I take it.

So I won’t have to buy sketchy drugs off the darknet after all, ha ha.

Two days in the life.

8 am – Leave to catch the bus.
9 am – Arrive at the hospital to get ketamine at nine.
12:15 pm – Allowed to leave (They want you to stay two hours after your treatment ends)
12:30 pm – Catch bus home
1:15-1:45 – Feed cat, and myself
1:45-2:15 – Nap for half an hour (feeling exhausted)
2:20 – Leave for neurologist appointment @2:45
3:10 – Leave neurologist with a face full of Botox
3:15 – drop triplicate prescription off at drugstore
3:20 – drive to work
3:45 – arrive at work
4:00-5:45 – Super important work meeting. Boss asks if I can get the work done by the end of the next day. I say of course.
5:45-5:55 – I had a migraine onset during the meeting, so I need to get on top of it now. Ransack my desk and purse and realize I don’t have any triptans (migraine specific drugs) with me. Shit! Take a Tylenol 3, a stiff shot of CBD extract and start drinking a Pepsi.
6:00 pm – Start working on stuff for Super Important Project Deadline from the meeting. Since I didn’t get to work until almost 4 o’clock, I’m going to have to stay here all night. Besides, the idea that I could wake up with a migraine tomorrow and not be able to make it into work is stressful, so I want to try and finish this tonight.
6:30 – Symptoms getting worse. Give myself a needle full of Gravol.
6:45 – So drowsy! I start drinking a Pepsi.
11:55 pm – I’m done my work, hallelujah!
12:15 am – Stop at pharmacy to pick up prescriptions.
12:30 am – Arrive home. Check email, get into bed and try to unwind.
1:30 am – Fall asleep

Wednesday:
10:00 am – finally manage to wake up after multiple alarms. Soooo tired.
10:45 am – I gotta have a shower.
11:25 am – Leave for 12:00 pm massage appointment.
12:00 pm – The Botox made a noticeable difference. My face and head are much more relaxed, but my neck shoulders and upper back are a crunchy mess. The massage is more painful than relaxing, but I know it will feel better later on.
1:30 pm – Arrive at work and stop for a flat white (2 shots espresso) on the way.
1:35 pm – Arrive at my desk. Take 2 Dexedrine and hope it will help me be alert.
2:35 pm – Call to reschedule my 4:00 pm doctor’s appointment. The idea of driving to it and it eating up work time is stressing me out.
6:00 pm – I should be working until 8:30 at least but I’m just tired and fried.
7:30 pm – Give up and go home. It’s just been “presenteeism” for the last couple of hours anyway.
8:00-9:00 pm – Pay bills, look up upcoming pay dates, update budget
9:00-9:51 pm – Organize and refill meds, so I have some in my purse, some for at work and some for at home.
9:51-10:15 pm – Eat something.

So… where is the time for fun? Or housecleaning? Or cooking and packing lunches? Or socializing? I thought maybe if I kept a diary I’d see where the time was going, but it sems like it is work, migraine, or doctor’s appointments 24/7. I think having chronic migraines in the summer is depressing in and of itself.

Some progress.

I saw my neurologist today and got my Botox injections (finally). I asked him what he thought about the steroids and he thought 50 mg was enough to use one time to knock a migraine out, that they didn’t have to be “stepped down” at 60/40/20 over a few days like I’d read. So he prescribed me some more prednisone. That’s fine.

Then I asked about a different opioid. He said Percocet was the strongest he prescribed and I said “not stronger necessarily, different” and he said that he actually never prescribed anything other than Percocet so he had no problem with my having Dilaudid (I mentioned they came in 1 mg which would be less than a single Percocet) but could I ask my family doctor for it, and if he (GP) said no he would do a little research.

So I called my GP’s clinic and found that my GP is actually away and there’s a “really good” doc covering for him. I told the receptionist, who has known me for 15 years now, that I needed a prescription that my neurologist had no problem with me having but wasn’t used to prescribing himself, and she didn’t think it would be a problem. So I’m going there tomorrow for that.

In the meanwhile once I got back to work I started having a truly massive headache and realized that I didn’t have ANY triptans with me or in my desk – not a Frova or a Zomig to be found anywhere – so took some CBD extract, an Advil, a Tylenol-3 and a needle full of Gravol. I could technically work from home but I’m afraid I’ll only sleep because my head hurts so much. Wish me luck.

Migraine & suicide risk.

Migraine.com article about suicide risk

After following the groups for two years, researchers discovered that participants with Migraine and severe, non-Migraine headaches had a 4 times greater risk of attempting suicide than the subjects without Migraine or headache. The level of pain played a role in attempted suicide as well – study subjects with a higher level of Migraine and non-Migraine pain were at greater risk for attempted suicide. In fact, each time the pain intensity scale went up by one point, the risk of attempted suicide went up by 17%.

So tired. Weary.

I missed work Monday because of a migraine then agreed to do a little side project yesterday (I’d like to have some spare dollars so I can get massage therapy and wait to be reimbursed in the insurance company’s sweet time) so that’s two days of work to make up over the weekend. It’s just this horrible cycle of always playing catch-up, and then I’m not balanced and not relaxed, which just makes it harder.

It takes so much time to go to the doctor/ RMT/ therapist/ neurologist/ psychiatrist/ hospital/ pharmacy and work and have migraines. I just don’t see myself as able to keep up a full-time job for much longer because I’m weary on a soul level.

Wednesday I went to work, booked a doctor appointment with my GP for 5:15 to try and get a referral to a dermatologist because my acne is worse than it was when I was a teen. I had to wait around for a half an hour which I spent washing my make up off so he could see the severity of the situation. When he came into the room, he said he was so sorry to hear that I was having such trouble with my depression. It totally dis-combobulated me. I was all ready to play the part of his patient who hadn’t seen him in months, and was coming in for a referral for my hormonal skin, no big deal. I don’t know if he looks up people’s electronic medical records before he sees them or if the receptionist does that as part of the chart or what. And I get that it makes sense, but it just totally changed the tone of things.

So he basically diagnosed me with bad skin due to stress. I’m breaking out on my face, and on my cheeks and joy line instead of my t-zone where I used to. Then I have huge patches of itchy dry eczema of the come and go on my hands and chest. So he prescribed me some kind of antibacterial cream from my face and a stronger steroid for the eczema, and I didn’t really have the presence of mind to push for referrals so I asked him to write me a prescription for migraine drugs, while he was at it, and said I would be back if it didn’t work. Then I went to the drugstore. And waited half an hour for it to be filled. Then the pharmacist said my total was 120 something dollars, and I just about had a heart attack because I just given them my new health benefits information with the card that I just got that day, which was supposed to give me 100% coverage. So the pharmacist figured that the plan wanted me to get generics, and they didn’t have two of the medications so I’m gonna have to go back to get them tomorrow, and so it was like 8 o’clock by the time I got home so I microwaved a bowl of peas and checked my email and went to bed.

Yesterday was the side job, so I had to get up super early so that I could catch the bus to go downtown to be on time, and I did, and I worked all day, and then I tried to finish all the paperwork at the end of the day but I was too burnt out. So I stopped working at 6:30, and went and caught a bus, but the transfer I needed was only running once an hour so I ended up walking most of the way home and didn’t get home until eight, just like the night before.

Today my skin just looks fucking awful, because I put Differin and the antibiotic cream on it which was obviously not a good idea, so I still have the bad complexion I had before, as well as a couple of dry red patches of skin that makeup just wouldn’t stick to. It was just sliding off and pilling and making my face looks super patchy. It’s like the worst make up day I’ve ever had. So then I started getting anxious that I couldn’t get my face into any kind of shape to go to work, which just made me get shaky and sweaty. So I went to work, stopped at the parking office to be told that it was too late to make any changes for this month, and didn’t actually arrive to the office until 10:30.

I had an appointment to see the hospital chaplain at 1, so I only got a couple of hours of work in before I had to leave. I wept at him for an hour and a half. I didn’t think I was that sad, but I started crying practically as soon as I saw it down. I guess it just takes so much energy to hold everything in and put on a good show at work that I’m not really in touch with stuff during the day.

So it was 3 o’clock by the time I got back to work, and I still had five hours to put in. It was just so shitty. I was totally unproductive and I felt just bleary and puffy and teary-eyed and tired. I managed to get a second wind a little bit toward the end, but I didn’t really put in a full days work. So I got home it shortly after 8, opened a can of tuna, and that brings us to now. I’ve been out of the house for basically 12 hours a day for one reason or another, and by the time I drag myself home i’m tired. There’s nothing in the fridge, except ketchup, so I have to go to the bank, then grocery shopping and back to the pharmacy, and I need gas, and I’m going to have to do some laundry before next week, and meanwhile I have to work two days out of this weekend, and probably have a migraine as well. It’s just so fucking exhausting, doing it all myself, and the cried out, wrung out, puffy eyed feeling doesn’t go away with a cup of coffee or even a Dexedrine.

I know in my head that most people that have this level of migraine consistently aren’t holding down a job at all, let alone working full-time, and I know how much time it takes for me to try and manage having a physical and mental illness, but still have this vague feeling that I ought to be able to pull things together somehow, there’s no point just stumbling through the days like this.