How is your mood?

I feel like I’m fine, then the nurse comes in and asks me that and I get all teary. My back hurts like a bitch if I move the wrong way, I have this shooting pain right through my butt cheek, so I was on the floor (which badly needs a Swiffer, so, gross) stretching for 40 minutes again, which barely helped. I am sure it’s a “jammed up SI joint” which is what my massage therapist has said in the past so maybe I will have to wait until I can get in for an appointment for a massage or chiro to help.

Anyway, back to the nurse coming in. He is a middle-aged Asian man, and came in to take my vitals and talk to me for a bit. He asked why I was here and “when was the last time I was in the hospital”, which I found interesting – now it’s assumed I’ve been in before, I’m chronic, that I am a Long-Term Mental Case. It is different from the last time I was here ten months ago, and I don’t like it.

So he asked why I was here (what had happened to make the depression worse) and I explained that for one thing I’d been waiting on a pain clinic referral since June and they’d called with an appointment time for next March, so the whole area of Dealing with Migraine is depressing, and then I started crying. Then we briefly went out over the other areas of my life (friends? Work?) and I cried while explaining them, or the lack of them.

I had two friends visit Thursday, then one coming today and one tomorrow, which is good because the weekends here are really dull – everyone is out on passes, there are no groups, etc., so I am actually welcoming the idea of social contact. Being in the hospital is already way more social contact than I ever get at baseline – I get hello and good night from my office mates at work, aaand… I make and am able to follow through on social plans every few months. I went to a movie with one friend in January, and went to another friend’s house in, I’m gonna say, around July? to visit and do some crafts. Otherwise it’s work and migraines. It’s a fucking depressing life.

The hospital only has an ancient migraine medication, which I haven’t taken since the 1990’s, and they keep saying “Maybe someone could bring in some meds from home?” But I don’t want that because all my meds are together in a train case and someone might just bring all of them in instead of picking through them, like I asked for – that’s what happened last time – and then they could take my suicide/overdose stash without my being able to stop them. I don’t want that; if they get me feeling better then fine, but if they don’t I want that option open to me, to be my own choice.

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Why is it so hard to eat?

i thought, maybe I have a migraine partly because I haven’t eaten. I mean, I’ve had a cup of milk or juice and a little fruit cup and some saltines, at most, at every meal but I realize that probably doesn’t count as Not Skipping a Meal where my migraine is concerned.

So I took the top off the hospital dinner to see if I could try it – chicken with broccoli, and pasta in tomato sauce – and got so nauseous. I got that rush of watery spit you get just before you are going to throw up and everything. I had thought that being in pain was so distasteful that eating might be less so, but nope, I just really can’t do it. I don’t know why – I don’t feel hungry, but that can’t be all of it.

It didn’t bother me when I was in the hospital before, and losing like 15 pounds in two weeks sure didn’t bother me, and tonight’s experience makes me feel like not trying again.

So I guess today is going to be a migraine day.

I woke up feeling tired and pushed my way through three loads of laundry and a load of dishes.  I had a Coke, and some coffee, and my Dexedrine, and I felt just exhausted. So I lay down for a rest with my blanket and the cat. Then I realize that it felt too good to lay on my left side. Like if I wasn’t lying on my left side, it would be hurting on my left side. Yep, got sneaking head pain approaching the left side.  And cold feet, check.  And now I don’t want to move because moving hurts. It’s only early evening   And I’m going to have to kill time somehow, because it hurts to look at light and it hurts to move and so I’m just going to be laying on my side waiting for the pain to stop, but it won’t stop not until I wake up tomorrow morning hopefully.

And this is why I don’t feel my quality of life is worth living.  The last headache I had was Wednesday. I missed half a day off work and went in at noon and tried to work all night and now here I am on Saturday, and tomorrow I’ll have a headache hangover but I’ll need to try and do productive things to get ready for the week.

I wonder what time that leaves me for fun? Well that’s a good question. It doesn’t leave me any fucking time for fun and my headache being unreliable means I can’t really join up for classes or anything that’s at a specific time without planning to have to miss a lot with little notice. People  have told me to go ahead and sign up anyway, that people will understand when they hear I have a chronic condition. That’s not even the entire problem. The problem is the agony it puts me into trying to decide if my head hurts this much now, how long can I last before I’ll be throwing up? Can I drive myself to the meeting? What if I stay home and my head doesn’t really hurt all that much?   What if I just power through it, but but I’m still sick tomorrow when I have to miss work? There’s no right answer, it’s just soul sucker of energy and it sucks to be in pain and it sucks to be in pain so often and I want to sleep… I think I could try and kill myself now if I had the means at hand, but I’m too sick to move.

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.