Enough

I have been having a pretty hard couple of weeks in my head.  I’ve been trying to keep things together and not burst into a fit of complaining and tears but the only way I know how to do that is to shut down emotionally and just carry on…one foot in front of the next…day after day.

The sleep has been overwhelming and I’ve had more sleep-attacks than usual.  They’ve been lasting much longer too…yesterday I was working in my office standing up because I kept falling asleep in my chair.  When I stood, I’d start to fall and it would wake me by reflex, which was the only thing that was working.  I tried everything else and nothing worked in the least (ran around, took the stairs to the 6th floor and back down to increase cardio, splashed cold water, stood in a freezing cold room with wet face and hair, ate a load of sugar and carbs, talked to people, walked up and down the hall, listened to really loud music on my headphones….).  The best I could do was put myself into a situation where I’d hurt myself if I fell (not badly, mind you) which forced my brain to protect my body by waking me as I fell.

This is getting dangerous.

I don’t drive often anymore at all, even though I tend to be okay in the car for some reason.  I’m just too afraid I will be so tired I’ll stop paying attention.  It makes life difficult because I have to wait around for Dayne all the time but I’d rather be safe than accidentally run someone over because I’m in a haze.

Yesterday was so bad though.  Worse than it’s ever been.  I did make it home and fell asleep with my shoes on, handbag still on my shoulder, sitting up.  Out for the night too.  I woke up several times because my neck and back are really sore in this cool, damp weather we’re having, but barely stayed awake for a minute before falling asleep again.  I woke from dreams exhausted.  But, back to yesterday.  (I’m avoiding the subject…it really makes me feel like giving up).

I have called the sleep clinic dozens of times but no one ever answers…it’s just a recorded message that no one ever seems to check.  I’ve emailed the doc who is seeing me three times with no response.  I tried one more time, in a fit of sleep, just asking them to please confirm my appointment and let me know if I’m actually on the cancellation list since I’ve received zero calls in quite a few months.  She called me back this time, the secretary, and although she didn’t apologize, she did explain why I’ve been ignored.  I was floored.

First – this is not an appointment for a sleep study, like my family doctor told me.  It’s just the fucking consultation with the specialist to see if she thinks I need a study.   I was given an appointment that was a year out from when the referral went in.  When I thought it was for a study, I kind of understood….there are only so many rooms available and since we’re in Canada, these things are covered for us so wait lists tend to be very long when there is no cost to the patient.  What I really got, however, was an appointment for a consult that was a year out.  I work in health care.  I know the game.  What happened was that my asshole family doc didn’t give much info on the referral and I was triaged as the lowest priority possible.

(Pause to panic and rage and nearly cry and then….numb again)

I waited a year and no one bothered to tell me that it wasn’t even the study I was waiting for.  ffs.  So, this means I’ll meet with the doc, who is a respirologist, by the way, and I have no concerns about sleep apnea but I was thinking that it might just be how it goes for sleep studies, and she will then decide if I will have a study done.  I’d imagine that will take another few months at least.

This happens to me all the fucking time.  No one took the back pain seriously – it’s just pain right?  No one ever cares when you’re in pain that isn’t going to kill you.  I went to see so many specialists and in the end nothing happened.  Well, I was laughed at, blown off, dismissed, ignored and condescended to, but nothing constructive or helpful happened.  Eventually, after years of heavy drugs, I just took things into my own hands and forced myself to deal with it and move on.  That’s about where I am now in that department.  Now, this.  I get it….sleeping constantly isn’t the worst thing in the world.  Not sleeping is definitely worse than always sleeping.  Dreams aren’t a big deal, even when they’re psychologically torturous, and falling asleep on my feet well, even the pain is worse sounding than that particular symptom.  The only thing that is truly messed with is my quality of life (between the pain and the sleep issues) and that’s not medically concerning enough for anyone to take seriously, apparently.

I feel so insignificant right now.  Insignificant and stupid for putting a tiny bit of faith that my doctor was actually trying to help.

So yeah.  I made an appointment last week for this coming Monday to see her on unrelated issues but I’m going to bring this up.  She’s made me sit here and suffer for more than a year with this sleep trouble (and I waited until it was really affecting me before I even asked for help).  She made me sit through years and years of pain and although she was constantly farming me out to different specialists she didn’t do much else.  Just kept pumping me full of narcotics and antipsychotic medications and made me ‘wait and see’ more times than I can remember.  Dayne is going to come with me because he won’t put up with her dismissals like I do…he’ll tell her straight how much this is affecting my life and, hopefully, she’ll help.

I’m going to tell her I either need help or I need her to write me off work (she was only willing to slightly reduce my hours when I was in so much pain I could barely walk so I don’t know how effective that’s going to be).

I don’t know what to do.  Do I just do the same thing I did with the pain?  Give up, suck it up and decide that I’ll just have to spend the rest of my life carrying this around?  I’ll wake up every morning hurting and the more I move the worse it will get and that’s that until I die of old age?  Do I just have to deal with the falling asleep on my feet for the rest of my life?  Will I just have to sleep from 530 pm – 600 am every day and then sleep through weekends so I can function?

So then, no quality of life for Grainne.  I’m going to have to sleep away half my life while I spend the other half depressed and in pain.  Why am I even trying?  Why don’t I matter?  Is this really no big deal and I’m just blowing it out of proportion?

Okay, so now I regroup.  I’ll try to fight back this hopelessness, depression and anxiety.  I’ll try to feel like I matter just like everyone else in the world.  I’ll ignore the feeling in my stomach and the thoughts that keep echoing through my head and I’ll just pretend that the pain that is flooding my nervous system belongs to someone else.  I don’t have a body.  I don’t have a spine or a neck and the pain I feel isn’t really there…isn’t really mine.  I’ll stand up every few minutes when I start losing consciousness and I’ll tell myself that 11 hours isn’t really that much sleep every night.  I’ll sleep the entire weekend so I feel rested for a while and I’ll appreciate it when I do, rather than feeling like I’m wasting my entire life behind closed eyes.

I’ll just live in my dreams.  What else is there to do?

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

13 responses to “Enough”

  1. paindepression says :

    Have you brought up Narcolepsy??? It sounds like that to me, my grandpa had it and he fell asleep anywhere all the time. Why don’t they give you an amphetamine? Something that will help you stay awake? I hate how we are ignored until it is all too late! Try to find something, anything, to be positive about. I know it is extremely difficult, but anything at all can help some. Hang in there! You are always in my thoughts…

    • Grainne says :

      Thanks sweets. She is actually the one who told me she thought I had narcolepsy and then said she had ordered the sleep study to confirm. :S I think that’s what it is too. xoxo

  2. Birdie says :

    No, no, no! I can’t believe you waited all this time and you are only getting a fucking consult! I will say that when you see him you will be triaged to the quickest appointment. Your doctor doesn’t sound like a doctor at all. Can you bring any of your sleep posts for her to read? Fuck. I don’t know. This is all total bullshit.
    And, no. You do NOT have to live this way. Do not give up. Do not.

  3. K says :

    Hello my dear,

    I’m so sorry you’re going through such a difficult time 😦 I can’t imagine just how debilitating that must be! And I’m so frustrated for you with how long it has taken to get help. Can you change your family doctor? You are not getting the help you need and it makes me so angry!! Let’s see if your doctor could live even a week with the problems you are having!!

    In Canada do you need to be referred to a specialist through your family doctor? How difficult is it to get a new family doctor? Sorry I really wish I could help! Emergency Medicine is a completely different ball game than primary care (your family doctor) and although it’s easy for me to blame them for not catching your problems sooner, diagnostics is a bitch… But whatever the case, you have definitely suffered for too long and you are in a very dangerous situation!

    Sending you lots of love,
    K

    • Grainne says :

      Thank you, lovely, I do appreciate the empathy and support! My family doc is a bit of a foot-dragger and always has been. She’s been my primary for about 20 years and has an annoying history of ignoring my complaints, aside from the mental health issues, thankfully. She was quick to act on those complaints but that is her field of interest. She told me she would have specialized had she not been in Such a rush to open a practice.

      Here, across the country and particularly in my province (big population) we have a national wait list for family doctors. There are thousands of people who do not have a primary GP, including some very sick ones. They opened up ‘walk in clinics’ across the province to help with the overflow and these clinics can refer like a regular GP even without a case history but, as you can imagine, they are not often taken terribly seriously unless the problem is urgent, in which case the patient could just want directly into Emerg anyway. Having a primary who has a history on you is like gold around here.

      The system is such that you cannot see a specialist of any nature (including ob/gyn!) without a referral. Patients are triaged based on their referral and preference of the specialist and, bam, you have a two year wait list for “D” patients who do not either interest or sound serious to the attending. To be fair, referrals are given out all over the place for poor reason. I used to work in a neurology clinic and we’d get constant referrals for “undiagnosed dizziness” when we were treating MS, ALS, and MG patients, one packed on top of the next in 10 hour long clinics.

      I can see both sides. I just sometimes wish things were more obvious or serious so someone would actually take a moment to help me in this medical community. I’ve worked with these people for 15 years….I hate to think what some other patients go through at times.

  4. Ellen says :

    Just a thought – have you tried Wellbutrin or any of the more activating anti depressants? Wellbutrin really woke me up when I was taking it.

    The Canadian medical system sucks sometimes. They’re good at some things, but if you have something unusual that’s not life threatening, it seems like they don’t want to know about it. I mostly use alternative practitioners myself at this point, but they can be pricey.

    You’re coping awesomely – I don’t know how you do it.

  5. The Sound of Ed's Voice says :

    Why didn’t you email me? Lady I am so sorry! This is absolutely stupid. I hate to say it but you can always pull the –this sleep is making me want to do crazy things card. That usually gets things done faster.

  6. L. says :

    “Why don’t I matter?” I was asking this too, this past week. We do, of course. You do. I hope you can get backup from friends in dealing with doctors and otherwise demand and grab and wring out every bit of useful help you can get from the medical system and every other hustle we have to deal with. You deserve better.

  7. Birdie says :

    Just stopping in to see how your appointment went. 💐

  8. Birdie says :

    That’s from me, Birdie. 💐

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