‘Sick’… Is Driving Me Crazy

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I recently read a great blog about what the writer has learned in 10 years of being sick.  It’s worth reading:

10 Tips from 10 Years Sick by Toni Bernhard
(What I’ve learned from 10 years of chronic illness.) 

Her first tip is to take time to grieve your old life and then create a new one.  I think this is what I’m trying to do now.  Whatever it is, it’s not easy and I hope I can adequately explain how I’m feeling and what I’m thinking.

Firstly, I don’t really think of myself as sick, so actually I nearly passed over this blog thinking it wasn’t for me.  Yes, I have Fibromyalgia and am in pain most of the time.  I am also struggling with fatigue and the inability to get refreshing sleep.  All of which are symptomatic of fibro.  I also have a mental illness (Borderline Personality Disorder – BPD) but that doesn’t make me consider myself as sick either.  But when my busy sister-in-law recently came and did my vacuuming, because I couldn’t manage it, I felt a combination of embarrassed, humble… and perhaps sick.  Maybe she helped me in more ways that one.

I stopped work in November 2010, after being diagnosed with Graves’ Disease.  This left me with a racing heart, eyes literally bulging out of their sockets, insomnia, a bulging goitre (an over-grown thyroid gland) and an all over body tremor.  Actually while it was all pretty unpleasant it was the tremor that was the most difficult to manage.  I struggled to hold a pen or type, and clients were welcomed by me shaking all over the place.  I was supposed to be the calm one.  They were coming to me for help.  It was just after the first and largest of our earthquakes, so to appear nervy was nothing unusual in this city.  But I was taking it at least 10 steps too far.

But I still didn’t consider myself sick.  I had a medical certificate to be off work but somehow I attributed my failure in the workplace to be more about my BPD symptoms (but again didn’t regard this as sick).  I was having difficulty working with my colleagues, and actually I’d got to the point where I regarded them all as fools that I wasn’t keen to work with anyway.  Perhaps my intolerance was related to BPD but I think it was also a reflection of how sick I felt physically, even though I couldn’t admit it.

Fibro followed, and while my symptoms of Graves’ eased, thanks to medication, I was faced with this never-ending pain and fatigue, so heading back to work hasn’t been an option.  Somehow though, it’s other people who are sick.  Perhaps people in hospitals, or with terminal illnesses or permanent disabilities.

The weird thing is that if you talked to my long-term friends and my family they would probably tell you I have been sick for 19 years.  Isn’t that crazy?  With perhaps the exception of the years I was at university, I have been sick with mental illnesses all that time.  I spent years in and out of hospitals.  Actually I have no doubt I was very sick at that time, but it’s still not how I viewed myself.  I think somehow I saw mine as a self-inflicted problem.  It wasn’t self-inflicted, but I felt I was to blame for some weakness that had caused this and the issues in my life that had led to mental illness, so how could I legitimately let myself be called sick?  This was all my fault, after all.

Sometimes when I’m talking, my words can’t keep up
with my thoughts.
I wonder why we think faster than
we speak. Probably so we can think twice.” 

– Bill Watterson

At this point I start to get into an argument with myself.  Don’t worry, I do this all the time.  I just hope you can follow because just in the past week or two I’ve started to think “hey, perhaps I am sick”.  Anyone who has fibro will tell you that this is not a nice way to be, and you spend a lot of your time feeling like the pits.  Basically it sucks.  Then another part of me pipes up with what I’m sure my doctor believes – that it is all in my head anyway.  It makes me so mad that this seems to be his attitude, yet I’m telling myself exactly the same thing.  Yes, I think that meets the definition of crazy (and I honestly don’t mind because I can see enough to know it is crazy).

So yes, perhaps I am sick but what happens now.  To be honest grieving my past life is hard because most of it recently I didn’t enjoy and don’t want to repeat (the last 19 years anyway), and what went before was mostly good but is just so long ago.  I get what Toni Bernhard means though.  Maybe now I have to accept that I am sick but the difficulty I still have is how do I move on and create a new life?

Fibro is a relatively new thing for me.  At this stage I can’t get any medication to treat either it, or the pain because of interactions with other medication I am on.  Added to that my doctor says he wouldn’t give it to me anyway because a lot of it can cause suicidal ideation as a side effect.  He won’t give it to me because of a history of trying to kill myself, although in my defence I would point out that it has been over 14 years since I tried.  Obviously some sins can’t be forgiven.  That makes him crazy in my books, but right now he’s the one with all the power – and the prescription pad.  And isn’t it crazy that medication that is basically anti-depressants and mood stabilisers can cause you to want to kill yourself?

I can’t get medication and I can’t afford alternative treatments and therapies, so I’m being honest with myself when I say the future isn’t looking so hot.  Creating a new life with sickness has a big question mark hanging over it.  I simply don’t know what is in the future and right now it seems impossible to set realistic goals for myself because I don’t know what is ahead.  Maybe in 10 years time I might be clearer?  But then I suspect I might also be very depressed.  Somehow I have to make a future for myself, so that I don’t end up depressed.  Actually right now, that is what I’m scared of the most.

I know that feeling of depression well and the last thing I want is to go back there.  Combine the unknown element of the future with the constant pain, fatigue and lack of sleep… and depression seems like a certainty.  The one thing going for me is that I know what I’m like.  I know what to expect from myself.  Unfortunately my track record is depression when I feel like I am stuck and without options.

But this is not some pity party, and if I can, I’m going to fight this.  Seems that while I can admit I’m sick, I better get in my car and head straight to my therapist.  Maybe between us we can fight this together.

PS.  I notice that Toni Bernhard has also written a book called ‘How to be Sick‘.  If anyone has read it, I’d love to hear what you thought of it.  Right now it’s on my wish-list but I’m not too sure just when my wishes will ever be granted.

The trouble with always trying to preserve the health of the body is that
it is so difficult to do without destroying the health of the mind.” 
~G.K. Chesterton


16 thoughts on “‘Sick’… Is Driving Me Crazy

  1. Firstly, have you considered finding a new doctor? I know that kind of process is lengthy and a major pain, but it sounds like the person you’re seeing now isn’t really listening to or helping you. Even worse, he sounds like he has a condescending, judgmental, and frankly unenlightened and outdated, attitude toward you. I don’t know anything, really, about the health care system in NZ or if you have insurance, but if you can find another doctor, I think it would be a big act of kindness to yourself to get away from someone so belittling.

    Secondly, I think there’s a difference between recognizing and being aware of sickness in your mind and body — that’s a good thing — and identifying as sick, which I don’t think is healthy. I rather admire that you’ve not identified as sick. I think that indicates your more concerned about being accountable for managing your various symptoms as best you can, and that you’re not getting weighed down by labels like “sick.” As for your future, of course you have to be realistic about what it may bring, but the future is ultimately unknowable. Make plans where you can, knowing you may encounter various limitations, but don’t over-anticipate those limitations, either. Then you’ll end up paralyzed by things that haven’t happened yet and your world shrinks out of the realm of possibility. You have too much life and vitality to do that to yourself.

    Sorry if I’ve gotten preachy or I’m telling you things you’re already well aware of. You’re too smart not to have considered these things — please don’t think I’m trying to speak to you as if you haven’t. I just think you’re terrific and that your future may hold incredible things, despite the threat of various illnesses.

    1. Thanks Eileen and don’t worry I didn’t take any of it as preachy. I know preachy when I encounter it and that wasn’t it. Actually it all makes a lot of sense and is something for me to think about. Thanks. As for the doctor, I woudl love to change. Actually I left him last year only to strike a doctor who was so absent-minded that she kept putting me on meds she shouldn’t have and I ended up with lithium toxcity. It wasn’t nice and I vowed never to go back to her. And that was only one of my horror stories from her. I think we have a shortage of doctors here because it is super hard to find one’s who will take new patients, let alone are any good. So I went back to my current doc out of desperation (not that I told him that!) but I am getting desperate again. I can’t believe his attitude. What does he think I am? And yes, I meant ‘what’ rather than ‘who’. I think he fails to see me as a human being. To run a long story short (ish) I think you are right and I’m going to have to find someone, but who knows where? Sorry, that’s a bit of a rant. 🙂 I so appreciate your words that I inflict you with that. Sorry.

      1. Honestly, no need to apologize. I can rant with the best of them, so it doesn’t bother me. Besides, when I was reading your post, I was getting ticked off by the information you were sharing about your doc. I’ve never met the man, but I don’t think I like him at all. No doctor should inflict stigma on you or ignore your needs or just be plain insulting like that. Do no harm, idiot. Do no harm! Besides, just b/c he’s got the MD doesn’t mean he’s the expert in your mind or body — you are!

  2. I also don’t really know what to say and have no profound words of wisdom. All I can say is that I understand and identify with some of what you’re going through – I’m not working, can’t afford alternative therapies… have a hard time thinking of myself as sick, even though I have ME/CFS and fibro. 🙂 Just do one day at a time and thanks for sharing the ’10 Tips’ list – I look foward to reading it!

    1. Hopefully, and somehow it actually helps me too but ostly I just believe we need to be more open about this stuff so that hopefully one day it will be more accepted in the world. Maybe I’m dreaming…

  3. Good to hear that it helps you too. I applaud you for standing up and educating others. I think people are slowly started to accept it. Sometimes, the networks use celebrities who suffer from depression, to urge others to seek medical attention. So bit by bit, people will begin to understand and hopefully, accept it.

  4. Pingback: Being ‘Normal’ With Mushrooms… For Mental Well-being | Infinite Sadness… or hope?

  5. Pingback: A Letter of Fibro Musings | Infinite Sadness… or hope?

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