Time flies when you’re living life

It’s been a while since my last post, and really I don’t have much in the way of things to say right now. That’s a good thing, by the way. For the first time in months, I have been too busy to write as opposed too sick – and that is something I am pleased about.

Based on the polls from last time, I will be posing on Wednesday’s, and will aim for every fortnight. Thank you so much for voting and for your feedback. I’ll definitely be attempting to cover the areas most popular areas!

Timeflies

You can make this beautiful clock. Click the photo to find out how 🙂

For the time being, posting frequently is tough for me. I’m trying to rebuild my life, trying to come back from wherever I have been for the past year or so. It’s surprisingly difficult, even when you’re health improves, to actually re-engage in life. Taking on responsibilities, going back to work and trying to still fit in all the home-grown rehabilitation I do has been a challenge. It’s not easy going from being unable to do much, to being able to actually live life again. Even though it’s different, slower, slowed down, I’m not resentful of that fact. I’m grateful that finally I am here. Finally I can do more than just lie in bed and be a burden on myself and everyone else. But even so, I’m finding it stressful to have to do things again. It’s hard to juggle the every day aspects of life with a chronic illness. I’m sure that’s something any of you who have a chronic illness (physical or mental) can relate to. It’s not stressful because I have to do things. It’s stressful because I haven’t been doing them, and I’m trying to balance my health problems with my desire to live the fullest life possible. So far it’s going well. But I have noticed stress builiding up and it’s an uncomfortable feeling. Stress comes with its own set of problems too: it triggers both bipolar episodes and Lupus. So in addition to being stressed, I’m finding myself worried about being stressed and the impact that will have on my health.

If you’ve had time out from life for a while, how did you re-engage in life again? Do you have any strategies or tips for managing the stress associated with re-entering the world of the living?

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Medication Frustration

“I’m thinking of beginning the reduction again”.

“I think stay with 200mg for the time being, because you are so physically unwell, it just doesn’t seem a good time”. That’s my therapist’s very reasonable advice.

I swallow it and we move on. But I’m frwhite-pills-and-bottle-220ustrated. I don’t want to just stay here for the time being, because how long is that? The time being could be 3 months, or 6 months, or 2 years or more. I could be unwell for the rest of my life (not likely but not impossible). There might never be a good time to do this. By the time I feel well enough, I might be 30 years old and just starting my career. In three years, I could be dead. Again, not that likely, but definitely not impossible. But I suppose if I meet an untimely fate it won’t matter whether I was on Quetiapine or not. It won’t make the obituary anyway.

Bipolar Disorder is definitely a challenge, anyone who has it will agree. Some people say it’s the worst thing that happened to them, and I don’t doubt that for a second. But this autoimmune extravaganza is the worst thing that’s ever happened to me. In my journal I wrote:

Every day is a burden. A heavy weight on my shoulders, even if it’s just the fact I need to wash my hair. I’m so tired of being tired. I’m so sick of waking up in the morning and being exhausted and having to get up anyway and thinking “oh it’s yet another day of the same old shit”. I’m so tired of going to bed at night not wanting to go to sleep because then I will have to wake up to yet another day with little improvement and little to look forward to.

Every day is the same. I wake up with a brief moment of respite and I think “today will be better” and then I get up. I eat. I rest. I do my walk. I do my stretching. Then I rest some more. I barely do anything in between. I might read, or watch TV. Maybe a few hours for my job. I’ve barely been writing because the fatigue drains me of creativity. I want to write but I don’t do it. Because I feel so tired. Because I have no motivation. Because I can’t think of anything to say or do and when I do it never seems to come out right. And now the pain, the pain is back and it reaches into every corner of my body and it aches, all over, everywhere. Until just being is uncomfortable. Even when I’m more accepting of this never-ending situation, it’s still like ground hog day. The same routine beckons me. The same uncomfortable body and the same four walls surround me.

I don’t feel like myself. I feel nothing like myself physically. Mentally, I feel like my depressed self, my angry self, my bitter and twisted self. My mind doesn’t feel normal. It doesn’t feel like my own. It just feels like it isn’t even there. My body feels like a prison. Like a dark, sealed coffin that I’m trying to get out of, and I’m banging on the lid and trying to break out or get someone to hear me. But no one does. There is no one to help, no one to get me out of here. No one is coming. And I’m so weak I can’t get out of it, I can’t lift the lid and live my life. There is nothing anyone seems to be able to do. And it’s frustrating because all I want is something to make me feel better, to get me out of here so I can get away from this body and the pain and the weakness and the overwhelming tiredness that dogs me every single day.  – 26 July 2013

It sounds like depression, but it isn’t. This is the reality of debilitating fatigue. This is the reality of Lupus. My mood changes as my physical health does. On days like today, my health improves a bit and I feel happier. I can talk, I can smile, I can laugh. I find myself questioning whether it could be hypomania because I am so unaccustomed to feeling anything but fatigued.

I’m so frustrated because I want to find a drug for this disease that will bring me back to life. A drug that will make me well, so I can go back to being a relatively normal person who works from 8.30am-5pm and complains when the printer at work runs out of ink. I want to be able to walk for more than 15 minutes. I want to do a full length yoga class. I want to run. Hell, I want to stay out all night with my friends and get drunk and be normal. Totally, completely normal.

I’m frustrated because I want off this Quetiapine. Because I worry that it triggered off this autoimmune nightmare. Because I want to have a baby one day, no matter how impossible that seems right now, and I can’t be on Quetiapine when I do it. Because I want to see if I can cope without psychiatric medication. I want to know if it’s possible. I want to know who I am, what I really look and feel like, without drugs to cloud that vision.

But it’s on hold. On hold, on hold, on hold. On hold in 2012 because I stupidly stopped my contraceptive pill and became hypomanic and then because I was so physically unwell. And then because I found out the Olympian cheated on me and I was beside myself with grief. Now because I’m more physically unwell than I ever have been in my life and being this unwell is a risk factor for depression. Not for mania though. I couldn’t possibly become manic. I’m far too exhausted for that.

Reducing Quetiapine: Slow and Steady Wins the Race

I started The Bipolar Project with the intention of tracking my reduction of Quetiapine Fumarate (aka Seroquel). Since reducing the drug in 2011 there have been various issues that have prevented me from reducing at a steady rate throughout the past two years. In fact, in 2012 I didn’t reduce it at all.  Some of these issues have been Bipolar related but most have been completely unrelated circumstances that impacted on my emotional health, left me stressed out and miserable and my life just a little too chaotic to embark on a medication free life.

Slow and steady

If you’ve been with me from the start, I was initially on 400mg. I managed to reduce that by 125mg throughout 2011. When I stopped my contraceptive pill and my mood went haywire, I upped it back to 300mg and left it there for over a year. I started reducing again about four months ago and am now down to 206.25mg nightly. This quick reduction had minimal effect on my mood (apart from taking me a bit longer to fall asleep and feeling a little more tired the next day).  When I reduced it a couple of nights ago I noticed I was a little more irritable for two days afterward.

When I first started I had a number of rules: no alcohol, regular sleep pattern, exercise vigorously and regularly, only reduce by 6.25mg at a time. At the time, exercise was a major mood stabiliser for me and I noticed resistance exercise, like lifting weights, was better for my mood than just cardio.

Now, I’m too unwell to do vigorous exercise and resistance exercises are pretty much out of the question. Surprisingly, that doesn’t seem to have negatively impacted on my mood during the reduction. But I’m still exercising (I walk and do yoga pretty much every day – less than 30 minutes all up), but not the way I used to (spin classes, weights, long horse riding sessions, full length yoga classes).

There haven’t been as many positive effects this time around but these are probably being masked by my poor physical health. I’m so fatigued all the time that if being on less Quetiapine is making me less tired and improving my concentration, then I just don’t notice it.

I’ve slowed down the reduction again because I noticed I was getting pretty emotional, probably because I was extremely anxious and moderately depressed. Again, these seem like pretty normal responses given the events of the past year but ultimately, if my mood is unstable, it doesn’t matter what’s causing it – the reduction must be slowed down. Within the next week or so I plan to bring it down to 200mg and leave it there for a few weeks.

If you’re on psychiatric medications and have tried reducing or stopping your drug, what have you experienced?