I desperately want to be able to work, but I can’t. Here’s why:
1. My illness is unpredictable.
Some days, I can function reasonably well. Other days, not so much and some days, not at all.
2. I am unable to maintain stability for long enough to work.
I have rapid-cycling bipolar disorder.
3. Stress and tiredness make my illness worse. I might be able to work two or three shifts. However, this would impact my health and I would spend days or even weeks recovering.
4. I am unreliable due to my illness.
I cannot maintain consistency as my moods fluctuate so much.
5. I have anxiety and panic attacks.
Some days, I can’t even leave my house because of this. I’m worse in public, especially if I don’t have someone with me.
6. I often need to be somewhere familiar and with someone I trust.
I need this to manage my anxiety and to help keep myself safe.
7. I have problems eating.
If I’m not at home to eat, I need to be with someone who I trust. Otherwise, I panic and am often unable to eat at all.
8. My medication has bad side effects, including a tremor and extreme tiredness.
I have to sleep a lot more than normal, including during the day to function. My medication and my illness often prevent me from driving too, which is very restrictive.
9. I must keep regular appointments with my mental health professionals.
This helps to help to maintain my mental health and/or to prevent further deterioration if I am unwell. This is vital. A missed appointment can at worst lead to a hospital admission.
Which brings me on to one of the main reasons I can’t hold a job down:
10. I have to sometimes be admitted to hospital and crisis units.
These inpatient admissions have been and are sometimes necessary when I become unwell either with mania, depression, or eating issues (whether I like it or not and sometimes whether I cooperate or not.)
So despite very much wanting to work, I hope I have been able to explain some of the reasons why I can’t. Oh and before anyone judges me for not trying, can I just mention I have tried being in employment many, many times. I have worked on and off since the age of 16 in various jobs.
I also managed to do half of my psychology degree before having to drop out due to my illness. Clearly, I’m not totally unqualified and obviously, I’m always trying. I do what I can when I can.
So next time please, don’t be so quick to judge someone who isn’t working. There may be many good reasons. It certainly doesn’t mean they don’t want to.
I’m right in the midst of a pain flare up of Complex Regional Pain Disorder (CRPD). And painsomnia is a brutal part of that. This is a rare disorder so many people probably don’t even know what painsomnia is. It’s when you hurt so badly you cannot sleep. I can’t even lie down. Lack of sleep, unfortunately, increases pain, fatigue, brain fog, allodynia and so much more. Not sleeping makes a flare up worse. A flare up makes sleeping impossible. It’s a vicious cycle that does nothing but make me mad and feel depressed. And tonight I’m experiencing all of this. I can’t even cover up because the blanket hurts and my clothes feel like they are rubbing against an invisible sunburn.
I can’t stop crying 😭
#CRPDawareness #ChronicPainDisorder #HateMyBody
Pain medications are both a blessing and a curse. I take morphine and Percocet on a daily basis to treat my chronic pain. My body has grown tolerant to very high levels of medications in every shape and form. I take my prescribed dose at The prescribed time every single day.
But sometimes life happens and I end up taking them later than normal. Sometimes I take them earlier than I am supposed to. And sometimes, like today, I take more than what I should. Either my pain level is totally unbearable or I am utterly exhausted and I just need to sleep.
Which is what happened tonight. Insomnia is a major issue for me and sleep is not something that comes natural. I have not slept without the aid of some sort of chemical combination in many years and I hate that.
So I took some extra medications tonight with the hope that I would go to bed and fall asleep right away. I crawled into bed next to my husband and he cuddled into me from behind. I closed my eyes and started some deep breathing to help me relax and wind down but then my head started to feel funny. It was an instant headache. And then my stomach began to burn.
My heart sank. I wasn’t going to get a good night’s sleep. I knew right away that this was going to be a miserable night.
It’s now 2am. My ears are ringing. My entire head hurts in ways I can’t describe and I’ve thrown up 3 times and I know it’s not the end of it. I really screwed up tonight. Taking extra medication is one thing but I really went overboard tonight and now I’m suffering because of it.
It’s my own damn fault.
I’m going to die too soon.
I should write a will. Nah. I don’t have anything of value.
I’m such a terrible mother to my fur babies. Such a failure.
How am I going to survive spending 4 days travelling next week? Holidays should be fun.
All I do is worry. Worry, worry, worry.
I hurt. I wish I didn’t hurt. I hurt so bad.
Damn it, I forgot to put the clothes in the dryer.
I’ve spent too many nights of my life being an insomniac. Pain keeps me awake, but my active brain does a pretty good job of that, too. It’s dark at night, it’s lonely and I feel like there is no one else in the world awake, even though logically this makes no sense. My mind plays tricks on me. I’m tired all the time but I just can’t switch off. I have been through many phases of taking different sleeping pills, but even then I just wake up feeling groggy and like haven’t slept for years.
The night brings out the worst anxiety; in the light of day I can rationalize, but the darkness brings with it a heavy depression that is pretty tough to shake. I worry. A lot. I don’t consciously think of anything, my mind just wanders from subject to subject.
I try to survive another dark night. I’m scared to go to bed, frightened of the battle with my body and brain. I don’t want to lie awake all night yet again. I lay there wondering what I did to deserve this. I’m a good person, I’m kind and compassionate. I have made mistakes like everyone, but this? What did I do to deserve this? I wonder about karma and the many gods I read about. Why do I feel like I’m being punished? Why me?
I just want to lie without pain, and sleep without repeating the same battle each night. I do everything right, have tried every suggestion anyone has ever thrown at me, but none of it works. I just can’t sleep and the longer the battle rages, the darker the corners of my mind I find myself in, trying to escape this hell.
The constant exhaustion that comes with being sick all the time is impossible to describe to anyone that hasn’t felt it themselves.
It’s beyond tiredness.
Beyond having flu for a couple of weeks.
There is no end and the beginning was so long ago, it’s impossible to remember a time that I didn’t feel like this. The fight with the dark feels impossible to win, night after night, trying to switch my brain off, trying so hard to find that happy positive part I know is there within me, but I lose it whenever the sun sets.
Am I going to get worse?
Will my heart stop beating?
Will I slip away while I sleep?
What will happen to my dog?
What will my husband do without me?
How can I save myself?
What can I do to fix this???
I long for the sun to rise, its warmth not only heals the world but also my tired, aching body and brain. I begin to relax as the hear birds begin their day outside my open window; I hear hope once more, arriving with the daylight. My body finally gives up and my mind clears enough for sleep to take over for a few short hours.
I wake up shortly after, groggy and heavy, my limbs weighed down and stiff as I struggle to stand, smile and face another day.
My day begins with the usual chaos that my labrador retriever brings: barking, whining as she impatiently waits for her morning kisses and snuggles, squeaky toys from one end to the other, and the madness of her hyperactive personality. I remember why I don’t ever quit, why the darkness will never be strong enough to absorb me. My amazing husband pulls me to him and kisses me on the lips. “How are you feeling hunny?” With tears in my eyes I tell him that I’m ok.
It’s incredible how my little family can create such distraction from the pain and my irrational worries. I smile, again.
The darkness may be strong, but I am stronger.
Lying awake a lot these past few nights, struggling to find some sort of relaxation, but obviously failing. One of the hardest things to come to terms with is that everything in my life is going so well but my mind is sinking deeper and deeper into that dark hole. The guilt that rises with being “unstable”, being caught up in the whirlwind of bipolar disorder, is why I’m lying here right now feeling so lost and so alone.
One might tell me that it’s ok not to be ok.
But that’s the thing…. I HAVE to be ok…..if I’m not ok then other things are not ok, things outside of me are hugely affected. I have so many roles to keep up, like wife, parent, dog trainer, cook, cleaner, banker, secretary, dishwasher, etc. I’ve been doing great at maintaining it all. Stable on meds. Working routine. But the “symptoms” that have been creeping up on me are infiltrating all of that now, making every single individual task that I do seem almost impossible. It’s not so easy to hide behind anymore.