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.
February 15th, 2018 Day 11 – Morning Its so nice to see the sun shining today. It’s an instant mood booster. It was also really nice to be able to take Zoey outside to do her pee and not be standing next to her, shivering in my boots. The cold temperatures these past few days have actually been painful. I think Zoey is finding this nice switch in weather encouraging as well because she ate a decent sized breakfast and drank a half a cup of water without me having to push her. I couldn’t help but sigh with relief. It’s not easy trying to force a dog to eat! We walked all around the garden and I’m pretty sure she had to stop and sniff after every couple of steps. When we got back inside she just collapsed on the porch mat. Her strength comes in bursts and doesn’t last long so sometimes she isn’t able to got any further than the porch so I let her rest for a while before walking her back to her bed in the living room where she’s now sound asleep. And since Buddy is also curled up napping I think I just might take advantage of this and take a nap myself.
February 15th, 2018 Day 11 – Afternoon Zoey had 30 minutes of ‘freedom’ today. I clipped her leash on and let her sit outside since it was so beautiful out. But I’m really regretting it because she got chilled. I guess with her fur being shaved and the fact she was lying on the bridge without a blanket, she got cold. I really didn’t think it was cold enough to be concerned but I was obviously very wrong. After she came in and was back on her bed her entire body began to shiver. I wrapped her up in a big fleece blanket and she immediately started to pant. I got down on the floor with her and held her as her entire body was having spasms. Of course I panicked and started crying because I felt so guilty. I had caused this to happen. I should never have let her spend that half hour lying on the patio. She’s not up to that yet. I should have known the difference!! I let a bit of sunshine go to my head. The shivering caused full body muscle spasms and it was painful, which caused the panting. Dogs pant for many different reasons and anxiety and pain are among the top ones. Which is why Zoey was shivering and panting at the same time. It was actually painful for me to watch it and knowing that it could have easily been avoided has made me feel like the worst dog mom out there. After being wrapped in the blanket and me rocking her in my arms for a while she relaxed and fell asleep. *sigh*
February 16th, 2018 Day 12 Not the best of days by any means. Zoey decided to go into full blown starvation mode and refused any and every ounce of both solid food and liquids. I had calls with an on call emergency vet from the VSCNL hospital as well as with the Gander veterinarian. If her intake doesn’t improve over the weekend she may be admitted to be hooked up to an IV. She has had 2 episodes in the last 2 days that has scared me so much that I’ve got myself convinced that she’s dying. She starts shivering so I cover her up and then she starts panting, as her entire body continues to spasm. I’m so scared at this point that I’m afraid to fall asleep because I don’t want her to die alone. I hope im overreacting …. ? Her sugars may be dropping from the lack of steady nutrition. Panting is also a sign of pain so the shivering may be painful for her which is why she pants at the same time. We also discovered a couple of reddened areas which are of concern so that’s something else we have to keep a close eye on now. Thankfully I did manage to get some food into her by supper time. Chicken broth and water (half and half) poured over some shredded chicken. All together she’s had 2 cups of fluid. Not as much as I want her to have but it’s better than nothing. I’m concerned that she’s getting depressed now too. She reminds me of eyeore. Even the way she walks is similar. She’s bored. You would be too if you were lying down all day long for 12 days straight! I’ve tried to get her to chew on bones but she turns her head. Buddy brought her a toy this evening and laid down in front of her and it broke my heart. He looked back at me as if to say “Mommy why won’t sissy play with me?” Seriously. I don’t know how much more my heart can take.
February 17th, 2018 Day 13 Today was a good day. Zoey still needed a lot of encouragement but finally managed to eat a bowl of chicken broth, water and pedialyte with shredded chicken and a spoonful of rice added to it. And we discovered that in the midst of the excitement of playing in the snow she was willing to eat a pocket full of dry kibble with no hesitation. If I have to take her outside to feed her then so be it! She was also the most relaxed I’ve seen her yet. While lying on her bed this afternoon she turned on her side and actually stretched her legs out. Big step towards her recovery!
February 18th 2018 Day 14 David was off today so it was really nice to have him home all day. Zoey loved having her daddy home. They even had a nice nap together on the living room floor. One of my favorite sounds ever is of Zoey snoring. It warms my heart because I know she’s resting and she’s content. She ate dog food for her dinner. Her regular kibble that she hasn’t eaten in a long time. And she actually seemed to enjoy it! Except she threw up afterwards. I’m guessing that it’s because she hasn’t been eating much solid food and it may have been too heavy on her stomach. She took her Tramadol (pain medication) wrapped in a piece of cheese without any hesitation. She has always loved cheese and thankfully she still does because it’s great for wrapping her pills in. Zoey has been doing really well on her legs. She can stand up from a lying position without having to be lifted by the harness. At first she had to be lifted up and then held in order to walk but now she can walk alongside of me with having to be supported. I take her for walks out around the yard and she’s doing fantastic. She walks very carefully because she’s still really unsteady but her tail wags like crazy with every step she makes. She often looks up at me looking for that bit of reassurance and when I smile at her and say “good girl” she looks so proud of herself. And so she should! She has so much to be proud of! She has suffered and survived so much pain in the past 2 weeks. She is doing amazing despite how awful she feels. And I am beyond proud of her. She’s mom’s girl!
February 19th, 2018 Day 15 Zoey continues to amaze me every single day. She continues to get stronger with each passing day. There is no doubt in my mind that this surgery was a success because she is already walking better than what she did before having this done. Her limp is completely gone. She is still very weak and her legs shake when squatting down to do her pee but thanks to her harness we are able to hold on to her so that she has that security in knowing we won’t let her fall. I’m glad Zoey feels safe with me. I’m glad that she feels secure and trusts that I won’t let her fall. I want my dogs to know that I will always protect them and that they can always lean on me whenever they are scared. Buddy has been very confused about everything that’s going on. He doesn’t understand why we are doting on Zoey so much. Why we often have to push him away when he tries to get Zoey to get up and play with him. How do you explain something like this to a dog?? God knows I’ve tried. If you only knew how much I have talked to both of my dogs during these past few weeks. I’ve sat with Buddy on my lap and as I scratch his ears and he stares at me I tell him things. I tell him how incredibly proud of how well he has behaved lately. I tell him that sissy is sick but she’s going to get better really soon and they are going to have so much fun this summer. And I swear, as Buddy listens, he is understanding. Intelligent would be an understatement in describing Buddy. Same with Zoey. She wants so bad to get up and go. She wants to jump up on the couch. And having to say no to her is so hard because she wears her emotions on her face. She is the saddest looking dog I’ve ever seen. Her eyes tell it all. But I talk to her. I tell her everything that happened in the hospital and what Dr. Bailey did to her legs. I tell her that all the pain she is in now is going to go away. And when it does she’s going to feel better than she has in a very long time. And that I am going to fill the backyard with more balls than she has ever seen before for her and Buddy to run around and play with. Then I smother her with kisses. Yes. This has been one hard road. But to be able to get to a place where my girl can walk and run and play again … that is our ultimate goal for Zoey’s Journey.
February 20th, 2018 Day 16 It was 2 weeks ago today that Zoey had Bilateral TPLO surgery and we had her in to the vet for a check up today. Dr. Goucie was very impressed with her current state. She said that many patients that come in for their two week check up and end up going home with her antibiotics and have to get some extra tests done because they aren’t healing properly. She said that many dogs that have this surgery, especially when it’s done on both legs at the same time, usually have some sort of complication along the way. She said that she has seen very few incidents where a dog gets this surgery and are able to make it through eight weeks of recovery without having some sort of bumps along the way. She was very pleased with how Zoey was able to stand in one spot for a minute without her legs giving out on her. Zoey’s ability to go from a sitting position to standing position without having to be lifted is an amazing accomplishment for the two week mark. Her fur is growing at a healthy right and all of the itching that she is currently experiencing is quite normal because as the hair grows it’s irritating her. Her ears look great. Her eyes are slightly bloodshot, which is due to her crying. Her teeth look fine and the colour of her gums is nice and pink, showing that she is not overly dehydrated. Her nose is also a healthy color.Dr. Goucie was sitting on the floor with Zoey while we were chatting and Zoey sat in an upright position almost the entire time. That is huge because it’s a position that puts more strain on her legs but yet that’s the position she chose. After about 5 minutes she laid down and the dr. looked at us and smiled because she lasted five minutes sitting up on her own. Then as we kept talking the doctor was massaging Zoey’s legs and she was pushing and pulling and examining her incisions and Zoey just laid there, letting her do it all, without showing any signs of frustration. Before getting the surgery, Zoey had to be sedated in order to be examined because she would not let anyone go near her legs. But now here she is two weeks after a major surgery, with big incisions running down each leg, yet she just lay there and let the doctor poke at her. Nothing in the world could ever made me feel any prouder than I did this morning sitting in that veterinarians office. She asked us how we were coping with it all and she shook her head and said that it looks like we are taking it harder than Zoe is. And she said that many times this is what happens. The owners suffer more than the pets do. She told us that we had to take care of ourselves and she told us that we are doing a fantastic job. She said that the proof that you are doing a great job is lying right there at your feet. She said that despite the struggles that we still have with her eating and drinking, being up all night crying, the episodes of panting and anxiety during the day, etc. We are at a place that is perfect for two weeks post op. So we left with an increase in pain medication, and 20 day supply of a probiotic to help her with some stomach issues, and another appointment to go back to get X-rays (which requires sedation). So needless to say we are really pleased here tonight.
I have a protein deficiency. My levels can drop very quickly and unexpectedly. When they do, it sets off my CRPD (Complex Regional Pain Disorder). And sometimes I break out in a rash. The nerve endings beneath my skin throughout my body become so inflamed that, in simple terms, it burns my skin from the inside out. This rash on my neck is actually a burn caused by flaming nerve endings. This disorder is HELL. My body is like an inferno. It creates unbearable pain inside me that often is too much to cope with. Sometimes my extremities become swollen. Some days, like today, I have burning skin. Other days my body is so weak that I can’t function normally. I wake up at night in tears because the blankets covering me hurt so much.
But I know that one big trigger for me are drops in my protein levels. So I’m sitting here at the trailer drinking what I consider to be my ‘medicine’ as I patiently go with the flow of life with Complex Regional Pain Disorder.
I can’t remember a time when I didn’t have this voice in my head. At first it was just a whisper, sneaking in late at night when it was quiet. But the voice got louder and spoke to me more and more over the years. It makes me doubt my every action, it makes me agonize over every word I speak. It tells me I am stupid, it calls me a failure, it tells me I’m annoying and it tells me you hate me. Sometimes the voice is so loud and I feel so exhausted I can barely move. When I ask the voice what I should do, it tells me to hurt myself, it sees some busy traffic and it tells me to
run in front of it, it sees that knife and it tells me to hurt myself with it. The voice was so loud and so persistent, I saw no end, I believed everything it said. I became so sad, I eventually stopped feeling anything.
The voice became “helpful” then — it helped me make a plan. It tricked me into thinking the only way to make the voice disappear, was to also make myself disappear. However, that’s when the other voice would also speak. This other voice made me see the future, it made me see all the detail, it made me see all the pain. That voice would save me, but that voice also plagues me. Voice number two has a physical form, much harder to hide. It clouds my mind, it stops my brain from functioning, it makes me feel sick, it causes me feel physical pain. This second voice is no friend, it makes me scared of everything.
So welcome to my mind, where three voices battle. There is the depression, it floods my mind with painful thoughts and memories spontaneously. Then the anxiety, the voice of panic and overthinking. Then, somewhere in there is me, who just wants to be happy.
I know this sounds silly, but the hardest thing I do each day is just getting out of bed. I spend all night agonizing — sometimes it’s depression giving me a highlight reel of every painful memory, other times it is anxiety racing around my mind, listing everything I need to do. At some point I eventually sleep, sometimes even without nightmares, but when that alarm goes off I feel so exhausted. I can just about deal with that — coffee helps — but then anxiety and depression also wake up. I panic, I think of all the things I need to get done today, I imagine them all in my mind. I’m scared of not finishing, scared of failing, and then depression tells me I shouldn’t even try. So I lay there for a while — powerless, exhausted from the nightmares and panicking about the clock ticking, plagued with the fear of failure.
Eventually I force myself up and try to focus on just one little task. The voices quiet down and I gradually get on with my day. Some days I’m not so lucky. Some days the depression wins and I lay there for hours and hours, doing nothing but thinking about how pathetic I am. I tell myself I will fix it tomorrow, then the panic and the pressure increases and that night’s sleep is even worse, so the next day is even harder. That cycle just continues and the voices get stronger. But don’t fear, because I understand the voices are not me. I don’t know where they came from, but I know they’re not my words.
That is what makes me better now, why I seem happy. I try my best not to listen, and some days I am really strong. I push it down with dreams of the future, of a life where I might one day be happy. I know how to fix myself now, I know I will beat this. However, I need you to understand more than anything that everyday is still a battle for me. It may seem silly to you, but for me this is all so real and so difficult. So when you say I am lazy or weak or pathetic you cut deep into my wounds. You make me doubt everything I am trying to do, and you become just like those voices. As well as shouting at me, telling me to snap out of it, telling me the voices are my fault, you might as well be a part of my illness too. You may forget your words or your actions, but depression takes great satisfaction in storing it and playing it back to me.
I don’t expect you to fully understand, but can you please just accept this is happening to me? That alone will make me ten times stronger. That is all I need from you.
Today was one of the days where getting out of bed is a task that seems damn near impossible. David was working an early day shift, scheduled to get home by 3pm. So I knew I needed to be up, dressed, and somewhat alert by then. Until 11ish I dozed of and on, not even so much as the desire to change my body’s position in the bed. It felt as if there was a dead weight pinning me to the bed. I needed to use the bathroom, my bladder full from lying there for almost 12 hours, but it took close to another hour for me to have a conversation with myself in my head about whether or not I could hold it – just a little bit longer.
Noon came. I watched it change to 12:00 on the clock and all it brought was a deeper, stronger sense of dread. But I dragged myself to the bathroom. All I saw in the mirror was a mess. What did I do? Go right back to bed.
1:00pm came. I hate days like this. Many thoughts run through my mind when I lie in bed in this state, all of which are negative. Every minute in that bed was another minute of my life, wasted. Another minute of today where I did nothing useful with my life.
2:00pm. I watched it come up on the clock. Realizing that in one hour David would be home, I started to panic. I’m talking full blown panic attack. I made up the bed while both hyperventilating and sobbing. But in that hour I accomplished a lot and when he got home I was freshly showered, dressed, make up on and meds taken. The only thing that showed I had a rough start was that it was 3pm and my hair was dripping wet, so it was obvious I had only just showered.
He walks in, coffee in hand. Score!! Gives me a kiss. Score again! Then wraps his arms around me in the best hug ever, then makes direct eye contact and tells me he loves me. Took every ounce of strength I had to hold back tears because I felt so guilty about how I spent the day. How useless I felt knowing that he had been out working while I lay in bed. Next he reaches into his back pocket and says “I got you something else with your coffee.” And he hands me 2 tickets for the Mussel Bed Soiree that is featuring Johnny Reid. Then the tears let go and I just sobbed. I’ve never been to a concert before. AND I love Johnny Reid!!
“You know me, better than I know myself. You see me, different than anybody else. Just when I feel I’ve reached the moon, you look at me and say Let’s go higher. You say, baby, don’t look down, look at what we’ve found. Come on, we can go higher.”
A simple life. That’s all I want to live. I want to listen to the pouring rain and read books all day long. Books that I will never be tested on. I want to paint and write and color things – because I want to. Not because I have something to prove. I want to drift off to sleep with moonlight shining in my window, naturally. Without medication that slows down everything, all thoughts, activity. I want to wake up slowly, with the sun shining over my legs, warming my bed. No alarms. No calendars. I want to feel everything as it happens. Naturally. The way I was born to. I want to never be governed by money or expectations or rules and laws. No clocks. No restraints that all of humanity imposes upon us. I just want to be boundless and free and
Wash off makeup
Get David to put my hair in ponytail (I obviously can’t do it with one hand)
Cuddle with Toby and feed him some carrots
Sign off facebook
Check for appointments the next day then set alarm accordingly
Put water in my CPAP machine
Turn tv on a decent channel
Turn on fan, no matter how hot or cold it may be
Crawl in next to David, lie on his chest, talk about stuff, sometimes we don’t talk but rather we play a little
Turn on my side, put on oxygen mask, David cuddles into my back, arm around me, scratches my belly ……
The past few days have been nasty. Yesterday I spent 19 out of the 24 hours in bed. Not necessarily sleeping, but just lying there. I’ve been very unstable. Yesterday I actually began having fleeting thoughts, very disturbing and scary ones. And it’s hard because my husband gets very on edge when he senses these symptoms.
I work hard at hiding my illness because I know how scared everyone around me gets. I know it’s not the right thing to do but I hate the feeling of people breathing down my neck, wondering what my next move will be. Hospitalization often is used as what I feel a threat. I say I’m not well and the next response is “do you need to go to the hospital?” NO!!! Not every episode requires me to be admitted. I do respect their fears though. I don’t have a good track record when it comes to coping well with my illness.
Now today. A complete switch. I woke bursting with energy. I had David drove nuts by the time he left for work because unlike the past few days, all I wanted to do was talk. I cooked chicken and brown rice for dinner. I have stripped and dusted every accessible surface in our 2 bedroom apartment. I’ve put fresh tea lights in all the candle holders. Sorted through and got rid of a bunch of stuff. Experimented with my hair using different clips. Up. Down. Sideways. Attempted to read but I spent 30 minutes on 2 pages. Every little sound and thought pulled me away. And sweat!!! There’s a blizzard outside and I have 2 windows open and a fan on. It’s like my blood pressure is through the roof. I don’t know.
This is ridiculous.