"She's doing the disabled thing again"

I've been working a lot lot, even when I probably shouldn't be. I say yes a lot even when I know it might knock me flat. I like to at least try.

The last few weeks at work (job #1) I've been covering for someone that has left even though I know I can't keep doing it, as well as working job #2. I've also been to a few outrageous parties (whole other story) when I probably should have stayed in bed. The only problem is that missing out on life isn't worth it so I try to mitigate the suffering that will follow. My days have been like this, work-work-work-work-rest/suffer-work-party-suffer-rest-work-work-work-work-work-suffer-party-suffer-suffer -work etc. I'm not complaining, this is the best things have been for years.

Yesterday one of my best friend's flew the coop. She has run off to Tokyo for a couple of years and we had a send off party for her. It's also my birthday this week. I've been slooowing down as the days go by.

So just now I went to wash my socks for work tomorrow. I found myself staring into a washing machine full of unclean towels. Then I looked into the dryer and there is a load of clean and dried boys things. I couldn't find the energy to switch them so I called both of my sons. They usually ignore me these days, now that my needs aren't so acute. They used to help me around when I was ill.

There must have been some sort of tone in my voice that they remembered because they both came running. They found me on the floor of the laundry room where I had sunk from exhaustion. Now that I'm working, the laundry has piled up to epic proportions. I just don't have the energy for it but I need clean socks for tomorrow so I don't repel my coworkers.

As I lay there concealed in mountains of bluejeans and T-shirts mumbling that I need clean socks, I heard my youngest say, "She's doing the disabled thing again."

They snickered at me, rolled me out into the hallway and switched the laundry.

Work Update

Things are moving so quickly. I have been getting habituated at work. It's been hard and hard on my body but I love it. I love being needed again. I love that I fit in.

I figured out the source of my extreme anxiety and stress. There had been an accident with a tiny neighbor child weeks ago and I was the first one one the scene. I was quick, calm and efficient but I did not know if the child was alive. I had just gotten ready for work and was boiling some water for tea when it happend and I heard the screams from the mother.

I ran out side with my phone and called 911. I attended the scene and helped as much as I could. Then when the paramedics came I went to work. It all spiralled down for me from there. Miracle upon miracles, the baby is okay. I have seen her smiling little face since and cannot believe she was alright. She had fallen on a spike that went 3cm into her little head right next to her eye. It somehow just punctured her nasal cavity and when she gets a little older there may hardly be a scar.

As for me my memory tanked and I couldn't concentrate at work enough to remember anything. I began making mistakes and feeling like I was going to be fired. Anxiety took me right over and I didn't want my kids to be out. My heart has been quickly pounding over next to nothing. It's unbearable at times.

Well, I was diagnosed with Post Traumatic Stress Disorder. The recent accident wasn't the cause it was just the trigger. The original trauma came when I was a girl. When I realized what was happening to me I felt a little better but it still continues. I'm hoping there's something that can be done.

As for work I'm glad to know it wasn't the reason I've been faltering so badly.

I do know that I need to build confidence at work and probably in life in general. Being unable to work for 5 years really affects your psyche. I often find myself second guessing my own judgment. I ask a lot of questions but now I realize I need to work things out for myself and know that I can come to the answer on my own. It's so weird. I feel like I'm reliving a part of my less secure life. I had times when I was young and made mistakes but grew into an intelligent woman who knows how to take care of things.

Feeling insecure is not something that I want to continue. As a person I am very confident and I know soon I will feel that in regards to work too.

"Just a bump in the road" is what a friend would say. My cancer would be just a bump in the road. Some bump.

Adjusting

Thank you to everyone who has been giving me tips on where to find info and support on working again.

I've been having a lot of anxiety lately. I'm hoping it's just a phase that I will work through. I have had a good talk with a friend of mine and just being able to talk about it has improved things. Sometimes all it takes is the presence of someone you feel close to.

This experience has also made me realize it would be nice to have someone in my life. That thought pops up now and again. I'm not really sure how to reenter the world of dating but I know that I'd like to at least try. I'm sure there is someone who is a little like me, being busy with life wondering when I will show up in their world. That's what I like to think anyway.

Who Do I Call?

I'm sitting here wondering who to call. I want to tell someone what a hard time I'm having adjusting to work. There's no one to tell, I guess. At times like this I feel like I'm the one in slow motion in a scene where people in the background speed by. People have lives, they do things when they get off of work and on the weekends. They get together, go camping, have drinks and do other things I'm not a part of. When I am able to make it I'm only half there.

Where I used to live with occasional nausea, hip pain from my bursitis, joint stiffness/pain and getting through my day, I'm now trying to manage all that while getting a lot of things done at work. I'm putting everything into being precise, effective and as productive as possible while having the uncomfortable feeling of failing at all. I ignore my pain. I wish to do better and put all my effort into doing so. Then I find I've forgotten something and stress wells up inside of me. It's okay but as each and every little minor mistake builds onto my psyche I wear it as a backpack. It gets heavier and heavier as the days goes by.

Friends have said, "Oh that's normal", or "Now you know what it's like for everyone else", when I talk about my failings. My memory was very much above average before, not so much now. The frustration I feel over it is completely overwhelming.

I try and tell myself it's okay, that not being perfect is okay. I've never believed that of myself. I have no problem accepting others as humanly flawed but cannot even conceive of it being me. I don't think I'm perfect, I just actively do everything within my power to minimize the imperfectness ( <---like in that sentence structure). I often make up the gap of normalcy and excellence with sheer will power and stubbornly refusing to stop until I've done %110. Always %110. That was always my mantra through simultaneously single parenting, working and completing my degree.

I thought I had learned something since almost biting the big one. I thought I had become easier on myself and learned how to be gentle. How can I still feel that way? I never used to dispair about it, I just worked harder. Maybe I should be in some sort of 12 step program for perfectionists anonymous. I'd probably try to be the best recovering perfectionist there, I'd actually kick everyone's asses in anti perfectionism. I don't know where this high achieving streak comes from....

Or maybe I do. I didn't have the kindest of childhoods. And I remember in elementary school, the boys chasing me with worms by shoving the worm directly in my face screaming that I was scared because I was a girl. I taught them a lesson by tackling them, taking the worm from them and then chasing THEM around with it. They screamed their sissy little heads off. They never did that to me again. I always had to climb higher, run faster and be tougher. So much for being non competitive. The problem with being competitive with yourself is that you're always the loser.

I just want to do well at work work and be valuable again. I feel like every little mistake or being a little bit slower than I would have been before, is me failing. Failing to be of any good to anyone.

I really used to struggle hard with this. Am I no different than I was before pre cancer?

Work

I know I've disappeared from the blog front. I wish I could say I was out having great summer adventures and I am in a way. It's been taking everything I have to work at my new jobs. Jobs plural. I never ever do things halfway, I'm in a %125 or I'm out.

I'm so ecstatically, over the top happy to be employable again, you have no idea. Five years off for a naturally ambitious person like me is a slow painful experience. I felt irrelevant, unneeded, incapable and useless. I spent each and every day pinning about the day I would be well enough again for life. Five years is a hell of a long time to be trapped inside your own house with your personal demons (and I don't mean my sons).

I found that it was like a slow motion life-passing-in-front-of-your-eyes kind of gig. Every moment of my life, often painful ones, bubbled up to the surface. Truthfully they were things I had blocked from my mind with work. Keeping busy was like a drug to me before and this post existence is like being strapped to a chair forced to watch movies of my life, highlighting the mistakes, the losses and all that. Painful. I've made mistakes. It's hard to know what the worst ones may have been.

I've also done some things damn well.

I always seem to be going farther than my own capacity. Therefore one job turns into two. After the hellish first couple of months where I was in complete pain until I scraped myself out of bed to go back the next day, I've continued to go too far. I'm only working 3 shortish days a week and I have shifts of my other job tucked here and there. I decided to forego my summer for this grand experience and I'm mostly happy with it, except for the fact that I haven't gotten to enjoy any summer!

That and I felt so confident like I was getting my feet again, that I booked the first two weeks of August working. I worked almost every day. Near the end of the two weeks I felt myself melting and my functioning took a nosedive. It was even noticed by my boss which felt like a real kick in the gut. I go to work and while I'm there I swing between, "I can do this! I can do this!", to, "Oh my god, they are going to fire me" I seem to even manage to tell myself they are going to fire me when I'm doing good job.

I have such high standards for myself that I do things well, but I drive myself to the brink of insanity. I guess I'm never quite good enough for myself. Anyway, I just got carried off on a tangent. I'm tired. I worked myself to the point on non functioning (did I say that already?) and it's been hard. Too tired to eat, too tired to drink, I crave goodies when I'm laid out like this. I have completely crashed. My house of cards has come down.

What did I expect?

I had my three days off hoping to recuperate and I went back to work in the same state. I managed to get through another week and am trying my best to recoup before going back again. I am on my third consecutive pajamas day. I even had a shower yesterday just to put them right back on again. If my other job calls I will have to say no, I'm kind of scared.

I need to get back to it and keep going, not just lay on the floor and become useless again. I've been too tired to even sit at my computer and respond to emails. The lousy thing is I didn't even make it a financially worthwhile compared to pacing myself through the month. I'm nowhere. Well, I'm not nowhere, I'm employed.

I love being employed. I know my limits now and won't push them again.




Well heck, who am I kidding.

Walking Amongst the Working

I'd say by now I'm semi-completely, officially one of the working. It's so real and happening that I feel like I'm waiting for the other shoe to drop. I'm really happy about working, more happy than I can even type out here. I had started to feel like moving on was a dream slipping away from me, day by day.

What I'm excruciatingly happy for right this second is that I'm not in excruciating pain. Usually I come home from working my short day at the job (Awesome!) and can hardly walk because the bottom of my feet and hip hurt so much it feels like someone beat them with a cane all day. No exaggeration. I wonder how so much pain can be inflicted by such a benign situation. It's not like I have cords of wood strapped to my back walking 40 miles up hill in bare feet all day but my body doesn't know the difference.

I get home and crawl up the stairs to my room where I turn on my Netflix. I don't move until the next day when I go and do it again except maybe to put on a load of laundry.

That's when to my delight, I discovered the intercom button on my phone. I now call my sons every few minutes to ask for something whether I need it or not. They bring me dinner, glasses of water, I sent one boy to fetch me a brownie and when he came back empty handed because they were out, I sent him up the street for a chocolate bar. I give them instructions on chores to do in the house. Why didn't I know about that button before?

Occasionally I like to throw in a compliment just to keep them on their toes. *Ring ring* "This dinner is really good, thanks.", "Uhhh, your welcome" *CLICK*

Sometimes I ring just to rub it in their faces that I have 2 jobs. Whenever they give me lip as I lay in my bed after the fifteenth intercom call, I say, "Oh yeah, try having 2 jobs you little loafer. Your leukemia cancer survivor, bone marrow transplanted, graft/vs/host riddled, vagina surgeried, medicated up the hoohaa mom is kicking your A.S.S in the J.O.B department. The satisfaction that gives me has just keeps on giving. I could do it all day but after a while they claim 'they didn't hear it ring'.

So today I'm not in excruciating pain. Half that. SOoooo, that would be awful pain if it's half of excruciating? I hope to arrive at regular pain in no time and maybe dare to dream of a mildly painful workday. If only. I'm so glad I have a high pain tolerance. It's been a life saver. That and the intercom button.

New Job

I applied for a new job and got it! It feels like everything has changed on a dime but for the better for once. I felt like my soul was rotting away here in my home. I wanted to be out doing things but I had nowhere to go. The first job that I went back to (after 5 years) has been really slow because it's the summer. My stamina is still low but improving and I think my excitement about where I'm going is helping tremendously.

The last few years an idea had developed about the atmosphere I'd like to be in. It actually feels somewhat essential rather than a choice. I need to be in a creative environment working with other creative people. A place where my skills are used and appreciated. Somewhere, where I feel charged up to get home and do some creative work like painting. I thought that would mean me creating that for myself and being self employed.

I tried to rent an itsy bitsy studio space a few months ago but it disappeared as soon as I applied for it. It felt like another small loss in a grand series of losses. I started feeling like there may never be a better space for me, or any place on this Earth. I feel disjointed and like I don't belong. I live in a beautiful neighborhood in the most desirable place in a very desirable city. Gratefully I live in social housing now which has kept us from being homeless but we don't fit in here.

The neighbors don't speak to us and everyone keeps to themselves where I'm used to knowing the people around me. The energy here is bad. I realized why people here won't talk to each other when I had the SWAT team surround my house because the person two doors over was selling drugs and had the neighbor on the other side of me subtly terrorizing me because my son put a millimeter ding on his car door. Our spaces are squeezed together and I have plenty of dings on my car door from the other neighbors and I paid him to have it repaired but this guy went ballistic and threatening. I had to request to move my parking space and avoid him until the day he was hauled away by the police for battering his family. Not so nice.

I'm sure most of the people here are probably nice but we pass by with no eye contact after me trying for 2 years to say, 'Hi' to them. It feels like an alternate universe living here. Beautiful yet as a small complex we are unwelcome.

This loss of feeling in control has hit me hard.

So applying for my first job helped me feel a bit better. Applying for and getting the second has made me feel useful again.

I work part time for a small local clothing design company that is far better than I could have imagined. Where I felt listless, I now feel energised. I'm scared of not physically being able to keep up but so far so good. I'm happy and I honestly can't say when I last felt that. I suspect it was two years ago before I moved here. I need to get out of this place. Getting out of this mountain of debt is going to be one hell of a struggle but at least I will be able to try.

I need to instill a feeling of confidence in me somewhere. I'm so happy to say it has started.

Trying

The last 2 months I've been exercising again. Every time I've been able to get a bit stronger since my transplant, I have a huge setback by getting sick. It got to the point that I was afraid to try. I actually have an instinct to stop whatever I'm doing to keep my heart rate down. That's because I've always exceeded my capabilities and ended up bed ridden from exhaustion. There is nothing I hate more than being kept down waiting for my body to recover.

I wanted to mention that the reason I have such a hard time recovering is because I'm one of those lucky folk that ended up with chronic graft/vs/host disease from my transplant. As hard as it can be at times, it's not as hard as I had imagined it would be. When I read my binder that the hospital gave me on bone marrow transplants it gave me the percentages of those who would die from the procedure. Then it talked about the percentage of people who may get acute graft/vs/host. Then it talked about the percentage of people it would be fatal for. Then it talked about the percentage of people who would get chronic graft/vs/host and the percentage it would be fatal for. It was like reading a horror novel even with the perky little clip art. I was convinced that I would not be one of the %25 that would suffer with the chronic kind. I was happy (if you can call it that) when I had the acute GVHD but then it continued on.

Comparing it to the fear of what I thought it would be like, it's not that bad. It's fearing fear itself, I guess you could say. The good part of the GVHD is that it helps ensure longevity. Also, exercise in transplant patients is shown to increase our life spans.

So for my mood, that's a tougher one. In the past I dealt with my anxieties my working 24/7 and exercising. Post cancer, that's been impossible. Every day now that I get out and do something like hiking up the mountain or up hills in my neighborhood, I feel a strong sense of accomplishment. When I get home I feel like I'm being swallowed up by my circumstances.

In my pre cancer life I had to deal with harsh realities and I have experienced depression before. I did everything I could with my doctor until she told me there was nothing more she could do for me. Then I started counseling, not believing in it but determined to find a way to ease my chronic anxiety. The counseling was very helpful. I also started working even harder to change my circumstances. The more I was actively trying to fix it, the more in control I felt, the stronger I felt, the happier I felt.

I know medications for depression help people but they don't help me. I help me. The more I do to change what I've been dealt, the more in control I feel and the better I feel.

All through my transplant I reacted oddly to my medications, I turned into a big pain in the butt for my oncologists. I guess my chemistry is just different.

So I've been exercising for 2 months and am feeling stronger. I finally was able to go back to my old job but there are hardly any hours due to it being summer. I knew I need creativity in my life but I have been finding it so hard to be self motivated right now. I feel like I'm piled with impossible things.

So I applied for another job. It's in a creative studio atmosphere with other creative people. Somehow I managed to get the job even when there was a pile of applicants. So far I ride my bike downtown and get to work in a bright beautiful happy place. It's everything I wanted for my life but I'm working for someone else rather than doing it on my own. I hope I've found a way to fill those needs even if it's in a slightly different format. I'm flat out exhausted and in pain when I get home but I feel accomplished. I hope this new schedule helps me correct the imbalances that I live with right now.

When I got there on the first day I found out they had seen my website and knew that I had had cancer. I hadn't brought it up in the interview, not that I didn't intend to but it never came up. I felt it would have been like whacking someone on the head to bring it up out of the blue. Even though I ended up chatting with my employer about what I'd been through, there in that environment the cancer seemed small. It seemed like a small side piece of my life rather that the suffocating omnipresent monster blocking out the light. And that's what I'm looking for. Rather than seeing the ruined city, I want to see the sunset over the fields.

Lady in Waiting

Where is my life? Fuck. I am getting so fed up with patiently waiting to get better. I waited for a year trying to find out what was wrong with me, I waited through all my chemotherapy for the day it would be over, patiently sitting in a chair for 6 hours a day attached to a pole getting chemo, blood and liquids. I waited 6 weeks to find out whether my brother was a match for my stem cell transplant. I anxiously waited 9 weeks in total for my hospital incarceration to be over and then waited for 100 days as an outpatient so I could go home again. I waited for my medications to be taken off, especially my steroids because they made my life hell. Finally I began to see an improvement.

Then I was put back on the steroids as the graft/vs/host began to wrack my body and my liver. I waited in great pain for my graft/vs/host scarred vagina to have surgery and then waited to heal. I waited for the chemo brain to clear. I waited another year to be taken off the steroids again and waited another year for the negative effects to wear off. Now I wait for the new medications to work so I can sleep normally and be able to work again, to get back to my life.

I think the hold button is stuck.

I worked so hard all summer and months before to build my strength so I could start putting the pieces of my life back together. I thought for sure I could be ready to get back to work by the end of the summer. No such luck. My GP gently said, "No". She wisely stated that I would crash and be set completely back, I have to get my sleep deprivation under control first.

I was heartbroken.

I have worked so hard to get there. Where? Anywhere. This is not me. Waiting and hoping and hoping and waiting. I am a person of action. I fix things. I tackle mountains. This is bullshit.

My Dr. was right, I would crash, I'm not capable yet. I guess I'm glad that she stopped me because I would be crushed if I tried to get back to work, failed, ended up in much worse shape and wrecked my employers confidence in me.

A lot of what my GP has been doing with me is improving my quality of life while I cope with the physical hurdles. Now Why does writing that make me want to cry?

Maybe it's just that kind of day?

So again... I wait.