Hi All,
I am curious about how others balance working (in and out of the home) with their IC and this treatment.
When I first got sick in August of 2009, I was working a demanding job in NYC and trying to work while sick was a nightmare. After a year, I moved to Maine, where my family is. They have been unbelievably supportive and kind to me during this time and I feel very lucky in that respect.
I've worked little odd jobs here and there for the last year, but nothing that is consistent OR really sustainable. I'm pretty much living on my savings and my mom is helping me a bit.
I'm starting to feel like a functioning person again now, and am thinking I should go get a job! However, I notice my symptoms get really intense when I am tired and I don't want to hinder my progress for a low-paying, silly job (all that's available in rural maine). At the same time, I feel like I should try not to drain my life savings if I don't have to.
I'd just love feedback on how everyone manages the work/health balance and how much info you tell your employers about what's happening for you.
Thanks,
Claire
Hey Claire! This is an awesome topic. Before I got IC, I was a marketing manager at a pretty decent company. I had worked really hard to get a position like that. I loved my job, but it was VERY stressful. When we moved to Texas, I decided to take a break simply because I wanted to recoop from the stress. So I started volunteering a lot of my time using my marketing, advertising, PR skills. A few months later, I got IC. I had to take a break for a few months because I was in so much pain and walking to my home office to check my email was a feat. Since my pain has decreased (not gone, but a lot less), I've started doing A LOT of volunteering again (about 40-60 hours per week, sometimes more depending on needs). I just feel like I need to keep my mind on something other than IC so I don't drive myself crazy thinking about if I'm making progress or not. I can mostly work from my home, but I do go to several meetings a week. I know you probably want to work for money, but I find that volunteering at my own pace keeps my resume current until I am well enough to handle the stresses of having to go to a job every day. I do it because I love it. Another thing I've considered is selling handmade items. I'm a pretty crafty person, and my friends often ask me to make things for them or to help them learn how to make things. Since I'm home most of the time, I have more time to work on things like that. I've considered selling some of it to make a few extra bucks. Perhaps there's something like that that you could do? I don't know how some of these ladies go to a job every day. That is definitely something to be admired! But if you're not able to yet, there could be other "entrepreneur" options for you too.
At the beginning, it was really hard to work especially not knowing what is wrong with you and just burning up/flaring. I was transitioning from a major corporate company to a smaller company (2 miles from home thankfully) in the hopes that they would be more understanding of my illness. I had to be upfront with my boss/co-workers since my current company is very small (everybody knows everything about each other). That being said, when I suffered in pain, I couldn’t hold it in. I know it has impacted my work and my career goals currently, my mentality… I see others doubting my ability, especially since I was brought in at a Sr. level. However, I have no choice other than to work, taking it 1 day, sometimes 1 hour at a time. Sitting for long periods of time is REALLY hard. Stressful deadlines just throws me completely off and I feel like I have to start back at square one. I am happy that I was able to find Dr. B so quickly after the onset of this illness (it started in January ’11) and I found her early September and met her in October 7.
Some days are tough, I just want to give up and not work but it’s not an option, financially, for my family. I just had my period and had a minor anxiety due to extremely heavy bleeding (this is why I was placed on BC due to excessive bleeding/blood clot passing, worst decision ever made to listen to Western Docs). This morning, my period waned and just as I thought, the itchiness has started back super slowly and now its back! UGH… it’s a 1-2 level but my concentration level is what’s killing me right now. I just pray it stays level 1-2. However, what keeps me going is that I keep hearing this will get better with time. My personal goal is to feel at least 75% better by my birthday in May. I know that I shouldn’t do this to myself but its something to look forward to as long as I follow her diet strictly which I have been (my only vice are potato chips). I would love to work for my own. I started a photography business when I got laid off 2 years go but fear of continuing and not making $ in this economy keeps me from following my personal dream. One day… I hope.
Anyhow, when I met Dr. B, she told me I was a mild case (I should be better in a year, personally, I give myself 1.5 years in my mind just so I don’t get my hopes up). It doesn’t feel anything but “mild” to me BUT I knew this going into this journey that it will be tough. I’m at week 9, knowing that I can color my hair with Dr B’s approval, there is that shimmer or hope/yet some fear of what if I flare up after I get it colored (I have major psioriassis on the back of my head which I feel like if I keep itching it, the coloring will seep in). I need to somehow stop itching my head, lol, easier said than done!
Two steps forward, 1 step back… I can’t live in fear, I need to get better.
I used to tell my professors, that I had IC and thats why I was the ONLY ONE leaving our 1.5 hour class, but now I don't really care. I told my bosses at my old job, but it just got super awkward. Now, I just tell everyone I have allergies. Heh.
Why not start part time and see how it goes?
Hey Tinkerbel,
That's so funny what you said about the crafty stuff- I have an MFA in painting and have had TOTAL artist block for about a year but have been making lots of handmade goods and selling them at these great indie craft fairs. I am working on getting my website up and running again with crafts on it as well as art. Maybe it's all meant to be.
I like your perspective on volunteering- it does take the pressure off and allow you to be engaged while not having the same level of responsibility. Seems like a wise compromise while you're "working from home". It's definitely something to consider. Thanks!