One of the frustrating things about having a chronic illness is that you often have to work on its time. You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal. Or maybe you plan for things to be bad, only to have a good day. Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home. Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.
I’ve been dealing with a lot of stuff healthwise lately. The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system. My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints. They’re now almost as puffy as they were when I first went to the rheumatologist.
It’s frustrating, because I’ve made commitments. I’m working on a research project that is intended to become an article written with a friend. It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap. It’s also on a subject I care a great deal about: privacy and the internet. You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily. I think it’s a good thing if it’s hard for the government to just jump in. If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do. And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.
Anyhow, I’m getting sidetracked. So I have this project that is important to me both career-wise and in principle. I have deadlines and people relying on me to do work, and frankly sometimes I can’t. Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible. When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.
When you work on chronic illness time, you have to have some give in your schedule. Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight. Maybe you work few enough hours that you can rest enough between them to keep going. All told, though, it’s hard. It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others. It makes you feel like an unreliable flake.
For me, that inability to know how well I can keep my commitments is the hardest part. It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself. It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me. And it is only a hint; the vast majority of me is deeply happy for him. And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in. Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy. (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp. I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely. Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)
Ye gods this is a wandering entry. I should know better than to write tired, which I am doing. My block had this godawful block party today that involved a DJ playing music at rock-concert volume. In the house with the air conditioner running and good earplugs in, I could still make out every word of every song. It has left me with a bit of a headache, I’ll admit. Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.
So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively. I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush. And why? Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic. Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!
So goodnight, everyone. Hopefully, tomorrow will be a more brainful day. Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.
Brilliant Mind Broken Body 
“You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal. Or maybe you plan for things to be bad, only to have a good day. Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.”
YES! That!
“When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.”
YES! Well, I can’t actually read books, usually, but even listening to them, I rewind a lot. But this is why I have the Harry Potter series pretty much memorized, having listened to them over and over and over and…. (Also Pride & Prejudice. Can never read that too many times. Or watch When Harry Met Sally.)
“It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others. ”
YES! When I was getting sick, I kept forgetting to go to meetings and saying inappropriate things, and it was terrible, and I had no idea why. I STILL feel pained and humiliated about that — and that was in 1995.
“but it rambles and forks like a bramblebush. And why? Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic. ”
YES! Well, I loved it because (shocker) I related. I had a good friend unsub from my blog because the entries were just too long and rambly for her to handle.
It is what it is. I always love reading your posts. So there, chronic illness!
You’ve got to finish law school. Being a doctoral student myself I think I can understand. You don’t ever start a program like that unless at sometime in the past it was incredibly important to you. Even if you don’t ever get the “perfect job” because of it, its a accomplishment that can never be taken away from you.
Its hard and some days really suck, but I say keep it up!
Like Sharon, I can relate to so much of this. I want to go to vet school to be a veterinary behaviorist (if they can modify my curriculum) but who wants to hire a behaviorist who has a 50% chance of being able to get out of bed some days? That’s if I could even finish.
For the record, I don’t think this was rambling or hard to follow. In fact, I followed it quite well–perhaps because my mind works in a very similar way
All I can say is I hope you finish, I hope you get your paper published…you deserve it. Just because we can’t fly down this society’s super highway at 150 mile an hour doesn’t mean we don’t have alot to offer this world. We Do! I just wish our society as a whole didn’t put so much importance on the “must be done this very second” philosophy. It saddens me when I see how much additional struggles our society puts us through because of our value systems. Hopefully with some r & r you can continue on. And did you ask your doc about probiotics to help you with your problems. May be the med is killing off all the good stuff in your colon. Just a thought.
I did talk to my GI doc about the medication when I was first put on it; it’s an NSAID, and unfortunately the primary way they hit your GI system is irritation and ulcers. I probably can’t tolerate this drug long-term, but it’ll have to hold until I can see my rheumatologist. That’s why my pain specialist suggested a 1-week-a-month ‘break’ – to let my GI system recover and heal from the irritation.
While you’re taking the NSAID, Kali, it’s still worthwhile to take a probiotic or even eat a daily cup of yogurt to replenish the good bugs in your gut. Doing so won’t fix the GI problems, but it might blunt the ugly edge a bit.
You’re learning well how to live on chronic pain time, Kali. It’s frustrating to move toward your goals slower than other people do, but take comfort in the fact that you WILL reach them. In the meantime, take the best care of yourself as you can. You’re worth it.
Sending calm, comfort and patience your way. Hug Mr. Hudson and the boyfriend. And walk in peace.
Well, it’ll have to be a probiotic. I’m somewhat intolerant to something in milk (not lactose), so having a cup of yogurt every day is a recipe for a lot of discomfort. I’m seeing my GI tomorrow for a procedure, so I’ll get her opinion on it. I suspect if I’m going to be taking a probiotic, she has particular ones she’d recommend over others.
” “When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.”
My goodness, that comment rings true. My returning to the same set of novels over and over again has become something of a joke to those close to me. I never thought to connect it to health issues. How interesting
It’s hard to register for needed classes when the ones you need are all 8am -11am, and your EDS/POTS body will NOT allow you to wake up before 10/11 and stay functional. -_- A whole lot of this is hard. I relate to so much of what you wrote. So frustrating, and I have no idea what to do about it!!!
Well, you have two options, one of which is much easier than the other, but both of which will require a doctor supporting you. I’m writing this based on my experience in the US; if you’re outside of the US, I don’t know exactly what the laws with regard to disability and schooling look like.
To start, for either, you need a doctor’s note that says that you are not able to attend classes before X time due to your disability. (whatever time it is that you are able to actually get to the school) What comes next depends a bit on how your school is set up. Mine allows me to register for more evening classes than is normally allowed; if the classes you need are taught in the evening, that may be an option. The other possibility is that they’ll have to change the times on classes to when you can be there. Now, mind you, they can limit it to classes that are necessary to graduate, which means you may not be able to take everything you would like. However, it should allow you to actually finish your degree, which is something.
To brilliantmindbrokenbody my heart goes out to you. I am not disabled, but I just did a paper (I am in law school, also) on an international issue for my class: HM v. Sweden. HM is plagued with EDS and has taken Sweden before the Committee for the Rights of Persons with Disabilities because Sweden refused to give her a permit to accommodate a hydrotherapy pool in her home, the only means of relief for her situation. A friend found this blog and sent me the link. I thought it was interesting that you are in law school and have EDS and that I just wrote a 25 page paper about a woman who seeks relief from her government authorities, but for no apparent harmful reason, was denied her request. If you are interested in more communication about it, please respond to this blog or look me up on facebook. My prayers are with you.
Helen DivineDestiny Richmond (fb name)
It takes me 45 minutes to get up and take my meds and be ready for my GI track to go forward and crunch me like an old woman. I am 32 years old and have hands of a 50 year old. I circular think and type. To hold my attention to anything is a hard thing. I work from home now making things for pirate festivals and renaissance fairs. I make it out to the events to work the booth only by the skin of my teeth and I have to fight to get dress, brush my hair (and my hair even feels like it is hurting), gather my belonging, not forget my hotel key (AGAIN), grab my emergency meds, and run out the door. If I have a sore I have to protect it like a new born baby in the sun. My system wont heal if I get to much sun. My children are young, 5 and 8. I have to wake up with them half the week. The only reason I can even raise my kids without horrible problems is because I have dual shared responsibility as it is called in Florida. I have them half the time exactly which gives me a MAJOR break. My mother is almost bed ridden and I watch her fall apart more and more each day. I have learned how to manage my pain with small amounts of excersize and forcing myself to stand up every day and push myself farther and farther. I am stronger than most EDS patents because of this but it is not for everyone. I look frail, I am really tall, and I am dealing with the bone deformities of the spine, elbows, feet, and legs. I cannot gain weight, I cannot sleep, I cannot even cry about it anymore.
The long and the short of it is that I understand. And to have someone understand and not be alone sometimes helps me through the day that somewhere out there another person knows my journey through life is not normal but still has value. Don’t give up on law school. You will find a way to use your education even if you work from home and become a consultant while in bed with your tea and a laptop. I have fought for everything I have and tried so many paths. I have faith in you due to the way you type. I know it sounds funny. But you type the same way I do, or at least when I am in pain that bad. I will be soon. Waiting for my meds to be filled now. “sigh” today is going to be a long, long, long day.
You hit the nail on the head!! You do have to work on its time, and it is SO frustrating. I live a life drowning in guilt because of the deadlines I can’t always meet or the commitments I can’t always keep. And the brain fog? I can barely even do simple math when I have flare-ups. It’s so devastating. I feel like an unreliable flake, or an idiot, but I know I’m not.
But how do you prove that to others when you look fine, and when you are able to work, you work magnificently?
I’m planning on going to law school, so when I found out you’re a law student I got excited! I’ve debated whether or not to go, but you know what I figure? I figure, it’ll hurt a LOT, but it’s something I deserve to do. I couldn’t live with myself if I let the way other people respond to my illness (and that’s the worst part, really) stop me from getting what I deserve.
If you’re an intelligent high achiever it’s a curse; you will always somehow live with the guilt of looking unreliable, the guilt of feeling like a maybe you’re just a big baby, the guilt of feeling helpless as to when you can get things done. Stress makes my EDS symptoms worse, and of course, the guilt compounds onto the stress.
I had a student services advisor at my college “suggest” that maybe I can’t “handle the courseload” and I was SO offended. I can handle the courseload. I have a 4.0 GPA. What I *can’t* handle is people pretending like there’s nothing wrong with me, and that I shouldn’t have what they consider to be the “privilege” of being able to hand things in late sometimes, or staying home from class when I’m sick.
The worst part, for me, is how others respond to my illness, or how my illness makes me look to others. That’s the worst part. I’m with you, lady. It’s so nice to know that I’m not alone with those feelings. Thank you.
I’ve actually just graduated – my diploma date was at the end of last month, so I am officially Kali, J.D.
As far as law school, plan on it being a heavier, harder course load with more reading and more need for excellent recall than undergrad took. If you’re trying to decide what law school to go to, I’d be happy to talk to you about mine – they have been extremely accommodating and helpful with all of my disability issues, including the fact that my needs have increased several times during my time in law school. Most of my professors were willing to work with me, too, above and beyond what the school required.
It’s so frustrating the way our abilities wax and wane so wildly. I made it a point to speak out often when I was feeling well so I would be less likely to be called on when I wasn’t – I wasn’t sure it’d work, because of the way the professors talked about calling on people, but it was very effective (and earned me several notations of ‘Distinguished Class Performance’, which I am told are extremely helpful for getting jobs, as they are handed out more rarely than A grades.
Worry about how my illness makes me look has kept me from jumping straight into the job market. I’ve developed an auto-immune disorder, and it just screws with me something fierce. We haven’t figured out precisely what it is (they call it ‘undifferentiated connective tissue disorder’, which basically means ‘it’s autoimmune but the symptoms and blood tests don’t narrow it down beyond that). My first set of medications didn’t work well, and the doctor doesn’t want to try anything else right now. I see him again in a few weeks, and hope I can convince him to try something new, because I’m very miserable indeed, especially with the wild winter weather we’ve been having.
I know this was three years ago, but I wanted to thank you because I could have written it today. It’s good to know I am not alone.
Also, I just saw your new post today about the important items you had that were accidentally trashed this week. Very sorry to hear that! I hope you are able to regain some of this collection.
All the best,
Candice