What It's Like to Be Ill: Lost in My Own Life

Lately there have been several days where I've felt lost inside my own life, like I am wandering through it but the things I normally do are out of reach.  I am physically not able to do the things I want to do, but still feel irritated they're not getting done.  I feel out of touch with Justin because I don't have the energy to interact that much and often fall asleep putting the kids to bed.

So last I wrote about my diagnosis of IIH, I was three days out from my lumbar puncture.  It's been almost a month and I haven't blogged at all since then, mostly because I don't have the energy.  I started a medication called Diamox the day after the puncture, and it took me over 3 weeks to feel like I was even semi-acclimated to it - for the exhaustion to dissipate some, for me to feel I had a clear head, and even THINK about working out.  Which, by the way, is extremely frustrating when they are telling me that part of the treatment plan is to lose weight, but the other part is to give me medication that makes me so tired that it's hard to walk around my house or do laundry, let alone exercise.

I have been seeing my neuro-opthamologist every 7-10 days since then.  He has me do a visual field test every time and then looks at my optic nerves, and every time says they look 'slightly' better.  I have lost about 5 lbs since the day I got diagnosed, but pretty much all of that was before I started seeing him, so he hasn't really seen any loss.  I haven't gained, and I've been trying to follow my weight watchers points, but it has been hard with the exhaustion and having the other 3 people in my house all have birthdays within an 8 day period that included 2 birthday dinners, 2 parties, and mother's day.

Last week, I FINALLY started to feel a little more like myself again.  I was starting to be able to clean up the house in the morning and not feel like I needed to nap all afternoon.  I even went on my exercise machine one night.  Then, I went in to see the neuro-op again on Monday and he basically told me that he's not seeing much improvement and would have expected to at least see some more improvement by now.  He basically gave me two options - have another lumbar puncture to check pressure & drain fluid/reduce pressure and then up my meds after, or double the dose of my medication, then check back in two weeks and see if anything's changed, and most likely still have another lumbar puncture then.

Then he told me that he thinks the way things look now there is a 60-70% chance he'll recommend a shunt.  Don't feel bad if your reaction to following that link is staring at your monitor and saying "Holy shit, man."  Because basically after that appointment I wanted to curl up in a little ball and cry until I was all dried up.  I was not AT ALL at the point where I was able to think about surgical treatment options for this.  I'm still trying to get used to the idea that I have this serious diagnosis at all.

I realized talking to a friend after that appointment that I had been making a pretty big assumption.  I had ASSUMED that I was going to take this medicine, lose weight, and that this problem was just going to go away.  I didn't realize I was thinking it, but subconsciously, that's what I expected to happen.  So, being confronted with the idea that that might NOT be what happens was really scary and hard for me to deal with.

I have joined a few groups on Facebook and other forums I've found for IIH/PTC, and I went on and told the others that I was kind of freaking out.  I got reassurance, and also people told me that they also thought it was kind of early to be talking about a shunt since the medication hasn't even had 6-8 weeks to work yet, I mean, it's been a month.  Obviously the problem is that you want to give it time but you also want to prevent permanent vision damage from happening, and if my optic nerves stay as swollen as they are, permanent damage is a possibility.  But I decided not to freak out just yet if possible.  I've got another appointment in 2 weeks to see if there's been any change.

The worst part right now is that with the increase in dosage, I'm having to acclimate to the side effects of the medication again, and this time around?  It's WORSE.  I am still having debilitating exhaustion - falling asleep in the car when Justin's driving on the way home from appointments or work, not being able to go to work today because I can barely stay awake (and I hate calling in sick and take it kind of hard), having to have my kids repeat things 2 or 3 times before I hear them, not being able to fold the laundry or pick up the toys on the living room floor.  I arranged to go to Seattle with my Mom on Sunday and see my sister and have Mom drive home with me after book club so that I don't have to drive back alone at night because I'm afraid I'll be too exhausted.  And there is NOTHING I can do - more sleep?  Doesn't help.  If I don't get a double espresso of some sort on my way to work I can't function, and even then, I drag, and by the end of the day I just want to lie down.  Yesterday and today have been the worst, and I hope by Monday it'll start getting a tiny bit easier every day.  I'm also having symptoms I wasn't having before, mainly joint pain and stiffness.  My knees hurt every time I stand up, and my shoulders have been stiff and bothering me too.  I asked and these are side effects others have experienced with the medication.

Obviously, I'm back to this place where I'm supposed to be losing weight but it's all I can do just to go about my day without any extra activity, let alone exercise.  Some people suggested I get a second opinion, but I'm waiting on that.  There is only one neuro-opthamologist in Bellingham, so a second opinion would mean going to Seattle.  If the doc up here decides he wants to recommend a shunt, a second opinion will be built in to the process because I will have to go down either to UW or Swedish Medical Center and see a neuro-op down there, and they'd refer me to a neuro-surgeon they have a relationship with.  IF I decide to go that route.  There are two different types of shunt, but a shunt is permanent and they only have a 50-60% success rate.  For some patients, getting stents placed in certain veins in the back of the neck is a treatment option, but it depends on whether you have venous sinus narrowing.  Optic Nerve Sheath Fenestration is another surgical option, but it can be risky and a lot of times the opening will heal up and you're kind of back where you started.  This seems to sort of be one of those things where there are not a TON of good treatment options, and there seem to be no cures.  Remission is possible, but it seems hit or miss.

I do feel lucky, at least, in that once I adjusted to the medication, my main symptom seemed to be that I was more tired than normal.  Obviously not ideal, but there are a lot of people I have talked to with this illness who are basically debilitated - terrible pressure headaches, a lot of bad pain etc.  At least I'm doing okay with it in that sense.  Knock on wood.

I would really like to get back to blogging regularly because I feel like I REALLY need an outlet right now, and I'd like to continue my weekly updates on my weight loss and haven't written the boys their birthday letters yet.  I just need to find the energy.

Anyhow, the bottom line right now is I feel like I still don't know much.  I don't know what's going to happen.  I'm having a hard time.  It's hard on Justin because I'm not myself, not much fun, nor much help to him.  I can sort of see this tiny peak into the world of people with chronic illness, and I don't like it.  I'm really hoping that there will be a solution to all of this, but I just don't have any idea at this point what that looks like.