Driving

Image via WikipediaOne of the things we're excited about with the move to Mississippi is that I might be able to drive again. I quit driving about 3 years ago when my health had taken a pretty significant downturn. I was having major problems with balance and depth perception.  I felt foggy and sort of disconnected a lot of the time. I was having pretty significant involuntary movements that would probably be really bad to have while driving. I also was having major issues with sensory overload - lots of motion and noise tended to be really, really disorienting.  So, because I didn't feel safe and I didn't think it was a good idea to risk injuring or killing someone, I quit driving.

Now, I think I can safely experiment with driving short distances with someone else in the car to see how I do.  I still have days where I'm foggy and slightly out of it. Sensory overload is still a problem - it's one of the major reasons I now HATE malls and grocery stores during busy times.  And my migraines can create or enhance depth perception problems. Pain and fatigue are also a distraction.  Medication is also a major concern.  I can't take anything that might be impairing if I'm going to drive.

But, my depth perception has improved.  My balance has improved.  I don't have nearly as significant an issue with involuntary movements.  Traffic patterns in Mississippi will be far less intense.  There isn't quite so much noise and motion with traffic, bikers, pedestrians, trains, buses, and skyscrapers all at the same time.  It's easier to pull off most roads.  I won't have to parallel park. 

So, the strategy I'm developing is to drive slowly (and stay in the slow lane while doing so) and try to give myself a little more reaction time.  Avoid driving in bad weather.  Try to drive only during quiet times.  Make sure I know where I'm going. Make sure I have pain meds that aren't impairing with me.  Keep a snack of some kind  and water with me as both low blood sugar and dehydration can be major contributors to migraines and CFS symptoms.  Make sure I always have my phone with me in case I get somewhere but don't feel well enough to drive back home.  Don't force myself to drive if I feel like I shouldn't. 

I have also discovered recently that lying flat on my back on a bench or something similar helps a lot with the sort of brain foggy-floatiness that I sometimes get if I've been sitting up or standing too long.  

All of the possibly impairing daily meds I have I take at night before bed which should help immensely with that particular issue.  Everything else is to be taken as needed and I'll just need to be sure I don't take it when I'm planning to drive.

I think we'll start out with very short drives and increase distance over time to see how I do. I'm really hoping I can drive again at least a little bit.  I would make things so much easier.  I could run errands during the day so Tom wouldn't have to try to fit them in to his workday or weekend.  I'd be able to get out a bit more and possibly have a wider range of potential employment. 

Attempts at time management

As I've mentioned before, I want and plan to eventually open an Etsy shop and see if I can get it going.  Unfortunately, time management is pretty craptastic when you're not only chronically ill, but also unpredictable from day to day.  As in, I have no idea how I will feel from day to day, whether I will get to sleep at a decent time and sleep well or whether I'll be awake until 4AM or will wake up with my brain refusing to function or in so much pain I don't want to do anything but cuddle with the heating pad and whichever of my boys (Tom or Oreo) is convenient at the time.

It's also really, really hard to get out of the mindset of "I'm sick, I should rest."  This might sound contradictory, as I frequently complain that I've overdone it, but the two do sort of go hand in hand.  It's challenging to find a happy medium when the goal posts move all the damn time.  It's also sort of hardwired into people and animals to behave in certain ways when they're sick - to slow down, sleep more, become more sedentary, etc.  Unfortunately, I can't really do that and function.   But it's hard not to.  And it's been very hard for me to set a schedule for myself because I don't know how I'll feel or what I'm really capable of and because it's hard to set a sort of floating schedule.  At some point, I'm going to have to just go ahead and start doing stuff at 1 AM if that seems like the best time for me on that day.

All that said - I've taken the plunge.  I'm experimenting with Remember the Milk as of last night.  I have it set up (I hope) to give me recurring reminders for basic household tasks (like dishes or dusting, etc.).  I also have set up dates by which I'd like to do certain things like actually open the Etsy shop and get things made in preparation for various upcoming holidays.  I'm hoping this is an achievable goal.  I'm also hoping I won't be really upset if I don't manage it.  :P  Anyway, the idea is that I'll look at my to do list with the dates and be able to say, "okay, I feel up to doing X today and it needs doing in the next 3 days, so I'll get started."  I'm also going to have to work on chopping up tasks into smaller bits.  I can't sit in a regular chair or stand up and bend over things for longer than about 15 minutes before I'm in agony. So, until I find a better chair or some other solution, I'm going to have to set a timer.

I also need to quit spending as much time as I do online.  That will be a hard one.  Since I don't go out much and don't really like phones the internet is where I manage most of my human (mostly, I think) interaction.

Anyway, that's the goal for the next few weeks  - to try this stuff out and see how it works.  Wish me luck!

Small Victories and Confessions

Today I made my first solo trip outside the new apartment and caught a bus to make it to an appointment. This may not sound like a big deal, but given the trouble and pain I have with walking along with brain fog and some sort of general anxiety, this is kind of a big deal. I am super proud of myself. The trip also reinforced my liking of the new place - just three little steps to go up to get out as opposed to three narrow wooden steps down, a turn, and another 3 or 4 steps, plus two more steps down with no hand-rail and a heavy-ish gate to open. I know this may not sound like a lot, but when every step is a) unpredictable; b) an effort that requires thought; and c) often uncomfortable or outright painful all combined with pretty much constant low-level vertigo that makes you feel like you're falling forward or the ground is tilting up toward you it gets to be a bit wearying. Add in some loss of peripheral vision, general tiredness, and rapid muscle fatigue from using the cane and you can see why I don't go out much. :P

In fact, I often wonder what some people who see me on the street must think - a relatively young woman walking very slowly with a cane, legs spread out a bit farther than normal, eyes usually on the ground with occasional glances up for direction, and one hand a bit out to the side for balance and with what I imagine is a look of deep concentration on my face - I probably look pretty silly. Or possibly drunk. And, like I said, each step is unpredictable - it might be a normal stride or my hip may sort of lock making my leg swing out to the side and down or I might misjudge the distance to the ground or my knee may not bend. At least if I ever get dumped on Arrakis, I can totally avoid attracting a sandworm, so I've got that going for me.

Anyway, bus - managed to get on the bus and off of the bus and get to my appointment. My therapy appointment. I've decided to quit being coy about it because a huge part of why I write this blog is the hope that it might help other people. I see a therapist regularly and have for about a year. In large part, this is to help me cope with being chronically ill and especially to cope with not even knowing specifically what's wrong with me. It has also helped me cope with some unpleasant personal events unrelated to my illness. It has been immensely helpful and I have made a great amount of progress. While this might not be a big admission for a lot of people, it is for me. I like my privacy. I also like at least appearing to be relatively strong and self-sufficient. For much of my life going to see a psychiatrist or psychologist or therapist and being self-sufficient and tough were mutually exclusive. However, over the past few years I have come to realize that part of being self-sufficient and tough is knowing when you need help and when and how to ask for it. So, I really want to encourage people - if you think you need help or want help, whether you're chronically ill or just stressed out or having a rough patch, please look into seeing someone. A lot of communities have sliding-scale clinics if you aren't insured or your insurance doesn't cover mental health. It isn't an admission of weakness or a massive character flaw. It's helping yourself to help yourself.

Okay - that's done. I'm not planning to go into detail about my therapy. Some things are private and personal though and while I try to make this blog a personal place, I also don't want to make it too personal. But I wanted to say that I go because I know that I associated a bit of stigma or shame with it and I think that's terrible and I don't want other people to feel that way. Okay, off the soapbox before I fall off.

I also did a bit of cleaning today to get some shelves ready for use in the kitchen (they were gross). And we've done a bit more unpacking. Also, Oreo nearly got winged in the head by the mail coming through the slot in the door today. At the moment he's demanding his daily dose of Daddy adoration. My boys are so cute. ;)

This Is My Blog: The Gorilla In Your House

This Is My Blog: The Gorilla In Your House

Fabulous analogy for dealing with chronic illness.

Breakdown the First

As some of you may remember, we are currently awaiting results of the genetic testing ordered by my neurologists.  Specifically, an Ataxia panel, which covers various forms of spinocerebellar ataxia and other fun things.  Some of these things could kill me soon-ish, some could result it partial or total paralysis, restriction to a wheelchair, a long slow decline in which I am no longer able to breath on my own or swallow, possible dementia, and a host of other heart-warming symptoms.

The test results are in but are being "held" until I come in in person.  That was initially going to be in July, but after some mild prodding, it got moved up to June.  It's also probably worth mentioning that when I asked at my last appointment what the genetic tests were for, they refused to tell me, even when I asked, "So, what are you looking for with these tests?"  The response was, "oh, don't worry about it, if anything comes back positive, you'll have lots of interesting things to talk about at parties."  Seriously.  Not making this up.  This is not the first time this has happened.  I've let it pass before.  I don't intend to do so again.

Fortunately, I am both literate and not a complete fool and was capable of puzzling out, in a manner that would do Sherlock Holmes himself proud, what it was they were looking for.  In other words, I looked at the lab paperwork they handed to me.  I didn't even have to whip out my large vocabulary or write anything down to look up later.  It said, in plain English - Ataxia Panel.  Clearly, my deductive reasoning skills are to be feared and worshipped.

Also, as I am familiar with the use of both a computer and Google, and have devoted pretty much the last 10 years of my life to learning how to do research, I had already guessed by the range of questions I was being asked that they were getting interested in my cerebellum.  This was confirmed when I cornered the resident who also "cares" for me and asked what was up. Apparently the first MRI they did, when they re-examined it, showed some possible cerebellar atrophy.  Of course, they didn't notice that 10 months ago.  Why that is is something I best not speculate about...

Anyway, this is what I've been coping with since late April and more so the past few weeks since I found out that they won't tell me my results by phone or email.  I've been trying to stay calm and upbeat, and have been reasonably successful, but the toll is starting to tell.  I have more trouble sleeping, even though I'm exhausted.  I've had a few nightmares about being paralyzed and able only to move my eyes or being told I only have a few months to live (highly unlikely, but still...).  I have tried to be optimistic and hope that they simply don't have conclusive results to share or that someone just cocked up the test (if that is the case, I will be highly pissed that they couldn't just tell me that).  But I also catch myself at odd moments trying to make a deal with...I don't know - God, myself, Obi-Wan Kenobi - "just let it be my legs; please not my eyesight; please, don't make me loose my mind; please, as long as I can still read and craft and eat..."

I've managed, for the most part, not to have a crying jag, until last night.  Right after a shower, I just lost it and started blubbering.  Fortunately, Tom seems to have a 6th sense for imminent ferret-crises and he came to comfort me (because he is awesome).  And Oreo overcame his deep-seated fear of the bathroom to join us (because he was lonely in the living room).  The truth is, hard as I'm trying to be brave and not to whine or be morbid or be an attention whore, I'm terrified.  I'm furious - no one should have to sit and wonder about things like this for weeks on end or be treated like an idiotic child by their doctors. What is going to happen? There aren't a hell of a lot of treatment options for ataxia - care is primarily supportive.  I'm afraid of what they're going to tell me and I'm afraid of the inevitable confrontation when I finally tell them how inappropriate I find their behavior.  Smack-talking to the contrary, I usually try to avoid such things.  And partly it's because I am so very angry that I'm worried, because I know that the more "overwrought" I seem, the less seriously I'll be taken (if that's possible).  

I am at least happy to have found, in my research, that there are specialists here who deal with Ataxia and they are very highly regarded by their patients.  And I do have a wonderful support system.  I just have to get through one more week.

Reality, "Negativity", and Acceptance

Being or becoming disabled requires a lot of adjustments. Some of these are obvious – changes in lifestyle, in jobs, in relationships, in daily activities. It requires a pretty major mental adjustment, too, one that often isn't obvious, or at least wasn't for me. My illness has been gradual in some ways – increasing fatigue and weakness over the span of years – and quite rapid in others – the onset of movement disorders, major increases in fatigue, etc. At first, I went into this with the idea that my doctors would figure out what the problem was, fix it, or at least figure out a way for me to compensate, and I would go on my merry way. Over the past year, it became pretty clear that that isn't going to happen. Realizing that not only is it extraordinarily unlikely that I'm going to wake up one day and be fine, but that my whole life now needed to change was, to put it mildly, intense. Accepting it was even harder.
Part of the issue is that I think we are taught to approach all sickness as something to be defeated or gotten over. This isn't necessarily a bad thing – there seems to evidence that mindset plays an enormous role in recovery from thing like cancer. A lot of us, and I definitely was (and to an extent, still am) one of these people, are also taught to “walk it off” or “push past it” and to hide or deny our symptoms. Again, this isn't necessarily a bad thing – fear of embarrassment, concern over keeping a job, avoiding making others uncomfortable, etc., are all good reasons to try to hide symptoms or deny that there is a problem. Unfortunately, it can also be very counterproductive.
I finally accepted that I am disabled, am likely to be so for the rest of my life, and that there is a chance my condition may decline a few months ago. I found it enormously liberating. Instead of feeling like my entire life was on hold until I was “well,” of being afraid to undertake new projects, of not knowing what I was going to do next, I could finally start looking ahead. I now plan based on how I feel now, not how I felt a year ago or 5 years ago, or how I wish I felt. That means that I have to set the bar quite a bit lower, but it also means that I have realistic goals and that I'm not constantly frustrated and depressed because I can't do x, y, or z. I've also come to see the silver-lining in getting sick – I've come to appreciate my family and friends, most especially my husband, even more, I'm under far less stress than I was as a graduate student, I'm less likely to feel guilty for spending time on things that I enjoy (I'm still working on this one), I'm more in touch with my creativity. In short, I'm much happier. I'd like to still be able to walk several miles without even breaking a sweat, or work full-out on a research paper for hours on end without getting utterly lost, but I realize that I can't and I've stopped feeling guilty and bad about it. Instead, I try for a few blocks a day and a few easy paragraphs on the blog. I won't go so far as to say the trade was worth it, but it could be much, much worse. The majority of my various doctors and specialists agree that my new mindset is much healthier and better for me and realistic.
The downside to this can be in relationships with other people. Most of my family and friends also agree that accepting my disability and working forward from it as good things and they've been wonderful about helping me cope. Unfortunately, there are a few people who don't see it that way. Like I discussed a little bit above, I think many people view illness or disability as something to be overcome and/or denied. So, for these people, I think that my acceptance looks like defeat or negativity. Some people have been very direct about saying this and I prefer that, because it's easier to have a discussion and explain how I think acceptance is very different from negativity or defeat. With other people, it can be much harder as it tends to be clear only from their actions or implied in their words that they feel it's negativity. I suspect being unfamiliar with the details of my situation probably contributes as well – on a good day I look like a relatively attractive, healthy young woman who happens to have a cane. Pain doesn't advertise, I've learned to compensate for or hide my tremors unless I'm having a particularly bad day, and my balance problems are also fairly hard for others to notice.   My fairly direct manner may also contribute - if I'm having a bad day, I say so.  If my hands are shaking badly, I say so.  How is anyone going to know that I need help going down those stairs or opening that bottle if I don't say so?  And I tend to crack jokes about it too.  The "negativity reaction"  is something that still bothers me, however, even though I know I probably shouldn't let it.   I'm tempted at times to snap at people "I'm not freakin' negative, you jackass, I'm a realist, and that's different.  Stagger a mile in my shoes!"  Obviously that would be counterproductive.  Instead I fume a bit and then go find something distracting.
I'm sure I'm not the only one with this problem, but I wanted to put it out there for others to see, those with and without disabilities. Obviously, not everyone approaches their health in the same way and what has worked for me may not work for other people, but I think keeping these things in mind can be helpful in basic, everyday interactions for everyone. I hope anyone with any thoughts will feel free to post here if they'd like.