When Accommodations Conflict (Continued)

Reflecting on the extremely thought provoking post by abbyjean earlier, I was walking to breakfast with The Guy (caution, try not to walk while lost in thought, OYD) on a day when I was low on sleep, high on pain, and therefore using my cane. (edit: I just saw my typo! I had a funny visual of me trying to balance on a can! HA!)

Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.

There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.

I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).

So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?

18 Comments

  1. I think a lot of people have the “have to take medication so I can get things done but if I take the medication I will go to sleep” problem! In my case, it’s anti-vertigo medication. I do have an in-between step of car sickness medication, but that’s not always helpful.

  2. Oh, the multiple disability/illness paradox. Here’s mine.

    1) I’m tiny, and comparatively weak for my siz due to CP

    2) I have difficulty with handwriting and carry a laptop for all but the briefest of writing tasks. The laptop is heavier to carry than a pen. And it’s comparatively more heavy for me, due to #1.

    3) I have poor balance due to CP and chronic hip pain and walk with a cane. This means I only have one hand free and can be easily pushed off balance by carrying around things like laptops, which I need due to #2.

    4) Backpacks slip off my shoulders or pull me over backwards, so I end up with either a tote bag or a luggage rack, which is more challenging to tote/pull due to my gait from #3.

    5) I have diabetes, so I need to also carry around a glucometer, insulin, glucose, snacks. Which takes up space and weight in my pockets or totebag, already a challenge due to #3 and #4.

    6) Conventional wisdom is that exercise is good for diabetes. But I can’t tolerate many forms of exercise due to #3.

    7) Furthermore, things which aren’t considered exercise to most non-disabled people, such as a couple of flights of stairs, can be exercise to me, due to #3, and affect my blood sugars, see #5.

    8) I also have asthma, which means inhalers to carry around (#4) and have difficulty tolerating typical “exercise” (#6-#7)

    9) I generally manage to find an equalibrium with #1-#8. Than invarialbly some non-disabled coworker wants to know why I carry around so much stuff and why I “don’t just get a backpack.” Um, because I really feel like explaining #1-#8, while simultaneously doing #1-#8, not to mention my actual work related duties?

  3. “The flip of that coin is that I have side effects which means that I can not always drive places…”

    This is one of the issues I have, too. I sometimes take narcotic pain relievers that significantly impair my fine motor skills and reaction time. So I can’t safely drive on them. That said, I think I can’t/don’t drive *safely* with the pain, either, so it’s a 50/50 sort of thing. (However, I do notice that others volunteer to drive more often if I ask because of the meds than if I ask because of the pain. I don’t know if this is because people overestimate the side effects of the meds or underestimate the effects of the pain or both.)

  4. Before I started to take the pill without interruptions, my endometriosis meant that I had a choice between spending four days every three weeks in intense pain- or spending them sleeping. So yes, I think the problem of tired/ being relatively painfree or awake/ being in pain is a very common one. And it was hard to deal with because three to four days in bed without any realy activity always brought the risk of sliding back into the inactivity of depression- but being in pain also held that risk.

  5. It’s kind of the same for me, except that I always use my cane, but there’s always the question of leaning on it a lot to relieve my lower body or leaning less to relieve my upper body. Also, there are a few classes where I have to take a lot of notes and it’s hard on my hands, but carrying my laptop around would be hard on the rest of my body. (Of course, there are these little netbooks now, but I’ll already need to buy a new laptop soon because mine is old, and I need more than a netbook when I’m at home, so it would mean buying two computers…) Also, sport would probably help a lot with my depression, but is pretty much impossible with the fibro. And the antidepressant I have to take to go through my day make the brainfog and tiredness worse. Same goes for the pain meds I take once in a while. Coffee can help with that, but it tends to make my (bordering on borderline) depression worse.
    Come to think of it, I’m a whole mess of conflicting accomodations.

  6. Not sure this is exactly what you had in mind, but I have to choose between using my powerchair on an outing, and relying on the people with me to help get the beast in and out of the car or using my manual and having to rely on the people with me to push me the whole time. Powerchair wins in my mind, but my family tends to fuss about it and ask me to use the manual. Nothing like the person charged with pushing you getting distracted and wandering off. Or the time the younger brother took the ramp at a funny angle and tipped the chair.

    Then there’s the eat and be sick or don’t eat and be sick in a different way conundrum.
    When it comes to taking the pain meds and sleeping or not taking them and suffering, sleep always wins. I’m so over suffering.

  7. I have near constant migraines (regular and hemiplegic) and I definitely balance caffeine that way. I balance pain-relief with “will this cause my heart to start skipping, thus tiring me out a different way” and “will this cause a worse migraine tomorrow?” If it’s a case where I think paralysis is coming on and I’m out or working, I definitely hit the coffee hard and pay the price later when I’m able to lay down.

  8. ha, i am the queen of internal accommodation conflict. i ended up with osteoarthritis in my wrists at 22 from a combination of hyperextensible joints and repetitive stress. the spearmint in the icyhot that lets me function on bad days triggers migraines. i had to special-order supplements for the arthritis because i’m allergic to shellfish and couldn’t find a vegetarian version at my local pharmacy. those, plus the birth control i was on for ovarian cysts (not pcos, that would be too simple – the doctors have no idea why i get giant cysts that burst incredibly painfully every so often, and the pills didn’t even help), made my blood pressure skyrocket, which gave me even more frequent migraines.

    the acetaminophen in the excedrin i took for the migraines, along with some past damage from reacting as badly as possible to accutane as a kid and an attempted overdose on tylenol from that, screwed up my liver function, which limits the possibilities of medication for my post-traumatic stress disorder – and the post-traumatic stress disorder means i can’t handle seeing a gynecologist at this point, so the ovarian cyst issue, along with the “i only get my period every four months, but then i bleed so heavily i can’t go more than ten feet from a bathroom” issue, is going untreated.

    …and don’t even get me started on the exciting synergy between ptsd and adhd. at least my life will never be boring?

  9. Mine are pretty petty, but hey, it’s my body.

    Of course, I have the issues of medication (antihistamines, pain medication, anti-emetic) knocking me out or just leaving me a bit out of it.

    One problem was being on the fentanyl patches. They irritated my skin so much because of sweat that they we had to change the schedule from the traditional “leave it on for 3 days” to every other day. I’d sweat so much (I started using them in the spring of ’07) they’d be useless. And they worked! So I’d ride my bike because I was pain free and clearheaded, and they’d fall off. Of course, the skin irritation was a bigger problem, because there were sores where the edges had been and it took a few weeks of not wearing them for my back to heal.

    My biggest issue is heat. It works wonders on my pain. Except I get overheated really fast, and if I get too overheated, I get sick to my stomach and my skin gets irritated. Right now, I’m grateful for the malfunctioning AC in the dorm. It was 80 F and that made using the heating pad a problem, because I’d get so hot. The AC is on now, and nothing I do can warm the room up, so it’s at 60 F (and it’s unseasonably cool – 50s and 60s F outside), so it’s less of an issue.

    But I remember this winter, standing in front of the fire (my back to it, event though my stomach hurt) and having to do it in shifts (and not just because I was “hogging” it according to my sister) because I’d get so red and so overheated.

    So I have to balance the need for heat to relieve the pain and the fact that I don’t *do* heat. In my icebox dorm room, it’s working. But the house won’t be 60 F because that’s a bit expensive, so it’ll be interesting to see what happens.

    Also – I should exercise to help my mood and my pain (just walk!) but the pain is so bad, walking is bit too much sometimes. When I’d call my mom saying the pain is out of control, I’m gasping, deep breaths hurt, she’d tell me to take a walk. Thanks, mom.

  10. A little further from just conflicting accommodations, but accommodations/medication vs. identity.

    The estrogen in birth control or any other hormonal pills prescribed for my PCOS (which is REALLY not so simple) has effects that cause great me distress and feel really wrong to me as a transmasculine person. So it’s a balance between having a “working” body, which apparently is having “normal” androgen levels and being able to have children, and feeling OK in my body. Unfortunatly my lack of “treating” PCOS in this way seems to have led to other medical complications that that are affecting my “main” psychiatric disability and I am probably going to have to give in.

    So disability wins over gender identity?

  11. I’d say these kind of trade-offs are more the rule than the exception.

    One of the biggest ones that seems to be true for everyone I know with MCS and CFIDS is that what is good for your mental health is bad for your physical health, and vice-versa.

    For example, you want to leave your house or see friends, but doing so will exhaust you and cause exposures. So, you have to choose: living in isolation, in your “envelope,” between four walls, or making some connection with humanity and/or the natural world and then being slammed with symptoms and/or risking progression of the disease.

    It sucks.

  12. p.s. it particularly sucks when (usually well-intentioned but uninformed) people (friends, family, psychotherapists, doctors) try to get you to “do something for yourself” by going out and overexerting or having an exposure, with no idea of the damage that will cause. And it’s like poking an open wound, because of course we are already desperate for connection and fun, so we WANT to follow teir “advice.” Also, the lack of understanding about what constitutes an exertion or an exposure, e.g., sometimes having or expressing emotion is too much of an exertion, so someone might encourage you to “let it out” without realizing that crying or even talking about your feelings will cause payback the next day and days to come.

    I’ll stop whining now.

  13. I always have the problem that I really need lots of time outside in the sunshine to keep me from being too depressed. But sunlight (and other stuff outside, and the energy that it takes to go outside for any length of time) causes seizures and migraines… and even if I don’t get a migraine or a seizure, I’ll be so worn out from the neurological stress that I can’t get any work done that day, and then I’ll feel even more upset and self-hating because I didn’t do any work. It’s a giant mess with no good solution.

    But of course everyone insists on telling me, “Oh, you would be so much healthier and happier if you would just get out more!” Thanks a lot, world.

  14. @ Sharon Wachsler: I think that one gets overlooked. Often. Like, vying on constantly by circles of people who don’t have to deal daily with such things.

  15. Pretty much every medication I’ve tried for my migraines makes me much spacier, more brain foggy–which, combined with my autism, makes me exceptionally forgetful and really slows down my language processing (which wasn’t a big problem before I had to start taking prophylactics for the migraines). In the past two and a half years that I’ve been on a variety of combinations of meds for my migraines, and I now meet the criteria for primarily inattentive ADD–but I don’t have ADD at all! I have autism (with its overlapping executive function issues with ADD/ADHD) and have added an attention deficit from my meds. It would be funny if it wasn’t obnoxious.

  16. The medicine I take for my Crohn’s makes me terribly sleepy, unable to get much done when I get home from work.It also makes me have a lowered immune response. If I don’t take it, well I’ll poop all the time, and be tired from that plus in more pain. Then I have depression, and people always say exercise but if I exercise I throw up. And I have a lot of joint pain from the Crohn’s. The only good interaction is that I also have psoriasis (which has a chicken/egg relationship with depression) and the medicine I take for depression helps me not to flare with the psoriasis!

  17. Yes, I put myself also into the walking accommodations conflict category.

    One example: I already have IBS. I also need lots of strong narcotic pain meds in order to just be capable of getting up and moving around. These cause my bowels even more agony. So I am forced to take even more medications to counteract those side effects. Like I really need yet more medication in my already way over-medicated body.

    Another: I have raynaud’s syndrome which means my hands and feet are *always* cold. But with the fibromyalgia, I also have weird temperature issues where I can’t handle much cold OR heat, and also sensitivity issues with clothing. I often feel cold when I should feel warm and the other way around. I’m often cold and warm simultaneously in different parts of my body. I’ve been given lovely hand and feet warmers which you put in the microwave or whatever but they make my hands and feet TOO warm and I can’t tolerate them for more than a few seconds. I can’t stand the feeling of being bundled up in layers, but dressing in layers is the only way I can handle my shifting temperature issues. Also, this issue with being bundled up sucks during the coldest months of winter because I either have to deal with the severe discomfort of all of those extra layers, or I have to just throw a warm sweatshirt on and freeze when I’m outside. I almost always need socks on my feet for warmth but socks BOTHER my feet so I’m always kicking them off. Erg.

    Another: OCD tells me I have to wash my hands a lot, but fibro tells me that getting up to wash my hands yet again is just not possible. OCD and fibro conflict A. LOT. actually. Constantly, really.

    And then there’s just all of the different types of pain in all of the different parts of my body and how positioning myself in one way makes some other place hurt worse, but then re-positioning hurts another place worse and there is NEVER any GOOD positions to be in.

    And oh. I need to get to medical appointments on a somewhat regular basis, but I often don’t have the spoons to get to them! Same with needing exercise, benefiting from cooking with whole foods, spending time with friends and loved ones, etc. Pretty much every single second of my day is balancing between one accommodation and another.

  18. Rosemary – And oh. I need to get to medical appointments on a somewhat regular basis, but I often don’t have the spoons to get to them!

    Wordy McWord.

    And then there’s the dropping off of the prescriptions (and when I was on fentanyl, the fun calling of all walgreens in the area to see who carried the exact dosage and amount) and the wait and the drive.

    Last week, I had an MRI wednesday in the next county, an appointment with dr ego on thursday, and an appointment with pain management on friday. exhausting.