Stop and think: invisible access for invisible disabilities

This is my first personal post about being sick. A “coming-out”, to some of my online friends. And a whole lot of elaboration, for those who know I’m sick, but don’t know the details. It’s taken me ages to write, and I haven’t re-drafted it: here are my musings, in the raw.

Becoming Sick

I have moderately severe chronic fatigue syndrome, or something that looks very much like it. I first got sick two and a half years ago, quite suddenly. After a few months of feeling just a bit off, not bouncing back with my self-prescribed generic good-food-and-fun-and-exercise cure for tiredness, I suddenly crashed. Over the course of about two weeks, I crashed hard. I became unable to work, and daily living was full of what suddenly seemed to be insurmountable obstacles. I dropped things, felt off balance, walked into things, had large-muscle twitches, thermoregulation problems, I was suddenly blanketed in pain. My short-term memory came and went and I couldn’t concentrate on more than one thing at once, a huge change in cognitive function for me. Most noticeably, activity didn’t pick me up like it always had in the past. Before, if I felt a little off I could go for a bike ride or a swim or a choir rehearsal or a night out dancing, and feel invigorated by it. After, I’d walk a couple of blocks then flump down absolutely exhausted. This was the first time I’d ever felt like this, and it didn’t make any sense! I felt happy enough, apart from being terrified that there was something awful wrong with me (lupus and MS were high on the differential at the time); there were no clinical signs of depression or somatisation.

This didn’t stop the first specialist I went to, a neurologist, insisting that I must must must be depressed, of course. I was a woman. With a toddler. Of course I was depressed! Just deluded and in denial, as hysterical women so often are. The abnormal blood tests and lack of clinical signs didn’t register in this simple equation: ovaries + fatigue = probably depression. Ovaries + fatigue + motherhood = certain depression.

Thankfully, I got past that, though not without a fair bit of righteous annoyance on my part. Depression would have been just fine by me as a diagnosis. I know how depression is treated. I know it can be managed, if not cured. I don’t feel a stigma about it; let’s face it, many, perhaps even most, of my close friends have had depression. But it’s a positive diagnosis, not a wastebasket one. Lesson one: no clinical signs of depression means no depression, people.

I found a GP with a clue, and stuck with her, so happily I’m not without competent, non-judgemental medical care. Sadly, not all people with CFS are in that position.

Discovering Spoon Theory

I first learned about spoon theory when I was poking around reading up about lupus. Christine Miserandino, a person with lupus, was trying to answer a question by her friend. The friend had asked her what it was like being sick – not about her symptoms, but about what it was like being her. Stuck for a metaphor, Christine grabbed all the spoons off the table, and explained that every day, she had a very limited number of spoons, unlike a healthy person who has a near-unlimited spoon supply. Each spoon stood for one chunk of activity. The friend started out with 12 spoons, and had to run through a day, giving up one spoon for every thing she did: including getting up, dressing, showering, and so on. The friend was down to half her spoons before she’d got to work in the morning – and the light dawned. It dawned for me, too.

Every day, every moment, is a tradeoff. Every piece of activity has to be a conscious choice. Normals never have to choose between cooking and cleaning up, between showering and playing with their kid. Never have to think ahead to the weekend, and say “I’m having lunch with a friend on Saturday, so I have to keep Sunday completely free to recover.” Spoons are always my first thought when planning out my life.

An example: Today I changed the bedding. That’s a fair chunk of spoons. I started planning it a couple of days ago, when I knew the bedsheets had to be changed. I have learned from experience that on a bedsheet-changing day, I’m not going to be able to get much other vertical time once essentials are accounted for (personal grooming, lunch, picking my kid up from school). I figured Friday would be a good day. We could have our weekly takeaway dinner, so I’d be able to steal the cooking spoons. And Friday Night is Movie Night for the lad, so our evening will consist of hanging around on the bed, watching something with dinosaurs and munching popcorn, a low-spoon activity. I also checked forward to our Saturday plans: no excursions, so I can use up all my spoons on Friday instead of keeping some in reserve.

So I planned a couple of days in advance; I just changed the sheets; and now I’m horizontal. And wondering, just a little, how I’m going to get the energy to do school pickup today – maybe I’ll drive the block to school to save those couple of spoons for tonight? I’m not sure yet.

I used to spontaneously say “Oh, I’ll just quickly change the sheets now”, somewhere between getting home from work and going out for a night on the town. No more. Life has changed. It’s taken me two and a half years of being sick to get to this point of juggling my spoons relatively effectively. As recently as six or eight months ago, I was still on the push-crash roller-coaster, using up all my energy on one activity without thinking forward to the next, and spending days on end crashed out from not pacing thoughtfully.

Some people who have never been through this view the spoon-rationing as “giving in” to the illness. I guess these are the same people who subscribe to the contorted, fucked-up cognitive-behavioural causality model of CFS: they think that I’m sick because I’ve convinced myself that I’m sick, and that I have limits simply because I’m spending my hours and my days working within my limits. What they didn’t see was the many months I spent denying that I had limits, busting them, and paying out for it. What they are looking at now is survival, not surrender. I’m gleaning the positives from an unpleasant situation; I’m eking out a life both happy and worthwhile, from the boundaries I’m stuck with – just like anyone else on this planet does. I don’t need pity, but I do need consideration.

Two Things To Understand About Me

Before I leave Useful CFS Links, I want to drop you another link: the Open Letter to Those Without CFS/Fibro. A couple of these “Please understand”s really resonate with me:

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

Contemplating Disability: What Counts?

The line between “chronic illness” and “disability” is a blurry, wobbly, contested one. Many people seem to think that “disability” is about having a mobility impairment and using a visible mobility aid. People in wheelchairs “count” as disabled; people with invisible disabilities don’t. Some people consider “disability” to be something a person was born with, or acquired catastrophically and traumatically. Considering the idea that I’m disabled has been a difficult one for me. Though I’ve worked hard on combatting cultural devaluation and misunderstanding of disability and disabled people when it comes to others, for some reason turning the disability light on myself has been a challenging step. It took me nearly two years of being sick before I applied for a disabled parking permit, and I cried at the doctor’s appointment getting the parking medical form filled in. I might intellectually know that it’s not “surrender” to accept the D-word, but gosh, it feels like it. Why?

Passing

So I pass. Most of the time, I pass. I’ve used the parking permit maybe four times, because I don’t want people looking at me, staring because I’m not in a wheelchair, conspicuously inspecting my car looking for a placard, heckling me and asking what my diagnosis is, just as that TV current affairs show encouraged them to do last year.

I go to social events, and pass. Sometimes. There are some places I just can’t go, if there’s nowhere comfortable to sit or lie down, or if there’s no hard shade (I’m sun-sensitive). I find a chair or a picnic rug, and sit, and chat, and Don’t Mention The Illness. People I don’t know see me sitting still and asking friends or family to bring me a drink or fetch me something I need, and I worry about them wondering why I’m so imperious and lazy. But I work hard on not caring.

Passing is exhausting. So is disclosing, coming out. It all uses emotional energy – “Will they think I’m faking?” “What words will I use to explain?” “What if they don’t believe me?”

Invisible Accessibility for Invisible Disabilities

The first time I truly realised how clueless people are about disability and access was at a local Apple dealer. We needed to do a bit of paperwork, and I found myself standing at a desk, with the computer guy seated on their other side of the desk. I looked around for a chair, and couldn’t find one. I asked “Could I have a chair, please?”, and was told that they don’t have any chairs for customers. “I’m not feeling well,” I said, “Could I please have a chair while we do this paperwork?” and was again rebuffed. “This isn’t great disability access”, I tell the dealer. He looked at me as though I had two heads, and snapped, “Disabled people bring their own chairs.” I explained that not all people with disabilities use wheelchairs. I was then subjected to a lecture about how sometimes disability is all in people’s heads, and if only they would get out and about more, they wouldn’t have a problem. What an monumental arsehole.

I’ve spent the last nine years getting a Bachelor of Arts degree. The last two years I’ve done in off-campus mode, though my university doesn’t officially provide such a mode. This is thanks to several absolutely fantastic lecturers who were happy to work with me, discussing tutorial material by email, accepting emailed PDF assignments, allowing flexible deadlines. I thank those people deeply. And the lecturers who snarkily refused to contemplate flexible delivery can nick orf. I thank my wonderful partner, who fetched and carried the books, videos and paperthings that couldn’t be transferred electronically. I thank the librarian aide who helped me out with items for pickup, and I thank the Student Services Office, who somehow find their way around the convoluted university systems.

Most of the time.

Between going into off-campus mode, I spent a short while being sick but attending classes. This was before I got my ACROD permit, so I needed to apply for a university disability parking permit and library accessibility pass. The application system was so ridiculous as to be laughable, and my feedback about the system, as far as I know, was icily received and promptly ignored. I present it here for your amusement: How To Get A Uni Parking Permit, for People With Chronic Illnesses And Mobility Disabilities.

(Background information: the campus is fairly spread out, about a kilometre from end to end. This is taking place before I have a permit, so I can’t park close to the buildings and offices.) We started at Student Services, not too far from the south end of campus. Having made this appointment specifically to get the access passes, I thought I was going to just sign something and pick them up. I don’t have a huge number of spoons this day, and just driving to uni has been pretty tiring. But no. I meet the Disability Officer, and she says a couple of things, then says we need to go up to the Parking Office. At the north end of campus. “What?” I say. She says “We need to go up to the parking office.” “What the fuck?” I am tempted to reply, but I end up just doing the two-heads-stare. She twigs, and says, “Oh, you can drive, I’ll walk and meet you there.” So I make my way back to my car, and drive up to the Parking Office, try to find a space (paid only, for non permit holders), and go to the office. There’s no seating, no low counter; you must stand at a high counter to get served. Exhausted, I sit down on the floor while waiting, and bystanders start backing away from the crazy person. Getting up, when the time comes, is a struggle. The parking permit is sorted.

I’m wondering, at this point, what happens with the library permit. “Off we go”, she says, “We need to go to the library now.” I take a breath, steel myself, and drive back down to the library, in the middle of the campus. Parking is a fair way from the library entrance, and there is a large flight of stairs to get up. Ramp access to the library for non-permit-holders is around the other side of the huge building, and I don’t have the energy to walk around there. So I wait, again with no seating, outside the locked disability access entrance for the Officer. We meet, and go in. There’s a service counter on the library ground floor where they dispense disability access cards. You guessed it: no seating, and a high counter, standing room only. I ask for a chair, and the service person disinterestedly points me to a corner of the next room where there is a stack of chairs. I am in spoon deficit by now, and have a choice to make: do I stand at the counter, or do I go and get the freakin’ chair myself, so I can sit? I don’t even have the energy to go into an explanation of why there should be seating, and how completely inappropriate it is to tell someone at a DISABILITY SERVICE COUNTER to get their own damn chair. I get the chair, and slump down onto it. There is a wait, and eventually a card eventuates that gives me access to the locked elevator system in the library, and the library room with disability facilities in it, including various bits of accessibility equipment, comfy chairs, and a mattress to lie on.

I have a point, I think, to all this rambling, and that is: Stop and think. Use your brain. Encourage people around you to use theirs. Get past the wheelchair model of disability access. Just as people who use wheelchairs shouldn’t have to go to the back of a building and use a freight elevator, people with invisible disabilities need to be considered when planning buildings, access, and service provision. People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day. Businesses need to do some basic staff training about the variety of invisible disabilities. Consider the whole range of somatic, sensory, and neurological issues and atypicalities, from CFS to cancer to dyslexia to deafness to autism to mental illnesses. Different people have different access needs; mine are really very simple, and start with access and seating. Don’t lock the elevator. Don’t make people walk the long way around to get to an elevator or escalator. Put in lots of chairs, benches, a low service counter for chairs and wheelchairs and little people, install an armchair in a corner for people to take a moment. This goes a long, long way to letting an ill person access your facilities.

Oh, and don’t tell them it’s all in their head.



Categories: health, Life

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41 replies

  1. The wally asking you to fetch your own chair!
    You know, that whole uni parking permit story would make a great short film. It’s such a pearler exemplar of How Not Thinking Is Not Helping.
    I remember doing disability assessments for patients following neurological/orthopaedic impairments, they often also had some invisible disability problems: passersby would often speculate how ramps, rails, resurfacing etc would be just a waste of money because if they needed “that much” help they should just be in a nursing home. As if nursing homes wouldn’t cost a hell of a lot more than a few modifications around the home! (But people in nursing homes are also invisible)

  2. This is a great article ““ illuminating and helpful for understanding a whole bunch of things. It gives me an awareness of experiences I haven’t had, but have wondered about. Thank you for taking the time to explain it all.
    I have a good friend whose mother has similar symptoms who went through nearly 15 years of the medical mill with no relief. She was told everything you can imagine (it was all in her mind was the most common). By chance she was switched to a new doctor in the 15th year who, upon hearing her long explanation of what she had been through, told her she probably had Lyme disease. He tested her for it immediately and there it was. No one had ever bothered to wonder if she had an identifiable disease ““ they just busied themselves treating the symptoms and telling her she was a hypochondriac. She still has most of the debilitating effects ““ many of those you describe. It sucks.

  3. I feel like screaming on your behalf. I feel sick knowing that this is happening all the time. It seems unbelievable that services for the disabled and chronically ill don’t even provide a freaking chair.
    I really like the spoons analogy. I can’t imagine what life would be like with only a limited number. Hopefully someone will make a breakthrough soon and find out what causes your illness so you can have all your spoons back.

  4. Thank you for describing my life so eloquently. I’ll print it up and distribute it to the “it’s all in your head” types. That way they’ll have to use their spoons while I spare mine.

  5. spoon deficit! i like it.
    i too am learning to live with this chronic fatigue shit. i’ve gotten reasonably good at managing my own activities, carefully spacing them out like you say, but it’s still hard coping with other people using up your spoons.

    People with invisible disabilities should have equal access BY DEFAULT, and not have to spend their time constantly educating people about their illness in order to get through the day

    yep. and yep.
    one of the things i’ve finally learned: the world almost never stops spinning if i just up and say, very politely, right in the middle of whatever, “i’m sorry, i have to leave now” and then do so without further explanation.
    good manners doesn’t require one to put up with assholes, nor does good manners require one to explain anything to anyone. one is merely required to be polite and civil. one is not required to be a doormat. i find it helpful to remember this when somebody else is using up my spoons.
    about depression. depression may not be the cause of the fatigue, but having your life inexplicably curtailed like this can sure bring on depression. i did for awhile go through a pain management regimen, trying [under a doctor’s care, not on my own!] combinations of various anti-depressants and pain medications. i eventually gave up on the anti-depressants, but the pain drugs were lovely and provided a much-needed respite.

  6. Beautiful explanation. Similar to what I would have written a few years ago had I not been too damn tired.
    Congratulations on staying at uni and getting the access you need. Learning to pace yourself is hard but necessary. For me it was the point when I started to get better. I still take care not to plan too many things for one day, but changing the bed isn’t a big deal any more, and cleaning the bath wont wipe me out for the next day. An exercise physiologist was most helpful, and told me to record what I was doing. Start small, laughably small (walking to the end of the street and back) do it for a week then increase it by a tiny margin. Never increase the activity level until you wake up with some energy the next day. Gradually you start getting more spoons and dashing round the corner for milk isn’t a big deal anymore.

  7. kate: just goes to show how differently people’s bodies react. Graded exercise didn’t work for me at all – a super-flexible pacing approach has been much, much better.
    (Walking to the end of the street and back isn’t quite laughable here. I do it for school pickup, when I’m not too stonkered, and it’s a huge chunk of spoons for me.)

  8. I’m a new reader, but I just had to say what a wonderful, well-thought-out post this was. I’m so sorry to that we share the devestating effects of this horrible disease, but I applaud both your ‘coming out’ and your premise that invisible disabilities certainly have their own, unique challenges that need to be overcome. A wonderful post.

  9. Thanks, NTE. I read your BADD post. You really find out who your friends are when you get sick, don’t you?

  10. Another great post. Thank you!
    I got CFS when I was 16 after failing to recover properly from gladular fever. For my final two years of high school I was really unwell – your spoons analogy is perfect actually: for my final two years of high school I had very few spoons available to me.
    Fortunately for me, I found a great GP very quickly and my school were very accommodating. During my particularly bad periods I would only attend one class per day (and then go home and collapse exhausted in a heap) and they pro rata-ed my marks for me so that I could still complete year 12 and get into Uni.
    I won’t offer you any advice on how to get well. I got well through sheer luck, while my brother still suffers despite having tried everything. Well meaning advice can get really old after a while…
    I will wish you all the best though. I admire you for doing what you do do (particularly these great posts).

  11. OHMYGOD! This is exactly how I feel and I think that the spoon metaphor is spot on. I’ve been afraid to that I can’t get disability parking because I only have a mental illness, but some days I skip class because I’m too depressed to walk to the bus stop, get off the bus, and walk to class. On days like that I don’t think I have any spoons at all. Thank you for this post.

  12. Cristy: that’s great that you got good medical care and education accommodations.

    I won’t offer you any advice on how to get well.

    And for that, I kiss you!!! Did you read the Open Letter? “If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.”
    On my personal blog, someone decided that this crosspost would be a super place to write cure spam for an energy healer/dowser. Asshat.
    Burrow: thanks for your comment. I’m sorry to hear about your spoonless days, and I hope they become fewer and further between for you.

  13. When I did a post about going on a mood stabiliser I had an awful troll who kept telling me that I couldn’t call myself a feminist since I supported the drug companies and that I should try herbal remedies instead. (Like I hadn’t tried that first.)
    Those people suck.

  14. The Thief of Many Lives
    The Reality of living with Chronic Fatigue Syndrome –or–
    Jeesh… why didn’t the doctor tell me all this stuff !
    Until you read “The Thief of Many Lives” you too may have questioned the validity of Chronic Fatigue Syndrome as a real illness. It is VERY real, especially for us the sufferers and our caregivers. The credibility and validity of this disease has long been a most difficult message to convey to our Government, Physicians, Healthcare Professionals, friends, families and general public.
    What makes this even more challenging than how we might physically appear is the inappropriate name given to such a serious and debilitating disease. Consequently, one of the worse things someone can say to a person with CFS is how well we look on a particular day … we must be feeling “better” … “better” than what? Death? Unfortunately, CFS victims generally do not feel better than death … warmed over or otherwise!
    Lengths of time go by, month, seasons, and then years when all of our reserve energy is used simply to eat and breathe and those are the “good” days. Unfortunately, not many see this as most people with CFS are left to suffer behind closed doors. Unexplainably, our cries for awareness, and validity continue to fall upon deaf ears. WAKE UP AMERICA !
    CFS is at epidemic proportions destroying lives and affecting millions of people worldwide.
    May 12th is International CFS Awareness Day. Please make your voice be heard. Inform others about the tragic impact this illness is having on you, your loved one and our nation.
    BE AWARE OR BEWARE … As you could be writing this letter from your bed next May 12th.
    Read The Thief of Many Lives here:
    http://kathy-mcspage.blogspot.com/

  15. A few summers ago, right in the middle of my MSc programme, I was hit with Mono AND Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.
    Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. What a nut. And this was even in a biological science, where you’d think they would have some kind of clue!
    I got over the Mono and Lyme, although I have joint issues now that may or may not be related. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, “All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.”
    Another is: “Acceptance is not the same thing as resignation.”
    I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths.

  16. My post of the week.
    I’m dyslexic, which doesn’t stop me doing stuff, but does create chaos reasonably regularly (along the lines of ‘gee you’re scatty, that meeting is next week, not today’).
    Thanks very much.

  17. Oh, that spoon analogy is perfect. I have a congenital heart disease (hypertrophic cardiomyopathy) that has caused my entire heart muscle to harden and become less flexible. I too plan chores days in advance. Some mornings I wake up and just know that it’s not going to happen. Instead of beating myself up about it, now I force myself to live (unhappily) with an unmade bed.

  18. How I love that people are writing about this. I have lupus, and it looks like I came out right around the same time you did:

    One of my readers pointed me to your post, and yes, oh yes, the spoon theory is perfect.
    Thank you for your openness.

  19. Hi,
    I found your post while searching some articles to show my boyfriend about understanding/living with chronic fatigue (he’s very supportive, but doesn’t quite ‘get it’ and I think sometimes gets frustrated at how little I seem to achieve each day).
    I’d like to thank you for such a well written description of life with chronic fatigue. You explained so well many of the issues that I have also experienced, particularly regarding the ‘invisibility’ of the illness. It is something that is very difficult to explain to people, especially when so many tell you it’s all in your head or that you’re lazy, or that you don’t want to get better etc.
    On an aside note, when I got down to reading the comments I realised that I’ve read some things you’ve written before (mainly as comments on other people’s posts), as you’re a friend of at least one of my friends on LiveJournal. It’s a small world I guess.
    Thank you again for such a wonderful article. I’ll definitely be passing it on to my boyfriend. Hopefully it gets across some of what I’ve been unable to articulate clearly myself.

  20. Hi Alice! Oh, yes, I do know you from elsewhere – we have mutual friends. Small world, as you say.

  21. I’ve friended you on LJ. I hope that’s ok. We seem to share a few passions/interests.
    Small world indeed. Have we met IRL?

  22. Alice: “Small world indeed. Have we met IRL?”
    I don’t think so? I know I’ve read your comments on other blogs, though.

  23. What a wonderful post and so encouraging to others. I’ve lived with rheumtoid arthritis since the age of 24 (14 years now) and still think the “invisible” part of the illness is one of the most difficult aspects. I hope you will be a part of National Invisible Chronic Illness Awareness Week – [URL removed] It’s a wonderful opportunity to continue to encourage others!
    Wish we could all start “SPOON COLLECTIONS” and have people be able to give them to us or pick one up whenever we are on vacation, huh?
    Bless you!
    Lisa Copen
    [Ed. note: URL removed as I found it indistinguishable from spam. Thanks for dropping by! L.]

  24. This has to be one of the most eloquent personal accounts of CFS that I have ever read. It’s such a shame that you don’t use your permit and park in the handicap spaces, but it’s very easy to understand why. People will stare at you as if you’re cutting them in line. You shouldn’t let those other people’s reactions stop you from doing what will make your life easier. You need to save yourself a spoon when it comes to going into a building. Thanks to commercials and other advertising, at least you can say, “I have Chronic Fatigue Syndrome.” when someone glares at you and they’ll probably understand that you don’t have to be physically deformed to need to be close to the entrance.
    Still, you shouldn’t let their judgments keep you from making your own life easier. It’s hard enough. And by worrying so much, you’re kind of increasing the gap between normalcy and invisible disabilities.

  25. Thanks Aaron. Happily, parking at the places I usually go (and the times I usually organise to go to them) is rarely an issue – I can often get a spot five or ten spaces away from the disabled parking, which is not a drama for me on a good day. And I just don’t go out and about on the bad ones.
    The last thing I ever plan to do is disclose my medical diagnosis to random strangers on the street. In the case of any in-your-face type heckling, which I haven’t yet encountered, I’m more likely to yell that I’m being harassed and could someone call security please.
    (Aside: just to let you know that I count two “You shouldn’t”s in your one short comment. Shoulds and shouldn’ts, when it comes to other people and the way they deal with their disability, can have a tendency to get my hackles up a little. They’re not up now, but I thought you should know.)

  26. As my friend says “Stop shoulding all over yourself.”

  27. Wow. Wow.
    I have to plan things in advance too. Changing the bedding has to be done -with- my husband, because it’s too exhausting on my own. Even “making” the bed is something I rarely do.
    Showers are my “biggie.” Not only is it vertical time (even with the shower chair, which has been a HUGE help to me) it’s a long ass time being vertical, under hot water (cold = PAIN) which makes you drowsy, and it’s a LOT OF WORK. Washing my hair is a LOT of work, arms over my head and pushing, pushing. Washing my body is a LOT of work, pushing, pushing in awkward places. Then after I get out of the shower I have to get dressed (such a task, bending and pulling), dry my hair (holding my arms over my head again…) possibly put on makeup, and then go wherever I meant to go. Only now I never shower before leaving somewhere anymore — I’ve learned better. I only shower twice a week during my healthiest times. I’ve been down to twice or thrice a month in the past, during my worst times.
    So, showers are planned. I have Shower Days. I do NOTHING else that requires any physical effort those days. If I’m feeling well maybe I will, but I don’t plan on it, because chances are I won’t be feeling that well.
    And the pride. Pacing is key. It took me years to learn pacing. Which interlocks with spoon theory in pretty neat ways. It’s true, life is a daily battle plan. And I don’t mean that in the watered-down way it’s come to mean. I mean, you actually feel like you are micromanaging a WAR, a war against the world, fought with your body. Surveying your resources, plotting a path, assigning resources to different activities, counting your “spoons” and trying to account for when you might be able to count on have a few more and when (such as after my showers, when my legs are visibly shaking and I can’t stand anymore) you know you can’t count on having any, in fact have to -schedule- recharge time…
    And the pride is hard to get over, realizing I CAN’T DO THIS ANYMORE! I can’t live the life I used to! (The water is muddied here for me because I’ve had it my whole life — it was never “triggered” — so I never had the wild youth some people are at least able to look back on…) And you have to realize: I can’t do everything I want to be able to do anymore. I’ve given up on a BA myself — it’d take me 10-15 years and I’ve just decided it’s not worth my energy. Not that I don’t want to learn (oh how I miss my time in college) not that I don’t feel these things are incredibly important and useful, but I have to concentrate on things like making myself lunch. Washing my hair. Feeding my cats.
    And the depression thing! Ugh. I was once dismissed by a ob/gyn (male, of course) (he was filling in for my normal gyn, a true saint, who was sick that day) as having PMDD — primarily mood-related (and DEFINITELY a legit disorder, but not what I was complaining of in the LEAST!) — when I complained of severe, disabling (in the fetal position in bed all day) menstrual pain. Oh, I still want to slap that man.
    Wow. Thanks for linking back to this. And for listening to the rambling. ;)

  28. I don’t know I missed this previously, I thought I was a loyal reader here. Thanks for pointing it out to me.
    All I can say is How On Earth Do You Manage Motherhood On Top Of This? Mind boggling.

  29. bluemilk: mostly because I Don’t Have Much Choice. It’s much easier now that he’s older and more able to physically care for himself, plus of course his Dad and school and vac care do a lot.

  30. I just wandered onto this post from the interwebs. Your Spoon Theory is absolutely spot on. It describes what I haven’t been able to put into words properly myself. I’ve said to my Mister and others that I need to cut thus-and-such activity short because I’m running out of brain. Or I’m paying for the day before, so I won’t be able to do whatever we’d planned. But running out of spoons… rationing spoons… going into spoon deficit… Utterly brilliant and easy to explain.

  31. Sorry for posting twice. Just re-read (brain fog strikes again) your post and realized that the Spoon Theory wasn’t yours originally. I followed your link to the original page and gave it a read, and am grateful for having found it here.
    That said, as someone with CFS, I read so much that I relate to in your whole eloquent post. I also have secondary lymphedema as a result of a surgery 2 years ago, so several days a week I have to wrap my leg in 7 bandages and several other layers of foam or over/under wraps. If I’ve not planned ahead and pre-rolled my bandages, it can take more than a half hour just to get my leg wrapped.
    Then I put on my clothes, and not only is my CFS invisible, but now the bandages that keep my leg from swelling are hidden, too. But there are a lot of spoons used up just getting dressed. Faced with the long walk into the office to my desk from the nearest available parking area, some days it takes longer to drag my leg and fatigued self to my desk than it did to drive to the office in the first place. And I arrive at my desk exhausted and aching, to be greeted by a co-worker or boss (I have 2 bosses) asking, “Feeling any better today?”
    I’ve found that “hanging in there” is about the most honest reply I can muster that is suitable for the office. But some days I’m so tempted to just tell them that I’m NOT feeling better, and that I’m not going to be feeling better no matter how often they ask.
    And how maddening is it when people who mean well find out I have CFS, and try to be helpful by saying, “Oh, well so-and-so (insert famous person or person once known to them) had that, and with therapy they eventually got better. “

  32. very impressed with this post. I especially like the part about the difference between happy and healthy.
    (Not so keen on the term “little people” but as I don’t have any condition of restricted growth i am not really qualified to say if it is ok with them)

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