I Wish I Could – But I Won’t Let Myself

I have had an extremely long day. I barely ate lunch and then worked through what should have been dinner. And now I’m tired and cranky and hungry and there’s not really any food in the house because I’ve been busy and tired all week and so haven’t made it to the store.

It would be amazing to order some food. But I have a major block and cannot, do not, order food for delivery. To me, it feels so indulgent and spoiled and a waste of good money that I just cannot let myself do it. This is a completely irrational block – I do plenty of things that are more expensive and do me less good. (For example, my new laptop didn’t need to be so shiny and zippy – and I’m not sure I really needed one at all.)

Instead, I ate two bowls of cereal and a big handful of chopped walnuts. Meh.

Is there any kind of help or accommodation or similar that you just can’t let yourself accept?

26 Comments

  1. I put off getting a gripping/pickup-stick for so long but wow I’m glad that I have it now! It’s hugely reduced the morning dizziness that can send me off into an all day spiral (lol) of dizziness.

  2. Half my life is fighting against accepting the need for accommodations, it’s a really bad habit I need to get out of, because it’s so harmful.

  3. Have my shopping delivered. This is largely because my conscience wants me to buy from small, local, independent shops which don’t do deliveries, but i’s also partly a money thing.

  4. I have a problem with making myself take the stairs instead of the elevator, even if I know I’m going to emerge from that stair-hike with more severe pain.

  5. Various special watches or a phone that can run some sort of text-to-speech or pictogram-to-speech app. I tell myself it’s too much to spend in one go, but then I’m not saving up (or trying to anyway) either, and I do spend other fairly large amounts (that could have amounted to a phone or special watch) on books.

    I don’t really get it either, I’ve never had an issue accepting any other accommodation.

  6. I have a neurological illness that affect my legs and hands. It is now to painful to use the joystick on my power chair. I now have a head array on my wheel chair. I move my head, side to side on the head array to move the wheel chair. It is slow getting use to it. I need to practice more. It is scary. Thank you for letting me say this to others who understand. I am so glad I found this site.

  7. Getting a wheelchair was first suggested when I was fifteen years old. I finally asked to be referred to NHS wheelchair services in August this year; the chair was delivered in September. I am now twenty-three!

    (This isn’t as bad as it sounds, because for two years, while I was at university, I had a mobility scooter on long-term loan, plus we have a very very ancient & heavy transport chair, once used by my grandmother, and we’d used that for discrete occasions of particular need. But even so. That was one accommodation/aid that took me Quite A While to accept…)

  8. All throughout high school, I refused extra time on tests, even on the SAT and APs, when it would have been nice. I also managed to handwrite the APs, though my handwriting is terrible. I just printed and wrote less and dealt with the hand pain. I did OK, but looking back, it would have been really nice to have had that extra time.

  9. I battle against buying takeaway, or prepared foods – even though that’s what one of my benefits is specifically for. Thanks to my mother I have the “Chopped [whatever is for lazy people” and “Pre-grated cheese? How idle can you get” mindset.

    I also fight needing more than 8 hours of sleep. and try to force myself to stay awake.

    Luckily my gf is a good external voice. “You couldn’t sleep that long if you didn’t need it” and “Is buying pre-mashed potato hurting anyone? NO!”. I love her for that.

  10. @chally – it took my years to even allow myself to identify as ‘disabled’, due to internalised ableism given to me by my parents, and a fear of being seen as even more ‘different’. I’m sad when I look back at my childhood and realise that certain ‘bad’ behavioural traits were actually disabilities, and that the ‘easy way out’ of situations is not a bad thing, if the ‘hard way’ is impossible.

    My current battle is, once I get my benefits reinstated (council stopped my housing allowance over a mistake they made but won’t acknowledge) should I pay for someone to come in and vacuum and wash the dishes? That’s going to be the hardest thing to give in to. My partner says “We don’t need someone to do that, I can do it” but she’s disabled and working full time, just got denied a benefit that would help her drop her hours, and actually – can’t do it because she’s wiped out.

    I’m going to fight this one though, because things get out of control too easily, we get stressed about the mess, and lose any motivation/energy we had by constantly playing catch-up.

  11. @fromutopie – me too! In fact, I was too ‘ashamed’ to be asked to be referred to my local NHS WCS, so I bought a chair online. It’s changed my life completely, because the simple act of going outside is no longer something that can exhaust me for a week.

    Also, it makes people act very differently, as if it reminds them that I am actually disabled. Apparently the tears, frustration, suicide attempts and days of near-comatose sleep induced by going to the shops were not enough to ‘prove’ I was ill. It seems that distraught and in invisible pain = not a crip, but able to move about on wheels = a ‘really real’ disabled person. I hate the fact that people are like that.

  12. @paraxeni I also considered buying a chair! Actually my parents offered to pay, but I felt bad about taking their money for it – especially because anything other than a (hideously expensive) titanium one is really not suitable for the long-term (i.e. when I’m stronger and able to live independendtly again, I’ll also need to be able to push myself), so I didn’t want them to buy an unsuitable chair, in particular. And there was no way I’d have accepted the money for a titanium one. (The one I got from the NHS is supposedly lighter than ‘normal’ lightweight chairs, but still much too heavy for me.)

    I completely agree that people’s attitudes change – I’ve found it to be swings and roundabouts, really. It’s nice to be taken more seriously, but on the other hand, before I ‘passed’ really well if I wanted (especially being quite privileged in other ways: young, white, thin, etc), whereas with mobility aids I’ve had *far* more experiences of being talked down to, and so forth. A few weeks ago it was the classic ‘giving my change to the chair-pusher’ thing, in a shop. Still, that’s not to say I’m anything but hugely happy to have the chair – I’m still about 95% housebound, actually, but when we *do* go out, I’m able to be out so much longer for the same amount of energy. We’ve done a couple of trips which would be unthinkable without a chair.

    Recently I’ve heard (anecdotal) stories about some really stringent limits being placed on wheelchair services, with people saying that in some parts of the country it’s impossible to get a chair unless one is completely unable to walk, or at minimum 100% housebound. After fretting about whether I should consider a chair for so many years, I now feel like I was actually really lucky to be able to have one at all, especially reasonably quickly (by NHS standards). But I tend to have these really *mixed-up* feelings about all sorts of accommodations – an odd mixture of gratitude, relief, resentment (especially with things that have been hard to arrange), and anxiety about how other people see them.

  13. After a seizure I’m really unstable with the whole walking thing, especially on stairs or slants. Do I want to let anyone help me not crash? Of course not. Do I need it? Most likely.

    And no, I probably don’t WANT someone to help explain what I’m trying to say when I’m anxious-usually asking for accomodations. Do I need it? Sometimes, but getting me to admit that is nearly impossible. Strong independent streak? Psh never.

  14. I think my issue with asking about a chair referral, is that despite some HUGE mental advances in the last two years, I *still* have this “I am lazy, that is why I am fat, I should be forced to walk it off” mentality. I was brought up by a mother with an ED, and until 2 years ago (at age 30) I honestly believed that my broken brain, loss of mobility and damaged vision were nothing, mere trifles, compared to the ‘horror’ of being fat.

    If I add to that a series of run-ins with doctors who saw the fat before the person, and who think that as someone mostly bedbound I should either stick to sub-500 calories, or get a gym subscription (hahahah) as ‘inactivity breeds inactivity’, well… I have issues speaking about my weight to doctors. I fainted on the stairs once, and really hurt my knee on the way down. After a while my knee started to make a disgusting noise whenever I moved, and the GP I had access to at the time said “Your knee’s fine, it’s your fat legs rubbing together. That’s causing the noise.”. So, I know have permanent knee pain, with a knee that makes noise even when I’m naked.

    I recently got lucky, and the latest GP that’s been assigned to our sole rural practice has not only been helpful, has actually *listened* to me and has already helped me greatly, but he has never mentioned my weight. Not once. In fact, I mentioned something about my main secondary condition, and he said “I don’t know how you could live like that, or why anyone has let you. It is deeply unfair.”

    So maybe, just maybe he’ll be able to get me a referral, and I can ditch my fifty-quid jalopy chair that I bought to ‘check out’ wheeled-life, (but is woefully shoddy) and trade up to some real wheels!

    Oh and the one time someone addressed my gf the chairpusher, she growled at them. I love her!

  15. Paraxeni, I’m so sorry about the rotten doctors you’ve had. How infuriating and sad that they can’t get past their own fatphobia to recognise your needs. I’m really glad you’ve got someone better now, and best of luck if you do decide to go ahead with wheelchair services. Your gf sounds absolutely awesome.

    (Very tangentially, I was turned down for DLA last week, and apparently have *no* mobility problems! I would love to know why they think I have that chair, then… Because naturally all PWD spend their time sorting out mobility aids for which they have no need.)

  16. I will not let people help me up and down the stairs, even if it means I have to scoot up and down them. For awhile I refused wheelchairs completely and utterly, and right now I go back and forth a lot. My mother bought me a fairly cheap one, which means I feel far more obligated to use it, but many days I don’t use it when it would be wonderfully helpful. I actually once got on one of the electric scooters that they had in walmart to move it for someone who was leaving, and then *put it back* before I did my shopping. -_-

  17. Grocery shopping at the bigger supermarkets will always leave me wiped out and in a lot of pain, but I just cannot bring myself to use the motorized carts, either. The supermarket near me has a Natural Foods aisle that has the “natural” and organic versions of all the different supermarket things, and since I’m vegan, that’s where I usually buy most of my packaged stuff anyway, but on days when I’m already in a lot of pain, I’ll just shop that aisle, rather than going through the whole supermarket for better prices on a lot of things in other aisles, because shopping one aisle plus produce is within what I can do with a regular cart.

  18. I’ve finally gotten over the mental hump for the disabled pass for my car (only took 15 yrs), pre-chopped food (my mom’s voice is there too… she would NEVER think of purchasing something more expensive that could be chopped, sliced , shredded by hand).

    I’m still stuck on never using the electric cart for shopping, partially because of my anxiety about how to use it (not steer it, but I do not know if the key is in it or what) and being looked at getting in and out of it, seeing someone who doesn’t know my invisible disability and wondering what the heck I’m doing. So I park in the disabled spot but then waste my energy some days on walking the length of the store of a huge store like Target to get whatever I need in the back.

  19. Oh fromutopie – my gf was denied last week too. I don’t think anyone’s likely to get an approval for a while, thanks to our new ‘great’ leader *cough* Also, they fact that you have a chair now? They often use that against you in assessing your claim. An online acquaintance of mine was ex-SAS who’d been injured in active service. He could move two fingers, his head and neck.

    His forces friends raised money to get him a powerchair with finger and head controls, and so the DWP cut his DLA. Why? He could move independently again! My (low rate care and low rate mobility) was recently renewed, but I’d actually put on the renewal form that my condition had worsened dramatically since I applied. They still re-awarded mobility at the lower rate claiming it was based on my ‘application’ (it was a renewal), as my circumstances hadn’t changed! Scared to appeal in case I lose the lot, but I need a blue badge and my local authority will only grant them to high-rate mobility and ‘wheelchair users’, because apparently chair=high rate. They say as I don’t get HR that I must not really need a chair at all. Nnngh.

  20. This one is a toughie for me to answer. I can’t be sure what help I resist because I just feel like it’s wrong/unnecessary somehow or what help I never ask for or resist because of my disabilities themselves. Do I, as a rule, refuse help cleaning because I feel that help is a violation of my space or do I do that because if I did otherwise it would be changing my script which would leave me on edge, making every question cause for panic? Do I not call for help in choosing dinner because calling for that help would feel wrong or simply because it doesn’t occur to me? I think a lot of times I don’t accept things one would think would be helpful is because the help would, somehow, be more trouble than it’s worth. But I could be deceiving myself: I’ve came to different conclusions before and I’ve no way to know which one is true. Maybe there are elements of both.

  21. Nope! I let myself do whatever I think I need and can reasonably afford. I didn’t always, but it was something I learned to do over time.

  22. Call in sick to work.

    I’m a teacher, and I always use excuses: It’s more work to write lesson plans for a substitute than it is just to be there myself; we’re in the middle of something that a sub *can’t* do with my kids as well; me + pain is still better for my students’ learning than is a stranger in the classroom. And even if those are true (I’m saying *if*), they’re not the real reason.

    Really, I don’t want to be *that* person, who takes regular time off for cyclic pain. There’s a few ableist (mis)perceptions I’ve come across in this respect: 1) that people with chronic pain “should” be able to manage it in a way that lets them do everything people without pain do, and anything else means those folks are inept at handling their own health; 2) that if it’s not ineptitude, it’s weakness; it’s “just” pain, after all; 3) that people who take regular time off citing “pain” are really just faking it, anyway.

    Even though there are plenty of people who would understand and support me, there are also folks who would choose not to understand and would resent it.

  23. There are a good few things I need to start doing, really. I’ve let myself start using the ground-floor disabled loo rather than the upstairs ‘normal’, and to use lifts rather than stairs if it’s more than one flight, but:

    I always go to the shops rather than online ordering – and as I need to use more than one supermarket (Tescos, Morrisons and Co-op do different things well as far as free-from go), only one of which is really within walking distance from my house. If I move partway through this year closer to the city centre, that’ll go up to two, but, still. I’m probably paying more for busses than I would for delivery. And I wouldn’t be ‘making do’ avoiding tins, frozen food, and a lot of veggies. And as I can only carry a backpack and one hand (the other holding my walking stick), I need to take more trips when I do it this way – and often miscalculate and have to carry lots of heavy in any case.

    Buying more ‘easy’ food, esp carbs. I can easily chop an onion, fry it, and add more stuff to fry. Peeling and chopping three or four potatoes in addition, not so easy. Making a clove of garlic to be small bits – more difficulty. The more difficult bits are required to make there be food, the more likely I am to just Not Eat. Which makes me less well, obvs.

    There’s probably some more stuff which hasn’t even occurred to me yet.

  24. I need to start allowing my friends to help me with housework. They’re my friends, they want to help. I could use the help, I really could. But at the same time I just can’t shake the feeling that if I just applied myself more, if I really worked through it I could still accomplish it by myself (and that this is somehow better).

    … and that’s why I live in a pig sty.

  25. Oh yeah, and I need to start not feeling ashamed of asking to sit down and rest often when I’m on my feet. Also, I need to stop feeling ashamed of carrying a cane that I “don’t really need anyway.” Because when I only carry it on days where I’m really fragile people seem really skeptical about me and ask a lot of questions trying to get me to legitimize using a freaking stick! Oh yeah, and those are days where I’m feeling especially fragile, that doesn’t mean that I actually need the cane to walk it just means that at least one joint feels like it’s likely going to give out in which case I’m very much going to need to use the cane to get around so if I’m walking around campus just carrying a cane stop looking at me like I want to beat you with it!

    I also need to stop feeling ashamed about pressuring my doctor into giving me a better answer than “your posture is bad” or “try loosing weight” when I bring up my joint pain. And I need to start feeling like I have a right to do so, too because I keep telling myself that it’s really not a big issue because I’m “not in that much pain” and that my joints are just “fragile” or “wobbly” and if I were “really disabled” it would hurt more more consistently.

  26. Oh man, so much. The top things that come to mind right now are transcripts and TTY.

    I have a lot of trouble watching video and listening to recorded speech, so generally if there’s a transcript available I’ll read that instead of the video/podcast/etc. and if there isn’t one I’ll skip that post. However, because my video issues are very hard to pin down but are “just” sensory issues and auditory processing and because I can occasionally (very rarely) manage to force myself through a bit of video I have a really, really hard time asking for transcripts. There’s a podcast I really want to “listen to” at the moment, about women who stutter, and I’ve been meaning to toddle over to the transcripts community on DW for ages and ask them if they won’t do at least one or two episodes, but my brain goes “but you could if you really really forced yourself how dare you ask someone to put in that amount of work for you that kind of thing isn’t meant for people like you.” I really can’t make myself do it.

    Something similar’s going on with TTY – I have a really hard time with telephone conversations most of the time and have considered trying out TTY for ages, but next to the block of trying out something totally unfamiliar in what’s for me a stressful situation I also have the block of “but that’s meant for d/Deaf people, not *me*.” Despite the fact that I get into regular trouble due to avoiding phone conversations (my credit card was once nonworking for two years because I couldn’t make myself call to ask what was going on and they ignored my letters.)

    I’ve generally got quite a bit better at allowing myself accommodations but I think particularly for sensory issues it’s still something I struggle with.