A new definition of being able
I’ve been struggling with asking for and accepting help with basic tasks for a while now. I’ve grown an unbelievable lot in the last few months but I’m definitely not there yet. I usually feel like I do not really need the assistance, that I’m just being lazy or that I’m attitudinizing. Because after all I am able to do all those things myself. I’m not paralyzed. I can put on my own pants, I do it all the time. I can dry myself off, I can make a transfer on my own. And still, in the morning when I have my daily shower, I let someone help me with my clothes, and I make use of a patient lift. I feel so stupid when I let them help me…
Last week I’ve had a change of staff, and that triggered a lot of resistance. Resulting in me playing tough and doing a lot more than I should, not asking for assistance where I used to. With every new staff member I have to explain why I need help, why I *can* make a transfer but still need a patient lift when I take a shower. Or why I can move just fine but can’t put on my own shirt without help. I always feel like I have to defend myself, like it’s an accusation. So last Thursday, when I had to explain it all over again, I told her that I *can* do all those things, but that I had to pay a price for it. And I showed her that my wrist was dislocated because of the transfer I just made. And then she said the most wonderful thing. She said: “but if your joints dislocate when you do something, that means you can’t do it right?” And she was so right…
I’ve been living with a definition of being able that implies no matter the cost. Of course I can do a lot if you don’t hold the damage it does into account. In my head, pain is never a good reason not to do something. Nor is a dislocated joint. And to some level, that is true. If I would stop doing everything that increased pain or accounted for luxations, I wouldn’t be able to do anything at all. Here it is, I wouldn’t be able. But right now, I damage my body doing things I don’t absolutely have to do. Of course I will always have to compromise my health to some extent, I do want to live a little, but I shouldn’t waste it on things like showering when there’s a good alternative. I have to alter my definition of being able and not being able to a mixture of the two extremes. There is no black and white here. And I should just accept that I am not able to do lots of stuff… That’s what being disabled is right?
June 06 2011 11:21 am | Reflections
June 8th, 2011 at 3:04 am
Thank you for this post. I need to accept that I need help. I need a stairlift, bath lift etc, wheelchair. The pain I am in at present is too much. Too much to bear anymore. What is it that I am fighting agaisnt, I don’t know. This post has made me think, I just worry and worry too much. Perhaps if I accept I need help, then I will stop worrying that my husband seems to be in denial that I need a wheelchair. He understands completely about the EDS and all the associated conditions. He sees my pain. But when I talk of help and wheelchairs he won’t discuss it. Perhaps if I accept, he will too? This post has really helped me. Perhaps if I stop fighting agaisnt my disability, I could find a little time and energy to have a go at life again. But to do that I must accept I need help. My brain isn’t working well enough right now to answer your question, too addled with pain despite strong pain medications. So perhaps I do need to accept that I am not able to do stuff, because the truth is I can but like you, it hurts me to do so. Having help won’t take my pain away enabling me to magically be better but it may give me a little space in my brain to think a little more clearly. Please keep blogging, reading of others experiences with EDS helps me. A year ago I thought I had come to terms with my disability. I was so very wrong. At nearly 47 I thought I knew all there was to know and understand about my EDS and here I am now, static, unable to speak to a doctor about how bad it all is. I read your post and realised I need to move on, I have done well to live with this chronic condition for so long without a wheelchair etc. but it is not a failure to need assistance its me needing to accept I need the help.
Thank you
June 9th, 2011 at 11:52 am
Hi,
Thank you for your lovely comments on my blog.
Your posts are very eloquant and I understand what you mean about asking for help. EDS robs us of so much.
Thank you.
June 9th, 2011 at 5:51 pm
I have set up a link from my blog page to yours. Hope thats ok ?
Rach xx
June 10th, 2011 at 3:32 am
I remember obsessing endlessly about this issue during my first rehab admission. I had slowly been slipping into being able to fewer ADL when I’d walked into a ladder ending up needing 2 skin grafts. 2 months in the hospital lead to rehab. Conservation of Energy versus independence & self determination butting up against service eligibility.
June 10th, 2011 at 2:23 pm
Hi. A friend showed me your blog today. My sister has been living with EDS for the last 14 years. It’s a constant struggle for her, and you’ve put it into words beautifully.
Thank you. I’m going to show her your blog, and I’m hoping she can draw some strength from sharing your experiences.
June 10th, 2011 at 5:17 pm
Wow. Yes. Thank you!!
June 10th, 2011 at 5:51 pm
@ Rachel: Of course! Thanks!
June 17th, 2011 at 12:00 pm
[...] long time resting to recover.When I talked about my concerns on twitter a friend sent me a link to this blog post which summarises the problem nicely. The writer has help at home with tasks like showering and [...]