Feeling Crippled

Today’s been a rough day.

I needed to get into town to pick up the iron supplements my gastroenterologist prescribed last week.  I thought I was feeling well enough to do it.  Because it’s summer, the bus that goes past my street only runs every 2 hours, so I thought I’d try riding my bike into town.  It’s only two miles, mostly flat, so I didn’t think it would be a big deal.

Yeah, I was wrong.

By halfway there, I felt like I might die right there on the road, but it was a busy street with nowhere safe to pull off and rest, so I made myself keep going.  Then, as I was riding into the center of downtown, I started to have an asthma attack.  My leg muscles just quit working, and my bike and I fell over in the middle of an intersection.  It took me more than a minute just to be able to get up, and somebody had to help me get my bike up and onto the sidewalk.  Luckily I was wearing pretty thick jeans, so I didn’t tear up my leg except for part of my ankle, but my knee and the side of my leg are pretty bruised up.

I feel so useless.  A year and a half ago, I was walking/running around 5 miles a day, and I was doing intense martial arts training three nights a week.  I was strong and in good shape, and I knew my body could do pretty much whatever I wanted it to.  I had the arthritis and pain in my lower back and hip to deal with, but it didn’t limit me much.  Now I can barely do anything more demanding than sitting in bed.  Occasionally I can walk a little, but I have to use a cane, and it takes me days to recover afterward.

Right now, I feel like I can’t live like this anymore.  I feel completely cut off from everything I need, and I feel like I’m completely alone in dealing with this.  I mean, people try to be kind and helpful, but it usually doesn’t go beyond holding doors open for me and such.  Apparently I need a personal chauffeur so that I can do normal things like go to the pharmacy and buy groceries.

And there’s not even anyone I can talk to about all of this.  I don’t have friends anymore, not in real life.  I have friendly acquaintances on the campaigns, but we interact almost entirely around campaign stuff, not personal issues.  And I don’t think I’d tell them how hard things are anyway because I want them to see me as competent and capable, not crippled and deserving of pity.  But it’s so, so lonely and painful.  I feel like crying, but I’m fighting it because I think it would just make me feel worse.

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9 responses to “Feeling Crippled

  1. Seems you made it home somehow after your fall. How frightening but luckily you were not hurt even more. Bet you will feel stiff tomorrow. Of course that is a bet I would not mind being wrong about. Wishing you a good night and sound sleep.

    • Yes, I got home on the bus, just left my bike locked up downtown. (Going to pick it up today in C’s car.) It was fortunate that I wasn’t really hurt, but yes, I’m stiff and sore today. But I’ll survive.

  2. Dear Hope,

    I wish I knew how to help you. You need friends you can talk to honestly and feel good with, sick but also when not so sick. That is the ONLY way you can live. You know, even though I am much older than you, I do understand how you feel. Today I was trying just to affix a stupid pulley to the door frame so I could do a few physical therapy exercises for myself but I couldn’t even stand on my toes without my legs cramping and my arms hurting so much I couldn’t stand the pain. I gave up before I could get the pulley up. I am so afraid of the next few days when I will be all alone without a car or any transportation in a strange rural town and no one to help me…I wrote the start of a poem, then it transformed itself into this miserable piece of suicidal nonsense and self-pitying drivel that I would never show anyone….I know I am simply scared, of pain and of being alone, but there you have it. As Desiderata that poem I posted yesterday says, “Many fears are born of fatigue and loneliness…” and so it is. But those fears are nonetheless real in the moment, and sometimes they are real anyway…The thing to do is to parse them out piece by piece and see how you can handle them, not as a whole, just in little pieces.

    Maybe you cannot ride a bike. I can’t. I lost my sense of balance a long time ago to Lyme disease and never got it back. I also lost some reliable eyesight to chorioretinitis brought on by high dose Mellaril, which the stupid psychiatrists should never have prescribed years ago…How do you like that? So I can’t drive at night, and I have severe double vision when driving any distance at all. Plus with narcolepsy, I know all about needing a personal chauffeur and it is no joke. That is where friends come in. The thing you need, really need to know is that PEOPLE LIKE TO BE NEEDED. People feel good when they can help others. It isn’t just you who gets a sense of well-being when you are of service to others,. They would get a good feeling from helping you out too. Think about it.

    Yes, you have to take care not to wear any single person out, that is always true. But there are people you know, even casually, who would I am CERTAIN be honored to be asked for help, to be taken in your confidence be told how much trouble you really have and would help you out with gladness. You need to trust this and try it. Otherwise you will always be lonely and desperate…and will never know that people ARE out there and wanting to help you without feeling pity for you. WOuldn’t you want to help someone in your shoes? Would you feel pity for them? NO! Of course not. You would simply want to make life a bit less stressful for someone who is trying their damnedest and NOT feeling self-pity.

    Think about this. It is amazing what people do for others without feeling pity at all, and with just a sense of “Well, we are all in this together and today it is Hope’s turn to need a ride but tomorrow I might need something from Hope..”

    I am sending my best of best wishes, and hope that something good comes from this…Yours,

    Pam

    • Thanks. I did end up calling C, and she wasn’t upset, and she did help me stop freaking out so much.

      Sorry you’re dealing with physical limitations and lack of transportation too. I feel for you–it makes everyday life so much harder. I hope you’re able to figure out a way to get what you need in spite of all the difficulties.

  3. ((hugs)) I hope today brings a brighter day.

  4. wakingfire

    I think that at one point you followed our blog, but stopped because we write so infrequently. Maybe not? I don’t know, but I know we talked one, briefly, through comments. We can again, at greater length, if you like. I’ll listen. I have fibromyalgia and a host of other conditions, and I know what it is like to be unable to ride that bike, and to be less able that you were before, and to feel crippled. I had to apply for walker this week, and I am driven most everywhere, and it is so hard to accept that. Everyone deserves that ear, including you. – Xander

    • I’m still following! I just don’t always comment because a lot of the time I don’t feel like I have anything useful to say. (To anyone, not just you.)

      Thanks for the kindness and understanding. It means a lot. I don’t have anyone else in “real life” who gets what it’s like to live with a serious chronic illness, so it gets lonely–I’m sure you know what that’s like. It is hard to accept the limitations, especially since I used to be able to do so much. I just can’t get to the point of accepting that I’m probably never going to be able to all the things I could do 18 months ago. I can’t let go of my former self and abilities, and I kind of want to smack old me for taking it all for granted.

      • wakingfire

        I understand the wanting to smack myself. I look back on what I used to complain about in terms of pain and laugh now. I’m glad that you feel a bit better form what I’ve read today. No worry about commenting. I can never figure out the following system on this thing, and lurking is perfectly a-ok as far as I am concerned. Blogs are mostly for the blogger. I just didn’t want to seem like a drive by lookiloo making a weird offer! – X

      • Nah, I didn’t think it was weird. (Or not bad weird. I like weird in most cases.)

        I don’t know if there’s a way to see a list of who’s following your blog. There must be, but I’ve never found it. I know how to get a list of which blogs I’m following, though. It’s not as intuitive to navigate as I’d like.

        I think my blog is for me, but I do value interactions. If it was just about my writing, I’d just keep a journal. But I like the feedback and conversations, you know?

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