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Doing It Alone

PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
I'm 48 and have no family. I never married and I've moved around a bit as well as having been fairly isolative for the greater part of my adulthood. I have friends who I have made in the last 5 years of living in Philly but no one who I would ask to bring me to the hospital or to help me do the laundry.

I've been on disability since I was about 23 and definitely have not had a bunch of opportunities to save money. In the past I've gotten lucky and have been able to care for me but lately things keep happening. I have a service dog but he can't cook or fold the laundry! I'm definitely not feeling comfortable driving on all my pain meds.

I am starting to feel frantic that something is going to happen and I won't be able to take care of myself or my dog and cats. Right now I can do some artwork and help others out training their dogs but this is not work I'll be able to do if I have one misstep! There's no one to push my wheelchair although I've always been the one taking care of my own elderly neighbors. But I'm not elderly but I feel so fragile!

Is anybody else managing things on their own? Any words of support? I feel like I'm a dollar away from being shipped off to some living (dying) center and left to rot.

I know, not such a cheery subject but it's been on my mind.

Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)


  • Hi Sheila,

    I also live alone. I have a sister who does not live close to me and we have never been close either. I have a few close friends (I recently moved) and I do work. I have had a surgery every spring for the past 10 years and sometimes I ended up taking the bus to the hospital, especially for early morning surgeries so I don't have to ask anyone to take me. Its hard always asking people for help and I try not to. It can be very frustrating tho and some of it I bring on myself as I am stubborn and independent. I certainly don't have an answer for you but you are not alone. I also have cats (5).
    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • I hope you find a way to be not alone
    Sometimes its a level of comfort issue
    Sometimes its not wanting to be a burden

    You have folks here who genuinely care,maybe there will be someone in your area to talk to
    There are programs that provide a companion to help with the everyday chores,i hope there is one i n your area
    Be blessed
    William Garza
    Spine-Health Mod

    Welcome to Spine-Health

  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I have met some wonderful people who sent me private messages through this forum. I do have some great people around here, but, like everywhere, people are so busy! I'm busy trying to do things to make ends meet- disability covers very little. I write articles and do portraits which I enjoy but will never make me a millionaire!

    I have found that many people do want to be around me which, before getting the pain under control, I thought people wanted to avoid me. I had been in such horrible pain I just didn't feel comfortable around people. My patience tends to correlate directly with the amount of pain I'm in. And I get really frustrated with people telling me, "You're so lucky! How did you get to be on disability?" That phrase makes me want to breathe fire!

    There are so many dreams I still have but I feel will never come to fruition because of pain. My Pain Doc is great at encouraging my dreams and keeping my mood upbeat. I have a shrink who I have been working with for years for other issues who is, just now learning about Chronic Intractable Pain. I don't want or need sympathy but I need people to understand I don't want to feel like this nor do I have anything to gain from my condition. One of my friends, a doctor always jokes with me about trading my "magic beans" (MS-Contin pills) for pain free days- almost pain-free hours sometimes.

    And thanks to this forum for being here so I'm not alone with this scary stuff. I was told today that last months urine test came back positive for Hydromorphone. I've never been prescribed that and have never taken it but, in some people, morphine can metabolize as dilaudid. I had done so much research on this when I saw other people coming back with urine tests for things they never took. My doc never questioned it beyond requested a f/u test. (We definitely need an easier way to pee into a cup when we're in pain!)
    Thanks Guys

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • I feel the same as you all do. I had to use a walker for 6 mo. I broke a bone and I thought I would lose my mind, I hated using the scooters grocery shopping (besides the cart is not big enough!)

    I have a water leak and I cannot call the plumber until I clean up this house, I cannot clean or do what I need to do its always taking me so much time, more pain meds and it really has taken its toll on me, I was up all night cleaning the best I could not to mention the water leak clean up.

    The pain meds take my energy away

    I can't accept that I am not like I used to be. Huge Bummer :( Guess I'll just carry on best I can

    Now that I think of it I'm going to do a post regarding this
  • Hi LadyinPain. I'm so terribly sorry. Please, PLEASE just call a plumber! I know. I understand, I honestly do. If you could see the state of my formally beautiful home you would believe me! Chronic pain is so isolating. When we have a better day we have to jump on it & enjoy ourselves NOT do housework & hurt ourselves even more. I wish I could live what I say! I'm trying to. I REALLY am! Chronic pain effects every aspect of our lives. We need to change & adapt in so many ways.
    I was a very proud lady. To be honest as a teenager I wore outrageous clothes & dyed my hair bright red so I can't really have a problem with people looking at me!! Hahaha ;-)
    Can we just empower eachother? Stop caring if complete strangers in the pharmacy look at us like drug addicts? Use disabled parking cards with pride? Sweat with pain in the grocery store & not give a hoot what people think? We deal with so very much every moment of every day. Why torture ourselves more worrying what others think? I guess we're only human but it breaks my heart that you won't call a plumber....probably because I see my future self in your words!

    I'm so sorry. Please just call the plumber ;-)
    Osteoarthritis & DDD.
  • I'm living alone too. My life sort of stopped around 23 or so when I was just managing symptoms. I'm 30 now. I've been working but I haven't done much else. I've had brief periods of feeling OK, but I haven't felt good since I was 20 or so. I feel like a burden socially, and I just can't do a lot of things anymore. I'm fortunate that I have close family, but I feel like I'm causing them more trouble and sadness than anything else. It's very difficult. I try to find meaning in small things - there's an idea called philosophical Absurdism that helped me find focus a bit. "The Myth of Sysiphus" by Camus especially... but it's almost easier to read a synopsis. It's pretty boring :)
  • ThePlacesWeveBeen. I'm glad you've found some help with 'pushing your rock'! I have to admit that over the years I've lost nearly all of my 'normal' friends. It crept up on me as I cancelled more & more, couldn't do the things my friends were doing etc but social isolation is such a contributor to depression it frightens me. I've found more spiney friends who understand what we go through. I live in quite a new area. I was surprised how many people just in my little subdivision were going through spine problems, surgery etc. Can you drive? Offering to help others in a similar boat helped me to feel more useful & gave me a social life of sorts. I'm a little older than you & have kids so I know it's different but being an active part of the world really helped me to find my new spiney self...I'm still a work in progress, still pushing my boulder up that hill....
    Osteoarthritis & DDD.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I groaned when I was told "Take up a hobby!" in my 20's! Now I get so immersed in my drawings and other art work and it also gives me a connection to other artists. Art crosses boarders into the non-pained world too. I have things to talk about and people who appreciate what I can help them with.
    My other saving grace is my dog. No matter what he needs to go out daily and be walked. I meet others with dogs and we immediately have a common interest. And believe me, it's been a very long time since I was able to clean up all the trouble a puppy found himself in! Three years later I'm now catching up and appreciating that those dog walks have helped strengthen me to be able to clean up!
    Even if it's a walk around the block or a drive to a mall, don't isolate! Depression increases the pain and some of the pain meds cause depression! When you feel like all you can do is be a couch potato it's so much more important to move! Do the opposite of what depression suggests!

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • I was shocked when I first searched the subject of 'Chronic Pain Brain Changes'. Just living with pain causes physical changes in our brains! It's not just this life that makes us prone to depression & anxiety (& a whole host of other problems) I'm a big believer in researching the long term effects on our minds & bodies of living with pain & taking the meds we are prescribed. Forewarned is forearmed!!
    Chronic pain reduces gray matter in our brains but there are things we can do to possibly increase gray matter. That's why I started looking into meditation & visualization, learning new skills, studying, LAUGHING!
    I'm also taking steps to cleanse my liver, avoid dry mouth (mouth, teeth, gum problems), 'happy' & stimulate my brain, have my hormones checked, bloodwork at least once a year. I control my diet & take suppliments. Every little helps right?

    I'm a big believer in adopting pets anyway! There are little furry friends dieing to find a home. Caring for pets has been shown to be soooo good for us too. ;-)
    Osteoarthritis & DDD.
  • dilaurodilauro ConnecticutPosts: 9,842
    edited 07/09/2015 - 8:37 AM
    is very difficult, both physically and emotionally.

    Both problems there are not very easy to address. So many of us that have caretakers or other people who watch after us dont always realize how good we have it and at times take advantage of those helpers....

    But when its all you, its a complete different story.

    You need to find things that can fill some time void, take make you feel good and feel you have a real purpose. Something that will motivate you and help make you forgot about the pain for awhile.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • A social worker at the hospital may be able to help you. I also live alone with my dogs. I just had surgery on my lower back a week ago. My son took me to surgery then stayed for 2 days. then, I was on my own. The walker gave me a walker, which has been ver helpful; I would not have been able to get around without it! You might want to make sure you get a walker. It has been hard, but I am managing. Cook a lot of food before your surgery and freeze it. That will help. Hope this helps. Good luck and let us know how it goes.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I'm doing okay. Setting limits with the unneeded griping in my life- people asking me why I need to sleep so much! So can know but most, well I'd never advertise the medications I take which lull me into dreamland!

    But I was just thinking about healing and about moving on. No, the pain condition isn't going to heal but it's more about emotional healing. As a result of having been in near constant pain for 35 years or so I missed out on a lot of things people without pain get to do. (Oh and I've done many things that people with or without pain have not done too!)
    I'm just wondering about grieving. Grieving the life I had planned, the jobs I wanted, the changes I wanted to make. But I don't want it to be a downer. I never got to do a lot of the "normal things" but I definitely had opportunity to do things I never could have done had I had a family and a job.
    On one hand I want to curse pain and on the other I want to thank it. Anyone else notice the dichotomy?
    (Oh and for English Girl, yes I am fondly thinking about my opportunities with horses and dogs and how I have found so much joy there when I never would have found the opportunity if I were a regular person!- I'll never be normal!)

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
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