Survival Rules for Becoming Permanently Disabled

 

A good thing to do when you become disabled is to make some survival ground rules for yourself. They can be anything that works for YOU. The only key is that they must be totally achievable at least 95% of the time, and very realistic.

I was disabled in 1998 by four failed back surgeries causing nerve damage and constant pain, along with a neuromuscular disease called myasthenia gravis. Between those two things, I can never tell in what shape of strength or pain level I will get up with on a given day. I can never count on getting a full night’s sleep either. With the diagnosis of Antiphospholipid Antibody Syndrome (APS) after I had my DVT in 2001, it explained many of the symptoms we had previously attributed to the MG – double vision, etc. When you take all that combined with my short term memory problems from APS, any way you slice it I’m not predictable enough to work. I had a great career and I loved every minute of it (well, almost!) but that part of my life is OVER.

I went through the usual grieving process after I became disabled – I had to learn that the person I was before existed no more. I was still me, but in a changed body. One I didn’t like very much. I had to learn that I am who I AM, not what I DO. Once I got my head around that, I learned to appreciate a different way of life and find happiness in it despite a lot of bad times. There are a lot of tradeoffs, good for bad; for example, I am in constant pain but I have time now to do many things that I always wanted to and never had time for before.
A good thing to do when you become disabled is to make some survival ground rules for yourself. They can be anything that works for YOU. The only key is that they must be totally achievable at least 95% of the time, and very realistic.
The rules I made were:

1) I have to take a shower every day and dress;

2) I have to put on makeup;

3) No sitting watching TV during the daytime; and

4) I have to do a minimum of one “productive thing” every day.

Now, a lot of days obviously I accomplish a lot more than just one thing. Other days, it is pushing it to find something I can call a “productive thing!” If something big’s going on, I may have CNN on in the background all day. But just having the rules in the back of my head has kept me from just shutting down totally on many bad days and kept me from going into a “couch potato” routine.
In addition to the daily rules, I made myself some general guidelines. They are:

1) It is okay to invest in pets, crafts, hobbies, reading, music, any distraction that will keep my mind active and detract focus from pain.

2) It is good to give something back to the universe – sort of a “pay it forward” philosophy.

3) I must keep all doctor appointments and keep prescriptions current, etc.

My health is a priority.
Written by guest writer Sheila Talley

©2019butyoudontlooksick.com
  • Kathryn

    This article shows good sense. Thanks for sharing! I have autoimmune symptoms and will maybe come up some rules for myself in the future.

  • Stephanie Haskell

    Thank you this is inspiring!

  • suzanne

    I found this site and found it very positive. I have a routine. Although pain is constant some days worse then others. My plate is too full and my back has multiple very painful
    disabilities. I still paint with acrylics, plants flowers, listen to music and do the best I can
    to push forward. I know it is hard, it’s not going to walk away so hanging in there and keeping in a routine is the best for me. Love to all who are disabled, You are good, kind and compassionate always in your heart keep it their. sharing my love to all.
    suzanne

  • Razorwolfe01

    In the last few years my body has fallen apart and I am serching for guidance about how to go on long term disability and SS and still maintain health Insurance for the two years before I can get medicare.  I have Fibromyalgia, MMP (Mucus Membrane Pemphigoid) Osteoarthritis, Psoriatic Arthritis and I am Diabetic.  There is not a moment in any given day I am not in severe pain.  I have a standing perscription for Norco 10/325 and Tramadol monthly, not to mention a whole host of other meds.
    I am fast approaching the point where going to work every day is more than I can bear (I am 62)

    You seem knowledgeable about what to do after giving up on working, but do you have wisdom you can impart about the best way to stop working and be able to survive financial changes?  I know my doctors would take me off work if I asked them to.  I know I can get Temp disability and apply for SS disability, but I worry about being able to maintain health insurance.  I take too many drugs ( Embel for instance that costs $10,000 a month ) and medical doctor bills not to have health insurance for any amount of time.  They want to start me on a chemotherapy for my MMP that costs over $150,000 a year in addition to my Embrel. 

    Every night I am lucky to get 5 hrs sleep and often dream horrible pain dreams about being operated on with no anethesia or being attacked by someone with a knife.  I have to sit on the edge of the bed and convince myself that I can do another day.  I think I am running out of this time and need to know how to survive a transition into permant disability.  Can you offer advice?

  • Hi, I’m Sheila, the author of this article – I just stopped in to look at the article. Oh my goodness, I was so gratified to see the many wonderful comments! I just wanted to thank you for them, and I am so glad you found the article helpful!

  • HarleY

    Thank you so much for this article! It is so helpful to me that I plan to make my ground rules as soon as the brain fog clears enough for me to start seriously thinking about them and what they should be! This site is so wonderful! I just found it and this is the best article I have read yet! I was diagnosed with fibromyalgia and Raynaud’s syndrome but my symptoms far exceed those two things and so am currently searching for a diagnosis. My dad has myesthenia gravis too and sadly has suffered failed surgeries too before they figured out what was wrong and so my heart goes out to your situation. I am glad that at this point he is doing relatively well despite the difficulties. I am so sick that I cannot work lately. I have a job and a wonderful boss, but am on sick leave right now. I have to stay up all night tonight because I have an EEG this afternoon coming up to see if I have seizures and I have to be sleep deprived for that which concerns me because staying up like this will deplete me of almost
    a week’s worth of spoons all at once. It is so nice to find people who understand!
    My hubby is a cancer survivor and as you know chemo has after effects even years later and so we laughed at some of the sick humor section on this site or found it encouraging inspiring and depressing all at the same time, how much we can both relate to it all!
    Thank you all so much! I have felt isolated in a way since I have been so sick and so sincerely appreciate this virtual place!
    May Jesus bless you all!

  • Clair – nunnybear

    Fabulous rules. It’s so easy when you feel pain constantly and don’t get enough sleep to just lie down and give up. I still work full time and 25 miles from where I live. I have to work, a single mum with a mortgage and two useless knees amongst other things with Psoriatic Arthritis. Benefits just won’t pay the bills and even though I have changed jobs many times since I got sick, I have kept fighting. Even when I am not working I have to get up and shower, wash and blow dry my hair and do my make up. Only day I don’t do my face is on a Sunday if I don’t go anywhere. That’s the day I cook a proper lunch to make sure my daughter eats some veggies at least. I also do the ironing for the week. I do allow myself a sleep after lunch to recouperate but only if I have done everything I need to do. I don’t sleep well at nights, mainly because I can’t get up the stairs easily any more and my bathroom is downstairs so I stay on the sofa, have done for over 3 years now and I so miss my bed. Having just had a longer than usual break from work for Christmas I have to say that I have felt much much worse. Lazing around in the day meant less sleep at night and I don’t know how I got up at 5.50am today but I did and am looking forward to a decent ish sleep tonight as a result of doing a full day’s work and two hour long drives. I just want to say that I am really proud that I am able to work and I love the reaction I get from doctors etc who meet me for the first time. It gives me such a buzz to keep my independance and I’d recommend it to anybody who possibly can. When I wasn’t able to get out and about I got work from home and there are some genuine opportunities out there for people who want them. Yes there are days when I just want to go back to sleep and I have even fallen asleep at my desk. Strong painkillers don’t help. Discovering this website has also really inspired me. Just knowing that others are in the same boat helps and learning about spoons has also helped me to help my customers, other people with health issues who are looking to return to work. Thanks to everybody here for the great suggestions and support xxx

  • Wonderful message! Very timely and encouraging. I will retweet, repost and restatus!
    It is so powerful to feel as if we still have purpose and that we have much to offer, even with all of the labels (boo-hiss) of our multiple dx, meds, “Disabled” and such.
    It is what has happened, not who we are. Bless you all in your challenges, and in your victories.

  • Beth

    I have very similiar rules for myself. It would be very easy to just give up and stay in the pj’s all day. All that would do is make me more depresseed.
    Yes it bothers me that I have to give up so much from being what I call a SAHM(stay at home mom). I sleep when the kiddos are in school since I dont really sleep at night. A good day for me is to shower, put on my face and hair, make my bed and maybe do dishes.
    Depression is always lurking in the dark corner of every corner of my house. Its call is so tempting, but I have to resist as much as possible. I have enough on my plate I tell it. I only eat once a day, which is dinner. After I take my pills at the correct time, I really don’t have much room for lots of food. I feel like a beached whale. Thanks to the steriods, I look like I work in a junk food factory. There goes the dream of being a size six!
    When you are dealt a hand that has any chronic illness, you have to change nearly deverything in your life. The biggest thing for me is changing my thought process. You have to be positive at all times it seems.
    And for that next person that tells me that I dont look sick, I wish I had enough energy and strengh to beat them up and then ask them to go thru my day. Yes it’s wrong, but geez people. Just because you cannot see the pain, I feel the pain. The pain of feeling like a Mac truck is running over me and backing up just to make sure it got me!

  • Fran

    wow sheila you articulated my thoughts exactly.. however it is sometimes very hard to just get up and get breakfast…

    I am the same I have had three back surgeries two foot one knee and one stomach and was just dx with Chairi I so it is very hard to do anything, I had to start using a seat in the tub to just shower only because of the veritgo I would fall alot…

    Love your rules I will really start trying them..

    Much blessing

  • Fran

    wow sheila you articulated my thoughts exactly.. however it is sometimes very hard to just get up and get breakfast…

    I am the same I have had three back surgeries two foot one knee and one stomach and was just dx with Chairi I so it is very hard to do anything, I had to start using a seat in the tub to just shower only because of the veritgo I would fall alot…

    Love your rules I will really start trying them..

    Much blessing

  • this was good to read.

    I’m afraid I’ve fallen into despair. I don’t go anywhere or do anything. I don’t shower, get dressed or talk to anyone.

    I’ll try harder to do better. starting tomorrow.

  • Those same rules are my life.
    Shower
    Makeup
    Look Pretty
    try to do some housework- dishes, cat litter, etc
    spend time on animal welfare online work
    then hope i did not over do it

  • Karen Brauer

    I think a component to go along with this is that if you find yourself too ill to accomplish your daily goal, forgive yourself and try again tomorrow. Some days, my motto is: I am up and dressed, what more do you want? Another item I consider a daily requirement is laughter.

    I have dispensed with any self-care rituals that are not necessary to my health. I just don’t have the energy to spare. So I don’t do make up and have cut my hair short enough that it only needs washing but no conditioner or styling.

    I shower and put on clean clothes daily whenever possible. I exercise my mind by reading. I engage in mild exercise (water therapy, non-impact glider) when possible. These are goals that are not only usually achievable, they are good for my health too.

    Our goals probably vary depending on our priorities and our ailments, but it is good to have them.

  • Sandy Shoup

    I too have my “survival rules”. Mine are:

    1) Take my service dog for a walk – it’s good for both of us
    2) Practice piano at least 30 mins each day
    3) Do one hour of “chores”, whether financial or household
    4) Cook dinner for my husband

    I make sure to get my walk and piano practice first thing each day, before anything else happens to sap my energy. I give my self permission to have a nap during my “down time” between doses of pain medication in the afternoon. I keep lots of things I can do; read, play Nintendo DS, watch TV or browse the internet when I need to rest and be still. (Anything that occupies my mind helps in dealing with the chronic pain.)

    For me, the critical issue is scheduling. If I don’t get my important tasks done FIRST, I might not feel well enough to do them later.

  • Keena

    Great idea!!1 I just recently left my job due to my disability. I have not made survival rules, however that is a great thing. My trouble is I surf the interent a lot. I am just so tired. I hate to get up, but thanks for the push to do more.

  • Sandra

    I think that the best thing for someone on SS to do is VOLUNTEER. Volunteering may be the one thing that gets you out of the house on a regular basis, gives you something to look forward to and be appreciated for.

    I love these rules. I plan to print them out and post them on my refrigerator!

  • Trish Howard

    Sheila, this was AWESOME!!! I was also diagnosed in 2007 with APS after clotting during a mastectomy and later having two pulmonary embolisms (emboli?). I have multiple kinds of arthritis also, so I went on disability a couple of years ago after losing a VERY accomodating job.

    Your rules are really important. There are days I don’t shower, but I try to do at least something. I keep up with my Tae Kwon Do training (no sparring or board breaking) for the fitness of it, and I try to not feel bad if I skip a workout because I’m just not up to it. I just can’t QUIT. I am also REALLY into crafts, and I spend any extra money on supplies for quilting, painting, jewelry and the like. It keeps me thinking and doing something other than just sitting there.

    I have 9-year-old twin boys, one of which has Aspergers and ADHD. They have become my focus. We set rules, especially for this summer, of things we have to do – go to the pool at least twice a week, take them to their scouting events, take them to the dojo for Tae Kwon Do.

    It’s hard, especially when people look at how young and healthy-looking you are, to make others understand that sometimes you are top of the world and other days you are just trying to keep it from crushing you.

    Great article!

  • LOL Robert! And I have no probs with grungy guys either!

    I’m a true spoonie. If I use a spoon for one thing, it means I don’t have it for anything else.

    I worked with handicaps for decades before my body finally gave out. I’m at the stage now where I’m trying to figure out what I actually can do every day 95% of the time.

    Thank you for a very straightforward article. 🙂

  • Your rules aren’t the same ones as mine, but I have one of them — try to do something each day, anything, something that I feel good about and can look at as what I did that day. It may only be a three minute gesture sketch of my cat but I manage daily art.

    I don’t bother with your level of grooming, but I’m a guy. It doesn’t hurt my self esteem to get grungy or dirty or make me think less of myself. I’m not going to do it before doing anything that’d be messy, that’s a huge waste of energy.

    It’s rough when things most people do without thinking and treat as minor become major challenges. But having something more interesting than those day to day activities to do is worth a lot.

  • Wendy B.

    Great philosophy and one I also try to live by. When things get tough, I have a ditty to help get me going in the morning:

    “I washed the dishes and made my bed,
    THAT’S how I stared my day.
    And if I do nothing at all beyond THAT,
    At LEAST I still can say…[repeat]”

    Showering and makeup are biggies for me too.

  • Sean Sudol

    Interesting article. I am in the not-quite-unique situation of having my disability since infancy. Virtually everyone in my brain injury group had their incident as an adult, some as a teen. I guess that means at least some can look back to a “before” time that they will never have again, but one that never existed with me. I don’t know if I should be glad or not. But I am trying to take a more assertive approach – when possible – to my rights instead of people walking all over me, per se. My disability was supposedly totally hidden until recently – dizzy spells have forced me to use a cane for balance and I now make use of mobility scooters at shopping malls when I can. Getting up every day remains a challenge but I made it my job to get my daughter up and out to school each morning so until the end of June, I have a reason to get up. One productive thing a day… that is a major challenge as I don’t know if anything I do can be considered productive. But I try.

  • Thanks so much for this post! I have recently become permantly disabled due to Mitochondrial Myopathy and chronic asthma. Before my illness, I was a work-a-holic, and my job was my identity. You are right. I am the same person just in a changed body. I must admit that I have not been good at setting ground rules for myself. I guess I am still in the grieving process.

    Thanks for lighting a fire under me. This is just what I needed.

  • Love these “survival rules”, Having Lupus, Fibro, and Sjogren’s has changed my daily rountine in a big way. For me, I felt a great sense of lose when my job was gone and my career goals/dreams seemed to move to the back-burner. I do admit I miss dressing up and being productive, but I am working on finding a new definition of “myself”. Somedays this is easier than others. I remain hopeful that I can still make a difference just not in the way I started out. Great topic.

  • Lillian

    Sheila, I love your “survival rules”! I am not permanently disabled, but my FMS/CFS make living difficult often, and I, too, have pushed myself to follow a self-identified “rule-book” that is very similar to yours. I think that having general guidelines is helpful, too, because it helps you keep things in perspective. 🙂