Life at Home is not all Eating bon-bons and watching Netflix

Life at Home is not all Eating bon-bons and watching Netflix

By Liza Zoellick.

Not too long ago I wrote about reclaiming your independence, but there is a flip-side to this which is everyone else’s perception. Normally, I am the sort that doesn’t dwell much on people’s perceptions; however, when your appearance gives the mistaken perception you are healthy, people can be truly confused why you don’t work or participate in life more. This then leads to the idea that you are living some posh existence, eating truffles while lounging around in your pj’s all day long and watching Netflix. I know I am not the only one who has been told by a friend or acquaintance, “Oh, how lucky you are you can stay home all day.” Some of my other favorites include, “Man, if I could stay home all day I’d catch up on my favorite shows.” Or “You should pick up a hobby! Or take a language!” Let me dispel a few myths right off the bat.

·         I have buckets of time: No, I go to the doctor a lot. Not just one but a few. So many, in fact, that my dear husband can’t keep track of their names or specialties. Those days where I don’t have to go to the doctor or get bloodwork done are precious to me.

·         The whole bon-bon thing: Eating food is like Russian Roulette for me. I never know what is going to spell catastrophe so no, there isn’t any binge eating of truffles, bon-bons or any other food. Not if I want to function.

·         Binge-watching shows: Netflix and I are insomnia friends. I do watch some shows with the family, but if I start binge-watching shows it’s because it’s 3am and I can’t sleep because I am in pain.

·        I must languish from boredom: I have good days and I have bad days. Most of the time I am pretty focused on keeping myself comfortable (pain wise) so I can function on some semblance of normalcy. There isn’t time to pick up a hobby, and besides, writing is my hobby, which I do a lot of.

·         You are so lucky to stay home: I will grant you that staying home has its benefits. When I sit down to work on my blog or another article, I can do it from the comfort of my bed where I can have the heated blanket on (yes, even in the summer) all the pillows I need and take as many breaks as I need to. But contrary to popular thought, this isn’t some eternal vacation for me. I do have a life with all the unpredictability and all the responsibility.

·         You have so much time to do things: In actuality no. If I am not trotting off to see the doctor because I have to, much of the time I am dealing with my illness and all the symptoms that accompany it. A lot of the time I am battling pain. So, for the most part, I get the bare bones of things done and then need help.

There are many things I miss about having a job that I don’t think people realize. I also think that there is a certain amount of jealousy that goes into this misconception and I hope to dispel that too. Here are some things I miss about having a job and a few things people may not realize a family goes through when there is only one person working.

·         I miss the money: Having my own paycheck was important to me. It allowed me to buy things I wanted and also contribute to the household. Not bringing a paycheck leaves me feeling guilty, wishing I could do more and sometimes leaves me feeling angry. We can’t always do the things we want to do and you have to prioritize when things break down.

·         Just because I stay home doesn’t mean we’re financially able. There is a misconception that you must be doing well or you’d still be working. The sad reality for many of us is that it was a tough choice staying home and one that was made with full awareness of how things were going end up. Sometimes, that can be pretty desperate. I am waiting for a hearing date for disability. It could take a year just for the hearing date and there is no guarantee I will be awarded the disability. But in the meantime, I can’t work. In my state I have to be a year without employment because of whatever is causing my disability.

·         Trust me on this, don’t be jealous. There is a lot of stress that comes with staying home unless you are one of the lucky few who can manage your household with only one paycheck. And even if you are financially sound, there is still the very reason you are home, your health, that becomes very stressful. Many of us live with the unpredictability of our illness, which means that plans are never set in stone and we cancel a lot.

·         I miss the social aspect of work. This is actually an ironic one because I struggle with social anxiety, but work helped me deal with that. I find it more difficult to get out with each passing day because I don’t have to. So many stores are going to delivery or even in-store pick-up that I don’t have to socialize or do it for very long if I don’t want to. And though it makes things easier for the disability aspect of my life, it makes things harder on me socially.

So, remember these few things before you think it’s great that someone gets to stay home. It’s not always as glamorous as it seems to be.

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Authored by: Liza Zoellick

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Julie

This is a wonderfully written and descriptive article concerning the myths and misunderstandings that occur when you are a chronic pain patient. Some of my closest (I thought) friends constantly told me that they wished that they could just stay home like me, how freeing it would be not to have a job to go to, how much they could accomplish, and the vacations that they would/could take. Regardless of how often or vehemently I explained that I would PAY to be able to work, everyone seemed to think that I am lucky.
I send Blessings and Love to all of my compatriots who fight just to get up in the morning.

EvilAunt

I agree dragonfly, pointed out to the receptionist at the doctor’s office that if I were a dog I could be put down humanely. Instead a substitute doctor took away my pain meds AND have orders for me to drive and hour plus each way for pain management, two plus hours there, doesn’t prescribe. Set up for failure. Now enjoying the withdrawal symptoms. What a load.
Sincerely hope everyone has a better day. God help us.

Jodi

This is very well written and so very true. I am still feeling guilty because my husband kinda got stuck with everything on his lap and now he is having anxiety attacks. Our girls are getting older and I really wish/financially need to go back to work. College is so expensive (even with good scholarships). I think I am becoming more isolated and socially awkward because I don’t go anywhere like I used to. It’s a chore to just take a shower. If I do go anywhere I spend at least a couple days regretting it because of pain. I still haven’t found my new norm, and I probably should go to see a therapist because I do still find myself angry, especially at the doctor who blew me off after the knee replacement and it turned out I had a bad infection. My physical therapist even tried telling him multiple times that my leg wasn’t right. It’s been right at 5 years now. I feel bad for all of us in this situation. If I had one wish, it would be to cure all of our pain (whatever anyone’s situation may be).

Caryn F

Thank you so much for this awesome post! I have encountered the same issues, however I am single, alone & just spent 6 mos in a homeless shelter when I used to make either close to or over $100,000/yr. My SS was denied so now my appeal for SS has been filed. SS did not review the last 2 years’ records & sent me for an independent medical evaluation by a doctor who does laser skin cancer removal & weight loss. He never heard of CRPS/RSD but he said I was fine! SS said they wanted a non-biased opinion; I was in & out of this guy’s office in under 10 minutes! We don’t chose our disability; I would give anything to be able to work rather than lying around the apartment (thank God I was put in a program where my rent is covered pending the outcome of my SS case) but I am staring @ the walls because I cannot afford tv or internet, if/when I do go somewhere (drs or grocery store), I have to come right back because I am exhausted, my pain is through the roof & I get confused & sometimes even lost. The only interaction I have with other people is with doctors, their staff & the grocery clerk. 3 of the 4 surgeries I need are not covered by the county health insurance program. I had these same surgeries a few years ago & was still in pain but at least I had some quality to my life. The only way I can get these surgeries is by getting my SS since I can no longer work. Who would want to live this way? Not me! Would you? Would you want to go from loving your job, excelling at it, helping your adult children, traveling and making $6-8/K per month to maybe $1,400/mo if I am lucky? Not me…I would rather have my life, health and self-respect back than be stuck & lost in bureaucratic red-tape, fighting with doctors, my loved ones and society in general.

Hi, Liza. Thanks so much for expressing how our lives are changed so much by our pain. And I know what it’s like to go through the years of the SS Disability application, because it took me over 4 years to finally get approved. One thing I did, and maybe you should try, is that once I got to the part where I was waiting for a hearing I contacted both my Congressman and Senator. They have people on their staff that handle this kind of thing, and my Senator was able to get the judge to review my case, and the judge made the decision to approve me without having to hold a hearing. So maybe try that and see if their staff can move your case along for you. Good luck!

Granny

Thanks for sharing some of the realities… I have long said that something must be personal for people to ‘get it’. I have had people say all sorts of cruel and rude things .. sometimes out of misplaced envy; other times out of misinformation.

It is disheartening and draining to have to keep explaining this disease (RSD), its symptoms, challenges and limitations .. especially on a rare day when i seem “normal”.

I totally agree with your comments about losing the ability to work. I never expected to to be struck with this disability so young. I had debt to deal with in addition to many bills to pay. I used to pop some clothes into a suitcase, grab my passport and travel the globe. I led and managed people all over the world .. coaching, mentoring, guiding and developing careers and lives… Now I am lucky to get out of bed, hobble downstairs and make coffee for my husband without falling down or dropping the cup. Ugggh… Debilitating pain is my new best friend and it is an ugly friend betraying indeed!

I have really struggled with accepting my ‘new normal’. Before RSD there was nothing I couldnt do .. truly … Home maintenance, great cook, multi-million dollar deals, horseback riding, soccer, bowling, tennis, rollerblading, hiking…caring for and playing with my grandbabies, … on and on and on. I rarely sat still and almost never watched TV. Now, it is an accomplishment to cook 1-2 meals per week… and I have to pay for all sorts of services I used to just do for myself.

Nothing prepares you for the isolation and all the time you are just alone with your own thoughts… I used to have many hobbies, but RSD has stolen many of them… still cant get used to coloring outside the lines (RSD comes with tremors and spasms that are unpredictable).

I am blessed with a husband who loves me very much… but saddened by the burden this disease causes each day…

One day at a time… one pain spike at a time… one long dark night at a time…!

Gerry

Like a lot of people I can relate too well. While waiting for disability I had the auction truck on my front lawn to sell my home. Yes I got approved and saved my house but if anyone thinks I wouldn’t have rather kept my job and kept my payments up they are insane. Another judgement I don’t like is the looks I get when I park in handicap spaces. I look okay on the outside but inside the pain is agonizing. I feel like people don’t see blood coming out of my ears so I must be taking advantage somehow. I’m sure you know it but I’m saying it anyway. Please know you’re not alone. Bless you.
Gerry

Wow…you saved me the effort of writing; ma carpal tunnel. Wish I could send a link to this to everyone in my entire area. I have times when I am able 2 walk w/o too much pain; people notice me b/c my dog is very very distinctive. They do not notice when we do not get out. So they all think we clock mikes & miles a day (in reality I’m limited to short distances). If i say anything about being disabled or having severe chronic problems, I’m lucky if get an eye roll. Some are hostile. Many/most say exactly the same things you mention. It is SO demoralizing & depressing.

Thanks for this excellent piece.

JoDawn

Liza,
((

Thank you! This is sooooo true!

Especially the guilt. 😢

Maureen M.

Hi Liza, as always…WELL WRITTEN! I love reading your posts of our dire reality. I always relate to them. I became disabled after 32 years of being a nurse… a career I thought I would keep at until I died, in some form or another. I loved nursing. The loss of giving of myself was tragic for me.
Then came the loss of friends and all the ‘head stuff’ that comes with not being able to socialize, to do the things I used to do to LIVE LIFE. I eventually had to go to therapy to help me reinvent myself and find purpose. That is still a tough road for me.
I have been on my pain and several surgeries journey alone.
I am divorced many years and so when ‘super mom’ couldn’t be all that she always was my only child (sadly) moved away…across the country in fact!
She loves me but just couldn’t deal with it. As close as we were then…I never ever imagined that she was do that!! My disabled life changed her too!
I can’t even tell you about the broken heart that came with that. And the heightened pain!
I’m not writing all this for pity’s sake.
I’m also hoping to let others know how tough it becomes when life tragically changes.
I remain very strong. I won’t let myself get depressed (if I do then one of my conditions worsens…FM/CFS) and so I keep pulling up my bootstraps and striving on…
but sometimes (like this past weekend) it becomes exhausting and I am very lonely in it all.
I feel embarrassed when my neighbors ask ‘are you okay? you haven’t left the house in a few days’. I look absolutely fine to them all. I don’t divulge to them all that I go through.
I deeply need my privacy with it. I also want to seem like a ‘normal’ person in some area of my life, to some people. I have no one to lean on but myself and God.
And so, I just can’t lose all of me to the world!!
I wish you and all others to keep fighting to remain as strong as possible.
We have been given a difficult life but we can still find lessons and inner strengths in it all.

Vicki Lewis

You nailed so much of what I feel. I wish for both our sakes it weren’t true, but it is. Thank you for sharing.

I know exactly what your talking about. People think your on some kind
of vacation and don’t understand all that your going through.

Dragonfly

I cant shake the feeling of guilt. Do I cancel so they will have good time without me going or do i go so they want think i dont love them. Do i dare take that extra pain pill to get me through this event which will make me short on another day. What will I do to sleep tonight? Do I ask doc for something or will they get upset because they are managing my pain, and In thinking if I ask for sleep will I loose my pain management. This is so overwhelming at times. I saw a commercial.last night advertising a new pain product for dogs,and cats. People talking about how their animals quality of life has improved. How they are out of pain and they dont have to be put down due to their chronic pain. Dont get me wrong, I am a animal lover myself, but what about us humans. We want to be out if pain and have quality of life too.

Colleen Hendrzak

This is my story except I’m not a writer, and have never been able to articulate my ” new life, my new me ” before.

Yes, I’m thankful and abundantly grateful I’m still on this planet and have been able to see my 4 children grow into young adulthood. I pray I’m able to see their children and be a granny, and live a new type of fulfilling life.

Thank you Liza for sharing your story and letting me realize I’m not alone.