Sunday, June 26, 2016

Forced retirement is no party

I understand that it looks like I'm having a good time. Sometimes I do. But the symptoms don't magically disappear when I make myself enjoy my life in spite of them. Plus, it would be great if I could be of more help, especially financially. In fact, every time I see a help wanted sign or hear of someone hiring in my field of experience, I seriously think about applying. Then I remember how unreliable I am now and just sigh....

I used to be an asset. Now, I'm a liability. That's a harsh reality to live with. A real slap in the face.

And then, there are those symptoms! Have you ever heard that saying about not wishing something on your worst enemy? Ya, it's like that. I wake up every morning, not knowing what to expect. Will it be a good day? Will it be the day from hell? Or will it be somewhere in between? And aside from that, I go to bed every night not knowing if I actually will wake up. Makes it pretty hard to sleep.

And yes, I do go to the beach sometimes. But my umbrella and my pain come with me. And I can't wear normal swimwear any more because I have overwhelmingly saggy skin and other body issues from constant weight fluctuations and steroids. I know. I do love myself. But this is not your typical aging body. It's much worse.

So, even if I was once a beautiful young thing, which I was and did not fully appreciate, and even if I stayed in shape my whole entire life, which, like most folks, I did not, I will never be a bathing beauty ever again. It's not a self image thing. It's just the cold, hard truth. My whistle worthy days are gone and not returning. I'm now in the “hushed tone whispering” or “blatant finger pointing and laughter from strangers” phase of my life. It sucks, you guys.

What's even worse? I can exercise my little tush off (except that I can't without being in bed for weeks) and... no dice. It ain't happening. I am not going to look better, no matter how active I get. Aside from major plastic surgery, which I cannot afford, the beach body has permanently left the building. And it's not just the beach body. The “ I can manage to look fairly decent in street clothes with a few adjustments” body is long gone too.

And now, back to the “Things I love that I can do because I now have time” category. Yes, I do garden. I will not give up the thing I love most. But break out that umbrella again for sure. Either that or garden before the sun comes up all the way or after it goes down or do a very, very little at a time or all three. Ya, all three is the norm. Plus, forget about in-ground planting. No way can I garden conventionally. No way.

And yes, I do go “hiking.” But I bring a walking stick as a requirement, not an option. And it hurts like holy hell too. And my “can do” mountain climbing is more limited each day. But I know that if I sit all day, this disease will get the better of me. Plus, I refuse to do so until I have no choice. Just like I refused to quit working until I had no choice.

Road trips are my favorite thing in this entire world. But now, my legs swell from sitting in the car and if I'm driving, my hands swell up too. And both ache like you wouldn't believe. In fact, sometimes after a road trip, or another fun activity, I literally cry myself to sleep from the pain. In my recliner because, acid reflux, while I have managed to control the number of episodes, loves road trips! It just has to join me for every single one. Plus, if I know that I'm going to be doing something like that, I have to take extra prednisone for the inflammation. Of course, then, I'm even more nauseated, a bit grumpy and possibly a royal pain to do anything with. Ironic, yes? But this is my life as a forced retiree.

BTW, much love to my peeps for putting up with me.

And that's something else. It really sucks, seeing other people suffer or be limited because I'm sick. And maybe this is a lame example, but my one and only absolutely loves driving up Mount Evans. It's his favorite place to go. I have a fear of heights, but normally, that doesn't stop me. I just do it, enjoy the view and celebrate arriving at the top (and the bottom, whew!” But with Lupus, dizzying heights make me sick, sick, sick. So, even if I could once soldier through, albeit with trepidation, I just can't do it any more. And I'm stubborn. So sometimes I do it anyway. Do now, pay now and/or later.

Do you know what it's like, not being able to do the thing that the person you love, loves most? I know those of you with chronic illness do. It's not a small disappointment. Plus, it's hard on the relationship. And limiting. So limiting! But you compromise. And sometimes, as I said, you do it anyway because you love them. You know you will pay that aforementioned price. That's a given, not a maybe. But hey, they're worth it.

And then, there's that whole “can't” thing. I'm a natural, can do person. I'm a survivor and a thriver. Can't never used to be a part of my vocabulary. Now, it's a given. There are some things I just can't do. Work is one of them. It's horrible to have my choices taken away like that. It makes me feel like a 90 year old. And some days, I have about the same mobility and dexterity.

I also fall asleep at random moments. Now, maybe that sounds good to some of you. But it's highly inconvenient. Even though I stay home, I still have a lot of responsibilities. In fact, all the things that the working people have no time for fall squarely in my lap. Ya, the lap of someone who has days where taking just one step hurts. It's a great place for them to land, right? NOT!

BTW, the reason for those forced naps is that constant fatigue and brain fog are the norm for those with chronic illness. And then, there's the whole “up all night/worshiping the porcelain god or wishing you could” thing. It's not exactly conducive to a good night's sleep. Imagine having the flu 50% of the time. That's about how it is for me. For some people with chronic illness, the percentage is even higher.

I am actually very lucky. Yes, that's right, I said that I'm lucky. Because Lupus has also been the catalyst for much maturation and learning. I even write about it sometimes in my Lupus Love blog. And aside from the fact that most people feel much better than I do, there are a lot of people who feel much worse. Plus, I am surrounded by friends and family who totally get it.

Still, forced retirement is no party, my friends. Don't be so quick to envy people with chronic illness who “get to” stay home all day.

Because with chronic illness, retirement is not about “get to.” It's all about “have to.” Just like your job, but with a lot of pain, vomiting, dizziness, fatigue and a million other symptoms nobody wants to have thrown at you throughout the day.

And ya, this is negative, but you know what? It's my party and I'll cry if I want to because it hurts! Especially when people talk about it like it's a vacation.


  1. You're not a liability at all. You do a lot for everyone and we appreciate it :)

  2. You're not a liability at all. You do a lot for everyone and we appreciate it :)