Posted on by LydiaA1614

Invisible Illness – Pushing On Through

Having any invisible illness at all can be a “damned if you do, damned if you don’t” exercise. If you rest, nothing gets done and/or people think you are lazy. If you do something, anything (a chore, going out, shopping, etc.) people see you as healed or there was never anything wrong in the first place. I know that probably seems like an exaggeration; however, if you ever experience a condition that no one can see (or understand), you will soon get what I am talking about.

Some people have adopted the spoon theory. I haven’t really been able to grasp this one, though I see how it can work. It just doesn’t fit my mindset. Instead, I lean towards pacing which I learned in a chronic pain management program and something I like to call “pushing on through”.

Pacing means you set a goal and a reasonable time frame. For example, if my goal is to clean the kitchen, I set the boundaries such as putting food and other things away, emptying and filling the dishwasher, clearing and cleaning off the counters washing any hand wash only items. Then I determine how much time I can allot to the task. Sometimes I can do a half hour at a time, or maybe just the commercial breaks on a TV show I am watching, doing what I can in the breaks and resting while watching until the next commercials. Once I have the basics done, I decide if I can do more – sweep (and wash?) the floor, Tidy up the area where all mail and other items pile up, etc.

If I don’t set up the time frames, and just do it all until finished, I can wear myself out until I am in a ton of pain and exhausted beyond sleep or even rest. In other words, pushing through.

However, there are times when the pushing through technique is effective and often necessary. Last Friday we attended a service for Hubby’s uncle who passed away. I wanted and needed to be there. This family has become my family over the last 20 years and I was going for myself and even more for Hubby. I rested in the morning and then we headed out. I managed to sit on the hard pews and even stand during singing. I felt my blood sugar drop near the end, however, was able to eat at the reception following. I stood and visited with family members and finally alerted Hubby that I was getting tired and needed to go.

When I got home I was exhausted but happy that I was able to go. I came across, I am sure like nothing was wrong with me and that means it was a success. However, when I didn’t show up Sunday for a family birthday party with most of the same people, Hubby had to explain. Thankfully (you learn to appreciate the strangest things when you live with chronic illness) I was feeling bronchitis setting in and with my horrible immune system I couldn’t afford to go out. Hubby was able to say I had bronchitis, which everyone could accept, instead of that I was in pain and fatigued. And he was telling the (half) truth!

There are times then I just can’t push through something and unfortunately they are more common these days. I wanted to attend a training program to become a leader for another pain management program I attended. My problem on the morning it started was that I was having cold symptoms. Again, I couldn’t risk being in public in a weakened condition. I also have to depend on Hubby more and more for help with shopping. Thankfully one store has next day delivery no which helps a lot.

I would really love to hear other’s experiences with pacing and/or pushing through. I know they have become my reality. Are they yours?

Lydia!

 

37 Replies to “Invisible Illness – Pushing On Through”

  2. We can do a lot, if we pace ourselves enough. Sometimes we need to pay the price for doing this for the next days. In my last move, where a lot were needed to do, packing, painting, cleaning etc etc and I did also pace myself, otherwise not much would have been done for days. This resulted in that my blogging were on minimum, because my abundance were very, very little. So I know this too, and I feel happy for you to be able to go Saturday, while this were more needed, also for your hubby. Wish you a beautiful day, Lydia 😀

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    1. Thank you, and you too, Irene. I know that if anyone understands what I am talking about you do. By the way, I posted some pictures of a beach near where I live If you would like to see them, I will post the link for you. I love all your pictures!

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      1. Socially, in terms of dealing with discrimination and attitudes, this is clearly the next frontier (along with dealing with Age-ism).

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      1. Incredible article. I have my own version of this, with chronic sleep problems topping the list. (Awake past 3a as I write this.) NO ONE understands, or so it seems. Really, thanks for a GREAT piece on this!

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  7. I’m there with you! MS is such a pain in the pain. I stagger in the heat, then I must be drunk. I wallow in frustration but can’t finish loading the dishwasher. I must be lazy. I found an outlet. I write. I write about life. I write about little things like dandelions. I don’t write about MS. Writing about it would give it a hold over me that I don’t want. Reality is enough, it should stay out of my words.

    I’m writing a novel. It gives me focus.

    I’m also one of those people who go to Patientslikeme.com for support and a good pat on the back. Since finding this support group my days have improved and my attitude has gone from grief and anger to being annoyed but able to laugh, being okay with little things and knowing I’m not alone. It’s free too so it fits in my budget. Support is so very important to us, especially on bad days and it’s nice to support someone else who needs a pat, laugh, nod, or hug. Being able to help others makes the days more important and keeps the dark at bay.

    Hang in there all. Something nice is in the wind.

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    1. Thank you so much for reading my post and sharing your story. I have a friend with MS who suffers from horrible vertigo. I have a form of vertigo as well, but it is one of my lesser problems. It is funny because we will sit together on the same couch, looking forward and talking to each other. We want to be close, but can’t turn to see each other. This is one of our coping strategies – doing something silly instead of sitting across from each other like “normal people”. LOL I know what she goes through so I really feel for you. Hugs.

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  8. Like you, I think I have more push through days than pacing days simply because I want to get it all done. I have to implement a pacing strategy as well to make sure things get done without overwhelming myself. Having help from the hubby is also essential and quite amazing:)

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    1. Yes, the spouses of the chronically ill are awesome creatures! What we learned about pacing is to determine the optimal time frame for your energy and/or pain limits. Then fit the tasks into those blocks of time. You can even do things like switch out tasks. 15 minutes of cleaning the kitchen, 15 minutes of blogging, etc. Thank you so much for sharing!

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  9. I’m actually really good at pushing through and TERRIBLE at pacing, not a good combo. I’m better at pacing on a bigger scale, like pacing an entire week (if I have a social event, don’t schedule more than one more, keep the weekend free for rest if the week is busy, etc) but on a smaller scale I’m totally useless at it. Something I need to work on! It is good though when you can get yourself through something and sometimes it’s worth the fall out afterwards!

    Caitlin – Chronically Caitlin

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    1. Yes, it can be worth it. And sometimes you have to forsake one thing for another like I did with the memorial service and the birthday. I couldn’t go to both and the memorial was more important to me.

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  10. I’ve been there–not exactly the same place, but one that was enough like it that I think I understand. For me, the issue wasn’t so much what other people did or didn’t understand, or what they thought. It was balancing the cost of pushing through against the cost of not doing it. If I pushed, it left me exhausted later. If I didn’t, I ended up isolated and demoralized. Either way there was a cost–and a gain.

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