For the invisibly disabled, practical actions vary according to their specific challenges. Some are blind. Others are deaf. Still others deal with PTSD. Many people live with chronic fatigue syndrome and/or fibromyalgia. Then there are people like me with neurologic conditions.
My problem: severe fatigability keeps me from walking very far. I cannot walk into a store, around it, and out again. Nor can I walk around the block.
My priority: spending time with family—shopping, sightseeing, whatever.
My solution: use a wheelchair; later, buy a scooter when financially able.
And now. Joe and I can go into a store or mall and stay together or split up according to our purpose for shopping. We can “hike” trails together. We can sightsee.
Tulip Festival, Marysville, WA
Picture above: visiting the tulip fields. Joe and others took turns pushing me so I could enjoy the beauty, too.
These are concrete actions that I needed to take in order to extend my abilities and be with my family more.
But what actions can you take? It might be easier to figure out what activities you can do if you look at the principles listed below. Principles you can apply whatever your condition.
5 principles to help you plan practical actions
Beneath each principle, see how I applied it—or would have if I had known it.
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Know your own body, limitations, and abilities.
- Evaluate your condition.
- Don’t push yourself.
- In my case, it was relatively easy to know my limitations because my legs would first hurt, then quit working when I tried to walk too far. However, it took trial and error to learn that.
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Assess your circumstances.
- Redefine expectations.
- Do only what your strength or condition permits you to do.
- For Joe and me, family is all-important. Spending time with our sons and their families is a high priority. But sightseeing and hiking pose problems. I want so badly to be with them, yet accessibility and my fatigability limit me. I often have to re-define expectations and realize I can only join them through the pictures they take. In many places, the wheelchair or scooter enables me to join them. We took that wheelchair some very unexpected places! And, boy, did we get some looks!
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Evaluate and use your strengths.
- Harness that power.
- Learn specific ways to compensate for what you cannot do.
- It took me a while to realize that one of my strengths is planning. A complementary strength is organizing. Add to that, I tend to be meticulous. Now, these strengths can become weaknesses if carried too far. But kept within reasonable parameters, these permit me to get much more from my limited energy. Planning for the use of the wheelchair and scooter empowers me to compensate for the walking I can no longer do.
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Accept—or even seek out—help when you need it.
- Know when you really cannot do it all and need assistance.
- Accept help when offered; seek it when you have to.
- It's easy for others to see when you need help when using the wheelchair. Doors need opening. Maneuvering up a couple steps takes two people while I walk. Strangers have often helped.
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Find practical ways to move forward with your life.
- This is where your work comes in.
In Closing
If you are dissatisfied with what your life looks like, maybe these principles can help you adjust and achieve more within your limitations.
This is a really useful post and great reminder for all of us with chronic health…..it has taken me a long time to truly acknowledge and accept that I do know my own body and limitations! It can be so hard for our loved ones to accept and understand this too. Following on Elizabeth’s comment, I have recently got a motorised wheelchair and keep asking myself if I really need it when i can walk……but when I went out without a wheelchair at the weekend that didn’t go so well. I knew the answer really!! Claire x
In some ways, it was easier for me to learn my limitations. When I transgressed them (easy to do; done frequently), it was like hitting my head against a wall. I got tired of that pretty quickly. My muscles fatigue fairly quickly leading to lots of pain. I don’t like hurting. 🙂 But on the good days, I still question, “Is this real? It’s too weird.” Then I overdo; then I know it’s real!
When my husband and I go shopping now, we go to a big supermarket, because they have mobility scooters there for disabled customers. I was so reluctant at first to use one, but they’ve made shopping much easier. I already knew my limitations, but still pushed too much.
This is a helpful post for people.
Thank you. I began using the mobility scooters when stores first got them. Before that, my husband pushed a cart with one hand and pulled my wheelchair with his other. My arms are too weak to push myself. Scooters were a big relief! Sometimes, though, I get so tired of having to use one. But I do like shopping!