Prior to becoming physically disabled from Postural Orthostatic Tachycardia syndrome (POTS) and chronic pain, I was very self sufficient and I loved it. I worked from the age of 15 until illness swept the independence out from under me at around 22. It felt like my life had become irreparable as my body seemed to fall apart right before my eyes. Work became increasingly difficult, as did the simple task of walking. I previously underestimated what a luxury these things were until they were stripped away. Betrayed by my own body. However, I gained some extremely valuable insight from my experiences with my newly diagnosed illnesses. I learned how to deal with the guilt and shame that came with my illness and it taught me some things to never be ashamed of.
- Asking for help.
While I now rely on my husband for help with more than I had ever hoped or imagined, I realize that it’s okay. One should not feel ashamed for seeking or needing help. I know as a disabled person it feels as if we require attention more so than an average individual and while sometimes this is true, I prefer to think we just need assistance in different ways. ALL humans need help at times and if you’d willingly help your relatives or best friend, why is it wrong to occasionally accept help yourself? You are no less deserving than anyone else, no matter what your mind may try to convince you of.
2. Needing to rest.
I sleep an almost unfathomable amount due to fatigue that comes on from minimal exertion. It sucks to lose out on the day sometimes, but I also know that this rest is vital for my best self to come forward. I will not apologize for listening to my body and its needs. Resting can also include needing to sit down at inconvenient times too, or any occasion where you need to press the pause button. For example, while wandering a clothing store with my Mom recently, I was in tremendous pain and my heart was hammering so I took a seat on the floor for a few moments to regain my composure. This type of situation used to fill me with embarrassment. Anger. Grief. It still does from time to time, but I also recognize the importance of hearing what my body tells me. When my joints are screaming in agony, chances are I’m over exerting and if I skip a much needed rest, I’ll pay for the next few days as opposed to a few minutes.
3. Needing mobility help.
When going to the store, I often utilize my wheel chair. Walking long distances sets my spine aflame with intense pain and can cause me to faint as well. Not ideal in a public setting. So, I use my chair on particularly rough days. Again, I listen to what my body needs and this is something all people should do. Our bodies are smarter than we give them credit for. I have found I have not passed judgement on someone else who needs a walker, a wheelchair, a mobility cart, etc, so why would I pass judgement so harshly on myself? The point being that I shouldn’t; these things exist for the exact purpose of being helpful.
4. Having to cancel plans sometimes.
I know its a real drag to feel like a flaky person but sometimes life happens and we just need to take a rain check. My body is unpredictable most of the time, and some days I simply can not leave bed, let alone entertain guests, etc. It’s important to take time to let your batteries recharge and most of the time people who love you will be understanding as long as you keep them in the loop. I firmly believe that you can not fill from an empty cup, so you must put your own needs first. When your own needs are taken care of, it’s much easier to be there for someone else and you have more to offer.
5. Rough or “down” days.
I struggle with grieving my old life regularly. I used to be a fit young lady who ran miles each day and did weight training. Now one of my biggest feats is lifting myself out of bed. Some days, it’s simply overwhelming to remember that my past self could seemingly perform so much more and better. However, I’ve taken to my writing and caring for my pets as an alternative. Bad days happen and that’s okay, just don’t unpack and move in with the feelings. Feel your emotions and do validate them but remember to do it in a healthy way and ensure you don’t move in with them.