Independence looks different with chronic illness...
A more real and honest post from me about life now. I will return to my other real, honest, happy fall stuff next time. But sometimes it is important to share the reality of what you are living. I wanted to talk about learning to use mobility aids when you are a super independent person. First, chronic illness takes away a great deal of your independence anyway. So adding the use of mobility aids at first felt like defeat (this is me just being honest). This is something I’ve had a very hard time coming to terms with.
It's been a combo for me of thinking I was losing even more of my independence and being far too concerned about people’s judgments and reactions. The first part is just normal being human and me being me. I’ve always been fiercely independent, and I have always had one speed: as fast as possible. I talk fast, walk fast, eat fast, get things done fast, and was never great at slowing down. I kind of blame that on the jobs I’ve had most of my life: retail, babysitting, and fast-paced offices. But I’ve always enjoyed doing things for myself, enjoyed pushing through to complete projects, and working hard.
The second part came from a time just before the pandemic. I had to wear a mask for a long while when out of the house because of being allergic to the outside air (yes, you read that right). It was an awful experience, bad enough on its own. Then, as we moved into the pandemic, I still had to do that off and on, and I faced some very traumatic experiences in public that I was not expecting, nor did I understand. Anti-mask people (who did not know my history or reason for even being in a mask) I guess they assumed COVID was the only reason a person might wear one; it's NOT. I was called names, spit at, and physically assaulted in the grocery store (just crazy stuff). I greatly appreciated a man I did not know who quickly jumped in to help me in that last instance since I was there alone. He said he hoped that if that happened to his wife or daughter, someone would step in for them the way he did for me.
All that created an anxiety over having to use anything that people deem unnecessary visually (if they can't tell by looking at you that you are battling illness). It's ridiculous that it's even a thing. And it has taken me a long time to be okay going in public again when I have to use a mask or mobility aids. I do not go alone anymore so that has helped, but then i couldn't even if I wanted to.
I battle multiple conditions now. I will name a few just to give you an idea of why I have so many mobility issues, among other issues. Two types of endometriosis: one of which is umbilical, so at various times lesions from my navel will bleed, and a nodule will press all the way out of the navel, and the pain is beyond what I can describe. I am not a candidate for surgery on that one. I have multiple vitamin deficiencies, the major ones being the B vitamins, D3, and Omega-3s (my body cannot in normal ways absorb them so we've had to find workarounds). Asthma, Neuropathy, hyperadrenergic and Hypovolemic POTS, which has caused low blood volume and made blood draws a new complication for me, and they were complicated enough as it is; believe me. GERD, diabetes, MCA, or Mast cell activation (which has caused me to be allergic to things I’ve never been allergic to, like cinnamon, soaps, scents, other spices, and foods). I am battling multiple issues from the spike protein from the COVID vaccine (another area people judge me for, knowing nothing about why I had to do that or why I will NEVER do it again. And that is just to name some, and I tire of going over all of it, so I’m going to stop there because that is plenty.
I take nothing for pain; that is a personal choice I made. I have family members who have battled addiction, and I would never want to be the cause of any issues for them. Also, almost all pain medication makes me violently sick. I would 100% be within my rights to take something if I chose to, because almost all the issues I have come with pain. So I in no way judge anyone who has chosen to or has to take medication for pain. But for me, I have instead worked for years on stepping mentally out of pain and breathwork. There are days when it lays me out, and times it exhausts me to my core; managing pain this way takes a lot of mental energy, and I know not everyone can do that. Even I sometimes simply do not have enough, and I don't know how I do it.
Because of all this, a lot in my life has changed. I am not allowed to drive anymore because of the risk of losing consciousness. I have to use a chair in the shower or have assistance. I cannot always walk on my own. I have days where doing much outside of a bed or couch is impossible. This has required me to use mobility aids. But I am slowly learning that these aids have, in fact, restored some independence instead of taking it away. Below are the aids I use and how and why I use them. I still hope and pray daily to get the more active part of my life back, but until then I'm choosing to be thankful and focus on the light where I am.
The mobility aids I use and when and why I use them:
A cane - I have several, and I use these most often to help with balance inside and outside the house. Because my legs can give out and my balance can get shaky very quickly, this helps me stay upright and not fall if I start to waver.
Double forearm crutch - I use these on more severe days when my legs are not steady or strong enough to keep me upright on their own. It’s kind of like having someone walking with me to make sure my legs have extra security. My arms are stronger than my legs right now. Which for sure never used to be a thing.
Nitro Rollator - A cooler version of the seated Walker. So if I’m grocery shopping or at the store or on a short walk and my legs start to fail me, I can sit down and rest so I don’t pass out or fall and injure myself.
The wheelchair – Blood work days, long lines, longer walks, a smooth trail, flea market or bigger store, anything that would normally require a great deal of walking or standing. This ensures there is no danger of me blacking out, falling, or injuring myself, but allows me to still do things occasionally outside the house.
I wanted to write about these because, as much as I’ve hated them, they have given me a degree of independence back. I will forever pray that I eventually won’t need them. But for now, I don’t want to fall into anything, pass out, and hurt myself or anyone else. Or have to pay for things I broke by collapsing. I’ve found that once I got in the habit of using them to keep me, those around me, and those caring for me safe, it was actually less stressful. I don’t have to death-grip things and constantly stress in my mind if I’m going to make it walking or if my legs will give out, if I'm going to pass out, fall, break something, or knock someone else over.
My wheelchair is not new. So I adapted it. I had an old summer dress I loved that no longer worked for me, so I turned it into a cover for my wheelchair. Actually, none of these items (mobility aids I use are new. We love thrifting in my house, so garage sales and thrift stores are far cheaper than insurance or paying out of pocket. I am deeply grateful for what insurance pays, but there is a tremendous gap in some things.
I’ve included pics below of my mobility aids. It has made me far more aware of how many areas are still not set up for people with disabilities. Again, I am a person who fought through Lyme disease and who is used to being fiercely independent. It is my personal struggle. I am not in any way putting anyone down who has to use mobility aids regularly. I have so much respect for everyone who has learned to be independent with a permanent mobility aid. But for me, this was not something I was used to. I’ve had to adapt beyond what I was already having to adapt to.
My purpose in this is NOT sympathy or even attention, other than to bring attention to the fact that none of us should be feeling like this while using something made to make our quality of life better, and to help anyone like me trying to navigate all this.
I use what I have to, in order to keep whatever independence I can. I use what I can, where I am, with what I have at the time to keep going. I write and design from bed, from the couch, from anywhere and everywhere I am able to, in whatever way I can. I do NOT quit. I keep going, keep trying, keep learning. And although some days are extremely hard. The work I put in to stay alive and have a purpose is always worth it. I am thankful that I have learned to manage good and bad days. That even on the hard days (even if I have to use the rollator in the house to sit and move), I still cook, clean, take the dogs outside, feed and water them, and do what I can to contribute. I never stop trying and working towards doing as much as I am able to. And I've started to enjoy so much more of life because of this. I never let my limitations become excuses.
If the day comes that I have my full health and mobility back this side of heaven, I will be the happiest person in the world, and I will be going all over the place lol. But even if it doesn't, I'm no longer going to allow it to stop me from living as much of this amazing life as I possibly can, in as many ways as I can. Taking nothing for granted. And I know that is so hard sometimes; there are days when resting and staying in bed is the only option you have, and that rest will enable you to do a little when you can. So never berate yourself for the days when you just can't. And I know there are days when we cannot be around the people we want to be because of the risk of illness. Which is why taking advantage and using the days we can are all the more important.
If you have read this far, thank you; I know this was a longer post.
I wish all of us battling chronic anything a ton of love, light, gratitude, healing, and life. We are all so much stronger than we know.
I also wanted to share an Insta post that helped me so much in a very low moment. She is also a chronic Illness warrior.
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