Julie needs an electric wheelchair

Hello!

I have been through a lot in the past 2 years, with 3 different variants of COVID, 1 COVID relapse (which can happen with COVID longhaulers & the Immunocompromised), several bouts of illness otherwise, etc. I have been sick and/or hurting for 2 years.

 

For those who don't know, I have Functional Neurological Disorder post-COVID, which all started on 03/26/2020. FND is where the brain and the body do not send and receive signals correctly with the Nervous System. This is involuntary. I do not have control over it, just as our brain does many things involuntarily throughout the day that we all cannot control. I also have Chronic Fatigue Syndrome, which often ties together with FND and just the pure amount of energy that has to be put into every motion of the day. With my illnesses comes a lot of pain, and I do have Central Sensitization Syndrome, which means I am basically more susceptible to pain.

 

I know people will never completely understand this or even come close to understanding it unless they have gone through it personally, have chronic illness/pain, have a Neurological or similar disorder, or have an autoimmune disease. Even so, everyone's issues are different, and we cannot judge what we aren't going through in the exact way that someone else is going through it. Prior to this happening, I had over 7 herniated discs with chronic pain, a lot of PT and things I had been through in the past. I did also pick up illness quite easily, particularly Sinus Infections, but this all could never even come close to what this has been like.

 

I honestly don't talk about what happened or is happening as much anymore. I just have to do what's best for me and my mental & physical health.

 

In the first round of COVID, I was very sick and lost count at 200+ days as a COVID longhauler. I had become disabled on 07/11/2020 but started to have FND symptoms right away with the complete loss of my speech for 5 months. I have had a lot of issues with my speech up until approx. Dec 21st, 2021, which then went up and down at times. My speech, for the most part, is back to MY normal voice with the exception of sickness, overdoing it, tiredness, etc. It is Neurological and ties directly with my FND. I have a lot of Neurological issues, Nerve pain, full-body pain, etc. I won't get into everything.

 

So to where I'm at:

July 2021-now, I have had a lot of illness and setbacks.

The August 18th, 2021, COVID relapse really messed up my FND and walking. It really hasn't been the same since. On Feb 5th, 2022, I had a huge setback. I could barely walk at all. Initially, I really couldn't. I still can't walk very much and not well at all. Feb 17th, I had a very bad fall taking out the trash, wheeling myself backwards on my walker (the direction you normally push it), down the slanted part of the walkway from my gate, and into a very big hole (drainage hole that completely made a big trench) where my walkway met my neighbor's walkway. I ended up with a huge bruise on my leg and a lot of things needing adjustments at the Chiropractor.

 

To be honest, I have needed an electric wheelchair for a long time. My daughter or mom had to push me when I had to go long distances even from the Aug 18th setback, but with this happening in February, I could barely take 2 or 3 steps. I have had to use my walker to be pushed or wheel myself around. That took a while to be able to wheel myself. I still can't do it for very long. It hurts my legs or my arms (ie: the hallway) a lot. I can go some steps, but it is extremely painful and not sustainable. Basically, take your body and hold your muscles as tight as possible, then try to work with that. My legs are always like that unless sitting, but they always hurt. When I try to walk though, it doesn't just affect my legs; far from it. Think of when you are doing a rigorous workout move, like pushing a weight too heavy for you to really be pushing. How does that affect you? Personally, I have problems with breathing and a lot of issues with my diaphragm as well bad chest pain every single day. On top of that, when I push to make myself go, and it makes me involuntarily hold my breath, it makes my head feel like it's going to explode. Plus, when I am pushing myself to this level all throughout the day, it makes me very frequently feel extremely sick. I just know that type of sickness is from my FND. Icing, at times heat, Biofreeze, ibuprofen, possibly my muscle spasm med, a warm bath with Epsom salts, sleep, etc., these are the things I have to do, and it can be extremely emergency level, so painful. I take a LOT of vitamins and supplements on a daily basis too, and honestly, I get sick if I don't take them.

 

I have really gone back and forth with waiting on this until I am done with Mayo Clinic, and maybe I am being selfish posting this. I just want to be able to get through my time at Mayo Clinic in May for the 3 weeks I need to go to the Pain and Rehabilitation Clinic. There is no way that I can get myself around without this. I do not like to rely on other people. I want to feel independent. I have needed this in my house to get around for a long time and push through the pain. I have crawled on the floor many times to do laundry. I am not weak; I am really strong for what I have gotten through and what I go through every day. I hope and pray to God that Mayo Clinic does make a huge impact in me being able to go into remission for my Functional Neurological Disorder. I just want to do what is right for me along the way.

 

My electric wheelchair needs to be compact, lighter weight, foldable, and functional in my life too. My mobility scooter is not something that is for everyday use or compact for tight places. I can't tell you how much of a pain that thing is to load and unload as well, especially with the scooter carrier I have that has been hit many times by vehicles and grocery carts. The carrier also hits every single bump/little hill underneath it and honestly isn't the greatest as far as stability. Someday I will get a better solution for that with a swing-away & fold up carrier, a lift, or a vehicle that has a built-in lift, but maybe I won't need it someday, so I am hoping for that. Who knows?! I just will get what I need right now. :) The Air Hawk is what I am really looking at with an external battery and an extra warranty. If you are wondering, I have issues with my arms and throughout my body as well as my legs, so that is why I am in need of an electric wheelchair and not just a manual wheelchair. I can also have the option to push this when I can walk and use it when I cannot walk anymore, which will help as hopefully things improve.

 

Thank you for listening to my story. It's been a long journey. I will never stop fighting. There are always going to be so many opinions, but I am the one going through it, so I have to listen to myself on this one. I appreciate and thank you all for your support and love.

 

Thank you!

Julie McCahan