The last few months have been extremely difficult for many reasons- the biggest reason being the fact that I have lost my mobility, therefore, losing my independence. This isn’t the first time it has happened, but this time around is a lot more challenging than it has been in the past.
The first time I ended up in a wheelchair was about 4 years ago when I first developed brain lesions and had a metabolic stroke. Not only couldn’t I walk, but had a lot of issues with my fine motor skills and memory. I did 3 years out outpatient therapy (and worked my butt of at home) and eventually got to a point where I was able to live fairly normal again. I put in a lot of hard work and got one good year out of it.
This time around, my entire body is weaker than it was last time and I am constantly fatigued. I am on home care and only get 2 hours of physical therapy a week. I’ve been on a clear liquid and crackers diet for almost 3 months now because of GI issues. I rely on IV fluids to keep me hydrated which means I’m connected to an IV pole for 27hrs at a time 3x a week. My wheelchair is busted which makes it hard to push myself in it, and impossible to get anywhere by myself when I have to worry about bringing my IV pole with me.
I live with my parents in a 3 story home. We do not have a bedroom or full bathroom on the first floor so I’m stuck having to tackle the stairs. To get up them, I have to use full leg braces and an uneven walker. It is extremely difficult and my mom has to help me up each step. I don’t have a lot of energy so I only tackle the stairs when I have to leave the house. So obviously, I spend all my time in my bedroom (except for the occasional time I spend in the bathroom). My mom makes all my meals and brings them up the stairs for me. My mom also helps me get to the bathroom (which is a lot when you’re on IV fluids). My mom is amazing, but I don’t want to need her.
I don’t want to sound ungrateful because that isn’t the case- I am beyond grateful for my parents. They are amazing and do everything they possibly can to make sure I get the best care possible. I’m 24 years old and they still support me and are going to continue supporting me. They don’t see me as a burden and I am extremely grateful for that.
The thing is that I want to be independent and it’s frustrating that I’m not. This is the time in my life that I should be livin’ it up, but instead, I’m homebound and dependent. Part of the problem is that I need better medical equipment and we are working to solve that. The other part is that I have a progressive disease and that isn’t fixable.
So how does someone deal with the fact that they are not independent? Personally, I know that I’m not dealing with it in a healthy way. I am trying to fix all the problems that are fixable but I’m having a hard time accepting the fact that some things can’t be fixed. I know the reality of the disease, but I just can’t picture my future life this way. Thinking about my life always being like this, or worse when my disease progresses, gives me major anxiety.
So I just pray. I pray for strength to get through all the hard stuff. I pray that total IV nutrition helps me get stronger. I pray for a portable IV pump. I pray for a better wheelchair. I pray that my parents can find a more handicapped accessible house to move into. And I pray for advancements in Mitochondrial Disease research. I thank God for the blessings in my life and I try my best to live my best life, even if my best consists of lying in bed all day. I try to wake up every day and be grateful for the fact that I am still alive.
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