As written by Melissa Gill from her blog page @My Journey With Jackson
I honestly never realized how coping with Jackson’s extreme needs would affect me physically.
I had read about the effects from a few other bloggers prior, so I was not completely unaware. I guess I just never thought it would happen to me.
I have always been very determined and from a young age, always had a mindset knowing that if I wanted to achieve a goal I could. That I would do whatever I had to until that goal was accomplished.
In the past that mindset had always worked for me. Here lately, the negative physical effects I have from being a caregiver of a special needs child are all I can think about.
I feel myself slowly deteriorating.
As I continue to venture along weeks without a proper night’s sleep, I can clearly see what it is doing to my mental and physical health. The main thing I have noticed is my short term memory is getting pretty bad. The brain fog is becoming an actual problem. I can be mid conversation with someone and regularly, I will completely forget what we were talking about.
I have an amazing long term memory and visually seeing something a few times will have me remembering something very easily and most likely forever. However, most of the time I am forgetting things that I literally just did or said. Literally as they are happening.
The determination I once had is no longer even slightly the same. When it finally dawned on me that it is going to be hard and time consuming, potentially forever, that hope and confidence I had in me before, is now replaced with loads of anxiety and doubt.
Avoiding doing things due to fear of failure, anxious due to lack of sleep, brain fog, and a scattered demeanor.
Anxiety and stress lead to skin issues with dermatitis. Which turns into “skin picking.” That turned into a nasty and embarrassing habit I can’t seem to kick- whether in public or not. I can stop and let everything heal up but next week it will come back in full force.
Lack of time and assistance has in consequence caused dietary issues. I rarely cook a meal anymore, even though I actually at one time, loved cooking different healthy meals and I was confident in my cooking skills. Now as I try to make a meal I wonder if I either forgot some of my best skills, or if it has become such a burden to eat in general that I do not care enough to make food with the extra attention to detail I used too.
Also cooking a full meal when you have a sink full of dirty dishes, or haven’t had the time or money to go grocery shopping, it is not always feasible for here. So as a reflex, I will consume a chicken nugget or a cheap hamburger while drinking coffee like it is going out of style.
It has also come to a knowingly embarrassing, smoking habit. Primarily due to that being the only time my children cannot access me due to the smoke. I am nowhere near proud and this is all actually fairly embarrassing and hard to be vulnerable about.
Regardless, my personal declining health Is becoming very noticeable to me, and clearly very noticeable to others around me as well.
Needless to say since last summer I have gained about 30 pounds regardless of the fact that most of the time I have barely eaten. The effects of weight gain and lack of sleep have been coming on stronger than ever.
I see the clothes that don’t fit, the heat intolerance, the skin issues, and old pictures of myself…I know what I could do to fix those specific issues, yet I cannot figure out how I can do any of those things when most of the time here lately, I can’t even think straight.
As a part of me is actually happy with the fact that I am not obsessed with my appearance as I once used to be, to be honest…this seems to be going too far this time, and I am not quite sure how to slow down the derailing train that is currently my health when I give so much to others that I have nothing left for me.
Nothing except my writing seems to clear my head. But truly I barely have time to even focus on my writing. Regularly stopping repeatedly to help Jackson. I have so many unfinished writing pieces due to constant distraction.
It honestly seems like I never have time for anything.
At this point it is so much more than my appearance that is the issue. My son needs me. Me specifically. Yet, his needs are constant, as well as very physically and mentally demanding.
Jackson is an amazing kid and to be honest has progressed beautifully. However, with every progression seems to follow a very time consuming, and mentally/physically draining regression phase that puts me back at square one.
As concerned as I am, I have a feeling that after we start services, I will be able to develop more of a routine and time schedule to hopefully focus on meal prep or exercise. The problem is I do not know when that will be, or how long it will take to settle in due to the fact he has not been in therapy.
So, I am just stuck here in limbo. Forgetting things, not eating right, not sleeping, all the things.
Even though we are truly moving forward and progressing. Even though things are actually getting somewhat easier to adjust too, it has taken so long in this process that now I am a mere fractured shell in a body that two years ago, I could overcome almost any obstacle.
My personal health has been weighing on my mind more than ever. Most others without the same issues will most likely try to provide knowledge of diets and workout routines – without even realizing it has nothing to do with me not knowing what to do to promote good health. I am actually very skilled in that department, truly a plethora of knowledge.
If you were to have any knowledge on healthy habits in response to special needs caregiving or really, even if you can relate at all to what I am saying, caregiver or not, I would love to know. Because honestly, as I sit here feeling like I am withering away most of the time, I would really love more than anything to not feel so alone, or like such a failure.
I know my son needs me to be here, but being stressed out and unhealthy, yet loving mom, and caregiver, is all I can seem to attain these days.
As hard as it was for me writing this, exposing my most damaging issues that are sure to be judged at some point, people have to know what is going on. They need to acknowledge that as a caregiver, a person who gives their entire life to other – often times there is no support.
There is almost no help.
Very little- sleeping, eating, bathing, mental space. Somehow we truly are expected to keep ourselves healthy and live forever. Yet at the same time we will be judged for not loving our children enough. The logic is “Do you love your children enough to take care of your health?” The more than devoted time, attention, and love they require is given everyday all day, potentially for the rest of their lives.
But, what many others do not understand is the day in and day out for us will never be enough. That somehow as we rapidly decline, we have an obligation…to live forever.