What I Wish People Understood About Being a Sick Mother

Nobody knows of  the work it makes
To keep the home together.
Nobody knows the steps it takes,
Nobody knows—but mother.
-Anonymous

I wondered to myself if having kids would change my perspective on chronic illness.
I wondered if it would give me some sense of purpose and make me “fight” harder.
I wondered if having a child would make me feel somewhat “normal” again. Like, I was given this great gift that I would be able to finally talk about with people. Because up until this point I haven’t had much I have been able to talk to people about in which they relate. I mean, lets be real, most people aren’t concerned with the politics of lyme disease or what I go through.Most people don’t care about my out of pocket expenses for medical care, and most people certainly don’t care about something they don’t understand. I’m pretty sure I’ve shared my story before, so I will try to keep this short.
I used to be a pretty active individual. I was in university studying theatre, going to dance classes on the weekends, and was performing in plays- fitting rehearsals in between my homework and classes. That was my life. I took a break off school for a bit, and ended up landing a job I completely fell in love with, I absolutely adored the clients I worked with. I went on medical leave and still, have been unable to return to work as my symptoms are very unstable. (YES, even though I can look fabulous, especially with the help of makeup, which makes it hard for people to see me as “ill”) The crazy thing is, I am ill. I will plaster on a smile for whatever occasion I have to embrace, and pretend that everything is fine. I have become a great actor when it comes to pretending to be normal. I can look like you most likely, but I guess the big difference is that even though I look nice on the outside my body feels like it’s slowly dying on the inside. Some days are worse than others. Some days I have more energy, and other days I just try to make it through the day without having some sort of body meltdown (like a seizure or psychosis).

I am a realist. Being a mother is not easy and I never expected it would be. It is definitely rewarding, and stressful at the same time. I am so thrilled that
God blessed me with a healthy and happy beautiful baby boy. But, I must say it also stresses me out big time, which is only normal right?

I thought having some sort of common ground with the rest of civilisation again would be a nice change. You know? I’ve been off work for a few years so I haven’t really related to the conversations about work life when they come up. So I thought, “YES, now I can talk to people about mommyhood”.
While that thought is true, I didn’t realize how having a chronic illness would drive a wedge in between the mom friends I know, and myself. Yes, the first few months  of no sleep are horrible-and we moms all relate and vent about how horrible it is! But I still have to deal with insomnia in the middle of the night, or I  wake up from pain and then still have to deal with my son. No doubt about it, motherhood is exhausting. And no doubt about it, having a chronic illness is exhausting. If I’m honest, I don’t know how I do it, but I do.  Sometimes I find it gets overwhelming to try and tackle both at the same time. Especially during times where I feel like shitake mushrooms. (I`m really trying not to swear here). Sometimes, I have full body spasms at night, that I deal with while trying to make sure my son is okay.  Sometimes I need to rest so desperately, and I don`t really get to. Not just because I`m `tired, but because I`m scared of my body getting to a really bad place and not being able to come out of it on the other side. I`m terrified that in trying to be a good mother, I will burn my body to the ground so to speak. I just don`t know if that`s relate-able. So yes, I’m tired, but likely in a way you may not understand. In a way my mom friends may never understand. So many women bounce back, hit the gym, go back to work, and start living. And then there’s me, not bouncing back, and not fully living. Having to decide when I have the energy to go on outings and when to stay at home. Unlike a bunch of moms I know, I don’t hit the gym and I don’t go back to work. I have to go out once in a while to feel normal, but I also have to be careful that I don`t overdo it. Too many committments stress me out, because I never know how my body is going to be the day of. If you were to take one look at me you would assume is well and that I “must be getting better”.  But that is part of the reason I think I have massive social anxiety. I often hear, “But I thought you were an extrovert, you are so outgoing!” I find I tend to overcompensate, to avoid the deep awkward questions. I don`t like small talk , and I especially don`t like sharing deep personal things about my life with people who don`t care­. I guess the joy of writing is that I don`t have to force anyone listen to me rant. I don`t have to share boring stories to people who would rather talk about celebrities. You the reader make a decision about how interesting something is. So if you read this, thank you for being interested in what I have to say. (Not just for me, but for the millions of others out there who are struggling like I am).

Here`s the thing about being sick. While having a child is so worth it and I absolutely love being a mother, I feel like I suck at mommyhood. Having a child does not take away from my feelings of being worthless, it makes me confront them- head on. It`s frightening. Sometimes, if I`m honest- being a mother heightens those feelings of inadequacy. I have days where I plan on going for a walk with my son or giving him a bath,  then my fatigue kicks in- I recant by saying, “Well, I guess tomorrow we’ll have a bath, mommy is tired” or “I guess we can go for a walk next week”. It makes me feel like shit-taki mushrooms.
I am only 7 months in, but I frequently feel like I am on the verge of nervous breakdowns because there is so much I want to be able to do with my son, or for my son but I can’t. I think I try to do what healthy moms can do, but I have to realize that is not “my normal”. I find myself constantly asking God to give me some sort of crazy super strength to be able to endure everything and somehow take care of my son. I know that I may never have tons of money, but I am trying my hardest to raise my son in a loving enviornment where is knows that he is deeply carmed for. It’s hard because I wonder how I will keep doing this if my health continues to decline. But I press on. Feeling the weight of this on my shoulders. But then I go out,  do too much during the day, to feel normal, (and to avoid others from thinking I am lazy) only to pay for it later.

Don’t get this confused with post partum depression. I have bouts of anxiety and depression. I am talking about the anxiety and  depression that comes from having a disease that strips you financially and emotionally (us lymies have to fight for our own treatment so we are left abandoned by the medical system). It makes you half of the person you used to be taking away jobs, hobbies, lifestyles. It can cause issues and problems in even the best of relationships as you get sicker and others move on without you. Without a normal amount of energy, chronic illness makes my days harder as a mom. Most people are tired, I am tired because I do not have the same energy stores most people do. I worry about my son contracting lyme from me, I worry about getting too sick to be a part of my son’s life as he gets older. I just find that motherhood makes me worry a lot more, especially when it comes to my health.

I am praying for God to heal me, or to continue to give me the strength as my body relapses. It’s frustrating that even with positive bloodwork- doctors won’t treat my infections so I must pay out of pocket. I am being real and raw. It’s not easy. I’m sure no one really knows what I am going through unless you are in my shoes, and if you are in my shoes, please know that you are amazing and so very  brave. I need to hear it, so I’m sure you do to. You are so worthy of love and to give love away. You are going to make a wonderful mother because you can teach your children about empathy and compassion. You can teach your children about love.

So to those in my life, please bear with me. I know I may snap a lot more, get upset easier, or seem like a basket case, but you have to understand that everyday for me is a battle. But the difference with is child is that now everything has increased in the list of daily demands and my energy has not increased with it. I could use the help, and empathy. I’m tired.

 

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The Love of my Life

 

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