Trying To Be a Mom When You Have a Chronic Illness

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I’m not going to lie- I suck at being a mom- at least by society’s standards. Not because I don’t love my children, because I do, more than anything, and more than I could have ever imagined. No, I suck at being a mom because my body forces me to spend more time, energy, and money on making sure I can survive and function, than I do on my kids. It was very hard to accept that I wasn’t going to be able to give them everything they deserved. I spent years severely depressed, beating myself up about it.

The guilt and shame caused me to really hate myself for awhile. When I was healthier, I had a huge issue with feeling the need to be as close to perfect as possible, to the point I made myself crazy trying to micromanage every little aspect of my life, and many times, the lives of those around me. It was both a good, and bad thing, trying to be as close to perfect as possible.

It meant I was capable of accomplishing things that the average person couldn’t (at the time,) but it also meant I could be super obsessed with every detail of every situation. I would obsess about little things that didn’t really matter to the bigger picture, but to me- could ruin the whole thing. For me to finally come to the realization that I was not going to be “super mom,” was devastating.

So much so, that even writing about it now still brings tears to my eyes- but, I have gotten better at accepting my limitations. Acceptance has not been at all easy, but it has been necessary in order for me to stop feeling quite so guilty. The guilt was damaging to my own mental and emotional health, as well as my relationships with others. Part of what helped with this acceptance was time. When I was younger, it was much harder to think of myself as unable to do anything.

I had to accept it in order to figure out how to be the best I am “ABLEto benot the best compared to people who are healthy. I’m not as physically able as the average person, so I have to find unconventional ways to be a “good mother” to my children. Thankfully, I have a supportive family that have done all the things I wasn’t able to do for them myself. My children have never had a lack of love, and they have never gone hungry, or without their needs met.

I am so blessed, and incredibly grateful, to have parents who care enough to make sure of that. I know that not everyone has someone who can step in and help that way. Even knowing how good of a life they’ve had, it’s still very hard for me to accept that it wasn’t me that was able to 100% provide that stability for them. I desperately wanted to, but every attempt was foiled by an emergency surgery, or procedure to fix something gone wrong in my body.

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Almost three years ago now, I finally gave up trying to work a real job. The last time was an 8 month stretch, and at the end of it was a 19 day torturous experience with a urethral stent. It never fails that something like that happens right when I am at a point where I may have enough income consistently coming in that I can actually have some stability, or have finally made it to a goal I was working towards. I learned that if I don’t work, limit my activity, am very careful about what I put in my body, and take the time the recover fully between activities, I can keep the major medical events, that require being hospitalized or bed-ridden, from happening so often.

Simple, huh? (Please note the sarcasm.) See, stress exacerbates just about every condition I have. It lowers my immune system, and in general, makes me more susceptible to flares from my fibromyalgia, and any virus or bacteria I come in contact with. When I have to go in to an office to work everyday, I come into contact with all kinds of germs. Since my immune system is crappy on top of everything, if I encounter someone with a cold- it’s over, I’m sick, and it’s probably going to get way worse than it should, and lead to even worse things. It’s a vicious cycle I can’t stay away from unless I just stay home.

That applies to pretty much everything, too. Not working doesn’t mean I get to spend all the time I want with my kids, and do whatever. My kids go to public school, and get exposed to all the illnesses brought there, so there are times I have to be very careful about being in close contact with them, too. Other times, I simply look and feel too badly to let them see me that way. When my oldest was very young, it caused him stress and nightmares to see me sick. I made the decision to allow them to permanently live at my parents house while I kept a place nearby.

I spent as much time as possible with them when I looked/felt good enough to not scare them, and just communicated by phone when I was too sick to be around. It wasn’t ideal, but I had to make the decision that being alive and partially functioning is better than working myself to death. Some of you may be thinking it selfish of me to do things this way, but I feel it would have been more selfish of me to put them through fear and stress when I had the option to relieve some of that for them.

My oldest is 18 now, and I couldn’t possibly ask for a more responsible, caring, understanding, compassionate, well-adjusted man. He goes out of his way to let me know that I have done the best I could by them. While it helps the guilt some, nothing ever fully takes it away. Despite the guilt I feel, and the anguish I’ve experienced over the years, I still have two wonderful children who are very well-adjusted and can honestly say they are loved.

My point is- even when we feel we are failing miserably as parents because we can’t get our bodies to work how they are supposed to, we aren’t as long as we are loving our children and making decisions that are the best for them, instead of succumbing to our feelings of not being good enough, or the pressures of society to function beyond our physical capabilities, and potentially putting them in worse situations.

Those feelings can get into our head and make us want to feel better about our parenting abilities. This can cause us to push our bodies to do things we shouldn’t, or make decisions based on what makes us feel better rather than what is better for them. It doesn’t feel that way at the time. It feels like we’re trying to do what is best by being the perfect parent. I would have loved to keep my children in my home full-time like a normal family.

Also Read: 6 Tips for being a mom with fibromyalgia

It would have made ME feel like a better mom, but it wouldn’t have been better for them. Being a good parent sometimes means knowing when to say you aren’t capable of doing something and asking for help from people you trust. I’m not suggesting every chronically ill person run out and find someone to take their kids. I’m just saying that you should evaluate your situation based on your specific circumstances and the big picture. When evaluating, try to think about these questions:

  • Is this activity something that will cause extra damage to my body? If so compare that extra damage to the benefits of doing the activity. For instance, putting yourself in the hospital to attend a game or recital isn’t the best option if there is someone else who can be there to support your child.
  • Is this a necessary activity, or could I do something in place of it that is easier on my body? An example of something easier is having a virtual presence somewhere instead of being there physically, or maybe having a private dinner together instead of attending the huge party.
  • Is this something there will be more opportunities to do in the future? Or something I have been to previously?
  • How much does my child actually care about my presence at this specific activity?

Apply these questions to everything. Even small, mundane activities, because that’s where you may be able to figure out how to lighten your load without it really impacting your kids. Being chronically ill means you have to weigh options. It sometimes means having someone record the game or recital, instead of attending, because attending will cause your medical condition to worsen.

Being alive and able to interact with your children is more important than “keeping up appearances,” or worrying that other people don’t think you’re doing enough. YOU know what your body can handle, and what it can’t. Not doing everything you can to take care of yourself so that you can be around as long as possible for your kids is the only way you can fail as a parent with chronic illness, as long as you’ve done what you are capable of to be there for them.

Healthy parents get the luxury of being able to be there for everything, if they so choose. We don’t, so being there for what we are capable of is more important than running ourselves into the ground trying to do everything we think is expected of a healthy parent. If you are fortunate enough to have a support system that can help you- ask for help. Let them handle what you need to in order to give your children stability while also taking care of yourself. It’s not shameful or selfish- it’s smart.

Yes, I still feel guilt. It will probably never fully go away because I am a mother who loves her children and wanted to be able to “do” for them. I wish I had been able to do all the “supermom” stuff, but life had other plans, and I had to adapt. I know, without a doubt, that my decision was what was best for their well-being. T

he proof shows in my 18 year old, and how well adjusted he is. Don’t beat yourself up over what you CAN’T do. Put all the energy and focus you have into what you CAN do, and use those things to show you care. When you can’t be there physically, try to be there via videos and pictures, and for the before and after. Always be available for them emotionally. If you can’t do something for them physically, find someone who can.

There are so many ways to show your love that aren’t the things we normally think of. Look for those things and do them at every opportunity. Whatever you do, stop feeling badly for not being able to do enough. It doesn’t help you, or anyone else. #fibromyalgia #chronicillness #parenting #staystrong

Also Read:

Being a daughter of a mom with fibromyalgia

 

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