Tried to be a mother in a chronic condition

By: Dr Alexa James

At least by the standards of society, I won’t lie. I succeed in being a mother. Not because I don’t love my kids because, above and beyond anything I could ever have imagined, I do it. No, my body makes me spend more time, energy, and money on ensuring I survive and work than I can on my children, I suck being a mother. It was very difficult to accept that I could not give them all I deserved. I’ve been severely depressed for years and beat myself.

I hated myself for some time because of my guilt and shame. When I was healthier, it was a big problem for me to feel as close as I can to the perfect, so much so that I became insane trying to make every small aspect of my life micromanage able and often the lives of people around me. It was both good and bad, trying to be as close as possible to perfection.

It meant that I could do things that the average person couldn’t (at the time) but that I was also extremely obsessed with every detail. I’d be obsessed with things that didn’t really matter but could ruin the whole thing for me. It was devastating for me to finally realize that I would not be a “super mother.”

So much so, I still have tears in my eyes, although I write about it now-I am better off to accept my limitations. It wasn’t at all easy to accept, but it was necessary to stop feeling so guilty. The guilt was detrimental to my own mental, emotional, and relationships. Time contributed partly to this acceptance. It was much harder for me to think I could not do anything when I was younger.

I had to accept it to find out how to be’ ABLE’ –not the best I can be compared to healthy people. So I don’t have to find unconventional ways to be a “good mum” for my children as physically as the average person. Fortunately, I’ve got a supporting family who did the things I couldn’t do for them. My children have never been lacking in love and have never starved or met their needs.

I am so blessed and unbelievably appreciative that my parents care for it. I know everyone isn’t able to step in and help in this way. I don’t accept that it wasn’t me who could 100 percent provide them with this stability even when I know how good they were in a lifetime. I wished desperately, but every effort to fix something wrong with my body was foiled by an emergency operation or procedure.

I finally gave up trying to work a real job almost three years ago. The last time was an eight month long period, and at the end there was a 19 day torturous urethra stent experience. It’s never impossible for something like that to happen at a time when I can get enough income to stabilize or finally get to an objective that I’ve been working toward. I learned that I can keep the major medical events, which require hospitalization or bedriding, from taking place so often if I do not work, limit my activities, care about what I put in my body, and take time to recover between activities.

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Easy, eh? See, stress aggravates every condition I have. (The Sarcasm Please take note.) It lowers my immune system and makes me generally more susceptible to flares due to my fibromyalgia and any viruses or bacteria with which I come into contact. I come into contact with all kinds of germs when I have to go to an office every day to work. Because my immune system is crappy above all else, I am sick and it is likely to get much worse than that if I meet somebody with a cold-and it will lead to worse things. I can’t stay away from it until I remain home. It’s a vicious cycle.

This also applies to almost all. Don’t work doesn’t mean I can spend with my children all the time I want to, and do anything. My children attend public school and are exposed to all the diseases I have brought in, so I also have to be very careful when I have close contact with them sometimes. I just look and feel too bad other times to let them see me like that. It caused him stress and nightmares when my oldest was very young to watch me sick. I chose to allow them to live permanently in my home while maintaining a place in the neighborhood.

When I looked / felt good enough not to scare them I spent as much time as possible with them, and just telephoned when I was so sick to be around. It was not perfect, but I had to decide that it would be better to be alive and to function partly than to work to death. Some of you might consider it egoistic of me to do something like that, but I feel that when I had the option of relieving some of that, it would have been egoistic for me to put them through fear and stress.

Now I am 18 years old and may not have been allowed to ask a more responsible, caring, knowledgeable, compassionate and well-adjusted man. He leaves his way and tells me that I have done the best I can through them. Nothing can take it away whilst it helps guilt somebody. Although I feel guilt and anguish, I still have two wonderful children who are very well adapted and honestly can say that they are loved.

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My point is-we are not so much as long as we love the kids and take decisions which are the best for them as we cannot get our bodies to work like they are supposed to do, as long as we do not succumb to the feelings of not being good enough or the pressure of society to function beyond our physical ability and put it potentially in.

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These sensations can get into our heads and make us feel more comfortable with our parenthood. This could lead us to make our bodies feel better than better, or to take decisions based on the things we shouldn’t do. At the time, it doesn’t feel like that. It seems that we try to do what is best when we are the perfect parent. I’d love to keep my kids full time like a normal family in my home.

It would make ME feel like a better mother, but it was not better for them. Sometimes being a good parent means knowing when you can’t say you can do anything and ask people you trust for assistance. I’m not suggesting that every person who is chronically ill runs out to find someone to take their children. I’ll just say that based on your specific circumstances and the general picture you should evaluate your situation. Try to reflect on these questions when evaluating:

  • Does this activity cause additional injury to my body? When compared to the advantages of doing this, compare that additional damage. For example, it is not best to put yourself in a hospital to participate in a game or recital if someone else can support your child.
  • Is this an activity needed, or can I do something easier on my body instead? One example of something easier is a virtual presence, rather than having a physical presence or perhaps having a private dinner together rather than a large party.
  • Is there more chances of doing this in the future? Or something I was to before?
  • How much does my child care for my presence in this particular activity?

Please apply all of these questions. Even small, worldly activities, because you can figure out how to lighten your load without having a real impact on your children. You must weigh options if you are chronically ill. Instead of attending, it sometimes means to have someone log the game or recital because attending causes your condition to worsen.

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It is more important than keeping “appearances” alive and able to interact with your kids or that other people don’t think that you are doing enough. You know what can handle your body, and what it can not handle. You can’t do all you can to care about yourself and your children for as long as you can, but as a parent with chronic disease, you can only fail, so long as you’ve done what you can do to help them.

Healthy parents are luxurious that if they choose to be there for all. We’re not, so to be there is more important than to get into the ground trying to do whatever we think a healthy parent wants to do. If you are lucky enough to have a support system, ask for help. Taking care of yourself, allow them to do what you need to provide your children with stability. It is neither disgusting nor egotistic— it’s clever.

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Yeah, I’m still guilty. It will probably never go away completely because I’m a mother who loves her kids and wishes to “do” them. I wish I was able, but life had other plans and I had to adapt. I wanted to do all the things’ super-mum’ I certainly know that the best thing for their well-being was my decision.

The evidence shows how well it is adjusted at my 18-year-old. Don’t beat what you can’t do to beat yourself. Put all the energy and concentrate on what you can do and use it to show your concern. Try to be there through videos and images, and for the time before and after when you can’t be physically. Be always emotionally available to them. If you can’t physically do anything for them, find someone you can. There are so many ways to show your love that we normally don’t think about. Look for and do these things at all times. Whatever you do, don’t feel bad enough that you can’t. You, or somebody else, don’t help.

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