Endo Challenges: Parenting, Family Life, & Chronic Illness

When we chose to start a family, we weren't in the most ideal of situations. At the time, we were living with my dad. I had recently been made redundant from work while on sick leave and recovering from a very bad flare up of endometriosis. Danny had a good job and we had a lot of hopes for the future, but, for me, really, the only way was up! My pregnancy struggles We knew it wouldn't be easy and we weren't even sure it would happen at all, but, we decided to try. And that age old tale of "pregnancy cures endometriosis" was, admittedly, firmly lodged in my mind. Besides me knowing full well that it was a myth, I still hoped that pregnancy might in some way improve my symptoms. The whole trying to conceive part wasn't as simple as we had hoped. We found out that my endometriosis had caused irreparable damage, I had a blocked fallopian tube and I wasn't ovulating. But, we kept going. We set up a home, decorated a nursery and after 2 fruitless years (and a lot of tears!), we began IVF. We ended our single round of treatment with all our hopes pinned on our 1 tiny blastocyst. But, it worked. Motherhood The pregnancy wasn't easy and I spent much of the time back and forth to the hospital in dreadful pain. Thankfully, he arrived safe and sound and flipped our entire world on its head. Our beautiful baby boy. I wasn't afforded much time before my body started causing problems once again. I was 4 weeks postpartum when my periods returned and after 9 months off, they were hellish! Over time, I had a lot of other health problems arise and gradually my health has declined to a point worse than where it was when we started. Trying to balance being a new mother with ill health was challenging to say the least. Caring for someone dependent on you 24/7 when you are, most days, unable to care for yourself was very difficult, and this also had a knock on effect with my mental health. I soon realized that motherhood for me was never going to be the same as it was for others. Finding ways to adapt With my body against us, we had to find ways to adapt our situation. I have learnt to focus my energy on my own family. I try not to worry about what others are doing and what we could be doing. We have all had to learn to cope with the eventuality of me going in to hospital. I now plan for these times (just in case) After 4 hospital stays in the past year alone, I have learnt how to support our boy through these difficult times. I have found new routines to help with managing our home. This has been easier on my health, giving me more energy to do other things. And on those rare 'good' days, we make the very best of it. Parenthood is one big adjustment. We just have to make slightly bigger adjustments. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] I constantly talk about the pain endometriosis causes me as I live and deal with it. It's horrible, I've said it a million times. I've talked about it, described it, and felt it, every day for years. But I am not the only one living with pain. I may feel the pain physically, but my loved ones feel it mentally. Uncontrollable irritability I wake up in a bad mood from not sleeping and being in pain. I am immediately snappy and rude. The day only gets worse from there. It's like living all day wanting to jump out of my skin. Everything that surrounds me feels magnified. Noise, smells, frustrations, messes, etc. It makes me crazy. I feel like everything makes me want to scream and yell. Clearly, it's someone else's fault that I can't find anything to wear, primarily because I am extremely bloated or buttoning my pants causes discomfort and pain, right? Lashing out Whether it's my dog barking over nothing, my son crying for no reason, or my husband asking unnecessary (in my opinion) questions, it sets me off. I have no patience and it's not fair to them. I am like a ticking time bomb waiting to go off from the most minute trigger. And when that button is pushed, I lash out. It's not necessarily what they said or did (well, not all the time!), but it's the physical pain that I am in all day that causes my irritability to become uncontrollable. Being trapped behind mental bars When the anger strikes, I feel like I am trapped behind mental bars. I know I am snapping and lashing out verbally when it's not necessary, but I can't stop it. My words won't stop when my brain is begging them to. I know it is out of line and uncalled for, but I am also so miserable I can't find the words to apologize. They should feel bad for me because I am the one in pain, right? However, it shouldn't be that way. Thankfully, they don't know what it feels like. They don't know the pain I am in unless I tell them and who really wants to be that complainer saying "ouch" every second, because that's how often I feel it. Or sometimes, when I try to describe how I am feeling due to pain and exhaustion, it just comes out in an emotional mess that nobody can understand! They don't know how irritable I am until it's too late and I have already lashed out, so why should they apologize for me being in pain? I never want anyone I love or care about to know the struggle of living with endometriosis and since the words are hard to find on the spot when I am in that mental state of feeling trapped behind angry bars, this is my open apology to anyone who has unfairly been on the other side of my angry endometriosis backlash. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Being a parent is a tiring job, and often, life with a chronic illness often comes with fatigue. Both together can be a recipe for complete exhaustion and feelings of defeat. Fatigue is an unrelenting feeling of tiredness or weariness that often does not improve with rest. Some describe fatigue as being “tired to the core” or “bone tired”. Fatigue can be a symptom of a chronic illness, a complication of a condition, a medication or treatment side-effect, or due to constant stress. Fatigue on its own can be incredibly challenging to manage, however, when adding a child or family responsibilities to the mix, it can feel like an insurmountable battle. Challenges of parenting with a chronic illness Parenting with a chronic illness comes with its own challenges, such as feelings of guilt for not being the parent you envisioned yourself being, constant unpredictability, fear of the future, and more. For many, physical limitations may have been expected, depending on the nature of their condition or its treatment, but others may be completely unprepared for chronic fatigue and how it might impact their daily functioning. Combatting condition-related fatigue while parenting While fatigue may seem unbeatable at times, there are strategies for managing it that parents might find useful. Here are some ways to combat fatigue: Get moving when you can: It may not always seem feasible to exercise, especially when you’re not feeling great or have physical limitations. However, a little bit of low-effort exercise as often as you can may help provide you with a boost of energy. It may even be possible to allow your child to join in on your exercise, such as a walk around the block or hike with your dog when you’re feeling able. This may allow you to get the exercise you need, while providing a special bonding activity for you and your child. Provide good fuel to your body: What we eat has a large impact on how we feel. Trying to cut back on sugar and processed foods, and drinking plenty of water may help improve energy levels. Practicing and sticking to a healthy, balanced diet is also a great way to teach your children about the importance of healthy eating. Eating well together may help you stay on track, as well as teach your child an important lifelong lesson. Attempt to stay on a routine: Although life with a chronic illness (and children themselves) can lead to unpredictability, attempting to stay on a routine may help improve sleep and stability. Both of which may help you fill up your tank and keep moving forward. Working with your child on developing a daily routine, especially a bedtime routine, and sticking to a schedule as best as possible, may help you both stay on track, get good rest, and feel energized and prepared to take on each day. Give yourself a few human minutes each day: As small as it may seem, taking a couple of minutes every day away from your kids to take a hot shower, put on some clothes, brush your hair, or do anything else that makes you feel like more like a human being and less of a crazed parent might make all the difference when it comes to resetting your mind and body. Practice self-care: Along the same idea as the few human minutes, it’s also important to practice self-care. Rejuvenating our minds can help reenergize our whole being and body. It may seem hard to practice self-care while being a parent, however, the two don’t have to be exclusive. While it’s great to have activities that you do on your own, like yoga or an exercise routine, it’s just as beneficial to participate in activities that bring you joy that you can share with your child. For example, reading a favorite book together, binge watching a show, or playing a board game are all things that might fall under your definition of self-care, while still involving your kids. Enlist support: No parent can do everything completely on their own, especially when living with a chronic, demanding condition. Creating open lines of communication with those you trust may be helpful in creating a support network that can step in when you’re in need. For example, if you know that you won’t be able to play catch outside for an hour every day, you might be able to ask a spouse/partner, friend, or other family member to step in for you if they’re nearby. If your child goes to an activity with others they know, you might be able to tell another, trusted parent what you’re going through in the event that you need to skip a game and need help with coordinating a ride home. There is no shame in asking others for help when you’re in need so that you can get rest or prevent yourself from overexertion that may take days to recover from. Navigating life as a parent and with fatigue are two challenging tasks on their own, but can feel overwhelming together. There is no right or wrong way to parent, just like there’s no right or wrong way to manage fatigue. Let us know if you have any suggestions for parenting while managing fatigue that help you get through each day. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] ,When I was suffering with endometriosis, I was like the proverbial frog in the boiling pot. Endometriosis slowly took over my life, and I had no idea how bad things had become until I had a hysterectomy to treat it. Endometriosis doesn't just impact you during the "time of the month". Sure, the most common sign that you are suffering from endometriosis is painful, heavy periods, but it doesn't stop there. Left unchecked for too long and the endometriosis spreads throughout your whole pelvic cavity, causing pain on a daily basis. Add to that the chronic fatigue and you can see how living with endometriosis becomes a miserable existence. During the last years when my endometriosis became really bad, I lied to myself. I was afraid to seek medical help, because doctors had been dismissive of my pain ever since I first complained about it. I made myself believe that things weren't that bad, and that I could manage to live with it. Until I was in serious pain every day and a radical approach became inevitable. Two years ago I had a full hysterectomy. A few weeks into my recovery I was astonished at how great I felt. And what was more, my husband and children remarked on how different I was. I was happier, more optimistic, full of energy (even though I was recovering from serious surgery). I didn't snap at the kids anymore and even before I was fully recovered, I craved sex. I didn't realise how much of an affect my illness had on my relationship with my husband and kids until I was free of endometriosis. My relationship with my husband is now so much better and my kids are a lot happier and relaxed around me. It pains me to realise how much I missed out on during the years I was suffering and I wish I had sought treatment sooner. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] There are so many unanticipated aspects of parenting. Having to figure out how to parent while in pain was something I hadn’t given much thought to before I had kids. When my endometriosis symptoms returned after birth, I suddenly realized that I would have to learn how to balance chronic pain management with family (and all other) responsibilities. I could no longer just lay down, slow down, or walk away if I needed to. It wasn't easy to do this before kids, but now I have more people relying on me to be there during the difficult times. Some challenges There are definitely days when parenting while in pain feels intolerable. My mood is more negative, I have fewer cognitive resources, and my physical activity is limited. All of that can make me less patient and kind, even with those I love the most. Knowing that I am going to be experiencing endometriosis symptoms affects what I can do with my kids. For example, will we be close to a bathroom (and will I be able to manage all 3 kids in the bathroom with me!)? Will we be on our feet too much, or not enough? I have to think about whether there will be a place I can sit and rest if I need to and what my kids will do during that time. [native] My kids are aged 5, 5, and 2.5, so I’m sure this will change as they get older. But right now, being out and about while experiencing endometriosis symptoms takes a lot of planning. Despite the hardship, as with many other challenges, having to manage pain in the throws of parenting presents opportunities such as learning new coping skills and demonstrating adaptive coping for my kids. The importance of planning First and foremost, planning as best as I can has been really helpful for me. This actually starts with tracking my period (using an app), so that I know when my symptoms are likely to flare up. I use this information when planning activities or before making commitments. I take a look at where I am in my cycle and where I will be for the event. If I can’t think of a reasonable plan to handle my symptoms during that activity, I plan something else, or simply say no. I also try to be creative about what activities I can do while experiencing symptoms, and try to dismiss the guilt I sometimes feel for what I cannot do. There are some days we will need to choose puzzles, books, and coloring instead of dance parties and long walks. I will sometimes need to be the play observer instead of taking on the role of superhero. The effect of self-compassion Another tool is practicing more self-compassion, which does not come easily to me. Mindfulness meditation has helped me a great deal with this process (I love the Calm app!), and trust me, I’m not perfect at it. But I’m really trying because I know that meditation helps give me the fuel I need to get through the parenting challenges. I’m also finding it helpful to communicate how I’m feeling to my kids. I’m hopeful that when I tell them how I’m feeling and what I need, it helps them know that it is good for them to tell people how they feel and what they need. I want my kids to know that it’s good to take care of yourself. I need to do the same if I want them to believe it. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Endo Challenges: Parenting, Family Life, & Chronic Illness

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The Pain My Loved Ones Feel

Parenting and Fatigue

Endometriosis affected my relationship

Parenting While in Pain

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Talking to Your Children about Endometriosis

Seven Tips for Parents

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