Steph Cullen

@divamumsteph | contributor
Steph is a mum of one, and expecting her second child whilst living with Fibromyalgia, Chronic Migraine, PMDD as well as a range of secondary health issues, including anxiety disorder. Steph blogs about chronic illness, parenting and mental health on her own blog over at www.divamumsteph.com From Bristol UK and living with her daughter, husband and dog Frank, Steph is an avid reader, aspiring author and self confessed over sharer and over swearer.
Steph Cullen

What Not to Say to Someone Who Is Chronically Ill and Pregnant

Most comments we make to pregnant individuals are made out of kindness, but they aren’t always received that way. The reason for this is something I feel should be obvious — because we don’t know what that person is going through, in pregnancy or otherwise. It’s usually best not to make comparisons or assumptions when it comes to chronic illness, but especially if the recipient is pregnant and struggling emotionally or physically, they might not perceive your response in the way it’s intended. 1. “Don’t worry, I didn’t glow in pregnancy either.” It’s fine to say to someone that you had a difficult pregnancy. It’s OK to relate to what they’ve expressed, but if they tell you they’re struggling, don’t tell them you “didn’t glow either.” Firstly, it implies the person isn’t glowing (a little rude) and secondly, unless they’ve explained their situation and it’s the same as yours, you’ve probably had different experiences. Not glowing isn’t the same as experiencing extreme pain because of chronic illness. You can empathize without using comparisons. 2. It’ll be worth it in the end. This is my least favorite and it’s one used most often. Most people who are pregnant know that it’s worth it. We know when we make sacrifices during pregnancy that it’s for the good of our baby; we know once we have our baby it’ll be worth it. However, those who are chronically ill and pregnant make many sacrifices, including reducing and stopping medication they need, in order to give their baby the best start. They are also prone to more complications in pregnancy, which means there’s a strong possibility that there could be complications present you aren’t aware of. To use a generic term like “it’ll be worth it” before knowing someone’s story may inadvertently invalidate their struggle. 3. “As soon as you hold your baby, you’ll instantly forget all of the pain of pregnancy.” Many people with chronic illness experience pain every single day. Our mental health is often affected as a result too. We don’t get the luxury of forgetting what it feels like. Yes, our bundles of love, our children, can make it all seem worthwhile, but to suggest we just forget isn’t true for everyone. 4. “The rush of love you’ll feel once you’ve given birth is like no other.” Stop! It’s suggested around 1 in 7 people are diagnosed with postpartum depression in the year after giving birth. The likelihood is a lot more suffer but don’t get an accurate diagnosis. To suggest everyone feels a rush of love as soon as their baby is born is damaging to those of us that don’t feel it instantly. It’s one of the reasons many feel ashamed to admit that it didn’t come easily to them. Another reason this is damaging to people with chronic health conditions is that we often already feel like we have to hide how we really feel to make others feel less uncomfortable. Some of us may be in too much pain initially to bond with our baby instantly. Some experience extreme anxiety after giving birth, and many take longer to adjust to parenthood. It’s not to say the love doesn’t come, but it’s not as always as instantaneous as this comment would have us believe. 5. “Wow, that’s a big bump.” I’ve had to stay on bed rest since 14 weeks gestation. I’ve put on a lot of weight because I’m not moving. I’m aware of this; I’m also conscious of it. I don’t need it highlighted to me by way of a flippant comment. In my first pregnancy, I was immobile from 16 weeks too. I also experienced preeclampsia which caused me to retain large amounts of water. I looked like a beach ball; even my hands and feet were puffy and my face was as round as a full moon. Never did I appreciate having that highlighted to me. 6. “All women go through this.” They don’t. Not all women will be juggling the full-time job of growing a healthy baby whilst also managing chronic and debilitating health conditions. Not all women become completely immobile as a result of their pregnancy. It is true that many people experience ill health during pregnancy. It’s also true that many enjoy pregnancy and feel well. Again, stop comparing. Period. 7. “What medication are you taking?” Mind your business. Some people will have natural pregnancies and some will depend on medication to function and in some cases survive. We don’t need your judgment or to give you an explanation. It’s a hard enough task trying to decide what to do for the best when managing ill health and pain during pregnancy. A bit like those who choose to have natural births without pain relief, it’s not for anyone else to decide how someone chooses to manage pregnancy and birth. It’s their decision alone, in consultation with medical professionals, not with the general public and not even with close friends unless they choose. Supporting a chronically ill person can be hard and nobody expects you to know the right thing to say all of the time, but it’s OK to say nothing, or to ask questions instead of trying to provide solutions. The same goes for parenthood; we all experience it differently. Some people will be aware early on of complications with their pregnancy, they may want your support or they may want to deal with it in private. Ask them! Don’t tell someone how they should or will feel, because you don’t know either to be true. Offer up your support, tell them you’re there if they need someone to talk to and let them know you support their decisions. If your friend does decide to open up, look up their health condition and research the complications they share with you. Don’t compare someone else’s pregnancy to yours. No two are the same.

Steph Cullen

The Unpredictable and Debilitating Nature of Migraine

I have started writing this so many times. It’s so hard to put into words the debility of a migraine, without it sounding like a bad headache. So I thought long and hard about how I would explain migraines in this story. I really wanted you to be able to feel what I’m trying to say, so here goes. It may start off fleeting, a small dot in your peripheral vision, a barely noticeable shadow that casts a darkness over tired eyes. Maybe it’s more aggressive with flashing lights, and in some cases temporary loss of vision. You might feel a sickening in the pit of your stomach, coming from nowhere and catching you unawares, making your mouth water. You may be struck down by overwhelming fatigue that leaves your body feeling laden as though immersed in treacle. Or maybe your jaw starts to hurt from clenching. Maybe you have a pain deep set behind your eye trailing up over your skull and down your neck. Maybe your period is due, maybe it isn’t. Maybe you ate cheese, forgetting it’s a possible trigger, or maybe you didn’t. You take yourself off to bed with the view to recover within hours. Painkillers line your bedside table and you take each one in turn at the first sign of the migraine. You lie down, dizzy and unable to sleep from the pain, which has now gotten so bad that all light and noise must be eradicated immediately. An ice pack lies across your forehead not quite reaching the painful parts. A few hours pass and you wake up, rush to the loo to be sick, or sit up and are so dizzy you need to lay back down. You’re shaking, you feel like you’re hungover from 10 JD and Cokes, except even a hangover from 10 JD and Cokes would be preferable to this shit show of pain you’re feeling. You are unable to distract yourself. The only thing to do is lie there some more, phone in sick at work, cancel any plans you made by forcing yourself to pick up your phone, even though it hurts your eyes as much as looking at direct sunlight. Rattle off a text of apologies for having to cancel on your pals again, only to get one back saying “you wouldn’t be on your phone if you had a real migraine, it must just be a bad headache.” The day passes in a blur; you cannot eat, you cannot sleep, you cannot watch TV or read, and you genuinely wonder how much more of this you can take. What if it never ends? What if today is the day you don’t recover from this pain and have to live with it indefinitely? You feel shaky, your skin is greasy, and your heart rate has sped up to a rapid crescendo. Anxiety causing the pain in your head to worsen again. That hangover feeling leaves you exhausted, thirsty and drained, so drained. Your stomach feels as though you’re seasick and the thought of leaving the house is too much effort. Your doctor advised preventative migraine treatment, so you take four pills every night of your life in hopes it will prevent the migraine occurring at all. You get a piercing that promises a quick fix and for a month or so your migraines reduce, but they are not gone. Oh no, they are never gone. When you’re tired, when your period is due, when you drink too much caffeine and also when you don’t drink enough. If you miss a dose of those sacred pills. Just about anything can be a trigger to be honest, and you wish fleetingly that someone else would feel this pain so they could understand it. It’s impact. The catalogue of symptoms that are so debilitating, so soul crushing, so unpredictable and so much more than just a headache.

Steph Cullen

To My Friends and Family Who Don’t Have Fibromyalgia

Hey, Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it gets old, boring even, to hear me talk about it All. The. Time. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is, I’ll always have this condition. A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathizing, I’m learning to be OK with that. I have to be. Yes, it hurts my feelings, even when I don’t tell you it does, and again when I do. It hurts my feelings when you ignore the honesty of my illness-related posts, and only engage in the cute pictures of my kid. It hurts when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything. You see, this illness makes me irritable. I get angry with my body, often. On some days, better days I might seem totally “normal.” I might even resemble “the old me,” but please know that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today might affect me tomorrow or for days, sometimes weeks after the event. I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you I’m not doing is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterward. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me. I am not broken, I’m just bent, learning to live again (almost a quote from a P!nk song there). Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you that I’ll always be able to fulfill them. Just know, when I make them, it’s always with the best intentions. I’m trying new ways to manage this condition all the time. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am. I wish I could go back in time and do more things with you before I got sick, but sadly time traveling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain. If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before. If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one.

Steph Cullen

To My Friends and Family Who Don’t Have Fibromyalgia

Hey, Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it gets old, boring even, to hear me talk about it All. The. Time. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is, I’ll always have this condition. A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathizing, I’m learning to be OK with that. I have to be. Yes, it hurts my feelings, even when I don’t tell you it does, and again when I do. It hurts my feelings when you ignore the honesty of my illness-related posts, and only engage in the cute pictures of my kid. It hurts when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything. You see, this illness makes me irritable. I get angry with my body, often. On some days, better days I might seem totally “normal.” I might even resemble “the old me,” but please know that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today might affect me tomorrow or for days, sometimes weeks after the event. I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you I’m not doing is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterward. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me. I am not broken, I’m just bent, learning to live again (almost a quote from a P!nk song there). Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you that I’ll always be able to fulfill them. Just know, when I make them, it’s always with the best intentions. I’m trying new ways to manage this condition all the time. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am. I wish I could go back in time and do more things with you before I got sick, but sadly time traveling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain. If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before. If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one.

Steph Cullen

To My Friends and Family Who Don’t Have Fibromyalgia

Hey, Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it gets old, boring even, to hear me talk about it All. The. Time. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is, I’ll always have this condition. A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathizing, I’m learning to be OK with that. I have to be. Yes, it hurts my feelings, even when I don’t tell you it does, and again when I do. It hurts my feelings when you ignore the honesty of my illness-related posts, and only engage in the cute pictures of my kid. It hurts when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything. You see, this illness makes me irritable. I get angry with my body, often. On some days, better days I might seem totally “normal.” I might even resemble “the old me,” but please know that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today might affect me tomorrow or for days, sometimes weeks after the event. I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you I’m not doing is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterward. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me. I am not broken, I’m just bent, learning to live again (almost a quote from a P!nk song there). Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you that I’ll always be able to fulfill them. Just know, when I make them, it’s always with the best intentions. I’m trying new ways to manage this condition all the time. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am. I wish I could go back in time and do more things with you before I got sick, but sadly time traveling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain. If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before. If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one.

Steph Cullen

To My Friends and Family Who Don’t Have Fibromyalgia

Hey, Thanks for being you, for listening, watching, reading and learning about my condition whilst riding this wave with me. I know it’s been years now. I know it gets old, boring even, to hear me talk about it All. The. Time. Part of me is sorry, though I’m not sure I’ll ever stop, because the thing is, I’ll always have this condition. A few people have dropped off along the way, stopped asking, stopped listening, stopped sympathizing, I’m learning to be OK with that. I have to be. Yes, it hurts my feelings, even when I don’t tell you it does, and again when I do. It hurts my feelings when you ignore the honesty of my illness-related posts, and only engage in the cute pictures of my kid. It hurts when you ask me how I am and I’m honest about how I’ve been feeling and you don’t reply. But, I do think about how hard it is to be around me sometimes, how difficult it can be to know what to say. With that in mind, I’m grateful if you’re still here, even when it might seem like I’m not grateful for anything. You see, this illness makes me irritable. I get angry with my body, often. On some days, better days I might seem totally “normal.” I might even resemble “the old me,” but please know that I am never not thinking about how this illness impacts my life. I am never not considering how activities like having fun with you today might affect me tomorrow or for days, sometimes weeks after the event. I still want to do all of the fun things you suggest and sometimes I’m able to, but there will be days when I need to cancel last minute. There will be times when we are out together that you might roll your eyes because I can’t walk back up the hill we just descended, or I can’t come and dance with you when our song comes on. I’m rolling my eyes at me too. I’m annoyed at my body too. What I can promise you I’m not doing is faking it. There is never a time that I want sympathy more than I want to have fun. Believe me when I tell you that, because it’s important you understand, this illness is real. It’s also interchangeable, it’s sporadic. It could be down to the last minute that I am living it up and having the best time then crashing in bed for days afterward. This is partly why I’ve pulled back from making plans. Pulled back from committing to things. This is why I’ve not reached out to ask if you want to do anything for ages, because I fear that if I do, and then I become suddenly unable, you will think I’m flakey. You might start to resent me, and drop off the radar with the rest of the people that couldn’t fix me. I am not broken, I’m just bent, learning to live again (almost a quote from a P!nk song there). Please know that I still want to be included in your plans and I still want to include you in mine. I just can’t assure you that I’ll always be able to fulfill them. Just know, when I make them, it’s always with the best intentions. I’m trying new ways to manage this condition all the time. I’m always trying, to be better, to do better, to make better choices that will benefit me and ultimately our relationship in the long run, even when you might not think I am. I wish I could go back in time and do more things with you before I got sick, but sadly time traveling isn’t a side effect of chronic illness. Though it’s hard for you to see me like this, though I’m hard to be around sometimes, I am a better, more compassionate and caring friend because of my illness. Of that, I am certain. If in the past I’ve rolled my eyes at your struggles, I’m truly sorry. If I seem lacking or caught up in my own life, I’m sorry for that too, because I do care. I don’t have all the answers, I don’t have all the solutions – but I still care. More compassionately and with more integrity than I’ve ever cared before. If you’re still here – thank you and if you’re not, I understand. Letting go is something I’ve had to get used to, and it’s something I’m trying to do without resentment. We all have to look after ourselves and sometimes that includes making changes and protecting ourselves from negativity, including negative people, and whilst I do feel like I am a good and loyal friend, I’m fully aware I’m not always a positive one.

Steph Cullen

Premenstrual Dysphoric Disorder and Pregnancy

April is premenstrual dysphoric disorder (PMDD) awareness month and it’s something I’ve not talked about much since becoming pregnant again. PMDD directly corresponds with your menstrual cycle, so in theory you should gain relief during pregnancy. However (and this is merely my personal experience), since PMDD causes an abnormal reaction to normal hormonal changes, whilst you may receive some relief during pregnancy, it’s possible you still have a sensitivity to hormone fluctuations. As has been the case for me. Some symptoms are worse than ever before, particularly migraine and feelings of hopelessness. The first trimester is often the worst for lots of pregnant women even in the absence of PMDD; the severity in hormonal changes tend to happen early in pregnancy and level out as your body becomes accustomed. It’s also thought that women who struggle with postpartum depression may be at further risk for developing PMDD. I can concur that the dip in hormones post-pregnancy deeply affected me the first time around. With PMDD, age is another factor that effects the severity in symptoms for me personally. The older I get, the worse my symptoms become. Often it has been the case for me where hormonal therapy such as contraception will provide short term relief, only to later stop working with no rhyme or reason. Antidepressant medication can also help manage symptoms, but again, long-term they often need changing, and finding the right type and dosage is a lot of trial and error. After menarche, my PMDD was prominent, but back then at the age of just 11 nobody took my severe mood fluctuations seriously. At 13 after attempting suicide I was prescribed antidepressants. It was only later when I started recording my depression and severe mood swings that often included rage and toxic outbursts that I made the connection between them and my periods. Growing up, soon after enrolling in primary school and before menstruation, I was diagnosed with the hormone imbalance premature adrenarche (PA). Though there is no proven scientific connection between PA and PMDD, I feel this was all part of the same affliction; sensitivity to hormone changes affect me in a major way. PMDD shouldn’t impact pregnancy in the sense that it alone won’t impact your ability to conceive. However, trying for a baby whilst managing PMDD can be difficult, especially if you’re taking contraceptives to manage your symptoms, and or antidepressants. Some of the more favorable SSRI’s for PMDD treatment are not recommended for pregnant women, and therefore you may be asked to switch to a safer antidepressant or come off of them all together. This in itself can be a life-altering (and in some cases life-threatening) change that could impact your mental health during pregnancy too. If your PMDD is severe and not responsive to treatment you may have considered sterilization, which of course can put added pressure on you if you want to conceive. You might feel like you’re running out of time or you might feel forced to make the decision not to have children at all in order to manage your condition. Though classified as a mental illness, PMDD has many physical symptoms including joint paint, migraine and profound fatigue, which can often be mistaken or overlap with other illnesses. In my case my fibromyalgia is much worse when PMDD strikes, and I know many others often get diagnosed with secondary conditions as a result of living with PMDD too. Looking after your mental health must alway be a priority including during pregnancy, but it’s scary when you’re offered conflicting information and promises of symptom relief aren’t helpful either. “At least you get a break from PMDD” is one of the most useless reassurances I’ve ever heard. Surely we know by now that even those of us with the same diagnoses will experience symptoms differently and bodily changes will impact us all in different ways. Pregnancy is one of the most obvious examples of this. Some women barely know they’re pregnant at all and others (like myself) find the process insufferable. What’s important when considering all factors is finding a healthcare practitioner that is aware of your diagnoses. If they aren’t up to speed on what it means, they need to be willing to learn. When I found out I was pregnant this time I specifically asked to be cared for by the perinatal mental health team. This has included regular discussions with a mental health consultant who specializes in reproductive health. It’s been invaluable for me to know I have people on my healthcare team who understand and are knowledgeable in helping me look after myself during pregnancy. My most recent appointment with the consultant included discussions around further specialist referral for PMDD post-pregnancy, and also the need for me to be prescribed antidepressants again postpartum. Even if I don’t feel I need them, I have a prescription ready and a doctor who is helping me monitor the impact. Pregnancy is hard on our bodies, buts it’s equally as hard on our minds, and when you are prone to mental health problems or live with a mental illness already, specifically ones prone to intensify with hormone fluctuation, the need to receive the right healthcare is critical. The International Association for Premenstrual Disorders has a directory that can help you find doctors in your area who specialize in PMDD, so do check them out.

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Why I Did Not Try Breastfeeding and Felt No Guilt

I want to start this blog, by going ahead and saying that I am not discouraging breastfeeding. I admire women who are able to successfully, because it is hard. If you think you and/or your baby get some benefits from it that make it worth it, then more power to you, and if you love doing it, even more power to you! However, formula is often presented as some horrible last resort back up choice. First of all, before formula was invented, babies often starved to death, because women tried, and either could not breastfeed or could not produce enough milk. Formula saves lives. Formula is also better made now than it was even then. My daughter is almost 13 and is smarter and healthier than average. The only benefits I feel I may have missed out on by not breastfeeding is the bonding and possible health benefits for myself. I often wonder if doing so might have helped prevent my postpartum depression, which would of course also have benefited my daughter, and husband and everyone else around me, but I know many women who breastfeed who got postpartum depression as well. In many of those cases, the stress of breastfeeding even contributed to it. So, you can get postpartum depression whether you breastfeed or not, but I am currently trying to get pregnant again and would at least consider trying it next time. You know if I do try it, you will see my experience in a blog and/or my next book. My general doctor and OB-GYN have both assured me my OCD and anxiety medication is still safe to take while breastfeeding and pregnant, if needed at those points. If it did start to take a toll on my mental health though, I would not hesitate to stop for the sake of my child, myself and again, everyone else around me. There is no benefit breastfeeding offers that I feel trumps the mental health of the mother, but I have seen mothers sacrifice their mental health to accomplish it for a certain amount of time for some reason. Maybe they see more benefits than I do, or maybe, it just due to societal guilt or guilt from those around them. Before I had my first child, I had been around other women breastfeeding and they always seemed to stressed out. Even being around them trying to do it stressed me out. It gave me so much anxiety that I did not even try it. I can honestly say no one gave me a hard time about it. My doctor and hospital never said anything about it and were very supportive of us bottle feeding. Maybe it was because I told them it was due to anxiety, but my family, husband and friends were supportive as well. Although I would not realize until my daughter was two years old, just how severe my OCD and anxiety were, I knew that I had some OCD and anxiety symptoms. At the time, I just knew for me, that not breastfeeding felt like the right decision. I came home from the hospital looking like Pamela Anderson. Thanks to advice from my sister, based on what she did when she was done breastfeeding, I put a bunch of pads under a sports bra, and wrapped a lot of cloth bandage or tape around it I believe, very tightly to prevent pain. As I just typed that I realized that the hospital never advised me on that. I did not ask either, but of course I did not think to in the midst of everything. Another benefit to bottle feeding was that my husband, or anyone else could help at any time. Some who breastfeed also pump to get this added benefit as well as other benefits. I would have had to pump to return to work like I did when my daughter was 12 weeks. One perk of breastfeeding over formula can be the money saved, but that depends on how many breastfeeding products you buy, like a pump for instance. If you google breastfeeding products, you will quickly see how quickly they can add up. With the next child, I would even consider trying cloth diapers. I know I would still probably use the disposables some at times, especially for travel or for daycare, etc. but those are something else that has improved over time. You have to invest some money initially to get some really nice ones, but still overall you can still potentially save a lot of money, and the environment in the process. Watch out for a blog on that in the future as well.

Steph Cullen

What's It Like to Be Pregnant and Chronically Ill?

Lonely. Because everyone experiences pregnancy differently and when you’re more worried than you are excited, people think you’re being negative. Hopeful. Because hope is all you really have. We can’t change the future or the past but we can hope for better. To get excited could mean to jinx it. I don’t want to rave about how excited I am when I still can’t fully envisage a happy ending. Only another four and a half months to go, I can do this. Oh shit another four and a half months left of this, I can’t do it anymore. What does high-risk mean? Different things for different people, even pregnancies for mums without underlying health issues come with environmental risks. Sometimes the risk will be more prominent for the mother and sometimes for the baby. But risk factors can be present for both. What does it mean in my case? For me, it’s meant the risk of long-term immobility because my Symphis Pubis is at risk of rupture and I can no longer walk. It means another four and a half months minimum of immobility to go. If the SP ruptures it could mean further more extreme long term disability, loss of mobility, incontinence and need for surgical intervention. Preeclampsia. You are more at risk of preeclampsia if you had it during a previous pregnancy, which I did. I have had also high blood pressure throughout this pregnancy along with chronic migraine. Migraine can be an indicator of preeclampsia and I’ve had one every three to four days for the last 22 weeks. So you can imagine the worry is ongoing, and the risk of early onset preeclampsia is higher. Survival rates for babies increase significantly if preeclampsia is developed later in the pregnancy. Withdrawal. One in 3 babies exposed to medication in utero are at risk of being born with Neonatal Abstinence Syndrome (NAS). Ciara was born with NAS from antidepressant medication. I no longer take antidepressants, but I still take medicines that I need to be able function medication that I will be on for the rest of my life in all probability. I take more medicines than I was taking when pregnant with Ciara so our risk is already much higher this time. Underlying health conditions. Though fibromyalgia and migraine don’t directly impact the baby during pregnancy, the reduction in medication along with hormonal changes exacerbate symptoms drastically, and I have spent the last 22 weeks in pain, every second of every day. There are no “good days.” We are getting good hours and that is the best we can hope for. We know pregnancy is impacting my health, but we don’t know what it means long-term. When you tell me it’s not forever I am reminded of how long I have left to go being unable to walk, dress myself and cook, and that actually as a functional human being I was already struggling. A positive mindset is very difficult to hang onto when you lose your sense of self through physical disability. Your mind knows what’s going on, but your body doesn’t do what you want it to.When you tell me you’re excited for me I’m reminded of how scared I am. I’m reminded that I too should be excited, instead I’m fearful. When you ask how’s the baby? I’m reminded that I’m their house and I don’t know really how they’re doing, not really, because until they are here and in my arms I won’t know if all of the above risks have impacted their development. I wish you would ask me how I am instead because that’s a question I can answer. But when you do and I’m honest I feel like it’s the wrong answer and I’m a burden, so again I feel forced to stay optimistic about something that scares me. It’s been 22 weeks of anxiety, worry and physical disablement for me and though we have hope, hope is still all we have. Nobody knows what to say so they stop saying anything at all, and some might question why I even bothered to get pregnant in the first place if all I am going to do is complain. But my complaints are not born out of a dislike for pregnancy. They aren’t because I don’t want my baby. They are born out of fear and worry and the inability to fix a broken body. They are born from exhaustion, and guilt and trauma. I do need help, but I won’t ask family and friends for it because it makes me feel like more of a failure and because I know that every single person in the world right now needs something. I know that people are all going through stuff, maybe worse stuff like dying and losing loved ones and everybody’s mental health is in a state of decline, so what makes me special? Nothing. So why am I speaking up? Why don’t I do my wallowing in private? Because I still want to feel connected. Because I don’t want to be the person who suffers in silence anymore. Because if it was my daughter going through this I would want her to feel able to open up in whatever form that helped her, and incase you’re new here. Writing is what helps me. Today we found out the gender of our baby, and all I could think was at least they’re alive. Grief does not only come from loss, I am grieving the excitement I want to feel, I’m grieving the process, and I’m grieving past pregnancy and birth trauma that still haunt me vividly whilst I wait for the arrival of my second child and hope that when they get here I will be strong enough to keep them safe. I am grateful that we have gotten this far, and I am hopeful that will get us to the end. I’m grateful for a little girl who can’t wait to find out if she’s having a brother or sister and who has enough hope and excitement for all of us.