Alizabeth Worley

@alizabethworley | contributor
Alizabeth has Chronic Fatigue Syndrome and her husband, Michael, has Cerebral Palsy. They have two kids. Sometimes they tell stories. You can find them at https://www.youtube.com/channel/UC-8GWqVSirsJP2R6tfwGRhQ.
Steffie S

Dealing With Exhaustion, Skepticism and a Fibromyalgia Diagnosis

I came home from school, and I lay down on the sofa. At 8 years old nobody thought this was odd. I was told to go to my bed, which I did, and the pattern began. I was exhausted after school each day, so I would go home and crawl into bed for an hour before dinner. I was taken to the doctor by my mother, not about the tiredness, but about my aching knees and elbows. The doctor told my mother it was nothing to worry about, just growing pains. After I moved to high school, the long walk to school exhausted me before the day had even started. At lunchtime, I would occasionally go into the textiles  room and fall asleep instead of going outside. The head of the department was very understanding and told me to rest as much as I needed. It got to the point where I would crawl onto the racking of the material stock room and cover myself with material and fall asleep in comfort. The bell would sound for end of lunch and wake me, and my afternoon would begin. Sometimes I was able to do extra curricular activities after school, but as the school term  progressed, so would my tiredness. Once school ended, I had my long walk home. I would get straight into bed when I got home and sleep for an hour or two before I got up to eat dinner and do homework. If I didn’t have any homework, I would sleep through until the next morning. None of this worried my parents. I was just a lazy teenager. While I was taking my exams in my final year, I visited a friend’s house. I started getting a migraine, so I left their house and headed home. As I walked back, my limbs became heavy and I struggled to walk, the sun was so bright, and I had begun to get dots in my eyes. I did not think I would make it the short distance home, but I did. I crawled into bed and covered my head. I called out for my mother who was not even there. My father told me to be quiet. Eventually my mother came home, and all the family were sent into a spiral of panic as mum realized just how ill I was. A doctor was called for and he examined me. My limbs were heavy and all joints painful, the light too bright, my head  feeling like it was exploding. I could not move my head as my neck was stiff and painful. After a few tests, the doctor diagnosed me with viral meningitis. I was kept drugged asleep and only woken to take in fluid and food. I attended college and the same pattern emerged. I danced but my knees were so painful and swollen that, by Monday, I could not get to college. When finding employment, I was great for the first few months, but then I became so exhausted that I could not manage a full week. This caused issues at home as I was not considered to be ill, but that I just had time off work. I was lazy, I was making up the pain for attention. By all accounts, it was all in my head. While I was working, I met my friend for a Christmas drink as we had broken up from work for the holidays. We spent a couple of hours together and then caught the bus home. We agreed to meet at 8 pm to go out for the evening together. As I got home, my parents were going out. I said I would meet them at around 7:30 before meeting my friend. Once they had left, my head, once again, felt like it was going to explode. I went to lay down for a few minutes, in the hope that it would get better. It didn’t. It got worse. I was alone, I was in agony, and I could not move to get near the telephone. I drifted in and out of consciousness from 7 pm until 11:30 pm when my parents came home. My father came to find out why I had not gone out, and upon seeing the state I was in, called for my mother. I was the same as before, so an ambulance was called. I spent a few days in hospital and a lumber puncture. I had viral meningitis. No explanation was given. I was sent home to recover. This was four years since the first episode. Fast forward a few years, and I became a mother. Being a mother to a newborn, I slept when she slept (much to my husband’s dismay). As she grew and did not require an afternoon nap, I would ask if I could go for a lay down, just for an hour or two. I was exhausted, and my husband would get angry and say awful things, but I could not carry on without a rest. I had three daughters under 3 years old. I was their main care giver. All day. Every day. I never went out or had any down time, apart from sleep (when I could and suffer the verbal abuse for doing so). One evening, I was putting up a blind at one of the windows, and as I stood on the ladder, I noticed that I felt dizzy. I quickly climbed down and made sure my girls were all OK. I stumbled out onto the landing and slid down the wall. I luckily had the house phone in my pocket and managed to press speed dial for my parents, but my voice was garbled. Within 10 minutes. they came to my house. I was taken to hospital and treated once again as though I had meningitis. The pain was the same as the two episodes before. I was given the tests for photophobia. and all my joints were sore, my neck stiff and I could not move it. A lumber puncture was given again and, once again, came back clear. For the third time in my life, I had viral meningitis but was sent hone to recover with no explanation. This even was four years after the second event. I could not go continue in the relationship with my husband as it was. It was heavily one sided, and I felt like a failure. I could not be a mother, the housekeeper and wife I was expected to be without the help and support of my husband. He worked, but he also went out at night five nights a week and left me alone with the girls. I made the decision to leave. Within two months of me leaving I was admitted to hospital again with suspected meningitis. This time I was in hospital for two weeks. I lay in bed with a wet towel over my eyes and did not move. I didn’t feel hungry and ended up having a catheter and being drip fed. My mother kept asking the doctor what was wrong with me, but they only told her that the latest test had come back clear or negative. As the two-week mark approached, my mother was told that I had fibromyalgia. I would be going home. There was nothing more they could do but manage my pain. That was four years after the third event. I had fibromyalgia and struggled daily with the pain and constant ridicule from my ex-husband that I was “sleeping again” if he came to collect the girls and my mother was watching them. My mother was not convinced anything like fibromyalgia existed, as during her nurses training, there was no lecture she attended or case she had seen that mirrored mine. My mother kept telling me it was psychological. She told me I had to pull myself together or social services would take my girls away, unfit to be a mother. That was over 20 years ago, and a lot more is widely known about fibromyalgia today. However, it is still not a condition that everyone has heard of. My mother now believes in the condition as my niece and my cousin both have it. I now know that this disbelief from my own mother caused unnecessary stress. After being told day after day that I was an unfit mother and that I was struggling with something psychological, I began to believe them. This probably added to the symptoms and delayed any recovery. I was afraid someone would take my children if I admitted I was ill and needed help. I was utterly exhausted and cried myself to sleep so much when the day was done. I was lucky that my girls went to sleep early and slept through as I managed to get some rest, but I was always exhausted. As my daughters have grown up, they have become my biggest advocates. I now listen to my body, and my girls look after me. They often look at me, see I am struggling and order me to bed to rest, as I often try to do more that I should. Fibromyalgia and its symptoms differ from person to person and, although fibromyalgia is getting some recognition by the medical industry, there are still the non-believers that don’t know enough to comment but they continue to do so, their comments cutting and damaging. Those who live with fibromyalgia do not choose to feel this way. They are not pretending to be sick, they are pretending to be well! All too often they put on a mask that hides the pain and people believe this. I know because I wore my mask for so long, pretending to be well so that I can appear fine to all but my family. Please, if you can be anything, be kind. You never quite know what someone is going through.

Don't Call the Cops on People for Parenting While Disabled

The first time someone called the cops on Michael, he was pushing our 1-year-old son in a stroller. That’s it. Just pushing our baby in a stroller. They were close to our apartment and Michael struck up a conversation with two people sitting outside of a cafe. Michael has quadriplegic cerebral palsy, which affects his whole body, including how he walks and talks. His disability is visible, and because of that, people often assume that he is less capable or aware than he really is. I’ll never forget when we went to Disneyland and a well-meaning employee asked my husband, who had just passed the bar to become a lawyer, “Are you suuure you want to go on Splash Mountain? You might get wet, and then you could be verrry cold!” Most of the time, this tendency to underestimate Michael is relatively benign. Other times, it can be… let’s just say, problematic. I know the people who called the cops on Michael at the cafe didn’t mean any harm; they just wanted to make sure that a young child was being cared for adequately. But they could have talked to Michael longer, and even if they couldn’t understand him, they could have communicated in other ways. The second time someone called the cops, our now-toddler was having a tantrum about not getting an ice cream cone at the ice cream store they had walked by and briefly entered for a sample. Our little one was in full tantrum mode, with ruddy cheeks, thrashing and screaming. Someone came by, asked if everything was OK, and couldn’t understand what Michael said. In some ways, I feel a little more sympathetic to that person because, while our toddler is calm and happy most of the time, his tantrums tend to boil over and be intense. Still, he could have talked to Michael for longer than a few seconds. Instead, he called the police, who came and gave Jeffrey and Michael a ride the 100 yards or so home (we lived just a short walk away from the ice cream store). I told someone the day after about what had happened, and they said, “Well, I can see both sides,” implying that I didn’t have a right to be upset, or at least that the other person was acting reasonably. Their response still bothers me. Yes, I understand that the person who called the cops was not a bad person. But that doesn’t mean his response was fair or equitable. He could have tried to talk to Michael more. It was a quick and unnecessary escalation to calling the cops. I’m not willing to say that parents with disabilities are automatically being discriminated against when people check in on their kids, because sometimes disabilities can affect a parent’s ability to care for their children. That’s not a popular thing to say, but it’s been true for both me and Michael — if we didn’t have help, I don’t think we’d be able to meet some of our kid’s needs. I’m OK with people checking in a little. I’m OK with questions, though I think they should always be delicately put forward if you feel the need to ask someone, and I think that “just being disabled” isn’t a good enough reason for added scrutiny. Rather, if it seems like there is a specific lack, either in a parental duty being completed or in a child’s needs being met, then yeah, see if the kids are OK. If you are ever in the situation of seeing a disabled parent and feeling uncomfortable, then consider other able-bodied parents and what you’d be OK with for their kids. Are you OK with an able-bodied parent whose kids are in pajamas, or whose play clothes still have lunch on them? Even if you’d parent differently, if you’d be OK with other able-bodied parents doing something you see a disabled parent doing, then don’t worry about it. If you do reach out, do so with the intent of offering help; maybe a disabled parent is doing great in almost any way, but they have a difficult time getting the car seat in and out, or need help with a few cleaning tasks. Everyone needs a bit of help or support sometimes. Yes, there may be situations that require some kind of formal intervention, but the simple fact that a parent is disabled just isn’t one of them. Disabled parents deal with increased scrutiny on a regular basis, and adding to that doesn’t help. Fortunately, in the internet era, we can learn about all kinds of people and perspectives we might not have run into otherwise, and that’s as true for disabled parents as anyone! There are a lot of disabled parents out there, and most of them are pretty awesome. So if you ever see a disabled person with their kids out and about, chances are, everything is quite all right and they’re rocking it as parents!

Don't Call the Cops on People for Parenting While Disabled

The first time someone called the cops on Michael, he was pushing our 1-year-old son in a stroller. That’s it. Just pushing our baby in a stroller. They were close to our apartment and Michael struck up a conversation with two people sitting outside of a cafe. Michael has quadriplegic cerebral palsy, which affects his whole body, including how he walks and talks. His disability is visible, and because of that, people often assume that he is less capable or aware than he really is. I’ll never forget when we went to Disneyland and a well-meaning employee asked my husband, who had just passed the bar to become a lawyer, “Are you suuure you want to go on Splash Mountain? You might get wet, and then you could be verrry cold!” Most of the time, this tendency to underestimate Michael is relatively benign. Other times, it can be… let’s just say, problematic. I know the people who called the cops on Michael at the cafe didn’t mean any harm; they just wanted to make sure that a young child was being cared for adequately. But they could have talked to Michael longer, and even if they couldn’t understand him, they could have communicated in other ways. The second time someone called the cops, our now-toddler was having a tantrum about not getting an ice cream cone at the ice cream store they had walked by and briefly entered for a sample. Our little one was in full tantrum mode, with ruddy cheeks, thrashing and screaming. Someone came by, asked if everything was OK, and couldn’t understand what Michael said. In some ways, I feel a little more sympathetic to that person because, while our toddler is calm and happy most of the time, his tantrums tend to boil over and be intense. Still, he could have talked to Michael for longer than a few seconds. Instead, he called the police, who came and gave Jeffrey and Michael a ride the 100 yards or so home (we lived just a short walk away from the ice cream store). I told someone the day after about what had happened, and they said, “Well, I can see both sides,” implying that I didn’t have a right to be upset, or at least that the other person was acting reasonably. Their response still bothers me. Yes, I understand that the person who called the cops was not a bad person. But that doesn’t mean his response was fair or equitable. He could have tried to talk to Michael more. It was a quick and unnecessary escalation to calling the cops. I’m not willing to say that parents with disabilities are automatically being discriminated against when people check in on their kids, because sometimes disabilities can affect a parent’s ability to care for their children. That’s not a popular thing to say, but it’s been true for both me and Michael — if we didn’t have help, I don’t think we’d be able to meet some of our kid’s needs. I’m OK with people checking in a little. I’m OK with questions, though I think they should always be delicately put forward if you feel the need to ask someone, and I think that “just being disabled” isn’t a good enough reason for added scrutiny. Rather, if it seems like there is a specific lack, either in a parental duty being completed or in a child’s needs being met, then yeah, see if the kids are OK. If you are ever in the situation of seeing a disabled parent and feeling uncomfortable, then consider other able-bodied parents and what you’d be OK with for their kids. Are you OK with an able-bodied parent whose kids are in pajamas, or whose play clothes still have lunch on them? Even if you’d parent differently, if you’d be OK with other able-bodied parents doing something you see a disabled parent doing, then don’t worry about it. If you do reach out, do so with the intent of offering help; maybe a disabled parent is doing great in almost any way, but they have a difficult time getting the car seat in and out, or need help with a few cleaning tasks. Everyone needs a bit of help or support sometimes. Yes, there may be situations that require some kind of formal intervention, but the simple fact that a parent is disabled just isn’t one of them. Disabled parents deal with increased scrutiny on a regular basis, and adding to that doesn’t help. Fortunately, in the internet era, we can learn about all kinds of people and perspectives we might not have run into otherwise, and that’s as true for disabled parents as anyone! There are a lot of disabled parents out there, and most of them are pretty awesome. So if you ever see a disabled person with their kids out and about, chances are, everything is quite all right and they’re rocking it as parents!

Don't Call the Cops on People for Parenting While Disabled

The first time someone called the cops on Michael, he was pushing our 1-year-old son in a stroller. That’s it. Just pushing our baby in a stroller. They were close to our apartment and Michael struck up a conversation with two people sitting outside of a cafe. Michael has quadriplegic cerebral palsy, which affects his whole body, including how he walks and talks. His disability is visible, and because of that, people often assume that he is less capable or aware than he really is. I’ll never forget when we went to Disneyland and a well-meaning employee asked my husband, who had just passed the bar to become a lawyer, “Are you suuure you want to go on Splash Mountain? You might get wet, and then you could be verrry cold!” Most of the time, this tendency to underestimate Michael is relatively benign. Other times, it can be… let’s just say, problematic. I know the people who called the cops on Michael at the cafe didn’t mean any harm; they just wanted to make sure that a young child was being cared for adequately. But they could have talked to Michael longer, and even if they couldn’t understand him, they could have communicated in other ways. The second time someone called the cops, our now-toddler was having a tantrum about not getting an ice cream cone at the ice cream store they had walked by and briefly entered for a sample. Our little one was in full tantrum mode, with ruddy cheeks, thrashing and screaming. Someone came by, asked if everything was OK, and couldn’t understand what Michael said. In some ways, I feel a little more sympathetic to that person because, while our toddler is calm and happy most of the time, his tantrums tend to boil over and be intense. Still, he could have talked to Michael for longer than a few seconds. Instead, he called the police, who came and gave Jeffrey and Michael a ride the 100 yards or so home (we lived just a short walk away from the ice cream store). I told someone the day after about what had happened, and they said, “Well, I can see both sides,” implying that I didn’t have a right to be upset, or at least that the other person was acting reasonably. Their response still bothers me. Yes, I understand that the person who called the cops was not a bad person. But that doesn’t mean his response was fair or equitable. He could have tried to talk to Michael more. It was a quick and unnecessary escalation to calling the cops. I’m not willing to say that parents with disabilities are automatically being discriminated against when people check in on their kids, because sometimes disabilities can affect a parent’s ability to care for their children. That’s not a popular thing to say, but it’s been true for both me and Michael — if we didn’t have help, I don’t think we’d be able to meet some of our kid’s needs. I’m OK with people checking in a little. I’m OK with questions, though I think they should always be delicately put forward if you feel the need to ask someone, and I think that “just being disabled” isn’t a good enough reason for added scrutiny. Rather, if it seems like there is a specific lack, either in a parental duty being completed or in a child’s needs being met, then yeah, see if the kids are OK. If you are ever in the situation of seeing a disabled parent and feeling uncomfortable, then consider other able-bodied parents and what you’d be OK with for their kids. Are you OK with an able-bodied parent whose kids are in pajamas, or whose play clothes still have lunch on them? Even if you’d parent differently, if you’d be OK with other able-bodied parents doing something you see a disabled parent doing, then don’t worry about it. If you do reach out, do so with the intent of offering help; maybe a disabled parent is doing great in almost any way, but they have a difficult time getting the car seat in and out, or need help with a few cleaning tasks. Everyone needs a bit of help or support sometimes. Yes, there may be situations that require some kind of formal intervention, but the simple fact that a parent is disabled just isn’t one of them. Disabled parents deal with increased scrutiny on a regular basis, and adding to that doesn’t help. Fortunately, in the internet era, we can learn about all kinds of people and perspectives we might not have run into otherwise, and that’s as true for disabled parents as anyone! There are a lot of disabled parents out there, and most of them are pretty awesome. So if you ever see a disabled person with their kids out and about, chances are, everything is quite all right and they’re rocking it as parents!

Don't Call the Cops on People for Parenting While Disabled

The first time someone called the cops on Michael, he was pushing our 1-year-old son in a stroller. That’s it. Just pushing our baby in a stroller. They were close to our apartment and Michael struck up a conversation with two people sitting outside of a cafe. Michael has quadriplegic cerebral palsy, which affects his whole body, including how he walks and talks. His disability is visible, and because of that, people often assume that he is less capable or aware than he really is. I’ll never forget when we went to Disneyland and a well-meaning employee asked my husband, who had just passed the bar to become a lawyer, “Are you suuure you want to go on Splash Mountain? You might get wet, and then you could be verrry cold!” Most of the time, this tendency to underestimate Michael is relatively benign. Other times, it can be… let’s just say, problematic. I know the people who called the cops on Michael at the cafe didn’t mean any harm; they just wanted to make sure that a young child was being cared for adequately. But they could have talked to Michael longer, and even if they couldn’t understand him, they could have communicated in other ways. The second time someone called the cops, our now-toddler was having a tantrum about not getting an ice cream cone at the ice cream store they had walked by and briefly entered for a sample. Our little one was in full tantrum mode, with ruddy cheeks, thrashing and screaming. Someone came by, asked if everything was OK, and couldn’t understand what Michael said. In some ways, I feel a little more sympathetic to that person because, while our toddler is calm and happy most of the time, his tantrums tend to boil over and be intense. Still, he could have talked to Michael for longer than a few seconds. Instead, he called the police, who came and gave Jeffrey and Michael a ride the 100 yards or so home (we lived just a short walk away from the ice cream store). I told someone the day after about what had happened, and they said, “Well, I can see both sides,” implying that I didn’t have a right to be upset, or at least that the other person was acting reasonably. Their response still bothers me. Yes, I understand that the person who called the cops was not a bad person. But that doesn’t mean his response was fair or equitable. He could have tried to talk to Michael more. It was a quick and unnecessary escalation to calling the cops. I’m not willing to say that parents with disabilities are automatically being discriminated against when people check in on their kids, because sometimes disabilities can affect a parent’s ability to care for their children. That’s not a popular thing to say, but it’s been true for both me and Michael — if we didn’t have help, I don’t think we’d be able to meet some of our kid’s needs. I’m OK with people checking in a little. I’m OK with questions, though I think they should always be delicately put forward if you feel the need to ask someone, and I think that “just being disabled” isn’t a good enough reason for added scrutiny. Rather, if it seems like there is a specific lack, either in a parental duty being completed or in a child’s needs being met, then yeah, see if the kids are OK. If you are ever in the situation of seeing a disabled parent and feeling uncomfortable, then consider other able-bodied parents and what you’d be OK with for their kids. Are you OK with an able-bodied parent whose kids are in pajamas, or whose play clothes still have lunch on them? Even if you’d parent differently, if you’d be OK with other able-bodied parents doing something you see a disabled parent doing, then don’t worry about it. If you do reach out, do so with the intent of offering help; maybe a disabled parent is doing great in almost any way, but they have a difficult time getting the car seat in and out, or need help with a few cleaning tasks. Everyone needs a bit of help or support sometimes. Yes, there may be situations that require some kind of formal intervention, but the simple fact that a parent is disabled just isn’t one of them. Disabled parents deal with increased scrutiny on a regular basis, and adding to that doesn’t help. Fortunately, in the internet era, we can learn about all kinds of people and perspectives we might not have run into otherwise, and that’s as true for disabled parents as anyone! There are a lot of disabled parents out there, and most of them are pretty awesome. So if you ever see a disabled person with their kids out and about, chances are, everything is quite all right and they’re rocking it as parents!

Community Voices

The right attitude

<p>The right attitude</p>
64 people are talking about this
Community Voices

The right attitude

<p>The right attitude</p>
64 people are talking about this
Community Voices

The right attitude

<p>The right attitude</p>
64 people are talking about this
Community Voices
Community Voices