PANS/PANDAS

Join the Conversation on
PANS/PANDAS
1.6K people
0 stories
405 posts
  • About PANS/PANDAS
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
    Newsletters
    Don’t miss what’s new on The Mighty. We have over 20 email newsletters to choose from, from mental health to chronic illness.
    Browse and Subscribe
    What's New in PANS/PANDAS
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Community Voices

    9 Tips for Cooking With Chronic Illness or Disability

    Since being able to cook again for the past couple of years, I’ve been learning how to navigate the kitchen as someone with a chronic illness that causes limited strength and energy. It’s been a trial-and-error process, but I’d like to share some things that have made my life easier. This advice is for any spoonies out there or anyone who wants to save time and work when cooking. 1. Keep cooking with a chronic illness simple. Look for recipes with few ingredients, as long ingredient lists are hard to source, and many elements take time to prepare. Read the method in advance, check that there are not too many labor-intensive stages, and/or look for ways you can cut corners. Also, you don’t always need to cook a gourmet meal to make it healthy. Sometimes a simple baked potato or a bowl of soup will do the trick. Healthy Living James shares a lot of great tasty and accessible recipes on his Instagram page and in his new cookbook. 2. Cook using packet mixes and meal kits. If I’m not up to cooking something from scratch, I have some packet mixes in the cupboard for making free from bakes, pancakes, veggie burgers, nut roasts + falafel. Some of my favorite U.K. brands are Free and Easy Foods and Artisan Grains. I’ve also found meal kits delivered to your door like Hello Fresh and Gousto Box make your life easier by providing all the ingredients already measured out. Spice mixes are also a great way to add some flavor to any dish and try out a new cuisine from home. You can be transported to the Mediterranean, Morocco, or India! 3. Use kitchen gadgets to make cooking with chronic illness easier. I use a kitchen stool to conserve my energy, a microwave, dishwasher, food processor, a powerful Nutribullet blender, and a handheld mixer that I’d like to replace with the Ninja Kitchen chopper that Deliciously Ella uses for chopping and making dips. On my wish list is a slow cooker, which you can leave all day to do its magic. The Magimix Cook Expert available in the U.K. sounds pretty awesome too. When baking, I’ve found an ice cream scoop useful for measuring out the mixture for healthy muffins and cookies. And get a digital scale – just in case you happen to have the old-fashioned kind with weights, don’t do it to yourself! 4. One pot cooking can help reduce chronic illness fatigue. This is so much easier than having a lot of different elements on the go. I use a large, shallow casserole dish on the hob or make a whole meal in a roasting tin (check out The Roasting Tin cookbooks by Rukmini Iyer for ideas). 5. Batch cook so you don’t have to prepare meals as often. If you can, always make extra so you can have the leftovers for lunch/dinner the next day or freeze portions for days you aren’t up to cooking. My favorite batch breakfast is overnight oats which keep in the fridge for 2-3 days. 6. Buy frozen fruit and vegetables to save time and energy. This is so useful as you can chuck a handful of broccoli florets in your stir fry and save yourself lots of chopping up, or frozen raspberries to your oatmeal, smoothies, and juices (I’ve been using a green smoothie mix lately too). Tinned or jarred fruit and vegetables or freeze-dried fruit are good backups in case you are ever stuck for anything fresh. 7. Buy sharp knives and lightweight cooking implements. Be careful, but these can save work by making chopping and peeling much easier. Lightweight pans and mixing bowls, etc. are also much easier to lift. Try to reuse bowls, chopping boards, and implements if you can to minimize washing up! 8. Minimize distractions while cooking with chronic illness. Brain fog can make it difficult to concentrate, so make sure you have the kitchen to yourself and don’t try to multitask (maybe leave your phone in the other room) while following a recipe. I love singing along to music as I cook, but I tend to save this for recipes I know by heart. 9. Lastly, learn from your mistakes. Mine was attempting to cut through a turnip, never again! And have fun! I find frying onions and melting chocolate very therapeutic! Check out my Instagram page Healing Simone for healthy, clean recipes.

    Community Voices

    Wrecking Ball, Meet Rope: Cancer + Mental Illness

    <p>Wrecking Ball, Meet Rope: <a href="https://themighty.com/topic/cancer/?label=Cancer" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="Cancer" title="Cancer" target="_blank">Cancer</a> + <a href="https://themighty.com/topic/mental-health/?label=Mental Illness" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5800553f33fe98c3a3" data-name="Mental Illness" title="Mental Illness" target="_blank">Mental Illness</a></p>
    6 people are talking about this
    Community Voices

    Chasing Ghosts

    <p>Chasing Ghosts</p>
    4 people are talking about this
    Community Voices
    Community Voices
    Community Voices

    My week and my attitude, glad to be resting

    I started making plarn today. ( for those who don’t know what plarn is, it’s plastic yarn), and finger crocheting rope and the plarn. I'm gonna join the two together to make a bathroom mat.
    Had a lice scare yesterday. But it turned out to just be a case of dry scalp and bad eyesight. High anxiety, I’m still itching just thinking about it.
    I had a little money left over after paying some bills, just enough to buy myself a new bra. Super excited about that. (Having little to no money can also be a source of anxiety.
    Helped the kids (ages 7,5, & 4), clean up their bedrooms and the play room; an all day event and super frustrating for me.
    (I think I'm what people call an authoritarian when it comes to children and cleaning).
    Cleaned the kitchen, cleaned out the pantry, silverware drawer that was also the "catch all " draw, which drives me crazy. The pots and pans and baking sheets and such, hate all that chaos.
    I totes wish being a grandma was easier, Im too old for this mad house life.
    #parentingpast50
    #tired #anxious #ObsessiveCompulsivePersonalityDisorder
    And a few other issues thrown in for good mesure

    2 people are talking about this

    Pregnancy With Bipolar Disorder and 'The Great British Baking Show'

    1. I read that after my baby is born, she’ll recognize voices she heard regularly from inside the uterus. I don’t go out much anymore, but she’ll know my voice, my husband’s. And she might remember gentle British accents, satisfied hums over pie and drizzle cakes, laughter. I’ve watched an episode of  “The Great British Baking Show” (GBBS) almost every day throughout my pregnancy. I used to be afraid of having a psychotic episode while pregnant. During these periods, I become obsessed with running away. I imagined the hormones crashing through my body, stepping off a train platform in a far-off town. Or, my preferred route, walking north until I hit someplace wooded and remote. I haven’t run away or become psychotic. I never miss weekly appointments with my therapist and psychiatrist. I use a pillbox with 28 compartments. And for an hour most days, while my husband rides the train home from work, I watch Britain’s top amateur bakers smack bread dough, pipe buttercream onto ginger biscuits. Some of the bakes aren’t very good. I say that lovingly. Because they’re fantastic compared to the lumps of gray goo I’d fling out of the oven. Especially under that kind of pressure. And the mistakes might be one of my favorite parts of the show. The close-ups of the other bakers whispering encouragement. The judges throwing in an obscure positive comment about adequately-sieved raspberry coulis. I arrange the right pillows behind my neck and back, and I forget for an hour about my pelvic pain and insomnia. The baby kicks, I talk to her. 2. In Lamaze class, I’m instructed that I need to relax between contractions. In a gap of a minute, I need to rest, even doze if I can. Lamaze class is over Zoom, and the teacher watches my husband and I practice our poses and breathing. I start out thinking I’m pretty good at breathing because I meditate sometimes. But I get confused right away with the first variation, trying to imitate the teacher’s sighs. My teacher emailed us suggesting that we pretend to be in labor for several hours, timing contractions every 10 minutes or so. I look at my calendar, but I’ve got other things I’d like to do every day. I count six weeks until my due date. In several hours, I could watch a third of a season of GBBS. But, given that time, I wouldn’t watch three consecutive episodes. I’d watch three semifinals from different seasons, the patisserie-themed challenges. The bakers are at their peak, competing for the honor of baking their best for the final. Honor and friendship are the only prizes on GBBS, other than a glass cake stand. I’d shuffle through the seasons. Disappear into the theme song, soothing strings and piano. A layer of pastry, then butter. Pastry again. In class, I breathe, imagine my body wracked with painful contractions. Then in the 60 seconds of relief, I try to relax, as fast as I can. 3. “You sound good,” my therapist says over the phone. She says this most sessions. My psychiatrist agrees. The most time I’ve spent depressed in bed during the pregnancy is a couple days. And, even on these days, I usually leave bed for at least a few hours, even if only to sit in front of the TV watching “The Great British Baking Show.” I’m not sure what my OB thinks of my stability. For the first two trimesters, I message him twice a week with confused complaints, show up to my monthly appointment going down a list of 12 questions. “A couple more,” I say. “This is the last one, sorry.” He’s troubled when I mark on the questionnaire that I’ve had self-harm thoughts recently. I tell him that I don’t plan to do anything, that I’m talking to my therapist and psychiatrist and husband. “I’m actually doing pretty well,” I say. I don’t know how to explain that I’m used to these thoughts in the background, the volume low lately and easily dismissed. 4. The bakers are always shocked when they win. The camera pans to their face, and they gasp, clutch their chests. Even if they outperformed everybody else the whole episode, turned out near-ideal Chelsea buns, Swiss rolls with dizzying swirls. They never see the win coming. I’m often surprised, too, because something happens to my brain when I watch “The Great British Baking Show,” where I barely remember who baked what. By the time the bakers reach the third challenge, all the doughs and creams have blended together in my mind, no matter how many times I rewatch. I just have a general sense of contentment and appreciation, for these people, their dedication to braiding bread. For at least one hour of the day, I’m enjoying my life. Usually I rewatch old seasons, but in September the brand-new season started releasing an episode every Friday. I convinced my husband to join me watching last year’s season, and he agrees again this year. We admire gorgeous pavlovas, cheer for our beloved bakers, my husband’s hands resting on my belly to feel the baby kick. “She heard you!” I say. “She wants to meet us!” he says. 5. I thought for many years that I was too unstable to care for a child consistently. I haven’t had a major mood episode for almost three years now. I ask myself whether the changes have stuck, how long is long enough to tell a good run. I’m hoping my daughter and I will get a lot of time together. Enough time for enough good memories. She won’t remember our daily routine now, working to her favorite Joni Mitchell, preparing a smoothie since she craves fruit. Heading out for errands, our hour of tarts and Victoria sponges. I wonder if she’ll be very different on the outside, or if I’ll recognize her personality from her spirited movements. For our baby’s first Halloween, we’ll dress her up as a loaf of bread. My husband will put on a long dark wig, and I’ll wear a colorful necklace. We’ll talk in British accents, commenting on dough aeration and distribution of fruit. I don’t think any of it will be familiar to her, even though she spent so many hours listening. We’ll tell her again.

    Community Voices

    Cooking and Eating Healthy with Diabetes and Chronic Pain

    <p>Cooking and Eating Healthy with <a href="https://themighty.com/topic/diabetes/?label=Diabetes" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7700553f33fe99129c" data-name="Diabetes" title="Diabetes" target="_blank">Diabetes</a> and Chronic Pain</p>
    Community Voices

    Has anyone experienced trauma from childhood chronic illness?

    I try searching for stuff about it online, but it’s usually like how trauma can cause chronic illness. So the experience feels isolating.

    I’ve been chronically ill since the age of 5, starting with PANDAS (often called BGE). Which is basically brain damage caused by strep throat that gives me ~lovely~ mental and neurological issues.

    And, of course, in true chronic illness fashion, I have since gained more diagnoses, including PTSD.

    And I feel like the actual chronic illnesses that have plagued basically my entire life + how they (and I) were treated because of it: medical neglect, medical abuse, bullying, loss of a normal childhood, etc, has led me to develop a unique type of trauma.

    #PANDAS #PANSPANDAS #PANS #bge #Encephalitis #OCD #Tourettes #PTSD #CPTSD

    6 people are talking about this