Christmas and mental health pain often go hand and hand.
As someone who has fought for her mental health for the last 15 years I have had good years and hard years... but when Christmas comes a big pang of pain and hate usually swoops in.
I didn't realize I experience PTSD from my father's passing when I was just eight years old until I described to a mental health professional how triggering certain things surrounding Christmas were to me. However the cycle of sadness and tears didn't go away just because someone told me my aversions and flashbacks to things I saw were an example of PTSD
My dad, my brother and I spent winter break in 1996 doing fun things that I listed in my creative writing journal at school. (Which is why I remember what we did) But on Christmas day my Dad started crying and pretty soon got so upset he left in the middle of opening gifts. That was the last time I saw him.
I was so sad and my eight year old self laid under the tree and stared up at the colorful lights as I held and talked to my new doll about things I was too young to understand. I loved my Dad so much and I'd never seen him cry like that any other time. He had Type 1 Diabetes and he wasn't it managing very well. And at some point, a day or two after that Christmas he had a major heart attack and died.
I don't remember Christmas making me feel so sad again until I was an adult. Then an adult I started to remember things I experienced after his death. One thing specifically is colored lights on trees and lights on bridges. I remember our neighbors driving my brother and me home from the funeral home to play some games while we waited for my mom to finish at the funeral house. The car was so quiet despite our sweet neighbors trying to strike up some happy conversation. I remained quiet as I zoned out at the sights outside the window. The lights on the bridges all blurred into one and is the main thing I remember of the drive home.
It took a lot of time in my life to decompress from the most painful event in my life. It wasn't until I was an adult that things I remembered started causing me pain. It hurt me most that my dad was so sad and I imagine that a major heart attack along with a broken heart were just too heavy for him to survive.
On Christmas 2019 I ate my way through my sadness. I did put up my tree but I spent a lot of time eating my feelings, crying and being alone. I gained 20 pounds last Christmas.
I wish I could tell you I "just decided to feel different about Christmas" and that it worked.
The truth is Covid 19 has taken a lot more out of me mental health wise than I could ever imagine it would.
On Instagram people I followed were putting up Christmas trees earlier than ever. Christmas means home, warmth and love for a lot of people. For me it also means the celebration of the birth of Christ.
My mom was shocked one day in the beginning of November this year to find my tree already up. Something in me made me want that warmth of Christmas too. I even looked at outdoor lights but didn't buy them because they were too expensive.
I moved my tree to my window in hopes others might feel the warmth too. And today I found two sets of lights on sale! I was thinking I needed my brother to help me put them up... but at 10pm I found myself outside in my socks on a stool putting up those lights up.
I know its ok to be sad when you lose someone.
I've met so many other people who have so much pain themselves surrounding the holiday. The "I hate Christmas club" is a club I don't want to own anymore.
This year I knew I couldn't go through sadness of years prior when so much is making me sad as it is. So, I've proudly embraced the holiday and every single Christmas thing I've done this year I have done with the thought of my sweet dad.
Today I also decided to make three Christmas care packages for kids with T1D in honor of my dad through my charity The Happy Package Project.
For the first time in years my little tree makes my heart smile and the lights around my door make me proud.
I don't know if this is healing or just desperation for normalcy after the most abnormal year ever. I can't promise I'll feel joy all season or for every year after this one. I do know I didn't cry while writing this story... a story about the greatest pain of my life. I know it's okay to cry if I need too,
I hope this season makes your home warm and that you feel emotionally healthy know for a lot of people the pain trumps everything, and for those of us who still suffer I hope you can claim one piece of the season that makes you feel whole again.
In loving memory of my father Clifford F Wheeler.
As the weeks drag on during this crazy pandemic that our world is facing I've been chasing a way to put into words my experiences and feelings as someone with a chronic illness. It feels like none can effectively describe the turmoil and uncertainty every person in the world is feeling right now.
When we were told to social distance I got it. I hated it just as much as my healthy friends and family but I'm assuming because I've been dealing with health related concerns almost half my life I understood what we were supposed to be doing.
The first weekend this whole crisis became real in the United States I was so angry to see people I knew going on hikes with friends and meeting people at the beach. It was so frustrating to spend my time explaining to my friends and family the seriousness of this pandemic but it seemed to fall on deaf ears. It was hurtful to be told that I was being paranoid or dramatic when in reality I was just paying close attention to any facts I could find on this virus as soon as they came out.
When the stay at home order in California was put in place my roommate and I decided we were not going to let people inside our home until this crisis was over. This decision was made because I'm an immunocompromised person and have other various risk factors. But on week two of the stay at home order I made a mistake and invited my roommate and her friend inside after seeing them sit together outside much less than six feet apart. It was getting cold outside and I was feeling super lonely and just didn't care that I was in close proximity to someone I shouldn't be at that very moment. As we sat in my living room playing a board game my roommate's friend asked me "So does this mean I can come over all the time now?!" I realized the mistake I made and admitted to them that although I was lonely and was having a great time with them we weren't making a good decision and it couldn't happen again.
That night while getting ready for bed I finally grasped the thing I had been reaching for since this crisis started. It wasn't that I was the only person who understood what safe social distancing was. It wasn't that other people didn't have to worry as much as I did about getting sick and that my health was more fragile than theirs. Yes, those were things I had been thinking a lot about, but it wasn't THE thing that made my situation unique from the healthy people in my life.
I realized that just because there is a global pandemic and everyone is doing the same thing didn't mean that I was. My health problems never go away and have actually gotten more complicated thanks to my appointments and treatments getting canceled. I still have to keep up with my medication regimen and have actually been to the pharmacy more frequently and been prescribed more medications to replace the medical treatments I've missed. Instead of a three- month supply of my Hydrocloroquine I get a 14-day supply. My Trigeminal Neuralgia and migraines have gone haywire after all of my April magnesium infusions were canceled. Wearing a mask while in public creates insane pain in my face due to Trigeminal Neuralgia and CRPS. My allergist tried to get me set up with Home Health and they didn't call him back for three weeks. Ive had the same rash diagnosed as 3 different things thanks to only being able to have phone visits with Dermatology. In the first few weeks grocery shopping was impossible and twice as expensive thanks to stores being out of the gluten free options I count on and because I'm on Social Security Disability I didn't have the option of stockpiling food like others.
Covid-19 or not I'm still sick and have the same needs I always have, if not more, and that is something that despite my efforts hasn't gone away or gotten better in fifteen years. I'm still a professional patient. That work never ends for me.
I accepted the place God has me in a long time ago and I still accept it now. But I do see that it makes my challenges during this crisis that much harder and that much more work. I know how important it is for me to stay well and stay home right now. Throughout my day I think of all the doctors and nurses who have given so much to me over the years. For our first responders I'm willing to wear a mask in the grocery, sanitize my hands in between errands and am trying really hard to remember not to touch my face and to wash my hands when I get home.
I'm happy to say that on May 1st I did get my magnesium infusion and yesterday my Neurologist came in just to give ME botox when so many of my friends are having to go without it.
It's week nine of staying at home and I can't say I've gotten much done besides "Netflix and chillin" all day and it hasn't been very chill either but I am happy to say I'm still alive and haven't gotten Covid yet. I've stopped feeling angry about decisions I see other people make and instead am trying to focus on making good decisions for myself.
When this is over I hope people will be a little bit kinder to one another and a whole lot more understanding of each other's challenges and beautiful differences. I don't think I'll hear "it must be so nice not have to work" from anyone I meet for a very long time now that nearly everyone has also experienced being at home all day everyday. That alone would be an awesome change to see. I know that when events and gatherings are allowed to happen I won't be choosing to isolate like I did in the past.
I hope this journey has given you as much clarity it has me and that you have found the words you've been reaching for. Afterall, we're all in this together. 🖤
Written by Sarah M. Wheeler, founder of "For Spoonies and Friends Only" on Facebook
With the current coronavirus pandemic, it's important to make sure you're getting good, reliable information. There is a lot of misinformation going around. In an effort to combat this, here are some links to good, reliable information. Hope this helps!
My mom was diagnosed with Lupus back when I was in middle school. Looking back, it all made sense. Every time we went outside when I was a child everyone would always comment on how red she was. She wasn’t sunburnt, she was just red. It mainly affects her face (hint: Lupus butterfly rash) but it will also affect her chest and upper arms. She also had quite a few hip problems, and no one could really figure out what was going on. She was finally referred to a rheumatologist after some funky lab work. She was soon diagnosed with Systemic lupus erythematosus (SLE). Her lupus mainly affects her joints and some doctors believe she also has RA.
Flash forward a couple years and I began having problems with occipital neuralgia and chronic migraines. The first neurologist I saw did some thorough lab work to see if there was something causing it that we didn’t know about. When we got the results,my antinuclear antibodies were elevated, and I had a homogeneous pattern. They wanted me to go see a rheumatologist and so I went and saw the same on as her. My very first appointment he wanted to diagnose me with arthritis, but I refused to accept the diagnosis and blamed it on gymnastics (I was a gymnast for 14 years prior). Three years later and in college and I started seeing a new rheumatologist in my college town and finally accepted my initial diagnosis of inflammatory arthritis. She did not diagnose me with Lupus but she went ahead and started me on Plaquenil to slow the progression because between my lab work and my mom’sdiagnosis there was no doubt I would shortly be following her path and we wanted to slow it down as much as we could. Since then I began getting the butterfly rash which we weren’t sure if it was related to my Trigeminal Neuralgia or Lupus. I didn’t agree with several things that she wanted to do so I switched doctors and am now seeing one at UTSW where I was officially diagnosed with SLE and Nonspecific immunological findings in addition to the arthritis.
While I wouldn’t wish this diagnosis on anyone, I am glad I am going through it with my mom. She is ahead of me in the progression of the disease, so I know what the future holds for me. This help me mentally prepare for the future and cope with it. We have both been on several medications so we can compare our experiences and together we figure out what will be best for each of us. Wouldn’t want to go through this with anyone else!
Type of RA and lupus?
Polyarticular Psoriatic Arthritis with Spondylitis and Enthesitis, was JIA since the obvious onset was around age 13/14
How does it affect your daily life?
My daily life consists of going to classes, studying, completing assignments, doing something with at least one of the clubs I’m in, and, of course, being with friends. This disease, along with some other ones, are woven through this and have really been a deciding factor in just about everything. I go to school in the place I do now because it has a small campus that I can get around, an issue I learned of when I went to a huge campus my freshman year, and that the air quality is decent, along with the fact that there are trees everywhere, which makes me happier. The schedule of my classes and amount of courses I take are planned out to give me the ability to nap a lot during the day, which I need to do, while still allowing me to have enough time to study & do my work for. The clubs I’m in are not at all physically demanding, most of the official things to do are very low activity if anything, this works for me because my body would not be impressed with me joining a rock climbing club, which I’d love to do but cannot. Even down to the friendships I have, if they are highly active, adventurous people, we aren’t going to be hanging out a lot. My closest friends at school all like to just hang out at each other’s places, watching something, talking, all things I’m usually perfectly okay doing, they are even happy to tag along on my medical errands, which is wonderful because I’ve always felt they interfered with my ability to be with people for as long as we want. And of course, my being able to do all of my treatments can change my plans, like if I have my fistful of pills to take at their scheduled times or can I get back home to do a nebulizer treatment since it’s not portable. Biggest of all, it can make me unable to do anything I need and/or want to do because I’ll be in too much pain or fatigued or have been doing too much and know I have to slow down.
Do you have triggers?
My biggest triggers for feeling miserable or flares are doing too much and continuing to say yes to things, not sleeping enough, stress, infections, staying still too long, even weather changes, like with rain or extreme temperatures (anything outside of 60-80F).
What do you want people to know?
The biggest thing I’d like people to keep in mind is the variability of these types of conditions, I can be living in a way that’s pretty normal, and then it will blow up. I’m often not going to have obvious physical manifestations, regardless of how bad I’m feeling, and that can be confusing for people. This is in no way a suggestion to examine me closely, but sometimes the less obvious predictors of how bad I’m feeling are how dark circles under my eyes, makeup, walking pace, paleness, skin mottling, breathing, how talkative & loud I am, speed of talking, focus level, eating, etc.
What food allergies do you have?
Peanuts and tree nuts
When were you first diagnosed?
How does it affect your daily life?
I have to read labels on everything I eat and watch what I eat.
What happens when you eat something you are allergic to?
My throat and tongue swell, I break out in hives, and since I have asthma it causes an asthma attack.
How has it changed as you have gotten older?
No change that I know of
What do you want people to know?
Food allergies are nothing to play around with, they are very serious and potentially life threatening. Also, do not make someone that has food allergies feel bad or make fun of them for it.
Where do you live?
- DFW, Texas
What illnesses (Mental or Physical) do you have?
- I have Major Depressive Disorder (Severe, Reoccurring), Anxiety, and Obsessive Compulsive Disorder. I'm also Autistic and ADHD, though I would consider those a part of my neurology rather than mental illness. Regarding my physiology, I have patello-femoral pain syndrome, which occasionally affects my mobility.
When were you diagnosed as Autistic?
- I was officially diagnosed as Autistic last summer, though I had self-diagnosed for many months before. I think that me being Autistic was overlooked for a number of reasons, particularly because I am AFAB (assigned female at birth) and had already been diagnosed as ADHD at 6.
How does being Autistic affect your every day life?
- Because being Autistic is a part of my neurology, it affects everything I do. I'm particularly talkative on some days and super quiet on others because I'm Autistic; I spend hours looking up obscure information that only I care about because I'm Autistic; and I tear off all the tags on my shirts and shoes and pants because I'm Autistic. These are just a few examples out of many, but I think that it's important to realize that my neurology is who I am and how I experience the world. Sure, I might have to take breaks where allistic people wouldn't, and I can spend hours trying to find that one perfect word to match the specific meaning I have in mind... but neither of those things are objectively bad. Society is what limits my "ability", not my neurotype. If I were to change the ways that being autistic affects me, I would not be the same person.
Are there any items or techniques that you use to keep your symptoms under control?
- Many Autistic people, myself included, "mask" in order to present a more attractive front to society. This doesn't mean that we are any less Autistic; it's just that we are repressing our nature in order to appease social expectations. Personally, I don't try to redirect my behaviors unless they are harmful to myself or to others. Masking is something that I'm learning to "un-learn", because acting in a way that you're not wired to act is, at minimum, exhausting. Stimming is how Autistic people regulate sensory input-- when that is taken away from us, our most important "technique" ceases to exist.
What is something you wish neurotypical people understood about being Autistic?
- I wish neurotypical people would understand that Autistic people aren't puzzles that need to be solved. We aren't burdens or part of a larger "epidemic", and speaking up for ourselves doesn't make us too "high-functioning" to have an opinion. Autism is a spectrum like the color spectrum, not the number spectrum; in this, there is no "high" end or "low" end, because no two people's experiences are the same.
What advice do you have for someone newly diagnosed as Autistic?
- First: Don't think of yourself any differently than you did before your diagnosis. YOU haven't changed, only your label.
Second: Seek out community. There are people out there who understand what it's like to be neurodivergent in a neurotypical world, and their perspectives will add to your own in insurmountable ways.
HTW: mentions of body image and weight
My journey with the feeding tube started July of 2015, a little less than a month after I was diagnosed with Gastropareisis. Gastropareisis is a digestive issue that basically means partial paralysis of the stomach. This means that when someone with eats a meal or drinks a beverage, the contents can sit in the stomach for hours, or even days. Symptoms ranged from mildly annoying to so severe that some people can't even eat or take in fluids, so they have to rely on feeding tube or TPN to survive. What causes it is unknown, but it is believed to be caused by a damaged vegus nerve. I was diagnosed with it in June of 2015. I didn't get the feeding tube right away. At first we tried Reglan to help move things along, but that really wasn't helping. I also have been pumped so full of Zofran, that it's not really effective anymore. Then we tried other options such as Erythromycin, and then we tried Botox injections. My weight kept dropping. The doctor in the hospital told me that we were going to do a feeding tube next, the dreaded NJ (nasal gastric tube). She popped in my nose, and down it went. It was so uncomfortable. I was finally discharged, and then I kept tube feeding about a month, until I saw my GI. After that, I tried making some adjustments to my diet. That helped some, but I still wasn't getting proper nutrition, and I kept puking my NJ tube out, so then I found myself admitted again. The doctor told me that we were going to try a GJ (gastro jujenostomy) tube next. It was easier to hide than a NJ tube. Putting that in was so uncomfortable. The doctor had to put a tube down my nose and pump air into my stomach, then he gave me a local anesthetic, and punctured my stomach to place it. I spent the night at the hospital. I've had it for about 3 1/12 years. I don't really feed much anymore, as I still try to get my intake orally. My weight has been stable, but my gastroenterologist and my primary want me to use it because they said if I needed major surgery for my other issues, that I couldn't get it since my weight isn't right. Something I struggled with is that I'm really self conscious about my body. Before I was chronically ill, I was physically fit, but unfortunately my health started to decline, and I lost all that muscle and weight. I'd love to put it on through working out, instead of the tube, even though my doctor wants me to continue feeds. I still use it for draining and meds though.
What is it like being diagnosed with a chronic illness at a young? It's awful being diagnosed at any age, but terrible being young! It has really robbed me of a lot. My story begins in February of 2007. That was my freshman year of high school, but I am first going to talk prior to it. The summer of 2006 I just started lifting weights and got serious about working for football. I've always had a solid build and played sports. I was able to put 15 lbs of muscle on in three months, and I had a great season. Little did I know something terrible was brewing just a few months lster. It all started when I was having repeated trips to the bathroom. I did not think anything of it at first. Then I started to develop sharp stabbing pains in my stomach! My weight was started to drop. I didn't really tell anyone though. Eventually I started bleeding heavily. My mom saw the blood in the bathroom! Enough to look like a crime scene, so she made an appointment with my pediatrician at the time. He wasn't too concerned at first about the weight loss because according to him my weight was correct for my height. Eventually people started to comment how pale I was looking. She took me back, and she told him that he needed to labs. I was anemic. He then referred me to a gastroenterologist. She did a whole workup of tests, including a colonoscopy. We got the diagnosis of ulcerative colitis. My mom suspected it. It hit me like a freight train. I never saw it coming. I was pissed off, and I was scared. I did feel like a normal teenager. I thought I had my life figured out after high school, but boy, was I wrong. I wanted to go into the military. Two years later my GI tested for a liver disease called Primary Sclerosing Cholangitis, but I'll talk more about that another time. They say I'll more than likely need a liver transplant, and that concerns me. I did have a few good years of health after that though, as I was able to play football and workout! Fast forward to 2015, and I was slapped with another diagnois called Gastropareisis. It has severely impacted my ability to eat normally and stay hydrated. Everyday I deal with nausea and vomiting. I am thankful I can still eat though. Being ill has changed me so much! John Lennon said, "Life is happening when we're busy making plans". That's okay though because we are suvivors, and we have to learn to adaot with our situations, and it's certainly not easy being young and ill. Many of you can sadly related.