My Parasthesia, Brevity of Life, and a Fellow Spoonie

I mentioned this in my last YouTube video, but I haven’t gone in depth about how it affects me mentally, or how some of my daily life is different. I have paresthesia, or numbness, in my hands and occasionally my toes. Most notably in my right hand.

Now, when I tell people this, I get varied responses. Most are the kind that are dismissive, or sympathetic but also not touching too heavily on the implications. But two responses I’ve gotten were empathetic, and/or supportive, and the one that was both came from a fellow spoonie.

First, I want to talk about how I feel. I’m not throwing a pity party, but it’s also normal to go through that sometimes. So, if you’re someone who’s in that place right now with your own illness, that’s okay. It’s normal to have moments that feel hopeless. Congratulations, you’ve embraced your humanity. But that isn’t me right now, and it hasn’t been much this whole time because we still don’t quite know at what level of seriousness this all is anyway.

I’m not feeling sorry for myself. Most of all, I’m not scared. Not in the way people think anyway. I’m not scared of having my hands go totally numb to the point where I don’t know they’re there unless I look. I’m not afraid of the worst case diagnosis (one possibility of which is neurodegenerative). I’m not afraid of having to alter my lifestyle; considering I have already done that with my other illnesses.

What I do fear is running out of time to do the things I love. Many of which require good hand coordination and dexterity. Piano , guitar, painting, drawing, cooking, sewing. It’s been difficult trying to do those things lately.

My handwriting, which has suffered greatly, is not the way that I would prefer. I used to pride myself in my beautiful handwriting, and now my hand cannot continue writing well for a long amount of time. My boyfriend has started checking the temperature of my kitchen sink water before I wash dishes, because I’m unable to feel how hot it is. He went to wash his hands and realized I was burning my own under the water.

Sewing the most basic things is painful. I haven’t been able to get to a piano to play and luckily guitar isn’t affected much, but will they be affected in the future? Drawing is almost impossible when my numbness is at its worst. Life is so short, but that brevity becomes more drastic when my skills are declining.

I’m eager to find out what’s wrong, so that I can move forward, get the accommodation I need, and start making a plan. I’m much more uncomfortable with the uncertainty, than I am with the diagnosis I might get. If it’s just a pinched nerve, then I’ll do the treatment and try to heal the best I can. If it’s a more chronic condition, then I’ll make a plan, and move forward.

I was more scared of losing my favorite hobbies up until recently, when I met a fellow spoonie who has peripheral neuropathy. He cannot feel his legs, and must look down at them to walk. He’s had to relearn to walk multiple times. That’s his reality. He was empathetic to the whole experience, but not patronizing or dismissive. He didn’t tell me to stop worrying, because he understood that worrying isn’t really what I’m experiencing. He knew I was only mentally preparing for all possibilities. He said it straight: there might come a day when you want to quit because you can’t seem to do anything. That I might lose more of my feeling in more limbs. That if that worst case scenario happens, I simply want to be prepared. He doesn’t quit, he knows the struggle, and he moves forward. So, his advice was this: If you look at your hands, it’s easier. Your brain will adjust to the idea that the signals it’s getting are different. Just work, go through the long process, and don’t panic if you can help it. He and I agreed that breathing and remembering that if we just remain grateful for what we can do, we can keep learning, growing, and most importantly: living.

This advice made my day, not because I didn’t already know, but because it was coming from someone who had lived it. When a doctor or PT tells you these things, it’s hard to believe that it’ll be that easy. But when someone who knows what it’s like does, it reminds you that sometimes you just have to change your perspective. So, if I have to get special art supplies, or draw more slowly, or use a different art medium, or hand sew less and machine sew more, I can. Loom knitting is already my favorite over traditional needle knitting. Making clothing can be less detailed and more basic and I can work my way up to detail.

And if, eventually, I cannot do those things at all anymore, I will find another hobby to enjoy. And if eventually I can go back to PT, or there’s another treatment and I don’t have to deal with this again, then even better. I can go forward with an even greater appreciation for how my body functions. No matter what, I’m not going to fear what happens. I will fear becoming complacent. I will never stop trying and moving forward even if every movement is painful. I will use my spoons to the fullest and keep growing and learning. And when all else fails, I will ask my loved ones for help when I need it.

No Hunger. No Thirst.

It took me about 4 years to realize, just this June, that I don’t experience hunger or thirst anymore. I remember that I did experience them, but I don’t remember what it was like.

When my boyfriend, or my parents, or my coworkers say they’re hungry, they mean they’re experiencing hunger. For me, it means I’m experiencing stomach growling, or I’m feeling faint and recognize I should eat. I have an appetite and can tell you which foods I could eat, but I have no motivating drive to eat immediately. I do, however, know when I’m full. It’s strange and to be honest I haven’t spoken with my doctor about it yet.

More documented globally, but also not discussed with my doctor personally, is my adipsia, or a lack of thirst. My body needs water, but I don’t feel the thirst. I’ve had to set alarms to drink water and often have to push myself to get up and drink.

If I get too dehydrated, I’ll have a panic attack not related to my mental state. I still won’t feel thirsty, and it took me a long time to figure out that drinking water, especially before bed, alleviated these. I was looking for something to take my mind off of it, chose to get some water, and voilà: relief.

I think (I can’t know for sure) that this is because of a medication I was asked to try in 2015 to help my symptoms. As it happens, I’m allergic to it. The first day, I dry heaved for hours and lay on my floor waiting to die. The second day, I realized I hadn’t had any food or water in 24 hours and I didn’t feel the desire (or appetite) for them. There was a weird hole where those feelings had been. Unless you’ve experienced this kind of absence of feeling in some way it’s difficult to explain. I immediately contacted my doctor then, and listed the medication as an allergy. She promptly asked me to try continuing it for 3 more days. No thank you.

I eventually started getting my appetite back, if I put food in my mouth it tasted good and I could eat until full, and I could basically chug water until I’d drank enough, but I still didn’t feel hungry or thirsty. So, I learned to watch the clock.

A weird thing: I craved sugar. Always. Science has shown us that sugar is extremely addictive. I can really only assume that in my case, I still have my addiction to processed sugar so I can reach for that any time. I have to work hard to remind myself that it doesn’t count as a meal.

I gained, I think, a very small feeling of hunger back since I do have an appetite, but thirst is another story. If I’m not active, I can literally sit there for 24 hours and never notice I need water. My dizzy spells tell me I’m thirsty.

It’s strange, and I’ve seen some people in chat threads say they’ve experienced the same thing. I wonder if there’s something they can do about it, but if not it’s pretty easy to manage and work around. If you’ve experienced this, leave me a comment about it!

Me and Food

As a Spoonie, my challenges are unique because no one’s life is the same. One aspect I know isn’t unique is the anxiety that comes with eating during or post-gastric illness. It’s pretty common for me to find people who relate to food avoidance due to illness.

When I had my first bout  of illness, I was really afraid to eat at all. I spent months in bed, fighting nausea and eating made me feel so much worse. One bite of food meant going from sitting upright, to curled up in the fetal position kinda wishing I could die. Literally. I would tell my mom a lot that I wanted the hospital to just give me sedatives so that I could sleep through everything, or I was really close to just giving up on life. Simple things like sitting up, or staying awake for more than a couple of hours became complicated and difficult. I took a lot of hot baths to soothe my stomach, and went days with minimal food.

Goldfish crackers probably saved my life.

They were easy to digest, so I didn’t get sick from eating them. I’d go through a large seal-able bag a day of the whole grain baked kind. The salt probably helped keep my electrolytes up too. Aside from those, I could eat a little bit of apple sauce, and white bread (wheat bread is still a no for me even though I used to eat it daily), plus juices and broths. Some days, I’d get so hungry I’d give in and ask for an Arby’s classic roast beef and a sprite, eat it all, and then regret it. But, I was really lucky to be born with a strong stomach, so I actually kept the nutrition from everything I ate instead of vomiting. That in itself was probably torturous just because if I had gotten sick I probably wouldn’t have felt nauseous anymore. The reality is, that torture meant I didn’t need to be hospitalized or need a feeding tube or TPN (basically IV food).

Processed food was the best for me, because I could actually digest it. Before my gastroparesis diagnosis, which came long after my Inappropriate Sinus Tachycardia/POTS diagnosis, I was using trial and error to find foods I could eat. Afterwards I was able to use what I had found, plus some good advice from the doctor and other gastroparesis patients, to find a better diet. I got really lucky, when CBD was legal to use, it, plus other enzymes I bought on Amazon, helped me eat enough to train my system to digest better. My particular type of gastroparesis is actually reversible and CBD oil was a huge help. I was really disappointed to see it become illegal in my state and am hoping that in the future that might get reversed.

One thing that helped me get through it was actually really problematic for my digestive system: laxatives. Because digesting food was difficult for me, emptying my system stopped me from being nauseous. This had obvious problems: I typically went to important events with zero food in my system and no water, and it wasn’t helping me heal. But, when it came down to helping me have some semblance of life, it was almost necessary for me at the time. Then I was introduced to CBD oil by a friend and I could actually live my life again. I could eat, and go out, and didn’t feel like I was half-living.

The one thing that stuck was that I still have go-to foods for days when I have plans. Goldfish crackers, Cheese-its, candy, processed food, soups, and Pop-Tarts. I eat a lot better now, but there are still times where I’m not getting proper nutrition, or enough fluids. When I do feel sick, I often make it worse by failing to eat or drink anything, just because I’m afraid of getting sicker like before. I also have a lot of anxiety about getting sick. When people say they’ve had the stomach flu, or even if someone totally random vomits and I don’t know why (could be a hangover, or food poisoning) I get a panic attack. I work around this a lot and am still in the process of getting through it so I can eat normally without worrying so much.

I was extremely lucky to have very mild, and reversible, gastroparesis. I’m lucky I even get the chance to eat again. I used to make big lists of foods I would eat if I could, and now I can eat most of them. Some I cannot because we found I have a lot more food allergies than I realized, but the list of things I can eat is still extensive. I learned a lot about myself and even reduced my instances of  IBS just by learning what foods irritate my gut. Moving forward I hope someday I can eat with zero nausea all the time, and not worry so much when others are sick.

Headache and My Daily Life

I haven’t been very active online lately, or at all really. This post is just to increase awareness of what daily life is like with chronic illness. Everyone is different, some people have a much harder time than others; I’m relatively lucky but I still think it’s important to share the minor problems too.

Lately I’ve been dealing with a near constant headache. I’m not sure what’s causing it, if it’s a migraine, a result of my blood pressure jumping around so much, or if I should see my doctor. If it continues much longer I’ll definitely be seeing someone. It’s been making it difficult to focus, think straight, or get things done.

My daily life has been focused on maintaining daily exercise – a light routine my cardiologist would like me to do to increase my body’s ability to respond to positional changes – going to work, and keeping our apartment clean.

If you follow my YouTube channel, you’ll notice all of my videos have been of me playing Witcher 3 on the PS4. It’s been easier to do that but lately looking at a screen has been painful.

I’ve tried increasing my fluid intake, acupressure, lowering my stress, etc… Nothing helps. I’m beginning to think that, just like pretty much all of my health issues, it’s just another annoying symptom I’ll have to learn to live with.

That’s the reality for most spoonies: can’t fix it, have to live with it for who knows how long, maybe forever. It’s frustrating to say the least, and depending on your situation and symptoms, it can be devastating to your goals or just your general wellbeing. Physical pain and discomfort has a negative affect on mental health as well. It’s hard to stay above the line where your symptoms create a steady decline in health.

I hope the symptoms I’ve been dealing with get better as I try to strengthen my body and endurance, but it’s definitely setting me back in my own personal progress in life. I’m just going to keep moving forward and tackling problems as they come. Hopefully I’ll have more content for everyone soon.

In the meantime, I’ve been trying to update our cat’s Instagram @yurithechainchomp and soon I’ll be compiling a playlist of the best witcher videos with details as to where to find things. Good luck to anyone dealing with their illness more than usual lately, and best wishes as we move into spring!

Diamond Headache Clinic Slideshow

This post was requested by Diamond Headache Clinic. I recieved no payment to post it. I have read through the information and I think it would be a good resource for people who read this blog. I am not and have never been to the clinic and will always recommend anyone to look up reviews and research a medical facility before visiting them for treatment.

I hope this slideshow on types of headaches children may suffer from is a helpful resource!

Presentation courtesy of Diamond Headache Clinic

If the slideshow fails to embed, you can view it here

From Start to Finish

What’s the best way to manage time? How do you organize your own ambitions and interests? Do/did you just pick one to focus on and leave the rest behind? Do you do a little bit of each every day or week? Do you master one and move onto the next?

I think it’s safe to say I’m an organization fanatic. I love trying new ways of organizing my things and my time. I love filing at work. I love sorting out my things and folding clothes and arranging items. I love trying new time management apps and making lists; you get the picture. Anyway, my whole life, I’ve always made it my goal to improve in every aspect of my life. Lately, due to my graduation coming sooner than expected, and the added fact that I no longer attend classes, I’ve needed to rethink my time management. I’ve got to consider what I want to do for my future career-wise and with my hobbies.

I’ve been feeling like my old method of doing a different hobby/endeavor each day is failing me in terms of my potential. So, here’s my new plan:

Start something. Finish it. Move on.

Whether that thing is beating a videogame, learning a language, getting my body into shape enough to do something specific, writing, knitting, sewing, etc…

The only added rule is I also have to maintain the cleanliness of our apartment, as well as keep up with daily responsibilities and maintain things I’ve learned or achieved already. What’s the point of learning a language if I forget it a month or two later?

This is the way I’m going to try things for a while. Recently I’ve been trying to beat Witcher 3: Wild Hunt for PS4. You can check out my YouTube channel for those broadcasts. Then I’ll do something else, finish it, and move on. I hope this new way proves to be more beneficial. The way I’ve been doing it seems to have downsides.

In K-12 school, the worst part of the way we do it in America, is there’s always a review time which ends up becoming a “we’re learning it all over again” time. We’re thrown so much information, and the focus pinned on testing so much so that students often do rote memorization just enough to remember information for exams and then it’s forgotten in a night. I can’t tell you how many times myself and students I know spent cram sessions trying to “learn” the material to ace the exam. It doesn’t work and our teachers know it, but the system is broken and that’s how we learn here.

My way of jumping between tasks feels a bit like that: I don’t finish learning as often and I have a lot of half started projects which I’ll just have to restart later because I’ve forgotten what I was doing. It’s my little experiment; I hope it works.

It’s about 4:00 AM at this exact moment and I’m being kept awake by my cardiovascular system. Since Christmas, possibly longer, I’ve been struggling with high diastolic blood pressure, and elevated systolic pressure. My diastolic, at least when we’ve managed to measure it, has reached 99 mm/hg and that one saw me in the ER on New Years Eve pretty much exactly in the window of 11:30-12:30. My arrhythmia and tachycardia have been severe as well.

Since then, I’ve been trying to rest and keep my pressure down. I’ll be seeing a cardiologist soon – the first one since I was asked to leave the disautonomia clinic I was in due to my refusal to complete a test that would’ve made me radioactive for a year and raise my cancer risk. I’m worried it’ll be a repeat of my past experiences: a doctor using me as a guinea pig instead of helping me live my life as comfortably as possible. But, I’ve heard good things, so I’m hopeful.

As I’m lying here, I’m wracking my brain for what else could possibly be wrong if it isn’t a genetic predisposition, stress, or my conditions causing the raise in blood pressure. Could be an infection, or maybe a virus, or an unusual imbalance in electrolytes…. but more likely than not, as usual for me, it’s probably just my body doing something new. And that’s frustrating.

I was born about 3 months early, and we’ve got this running hypothesis that being so early made my body and nervous system a bit different than most. A more hypersensitive, vulnerable system to outside stimuli – including stress and the normal passing of time. I have zero non-anecdotal evidence for it, but I don’t think we’re too off.

If we aren’t, is this just my body failing me? Did one day come along and my body decide “now we’re gonna do migraines” and then a few years pass and it’s “screw migraines, muscle twitches are the new thing” then “twitches out, gastroparesis in” on to “time for high blood pressure!”. I’ve dealt with a lot of random, and annoying problems, but none of them posed as much threat to my health as an extended time with high BP. It’s frustrating, and a little scary, to see how quickly things can change (and it’s not the first time).

I could lay down and be miserable about it, or I could spend all my time thinking about the good things in my life, but I don’t think either of those is healthy. They might work for some, but for me personally, I prefer the middle ground: Rest, and accept the negative feelings that show up, and remind myself that it could be so much worse.

I don’t want to tell anyone else how to handle their own personal health experiences; this is just how I do it.

Tomorrow, my body could decide to work in a way that doesn’t make me feel sick, or it could get worse. I’d prefer to just move forward and hope for the best while preparing for the worst.