So I got a wheelchair...

I've been downplaying how bad my ME/CFS is for a long time, even to myself. (ME = Myalgic Encephalomyelitis, which is the proper medical name for Chronic Fatigue Syndrome. Most people with the condition prefer saying ME instead of CFS, as the name Chronic Fatigue Syndrome makes it seem like it is just being tired, and it is so much more.) I can't stand for more than 5 minutes without feeling like I'm going to collapse (and if I keep standing/walking much longer after that, I actually will collapse). Whenever I have to leave the house, a few hours after I get home, my entire body is hit with intense pain everywhere. I had an appointment with a new doctor a few weeks ago that took a few hours, and it took me about a week to get back to my baseline afterwards.

I ended up sobbing to my mom and explaining how bad it's gotten, and we decided to buy a lightweight electric wheelchair. It only weights 26 pounds and can be folded up and put into the back of our car just like we were doing with the walker I've used for the last several years. It's light enough for my mom to lift in and out of the car, and we're hoping it will give me some relief with the severity of how horrible and exhausted I feel when I have to go out. It won't fix it, but it should help.

I've ordered a cute bag to hook onto one of the armrests so I can have quick access to my most important things, like medication and my wallet. For stuff that I need to take with me to appointments but won't need as often, I'll keep it in my backpack like I've been doing, but hook it onto the back of the chair. I took the chair out onto our driveway to practice, and although I couldn't stay out for very long because it was over 90 degrees Fahrenheit and I can't regulate my body temperature very well, it wasn't as scary as I thought it would be moving around in it. I was really nervous, but it really wasn't bad at all.

Here's a picture my stepdad took of me in my wheelchair. I'm squinting badly because it was very bright and I'm very sensitive to light, but I still like the picture. I'm also enjoying the ability to wear whatever shoes I want now because I don't have to try to walk and balance in them, so I've got on my first pair of cute sneakers in around 8 years.

Health Update - February 2026

I have realized that it has been years since I gave a real update on my health. So I figured I should do that. 

For reference, my medical conditions are:

- Ehlers-Danlos Syndrome (EDS) - a connective tissue disorder that makes my joints, skin, and blood vessels more stretchy than they should be. This causes frequent partial and occasional full dislocations of my joints and a lot of trouble accessing my veins for drawing blood or placing an IV. 

- Mast Cell Activation Syndrome (MCAS) - a disorder that causes the bodies mast cells (allergy cells) to react to things they wouldn't normally react to. This causes me to have a lot of bad allergic reactions.

- Dysautonomia - a condition that causes my autonomic nervous system to malfunction. Your autonomic nervous system controls the functions of the body that you don't control yourself. In my case, it causes me not to be able to regulate my body temperature properly, and is the cause of my Postural Orthostatic Tachycardia Syndrome and Gastroparesis.

-  Postural Orthostatic Tachycardia Syndrome (POTS) - a condition where the heart rate jumps up too high when the person is upright. This can cause dizziness, shortness of breath, and fainting.

- Gastroparesis - a condition where the stomach empties too slowly. This causes nausea and often vomiting. Mine is mild, so I can keep it under control with anti-nausea meds

- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - a condition where you are constantly exhausted and will never feel fully rested no matter how much you rest. Exercise and activities can make it flare up for days.

- Visual Impairment - Difficulty seeing that can't be corrected by glasses and that gets in the way of doing every day stuff 

 

My EDS has been ok. I currently have 3 places on my body that are giving me trouble, one of which has been an issue for years and I'm just used to it. My right shoulder is painful and keeps partially and sometimes fully dislocating. I don't know what I did to my left elbow, but it is also very painful when I move it. And lastly, the issue that has been going on for years, my pelvis goes all crooked and my physical therapist has to realign it every time I see her. It causes a lot of lower back pain. Overall, however, I think my joints are ok. The only brace I'm wearing is an elbow brace, and I don't even wear that most days. Unfortunately, I am struggling with pain control on bad days because I have been told to stop taking one of the pain medications that I took for a couple of years because it was eroding my stomach lining. However that leaves me with only my prescription pain meds that I only get a small amount of to last me 3 months, so I have to be very choosy about when I take them. It's frustrating, but I do have an appointment with a pain management clinic in the next few months, so hopefully they can help me out with that.

My MCAS kind of waxes and wains in it's intensity, I guess. I have a baseline level of reactions that I usually deal with that generally has me taking Benadryl about once a day if I don't leave the house (more if I do), but then I go into theses flares that last about a month where every few days I will go into anaphylaxis (throat swells shut) and I end up in the emergency room. I haven't had a flare in a few months, which is wonderful.

My Dysautonomia/POTS/Gastroparesis are all under control. There really isn't much to do about the temperature regulation issue, but since it's colder outside right now, I often end up taking a warm bath when I get home from an appointment to warm up, or else I'll stay cold for a few hours. My POTS is very well controlled as long as I make sure to take my meds on schedule, and my Gastroparesis is controlled with one or two anti-nausea pills a day. With that I can usually eat however I want once the pills kick in.

Finally, moving on to ME/CFS. This one is a new diagnosis since my last update. I was diagnosed in December of 2023, but have had it since at least 2019. It is what caused my severe leg weakness back then, and still can cause weakness if I overdo it in physical therapy/physically generally. I hate it, but I'm learning to work around it. I set my alarm for 3 hours before I have to leave for appointments so that I can rest in between tasks while getting ready. I use shower wipes a lot of the time instead of taking an actual shower because showering is exhausting. Sadly I have to spend most of my time resting. I can't stand up for very long, and will often end up sleeping the entire next day after going out. I pretty much only leave the house for medical appointments. I spend most of my time either reading fan fiction on days when my eyes are more cooperative, or watching youtube or movies/shows on days when I can't focus my eyes as well.

Health Update - October 2022

I just realized that it has been 2 years since I last posted a health update. I figure I should probably do that, huh?

For reference, my medical conditions are:

-Ehlers-Danlos Syndrome - EDS (A connective tissue disorder that causes my joints, skin, and blood vessels to be too stretchy. This results in frequent partial or full dislocations of many joints.)

-Dysautonomia (My autonomic nervous system can't control my body functions properly. For me, it results in my body not being able to properly control its temperature and Postural Orthostatic Tachycardia Syndrome)

-Postural Orthostatic Tachycardia Syndrome - POTS (My heart rate gets raises when I sit or stand up. Without medication it would get as high as 160, which can cause you to faint, but with my medication, it isn't much of a problem anymore.)

-Mast Cell Activation Syndrome - MCAS (A disorder that causes the bodies mast cells (allergy cells) to react to things they shouldn't. This causes allergic reactions that can range from uncomfortable to life threatening. My biggest triggers are smoke, cleaning products, and most perfumes/colognes.)

-Gastroparesis (A partially paralyzed stomach.)

-Chronic Migraine (Frequent very severe headaches)

-All of the conditions listed after EDS are commonly found in people with EDS. Doctors think that the faulty connective tissue may be the cause.

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Thankfully, my Mast Cell Activation Syndrome that was in such a dangerous place in 2020 has calmed down a lot. I got on a new medication and I guess also just got lucky, and I haven't needed an epi-pen since Thanksgiving of 2020, so almost 2 years now. I still have to take Benadryl pretty much everyday, often multiple times, but it's usually because I'm really itchy or flushing red on my face and chest, which I can deal with. I can now eat most of the foods I couldn't back then. The biggest food difference is that I no longer have reactions to corn products. That's fantastic because you really don't realize just how many things have hidden corn in them until you have to avoid it.

I spent a lot of this year in vision therapy to help with severe double vision. My vision had gotten so bad that I was having trouble reading at all, so I went once a week to do a lot of eye exercises to train my eyes to work with each other and to get better at focusing them. It has helped a lot and I was discharged from vision therapy last month. It also helped a lot with my balance. I still  have some trouble, but it isn't nearly as bad, and I have some exercises I can do at home that will continue to help.

I am still going to physical therapy once a week to help strengthen my joints and I try to keep up with doing some exercises at home as well. It has really helped over all. I don't have to use any braces when I go out and I've stopped using my walker. I had a setback in the spring of this year when I fell and dislocated my ankle, but it has healed now except for some occasional pain and popping. Unfortunately I've had to reduce the intensity of the work I do in physical therapy because of extreme fatigue and muscle weakness.

If you've been here for a few years, you may remember that in 2019 my legs suddenly became too weak to hold me up or walk for some time. This has been a recurring issue, in both my arms and legs, seemingly caused by overexertion. Luckily, I am now able to recognize the signs when it first begins and can stop doing whatever is overworking the muscles to keep it from progressing. I still have to stop and can't really do much for at least the rest of the day, if not the next as well, but I've got a handle on it now. We've cut back my physical therapy quite a bit to keep this from happening while doing my exercises and now I never reach the point where it starts. I also experience extreme fatigue that we think is related. The fatigue is so bad that I will set my alarm for at least 2 1/2 hours before I have to leave the house so I can lie down for an hour after my shower and then take breaks while continuing to get ready. It sucks, but I'm learning to work with it. We still don't know what causes the fatigue or the weakness, though.

I'm not sure if I've mentioned, but a couple of years ago, I was diagnosed with mild gastroparesis. That means that my stomach is partially paralyzed and food doesn't move through it as fast as it should. It causes a lot of nausea and, for a lot of people, vomiting. Luckily I almost never throw up, but the nausea has gotten much worse over the last few months and I'm having a hard time eating. My doctor has referred me to a specialist for gastroparesis to try to get a handle on it. I'm really nervous about getting a new doctor in my world, but really could use some help with this constant nausea. Because my gastroparesis is mild and I'm overweight, I've always felt silly talking about it. Many people with it are quite skinny and some throw up everything they eat. Because mine is mild in comparison, I don't like to tell people for fear they'll think I'm lying or something. But even without throwing up, I've lost 15 pounds in a month and a half, so I guess I shouldn't feel so silly asking for help.

I think that about covers it. Hopefully I'll have a mod out for you guys soon. :)

Chronic Illness Update - My Mast Cells Have Gone Crazy

You guys have heard me talk about my Mast Cell Activation Syndrome before. It's the allergy disorder that makes me dangerously allergic to so, so much random stuff. Well, it has kicked into high gear like never before. I am now having severe reactions to almost every food. Literally, I can eat rice products and blueberries. My main source of nutrition is now coming from a chocolate flavored feeding tube formula that luckily doesn't actually require a feeding tube. It tastes good, and so I can drink it orally. If I stop tolerating that, though, I will have to get a feeding tube to get nutrition from an extremely hypo-allergenic formula that will require a tube. I am so scared and so depressed over this. I need to loose weight, and I am happy that I am, but I have lost 40 pounds so far just because I can't eat normally. Not because I was actually trying to loose weight actively. Glad for the weight loss, sad that it's because I'm too sick to eat normally now. I lost one of my "safe foods" a few days ago. I have been able to eat broccoli with no problems up until a few days ago. I cooked some up, ate it, and my throat started swelling closed (anaphylaxis). This is so frustrating and scary. I really feel like I don't know what to do, even though I am always thinking one step ahead with my health to keep me from stressing about what might happen. I try to think of "if this common (for my conditions) complication happens, then we will do this", but even though I know what the next step would be, I just feel so out of control. If you're the praying type, please send some my way, otherwise please just keep me in your thoughts. I'm really not doing well, physically or emotionally, but I'm working hard to get the depression under control. It will not control my life!

Flushing From Mast Cell Reactions (My Hair Is Wet, Not Dirty)

Weight Loss Comparison In My Face (From Illness!! - Please Don't Think I'm Bragging. I didn't earn this.)

What's Keeping Me Going

Bard Outfit & Walking Update

** If you downloaded before 8/22/20, please redownload because there was a problem with the texture paths. **

I've made another outfit based on a picture I found on Pinterest. Here's the original image:

And here's my take on it:

I added the lyre on the back to reference the violin the original character is playing. I think it turned out decently well in the end.

There is an issue where the lyre bends and twists with poses, but it looks cool when you're running along, so I'm keeping it. You can't see the twisting from the front anyway. 

It is for both female and male characters and comes in both clothing and armor versions for HGEC and Robert's Male bodies. The armor is light armor. The outfit can be found in the testing hall, in a gift box covered in music notes. The box is sticking out of the central pillar, near the door to Hawkhaven. The box will respawn.

To get to the testinghall open the console and type "coc testinghall" without the quotes. To leave go through the door to Hawkhaven and fast travel.

Download - V2

I hope you enjoy. Now, on to the short health update. I am usually able to walk around the house without the braces, but still require them for anything more than just walking to the kitchen and back to my bedroom. I use my wheelchair when we go out if I can. It has small wheels so I can't push myself, so if my mom needs to use her hands for something else I will use my walker that has a seat on it to take rests. My legs get tired very quickly, and with the tiredness comes weakness again so I really have to pace myself. I have days when the weakness comes back full force and I can't walk again, but most of the time I'm doing pretty well. We still don't know what causes the issue in the first place, and my doctor doesn't want to run any more tests. I may never know, but I've made peace with that. At least for now.

Walking Carefully With Braces

I got my custom knee braces last week. They are wonderful! With them on I can walk around very carefully. I have very little stamina, so once I walk to the kitchen I take a rest in a chair, and once I get back to my room I get back in bed. I've been doing physical therapy each day and am gaining strength back. It's coming back faster than we expected, which is wonderful.

Here's a picture of my braces and my cute leggings:

The braces give me so much stability and also stop the really bad pain I get when my left knee twists to the side (because it keeps it from twisting). They also stop my knees from bending backwards, which in turn keeps my knee caps from dislocating.

As soon as we can get my insurance to cooperate I will be getting custom ankle braces as well. They will be molded to fit my feet and will fix the way my arches collapse when I stand, and will give them stability to help them not roll and sublux constantly. I've been wearing braces from Walgreens, but all professionals involved with my braces agree that they are not enough. I'm excited for the custom ones. With the braces for both my knees and ankles, I should be pretty stable. I just need to keep building my strength back up. :) :)

I lost the ability to walk....

As the title says, last Monday I lost the ability to walk. My legs just gave out under me and I couldn't get up. I spent 8 days in the hospital doing tons of tests and got home at the beginning of this week. We still don't know what happened to cause the issues with my legs, but we know what it is not. I am able to do what I call "shuffle-walking" now, which is me shakily moving without lifting my feet while someone steadies me and helps hold me up. My mom is about to buy a wheelchair online and we'll go from there. We are all hoping that with sturdy braces and physical therapy that we can get me walking again, and we think it will happen. I might not be able to walk "normally" for some time, or possibly ever again, but if I can walk unassisted I'll be happy. I've had a pronounced limp for some time, and on bad days my right leg was already dragging somewhat, so I don't care if my walking looks funny. I just want to be able to function better. Functioning better right now means making my house more accessible, so that is what we're working towards.

Revised About Me - Get to Know Me

My name is Skyler, Skye for short. I am nonbinary and prefer they/them pronouns, but don't take offense to she/her. I am chronically ill and autistic. I love to sing, and spend most of my time either playing video games, modding Oblivion, or watching way too much Youtube. I am very optimistic, which makes a massive difference in how I navigate the world.

I have a few different illnesses. I have Ehlers Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome. POTS and Mast Cell are very frequently seen in Ehlers Danlos patients.

EDS causes my body to not produce collagen properly, and collagen is in every part of your body. It causes my joints to be so loose and floppy that they often partially dislocate. I haven't had any full dislocations yet, but many many EDS patients have dislocations all the time. I consider my self lucky that mine isn't that severe, at least right now. EDS gets worse as you get older so who knows what will happen in the future. :(

POTS is a disorder where your body can't properly regulate your blood flow, so when you stand up blood pools in your legs and feet. This causes your heart to beat way to fast in an attempt to get the blood flowing properly. Unfortunately my heart doesn't realize that that is a very bad thing to do, so I get dizzy when I stand up. Luckily I haven't fainted yet. Many POTS patients faint a lot. Again, I'm lucky not to have it as bad as some people. Taking a shower is hard because POTS is massively triggered by heat, so I have to be extra careful not to fall, and use a shower chair to shower safely. Even with the chair I have fallen a few times when standing up to get out of the shower. Summer is awful for people with POTS because of the heat.

Mast Cell Activation Syndrome is a disorder where the cells that cause allergic reactions react when they shouldn't. Reactions can be triggered by anything. My biggest triggers are perfume, smoke, and most scented products like deodorant or hair products. My mom goes out on the front porch to use hairspray, for which I am very grateful. I wear a cloth filtration mask when I leave the house to help keep me from reacting. It has really been a game changer. It helps so much, but I do still have at least one reaction most days. I never leave the house without my Epi-pen, but thankfully I haven't needed it yet, although there have been a few close calls.

As I mentioned, I am also Autistic, so I don't do well with loud noises or people touching me. I actually like being Autistic, though. It comes with both good things and bad. Some good things are my ability to memorize song lyrics and movie lines really easily, my major love for modding Oblivion and the ability to focus on modding and block out pretty much every thing else. Autistic people call that a special interest. Mine is the Elder Scrolls universe in general. I do flap my hands when I am stressed or excited (two different ways of flapping for two different emotions), and I rock a lot. I'm not embarrassed by those things, which is a majorly good thing, because they really help calm me down and it is very hard for me to go out in public without some kind of soothing repetitive motion. My mom and I actually think that my happy flapping is really cute and it makes her smile whenever I'm excited and start bouncing and flapping.

I hope this has helped you get to know me a bit, and that you'll stick around for my mods and ramblings.

Chronic Illness Update - Not Great

I really haven't been doing well lately. I have some instability in my neck which is causing my vertebra to press into my spinal cord. I also probably have something called a Chiari Malformation, which is where the bottom of the brain slips down into the top of your spinal column, which means it is being squeezed. All of this is causing a lot of neurological symptoms which are really debilitating right now. I have double vision, which makes it very hard to read, and I am so dizzy that sometimes my mom has to help me walk back and forth from the bathroom. I'm constantly dizzy, but it isn't always that severe, and sometimes I can get around the house by holding onto the walls, and on a really good day I can just walk normally, but I have to be really careful not to fall. The dizziness is really bad right now.... I also have a constant ringing in my ears, which is driving me crazy. We're trying to get my insurance to cover MRIs of my neck and brain, but they are stubborn.

Some better news is that I now have physical therapy every Tuesday and Thursday, which is so wonderful. I am getting stronger, and some of the joints that wouldn't stay in are doing better now, Also my physical therapist is just an awesome person, which makes me look forward to PT even more. Over all I'm sleeping better. I struggle with insomnia and sometimes would go for days without sleep, but it has gotten much better lately. I'm really happy about that. Also sense it has cooled down I can go outside without my heart rate jumping way too high and almost fainting. My environmental allergies are getting better because of the shots I get every week. My Mast Cell Activation Syndrome (An allergy disorder where you react to all kinds of weird things, including sometimes reacting with no trigger), is still a mess, but I am on the right track with a new medication to help.

Sadly I can't play most video games right now because the movement of the camera makes me motion sick because of the dizziness. And I can't really do much modding because of the double vision. So there won't be any mods for a while unless something changes. Sorry about that.

Anyway, I just wanted to update and let you know why there won't be any mods for an unknown amount of time. If you are the praying type, I would request a prayer for my medical team to figure out what to do about my neck. If you are not, maybe just some positive energy. :) I hope you all don't mind the current lack of modding and communication. I'm doing the best I can, but I am struggling. But I'm probably the most optimistic person you'll ever meet, so I have lots of hope.

Suzania's House Pics & Short Health Update

Hey guys. Sorry for disappearing for so long. I have been dealing with a lot of pain and my general health has been really not great. However my wonderful stepdad has helped me get a laptop and a bed table so that I can do some modding and playing from bed. I'm still not doing as much as I used to, but hey, I finally changed my Halloween background lol...

Here are some pictures of my character Suzania's house. It is very near Shadeleaf Copse, and so I have named it Shadeleaf Retreat.

I left a lot of space undecorated because I like for Suzania to be a bit of a treasure hunter and display all the cool things she finds in her travels. As usual, I tried to use the local wood in the architecture to help make it seem like it is made from the trees in the area and to match the nearby town, which in this case is Skingrad. 

At this point I don't plan on releasing this house for public use, but I still wanted to show it off a bit. I hope you guys like the little tour.

My Health Issues (If you're interested)

I've been saying for sometime that my heath has not been good, and I thought I'd explain what's going on if anyone wants to know. The short answer is that I have such severe allergies that I feel like I constantly have a sinus infection, and break out in a full body rash multiple times a week, and I also have a connective tissue disorder that makes my joints much looser and floppier than they should be. That sounds great (yay flexibility) until I explain that my right hip has been partially dislocating over and over for the last week and I've mainly been in bed with pillows on either side of me to hold my hips in a more healthy and comfortable alignment. Needless to say, it hurts. I had a doctor's appointment yesterday morning and showed my doctor all kinds of ways that my joints move in ways they shouldn't and got tons of blood drawn for testing. I'm 99% sure that I have something called Ehlers-Danlos Syndrome, which in the simplest explanation means that my the stuff that makes up my connective tissue isn't made properly by my body.

To help with all of this, I am going to physical therapy to help strengthen my muscles because they are doing the main work of holding my joints in place because my ligaments are to stretchy to do their job. For the allergies I am taking immunotherapy shots to try to slowly desensitize my body to the basically everything in nature ever that I'm allergic to. I got my third set of shots yesterday as well.

Now I'm going back to my bed and my pillows because sitting here is really painful on my hips and I don't want it to slip out of place again. I need a brace, but I need to see my physical therapist about that, and I don't know when I can see her next.

If anyone wants to ask a question about all the stuff I just said, feel free to leave a comment, and I should answer to the best of my ability in a day or so. I hope this cleared up anyone wondering why I'm away for so long at a time and then kind of put out a bunch of stuff at once. When I have a good few days I mod like crazy, but right now I can't stand this chair for any longer.