My chronic illness journey

Camper life with chronic illnesses is both great and annoying. We may be living in our camper but we are still in my mother-in-law's front yard so we don't have access to sewage hookups. We're showering, using the bathroom, doing laundry, and eating in the house. It's great because it gives me my own space to come to that I can lock the door and decompress. Not only am I a spoonie but I'm an empath also. Being an empath I feel everything and can get overwhelmed quickly and very easily especially when I'm exhausted. Having my own space to go and just chill alone with complete silence is golden to me. Plus this sucker can go anywhere I want it to go.

It's annoying though because the way this is laid out floorplan wise the couch is in the way, the dinette I hate, and there's a half wall between the end of the bed and the couch that is in the way when getting on and off the bed. The biggest problem I have though is the height of the bed itself. I'm short, fat, and have spine problems. Climbing up on the bed is a little bit painful. We have come to an agreement that there needs to be some work done on our little home. First thing I want done is the wall and couch moved and a set of steps built at the end of the bed. The hubby wants to change some things but doesn't want to change much. We'll see who wins that argument. Lol

I'm finding that a foldable step stool comes in handy for not only my shortness but also for those days that I can't really raise my arms very much I can stand on the step stool to reach things. I also plan on buying new steps that are removable for the outside and a hand rail. I busted my butt last week because I lost my balance on the top step. Our camper is a 2006 coachman fema trailer so it doesn't have all the bells and whistles others have on them. I like that it isn't top of the line and doesn't have everything on it. I enjoy remodeling things and making things my own. I have been making a list of things that I want to change just because I don't like them and a list of things to change that will help me on bad days. As soon as we're able to get some changes made I'll update this with a list and some before and after photos.

Downsizing has been stressful and I thought I had down sized enough but I was wrong. I'm still downsizing and don't see a light at the end of that tunnel! My advice is if you don't use it on a weekly basis you don't need it.

We still have to put the awning on the camper which has to be done soon because we are going to a campground for Halloween. I need the awning so I can decorate it for trick or treaters to come see a mermaid. I love Halloween and seeing all the kiddos dressed up having fun.

So we decided to do this new thing for us. We had been living in my mother-in-law's house for the past couple of years bc it was empty and someone needed to be living there among other reasons. Well back a couple of months ago through a few different circumstances we all decided it was best if she moved back in with us until we could find us a new place. Long story short my husband is in construction and we had been talking about getting a camper so it's easier for us to move with the job. Well we bought one and had planned to do a few renovations before moving into it. That didn't happen. One of us...me...can't stand living with other family members except my husband including both mine and his parents because well I have been on my own as an adult since I was 20 yrs old for the most part as in had my own place trying to stand on my own feet. I just have problems living under someone else's roof and feel like everything I do is being scrutinized. I also have issues with someone coming in a changing everything I have setup in a place I'm residing in without asking or them putting my stuuf out on the porch when I'm not home. Yes I blew up and yes I showed my true colors. I got called disrespectful because I blew up. Long story short we are now living in the camper. Very few renovations have been done. We moved all our furniture to my old trailer which is nothing but storage now thanks to my ex husband. And almost all of the rest of our stuff is split between my trailer and our camper. We made this change in 2 days. Now we all know how hard any move is on us spoonies. We pay dearly for it. I was already in a small flare from the stress I'd been under then added the exhaustion of moving to it the end result hasn't been very pretty. I spent most of the week in bed. I spent Thursday in severe pain worse than I'd ever been in before but I was able to get relief with a toradol that knocked me out so I slept all day. Then on Sunday the level my pain reached was unimaginable! I tried everything in my toolbox (advil, flexeril, hot shower, laying flat, stretches, walking, balling up in a little ball, even toradol) nothing touched the pain! I finally got so exhausted that my body gave up fighting and shut down for the next 12-14 hrs I slept like a baby. A very painful baby but a baby none the less. I had cried in pain so much I cried myself to sleep. My husband had tried to get me to go to the ER for 2 days and I refused because I didn't want to be treated like a drug seeker. I normally won't take opioid pain meds very often because I prefer to function but Sunday I would have at least tried one to see if it helped. I woke up Monday some time and felt pretty good except being a little sore. I have had a migraine off and on since moving in here. I learned something I really like about living in a camper though... It's much easier to make a camper dark and migraine friendly than it is to make a whole house migraine friendly. Lol Moving to a camper full time is a big decision for anyone but for us as spoonies the decision is something that needs to be considered on a different scale. Moving anywhere is a huge ordeal for us but if you are considering making the move to a full time rver ask yourself 3 questions:

1. Can I give myself the time I need to slowly move the important things at my pace to give my body time to rest everyday and the time that I need to go through my 1100+squ foot house and all its contents so I can downsize?

2. If you need special equipment like a wheelchair or handrails is a camper going to be able to accommodate those items if so what type of camper would work for your needs and would it need any modification?

3. Will my body handle sleeping on a camper mattress, and bedframe or will your mattress be best for you.

I don't have any special equipment that doesn't really fit in here but have decided to add a handrail outside and get some portable steps that aren't quite as far down as the first step on our camper. Some days my feet just don't get that high and I have days I'm very off balance like today so need a handrail as a just in case. We also took the queen size mattress out, knocked down the built in nightstands, and extended the bedframe to accommodate our king size mattress. It's a little harder than it was on the box springs so we will be adding a comfy mattress pad soon. Make sure your rv/camper works for your needs.

Now that we're in ours and my body has caught up some from the move we're gonna enjoy the ride. Just see where this road takes this spoonie next!

Tried talking to my husband tonight. He's not good with discussing things that involve family issues. And even worse when it comes to discussing my past. This week my past has bit me in the ass. 15 yrs ago I screwed my ex boyfriend's friend out of vengeance. About a year later that same friend attempted to rape me. "Thought we still had a connection" was his answer. Haven't seen your ass in a year and you thought we still had a connection! WTF! Anyway for 14 years I've buried that shit deeper than my first husband is buried. I haven't told anybody about it other than my first husband obviously since he was the reason the incident was an attempt not a success. Thought I'd left the life of meth heads and screwing whatever walks and has a dick in the past. Well I was wrong. My husband's cousin left her boyfriend and we helped her move her stuff. Long story short I happen to know the meth heads her ex is running with. Well one of them happens to be the person who attempted to take advantage of me 14 years ago. I haven't told her exactly why I want to blow his dick off with my shotgun but I know I should. I haven't exactly told my husband exactly what's bothering me. It's just another thing added to a long list of things that are bothering me that we don't talk about. I reconnected with the ex from 15 yrs ago which things were said that should have been said 15 yrs ago. Really wish I could tell him exactly what his friend did to me but if I can't even talk to my husband about I sure can't talk to a guy I haven't talked to in 15 yrs. The trip down memory lane has felt more like a fall down a flight of stairs that never end! This is just added to our normal stress bc we live way too close to his mother and grandmother. They are driving us bonkers! I'm not one to jump when someone says jump yet we always end up doing everything they call for on a regular basis. We have no time for us period. And now on top of the already mounting stress my mom called and told me one of my cousins passed away. We wasn't close or anything but it was the last straw that overwhelmed the hell out of me. My husband was so tired he fell asleep on me. I seriously hate anxiety and depression and stress.

Payback... It's normally a bitch regardless of what the payback is from. Fibro payback has been kickin my fat ass since Saturday afternoon after pyrotechnics safety training. So not only am I tired and hurting but after attempting concentrate for 8hrs and still being confused when I left!. I went into training with fibro brain and I came out of training in a complete fibro flare. Lol driving home was very interesting especially being that we was trying to outrun rain. My car is a mustang vert with no a/c so in the hot you gotta drop the top so you don't become a rotisserie chicken. Well we're watching gray storm clouds as we go bc we don't want to get wet. Pulled under our carport and let the top up just in time not to get soaked.

I'm thinking about writing a kid's book. Kinda thinking about a character who's disabled but her disability is invisible. I'm thinking about having her bullied bc she's invisibly disabled and finding a friend in an unlikely place. What do y'all think?

I'm tired. I haven't accomplished much today. Matter of fact I went back to sleep only a couple hours after waking up this morning. I'm about to go back to sleep now. Why am I so exhausted and all I've managed to do is go grocery shopping and sleep? My PTSD has been showing out and has triggered my fibromyalgia and chronic fatigue which has triggered my chronic pain. No my PTSD was not due to military duty. Mine was due to trauma from living with a narcissistic, sociopathic, abusive, son of a bitch who took pleasure in controlling every aspect of my life and tearing me down mentally, physically, sexually, and emotionally. The day I left was the day I survived but now I have been fighting a different battle since then. I fight with my subconsciousness and memories. It's the worst at night when I can't block out the memories and feelings that flood into my dreams and turn my world upside down and inside out. Not getting enough restful sleep is taking its toll. I'm so tired of the nightmares, the exhaustion, the anxiety, the fear of leaving the house, the constant feeling of being followed, and the fear of being found. There are times when my PTSD is taking a nap and I can actually function halfway normal but right now those times are few. Sometimes I feel all alone dealing with this because it's not always something I can explain to people who don't understand how it feels to be on edge every second of every day. It's like a dark stain that just keeps creeping closer til you can't see light at the end of the tunnel anymore. When does it end? I'm going back to sleep now and hopefully get a few hours of uninterrupted sleep.

Y'all know what I'm talking about. The fibro fog/ brain fog/ mental fog. Whatever you call it it's the same thing... The Can't Remember Shit disorder. Lol