FMS

Fibromyalgia and my fight against it

Overdue Health Update – June 2022

Posted by ARadioGurl on June 21, 2022
Posted in: Daily Life, FMS, History. Tagged: , , .

Roller-coaster of a few years since my last blog update. Had a new roof put on my house in early 2021, had to get surgery for my dog’s right rear leg in 2020, and have been busy tinkering on my VW bus, the Benz, vintage computers, and antique radios. Health-wise I found a new set of doctors in early 2020, before the pandemic begun. I had hoped for a quick recovery from a number of issues, but it’s been a slow recovery and at times a fight.

I have severe allergies, very severe, far worse than I believed. Years of them being untreated have turned them into a primary flareup trigger and a source of migraines. After a year and one half of working with my primary to make sure my bloodwork was healthy (no more anemia or vitamin D issues, yay!) and experimenting with various allergy meds, I sought out a sinus/allergy specialist, started allergy treatment a month after my first appointment, sinus surgery a couple months later. Before beginning treatment I was seeing upwards of 25 migraine days a month, seeing relief only a couple of times a year, which coincide with low pollen/allergen months.

I saw major improvements after the sinus surgery, immediately I could breath better than I have in years, then, as the weeks went one I noticed less migraines, less flareups, less attacks. The allergy immunosuppression treatment itself is rough on me, causes my sinuses to become inflamed and, when allergens are high, sick, weak, foggy. I’m still early in the treatment, but I’ve seen a lot of improvements and overall feeling better. I should see significant improvements over the following year, especially once other health issues are resolved.

Due to the immunosuppression treatment I put house and fleet repairs on hold. Being sick for 5-6 days a week took up the time I was spending working on repairs and maintenance. Stopped working outside when I couldn’t be outside for more than 10 minutes before headaches would begin and lymph nodes would swell, going out to the garage caused similar issues, then I noticed that drywall dust was making me extremely sick. I can mostly handling being outside now, the garage itself doesn’t both me as long as I’m not out in it all day, but it may be some months before I can handle drywall dust again.

I’m fighting an infection, have been for years. Heat makes it flareup, painfully, but it would often turn dormant, sometimes for months, usually weeks at a time, making it hard to find the right treatment. Many treatments would turn it dormant, some worsened it, but eventually one that worked was found. There are side effects, heat sensitivity, headaches, exhaustion, chills, they come and go, but overall they are lessening as the infection clears up. No clue how long before it’s completely clear, but it’s been a long battle.

Things are rough right now, this past year has been rough, but improving week by week. The infection should continue to clear up over the following months, and I should see significant improvements with my allergies. Partner has been helping with a lot of the yard work and house maintenance, but I’m really looking forward to when I can go outside and not worry about headaches or the infection flaring up. Anemia is under control, vitamin deficiencies are under control, bloodwork is looking great, I’m ready to move on.

Anemia Hell

Posted by ARadioGurl on April 4, 2018
Posted in: Daily Life, FMS. Tagged: , , . Leave a Comment

Anemia is hell, or at least the kind I have is. After the hurricane hit Florida last September I started getting sick and never fully recovered. December and January I pushed myself hard with energy drinks, due to traveling and house repairs. I started having headaches every morning that never went away, my heart-rate was constantly high, I was constantly cold and I couldn’t do chores or even cook dinner for myself. Worst part, doctors would blame my issues on my fibro and I believed them at first.

Eventually I blamed the issues on mold. I had found serious mold in my kitchen in January and had to gut the sink area and build a new countertop. When the shitbirds were squatting in my house, the sink had leaked, possible for a couple of years, causing the particle board of the cabinets and drywall behind them to become moldy. After that I gutted part of my office/lab where I had an ant issue, found a small bit of mold, not enough to make a person sick though.

Exposure to that mold would make me sick for a day or two, so it made sense that mold was causing my health issues. I was wrong, as I remained sick and wasn’t getting better. The house was smelling good again, my sinuses were clearing, but I was not in good shape.

With my health was going to hell I quit energy drinks, quitting caffeine helped before. Even after the caffeine detox I started passing out every day. Usually around lunch time or shortly after color would drain out of my skin, I would become extremely chilled, then have trouble remaining conscious. At the worst it caused mental issues, confusion, word slurring, there were a few times that I started babbling pure gibberish. The mental impairment was scary, I could barely function. That coupled with the fatigue attacks causing me to pass out made me realize that I was becoming anemic again.

Everything about being anemic is horrible. I’m not sure what is worse, the weak immune system, infections, lack of sleep, fevers, the exhaustion, or the headaches, but I think it’s that I could only function during the day. By 5pm the fevers would have taken me out of commission, rarely would I feel better before the next morning. Sleep was nearly impossible, five or six hour was normal and upon rising I would have horrible headaches. If I tried to exercise, the headaches would worsen. These weren’t the only major issues I had.

Wounds, from minor to major would become infected, even if I cleaned and treated them. The infections made them itch so badly I couldn’t sleep. Wounds would take a minimum of 3-4 weeks to heal, then leave scars. In addition this was the first time in a few years that I had reoccurring sinus infections.

The anemia really made it seem like my body was falling apart. But once I realized what was happening, I bumped up my B12 and made sure my folate intake was healthy. It has been nearly two months since I was at my worst and I am recovering.

The headaches have gone away, I’m passing out less and less often. My cold tolerance is returning and I’ve mostly kicked the sinus infections. I still get tired easily, prone to low grade fevers (possibly due to fibro), evenings can be hard, but I’m sleeping more also. My heart rate is slowly trending down and my wounds are healing. One of the best parts is that wounds no longer become infected, they just heal with normal amounts of scarring.

Two and one half months left for initial recovery.

Hurricanes Do Not Agree with Fibro – Irma and the Aftermath

Posted by ARadioGurl on April 4, 2018
Posted in: Daily Life, FMS, History, Uncategorized. Tagged: , , . Leave a Comment

Originally written back in November 2017, then never posted due to me getting sick.

 

As a Florida resident I have to keep an eye on potential hurricanes. Tropical storms have never been an issue, unless I need to drive through flooded roads, but hurricanes I don’t mess with. In the twenty years I’ve been in Florida I’ve seen quite a few cat 1, 2, and 3 hurricanes. I’ve had giant old trees fall yards from the house I was staying in, and see roofs ripped off buildings where I have worked. Hurricanes are stressful and post cleanup can be exhaustive, not a good combo when one has Fibromyalgia. While my thirty years old home is in a good location, on a good grid and my street has never flooded, none of that helped during Irma.

Hurricane Irma came through and it was not as severe as it was expected to be, but the local utilities haven’t been maintaining their lines. Before I moved to South Florida the utility lines were always kept clear, after moving back I discovered massive overgrowth across the entire grid. Two months ago I had the power company out to see about doing line clearings, it was scheduled for the end of September, but because of the hurricane they still haven’t done the clearing. Luckily during Irma the overgrowth didn’t damage the lines around my house, but did damage the lines further back in the grid. The power line damage from overgrowth caused us to be without power from before the hurricane hit us through the entire week.

The house itself took no damage during Irma, front yard looked untouched, yet the backyard looked like a tornado went through it. Trees and bushes in the backyard were all pushed westward, branches twisted around branches. My orchid tree took the most damage from the wind, it looks like half a tree now that all the leaves and branches are on one side of it. My lemon tree took almost no damage, although we lost most of the lemons. Most homes in the neighborhood had little to no damage, but there was plenty of yard cleanup.

First day after the hurricane was bearable. Without electricity we had no AC, but the weather had not warmed back up. It was fairly easy to start on limited cleanup and it seemed like I was going to be in good shape. On the second day the Florida summer heat returned, along with mosquitos. We had a tiny generator to keep our fridge running and a fan on us, even still the late afternoon left us overheated and exhausted. Thankfully I kept my Quell unit charged, so while the fatigue grew, the pain was kept managed.

The hurricane hit us on a Sunday night, power was restored to us Friday afternoon. I was struggling to function at this point, having slept only a few hours each night. When power came on, and stayed on, that gave me an adrenaline rush that allowed me put the well system back online, but not much more than that. Over the next few days I struggled to sleep, then struggled to stay awake. I managed to take the plywood off the windows, one window a day.

After that, it took over a month for me to recover. I struggled with sleep over the following weeks, each week sleep improving by a tiny bit. Each day I felt extremely drained, heavily foggy, struggling to do the most basic of chores. I could mostly keep up with work, but at the expense of house chores and personal projects. I flared up bad and was in a flareup for most of October. The flare would occasionally become extreme and my immune system was weak. Got sick a few too many times over the past month. Now it is early November and I’m starting to feel more like myself. I’m able to keep up with my chores and have resume work on my projects. I have good days and I have bad days, but the good days are starting to outnumber the bad days again.

Sleep is so important to manage fibro, the entire body weakens without enough of it. It was a hard recovery, something I hope to not have to go through again. If we get hit with another hurricane I have a nice generator ready to keep a couple of window units running.

 

Anemia – A Year Later

Posted by ARadioGurl on May 18, 2017
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A little over a year ago I began treatment for B12 anemia, aka pernicious or megaloblastic anemia. At beginning I saw many substantial improvements, especially with fatigue. At the time I even stated that it had stopped my crashes, but that wasn’t true. The seemingly random crashes went from regular to rare. If I don’t push myself too hard I may not see an anemia attack for weeks, but with the return of the summer heat combined with my morning power walks, I’ve had a few more attacks than I’m used to. The most recent attack happened yesterday, triggering a full flareup.

During my lunch break I climbed up on the roof to work on patching it before the rainy season. The weather was nice with a good breeze, so I didn’t experience overheating like I did last time I was up there. I was able to get my work accomplished in about 30 minutes and came down feeling decent. A couple of hours later I was at a doctor appointment and informed her of my morning power walk and the roof work that day. She commented on how energetic and perky I seemed, to which I responded that while I was feeling good at that time, I could feel my body starting to get weak. A couple of hours later, at dinner, I took all my supplements, including extra B12 to help fight the attack, but before I knew it, I was chilled and passing out.

I’m not exactly sure how to describe the feeling of the anemia attack. My body starts to feel off, motor controls may be okay, but everything feels heavy and tired, but usually not painful. As the attack worsens muscles get weaker and I start to feel a chill, not long after this my eyes get heavy and hard to keep open. Bad attacks, like yesterday evening’s, are rare, but they can trigger painful fibro flareups. When the flare began I could still get around the house and was planning on cooking an easy dinner, but the pain started to get worse making it hard for me to use my right hand/arm for anything. The pain kept on worsening, evolving from simple aches to more powerful pain spikes throughout my legs and arms, and extreme stiffness in my shoulders. That’s when I turn the intensity of my Quell up as much as I can handle.

With the Quell turned up as much as it can, I’ll start to huddle under blankets, trying to warm myself from this increasing chill. The blankets help, keeping breezes off me, as even a gentle warm breeze may trigger shaking. At this point the pain may be bad, but is usually manageable and I’ll pass out. This is what happened last night. As the air conditioner blew cool air throughout the house, I covered myself with blankets, turned the Quell up, and passed out for an hour.

Upon waking back up I will often find myself warm, unless it’s a particularly bad incident. Yesterday’s was one of these bad ones. Waking up was a struggle, I would pass back out for seconds then re-awaken. The chill had lessened, but I still chilled easily. My head felt like it was in a balloon and my muscles were hard to move. Took over a half hour before I could move from the couch without assistance (it’s why I keep crutches around the house). Once I was able to move, I could feel my body tiring again, but it was after 8pm and I was good enough to get ready for bed. I knew it was bad when I couldn’t get a new trash bag into the trash barrel, I gave up after a few tries.

Thanks to, what doctors and research tells me is the fibro, I barely slept for the first 5-6 hours in bed. I feel asleep for good around 4am waking up shortly before 8am. I felt meh when I woke up, I was still in a flareup. Shoulder muscles were stiff, walking wasn’t easy, and motor skills were definite reduced. I tried to put a trash bag in the trash barrel, then gave up. I wasn’t surprised when I had a second attack after lunch today, I didn’t try to stop it, I let myself pass out. I woke up an hour later and was able to resume work.

Even though I get foggy during some of these attacks, only the worst stop me from being able to work. It is far easier for me to type out a string of bash commands or code a routine than it is to come up with words during conversations. Even right now as I type this blog entry, if I try to talk to someone else in the room my speech is slow, my mind easily blanks, and I forget words. One of the reasons I was happy to go into software engineering was because it is easier for me to code than to hold conversations. I’m fortunate to have a career that I can maintain throughout these health issues.

I would be happier if these anemia attacks completely stopped, but they may not, it’s possible that there can be permanent damage. I used to experience anemia attacks like this when I was an undergrad 15+ years ago, rare but they would occur. I experienced them periodically throughout my 20s, maybe one a month. When the fibro became strong I started experiencing them weekly, the B12 treatments stopped that until recently. I’ve been told it can take a year to fully recover from anemia, even longer or never especially if there was any nerve damage. It’s time to double check my anemia treatment, get my blood tested again, make sure none of my other vitamins have gone wonky.

Fibro and Summer Heat

Posted by ARadioGurl on May 8, 2017
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

Note: Brain fog is an issue today, grammar may suffer.

The Florida summer is finally coming upon us here on the Space Coast. The summer used to not bother me, overall I enjoy the warmth and extra sunlight, but these days the heat will easily exhaust me. Sometimes I end up dehydrated as I am terrible at maintaining hydration in the heat. Other times the heat makes me sick, triggering overbearing headaches, muscle weakness, and exhaustion. I have experienced heat sickness and dehydration periodically growing up in New England and only occasionally in my twenties living in Florida. Since the fibromyalgia became strong in my early 30s I’ve experience this heat sickness regularly.

While I was in my mid-twenties I purchased a home in an area many of my friends refer to as ‘the middle of nowhere’ in Florida’s Space Coast. Where the house is there are only a handful of other homes. Most of the lots are undeveloped with extremely tall pine trees interspersed with palms and well maintained 3 or 4 bedroom homes. It’s a nice quiet place to live, 10-15 minutes from most stores and the highway, about 30 minutes from downtown Melbourne, Fl. Having a quarter acre lot I proceeded to start adding gardens around the house and throughout the backyard. I would spend most of the day outside working on the gardens and house. Back then I could hop on my bicycle and knock out 15 miles in the middle of July, with only a rare flareup of exhaustion the next day.

When the fibro started to get strong I wasn’t able to do the physical labor of gardening, struggling to do the minimum maintenance. Many gardens died out and returned to grass, but I kept the largest most established gardens looking decent. Not only was the physical labor becoming difficult, but I was losing my heat tolerance, often becoming sick when outside. At the worst I would start to suffer heat sickness from standing outside too long. At one point I was on medication that made me highly prone to dehydration, thankfully that has since changed, but bad habits still lead me to occasional dehydration.

Hydration is super important, but I learned bad hydration habits growing up. I worked summers and most weekends helping my parents with their rental properties. While we would bring water with us, there were many times where we could only drink the water after we were done with our work. Same thing in school, you were only allowed water when they said you could drink. You learn to ignore the thirst, instead relying on the watch to tell you when you can hydrate, it is a very bad habit and hard to break.

Earlier this past week I was up on the roof trying to patch my skylights, I’m fairly sure the one above my kitchen is the reason for the bad roof leak(s). For the first half hour I was fine, but towards the end of the job the heat started to get to me, I was overheating badly. I was able to finish the work, get off the roof, grab a gatorade and lay down with the ice pack to help me cool off. I recovered from that by the next morning.

Come Sunday afternoon and a friend is borrowing my garage to do an oil change. I decide to work on the bus for the hour or so we’re outside. I go in and out of the afternoon sun many times, each time leaving me feeling a bit warmer than the last. Eventually I’m moving bus parts around and realize that I can no longer lift a door. Just minutes earlier I was able to lift the door without struggle, but now my leg muscles are starting to hurt as is my head. I struggle to put my work away, my friends are finishing their work. That’s when the dizziness starts to hit, I excuse myself and go inside to lay down with an ice pack. I made one big mistake that afternoon, I drank very little water or other hydrating beverages. Usually I’ll bounce back once i rehydrate.

I felt terrible for hours and even though I was rehydrating, my muscles were aching. I figured that I needed sleep and would be okay the next day. I’ve spent quite a few hot days outside working in the sun and heat, sometimes I’m fine, sometimes I get sick. I can be stuck in traffic in a car with weak AC and overheat, triggering a flareup. I can spend the entire day working on the yard and be fine, then the next week I will barely last two hours. Sometimes the fibro feels like rolling dice, you never know what you’re going to get on your next throw.

I woke up this morning feeling worse than when I went to bed, woke in a full fibro flareup. This is not normal for me, it may be the most severe reaction to overheating I’ve experienced, but nothing about living with fibro is normal. It was hard to move this morning, random pain sometimes triggered by movement, muscle weakness returned along with lots of stiffness. My wrists and hands ache, are stiff, and feel inflamed. My shoulders, arms, and legs are in a lot of pain. To add to it, I’m highly foggy, I lose track of what I’m typing easily and forget words. Luckily bad brain fog like this is rare and should be gone by tomorrow. I ended up having to take the day off from work so that I can recover. My day will be full of turmeric and ice packs, along with gentle yoga and stretches for the achy muscles.

Fighting Infections Continued

Posted by ARadioGurl on April 13, 2017
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The initial infections that prompted my earlier post on infections have almost all cleared up. I started back on a healthy probiotic, very high in helpful bacterias. I’ve been slowly migrating my diet back to a healthier one, along with drinking more water. I had a major deadline last week, which caused me to start slamming back two energy drinks (decently ‘healthy’ ones) per day. Now that deadline is over I’m back down to no more than one a day. But during deadline week I contracted a nice sinus infection.

If I was the only one with the sinus infection I would blame it on allergies, but one of my close friends came down with it around the same time I did, her symptoms were less severe than mine, but a very similar timeline. I expect that it’ll take at least another week to clear this infection up. It is not helping that pollen is so severe there’s a warning not to go outside. I have serious pollen allergies and springtime has triggered sinus infections since I was a child.

The sinus infection itself has been mild, aches, clogged sinuses and sinus headaches, chills late in the day as I wear down, post nasal drip, etc. At first I made the mistake of treating this infection with Sinex nasal spray. I was stressed and exhausted from work and only cared about getting enough sleep to function the next work day. After a few days on Sinex, it stopped working, then I began to suffer rebound effects.

It has been a few days since my last spray of Sinex, my sinuses are feeling better each day, but prone to inflammation and becoming clogged, especially at night while asleep. I’ve tried a couple of decongestants and an antihistamine, but the sinuses are stubborn. They wake me up every couple of hours, sometimes clogged, sometimes draining. Each night a little less severe than the last, but each day I’m a bit more worn out.

There’s a home sinus treatment I used to make with apple cider vinegar, I need to make time to run out and buy some ACV so that I can make it again, plus it’s time for me to find my humidifier and see if that helps. I monitor my heart rate and whenever I get sick it rises by 5-10 bpm. When the infection starts to clear up the heart rate will begin to drop. My heart rate appears to have peaked yesterday, and should be going back down now. If the pattern holds true I expect this infection to last at least another week. In the meantime I’ll find some combination of home or pharmacy remedies that will help.

Fighting Infections

Posted by ARadioGurl on March 21, 2017
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One of the biggest issues I’ve had throughout my life has been infections. As a child I was prone to ear infections, had my share of eye infections and the standard chicken pox. These issues mostly went away when I was teen, only reappearing when the fibro became strong six years ago. At first I was only experiencing chaffing issues that started during my morning power walks. Luckily the issues stay minor until late last spring when I had a minor infection that cleared up quickly with a prescription, followed by summer when I picked up an intense infection that wouldn’t clear up easily.

Last summer’s infection grew and became itchy and painful, spreading across my left arm, but I was able to treat it and clear it up within a couple of weeks. The doctors believed I picked it when I stopped at a bench on a public park. I had a wound that hadn’t closed up yet and the doctors believe it got into the infection when I was sitting on the bench. That infection made it feel like my body was falling apart. At least it and every other infection I had seemed to clear up with treatment. The problem is, the infections kept on reappearing, which according to my doctors “they are most likely due to the fibro”.

The minor infection would sometimes reappear, but it was that bad arm infection that showed back up again. They showed up after experiencing chemical burns from a chemical that I’m highly allergic to. At first the chemical burns were puffy and itchy, but at first were healing. Soon them became infected, most recently they started breaking out with the same infection as last summer. This time I have cream on hand to treat the infection, but this means the infection was never fully cleared up. None of them ever cleared up

Based on what my doctors have told me and the research I’ve done, the issue is with the immune system. A side effect of the fibro is a weakened/compromised immune system. It’s why I’m almost guaranteed to get sick if I’m around another sick person, and why I’m prone to getting food poisoning from food that doesn’t make others sick. Because it’s an immune system issue, I may never be able to fully rid myself of the infections. The prescriptions are enough to make the infections dormant, but it only takes one trigger to reactive them.

I have hopes that an improved diet with probiotics will help. I used to take probiotics regularly, but stopped when I my IBS started to improve and become easier to manage. Probiotics help the stomach regulate its healthy bacteria, which over time can help improve one’s immune response. My diet has also been very mixed, sometimes very healthy other times pizza delivery. I’m not sure if these changes will actually help, but it won’t hurt to try and should at least help my digestion.

Fibro in the Winter

Posted by ARadioGurl on February 1, 2017
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When I was a child the transition of seasons from summer through fall into winter brought with it a slew of sinus issues and a nasty cough. As I aged, fall and winter became worse for me. After high school I ended up in Florida for my undergraduate studies at a tech university. I and my body were happy to be away from the cold of New England. I had no clue why I sick less often and why my allergies and sinuses bothered me less now that I was in Florida, back then I did not care.

Seven or eight years ago I noticed the Florida falls and winters were getting harder on. By late fall I would suffer sinus infections that I blamed on working at a University or roommates. The reality is that my body was becoming weak, combinations of vitamin D deficiency and B12 anemia were making the fibro worse (or maybe the fibro was progressing making the deficiencies and anemia worse). Part of my diet was a B complex supplement that ended up masking the anemia from my blood tests.

Four years ago I would find myself shaking with a chill in a 71f room. I was still undiagnosed and the doctors were passing me from one specialist to another. I needed a space heater in my office due to the AC keeping the room 75f, which would trigger chills. I remember driving home from work on many occasions, heat on full blast at the highest setting, even when it was 80f outside.

Two and one half years ago I was diagnosed with a vitamin D deficiency and started treatment, I had hoped that would solve my temperature sensitivity. The worst of my pain lessened but I still had regular chills and of course the fatigue attacks.

Less than one year ago I was diagnosed with Vitamin B12 anemia and started treatment. Suddenly I was warmer than I had been in years. I no longer needed to set my AC at 78f-81f, but could keep it at 76f. I stopped getting chills at work and the fatigue attacks lessened. Along with cardio and stretches I felt like I was getting stronger for the first time in years, maybe winter would be easier to handle.

This is my first winter with all my deficiencies treated, I even traveled to New England in December. Winter is still hard on me, especially the cold weather. When the weather drops below 50f the fibro is prone to flaring. I feel stiffness in my joints, my muscles are sluggish and heavy, the chronic pain increases by a factor or two, and my sinuses act up. When I was up in New England I was miserable. The fibro was much worse up there, it made me slow and I felt sickly like when I was younger. While the New England trip reminded me of my health limitations, I was happy I made it there and was able to enjoy some of the trip.

These issues slow me down, but they are not nearly as intense as they were a few years ago. I am happy that I can sit in a 70f room and not suffer a chill. I am happy I don’t have to bundle up to go outside in 60f weather. I look forward to the weather warming back up, it is hard to exercise with muscles sluggish like this, and my hand pain always worsens, making work pain. I am not happy that the fibro flares in the cold, but as long as it only slows me down I will survive.

IBS and Vasovagal Syncope Nightmare

Posted by ARadioGurl on January 11, 2017
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After months with only minor digestive issues, I had one of my nightmare IBS attacks last night. These attacks became common when my fibro first became bad, but have been under control for over a year. Last night’s attack was extremely intense and painful, triggering a vasovagal syncope. Even though that was nearly 12 hours ago, I’m still recovering from a residual migraine and widespread weakness.

My digestive system has been acting up since the new year. Until last night most of it was relatively minor, occasional minor IBS attacks and other minor tummy troubles. This pattern of last night’s attack was nothing new; digestion would appear to slow or stop, I would become bloated, start to feel weak and fatigued, eventual malaise, and then comes rumbling and cramps, you can feel the intestines contorting.

I took yesterday afternoon off from work to rest. I blamed it on having trouble getting reliable suppliers for some of my supplements and medicines since the move. I’ve recently had to switch to online for most, plus one of my vitamin supplements is no longer being produced. As I was winding down for bed I noticed that things didn’t seem to be digesting, I felt ill and extremely thirsty. I didn’t need to drink much water before I could feel it sloshing inside of me. That started the rumbling and stomach cramps. The first round felt like I was extremely constipated, my muscles grew weak and my head become light. I had trouble keeping myself upright and the pain was increasing tenfold.

After the found round of cramps subsided I started to feel very warm, but also very tired, I wanted to lay down and sleep. There were more rounds of cramps and bowel half movements. After another round had subsided I tried to grab my phone from the bedroom, incase something bad happened. The pain was intense and I was extremely dizzy, it seemed like the world was swirling around my head. I had to hold onto the walls and furniture to keep myself from collapsing on the ground. I managed to grab my phone right as the next wave of cramps began. This was almost too much for me, I stumbled back to the bathroom as darkness started to encompass me. I was no longer warm, now covered in sweat, I had started to experience the vasovagal syncope.

The last time I recall experiencing a vasovagal syncope was spring 2016, it wasn’t this intense. As I stumbled back to the toilet my sight was mostly blocked by darkness closing in on me. I managed to swing my arm around and drop my phone onto the windowsill. Thoughts swirled in my head as did what little I could see. I wanted to scream from the pain, but my mouth was too dry. Sweat poured down my skin, soaking the floor as I finally lost consciousness.

I don’t believe I was blacked out for long, most likely only for a few seconds. The constipation was gone and my body was now emptying itself. My entire digestive system felt empty and I needed water. I was still soaked from the sweat, head spinning, but recovering. I returned to my bedroom and tried taking a few sips of water, sending me straight back to the bathroom. I was exhausted, I needed sleep, but I needed to be able retain water first. I would repeat this trip back and forth a few more times.

The digestive system didn’t fully recover before bed, but I was able to sip enough water to not feel completely dehydrated. I didn’t sleep well as my stomach ached and I had to use the bathroom multiple times throughout the night. Eventually morning arrived, bringing a less upset stomach, a splitting headache, and minor weakness. Unless I flare up again, it’ll be another day or two before I completely recover.

There was a time where I was having attacks like these regularly, mostly in 2012-2015 when the fibro was at its worst, but I’ve had them as far back as middle school. I’ve never been able to identify triggers and only identified a couple of patterns that may trigger an attack. I started taking betaine hcl and digestive enzyme supplements in 2015, dropping the frequency and intensity of IBS attacks dropped from multiple a month to none most months. That’s why this attack and its severity caught me off guard. I’m sure my body isn’t happy about having to readjust to the new supplements, but I’m pretty certain this latest attack was old leftovers that didn’t agree with me. I need to be more careful when reheating leftovers, I can only assume it was some bad rice.

Change of Pace – Moving Nightmare and Going Remote

Posted by ARadioGurl on December 21, 2016
Posted in: Daily Life, FMS, History. Tagged: , , , . Leave a Comment

Back in June I made a decision that it was time to solve my financial issues. I needed to stop paying rent and a mortgage, that would free up enough money to pay off my debts and get myself back in the black. The best way to do this was to move from South Florida back to my home on the Space Coast. I gained approval from work to go full time telecommute from my house and asked the renters to move out by the end of three months. Three months later they were still living in the house and I went through a nightmare that has absorbed all my time and energy. Starting telecommute was not the easiest thing, but it was mostly due to the condition of the house. Things are only now beginning to settle down and can I enjoy the quiet of working remote.

Three years ago I rented my home out to a family with a clean history and recommendations. Not long after then moved in, they started having financial issues and the wife serious medical issues. I was fairly sick at the time, so I let them stay in the home at a reduced rental rate as long as they handled the majority of the maintenance. I had a close friend sharing the house with them and everything seemed like it was going okay.

Before the year is up the family is all that remained at the house, occasionally reporting to me that something minor went wrong and that they took care of it. I was fighting the fibromyalgia and severe fatigue issues, which made trips to the Space Coast difficult and rare. In addition I couldn’t go in the house as they had pets that I was highly allergic to.

Two months before the family needed to be out, the wife contacted me asking for more time. She was open with me that she had a drug problem and was trying to get clean, but also that they were broke and couldn’t afford to move. She also mentioned that she was having trouble with some people she had sublet to. I could not afford to help her, they had taken advantage of me, and at this point my finances were struggling much worse than I thought. I haven’t been able to maintain a budget since the fibromyalgia became strong, most of my money was going to medical costs or paying the minimums on credit cards leaving little room for anything besides housing and food. I could no longer afford rent in South Florida and a mortgage for a house I couldn’t use. She agreed to be out, then started telling me a huge list of things that went wrong with the house and had not been fixed.

A month before the family needed to be out the house water pump seized up. I have had three months of consistent exercise without a major flareup, I could easily fix the well system myself and give the house a once over to start making lists. I was only scared of having a fatigue attack on the drive up, so I tried to find someone to go with me. I ended up going up their on my own, suffering a mild fatigue attack on the drive up, requiring me to pull off and rest for a while. Once the fatigue attack was over I completed the three hour drive, meeting up with a friend at the house. Meanwhile the wife checked herself into the ER due to what was discovered to be multiple infections, which had entered her heart. The outside of the house itself didn’t look too bad, but it looked abandoned. The yard was severely overgrown, vines were growing up to the roof, and the side fence couldn’t be seen behind the severe overgrowth. Going inside the house was such a bad experience that I was in disbelief.

The center air died a number of years ago, being replaced with window and standalone units. Not ideal, but I was denied financing needed to replace the system. It was one of the reasons I was renting the home inexpensively. Opening the door to the house we were greeted with a very stale, musky, odor, and no air conditioners in the windows. It was dusty, cluttered, clothes strewn everywhere, and a messed up kitchen. The counters were heavily water damaged, most of the lights didn’t work, some cabinets damaged, and the new (just over one year old) fridge abused and broken. I discovered that they had not been maintaining the well system, it was trying to pump dirt from a dirty aeration tank. Those tanks take years to build up that level of dirt. Easy fix at least and off I went, the house was so dirty my allergies were going to go insane.

The wife contacted me from the hospital, begging to stay. Eventually we came to an agreement where her and her family would remain as temporary roommates, as long as they took care of a number of items. I was planning to be up at the end of the month to start cleanup and repairs, to prep the house for me and my boyfriend to move in. At the end of the month my boyfriend and I show up, nothing had changed, everything worsened, and the reality of how bad everything is started to set in. The wife checked herself out of the hospital to ‘help’ clean. The house was in rough shape with evidence of domestic abuse. With help we start to clean up the yard, installed a couple of window units to dry and cool the main part of the house, and start ripping out the destroyed carpeting. Meanwhile the husband starts yelling at his wife, this was a bad situation. We complete what work we are able to and head back to South Florida. Not long after the wife ended up back in the hospital due to her infections.

The day we planned to move a hurricane hits Florida. A friend stopped and made sure that the house survived and was dry. The husband and son were still living there, but according to the wife, still in the hospital, they should be out the middle of the month. Now that the hurricane was past, we proceed with the move. When we get to the house we have to immediately start bagging and throwing stuff away. I am unable to breath in the house, forcing me to wear a mask the entire time I’m inside. We continued to rip up carpet and searched the moving van for air filters and purifiers.

At this point most of what we were bagging were clothes strewn throughout the house. Maybe they were once clean, but at this point they were covered in cat hair and smelled of piss. There was a cat box that had not been emptied in weeks, the pile of dishes had grown and and there was a strong rotten odor. There was so much to do to make the home sanitary, but my fibro was slowing me down, forcing me to prioritize. The first night in the house was horrifying and my allergies were out of control. The second night we came down with severe food poisoning, it was a non-stop nightmare. It took weeks to get the house cleaned up to the point where I was no longer dry heaving, and weeks longer for my allergies to improve.

The family ‘moved’ out within a week of us showing up. The husband took their child, a few important things, leaving his sick wife in the hospital, and telling us that he didn’t care what happened to the rest of their stuff. He was going to be back for his broken car and toolbox. Within a week the wife’s brother comes by to get some family things, we give him what we could find, he is in shock over how bad everything is, “it’s all turned to shit” and something about laziness. He was right, everything went to shit. They wouldn’t replace light bulbs when they burned out, they didn’t even try the reset switch on the garbage disposal when it stopped working. In my first week I fixed almost everything on the list of broken things, most of it was standard maintenance.

I went to try and fix the laundry machine, opening the door to it made me vomit. It wasn’t draining, old clothes sat in water in there for at least a month, decomposing. Luckily it was a well built washer that once I cleared the drain and sanitized it, is working great and doesn’t smell as nasty. The refrigerator took me a hour one morning patching the freezer door back together to fix. The water softener needed a new part that cost me $25 and 5 minutes to replace. I started fixing the stove, but it was so greasy and nasty that I junked it. The dish washer was barely working, it was starting to rust out and the last couple of years of hard water left it with severe mineral deposits. Both were old, both needed to be replaced, I was lucky to get the financing necessary to replace those.

Once the house was livable and no longer required my boyfriend and I to spend every waking minute cleaning, I resumed work remotely.  Over the weeks I have hacked together a decent little office space in my back room. I have really started to enjoy working remote. I probably put in more hours working remote than I did at the office. I can start work earlier in the morning, my lunches rarely last more than an hour, some as short as 15 minutes, and I don’t have panic attacks worrying about traffic. I miss some of the office interaction and my coworkers, but I don’t miss the open office floor plan. I do not miss being distracted by every little movement or unexpected sound. The best part is that it’s easier to manage my fibro flareups.

My stress levels have fallen a lot over the past month. Each day I manage to clean or fix at least one thing with the house, slowly unboxing what we moved up here with. My main car, my 2006 Audi A3, broke down, had to order new vacuum system parts and ignition coils for it. Fixed the Audi a couple of weeks ago and was able to drive to the main office for a day visit. I only have to drive anywhere a few times a week now. Meanwhile I tried to put my ’62 Impala back on the road after a three year sleep, I got the car running and driving well enough to move her into the garage until more important tasks are complete, such as the dumpster.

I have been working remote for about two months now. I wake up most days, take care of a quick project for the house, get ready for work, then sit down in my office and start coding. If I’m in the zone, I can heat up a quick lunch and eat it without destroying my focus. If I’m feeling a bit burned out, I can sit back in the living room and enjoy a relaxing lunch with some good music. Other days I’ll eat a quick lunch, do chores around the house, then return to work. I’ve set up a mini-fridge in my office area, stocked it with various beverages of varying caffeine levels and nutrition shakes. Working remote has allowed me to tweak my office space to work with my ADHD, fibro flares, and occasional brain fog, something that I could never get right working in an open office environment.