June 25, 2020

Life With Chronic Illnesses, an Introduction

I found this journal site through a group on Habitica. Like I need more sites to keep track of. I already keep a daily journal at 4thewords.com which has been immeasurably helpful over the years, but I keep coming back to this site, wanting to use it in some way.

So, I've decided to keep a (much neater) journal about my life with chronic illnesses. Not that you can call it much of a life.

Currently, I've been diagnosed with bipolar 2 with chronic depressive states, general and severe social anxiety (sometimes with panic attacks), and now critical hypertension. There's some debate about my iron deficiency, but my anemia was so low in the past, I had a doctor wonder out loud how I was even out of bed, let along taking care of five children.

All of these illnesses leave me with crippling fatigue that has been getting progressively worse since about 2018. Oh, I've had it my entire life (but never knew why), but since 2018, it's gotten so bad, I've pretty much stopped doing everything.

See, I'm a 40-something stay-at-home-mom of five and now gramma of one. My kids are 20, 18, 17, 14 and 10; my grandson just turned 1. I'm supposed to babysit him while my daughter works, but I physically can't care for him. Not like I took care of my own kids. I can barely take care of myself. I'm pretty much dependent on my husband of twenty years and the kids to function.

I can't drive anymore because the fatigue makes my brain foggy and sleepy. I'm terrified I'll crash because I have zero reaction time and get easily confused. I can't count how many accidents I've nearly caused, leaving me in tears as I drive home, desperately trying to focus on what I'm doing. The only place I drive to is the store which is two miles away, and I'm a nervous wreck every time.

The chronic fatigue is slowly killing me. Every day I feel a little more drained of life because I literally can't do anything. Getting out of bed is exhausting. Watching TV takes too much concentration. Creative writing is nearly impossible (my brain just shuts down if I try). Can't drive. Can't go for walks. Can't clean the house or do yard work. I can't do anything. I save what little energy I have to try and cook dinner for the family every other night. That's it.

So, what's causing the fatigue?

Who knows. Originally, I thought it was the anemia. My iron was so low, it was barely on their little chart. But OTC iron pills make me violently ill. Easy to digest ones seem to do nothing (or so I thought). Last time I had blood work was 2019, but I never got the results. I slipped into a major depression and just gave up ever getting better. A few months later we temporarily lost our insurance so I never got the results. I got through the year by focusing on when we'd get our insurance back in January or February of 2020 then I could finally get treatment. Well, the new year came, and I finally had an appointment for the end of March only for COVID to hit and cancel it.

Then in April, I ended up in the ER with chest pains and found out I have severe hypertension (high blood pressure). When I called my doctor for a followup, I found out she was downsizing her practice which meant my entire family was being dropped. So there I was with a sudden, life-threatening condition on top of my chronic, untreated illness and no doctor to help me. And at a time when a lot of doctors weren't seeing patients and weren't accepting any new ones.

I finally got into see my husband's doctor last week (a week after I ran out of blood pressure medication). She got me set up with more meds and I go back in a week to talk about my other issues.

I've been completely unmedicated for my mental illness since October 2019 when I ran out of meds and had no way to refill them without insurance. My depression is out of control. I can't sleep because of anxiety. I'm a complete emotional mess most days.

That's me in a nutshell... a mess.

So, I'm going to use this journal to document the process of trying to "fix" this mess.

I have a hard time being hopeful for anything because I always end up disappointed when it all falls apart, and I've been super depressed for months, so this will probably be a lot of whining and ranting, but I hope to show what it's like to have to deal with chronic conditions in a world that expects you to just "suck it up" and not bother anyone.

If these entries make little sense, I blame the many illnesses I have that leave my brain foggy. If things sound disjointed, just know that's how it feels in my head all of the time.

Written by justanotherjen

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Posted On Jun 26, 2020

Thank you for being strong and able to share your struggles. I hope as you go through treatments and take such initiatives to care for your mental health, it will bear good fruits. I will look foward for more of your entries, keep going🙆

Posted On Jun 26, 2020

@elvena_art Thanks. I'm hoping these new doctors can figure out what's wrong and maybe I can have some relief. I've felt like this for so long, though, I'm not sure what I would even do without all of these issues. Energy to go for a walk? Enjoy playing a board game with my kids? Be happy? What does any of that even mean?

Posted On Jun 26, 2020

Thank you for being so open I your journey with your chronic illness. I too have a chronic illness (or a few) . So refreshing to hear/read something so raw.

I do hope you find the answers you are seeking.

Gentle hugs

Posted On Jun 27, 2020

@spooningwithfibro Thanks. I found this site and wanted to use it for something. I already keep a daily rambling, mostly incoherent journal at another site and didn't really need another, but then I thought, I'd focus on just the chronic illness here and, you know, clean it up so the entries are readable. Maybe help someone along the way. Not sure how "daily" it will be because of said illnesses, but I'm going to try to just write about what it's like each day when you're a barely functioning person.

Posted On Jun 27, 2020

It may be good to have a separate diary as it may be good to see the journey and what has changed. You may be surprised with the result!

I'm using this website mainly for my fibromyalgia journey but will share daily life too as that is obviously a big part of it. I definitely think more awareness is needed about chronic illness of all kinds, from the people who suffer and can share their actual experiences/how it does actually feel to live. Its definitely going to help at least a small amount of people and so you should be proud of that ! Yeah I get that itll be hard to keep up daily but if you're struggling, maybe do a quick weekly round up?

I cant wait to read your entries (no pressure of course , I'm just so happy someone else is here with chronic illness too)

Posted On Jun 28, 2020

@justanotherjen after years of facing these struggles alone without prior mental health diagnosis/help, it is usual to feel like that, numb, indifferent, hopeless or even to self-blame. Yet it is different for you now, you are more aware of your condition, took more initiatives, and even have medical help in your mental health. I know slowly, but surely, things will get better 🙆

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