People who have a chronic disease or illness may experience any of the following any day of the week, along with the specific symptoms that go with their specific issue:
- constant invisible pain
- extreme exhaustion and fatigue
- lack of focus
- brain fog and confusion
- memory issues
- sudden emotional changes (from grief to anger to apparent joy)
- inability to eat
- the need to binge – uncontrollable hunger and thirst or cravings
These are the natural side effects of simply being in constant pain and having your body put up a hard fight to keep up it’s normal organic functions.
These are the symptoms I have well-documented in my associations with the spoonie community, but I have a lot of personal experience with it as well.
Most people can’t even imagine a life like this until it happens to them. I know I didn’t.
And when it does happen you will find yourself at one point trying to figure out how to stay positive with a chronic disease.
I have some advice from my own experience that I’ll get to here in a moment, once I’m done graphically proving how hard it is to stay positive with a chronic illness.
On top of the physical issues and just dealing with pain on a moment-to-moment basis, and including the obvious mental repercussions of always being in pain, come the difficult life issues and emotional suffering that one eventually has to deal with for long-term, seriously chronic, illness:
- job or income loss
- medical bills or debt
- loss of friends
- people who don’t believe you are sick
- inability to participate
- bills, bills, bills
- how to pay the rent
- suicidal ideation and attempts
- spouses who can’t handle it
- a constant plethora of useless health suggestions
- wearing out family and friends with donation requests
- loss of health insurance – inability to pay premiums
- can’t afford deductible until after an ER visit
- can’t pay a co-pay – skipped doctor visit or call mom
- no money for prescription co-pay
- inability to buy proper groceries
- overcoming eviction notices
- asking the government for help to buy groceries
- taking donations for cat food
- shopping at the dollar store
- applying for assistance from eviction avoidance programs
And I’m sure many could add to the list – these are just my own Hellish experiences.
I’d like to also mention that a lot of this is much worse for those who are young because no one believes that you could be THAT sick and no one knows these long words you use to describe your situation.
It’s a very lonely world to exist in and most of us take comfort in each other and those who understand the plight more than anything.
The Negative Side of Chronic Illness
I have personally been in the midst of daily autoimmune and other physical attacks in my body every single moment of every day for about 9 months since an endometriosis treatment (basically chemotherapy – let’s call Lupron what it is) that has left me with crippling and constant migraines and with fibromyalgia.
While I had wanted to focus on getting an excision surgery for my endometriosis, I find myself now trying to get thyroid surgery to take care of my inflamed nodules that are pressing on my glads and nerves, making life a literal hell.
Prior to this, I was a hard-working individual when I was healthy, and only missed a handful of days a month during my period which I thought was the end of the world (and for those dealing with endometriosis, I totally get how that’s the end of the world).
Oh boy would I trade today for a day back then, though.
It’s made it impossible to work and I’m basically being supported through my mom, a couple of family and friends, and go-fund-me.
The home business I started last year that had successfully taken off has now crashed into nothing as I cannot afford to renew any licensing or keep up with everything. (lost investment)
I can’t quit my job or I lose my insurance, but I’m needing help from others to pay my deductibles (thank God for my angels and fairy godmothers).
And I do have a small 401K, but I am legally not allowed to touch it unless I lose my job which I need to keep for insurance for as long as possible – and honestly have been hoping to go back to once I “got well enough.”
I had a short term disability that covered 60% of my income for the first 6 months, but no one ever mentioned long-term disability claims are very hard to get approved.
I had to hire a lawyer to help me with that one and may not see anything until 2019 while I slowly starve to death and lose my home.
Day by day my “full-time job” has become difficult phone calls to put off creditors and stay on top of the documentation required to approve me off of work and keep my health care going, between constant doctor visits, blood draws, waiting rooms, and all sorts of scary machines to detect this or that.
There are days when the pain is so bad I have to figure out if I need to go to the ER or should just sit and wait. More often than not the answer is to sit and wait for the ongoing testing to be completed.
Waiting and working through all of this is a nightmare and there are millions of people who navigate this and so much, much worse every single day.
I can’t even imagine a terminal illness, although my guilty pleasure is wishing for one so the pain will end.
Counting cute blessings before off to give my blood away for more thyroid tests. . . Today is a super bad crying day but I feel okay underneath it all. Things aren’t that bad. I’ve just got some things to sort out. Easy peasy pudding and pie. . . Not really accurate. Things are right shite and I have no idea how I’ll get through it. But I will. 🌈 . . I want to say I don’t think I could do this without my silent partner, Mr. Cat Mom. #lovecatdad #smileanyway #morebloodtests #ourpainlife #migraineday #pushthroughit #hormonecrazy
How I Manage to Stay Positive
1. Follow a Set Schedule
I think inertia is the hardest hump I get over every day, but the less I accomplish in a day the harder time I have sleeping at night.
I might go days laying in bed with pain and fatigue, feeling like I can’t do anything, but I won’t sleep at all.
Or I’ll sleep for a few days straight and still feel exhausted.
So it helps to have a daily routine between doctor’s appointments to keep me from sinking into despair and depression from sleep deprivation.
At the same time, I know I am working on healing my body and when I over do things I end up hurting myself and with added unnecessary ER visits.
So I limit my schedule to a handful of mandatory things, and beyond that I don’t worry about my day:
- Get Up
- Pills and supplements
- Music and moving time (sometimes I just sit and bounce my knees to a beat)
- Simply Socialize (a post, a picture, a cat hug)
- Something Necessary and Important (do a chore, a phone call, a doctor visit – god forbid if you have to work, but that would go here, too)
- Whatever I want that I’m capable of (watching tv, stretching, coloring – something CREATIVE)
- Bedtime Routine
I like to start the day with my favorite playlist of positive music – I just put it on the tv through YouTube from my bed.
My playlist currently includes Katy Perry’s Rise because it makes me feel like getting out of the bed.
No matter what, by 10am I get out of bed – even if I have nothing else to do that day and it’s just for a minute to take my pills and feed the cats.
If I’m in a lot of pain I might have to go back to bed, but it gives a momentum to my day and makes me get up on days when I really could but just don’t want to.
Also, having a set sleep routine at night is helpful despite my insomnia.
Even if I am still awake at 2am and might get up and watch SVU, it’s much less required if I keep to a bedtime routine around the same time every night no matter how awake I feel.
I use cannabis or benedryl to help me sleep, depending on circumstance.
Without sleep the whole thing goes to the toilet – and sometimes that’s just part of the schedule.
But I have noticed it’s easier to maintain a feeling of normality through a set schedule.
2. Nourish Regularly
Every single person is going to have a different concept of what it means to nourish your body, but it needs to be done one way or another.
If I have a day when I can’t eat, I make it a point to sip water or juice on a set schedule.
You can’t let your body starve when it already has to put up such a fight.
When I force myself to get some sort of nutrition – banana is my favorite go to – I always feel a little more alive and it’s harder to be depressed.
But boy do I know it’s hard to eat when you’re depressed and feel near dying.
3. Interact with People on Social Media
I saw a suggestion from a fellow spoonie who felt that social media is a drag for people who are sick because all you see is a bunch of others who are sick and talking about their horrible lives and symptoms.
I tend to think that’s the opposite of good advice for those of us who are in the lonely part of the spoonie world.
Initially people in my own circles were concerned and seemed to want to know about my illness – I’ve had great support from friends.
But eventually everyone gets back to their lives and it becomes a drag for those in my family (especially my spouse) to have to see pain and tears on a daily basis.
That doesn’t mean it’s less hard on me, but I have had to have some difficult conversations to support my husband who is having a hard time going through this with me – and I totally get that.
I have been able to give him some space and find some friends who understand my situation through Instagram.
There are people like me who wait day after day through immense pain for answers to their issues.
There are people who are learning just like I am how to function in their new limited capacity.
It’s like being born again but no one thinks you’re super cute and no one feeds you when you cry.
Reach out to the other newborn (or longtime) chronic illness groups on social media and find people who are in your boat.
Offer them some comfort and share your own fears and issues.
It feels so good.
I like to post 1-3 times a day, and interact 15-20 minutes or more depending on how I feel.
Going back to social media in the mornings and seeing all the comments and likes from the day before feels like I’m part of the world.
And helping others feel better is always therapeutic.
I feel so blah. Which is an improvement. I used to cry all the time. Now I’m numb and just cry sometimes. Not too bad. I’m trying to sort through this social services stuff and not feel like a burden. . . Every once in a while someone says something that reminds me I am a burden. So I try harder. Then the fatigue and pain overcome me and it’s worse. . . And so I’ll make the best of it and keep trying tomorrow. 🌈 . . I really don’t think anyone can understand if they haven’t been there and slowly watched everything they built slowly fall apart while feeling helpless in pain to stop it. . . It’s not like I don’t want to go back to work. It’s hard to explain to people how hard it is for my mind to function through all this pain. #spooniethoughts #weirdfaceselfie #onemomentatatime #ourpainlife
4. Listen to Music
I don’t know if this is something that helps everyone, but anytime I’m anxious or depressed, in grief, or experiencing any major emotional trauma, I turn to music.
If you can play music – keyboards, guitar, singing – it’s the absolute best for a mood change.
But just listening to certain songs can completely turn you around in the really tough moments.
I have my playlist ready and I know what songs help me with what emotions – I imagine it’s different for everyone.
I’d love to hear what some of your go-to songs are – comment below.
5. Enjoy What I Have
This sounds like the hardest step (one of those “law of attraction” or “positivity” exercises) but it’s factually the easiest.
When all of your money and effort is going toward medical survival it’s hard to exist in a world that throws your deepest desires in your face all the time.
Speaking with my husband the other day, he had a particular depressing moment walking by the Cinnabon and realizing he didn’t have a dime he could get from anywhere just to have a little treat.
That’s hard to handle – even if you consider it a first world problem.
As a chef I can’t even express the frustration of trying to feed my family on a sack of potatoes and some dry goods.
We are reminded every time we are hungry how much we don’t have access to what it is we want to eat at that moment.
But it’s a privileged state of mine and it can be turned around in two seconds by looking at what we do have.
It’s easy to get caught up in the things you can’t have, especially during hard times.
The key is to focus on what you do have and can enjoy every moment that you can.
The second a negative thought comes in I sit and focus on my cats, my husband, my music, my books, my friends on Instagram, my magazines, and anything else I can find that I might get some enjoyment out of.
I push aside the worries of tomorrow – worrying never got anyone anywhere – and I just say, “I can enjoy that.”
And then I can keep going day by day.
That’s all I have energy to write at the moment.
Stay strong. Chin up.
There is something authentically therapeutic about the flavor of snot and tears. I can almost feel my mom’s arm hug me as she tells me that I’ll get through this and we will have so much fun on the other side. This is me yesterday. I’m good now. 👍 🌈 💪 🍭 #uglycryface #snotandtears #feelssogood #whatstheworstthatcanhappen