The Anxiety of Leaving My House as a Person With Chronic Illness

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Every time I’m planning a trip away from home or a holiday, it terrifies me, especially if I’m traveling alone, because, put simply, I don’t trust my body.

It’s hit or miss if my body will hold out. I plan the best I can, I get taxis instead of buses and I request assistance where I can but it’s still a massive ask, and I don’t know how it’ll go.

I don’t trust that I won’t faint in the middle of nowhere. I don’t trust that I won’t get brain fog and end up lost. I don’t trust that my joints will hold out and I’ll be able to walk. I don’t trust that I won’t get really dizzy and sick and be unable to leave a random bathroom. I don’t trust that my body won’t just give out on me.

Every time I leave my house I take supplies, snacks, extra medication, phone charger or anything else I need in case I get stuck. All I hope is that one day, when I’m more used to my health conditions, this will get easier because for now, leaving my flat for more than a few hours is terrifying.

It feels like my thoughts are constantly racing. My mind has to be constantly occupied or I spiral into panic. As long as I’m busy I’m OK. I do crafts. I work. I practice mindfulness. I play games. I read. I’m constantly on the go. I guess I’ve learned how to manage my anxiety, because it works – as long as I keep myself busy I’m OK. It’s exhausting.

This is just while I’m at home. Once I’m out the things I can do to occupy myself are limited, and my anxiety shoots up. A short trip is OK, like going for a coffee or something. It’s exhausting, but it’s only a few hours. I can occupy myself for that long – it doesn’t take too much out of me. A whole day out is horrible. I’m physically and emotionally exhausted. My mind is constantly fighting against itself. Desperately clinging onto the things that make me feel safe. Desperate to run back home. My mind constantly racing, not stopping on any thought for too long in case it drags me down. It’s exhausting.

This post originally appeared on PoTS & Spoons.

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Thinkstock photo via Oppdowngalon.

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The Ongoing Process of Grief When You Have a Chronic Illness

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Being chronically ill can often mean existing in a continual state of grieving.

You grieve for the person you once were.

You grieve for the loved ones who have left you because it is all “too hard.”

You grieve for the job you lost, the study you had to give up, the volunteer work you devoted yourself to.

You grieve for the parties you are no longer invited to, the weddings, funerals and functions you cannot attend. Loved ones live and die while you watch from your bed.

If you have had surgeries, you may grieve for your body, the parts you have lost and the damage done to an already fragile being.

You grieve for the person who did not know trauma, did not know pain and did not know that some people spend their whole lives in a perpetual state of sickness they can do nothing about.

Many of us have difficulty handling grief. We might feel discomfited by a display of “negative” emotions in a society that praises positivity above all, even to the point of repression and falsity. No one wants to be confronted with a reminder of their own morbidity and mortality, to be made aware that the world is not a safe place.

Those experiencing grief – not only the chronically ill, but those who have lost loved ones or experienced other trauma in their lives – will know what I mean. The looks you get when you admit you are not, in fact, doing fine. The hasty changing of subjects when your feelings come to the fore or the general shuffling of feet and looks of discomfit when you are honest about your life. “Get over it,” is a not-uncommonly heard phrase. “Move on.”

Given that nearly every single person will experience grief in their lives, this kind of insensitivity seems inexcusable. Perhaps the media is to blame – as a society, we do not discuss grief well (or chronic illness, for that matter). In a world that prefers the black and white – person gets sick, they get better, they are happy, the end – there is no room for shades of grey, for those who have to grapple with their bodies and emotions day after day and manage an unwieldy tangle into some kind of life.

It’s time we start acknowledging that grief is a process that can take a lifetime. That it is OK to not be OK. That being chronically ill can take a significant mental and emotional toll, and that we might grieve not only over our illnesses, but for those who have left us because of them.

No one likes loss – especially not those who are in the process of grieving themselves. We may have no choice, but you do. If someone you love is sick, traumatized or otherwise grieving, you have a choice. You can run away and pretend like if you just shut your eyes tight enough, the terrible things of this world may pass you by, like so many bogeymen in the night.

Or, you can embrace the world, and by extension your loved ones, in all shades of grey – happy, grieving, sick, sometimes fine, sometimes not. Reaching out a hand of support – sending a text message, making a call, asking “how are you?” – takes only an instant, but makes an indelible impact. If you open your heart to someone who needs you, you may well find that both of your lives have been enriched.

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Thinkstock photo via tatyana_tomsickova.

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8 Necessities for a Comfortable Hospital Stay

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It’s practically a fact of life. If you are chronically ill, you will probably wind up going to the emergency room and you will probably be admitted at some point. Hopefully it’ll be a short stay, but there are a few items you’ll need to stay comfortable while you are there.

There’s the obvious family and friends to visit and keep you company. The ones you need most are the ones who don’t push too hard, who know when you’re tired and need to rest or who will sneak in a special (diet-approved) snack because hospital food isn’t the best.

There are also some less obvious things you need:

1. Pajama bottoms: Often the nurses will let you wear them under your hospital gown if they don’t get in the way of anything medically. Hospitals can be chilly and that bare bottom look isn’t pretty.

2. Headphones: Hospitals can be loud and hard to rest in. Use them to listen to relaxing music.

3. Earplugs: For when you just want to sleep with no music or noise.

4. Some sort of streaming service: Hospital TV isn’t always loaded with the best options. Watch on a tablet or laptop with headphones.

5. A neck pillow: I use one of those curvy U-shaped ones. Maybe it’s just me, but hospital pillows make my neck feel horrible.

6. A universal charger for your devices: They’re generally longer than the ones that come with your device and your device will most likely be getting a lot of use. The longer the cord, the easier it is to use while charging.

7. Nice lotion: There’s no better time to get yourself nice and moisturized.

8. The softest, most comfortable outfit you own: You don’t want to leave in restrictive, painful clothing. That’s a mistake you don’t make twice.

Those are a few of the things I find necessary for a hospital stay that’s as comfortable as can be. What are yours? Let me know in the comments!

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Thinkstock photo via monkeybusinessimages.

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Vera Haynes Illustrates How Many iPhones You'd Need to Pay to Treat 10 Different Conditions

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After Rep. Jason Chaffetz’s comments about forgoing iPhones to pay for healthcare, librarian Vera Haynes made a series of infographics to show how many iPhones you need to pay for medical treatment.

Read the full version of Vera Haynes Illustrates How Many iPhones You’d Need to Pay to Treat 10 Different Conditions.

Read the full transcript: 

Do you know how many iPhones you’d need to pay for medical care?

One librarian took the time to find out in response to a comment made by Rep. Jason Chaffetz.

“Maybe rather than getting that new iPhone that they just love and they want to go spend hundreds of dollars on that, maybe they should invest in their own healthcare.”

Vera Haynes, 24, a librarian in Hays, Kansas, lives with Type 1 Diabetes.

Using available research and the iPhone 7 (USD $649), Haynes determined…

Asthma = 5 iPhones

Rheumatoid Arthritis = 8.8 iPhones

Stage 2 Chronic Kidney Disease = 10.8 iPhones

Lupus = 20 iPhones

Epilepsy = 21.5 iPhones

Schizophrenia = 23.8 iPhones

Type One Diabetes = 35.6 iPhones

HIV Antiretroviral Therapy = 35.6 iPhones

In Vitro Fertilization (IVF) = 66 iPhones

Breast Cancer = 80.9 iPhones

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woman laying in bed with text 'the reality of fatigue and exhaustion'

The Reality of Chronic Fatigue and Exhaustion

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What exhaustion and fatigue are not:

1. Laziness. It’s not simply not “wanting” to do something or not being bothered.

2. A temporary state you can simply overcome with a little positive thinking or an energy drink.

3. Cured by sleep. Being “sleep tired” and being exhausted are not mutually exclusive but they’re not the same thing. Getting some Zzzs does not equal a body that’s got energy.

4. An excuse. It’s a reason, not an excuse, for why we don’t do certain things, why we may bail on a social occasion, why we don’t have “plans” for the weekend or evening.

You can be so incredibly exhausted, yet feel restless. It can be incredibly frustrating to feel shattered or feel like your brain is cotton candy when you want to do something useful/fun/productive but simply don’t seem to be able to manage it. You can spend a whole day not exactly feeling bored, but finding small things to do or just being totally zoned out, then be unable to tell people what it is you’ve been up to all day. Your day has been spent doing something, but you can’t put your finger on what. The question of “What have you been up to?” starts to feel almost accusatory and impossible to answer.

What exhaustion and fatigue really are:

1. The opposite of glamorous. Sometimes getting out of bed, getting in the shower and taking care of yourself can be monumental mountains to climb. Other days will consist of greasy hair, pasty skin, negative moods, bad complexion, pajamas and bags under your eyes big enough to fit a baby panda.

2. A vicious cycle. When you push yourself and “work through it,” you often pay for it afterwards. Before I left on sick leave for surgery, I spent years working full-time and giving it 110 percent. My evenings were shot, my weekends non-existent; my body was always on catch-up, forever burnt out from using up what little was there for work.

3. Frustrating. Wanting to do more, to be more, when sometimes it’s simply not manageable. Restless yet exhausted, motivated yet defeated.

4. Isolating. Whether this is from your family, friends, work or a social life, exhaustion and fatigue can get in the way of plans and even affect your desire to do the things you would have otherwise wanted to do. If you find others don’t understand or appreciate your reasons for sometimes saying no to going out or feeling “unsociable” and needing time alone, it can be hurtful and leave you feeling lonely.

5. A spiral of feeling judged. Everyone gets tired, everyone gets exhausted from time to time. But to have it chronically, to deal on a daily basis with an invisible illness or fatigue is something else, something you perhaps only really understand fully if you’ve experienced it. Suddenly, being unwell and utterly shattered is like a competition, and it can feel as though we are judged and looked upon with skepticism.

Those, like myself, who experience in-your-bones exhaustion, may be good at hiding it from the outside world. Putting on a brave face, saving up the energy they have to paint a picture of wellness when they’re outside their home, posting statuses or photos on social media. What is portrayed is often not the reality. People create their own story to tell the world.

That said, there can be good times too, moments of enjoyment if we seek them, minutes or hours or days of joy and appreciation when we are gentle with ourselves and are able to better manage the challenges we face. Choose your battles wisely and use the energy you do have on the meaningful things in life.

Follow this journey on InvisiblyMe.

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16 Reasons a Person With Chronic Illness May Cancel Plans

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Chronic illnesses aren’t always predictable, and sometimes that means the plans you made with friends need to be canceled. A flare-up or loss of energy can mean that movie date you planned just isn’t possible anymore, even if you really wanted to go.

People don’t always understand how an illness can make it difficult to go out and socialize, so we asked our Mighty community with chronic illness to share some of the reasons why they might need to cancel plans. Of course, a person with chronic illness may cancel plans for other reasons that aren’t related to their health. But if you’re reading this because you have a friend with chronic illness, the responses below may offer some insight into how their health might affect if they can hang out like you planned. Be understanding and supportive when they can’t make it.

Here’s what the community told us:

1. “I’m feeling beyond exhausted — not the usual exhaustion, but the one that feels like you have have the flu combined with being weighted down by a ton of bricks! The thought of having to socialize when you’re tired and in severe pain makes me angry and frustrated.”

2. “I have endometriosis so I think pain is an obvious reason for canceling (for the people in my life who are aware, that is), but anxiety really is what gets the best of me. I get so worried that something will go wrong while I’m with company (heavy bleeding, immense pain that requires medical treatment, etc.). I also get anxious that I will be in too much pain to be good company, so I worry I will upset those I am supposed to be spending time with and cancel to spare them.”

3. “On weekdays I have no energy. The fatigue is brutal. Couple that with joint pain, swelling and lack of sleep. Then pushing and pep-talking myself to get out of bed, go through my morning ritual, commute on three different freeways, work a full eight-plus hour day, drive back on three different freeways, and finally make it to my driveway — I only have energy to get out my car one time and walk into the house one time. I have nothing left. I cant bring myself to leave or get ready.”

4. “People don’t seem to understand that just because I was fine yesterday or in the morning doesn’t mean I can’t get hit with it all in a matter of seconds. I could have so much energy and go make a coffee and have a shower and then need to lay down for the rest of the day.”

5. “I might have to cancel plans because a fibro flare is in full force with no end in sight. I also would have to cancel plans due to feeling completely exhausted. Sometimes even the thought of having to get dressed to go out causes pain and exhaustion.”

6. “I often have to cancel plans due to a postural orthostatic tachycardia syndrome and orthostatic hypertension flare. It’s so hard to pretend you’re OK when you have a chronic illness, but it becomes impossible when your illnesses flare. It’s so embarrassing and painful to pass out/faint in general, but it’s mortifying to be in public and pass out/faint every few minutes.”

7. “I’m unable to get there. Even if I am feeling good that day, I don’t drive, I can’t handle long public transport rides, and ride shares aren’t always affordable. If the travel is going to take too much out of me, I can’t do it. Getting there is really half the battle sometimes.”

8. “I didn’t get enough hours of rest to bank. Not to mention there’s things going on for several days after and energy is obsolete. Memory is not there. And I can’t physically or emotionally keep up!”

9. “Sometimes the hardest thing is the talking. ‘So what have you been up to lately?’ And you just sit there and think about when was the last time you saw them and besides the damn illness there hasn’t been anything at all. But you’re trying and wanting to socialize so bad and you don’t want to ruin the atmosphere… I’m sick of complaining but I don’t want to lie either. And sometimes it hurts so much to hear what they have achieved while you’re struggling so much to even take a shower.”

10. “I’m too tired to be positive. There are some friends I only like to see on my good days. Also, just getting dressed, going out, sitting and chatting can be really exhausting on bad days.”

11. “If it is someone I haven’t seen in a while, I might cancel plans with them because I’m ashamed of the way some of my medicines have changed my appearance.”

12. “I have chronic migraines. Trying to pay attention, carry on a conversation, or just interact with people is too hard and too stressful. I fake it and smile a lot already, but I’ve learned that self-care is of utmost important, especially as I get older. That means either canceling plans or simply not making them.”

13. “I get excited the days coming up to plans. And use all my energy before the day even arrives. I can never sleep the night before plans. Then on the day I can’t go because I wasted all my energy.”

14. “Even though I’m not in pain at the moment, I know by pushing myself, I’ll be paying for it later (in the form of extreme pain at the end of the day).”

15. “I start to worry if my walker would alarm people since I’m still a college student. I start to worry if people will be smoking or be wearing perfume/cologne that triggers my chronic allergies. I worry if we’re going to be eating because I only trust myself to eat chicken outside of the house — but what happens when they want to go to a BBQ place? Or a place the sells mostly beef? My gastroparesis would have a fit if I indulged in that kind of food. Last but not least there’s the feeling of being left behind because I am in my walker and I’m hunched over and can’t walk fast.”

16. “Doctors appointments! They come before fun personal outings, and last-minute appointments or ones that run too late can make it necessary to cancel other plans! And if you had plans to do something after your appointment, the exhaustion or hard emotions of an appointment can be very overwhelming. We can only handle so much in a day and it may be time to go home and take a nap after an appointment!”

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