Your Spouse Has Chronic Fatigue? Here Are Ways to Support Them

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The Mighty community shares ways that people can help their partners/spouses with chronic fatigue.

Read the full version of Your Wife Has Chronic Fatigue? Here Are 22 Ways to Support Her.

Read the full transcript:

Your Spouse Has Chronic Fatigue? Here Are Ways to Support Them

“Best thing my husband does: support me in trying different treatments.”

“Sometimes we just need a pair of ears to listen. We don’t always want someone to try and fix things.”

“Someone saying, ‘Don’t get up, I’ll get it for you!’ is a huge relief.”

“Don’t be afraid to voice your own pain or struggles. We complain, so complain with us.”

“Treat me like a burrito…wrap me up in blankets with my heating pad to keep me warm and bring me a bottle of water, ibuprofen and the remote for Netflix.”

“Get involved! Go to doctor appointments and tests and procedures. Get to know your spouse’s conditions.”

“Pain and tiredness is incredibly relative. Make sure you’re using your partner’s rubric for things instead of your own.”

“It’s super important to talk to your spouse, find out what things they struggle with and try to help with those.”

“Make or get us food. Food prep takes so much of our daily energy.”

“Just love me, hold me and let me know you are there for me!”

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Breaking Free From the 'Cage' of Chronic Illness

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It is a fine line we walk when living with a chronic illness.

If we are not careful we can become defined as the girl or guy with lupus or multiple sclerosis or rheumatoid arthritis or a rare disease, etc.

We are so much more than our disease. It’s OK to show others our strength of character, our funny side, our happy side, our lighter side, our talents. It’s OK to share our hopes and our dreams for the future.

image of bird breaking out of its cage with the text 'your illness does not define you. your strength and courage does.'

Don’t let your disease cage you. It has taken so much already, don’t let it take more than necessary.

We have all given up a lot because of our diseases; we haven’t had a choice, but don’t lose yourself to it. Remember the things you love to do, the things that make your soul happy.

If your chronic illness has been overwhelming you and extinguishing more of your life than you want it to, think of ways to reconnect with who you really are.

Let your true colors shine through, over and above your chronic illness.

Follow this journey on My Medical Musings.

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To the Partners of Those With Chronic Illness: I See You, and I Appreciate You

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In the early days of our relationship, when my boyfriend and I used to argue (and we used to argue a lot), I’d often fall down. Flat out flop unconscious. I’d pass out and he’d have to rouse me. It was in equal parts humiliating and frustrating. I didn’t want to do it – it was out of my control. It was like my body would literally shut down at the first sign of stress.

This didn’t happen all the time of course, just occasionally, and he’d naturally be panicked and worried (and confused). Perhaps suspicious even – that I was somehow doing it on purpose, faking it. I wasn’t. But I entirely understand why he might think I was. It was “convenient” – a distraction from the heat of an argument. Only I’d black out, so the argument was 500 miles from my mind when I came round.

 

The funny thing about all of this is I’m so stubborn and defensive during arguments that fainting in the midst of it is the absolute last thing I’d want to do. As I’m sure you can appreciate, it’s hard to win an argument when you are unconscious. Nowadays I’m older and (hopefully) wiser, and I try my utmost to discuss rather than destroy when talking with the man I love. I try not to take things personally or immaturely assume that one cross word is going to be the end of us. I try not to “win” in a game where we should be equals. Thankfully I also no longer faint when we do get into a disagreement.

This fainting was a direct and physical reaction to stress. My body couldn’t cope with the extremes and would quite literally shut down. I didn’t know I had Crohn’s disease back then; I just knew the way my body was reacting was far from normal.

Knowing that stress is such a massive source of my physical symptoms has allowed me to attempt to manage it. Of course that’s much easier said than done. But in amongst this assortment of symptoms and barrage of knowledge about an ever-changing condition, where does the other half of me fit in? The man who has to watch as I collapse in front of him, when I throw up after he’s cooked for me, when I writhe in pain in bed next to him?

I feel a great deal of guilt in being “sick” and in love with him. I’m too selfish to leave him, and he doesn’t want me to leave him of course, which is a great relief to both me and our mortgage provider. But due to one of our twosome being in a state of permanent illness, he is the one who has to see the person he loves in pain. He is the one who feels helpless and frustrated for me. He is the one who has to spend nights alone when I retire to bed ill yet again. He is the one. I love him.

And I love all the partners of women and men with chronic illness for their unyielding patience and compassion. It must be hard to maintain your own personality when everyone around you asks, “How is she/he?” before “How are you?” It must be stifling when huge chunks of your conversations are about someone else. So it’s important we remind the people we love they are appreciated. It might be hard for us to tell you that when we are consumed by pain or our own misfortune, but we feel it.

It’s easy to be selfish when you are thinking about your illness 99 percent of the day. I get sad and exasperated and don’t want to feel the way I do. But I am in there waiting for you to pull me out of the doldrums, and remind me I am still more than an illness. I owe you the same courtesy; so please know I appreciate you and everything you do, and often everything you don’t do: every time you don’t roll your eyes when I complain for the 50th time in an hour, when you don’t have a tantrum when we have to cancel a night out, when you don’t show your frustration when you’ve cooked for me and I can’t eat it.

I see it all. I see you, and I love you.

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Thinkstock photo via nd3000.

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29 Things People Don't Realize You're Doing Because of Brain Fog

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If you have a chronic illness, you may have experienced brain fog at one time or another. Brain fog may be a symptom of your illness or a side effect of medication you’re taking, but either way, it can be extremely frustrating to deal with the impairments it can have on your short-term memory and mental functioning. When brain fog hits, you may find yourself struggling to carry on conversations or remember names, dates, events or simple words, which can have a big impact on your personal and professional life.

In order to manage the effects of brain fog, some people have developed certain coping mechanisms or tricks to help them navigate their daily lives. To better understand the ways in which people manage and respond to it, we asked our Mighty community to share things others don’t realize they’re doing because of brain fog. Maybe some of these will sound familiar to you, too.

Here’s what the community shared with us:

1. “Repeating myself unintentionally due to missing or forgetting words in a sentence, and also stuttering words trying to remember words.”

2. “Pretending to comprehend whatever it is you’re saying even though my mind is a million miles elsewhere.”

3. “I take pictures of things I write down (like addresses or shopping lists) in case I lose the paper or leave it behind when I go to the grocery store. I also take pictures of the locked door and dog crate so I don’t get anxious that I left them open – I do this with candles as well so I know I blew them out before I leave town to run an errand and it really reduces my anxiety about accidentally burning down the house with the animals inside.”

4. “I tend to avoid outings and appointments because it’s just too hard to process so much information in a conversation.”

5. “Wearing a nice dress at work. Only my work bestie knows it is because I could only handle figuring out one piece of clothing that morning. Everyone else compliments me and asks what I’m so dressed up for.”

6. “Taking extra long showers because I can’t remember if I washed my hair yet, or I mix up products (conditioner on legs, shaving cream on head), one shaved armpit/leg, to name a few.”

7. “I encourage people to talk about themselves so I don’t have to speak.”

8. “When I know I’m having trouble, I take notes in situations where people don’t usually take notes. People think everything from ‘that’s weird’ to ‘she’s just trying to impress people’ to ‘she must be really organized.’ The truth is it just helps me follow important conversations and bring my brain back around if I lose the thread of what we’re discussing or I forget what I was going to say. It also makes it easier to figure out later if I missed something.”

9. “Taking your medication twice because you forgot that you took it before.”

10. “When I’m going through a thick fog day, I keep all conversation to a minimum. I rarely even text because I know I’ll forget to text people back.”

11. “I talk out loud to remember the things I am doing because otherwise I will forget in about 20 minutes.”

12. “I have to have my husband help me fill out the simplest of forms. It’s embarrassing, frustrating and depressing.”

13. “I forget names. Sometimes I don’t recognize new acquaintances. People think I just don’t care, but really I am struggling to think so much that I need to see a face twice or hear a name on multiple occasions to remember it, and that’s when I’m trying hardest.”

14. “Lists. I have so many lists just lying around my house with groceries, work, things I want to get, etc. When I am able to think of things I put it on a sticky note and forget about it. Leading to multiples of the same list.”

15. “Saying things like ‘top clothing’ instead of ‘shirt’ and ‘toast maker’ instead of ‘toaster.’ Usually people just laugh, and I can laugh it off, but sometimes it’s scary when I can’t remember words I know or people’s names.”

 

16. “I only talk about things in depth or detail via text message. I used to love to have deep and meaningful conversations with my friends and family, and was always told how articulate I am. But now, I’m lucky if I can remember what I was talking about halfway through the third sentence. It’s easier to put together a message via text and be able to pause – stop for a little while – regain my train of thought and come back to what I was saying before I press ‘send.'”

17. “I get snappy. When I lose my train of thought or a certain word I get angry when I can’t remember it, which just makes it worse. It usually just ends with me bursting into tears with frustration.”

18. “I use Waze for even trips I make regularly. Yes, everything is familiar and I ‘know’ where to turn but I don’t know by instinct during brain fog.”

19. “I am forever suddenly trailing off and staring into space. I just forget what’s happening in the middle of a sentence or in the middle of doing something and you can find me just sitting there, zoned out.”

20. “I do little music sounds or small snatches of whistling without realizing. I tell people it’s my brain playing background music while it searches for the thought or words I’ve lost.”

21. “I put absolutely everything in my phone. Names and descriptions of new people. Times of appointments that are only the next day. I have alarms for daily tasks. Post-its everywhere. People think I’m just super organized. Nope. I can’t remember anything without a reminder.”

22. “I get up to do something and then just freeze in space… I’m trying to remember what I got up to do.”

23. “I hesitate in my speech or stutter because I am searching for the right words and get frustrated because I was always known for my eloquence.”

24. “Losing the topic of the conversation and forgetting what I was saying in the middle of the sentence. Not being able to remember stuff by memory in tests. Forgetting friends’ birthdays and invitations I had previously accepted.”

25. “When my brain fog is bad, the large, grandiose words find their way into my vocabulary. It’s because my everyday words were temporary deleted from my brain and these fancy words come forward from the recesses of my memory.”

26. “I often tell my husband random things (like if I took my pain medicine, or some random reminder) because I know he will remember in five minutes whether I actually took my meds or only planned to and forgot.”

27. “I change the subject to cover for my total loss of what we were just talking about. Or I walk away, leaving people wondering if I’m rude, but I really have no idea that we were talking about anything.”

28. “I watch the same shows and listen to the same audiobooks over and over again because I get lost with new characters, plots or even faces if I’m having a bad day.”

29. “I stare blankly at nothing. People ask me what I’m thinking about, because they assume I must be in deep thought. Really, I just forgot what I was about to say, and couldn’t remember anything.”


29 Things People Don't Realize You're Doing Because of Brain Fog
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Being Healthy Is a Privilege

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I consider myself privileged. While my childhood was a bit tumultuous, I now live in a big (albeit older) house on a quiet street in Toronto’s affluent West End with my husband and two kids. I’m a white, cisgender, middle class woman with a decent education and income who has been afforded opportunities that many (especially women) in the world have not. I have access to affordable healthcare, clean drinking water and all the organic, farm-fresh chickens and vegetables I can eat. I can order a gluten-free, vegan pizza at 2:00 in the morning and have it delivered to my front door. And I can afford to tip the delivery person. I’m privileged.

There’s been a lot of discussion around the subject of privilege lately, which I think is really, really good. Racism, income inequality and the wage gap are becoming harder and harder to ignore. But something I’ve noticed is that very few people are willing or able to acknowledge their own (our own – because I surely do it too) privilege. I have conversations with people and walk away just gobsmacked at the sense of entitlement.

And why not? If you grew up in a decent home, went to a good school, have never really struggled for money or a job and your kids (if you have them) are cherubic little angels who rarely step out of line, I can see how you would expect life to just keep going on like that – like one long sunny day. It’s totally reasonable.

Without getting into detail, I think I can fairly and accurately state that I’ve faced some hardships in my life – some admittedly self-made, others completely out of my control. But objectively, I’d still consider myself privileged (for so many reasons I don’t have the time to get into here). So recently, just for fun, I filled out one of those “How Privileged Are You?” quizzes online, fully expecting to be in the top 90 percent.

But one of the questions made me pause.

Do have a chronic illness or suffer from chronic pain?   

Um…

I answered it honestly and lost a lot of points. Like a lot of points. I was no longer in the 90th percentile, that’s for sure.

 

It got me thinking about how many people just take their health for granted, not realizing how many of us are walking around (OK, maybe crawling around) feeling like a sack of rotten potatoes – in pain, struggling to find the energy for day-to-day tasks and in constant fear of long car rides with no bathroom breaks.

And then I got mad. All those people living their lives and not even thinking about their health?!  That was completely foreign to me.  Not a single decision is made in my day without consideration of how it will affect or be affected by my craptastic health.

But why would they? Other than the flu or a cold a few times a year and maybe one scary bout of appendicitis as a kid, they have no frame of reference for an illness that never goes away, no matter how much a person rests or how much medication she takes.

And then I realized – those people, they’re privileged!

It’s not that everyone is entitled to good health, it’s that healthy people are lucky. Lucky! People who don’t have 10 doctor appointments a month, who haven’t had multiple surgeries, who don’t suffer in pain most days are privileged. The frustrating thing is they have no idea how lucky they are.

So…if you’re wondering if you might be one of those people (hint: if you’re wondering and/or if this is legitimately the first time you’ve thought about your health this week – you probably are), here are some things to think about:

If you go to bed every night relatively confident that you’ll wake up in the morning feeling at least halfway decent; if it doesn’t even cross your mind to make a contingency plan or to worry that you might be too sick to go to work or care for your kids or run errands, then you might be privileged.  

If you don’t have to face letting down your friends and family on a consistent basis because you’re suddenly too sick or in too much pain to do that thing you said you’d do with/for them, you might be privileged.

If you don’t live in constant fear of getting sick while driving on the highway and ginormous box stores with bathrooms in the far back corner don’t terrify you to your core, you might be privileged.

If every plane or concert ticket you buy doesn’t absolutely have to be on the aisle, you might be privileged. 

If you don’t spend at least one day a week confined to bed, recovering from regular life (i.e. the things most people do without even thinking), you might be privileged.

If you don’t depend on medication to get you through the day; if you’ve never had to inject yourself and suffer the side effects of nasty chemicals in your body (sometimes worse than the disease you’re trying to treat), you might be privileged. 

medications on bedside table

If the inside of your purse doesn’t look like a small pharmacy (including a tube of lidocaine, extra toilet paper and a change of clothes), you might be privileged.  

If you don’t have to budget energy the way most people budget money, you might be privileged.  

If you can put something on your calendar and know that, barring some catastrophic event, you will be able to keep that commitment, you might be privileged. 

If you don’t often have to give up on something you really, really wanted to do, (think vacation, dinner and a movie with friends, going for a walk in the sunshine) because you’re too sick to move, you might be privileged.  

If you’ve never had to go on sick leave to have surgery, start a new medication or just to recover, you might be privileged.   

If you don’t regularly sit through a meeting, a kid’s recital or church on Sunday while dealing with the kind of pain that would send a “normal” person running for the Percocet and a hot water bottle, you might be privileged.  

If you don’t spend at least a couple or hours a week curled up in the fetal position on the bathroom floor, you might be privileged.  

And here’s the thing – if you are privileged in this way, that’s OK. That’s good! I don’t (most days) begrudge you that. When I was healthy (*struggles to remember a time*), I took it for granted too. I didn’t know how lucky I was.

So here’s what you can do:

Know how lucky you are.

And maybe, let your chronically ill family member or friend know that you know…

Next time he or she has to back out of something at the last minute, be kind, be understanding, be the person who brings him a bowl of soup. Do not be the person who compares chronic illness to that time you had the flu or that UTI you just couldn’t shake. No matter how much you think it is, it’s not the same thing. Do not judge something you do not understand. Do not be the person who rolls eyes, sighs, and complains. Trust me, we would give just about anything to have the privilege of health most people take for granted.

Except pizza. I’m never giving up pizza.

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Please Stop Making Fun of Me for Falling Asleep at 5 PM

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You might think it’s funny when I fall asleep at 5:00 p.m. or throughout the day, you think it’s hilarious that I can’t stay awake through a TV program or a film, but let me explain why that happens. Let me explain why it hurts when you think it’s so funny that I am always tired.

1. It’s not just being a little tired – my whole body aches with the effort of trying to stay awake. I’ve had days where exhaustion just overwhelms. It is fatigue and fatigue is very different to tiredness. It’s very hard to explain, but tiredness can be rectified by a nap or a couple of good night’s sleeps. Fatigue is relentless – your mind and body are tired. Lifting your arm hurts with effort. You can barely string a coherent sentence together and thoughts stay fleetingly in your head before flying away, never to be seen again. You cannot stay awake however hard you try because the effort of staying awake is in itself a huge effort. Think about trying to swim in a pool of molasses with a full near costume on – could you do that? Not easily!

2. I have insomnia and painsomnia and that’s not fun. Insomnia speaks for itself. I tend to go to sleep OK but cannot stay asleep. 2:00 a.m. is my normal wake up time where, if I don’t get up I end up feeling worse. I therefore have made binge-watching box sets of DVDs in the early hours a new art. Painsomnia is something that people without a long-term condition often haven’t heard of. Instead of just being unable to sleep, painsomnia instead is where you cannot sleep because of pain. Usually I wake up because I’ve dislocated or subluxed a joint. Waking up with a hip or knee out of place on a glorious midnight walkabout is not really my idea of fun. If it’s not those, it’s my shoulder making my arm do a great impression of no longer belonging to me! It’s not exactly conducive to a good night’s sleep. The midnight dislocations are inevitably followed by the lengthy relocation process, wriggling about until the glorious pop moment when you know it’s back where it should be. I know then that I need some painkillers and a recovery period so again am to be found on the couch binge-watching box sets. Now much as getting to watch my great DVDs is good, the timing could definitely be better. I’d much rather be watching TV at a normal time and sleeping seven or more hours a night, but my body has other ideas, and so, with an average of a 2:00 a.m. wake up time, is it really any wonder I drop off at 5:00 p.m.? To me I’ve often been awake 15 hours!

3. What takes you 10 minutes has taken me 40 and used every last bit of strength I had left. Now a lot of people use the spoon theory to describe our energy stores. The theory goes that you start the day with x amount of spoons, and during the day everything takes some of those spoons until you have no more left. Most people have the chance to replenish their stores during the day with either food or less taxing tasks. To me, however, there are no less taxing tasks – each one is hard. Some, yes, do take different amounts of my energy, but they all take energy and so before the second half of the day I’ve already run out of “spoons.”

4. You think I’ve been sitting doing nothing all day, when in fact that “nothing” has taken so much effort I’m exhausted. Just sitting takes a lot of energy, especially on a bad day. Ehlers-Danlos syndrome makes any movement difficult, the threat of dislocation looming at all times. It is an effort even using brain power, especially with brain fog when you cannot really even think what your own name is. You have to think about how to get up off the sofa, you have to think about how to do everything to minimize either having symptoms or to make sure you don’t have an accident, e.g. fall or trip, etc.

Having postural orthostatic tachycardia syndrome (POTS) and my other conditions means that maintaining an upright position, even seated, takes effort. My pulse races and so I constantly feel ill from that; it’s exhausting. Added to that I have a mountain of appointments, and every few weeks I have to plan how to get to said appointments – who can take and assist me – and then I have to plan what I am going to say. I find that so many people in the medical profession haven’t heard of EDS, or if they have, many more have lots of wrong ideas about how it can affect you. This means I have to go prepared and read up on things too!! It can be a full-time job. I also complete surveys. It keeps me busy and gets me vouchers to spend on things I couldn’t necessarily afford. These take a lot of brain power and again effort just to sit up doing them.

5. It means you don’t understand what I go through and why I’m so tired. Your teasing, while not meant to be mean, shows me you don’t understand all these problems. You don’t understand just how much it takes for me to live day to day. How hard I find it to do anything, how even sitting takes a lot of effort for me. You don’t see that I don’t like that I can’t stay awake, that I’d much rather be watching programs I like and doing crafts. You don’t understand that however much or little sleep I get I’m still fatigued all the time, and you just don’t see that I don’t choose to fall asleep. It is simply that my body has given up, has no more energy left and has no choice but to shut itself down.

So yes, I do fall asleep a lot in the evenings and yes, I can’t stay awake and am constantly tired. But I believe I actually have good reasons why that is. I’m not after pity from anyone, but some more understanding would be appreciated.

This post originally appeared on Crafty Insomniac.

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Thinkstock photo via cyano66.

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