Posts Tagged Tiredness
When you’re dealing with a chronic illness, there are a lot of things non-sick people say that are annoying. Things such as, “Aren’t you better yet?” Of course not. This is a chronic illness, not a you-have-it-for-a-week-and-then-it’s-over-with illness. You don’t say that, though. You smile and say, “unfortunately not.” Or friends and family might make a comment about how you’ve taken a lot of time off work lately, as if it was your life plan to become disabled. Or they might mention that you don’t go out much anymore…because clearly you prefer to stay in laid up in bed.
But the most jerkish thing people do is act like the fatigue you’re dealing with—the bone wearying, debilitating, sometimes disabling fatigue—is equivalent to how they felt when they ran a 10k that one time. “Just get more sleep,” they’ll tell you. Or, “You need to push through it. We all get tired.” If you weren’t so fatigued you’d punch the guy right in the face. But you are, so you smile and nod.
Even worse than thoughtless friends spouting this nonsense, is when you get the same thing from doctors. You’d think someone medically trained would be taught the difference between fatigue and normal tiredness, but they’re not. There aren’t even terms to differentiate the two, really. So for medical professionals and non-medical professionals alike, I’ve created a list of the top five reasons that fatigue and normal tiredness should not even be considered in the same sentence. (Other than that one, of course.) Feel free to share it with anyone who doesn’t get it.
5. Sleeping “cures” tiredness; it’s only mildly helpful for fatigue.
When you have chronic fatigue, the number one piece of advice you get from well-meaning non-sick people is to get more sleep. It makes sense. They reflect on their own life and think, “You know, when I feel tired, if I get a good night’s sleep I feel better. Sally should try that.” But that doesn’t work for Sally, and you know why? Because Sally has fucking lupus or Ehlers Danlos Syndrome or Rheumatoid Arthritis. Feeling tiredness in your muscles because you ran some extra errands today is resolved by getting a good eight hours of sleep, but do you know what is not cured by sleeping? Sjogren’s Syndrome. Multiple Sclerosis. Umm, cancer.
While it’s true that getting plenty of rest is good self-care that can reduce flares, it’s not a cure-all, and to suggest that it is is belittling. Especially considering that many people with chronic fatigue are often already sleeping much of the day. Some chronic illnesses sufferers can sleep for sixteen or twenty hours a day and still feel fatigued. Or even if they’re sleeping a normal eight hours, they may feel their worst in the morning, just when you’d predict they’d feel best if their issue was lack of sleep. And all of this ignores the fact that for some people…
4. Fatigue can actually keep you awake.
Sounds stupid, doesn’t it? After working hard all day, most people can lay their head on their pillow and be out within five minutes. Not the case with fatigue. I, myself, have a condition called lupus. It’s an autoimmune disorder, which means that my immune system literally attacks my body rather than outside invaders. It’s sort of like friendly fire in a war. My immune cells are like, “Sorry kidney! Didn’t mean to murder you when I was trying to take out that cold virus. My bad.”
So the fatigue I get stems from the fact that my body is working really hard against the onslaught from…my own body. This sort of fatigue can be so overwhelming that it’s uncomfortable. It’s almost like the tiredness equivalent of pain. It simply doesn’t feel the same as what you experience after doing a lot of cardio. It feels more like your entire life force has been sucked out of your body. It’s disconcerting.
You know that indescribable symptom you get when you have the flu? Not the runny nose or congestion. The feeling that you’re just “sick.” It’s like that feeling amplified. And that feeling is uncomfortable even if there’s not actual pain associated with it (which, with most chronic illnesses, there is anyway). This horrible feeling of fatigue can overcome you and actually make it difficult to fall asleep.
If this seems stupid and horribly counterproductive, you’re right! It feels that way to the sick person too. There’s nothing worse than being horribly fatigued, and yet not being able to fall asleep. That’s why a person with chronic fatigue will recoil at your advice to get more sleep. They’re trying and reminding them of their failure only makes them want to cut you.
3. Pushing through tiredness means you get extra work done; pushing through fatigue means you’re out of commission for a week.
This is probably the biggest pet peeve of the chronically ill: the suggestion that they should just suck it up and push through it. That is actually the worst single piece of advice you could give a chronically ill person, and this is why. People possessing average energy stores and bodies that aren’t falling apart can go for a day or week or even month where they’re not getting enough sleep. Sure they’ll feel crappy, but once they take a weekend to really rest, their body will be back to normal. For a healthy person, it might be totally reasonable to push through some tiredness to get extra work done.
Not so for chronically ill people. Being chronically ill is sort of like starting every day on three hours of sleep, regardless of how much sleep you’ve actually gotten. Strike that. It’s like starting the day on three hours of sleep plus you have the flu. A flu that might never go away or get better. (I’m a bundle of laughs at parties, let me tell you.) If a chronically ill person tries to “push through” their fatigue, they could actually make themselves substantively sicker. The immune system that was just sort of nibbling on their kidneys will now go on full attack, or the moderate pain they had in their joints will be turned up to eleven. And, as you can imagine, that increase of symptoms doesn’t just last during the period that they’re “pushing through” their fatigue. It can last for weeks because now they’ve actually made themselves sicker. Telling a chronically ill person to just suck it up and push through the fatigue is like telling a lung cancer patient to just have another five cigarettes. Go ahead! Suck that smoke through your throat hole. It won’t hurt you.
2. Tiredness is to fatigue as a pimple is to face herpes.
Hopefully this article has already made this clear, but fatigue is far far worse than being tired. Have you ever been so tired after a hard day’s work that you literally couldn’t talk? I haven’t, and I’ve worked very physical jobs. I used to set up stages and sound systems for concerts, lifting super heavy stuff in the heat for sixteen hours at a time. I’d be sore and I’d want to get in the hot tub at the end of the day, but I could always talk. Not so with lupus. Sometimes I am literally so fatigued that it is too much exertion to open my mouth and talk. If you knew me, you’d know what a personal tragedy this is. I am a talker. There is nothing I like more than shooting the shit. My husband wooed me by staying up until noon talking to me all night. On, like, fifteen occasions. That’s how much I love talking.
Recently I created a fatigue scale after I realized that doctors don’t have one. It is as follows:
Tiredness for me maxes out at around a 4. No matter how tired I am, I could always make myself run errands if I had to. When I’m fatigued, though, it’s not just that running errands is a bad idea (which it is). Sometimes I literally don’t have the strength, coordination, or mental capacity to do it. So for any non-sick person who’s never experienced fatigue beyond a four, your advice, while well meaning, is useless because you literally don’t get it.
1. Fatigue is a daily struggle; tiredness is a temporary inconvenience.
Finally, one of the worst things about struggling with chronic fatigue is that you don’t know if it’ll ever end. Most doctors don’t take complaints of fatigue seriously, and even when they do, there’s not much they can do for it anyway. We don’t have an opioid-equivalent fatigue reliever. We don’t even have a tylenol equivalent. When a non-sick person feels tired, they know that if they get a good night’s rest or take a vacation, they’ll feel better. There is no vacation from fatigue. You could fly to Aruba and you’d be just as debilitated.
That’s why the douchy “just get a good night’s sleep” comments sting so badly. If you had even half an understanding of what it’s like to live with this sort of fatigue, there’s no way you’d suggest that. Do you really think someone is this debilitated and they hadn’t even considered, umm, I don’t know, sleeping more. Of course they’ve tried sleeping more! They’re sick, not a moron.
So please. If you’re someone who’s lucky enough not to struggle with chronic fatigue, don’t be a douche. It’s really easy. Just treat the person you’re talking to with respect and assume they have as much common sense as you do.
Background and Purpose: Poststroke fatigue (PSF) is a common debilitating and persistent symptom after stroke. The relationship between PSF and motor and cognitive function remains inconclusive partly due to lack of control for effects of depression and use of insensitive measures. We examined the relationship between PSF and motor and cognitive performance using a comprehensive set of behavioral measures and excluding individuals with depression.
Methods: Fifty-three individuals poststroke (16 female) were included (median age: 63 years, median months poststroke: 20 months). Poststroke fatigue was quantified using the Fatigue Severity Scale (FSS) and cognitive performance was measured with the Montreal Cognitive Assessment, simple and choice reaction time (SRT and CRT) tasks. Lower extremity motor performance included Fugl-Meyer Motor Assessment, 5 times sit-to-stand test (5 × STS), Berg Balance Scale, Functional Ambulation Category, and gait speed. Upper extremity motor performance was indexed with Fugl-Meyer, grip strength, and Box and Block test. Spearman correlation and stepwise linear regression analyses were performed to examine relationships.
Results: Two motor performance measures, Berg Balance Scale and Functional Ambulation Category, were significantly correlated with FSS (ρ = −0.31 and −0.27, respectively) while all cognitive measures were significantly correlated with FSS (ρ = −0.28 for Montreal Cognitive Assessment, 0.29 for SRT, and 0.29 for CRT). Regression analysis showed that Berg Balance Scale was the only significant determinant for FSS (R2 = 0.11).
Discussion and Conclusions: Functional gait, balance, and cognitive performance are associated with PSF. Fatigue should be considered when planning and delivering interventions for individuals with stroke. Future studies are needed to explore the potential efficacy of balance and cognitive training in PSF management.
Video Abstract available for more insights from the authors (see Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A287).
Stroke can lead to ongoing communication problems, but recovery is often possible.
Unfortunately, we often judge people on how well they communicate. From the outside, a person who has difficulty speaking may appear to have difficulty thinking, too, but this is not necessarily true.
For a person who has had a stroke, the ability to think and communicate depends on the part, or parts, of the brain that have been affected.
Having a stroke can be a frightening and frustrating experience. Not being able to tell people what is going on in the aftermath can extend the trauma.
Friends and family members, for their part, can also find themselves tongue-tied. They may feel embarrassed, lost for words, or they may think that this is no longer the person they once knew.
Post-stroke rehabilitation can help people to regain some or all of their skills. Speech therapists specialize in communication, but nonspecialists can also play a key role.
It is important for friends and relatives to understand that what a person expresses on the outside, after a stroke, is not necessarily what is going on in their head. They should also remember that, although a person faces new challenges after experiencing a stroke, they are still the same person.
This article will offer some tips from people who have “been there” that can give us the necessary skills for helping someone get back to communicating after a stroke.
How does a stroke affect communication?
A stroke is a brain injury that results from bleeding or a blockage in the brain. The effects can be sudden or gradual, and the damage may impact various aspects of mental and physical health.
- Motor skills
- The senses, including reactions to pain
- Thinking and memory
A stroke can affect a person’s use of language in a variety of ways.
Not only can the processing of language be impaired, but paralysis or physical weakness in the face, tongue, or throat muscles could make it hard to swallow, control breathing, and form sounds.
The type and extent of communication problems will depend on the form of stroke and what kind of injury has occurred. The damage and resulting levels of ability will also vary.
The Stroke Association describe three conditions that affect communication after a stroke: aphasia, dysarthria, and dyspraxia. A person may experience one or a combination of these.
Aphasia, or dysphasia, results from damage to one of the “language control centers” in the brain. While it influences communication, it does not impact intelligence. It may affect just one type of communication – for example, reading, listening or speaking, or a combination.
Fast facts about stroke
- Stroke can lead to paralysis or weakness on one side of the body
- There may be difficulty with thinking, awareness, attention, learning, judgment, and memory
- It can be hard to understand or form speech
- Mood and emotions can be affected.
Damage to a part of the brain known as Wernicke’s area can lead to receptive aphasia.
This makes it difficult to understand long and complex sentences, especially if there is background noise, or if more than one person is talking. The person may feel as if others are speaking in a foreign language. Their own speech may also become incoherent.
If there is damage to Broca’s area, expressive aphasia can result.
The person can understand others, but they will be unable to explain themselves. They can think the words, but they cannot speak them or put them together in order to make coherent, grammatically correct sentences.
A person with expressive aphasia may be able to make sounds or say short words or parts of sentences, but they may miss out important words or use the wrong word. They might have the word “on the tip of the tongue,” but not be able to get it out.
It may seem to the speaker that they are talking normally, but to a listener, it can sound like nonsense. Listeners may believe that the speaker is confused when they are not. They just cannot get the ideas across.
Damage that affects multiple areas of the brain can lead to mixed, or global, aphasia with challenges in all aspects of communication. The person may no longer use language to convey thought.
Dysarthria and dyspraxia
Dysarthria and dyspraxia relate to the physical production of speech sounds.
A person with dysarthria can find the words, but they cannot form them because of a physical problem, such as muscular weakness. This may cause the words to come out slurred or in short bursts. This slurring does not necessarily reflect the person’s state of mind. It is likely that only their ability to communicate is limited.
Dyspraxia involves difficulty with movement and coordination, so that the muscles needed for speech sounds may not work properly or in the correct order. This, too, can affect speech.
Other changes that can make it hard to contribute to conversations include:
- A loss of voice tone, normally used to express emotions
- Fixed facial expression
- Problems understanding humor
- Inability to take turns in conversation.
These can make the person appear depressed, even if they are not.
Some people are aware that they are experiencing these changes. If so, letting others know what the problem is can help to combat the issue.
However, a person with anosognosia will be unable to recognize that anything is wrong, due to a lack of insight resulting from damage to the brain. This can hinder recovery.
Depending on the damage that has occurred, vision and hearing problems can also affect communication and writing ability.
Tiredness is a common result of stroke. Conversation might also be tiring, because it demands so much effort.
After a stroke, stress and personality changes can occur. Stress can exacerbate communication problems, especially if the person becomes impatient with themselves, or if others become impatient.
Mood changes, due to the stroke’s effect on the brain, can further add to the strain.
What does a speech therapist do?
Speech therapy is a key part of rehabilitation after a stroke.
A speech therapist will help people with swallowing; this can be severely impaired, and it has an impact on language production.
Speech therapy can involve practicing forming words.
Language practice activities that speech therapists may use include intensive exercises in:
- Repeating words
- Following directions
- Reading and writing.
Examples of more extensive practice are:
- Conversational coaching
- Rehearsing speech
- Developing prompts to help people remember specific words
- Working out ways to get around language disabilities, such as using symbols and sign language.
Communication technology has expanded the range of ways to practice and improve communication. An example of this is pressing a key to activate a voice simulator.
Some tips from people with first-hand experience
Medical News Today asked two men, Peter Cline and Geoff, about their experience in regaining communication skills after a stroke. Peter, an engineer, had a stroke at the age of 59 when he was just starting a holiday in Tasmania. Geoff, who ran his own business until his retirement, was living in Spain when he became ill.
Both men have worked hard to regain their communication skills.
We asked what advice they would give people in order to help them communicate with someone following a stroke.
They gave us this list of dos:
Songs help some people to relax and communicate.
- Do look directly at the person when you are speaking to them
- Do speak slowly and clearly, but use a normal tone of voice
- Do use short sentences and stick to one topic at a time
- Do ensure there is no background noise
- Do reassure the person that you understand their frustration
- Do write things down, if it will help
- Do find out about the person’s employment, interests and passions – now and before the stroke – and try to relate to these
- Do give people a chance to say what they want to say, without jumping in or correcting them.
They also gave us some don’ts:
- Don’t finish the person’s sentences for them
- Don’t speak too fast
- Don’t push them too much
- Don’t speak to the person while they are driving, for example, because they cannot concentrate
- Don’t assume that because the person is having difficulty understanding, they must be stupid
- Don’t “talk down” to the person, or speak to them as if they are a child
- Don’t keep “rabbiting.”
Geoff told MNT that he feels his communication skills “go up and down.” It becomes harder for him to communicate when he is tired, and when there are more than two people in the conversation.
Both Geoff and Peter have made remarkable progress in their communication skills, and they each offered some words of encouragement for people who have had a stroke.
Geoff’s advice is:
“Take time to recover, and, when communicating, take time to explain, and don’t let yourself feel rushed.”
- Persevere and don’t give up. Things will gradually improve but not as quickly as you want them to
- Expect peaks and troughs in your recovery
- Enjoy relaxing with something you are familiar with, for example, old films, music, or whatever your “comforter” is.
Peter explains that after a stroke, an individual can feel as if they are inside a bubble. “It helps if you can get someone to understand that,” he says.
Activities that can help
Friends and family can engage in regular practice activities to help someone recover their communication skills after a stroke.
It may be helpful to arrange regular slots for communication practice, at a time when the person will not be tired.
Here are some activities for sharing, depending on individual styles and taste:
A photo album can be useful for prompting conversation.
- Songs, especially if the person was a keen singer before. Some people can sing after a stroke, even if they cannot speak, because singing and speaking use different parts of the brain
- Card games that involve the person saying the name of the card
- A photo album, to share and discuss the people and events in the pictures
- A personal file, with information about the person’s life, jobs, and family, in order to provide topics of conversation and nonverbal clues when access to key words is difficult
- A diary, with records of visits, events, and conversations. Friends and family can be encouraged to write in it, to help the person track their progress
- News stories to read in advance and discuss during the session.
If an important conversation is coming up – with the insurance company or hospital, for example – these slots can be a good place to prepare.
Other tips for self-help
If a person has difficulty expressing a word or idea, encouraging them to write or draw what they mean can help. Some people can spell a word, even if they cannot say it.
Strategies that people have used to practice alone include:
- Rehearsing speech sounds, such as vowels and consonants
- Using children’s books to practicing reading and writing
- Reciting poems or nursery rhymes
- Saying the names of famous sports personalities
- Watching the news, and copying how the newsreader speaks
- Persevering in conversation with friends or family, however difficult it is
It is important for friends and family to continue to treat the person as an intelligent adult, and to be aware that while their ability to communicate has changed, their identity has not. They are still who they are, with interests, skills, and a past.
In addition, everyone is different, and the effects of stroke vary. For this reason, there will not be a “one-size-fits-all” solution.
Full recovery is not always possible, but patience, help, support, and practice can go a long way in helping people to regain their communication skills after a stroke.