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Managing Fatigue: Sleeping Beauty and the Chronic Beast

Managing Fatigue: Sleeping Beauty and the Chronic Beast

Fatigue is a cruel beast that wreaks havoc in the lives of those of us who live with a chronic illness like psoriatic arthritis. It has no respect in regards to our schedules, plans, or the things we need to accomplish. No matter how hard we work to cage or tame this beast, it always escapes and loves to remind us that it is in control.

Under attack

Fatigue attacks my body in many different ways. Sometimes I wake up feeling pretty darn good and think this is going to be a productive day only to need to lie down for a nap after being awake for just a few hours. Some days it strikes several times throughout a day requiring me to take multiple naps. At times, I only experience an increased level of sluggishness, but as long as I take things slow I am able to check off a few items from my to-do list. My least favorite fatigue attack is what I call the Sleeping Beauty spell. It’s when the beast refuses to allow me to do anything but sleep for an entire day or several consecutive days.

Under a sleeping spell

It’s like the world stops when I am under a sleeping spell. Nothing gets done; the most I am able to accomplish is getting to the toilet and fighting to stay awake to eat at least one meal. I’d like to say that plans get canceled, but unless I am coherent enough to tell my husband to cancel my plans I usually spend the first day out of the sleeping spell apologizing to people. This is one reason why I limit the number of commitments I make that require my physical presence. One thing I find difficult for those who don’t suffer from fatigue to understand is how it messes with my head. When this level of fatigue strikes, my brain turns to mush. I could and have spent an entire day reading a text and still not understand what the other person was trying to convey. And forget about replying to a text, my replies during a sleeping spell look like a hamster ran over my keyboard, they make no sense.

A losing battle

I have discovered that fighting the overwhelming urge to sleep is counterproductive. When I try to push through it I still accomplish nothing and anything I did has to be redone afterward because my brain wasn’t fully participating. For the most part, there is nothing I can do but obey the orders of this beast. One thing I do differently than in the past is to be more aware of how hard I am pushing my body on a daily basis. It hasn’t stopped the attacks, but it has shortened the duration of extended sleep spells. Instead of losing weeks at a time I now lose only a few days at a time. Not ideal, but this chronic gal will take what she can get!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • AuntJane
    3 months ago

    Is there no help for the fatigue? I skipped a photo Society meeting because I was too tired to go

  • CathyD moderator
    3 months ago

    Hi @auntjane, I thought you may be interested in this forum discussion on dealing with fatigue: https://psoriatic-arthritis.com/topic/dealing-with-fatigue/ -Catherine, Community Moderator

  • Kristy. W
    3 months ago

    I totally understand I’ve been dealing with this kind of fatigue for almost a year now and they told me it was just my vitamin B being so low but I’ve gotten shot after shot of it and it helped get my levels back where they should be but i continued to be sleepy all the time and hear my husband gripe and groan about why I’m sleeping so much and how can i be so tired. I have now been diagnoised with PSA even tho my psorasis has been in remission for almost 30 yrs knock on wood that it stays that way . I don’t want to do treatments because of all the side effects that come along with them all. I already have Mitral Valve prolapse and fatty liver disease , if any of you have other things that help please please message me on Fb and let me know . Thanks and i hope you all get some relief also because this disease STINKS.

  • rjnavarre
    7 months ago

    I definitely pay attention to what I’m doing. I’m always paying twice. I pay at the moment and I pay the next day

  • Salbe428
    10 months ago

    I totally agree with the sleep and fatigue thing. I was diagnosed about 2 years ago with Psa and still have not been able to get any meds that agree with me. I left work on disability in 2011 but not the psa. I have many other problems but none bother me more than the sleep thing. I cannot make any sure committments to any thing because I do not know until I wake up what kind of day it will be. I have missed church so much that I don’t know half the people there because they are new. I cannot promise my grandchildren that I will attend birthday parties because I may be contending with the sleep beast, so I know just what Cynthia is talking about and I hate it.

  • dalmav41
    11 months ago

    Good morning fat finger, omg ditto ditto. I can relate, and it’s so frustrating and no one seems to really get it. I tell people what I have and then the next time” they say

    now what do you have”. I wake every 2 hours too. I’m sorry for your troubles with this ugh disease! I wish some good restful days!

  • judith
    8 months ago

    My sleep pattern exactly! So annoying!

  • Fatfinger
    11 months ago

    Yes, I get very tired but rarely sleep because I also suffer from insomnia. When I do sleep I wake up every few hours because I am so stiff from being in 1 position for so long. Then it hurts to move. Sometimes that wakes me all the way up and sometimes it doesn’t. I am tired all day, everyday even if I do nothing at all. I wish my family would understand.

  • John4ns
    2 years ago

    Casey,

    Thank you for referring me to this conversation. Short intro, I was diagnosed about six months ago, but after a several year search trying to identify the source of my problem and being treated in a variety of ways. It was when I got to a rheumatologist that I was diagnosed as PsA and things began to fall into place.

    Making progress but it is the chronic fatigue that is the most discouraging. I’m a writer, but with the tendency to fall asleep in the middle of a sentence, wake up an hour later and have to spend considerable time reconstructing my train of thought.

    Another difficult to bear consequence is that with the severe loss of energy, the burden has fallen on my wife. We are trying to adjust our life and the demands of a home to compensate but tain’t easy McGee.

    Thank you for listening. It’s comforting to know that there is a group who understand. Generally, I rarely mention PsA, just easier to let others think I’m a lazy lout who has an extremely tolerant and gracious wife. The latter part of that statement is true!

  • Casey moderator
    2 years ago

    Hi John4ns! I’m so glad you were able to connect with this article and discussion! I’m sorry to hear about your recent diagnosis, however, it sounds like this may have been an answer you were seeking for a while.

    Thank you for taking the time to share your experience with fatigue with the community. Members like you are what make our community the engaging and supportive place it is! Your tactic to avoid mentioning PsA in order to not have to explain all that is going on is one that many of our members report using. Unfortunately, it can be harder to explain than it is to just let someone assume what they’d like. Very frustrating, but please know this is why we’re here. We understand, and want to support you in any way we can!

    Also, I’m so glad to hear that you have such a supportive wife on your PsA journey with you. That is so incredible, and she sounds like an awesome woman!!

    Thank you again for sharing, we’re eager to read more of your input and updates!

    -Casey, Psoriatic-Arthritis.com Team

  • dalmav41
    2 years ago

    Omg thank you for that story, I’m so mad and sad, today and yesterday the fatigue is horrible. I’m afraid to even drive cause s my head is in a tailspin.

  • VickiN moderator
    2 years ago

    Hi dalmav41, I’m so sorry to hear the fatigue is overwhelming these days. If you’re not feeling comfortable to drive do you have any other options? Some pharmacies in my area will deliver (if not, there is always Uber here!). Fatigue and brain fog can make driving dangerous, so please stay safe for us.
    Sending you a soft hug today,
    -Victoria (Psoriatic-Arthritis.com team)

  • dalmav41
    2 years ago

    Omg thank you for that story, I’m so mad and sad cause this fatigue thing has me completely perplexed!!! I have had to cancel doc Appts., friend outings , going to sports games and fun things with my grandson. My family has no idea! My grandson does, he is so understanding. I wanted to get my pain at the pharmacy was actually afraid to drive.

  • Amyell
    2 years ago

    Sorry, I have PsA but not psoriasis.

  • Amyell
    2 years ago

    I was diagnosed in November of 2016 but my rheumatologist said I’ve probably had it for a long time. The pain is one thing but the fatigue is so hard to deal with. I totally related to this story. It sounded just like me. My husband just doesn’t seem to get it. He’s usually very supportive but I don’t think he gets it. Sometimes he tells me to get up and move, that will Help! But how can you when you can’t even keep your eyes open! I have a very physical job, mail carrier, and most days come home and go straight to bed. I have 2 more years til I can retire. Don’t know how I’m going to make it! Thanks for listening!

  • VickiN moderator
    2 years ago

    Hi Amyell!
    I’m so glad that you were able to connect with Cynthia’s story. Although we wouldn’t wish chronic illness on anyone, there is such a comfort in knowing you are not alone with this pain or these emotions. You said you’re a mail carrier, my goodness! If that’s not the most physical job, right? I can completely understand why you would be totally wiped after work. I hope that with your recent diagnosis you can find some medications that will help treat the underlying condition (and hopefully the fatigue). Best wishes to you, please drop by anytime.
    -Victoria (Psoriatic-Arthritis.com team)

  • Cynthia Covert author
    2 years ago

    Amyell, HUGS!! It is so hard to explain to someone what it is like to experience such debilitating fatigue. There is no pushing through or getting up and moving. Cathy’s advice of showing your husband articles like this is good and has also helped me explain what I go through to my friends and family.

  • CathyD moderator
    2 years ago

    Hi Amyell,

    I’m so sorry to read that you are struggling so much with fatigue, and that you don’t feel understood at home. It can be so difficult. In my personal experience, people just don’t seem to be able to get it unless they have experienced it themselves. Have you thought about sharing some of our articles with your husband? I did share one with a friend and it seemed to help some. I hope there is some comfort in knowing that you are not alone, and that there are people here who understand. Please stop by anytime!!

    Best,
    CathyD (Psoriatic-Arthritis.com team)

  • klhokc
    2 years ago

    I was diagnosed about 6 months ago with PsA and about a year ago with RA. It is calming when I read something that hits the nail on the head and this article does. I believe I’ve had this disease for quite some time as I have been complaining of fatigue for many years. I’ve always been a person that needed a lot of sleep, but this is over the top. And for the last couple of weeks it’s been really bad where I can’t even hold my head up and I could literally sleep just about 24/7. I suppose that is a flare. It’s too bad there is nothing they can give us to help with the fatigue. My pain is “somewhat” under control, but not the fatigue. I know now why I would work all day and come home and literally go straight to bed. I was laid off in August so I don’t have to worry about work any more. I filed for disability and it is looking like it’s going to be approved rather quickly. Unfortunately, I’m not like you girls. I do not have a companion to help with household chores or contribute to the bills. And in the U.S. they make it where you can’t live on your disability alone.

  • Cynthia Covert author
    2 years ago

    Hi klhokc,,
    So happy to hear that your disability claim is going well. Even with my husband and children at home, it wasn’t until I accepted that I needed help and allowed them to help me that my home life improved. Later I was able to accept help from friends and family as well. The best advice I can give you is to allow those who are offering to help you and don’t hold back when someone asks if and how they can help you. HUGS!!

  • Casey moderator
    2 years ago

    Hi klhokc!

    Thank you for taking the time to share with us! I’m glad to hear you’ve connected with this article, and that your disability looks like it will be approved. However, I am sorry to hear about your recent diagnoses, and want you to know we’re here for you! Even if it’s just when you need an ear to listen! Hopefully, other community members can chime in on how to find a caregiver who can help with household chores and bills, like you mentioned. Could you reach out to any family or friends that you might be able to live with or spend some time with? Let us know if you do get to talk to anyone, and how it goes! Regardless of the outcome, we’re here for you, and so grateful to have you in our community. Please continue to keep us updated! I also wanted to share the link to our sister site on RA as well, rheumatoidarthritis.net They have some great content!

    Warm wishes, Casey (Psoriatic-Arthritis.com Team)

  • Ellen G
    2 years ago

    I have only recently been diagnosed with PsA. Before I always wondered why I had days that I was in a fog and fought to stay upright. Now I know why, just having to get used to it. Now, I am not as hard on myself and will nap if I feel the need. My companion is also more understanding now that he knows that I’m not just being “lazy”. He used to get frustrated with me not “accomplishing” what I needed to. Now he is much more concerned with how I’m doing if we are hiking or whatever. He also realizes that it takes days sometimes to recover.

  • Cynthia Covert author
    2 years ago

    Ellen,
    What a difference it makes when our spouses understand that the naps we need or the rest our bodies require isn’t a form of laziness but a form of physical therapy!!! Hugs!!

  • Casey moderator
    2 years ago

    That’s great to hear, Ellen G! So glad you’re taking positive steps in your journey with PsA, and that you have such a supportive companion! Please continue to keep us posted!
    Best, Casey (Psoriatic-Arthritis.com Team)

  • KunyaB
    2 years ago

    Thanks so much, Cynthia, for your post! Having overwhelming fatigue at times has been one of the most challenging parts of this disease so far. My husband and I were rarely idle (shows, concerts, outdoor activities, etc) before this all began so it has been incredibly difficult to put the brakes on. Well, I guess it is really hard for HIM to put the brakes on…as I don’t have any choice. I have just been mainly upset and frustrated as I find it hard to get out the front door.

    I am finding that it is best to just keep the dialogue constantly open and remind my husband that I have huge limitations now. It’s not uncommon for my hubby to schedule events for 3 nights in a row and I have felt like the “party pooper” as I advise him that I can probably only manage 1 of the 3. I have been trying to keep up the best I can, but a weekend extravaganza has me in bed for the next 3 days!

    I think since we have been talking about my PsA so much now, I have arrived at this level of acceptance where instead of being bummed that I can’t do what I used to-I get excited for the things that I can. Happily, he is coming around and accepting, himself, my limitations so we can make the best choices as a team. He is also slowly embracing the idea that it is “okay” for him to do things without me that we used to do together.

    I am lucky that my husband is extremely loving and supportive of me (and likes my company!) and we are currently working on creating outdoor activities and choosing events that I can more easily manage and we can enjoy together.

  • Cynthia Covert author
    2 years ago

    KunyaB,
    Having a spouse that can roll with the punches that our chronic conditions throw is so important! We are lucky ladies!!

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