1. Community
  2. Heart Health
  3. Autoimmune Disorders

Chronic fatigue

Posted , 6 users are following.

ashleigh28711
ashleigh28711

How do you get thru a normal day?  Do you have supportive people around you? What do you say to people who don’t believe you physically can’t work bc the fatigue is so bad due to your illness

0 likes, 5 replies

5 Replies

  • cindy75995
    cindy75995 ashleigh28711

    Posted

    Hi Ashleigh,

    I am Cindy and I am 66 years old next month and very ill.

    I don't waste my time or energy on those types of people.

    I dumped a lot of "emotional vampires" and "crazy makers" from my life.

    Wow! What a relief! I wish I had done that sooner!

    I have Ashes, the wonder cat.

    My beautiful silver tabby, with Lynx markings.

    I passed out in the bathroom, and woke up to worried "Kitty Kisses" on my face. I have had to be creative, to find ways to play with Ashes that doesn't wear me out.

    He sleeps under the sheets with me. (Even through drenching night sweats, that dampen his fur!) He sleeps with at least one paw on me all night long, usually all four. No sneaking out of bed for Ice Cream with out him, he wants some too!

    Pets don't doubt you, they love you as you are, you can cry into their fur, tell them your deepest secrets and on bad days they spend most the day in bed or on the sofa with you. They can make you feel better, by making you laugh. Petting a cat can actually lower your Blood Pressure. So can watching a tank of fish.

    I try to keep people with a positive attitude around me. They don't doubt my lack of energy.

    Maybe if your friends are doubting you - they aren't your friends?

    If it is strangers doubting you, why do you even care?

    I figure what other people think or say about me - isn't my business!

    I hope some of this helps you.

    At least you know I cared enough to reply.

    If you don't answer for a while, I know you will when you have more energy!

    I will see if I can post a picture of Ashes, the wonder cat, to share with you. He will make you laugh.

    Cindy

    • ashleigh28711
      ashleigh28711 cindy75995

      Posted

      Thank you for taking the time to reply.  I also have cats and they have been a source of comfort as well.  

      I needed to work on my self esteem before I got sick so that’s why there’s so much doubt and fear/care over what others might think.  In the beginning of this journey 2years ago, no one believed me bc of my array of symptoms.  Plus the fact that I’ve struggled with anxiety and overthinking helped people make the assumption that it was in my head and my “anxiety” manifesting my symptoms.  This hurt deeply, even from strangers aka doctors bc I was in so much pain and so tired and desperate for someone to help me and make it stop.  My boyfriend at the time also doubted me (he’s now gone).  It messes with you and you begin to wonder “am I really feeling this?” Bc your so confused and desperate.  

      I thought an answer was what I wanted but it only brought more anxiety and struggles.

      I need to accept that this has happened and is happening.  I’ve been waiting for a “magic cure” to make me better but the reality is that I have a chronic illness that will be with me for life.  I’m working on it though by reading self help books and speaking to someone .  

      I hope your journey has been a little easier.

    • cindy75995
      cindy75995 ashleigh28711

      Posted

      Hi,

      Sorry it took me so long to get back to you, I was changing my internet /Wi-Fi company.

      It sounds like you have been through what many of us have been through.

      If one more person tells me, "But you look fine!" I might punch them out!

      I think I have managed, because I reinvent myself. As the disease process progresses, and takes away something else, I find something else I can do to replace it.

      At some point, you may have to take a break from full-time teaching. Have you thought about what you might do instead? What are your options? I think you should explore those now, so you have a back up plan in mind. Then, if you need to take time off, you can adjust easier. (Your english and punctuation should be good. Maybe you could proof read for books, or wedding invitations, for a print shop from home. With computers and faxes, etc. A lot can be sent back and forth and you never get dressed or fight the commute to work. Just a couple of ideas to get you started thinking. I would love to be able to tell you, you can teach forever. But I find I do better if I choose what I can do, instead of getting slammed with what I can't do. Knowing my options in advance - seems to help me cope and keep my sanity.

      I have found that if doctors can't diagnose you, they blame you! Or say you are depressed! Who in the Hell asks for all of this?! Not one doctor has ever apologized for the way they treated me, after I finally had a diagnosis!

      You are an intelligent, educated woman, it breaks my heart your self esteem is so low.

      I am glad you are talking to someone that hopefully can help you.

      You can always email me direct at : I may not have all the answers, but I do understand the aches, pains and exhaustion you feel.

      I have also gotten quite good at researching new treatments your doctors may not know about.

      So, at least you know you can reach out to me, whenever you want. I would not invite you to, if I didn't mean it.

      I have an early appt. tomorrow and need to get some sleep. But please keep me posted on how you are doing and if I can help in any way.

      Cindy

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • ashleigh28711
      ashleigh28711 cindy75995

      Posted

      Thank you. I appreciate your kindness.  I already took a year leave from work this school year. I am attempting to go back in September.  I don’t know what I would do if I wasn’t teaching. I’m not a “think outside the box” kind of person so it’s hard for me to come up with ideas.

      I’m currently on Enbrel and methotrexate and IVIG infusions.  If you have any suggestions in terms of medication or pain and fatigue relief I’m open to them.  I’ve also done a lot of research and sometimes you just get tired of all these ideas and strategies bc I lack energy to begin with so energy to try something new is hard to find.  My energy goes to pt and ot and tryin to live a normal life 

  • muddduck
    muddduck ashleigh28711

    Posted

    Don’t stress about tha non believers. I’ve learned that purdy fast. Jus do yu. Yur tha important one to worry bout, yu really don’t need tha extra worry of someone that is to shallow to feel empathy an compassion. Take care of yourself hun. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.