Undiagnosed and rare conditions
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New here - at the end of my rope

tpj2011tpj2011 Member Posts: 2 Listener
I’m a 50 yo female that has suffered from chronic exhaustion for years and despite discussing it with my physicians, no one will diagnose anything or give me help.  It’s worsened over the years and I am now having memory and concentration issues.  I am asthmatic and COPD stage 2 but it’s controlled.  I’ve had depression and anxiety for years, but that is also under control now.  I’m not depressed now, but I am at the end of my rope mentally and physically.  I’m exhausted and can’t continue like this.  I just can’t go on like this.  Work is super difficult, but I’m powering through.  The minute I get home, I crash.  I don’t know what to do when no one will make an effort to help me figure out my problem.  I’m not depressed, but I’m done with this.  I need to commiserate with someone in a similar situation.  I’m running out of the strength to fight.

Replies

  • April2018momApril2018mom Posts: 2,869 Member
    Are you seeing a counsellor or therapist? Ask to be referred to mental health services, your GP can help you with this. For more information, please visit this link- https://www.nhs.uk/using-the-nhs/nhs-services/mental-health-services/how-to-access-mental-health-services/

    Best of wishes! 

    What about keeping a diary of your feelings? That could also help. 
  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    @tpj2011 I hear you. It's difficult to push through chronic exhaustion and yes, of course - it's depressing! Regarding getting a diagnosis or help - this is sometimes just the same as asking for 'permission' to be exhausted or imagining that doctors actually have solutions! Actually - you are your best advocate! You already know you have exhaustion and the doctors obviously feel satisfied that there is no specific organic cause. So now the question is - how am 'I' going to manage this exhaustion? That is the question. There is often no specific cure for severe fatigue but here are a few of my suggestions for management:

    • Try keeping a diary of your fatigue and symptoms for at least one year 
    • Think of yourself as having a personal energy bank. How much is in the bank each day and how much can you withdraw before hitting crash point?
    • Begin noting things which make your fatigue worse and things that help 
    • Get out of the habit of asking for 'permission' to be fatigued or permission to rest 
    • Find relaxing ways of unwinding at the end of the day 
    • Minimize your lifestyle
    • See if you can share your load - either with family or paid help such as a weekly cleaner 
    • Create breaks between major activities such as at the end of a working day 
    • Do talk to your workplace about how your fatigue is affecting you. They may be able to make 'reasonable adjustments' - even without a diagnosis. 
    The point of keeping a diary is to begin to separate symptoms more clearly in your head and also create an idea of how to use your 'bank' account (see point 2). It also acts as a way of detecting if there are any specific times in which your fatigue is worse or if there are any specific triggers. This may sound droll but fatigue has a way of just permeating everything so that everything feels as if it's one big fatigue issue. Often a fatigue and symptom diary helps us to become more aware of ourselves. 

    Finding relaxing ways to unwind may seem a really obvious point but actually when fatigue is a major issue in life most people gravitate toward the 'crash' option at the end of the day. This can eventually affect your mental health and also your sleep patterns which can make fatigue worse. See if there is a way you can unwind rather than crash - even if it's only a 10 minute routine that you impliment when you get in. 

    Finding out things that help or make your fatigue worse will be useful eventually becasue you can build special provisions in for coping. I use an old-fashioned method called the 'agressive rest therapy' method when a big event is coming up for example. This means in my case because my fatigue is so bad that I rest in anticipation of a big event and then after. I actually schedule these rests into my diary and using the 'bank' method I can work out how much ART I need for each event. A word of warning though:you may have to be super strict about minimizing your triggers....this will show you who your true friends are! 

    One other thing I didn't mention in the bullet points is that one potential way to not let fatigue rob you of your joy is to stay focused on what you CAN achieve in a day and also to remain able to enjoy the little things. Remember - you are still managing to hold down a job, this is a big achievement. What else do you enjoy?


    A laugh a day keeps the psychiatrist at bay. 
  • dolfrogdolfrog Member Posts: 440 Pioneering
    edited September 2019
    hi @tpj2011
    We humans have a limited working memory (also know as short term memory) capacity, which is much like the RAM of a computer, if we overload it it will crash.
    We prioritise who we use our working memories subconsciously, top priority is coping with any illness we may have, next coping with any causes of stress and anxiety we may experience, next running any alternative compensating skills and abillities we may require to work around our limitations, and next perform our daily tasks. 
    I have a listening disability which causes me to have problems processing what I hear, including speech, and running the coping strategies is exhausting, and the stress and anxiety of the problems communicating with others can cause high levels of stress, which can sometimes just become too much and daily tasks just do not get done, even if I remember that I need to do them. And and post 40 age issue can also be an other contributing factor.
    Sounds like you need more relaxation, and less stress.

    I hope you find the best balance for you to feel less tired. 

     
  • CressidaCressida Member Posts: 828 Pioneering
    edited September 2019
    @LaughingLolly that is such a great piece of advice. I've recently attended a 6 week course on managing inflammatory arthritis. It's all about pacing isn't it and being aware of your limitations. Not powering through but listening to your body. 
  • tpj2011tpj2011 Member Posts: 2 Listener
    Thank you all for your great suggestions.  Doctors just haven’t been a help.  I’ll give your ideas a shot.  It’s nice to hear others have some of the same issues!
  • MoolyMooly Member Posts: 5 Listener
    Hi, Strange question 'But have you always felt you were different, even when you were a child did you know you weren't the same as everyone else?
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome to the community @Mooly. How are you doing today?
    Scope

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