Fatigued Hope

Hope has been important to me for a while now.  Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health.  But once I’ve got it, I admit that it’s not always that easy to hang onto.  This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.

Right now I am so tired.  Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it.  You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more?  I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep.  It’s really not working.

I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial).  All I want to do is sleep.  Give me a few spare minutes and you’ll find me drift toward my bed.  “Just a few minutes“, I tell myself.  But it will never be enough, and so usually I just keep going.  Actually right now I would have said I was sleeping better than usual.  But I wake up exhausted, and that is simply the way of fibro.  Apparently we don’t get any deep sleep, and so I find myself like this often.

My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now.  Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.

I sat in therapy today struggling to comprehend what my therapist was saying.  I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other.  And when I tried to explain it?  I didn’t get the message across.  He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time).  Seemingly I should have had a sign around my neck.  While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.

I’m getting the clear impression that if I look fine to others, then apparently I must be fine.  And isn’t that the difficulty of an invisible illness?  Fibro is one of many illnesses where a sign around the neck is important.  Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).

Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain”  “It doesn’t matter.”  There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself.  The thing is that quietly my hope is fading.  And I hate that because I just don’t want to go back there.

So what is hope in respect of an illness like fibro?  I don’t know.  This is a chronic illness.  There is no cure.  At the moment I can’t get medication to treat either the symptoms or the pain.  Oh, and I can’t afford alternative treatments right now either.  So how does hope fit into this scenario?

I have this sense that somewhere inside myself I need to come to a point of accepting the illness.  But how?  I don’t want this pain and fatigue for the rest of my life.  So how do I accept it without resigning myself?

My symptoms have got significantly worse in the year since I was diagnosed.  How do I have hope for my future with that in mind?  Right now my symptoms are dictating how I live my life.  I want to choose how I live my life, not have an illness do it for me.  How?  How do I be the one in control?

If you’ve had any flash of inspiration I’d love to hear it.  But don’t just tell me it will look better tomorrow, because I doubt that.  Tomorrow might be different levels of pain and fatigue but they will still be here.  That’s just the way it works.

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.” 

―    Elizabeth Wurtzel

18 thoughts on “Fatigued Hope

  1. John Richardson

    Vince Lombardi, a hall of fame American football coach from the 50’s & 60’s said, “fatigue makes cowards of us all.” Of course, his statement was in the context of a football game, nevertheless I think it’s a true statement in other situations as well. When we’re that tired and the fight in us is gone then we’re ready to surrender. Actually, you sound like you have a bit of fight left in you and I hope that’s true. I’ve never experienced anything like you’re going through. The closest thing I can remember was during finals one year while I was in college. I had been up, almost coninituios for 2 to 3 days studying. I finally fell asleep on a couch and remember waking up knowing that I had some place I had to be, and I couldn’t move a muscle. I tried to get up or at least move a little for several minutes but never managed a single twitch. That was a strange feeing and I would hate to have to life with that on a regular basis. Your case is of course much worse. All I had to do was get enough sleep. You’re being worn down not only by the fatigue but also by the pain. I expect there is some fear as well. Fear of the unknow and how this is going to turn out. Many American indians have little fear of pain. Because of this there have been many cases where they arrive at emergency rooms and get stitches for relatively sizeable wounds without recieveing any medicaion or drugs at all. It seems that fear, many times is a major component of pain. I’m not saying that without fear there is no pain, but the more fear there is the more the pain in maginified. I think you have plenty of reason to hope. First you have the advantage of the human body, that over time has an amazing capacity to heal itself. Secondly, these things tend to go in cycles so although you might be having a bad day today you can reasonably expect a better day tomorrow. Third, medical art and science, over time will probably devise better treatments for your condition and you will get better. This will happen Cate. Finally, for immediate improvement and complete relief of pain you probably need a miracle and for this I would suggest you talk to God. To do this, find God in the stillness. This doesn’t mean just beinging in a quite room with no talking. This means quieting your mind and thinking absolutely nothing and listen for what God has to say. Please try this Cate and let me know how it goes. Otherwise, relax play some music and don’t give in to either to frustration or fear. This will work out. God Bless!

  2. I know exactly how you are feeling Cate and peoples words do feel empty and hollow when they say tomorrow will be better without knowing what you are going through. There’s a lot in this post and I hope the venting worked a little. One thing did spring to my mind was about your eyes. I also experienced the twitching eyelids in my left eye and awful migraines would accompany it. I went for an eyetest and found out that the muscles around my eye were getting tired very quickly and would twitch causing blurring vision and the migraines. I know wear glasses with a very, very, very low prescription on my left eye and clear glass for my right. This has reduced the twitching to nothing and while I still get migraines now and again they are not caused by my eye symptoms.

    1. Thanks for that. I had my eyes tested a few months ago and spent a small fortune on new glasses. On that basis I’m hoping I don’t need them changed again, but thanks. If it keeps up I’ll get them checked again. There’s always something, isn’t there? :\

      1. absolutely, i presume it’s an old Irish saying but ‘it’s always an arse or an elbow!’, somewhere through my fibro fog something is telling me I messaged you about glasses before but who knows?! Hope today is treating you well 🙂

  3. Sid Dunnebacke

    I’ve no flash of inspiration, but I’m certain of this: hope is sometimes all there is. The alternatives to hope are truly frightening, and even in the darkest moments I think we all – me included, as well as you – do in fact have hope. It’s in there, Cate, even if it’s difficult to locate at the moment. And you’ll find it.

  4. Hi Cate,
    Please don’t hate me for saying this… I’m not sure if you have a spiritual connection. Do you? That sounds to pat, doesn’t it? I am a Christian. I’m a converted atheist actually. It took A LOT of physical [ulcerative colitis – a chronic condition also] and emotional pain [bipolar and suicidal at one time] to get me to that point.
    love to you my buddy,

    1. Hi Robin, I don’t hate you for saying that (and wouldn’t). Am I right in saying that for you your faith gave you hope? If so, I am happy for you. As for me I do have a Christian faith but now days I don’t attend church. I’m not so keen on organised religion. That said, you have a good point and I suspect I need to do some thinking on that one. So thank you. 🙂

  5. I don’t have fibromyalgia, but I once defended (to her church) a woman who did, by researching and “translating” to those who wanted to paint her hypochondriac. I know some, not a lot. My pain takes the emotional form of depression, anxiety and physical pain from rotator cuff damage and arthritis. Links to trauma also, as often with fibro. The “mental” and the “physical” have links to inflammation, which has to do with stress of all kinds.Inflammation is linked to a WIDE range of problems. I have found that eliminating (I mean purist) food sensitivities (for me, a long list – from blood test) has helped a lot – as long as I do it! Maintaining glycemic control with lots of raw nut snacks, frequent meals mostly low to medium glycemic index vegies and lean protein help a lot. Avoiding sugar, caffeine (bad stuff guaranteed). Gluten, dairy not guaranteed, but likely, contributors. Gentle bedtime routines (such as bath and book) and regularity without media (shutoff 8 pm) – books, music, silence after. Avoiding multi-tasking and similar stressful situations with simplification (where possible). Adrenal testing (saliva) and subsequent adrenal support (DHEA, nutrition, all stressors). I hear references to the “spiritual”, too – peace, forgiveness, faith – are of great value, and some people’s prayer (and intention) has proven benefits. I know with the fatigue and pain and brain fog this is way too much, so I apologize. But hope that if there is something new to you here it will help. And I know that there are no quick fixes, but addressing as many inflammatory stressors as possible, wholistically, may help. Blessings!! Diane

    1. Thanks so much for sharing your knowledge with me Diane. I appreciate it as much as the manner in which you shared it. The thing that really caught my eye was the avoidance of multi-tasking. I used to be an excellent multi-tasker. I could juggle a million things at once and it was what I as paid to do in my job. That was 20 years ago. I’m not sure whether it is the affects of fibro or the affects of too much ECT. I have heard theories on both. Regardless of the why, I simply can’t multi-task anymore. My brain just won’t go there and I find it extremely frustrating. Even to write with music playing is beyond me. So for whatever the reason, I won’t be multi-tasking. Now I just have to find some peace about it. 😉

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