How do you sleep with fibromyalgia?
Researchers defines sleep as: The natural periodic suspension of conscience, during which the power of the body is restored, sleep as: a time you lay in bed uncomfortably, completely exhausted but unable to rest and restore Sleep is defined as: sleep
The funny (fine, cruel and ironic) thing is Fibromyalgia. You’re always tired of it. Totally, incredibly tired. Mental, emotional and physical. Somebody with fibromyalgia would assume that you sleep constantly, but you know what, right?
For someone with fibro, sleep is difficult, frustrating, and most often non-existent. For more than an hour, I personally don’t sleep at a time, and if I have a total of 4 hours a day, that’s a good night. Usually, sleep is just a few hours from time to time.
You need sleep, you want it as a fibro-sick person. But you can’t find a convenient position with so much pain. You try various mattresses, pillows, couch, floor… You try to read, watch TV, and totally obscure silence. You’re trying melatonin, relaxing muscles, sleeping aids. Bombs and lotions of lavender bath. Marijuana. Marijuana. Different CBD and versions. You try everything. You try everything.
And what, suppose? You can’t sleep anyway.
The physical pain that affects sleep is not the only thing. Depression and anxiety occur with fibro. (Fibro again is a cruel thing.) When you lay there, you begin to become so overwhelmed with how awful it is, and you pray for anything you believe in for only a little sleep.
Then you do what everybody says you shouldn’t do. You check the time. You check the time. “All right, in XX hours my alarm goes off.” Then fear comes in. How will I do it by working? Do I have enough concealer to hide under my eyes the giant (permanent) bags? Today, I hope I’m not an all-to-all giant. Just let me falsify it, please, until I do.
- Denial–You’re tired of sleeping. There’s really no way you can have a restless night…. Okay?
- Anger–I believe this is quite self-explainable. This is so unfair and frustrating. Life has dumped you on this awful sickness, and won’t even give you a bit of sleep and a bone?
- Bargaining–all right. Give me two hours and I’m going to be taking a bad day of pain. In fact, I’m going to choose pain only to be able to sleep a little. Food Good.
- Depression–this has already been covered by us. But, yes. But, yes. It’s sweating.
- Acceptance–well, that’s it. Sleep is yet another night. Now that’s my life.
There’s no way through these stages and many will fight to get through them with the “how.” I certainly don’t have the right replies, and I’m not sure I have passed successfully any phase if you really want to know the truth. How does one navigate these stages, then, if we have crossed them, how do we know?
I’ll share a very personal article to everyone because, as a friend of mine, I said,’ I share in transparency. I share some very individual things with each other. The hard stuff is too often hidden. Maybe that’s a way for me to go through some stages of grief.
As I have, when people experience grief or stages of grief, you may find that you can walk through every stage and experience some common senses. However, what does each stage really mean?
Acceptance is the final stage of grief, but it may be one step or the end of each stage. And if you can take part in each stage, perhaps you will “reach it” successfully. Maybe this is the end of your sorrow, and you’re continuing and your life is progressing and learning to live what will become your “new” life.
But this complaint process can never end for many of us. It can be like a song repeatedly, we tap into every stage, experience the feeling of each stage and go to the next stage, but with no real resolution. Alternatively, you move on and return to an earlier phase or start again in stage one. There is no timeline or arbitrary time spent climbing or moving from left to right like a book, to a new level or even if you look at these steps, you don’t have a timeline to proceed.
Let’s start at the first stage and work through it. I don’t say you will pass through all these stages successfully, but I’ll share my journey through all these stages as I have experienced them, and as you will see, I may not have passed every stage successfully, I just “live” each stage.
So, first stage; SHOCK!!!! Well, I believe I can safely say that this is a phase of grief that we have not really been shocked by. Many, if not all of us, knew what our doctors/specialists would say on the day we got the diagnosis, which is probably an easy stage of sorrow to be undertaken as many of us are going to skip right through. We don’t know what news we’re going to hear.
But we will fight the diagnosis because those with this disease know that there are limited options for treatment. In fact, like many of you, we suspected or knew what was going on, we couldn’t find a doctor who took our concerns seriously enough to investigate them. I know that we were not at all shocked at this diagnosis. You have had some success with the available treatments, good pain and symptom management in some of those facing Fibro or chronic pain.
So either you jump to Stage2, or you go on to Stage 2, or you don’t have to experience the remainder of your grief. We can all do this in a perfect world. But this is not a perfect world as we all know. We are therefore now trying to proceed to Stage Two.
And the second phase is, negation. Now this is a stage we’ve all passed but we can fight with it or can’t. Like with the “shock” stage, denial is also a very popular feeling. While we were deeply aware of what was happening, we try to negate what is and hope that there’s a more “rational” explanation. This is probably because we all know that fibromyalgia is a stigma.
Perhaps this is a diagnosis of “catch all” given by doctors who can find no more causes. Or it’s all in the lead as many of us have heard, or if you’re trying to get some weight and exercise, you’d feel better. And perhaps some of us are going quite easily through the denial stage, finding we know what is coming, well, it is a foregone conclusion that we are dealing with and we have gone on to “acceptance,” because we knew that this diagnosis was coming, why deny what we knew. No shock, no denial, but perhaps we have an overwhelming sense of endurance!
Finally, somebody tells us what we suspected. Whether weeks, months or years have passed, anyone has “HEARD” what we say at last. It is a rather satisfying feeling to have a feeling of finality, to finally hear what we say and acknowledge what we feel. However, this is some sort of subjective phase of grief.
Many people are willing to miss the denial phase because it is an unnecessary phase. It was a diagnosis which has long been underway. Why would we deny a diagnosis we knew, we knew our lives were being destructed? Well, maybe the denial is because we want to reject the fact that our body has turned on us this way, whatever we knew. We want to deny that the life that we once enjoyed is not the same now? We would like to deny that this beast has come into our lives, causing the path of life to change, changing from what we “think” our way to the future. We are faced with a refusal of life now.
Stage 3 is anger. This is a stage that I know, as most of us certainly do. It was a very hard phase of “acceptance,” for most of us, if not all of us, in the complaints process. Anger is a very real part of the grieving process if someone who has Fibro knows it. Because of our condition, we are angry at what our lives have become.
We’re angry that there are limited options for those who were unable to find any kind of relief from any treatment scheme. We were trying “this” for a time, if that didn’t work, try “that,” and so on. We’re upset that there aren’t limited treatments.
Anger seizes us, why did this happen to us, why should we live in pain, Why do all we do with pain in life? “Why,” particularly when your life is family-orientated, is most difficult to address. You have to be with them, you want to spend time with them, but why are you going to be like that now, to choose between your family or your body, and miss so many plans?
If you can still work, you are angry that you have to deal with pain and tiredness while you try to keep your physical ability to do a good job, or because you are struggling in pain mentally and physically each and every day. You push yourself to the limits, therefore. You get so upset that your life is not as planned.
There’s so much that you’re angry about because of this condition, all of them are so difficult to note and we’re all angry at various things. I’m going to be the first to admit that I probably won’t get completely through this stage. It ALWAYS will be something that will make me angry with this condition. If it means that I never pass all the stages of sorrow successfully, I’m willing to accept this because of the fact that I’m stolen from who I am, and how I live my life, I cannot give up my wrath. I’ve got to live the way I do, I’m angry.
The next step is to negotiate. This is not a stage of complaint which, I believe, is completely relevant to chronic pain. If negotiation means a lot of’ what ifs,’ I don’t think about it. There is no cause for fibromyalgia or chronic pain, so hours can be spent thinking, “If I did, maybe I wouldn’t be here” or “If I didn’t, maybe I wouldn’t suffer.”
But for me personally, it’s like any other chronic disease, nobody can predict that we’d end up with it, it’s just happened. As I often say, that’s what it is, and even though it doesn’t happen, at least in my less terrible days, I have to take it every day and deal with things as they come.
Depression is the fifth phase. This is a stage, as many of us can attest, which I do not expect to complete ever. Medicines can help with symptoms of depression, but not a magic pill that removes all of those sensations. I won’t go into all the medical nuances of depression because there are many reasons and effects and it’s also a symptom of so many things, depression is a very complicated thing.
However, depression could also be a sign of chronic pain or fibromyalgia as we find it hard to look at how our lives have changed and are going to change as a result of suffering and fatigue and other signs that hinder our pleasure in life. Depression can also be a sign of depression. What we’ve lost or will lose depresses us.
We find ourselves in depression because we have to miss this family gathering for the “hundredth” time, this family vacation, our evening with friends or something simple like going to a film. Nothing can substitute for our feelings, because we must miss life again. As our family goes away without us having fun, we’re going to shed countless tears while we don’t get out of bed or out of a sofa. Depression is between mild and severe.
Some are looking for therapy and others are going to rely on medications. Don’t be afraid or ashamed that you will seek help with this. I did both treatments and I continue to treat my depression with medications. Some days are certainly better than others, and I will admit again that I still struggle with it.
I struggle on those days when my pain and fatigue are high. In that day, I struggle to find happiness and find the silver lining. I fight to smile and fight to hide my pain and discomfort. I fight to smile. In the day I only want to “do” that day or that I can’t do those days, my family is usually good at picking up. I can plaster on the smile other days and say, “I’m all right.” Other days.
My best recommendation is, don’t always do it. Don’t put the fake smile on and try to be all right through the day. It’s all right to give in as you feel, as your body reacts. It’s all right to keep you in bed and settle the world. However, it is very important not to allow your life to become so. Care for yourself includes the mental health care of yourself.
So, can anybody who has a chronic condition ever pass the depression stage? I’ll admit that if depression didn’t touch a section of your ongoing life, I would be very surprised. However, please, seek assistance if it gets too bad!
Phase 6 is “testing.” This phase is usually not linked with stages of grief, so it’s a stage where I don’t know how much I have to talk about. The only way I can try to connect it myself and my limits would be to “test.” Probably for fibro patients, this is not uncommon.
ALWAYS are going to get things done. Laundry is not going to pull itself up; the house isn’t going to clean itself; the dishes won’t make themselves and so forth. But to get to know our limits, we need to test ourselves. Learn how far we can move towards minimizing our next day’s pain.
Try to ask for help when we have to stop and rest and learn most of the things we have to do to take care of ourselves. Easy to say, hard to listen to! As often as I should I admit, I don’t ask for help. I can do stuff slowly but I still do it without requesting help as I can’t do it myself, maybe asking for help. I think we can all relate to this at some point on this journey.
Finally, acceptability exists. I’m probably never going to be able to complete this at another stage. I was taught a concept called radical acceptance when I was in therapy. You know your future, and you must find a way to accept it and live accordingly, the easiest way to explain this concept is.
This is probably not the best way to explain this concept, but it will be accepted in the final stage of grief. I’m pretty sure that there’ll never be a time in my life when I can accept fully that my life is that. I live every day, I do whatever I can, I stop, and I’ll ask for help when I need it, though unwillingly.
But these actions don’t mean I’ve accepted in any way that my life is now. Yeah, I “know” that this is my life, and I try to do the best I can every day. However, I’m not sure I can ever accept this, accept my restrictions, accept that my life revolves around suffering, accept that I’m not who I have been for a few years.
I can say with complete certainty that I can’t accept that my life will be that condition. I’m going to do my best not to let this define me and I realize that acceptance doesn’t mean it goes away. The fear of acceptance, I believe, is the ultimate purpose. I am sure it won’t be cured, no matter what type of treatment I try, I won’t be relieved, I won’t be cured.
But if I don’t accept this condition, is there hope that perhaps I will find a better way of life, a way of alleviating my suffering? I’m not an expert at all, I don’t know. Will I continue with treatments for research? Will I keep trying to change my lifestyle like I already did? Of course, nobody wants to accept this life, but maybe I accept it to some extent, because I know that it won’t change. I know I will continue to suffer unless a miracle treatment is found.
Maybe I’ve passed this stage and didn’t realize it. However, I don’t want to accept this again, in order to be fully transparent, and always hate what my life has made. However, I’m not going to leave. I will not stop trying every day to find even a sliver of happiness, remember my luck, love my family and the gifts I have. I will not stop trying to find I’m not going to stop trying to “start freshly” with lifestyle choices, to do what I can to try to live as well as I can.
So, I’m not sure if anyone can go beyond who they once were, complain of what their life was, complain of what they missed. I know that my complaint about what my life is will never be solved. But perhaps we don’t have to, as long as that sorrow doesn’t overcome who we are and keep us from living as much as possible.
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