Multiple Sclerosis Diary Part 3: Fatigue, Pain, and Depression {The Troubling Trio} #curems

Be good to yourself....always.

 

When I open my eyes in the morning, I am very grateful to be alive. I truly am. This feeling of gratefulness often fights with two things {three things if I’m honest}:  fatigue, pain, and depression.

The fatigue creeps in as soon as I open my eyes and it pushes out all thoughts of gratefulness. This isn’t the kind of fatigue that is a result of not getting eight hours of sleep. This isn’t even the kind of the fatigue that is the result of staying awake for 24 hours straight. This is a hard to explain deep bone fatigue. This is the kind of fatigue that makes you aware of how much energy is required to breathe. The kind of fatigue that grips your body and mind and says “don’t move.”  This kind of fatigue…only another MS’er can truly understand but that doesn’t mean people without MS can’t understand the jest of it.

When I’m gripped with really bad fatigue, I can sleep 24 hours straight. No bathroom trips. No drinks of water. No food. Just sleep. And you know what? My body obviously needs sleep so I sleep.

Moderate fatigue for me means I sleep 14-16 hours a day. Minimal fatigue? It doesn’t exist for me. It’s 14 hours of sleep or more. I don’t have a choice either. I can try to fight the sleep {if I’m awake}, but I won’t win. Dizziness sets in. Nausea appears. Then my eyelids start getting heavy. My.body.must.have.sleep. If I don’t lie down within 30 minutes of these symptoms appearing, I feel like I’m going to pass out {and I have passed out}. Fun eh?

Multiple Sclerosis walked into my life and brought its friend pain. I’ve been living with pain so long that I wouldn’t know how to act if I weren’t in pain.

Kimberly – Chief blogger

A day without pain would cause me to ask myself, “Am I dead?”

As a person with fibromyalgia and Multiple Sclerosis, I get a double serving of pain. There are shooting pains, throbbing pains, aching pains, burning pains, and tingling pains….just to name a few. The doctors are more than willing to prescribe me pain medications but I refuse to take the ones with addictive tendencies. No, I’m no martyr. I’m not better than the person who takes pain meds, it’s just my choice not to take them.

Addiction runs in my family. I used to work as an addictions counselor. Do you see where this is going? So what do I take when I can’t stand it anymore? Gabapentin. It helps block nerve signals and therefore blocks the feeling of pain. In the past, I’ve attempted to take gabapentin daily but I felt like a zombie. And hey, I’m not a fan of zombies {especially Walking Dead zombies}. I don’t want to live the remainder of my life as a zombie so I only take gabapentin when I can’t stand the pain anymore. Then I fall asleep.

Kimberly – Chief blogger

Depression is not simply feeling blue. Depression is an all-encompassing sadness that includes physical symptoms.

Persons with MS are prone to experiencing depression due to the neurological changes affecting the brain. In one study {where the subject pool consisted of people diagnosed with MS}, clinically significant depressive symptoms were found in 41.8% of the subjects, and 29.1% of the subjects had moderate to severe depression. That’s significant. That means that us MS’ers are likely to get depressed but it doesn’t take a rocket scientist to figure that one out. If a disease takes away your career,  your ability to walk, your ability to socialize, your ability to think properly, and you’re burdened with the costs of medical care, plus you’re in pain and fatigued all the time, depression is a natural response.  If you are depressed, don’t be afraid to seek treatment. Ask for help. Don’t suffer in silence.

I needed help a few times.

Kimberly – Chief blogger

I take prescription medication to deal with clinical depression and I’m not afraid to admit it. It doesn’t make me weak or a freak. It makes me strong for addressing the issue and dealing with it.

Despite the fact that I experience daily fatigue and pain {and fight off the return of depression}, my life is not miserable. I try to balance out the negatives with the positives. I engage in activities that make me happy. I give myself permission to sleep when I need to. I ask for help when I need it. I have finally accepted my limitations and it only took me five years to get here!! My biggest piece of advice, be good to yourself. You will feel beaten up in so many other ways that you don’t need to be your own worst critic. You’re still alive. I’m still alive. I’m grateful for both.

life is how you react to it #curems

 

 

If you have a chronic health issue, what’s your biggest daily struggle?

Comments

  1. Sarah says

    Hi Kimberly.
    I have MS fatigue, too. I take provigil every morning, and it really helps.
    Non-addictive, too.
    The trick is to be aware of the timing, because when it wears off (for me that seems to be around 11 hours later) the fatigue is back.
    It’s not a crash as much as a return to the feeling that moving-my-arm-to-turn-the-page is just too hard. So I don’t want to be driving when that happens. But I’ve been able to go back to school because of it.
    I’m sure everyone and their mother has a ton of unsolicited advice for you, me too. You and your neuro know what’s best for you. I just wanted you know that there’s something that helps me, and maybe it could help you, too?

    • Kimberly--Blog Owner says

      Hi Sarah! Thanks for stopping by. I currently take Provigil. I’ve been taking it for several years. Every time we try to increase my dose, I get the shakes really bad. Even at the dose I’m on, I still feel exhausted all the time.

      I’m so glad it helped you get back to school!! That is crazy awesome!

      I have Primary Progressive MS so that’s part of the problem. Are you relapse remitting?

  2. says

    I love this post and how you express what is happening. “Normal” individuals can not relate to the exhaustion that is bone deep or the chronic pain issues that can lead to mental issues. It took me a long time to admit that, in addition to my other meds, I’m also taking anti-depression and anxiety meds. I can relate to what you’re saying to a certain degree because I deal with fibromyalgia, sjogren’s and multiple myeloma. “Luckily,” my multiple myeloma is just simmering now and I’ve had a pretty good level of energy. It’s exciting and scary ’cause I feel like I’m always waiting for the crash – the flare. The tiredness is out of control, of course, but I’m so happy to be moving around more right now and able to finish more than one thing a day that I can’t complain right now.

    The pain is still there (don’t you just love when they ask you to rate your pain from 1 to 10?), always hanging around, throbbing, shooting … Just like you described! I can’t imagine having MS though. The farthest my mind has went is what if my sjogren’s “turns” to Lupus. Sigh!

    I’m proud of you. Just visiting you a couple of times I know you’re a rockstar!

    • Kimberly--Blog Owner says

      Petula–You just made my day girl!! Thank you for the kind words. It’s ironic that you mention that pain scale because I intended to include it my post but then I realized that my words would not be too kind. A 5, an 8, a 4…heck, they all blend together!!

      Fibro is just lovely isn’t it?? I’m glad to hear that your MM is calming itself down. I’ll pray it stays that way. Kudos to you for openly admitting that you take anti-depressant/anti-anxiety meds. I’m not ashamed and you shouldn’t be either. Let’s get rid of the stigma!! When I was a practicing mental health therapist, I had to educate people all the time on how the drugs are not a crutch—they’re simply supplying what our bodies are missing.

      My daughter has lupus {in remission} and writes on this blog from time to time. You can find her posts under Bree’s corner

      Hang in there my new bloggy buddy <3

      • says

        Thank you so much for this! You expressed something here that I wish i could get across. I too suffer with MS and your description of fatigue and pain were spot on. I also suffer with depression and anxiety..but how can you not? I completely agree. It has been almost three years since my diagnosis and I am still struggling with accepting myself and my limitations. I appreciate your article.

        • Kimberly--Blog Owner says

          Thank you Jennifer. I appreciate you stopping by. It’s been 5 years since my official diagnosis. Dealing with MS hasn’t been easy but I plan to keep on fighting until there’s no more fight left in me ;)

  3. Olivia Rubin says

    Thank you for sharing your story and your struggle. My mom has a form of Muscular Dystrophy called Myasenthia Gravis. Diagnosed a year ago July, life has changed for her and for all of us. It’s an autoimmune, nueromuscular disease that causes weakness. It results from your bodies inability to create a connection with acetylcholine. My mom’s levels of acetcholine were 4x the highest levels because they were free floating and not connecting to neurotransmitters. She has stage 1. And we are all very fortunate for that. She has constant double vision. It is not her eye sight, but the muscles, so it it cannot be helped with glasses. She has lost her independence to drive and look in stores, read, pretty much anything involving vision. :(

    • Kimberly--Blog Owner says

      So sorry to hear about your mom Olivia. I am familiar with Myasthenia Gravis and know several people who struggle with this disease. Have you connected with the MG Foundation of America? http://www.myasthenia.org/ They may be able to recommend some adaptive devices for your mom so she can enjoy reading again. There are other areas they assist with as well.

      Thank you so much for sharing your mom’s story. If sharing my story can help even one person, I am happy. Hugs my friend.

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