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Stuck In My Own Prison

Stuck In My Own Prison

My husband and I like to watch a lot of prison shows on television. We are always so interested to see what someone in prison/jail goes through. These men and women on these shows have no life outside of the prison walls. The prisons are dirty and disgusting. They live in cells with complete strangers, with little to look forward to. They keep them isolated and feed them garbage. These criminals are lost and just need some tough love and direction. They need to see that with the right help that they can make it in the real world. Prison life is most certainly a rough life to have to live. It made me realize how anyone suffering from any disease or illness is stuck in a prison of their own. We can all be inmates within our own bodies.

Fatigue holds me prisoner

We all have our own prison. MS happens to be mine. There are many other small MS symptoms I face, but fatigue is what holds me prisoner the most. It is what keeps me locked up and at times, unable to see freedom on the other side. It is relatable to sitting in a prison cell. I can’t get out no matter how hard I try, because my body holds the key to my release. I don’t know whether I will be locked up for days, weeks or months. All I can do is sit and hope that the heaviness and the exhaustion ease up soon.

I miss my freedom

As with any MS symptom, I sit and wait. The symptoms keep me isolated and feeling alone. While I can vent to my family, I know they can never truly understand. They don’t feel how difficult it is for me. They can’t see how sick it makes me feel. It is draining both physically and emotionally because all I want is for it to all stop. It keeps me in my room, longing to be alone and rest, but pained because I know how much it’s causing me to miss beyond the walls of my bedroom. I miss my family and my friends. I miss getting to get out and do whatever I want whenever I want. I miss my freedom. I lay down to sleep to fight the tiredness, but my mind won’t let me be.

How long until I’m locked up again

Like the inside of a prison, no matter how tired you are, it’s difficult to sleep with all of the noise. The insomnia is deafening and only makes this sentence feel even longer than it already is. I try to see the positive, but when you’re confined to your bed it’s difficult to keep looking up. Each day I think I may see freedom on the other side, but soon realize, my time isn’t up yet. But, then, finally, I am called for release. I hear my name called and I’m anxious to get out; to be free. As excited as I am though, there is always the hidden fear of wondering when I’ll be locked up again. How long will I be free from my prison walls this time?

What MS symptom holds you prisoner the most?

XOXO,

Calie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Giova
    4 months ago

    Hi Calie

    Over 2 years ago I got my diagnosis of PPMS and since then I have struggled to put into words how I struggle with it. This is a disease that everyone knows but few understand or to be honest want to.

    Your words nailed it for me, thank you. My feelings of isolation and the reluctance to want to socialise when before I couldn’t be stopped.

    Thank you again.
    Giovanni

  • Bkboo
    4 months ago

    Mine is Fatigue and brain fog! But it isn’t stopping me from being outside enjoying summer, which is my favorite season. Also, I mow to make extra money and quite honestly I love being outside moving. BUT, I pay for it dearly. Im going to bed at 6:30 and I am up at 6am….12 hours and still tired. I have to take armodafinil to get on with my day, which ends at 3ish..I am lucky to get out for 5 or 6 hours and then Im locked up inside my “prison”, isolated and just wanting to rest and be alone.

  • Bkboo
    4 months ago

    just wanted to add that my MS Doc said that being in the sun will not cause an exasperation. It will just wipe me out.

  • Calie Wyatt moderator author
    4 months ago

    @bkboo I admire you for getting out in the heat and mowing! The heat wipes me out as well. One of the hardest parts for me about fatigue is feeling like I haven’t slept at all when I know I have. MS fatigue is no joke! Thank you for reading and commenting!

    Best wishes, Calie

  • Angelbuddhist57
    4 months ago

    Light and blessings to you…your sharing is a positive step in your journey by reaching out it allows other to understand this awful disease

  • Calie Wyatt moderator author
    4 months ago

    @angelbuddhist57 thank you for your kind words!

    Best wishes, Calie

  • dhortho1
    4 months ago

    Well……it’s been 18 months since I’ve heard from her. I don’t pretend to know what she is going through and have never implied that I do. We were having the best of “conversations” catching up after years of no contact, didn’t hear from her for a month and when I finally did she said she goes “dark” often, says her friends know this and that she perhaps uses this as a “test” to see if they will still be her friends without “constant attention”. Good grief! I have only made a couple other attempts such as “Happy Mothers Day” and a little music video I put together just to let her know I am still here and support her. It’s all been met with a roaring silence — it’s hard to not take it personally. I have never experienced anything quite like this with the head spinning abrupt change in her mood/demeanor and now regret I reached out to her in the first place. My take is — she is so mentally messed up she can’t even cope with a benign friendship. David

  • Calie Wyatt moderator author
    4 months ago

    @dhortho1 I am so sorry to hear that about your friend. It seems that you truly care. I applaud you for continuing to pursue the relationship. Hoping things improve soon and she reaches out!

    Best wishes, Calie

  • lichell
    4 months ago

    Hello Calie,

    You expressed MS as a prison which I have expressed to friends and family for quite a few years. I also call it my ‘fingerprint’ disease. I’m basically seasonal. A lot depends on temperatures and other weather related issues like humidity, rain, snow…sigh.
    I get exhausted just thinking about it. Gone are the days of being able to just hang out and enjoy. These days I can only test the waters on how much I can tolerate without giving myself exacerbation. So I stay calm with the things I love that I can still maintain. Playing with my dog, reading, listening music or watching something that interests me. On occasion I do have some friends that either scoop me up and take me out or I invite them over.
    Just thought I’d share this with you.

  • Calie Wyatt moderator author
    4 months ago

    @lichell I hear you and completely understand. I’m so glad you still have things you enjoy and friends to share them with! I’m thankful you shared all of this with me, wishing you lots of mild weather ahead so you can enjoy all of the things that you love!

    Best wishes, Calie

  • AnywhereOutOfThisWorld
    4 months ago

    I hear you girl.

  • hot MesSter
    4 months ago

    My sister (she has MS also) just sent me this article to read. I was seriously just telling her that I can’t do this anymore. It used to be that only cold weather caused my fatigue and all the other things that go with it. Now it appears that humidity triggers it as well. I no longer drive due to my fatigue, amongst other MS symptoms. I work from home thankfully, but still do work full time. Yet I still find myself having to punch out periodically for a nap because I simply can’t function anymore. I swear, I’ve been on every drug to help with the fatigue, but nothing helps. Heck, I can pop an adderall and turn around and go right to sleep. Something has got to give!

  • Calie Wyatt moderator author
    4 months ago

    @hot-messter you’re not alone! The heat and humidity are a struggle for me as well. I too have tried every anti-fatigue drug and have not found one that helps or is worth the side effects. MS fatigue is so difficult. Please know this community is here for you, and we understand.

    Best wishes, Calie

  • potter
    4 months ago

    Hot summer heat and humidity, even running errands in and out of air conditioned buildings does me in. I get home change into a light robe and collapse under the ceiling fan. I stare out the back door wishing I could go out and do some gardening instead I am watching the weeds grow. I am extremely lucky my pottery studio is air conditioned but it still doesn’t compare to the great outdoors. Potter

  • Calie Wyatt moderator author
    4 months ago

    @potter you’re so right, the struggles from the heat and isolation from not being able to be outdoors are extremely frustrating! Thanks for weighing in!

    Best wishes, Calie

  • Nancy W
    4 months ago

    The fatigue from the heat keeps me prisoner. Today, I felt good this morning, went for a swim at the local outdoor pool, was feeling well enough to come home and weed, make lunch and empty the dishwasher. Then, Bam, it hit me, the fatigue is so overwhelming. I tried to rest for awhile and then go to the grocery store. I stopped at my Drs office to pick something up along the way and realized as I walked back to my car in the heat, that I was not going to be able handle the grocery trip. So, I stopped at the convenience store and got milk, bread and lemonade. I guess I know how to adapt. We won’t starve.

  • Calie Wyatt moderator author
    4 months ago

    @nancyw421 the fatigue from the heat hits me suddenly as well. It punches us in the gut without warning! You’re not alone. Thank you for sharing!

    Best wishes, Calie

  • ladyjeff00
    4 months ago

    Thank you for this. A friend I hadn’t seen in fifteen years asked me what MS took that I miss the most? I realized no one has asked that in 20 years. My answer was spontaneity. The amount of planning that goes into every activity Nothing is a last minute decision. I guess it could be worse. MScuses have saved me from going to things I really didn’t want to attend. There is always an upside

  • Shelby Comito moderator
    4 months ago

    Such a perfect response, @ladyjeff00, and one that I don’t think many people realize but everyone can relate to. Spontaneity is so easily taken for granted, and I definitely can understand how much it’s missed. I’m glad to hear you always find an upside despite the challenges 🙂 Thanks so much for sharing! – Shelby, MultipleSclerosis.net Team Member

  • Yoshitail9
    4 months ago

    Value
    In prison jargon when you return to your old ways it’s called the recidivism rate. I SUPPOSE in MS talk it’s the relapse rate. I hope that after your next “Prison Break” you will remain a Fugitive for a veey long time.

  • Shelby Comito moderator
    4 months ago

    Hahah I love that @yoshitail9! Wishing you many joyous days as a fugitive as well! – Shelby, MultipleSclerosis.net Team Member

  • Lamm
    4 months ago

    Hi everyone , just saw your post Paul & that is exactly what i was thinking ! Funny, today for me it is my eyes doing things not fatigue . So was actually able to get up & get ready for my appointment i had. So i guess i should be thankful for that. Hope you all have a good day.

  • Calie Wyatt moderator author
    4 months ago

    @lamm hoping your appointment went well and that today was another good day! Thanks for sharing!

    Best wishes, Calie

  • SLewis09
    4 months ago

    I understand completely! Fatigue is a awful. No one really gets HOW tired you are, but they love to tell you how tired you look;). (20 years of this.)

  • Calie Wyatt moderator author
    4 months ago

    @slewis09 it’s funny how people like to tell us how tired we look, isn’t it? I wonder how they would feel if they knew this level of fatigue!

    Best wishes, Calie

  • joyce114
    4 months ago

    My fatigue has been holding me prisoner for the past year.

  • Calie Wyatt moderator author
    4 months ago

    @joyce114 I hear you, fatigue has been my biggest struggle for years. It never seems to let up. Thank you for commenting!

    Best wishes, Calie

  • rnhviolin
    4 months ago

    Oh Calie,
    I so hear you, and feel your prison for it so resembles mine. Thank you for putting your thought into words, it offered me much comfort, and some hope, roz

  • Calie Wyatt moderator author
    4 months ago

    @rnhviolin Roz,

    Thank you for your kind words! Although I hate you have to experience fatigue as well, I’m so glad this article could offer you comfort. ❤️

    Best wishes, Calie

  • Karencsk
    4 months ago

    Thank you for expressing how the good old fatique factor works. This hot humid summer has me locked up. Over the 40 years since I was diagnosed, the fatique and temperature sensitivity has greatly increased. And I still try to go out and always end up paying for it. I barely made it back inside yesterday. My helpful husband had to lift my feet for me. But I never give up hope. I know that someday I will be walking, running and dancing again- if not in this life it will in the next when I am home with my Lord and Savior. God bless

  • Calie Wyatt moderator author
    4 months ago

    @karencsk I’m so glad you haven’t given up hope! I haven’t either. My hope and faith keep me going most days!

    Blessings to you, Calie

  • RAIDERNATION
    4 months ago

    Hello Calie

    My name is Paul and you just told my story.

  • Calie Wyatt moderator author
    4 months ago

    @raidernation Hi Paul! I hate you can relate but always find comfort in knowing others understand! Thank you for sharing!!

    Best wishes, Calie

  • MHerron
    4 months ago

    Stress is a killer, more than heat I believe. It’s silent and unseen. I withstood it for 30 years through 2 demanding husbands. A stress-free life is an absolute necessity as much as a cooling-vest. Stress brings on all of the ugly symptoms you have to deal with. At one point, I was using steroids monthly and having 5 attacks a year. I had to hold on to walls or anything (walking sticks) to walk without falling over because of my horrible balance. My brain fog and memory issues were a huge deficit as well. It’s so frustrating having an invisible disease. Now, I’m having my port removed because I’m not having attacks anymore. I have my balance back. I can do yoga (a wonderful core and balance strengthener) I pray things get better for you and any of my suggestions help you as well.

  • Calie Wyatt moderator author
    4 months ago

    @mherron I agree, stress is such a huge factor that impacts our MS! I’m so glad to hear you’re doing better after all of those difficult years. I pray that continues!

    Best wishes, Calie

  • Suze
    4 months ago

    @mherron, I’m so happy for you that the Lord has healed you from your ailments. I’ve been a Christian for over ten years, and I also turn to Him for everything. His grace gets me through each day, but I struggle with debilitating nerve pain, weakness and balance issues every day. My goal and dream is to be able to ride my horses again, which I refuse to give up! So I’ll just keep praying and believing that I, too, shall be healed! God bless you.

  • MHerron
    4 months ago

    By the way, I’ve had MS for 20 years this December.

  • MHerron
    4 months ago

    Callie, I completely understand the wet blanket that just comes over you and keeps you down. Then, your body starts hurting just from laying. That sucks too. But, there is joyness in the pain and frustration. I have turned to God. I tell him about everything bothering me. He then had the graciousness to take it all away, literally. I am healed from all of my ailments. Stress was my killer issue. I have changed my life (literally- divorce, moved, name change). Those gave me my life back, as I only have me to care for (oh, and my 2 dogs at my side 24/7) because I don’t have a demanding husband who can’t understand. Have you tried scrapbooking or even painting in bed? Try reading the New Testament in the Bible. Everything Jesus and his disciples went through just to get His message of salvation out makes you know that your problems pale in comparison. It gets your mind out of your prison and on God! Keep looking up to Jesus and you won’t have time to look around. Try volunteering through your computer to write to those in need. Write to the actual prisoners behind bars. Open Doors is another one who need help getting the Word out and support for Christians in persecuting countries. Just some things I have done to help me heal and get my mind off of myself. God bless you!

  • Mare
    4 months ago

    Dear Calie: I have had MS since I was 36 years old. My primary symptoms are Fatigue and Pain. Sometimes I am not sure which is worse. Sometimes the Fatigue & Pain go hand-in-hand.

    I just keep fighting through both. I have to as I have to continue to work full-time for another 10 years until my Mortgage is paid off. I have also been advised by an attorney’s office that to go out on disability at 57 is almost IMPOSSIBLE with relapsing/remitting MS.

    There is no point in complaining (talking to myself here) because even if you try to explain how bad you feel and why, it falls on deaf ears even with family. I have one sister because my MS is not as not as bad as her friend’s was (she was in a wheel chair) that there is nothing wrong with me!

    I agree with you wholeheartedly that we are in a prison of some sorts but we can hope that before we expire that they will come up with a new drug or therapy that will wipe out this disease.

    When I am in really bad shape, I try to remember that attitude is everything and the little boy, Mattie Stepanek, who died at age 13 of a rare autoimmune disease who was wise beyond his years, brave, and wanted nothing more than World Peace. His poems inspire me and make me forget for a time that my life could be 100% worse.

    Hoping it lets up for a while for you and you release your prison bars! Peace and Love, Mare

  • Calie Wyatt moderator author
    4 months ago

    @boley I couldn’t agree more, attitude makes such a difference! Hoping your pain and fatigue let up for you as well. Thank you so much for commenting! ❤️

    Best wishes, Calie

  • Amiracali
    4 months ago

    Fatigue is a big one for me as well as the ever infamous cog-fog.

    I tend to fight the fatigue and push through, as I don’t have another choice.

    I did just graduate college, and just got remarried… so not too bad considering I will be 48 next month.

    Positivity, tenacity, and sheer stubbornness gets me through most days coupled with caffeine or Red Bull

  • Calie Wyatt moderator author
    4 months ago

    @amiracali congratulations on your graduation and new marriage! I agree, positivity, tenacity and stubbornness get me through more than I could ever say!

    Best wishes, Calie

  • Legsonstrike
    4 months ago

    Fatigue and dizziness and leg wellness in both legs and cognitive issues, I stay mad all of the time because I can’t do the things I want to do!!

  • Calie Wyatt moderator author
    4 months ago

    @legsonstrike that is so frustrating! I hear you and understand!

    Best wishes, Calie

  • Lily
    4 months ago

    During the summer, I feel like I am under house arrest.
    When someone comments how well I’m doing, of course I realize they are being supportive, I think of the affirmation:
    Someone said, “I don’t know how you do it.”
    I said “I wasn’t given a choice.”

  • Calie Wyatt moderator author
    4 months ago

    @lily I understand how you’re feeling completely. You’re so right, we do it because we weren’t given a choice. Thank you for reading and commenting!

    Best wishes, Calie

  • potter
    4 months ago

    Heat, leg and feet problems keep me a prisoner. That is exactly how I feel! I am usually stuck in the house most of the summer and in the winter when the ground is covered with ice and snow. I look forward to spring and fall and try to find something to keep busy during my lock down periods. Potter

  • Calie Wyatt moderator author
    4 months ago

    Hi @potter!! I am also looking forward to spring and fall, it will be a much needed relief after a long hot summer! Hang in there, you’re not alone!

    Best wishes, Calie

  • m.Todd
    4 months ago

    Calie, this was a very nice “reach-out” to us other MS friends.
    Of course, those criminals made choice(s) to be imprisoned.
    MS prison is not something to which we had any choices. Our only real choice is to do the best we can with our “sentence”.
    At least we are never alone in this club.

  • Calie Wyatt moderator author
    4 months ago

    @mtoddh thank you so much for your comment! You’re so right, unlike them we didn’t choose this. So thankful we have other MS friends to lean on through this “sentence”.

    Best wishes, Calie

  • Azjackie
    4 months ago

    Great sharing. I can totally relate. I think though people with MS are often treated worse than prisoners.

    Prisoners can walk in their cell or exercise. I have great difficulty moving.

    Prisoners get free healthcare. I haven’t had health insurance in over 5 years. My state Medicaid cancelled because I earn $1631/mo SSDI and they capped income at $1200/mo. I haven’t afforded an MRI in 3 years so I really don’t know about my lesions. I just go by knowing I had 2 years no change. Who knows about all else. I’ve abandoned all wellness checks.

    I do take care of my teeth. Funny dentists don’t care if you have insurance or not and often offer free cleanings and exams to new patients. Good thing I live in a growing community with many new dentists.

    I feel I’ve received a life sentence of misery. I feel my future has been violently ripped away. Much like my career, happiness, and faith. Now it’s crazy to imagine greater than by the hour.

    I feel there will never be a cure only treatments. It’s all about money.

    I keep to myself often solitary confinement like many of us I’m sure. I keep up appearances and I must admit I am quite the actress. I know my sentence.

  • Mare
    4 months ago

    Asjackie: Try the Multiple Sclerosis Association of America for an MRI. They pay for me to have one every two years.

    The phone number I have is 1-800-532-7667. You may need to fill out an application and your doctor also has to do part of it, but at least you can get an MRI done. Peace & Love, Mare

  • Calie Wyatt moderator author
    4 months ago

    @jackiemack you make some very valid points! Thank you for sharing so openly and honestly with us. I’m glad you took the time to comment!

    Best wishes, Calie

  • AnywhereOutOfThisWorld
    4 months ago

    I am in that same prison, what cell block are you in?

  • Legsonstrike
    4 months ago

    Lol, my cell block is mostly my recliner and my bed, that’s about it!!

  • Calie Wyatt moderator author
    4 months ago

    @anywhereoutofthisworld I guess I would say I’m in cell block MS! Thank you for joining in the conversation!

    Best wishes, Calie

  • AnywhereOutOfThisWorld
    4 months ago

    Yes my cell block may be next to yours then, hello neighbor ! 🙂

  • PaulieC
    4 months ago

    This article was perfectly written. Exactly how I feel. Thank you for writing this, it sure would be nice if people i know would read this, but nobody cares. Thank you

  • dhortho1
    4 months ago

    I care and I don’t have MS. A friend of mine has MS and as a result I have learned everything I can about MS and it’s myriad symptoms. My reward for trying to be a supportive friend? — she has gone “dark” and ceases to communicate. It’s unfortunate when MS’ers chooses to self-isolate and shut us out. We get hurt, too.

  • Suze
    4 months ago

    @dhortho1, You sound like a wonderful friend! You don’t hear of many people taking the time to research a disease and it’s symptoms so you can support a friend. I don’t know the situation between you and your friend with MS, but please try not to take it personally. It’s pretty common for us to isolate at times, and even though you feel that you know what he/she is going through, you simply cannot unless you yourself have this hideous disease. The MS mind is a very complex thing, and can be affected in many different ways. Perhaps your friend just needs to be alone right now, but doesn’t want to shut you out completely! Give it a little time

  • Calie Wyatt moderator author
    4 months ago

    @pauliec thank you for reading and commenting! I wish people you know would read it as well! Please know we care here and are always here for you!

    Best wishes, Calie

  • Contalita
    5 months ago

    Hello, Calie Wishing you the best & when you have a good day, week or month that it is long-lasting. The symptom that now holds me prisoner( before being diagnosed seven years of extreme fatigue) now it’s eyesight some days I can see very clear but I can’t see things close up, the worst of it is even though I have special eyeglasses my eyes are very sensitive to bright light & sunlight & some days, balance isn’t good at all…and thats it time to get creative and think of what I can do now instead of what I can’t.

  • Calie Wyatt moderator author
    4 months ago

    @contalita thank you so much for your kind words! Eyesight problems are most certainly miserable, I too have very sensitive eyes. You’re in my thoughts. ❤️

    Best wishes, Calie

  • Contalita
    4 months ago

    Thanks, Calie, for using your precious time and providing a kind reply☺.

  • Dimitri
    5 months ago

    Great article.
    My head just keeps on spinning.
    The doctors say I’m doing great because the is no evidence of disease activity on my MRIs.
    But I don’t feel like I’m doing great.
    What killed me in your article is the inability to communicate with the outside world.

  • Calie Wyatt moderator author
    4 months ago

    @dimitri thank you for your comment! It’s hard to hear doctors say how great you’re doing when you don’t feel great, I understand that completely! I know it’s not the same as the outside world, but I hope you know you can always communicate with us here whenever you need to!

    Best wishes, Calie

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