The Prison of Chronic Illness

The Prison of Chronic Illness

Attempting to explain what it’s like to live with a disease like Multiple Sclerosis is not always an easy challenge. Finding the right descriptors for an experience that few others will ever have to endure can be tough. I recently wrote about how living with MS is a lot like living with mud everywhere. Today, I want to use another descriptor, one that I’ve heard many others use when describing their life with MS: being in prison.

Now, first of all, I haven’t been in prison (at least not yet anyway) so what I know is really based on what I see on TV and in various documentaries and items I’ve read. The similarities really struck me the other day, because I had decided to write a few people in prison through a prisoner pen pal program. I did this because I felt we had a few things in common, some parts of our daily life that are similar. Before I continue, I do want to mention that I don’t always feel this way and I know I have it much better than if I were in prison. Still, there are some things, that at times, feel similar.

Trapped

Obviously, the biggest reason for this prison analogy is because I spend a lot of time stuck in one place. If I’m having a bad day and my legs don’t want to work, I’m pretty much stuck at home. I’m not really supposed to drive, so that further limits my options, even on days that I’m feeling decent. On the bad days, I’m not only trapped and imprisoned in my house, I’m imprisoned in my own body. There are days when the fatigue, numbness, and weakness are so bad, that even moving around my own house seems next to impossible. When even trying to get to the bathroom becomes a difficult task, feeling like I’m imprisoned very much pops into my mind. A lot of people out there think that being on disability is like a vacation, when in reality, it’s more like being in prison.

Routine

In prison, people are often subjected to an ironclad routine that they have no choice but to follow. They have to wake when they are told, eat when they are told, get ready for bed when they are told. While not for the same reasons, I’ve become reliant on my routine. Taking my medication at the same time everyday, having to get rest at the right times, having things set up in a specific way in my house. Not sticking to my routine usually means my body will punish me with an increase in my symptoms.

Loneliness

As I glanced at some of the ads for the prison pen pal program that I mentioned earlier, one of the common reasons people were seeking pen pals was due to loneliness. If you’ve read some of my previous work, you know that loneliness is something I battle often. Being trapped and not getting out much is certainly part of that, as is spending a lot of time actually alone, but for me, also having a disease that is seldom understood by others, also plays a very big part. MS, like being in prison, can be extremely lonely.

I feel like there are probably other ways living with a chronic illness, particularly if you are on disability, is a lot like being in prison; I don’t want to go on too long though! I again want to reiterate that I know being in prison is likely way worse, but it’s an analogy that pops in my head so often, I felt I needed to write about it. Does life with MS ever feel like life in prison to you? I would love for you all to continue the discussion in the comments.

Thanks for reading!

Devin

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Comments

View Comments (78)
  • DeniseA
    4 months ago

    I used to take Avonex for 8 years,now i will start Mabthera for my PPMS,i go to physio twice a week and i take all my vitamins.I dont care about using my cane,some people look at me as something wrong,My right side is affected,i try to show strong in front of people,i know what is waiting for me.I try not to think of MS ,after Mabthera will start Ocrevus.Please try all of you to be happy every minute as i do,i had hip replacement surgery too.I am lucky being single and no children,else i was on a wheelchair today.I have pain in my legs and my right arm,but i continue over never listen to MS.I cry sometimes but i say enough all will be ok,que sera sera.Having faith , being strong and treatment in mind all make me powerful.

  • DeniseA
    4 months ago

    I have MS since 2000,now i am 53 doing my sports,taking care of my food and i thank God that i can still take care of myself.I drive my car and do my shopping,and i am strong trying to get over MS although using my cane in long distance.I would like to be friendly with MS society,and thank you for your kindness.Never forget that always there is a hope in life even if it is a small one.I dont have nothing to comment.

  • Neice
    4 months ago

    This has been my lifestyle for over 11 yrs (have had MS for 21 yrs) cuz I have been bedridden, house ridden and in constant pain! I just also have many other disabling diseases and have had 40 surgeries and, getting ready to have 2 more!
    I still have never talked to anyone yet that is like me, but I don’t talk to many people anymore either! I feel like a freak…

  • AnywhereOutOfThisWorld
    4 months ago

    I totally get what you’re saying here. No one in my family has Ms. Also none of my friends have Ms either nor do they understand it. It’s like I am a ghost most days cause I feel like the Ms I have is invisible or at least to others it is. It’s a sort of prison indeed. It certainly is a prison in my body, I am in this prison. I can’t unzip and escape it so I am trapped. I certainly have some days that are worse then others, but even still, I know in some way every day will entail some sort of struggle. We trudge on, us Ms warriors. We have no choice, it’s the cell we are assigned to. It’s our life, it is what it is.

    I am I, and I wish I weren’t. – Aldous Huxley (from his epic novel ‘Brave New World’)

  • rolly
    4 months ago

    Thanks, Devin, for sharing this, and I think the analogy makes a lot of sense.
    I feel trapped most of my days, most hours of my day, although for me, at this stage, it’s not so much the feeling of being trapped in one place anymore (I kind of got used to being housebound), but being trapped in my whole body, unable to move most of my limbs as a quadriplegic due to MS.
    Yes, I have to rely on my routine, which extends to every single part of my day.
    And the loneliness and isolation, which sometimes feels like being locked up in jail.
    Like you, I don’t know what life in prison is really like, but life with MS certainly does feel like a prison!

  • Kym
    4 months ago

    I feel most like a prisoner in the summertime. The heat/humidity keep me inside more. I have my “excersize ” time but it’s very early in the day.

  • Peri
    4 months ago

    As usual, Devin, your metaphor of prison resonates with me. After 20 years, this MSter is a total snowflake disease. No two are alike, similar enough to relate to. Beside you, Marc “kamikaze” wheelchair dude was as articulate, biting, brilliant and pensive. I may take you up on the penpal idea! Genius. The best thing that I have done to cope with MS is getting a service dog. Caring for him makes me get out of bed, walk him, have strangers smile @ a middle aged lady in a scooter and just feel better when I’m down and out. Thanks as always for your wisdom.

  • Carol
    4 months ago

    Absolutely. It does feel like being in prison. We have to stick to routines, day after day. Not able to go outside and enjoy the fresh air. I would like to be able to go shopping or meet up with friends. But the friends have drifted away, they don’t want to be with a sick or disabled person. And I can’t go shopping, can’t make it outside so all my shopping has to be done online. I’m stuck here every day in our empty condo and trapped with my loneliness and boredom. All I really have is my memories.

  • Kym
    4 months ago

    This made me sad. I wish I could come visit you, bring some coffee and have a chat.

  • ElseN
    4 months ago

    Has anybody heard of Pam Bartha? You should! Google her. Former MS sufferer. Has many good things to share re: breaking free from the prison that is MS. And if this comment isn’t worthy of this website, shame on all of you!

  • Jay13
    4 months ago

    Thank you!

  • ElseN
    4 months ago

    I just the read the “rules” here in order to comment. Geeez, many of them so restrictive they fit right into the “prison” feeling. Anyway, I feel the same, and it is indeed sad that there is not a way to reach out and chat with each other, in an effort to relieve the isolation. It not only is REAL, it is both harmful and painful!!!

  • Kelly McNamara moderator
    4 months ago

    Hi ElseN.

    Thanks for the comment!!! And, thank you for reviewing the rules before posting! We want to ensure MultipleSclerosis.net is a safe space for all so the community rules help us maintain this safe space. There are a few ways you can participate and reach out to others in the community! You can submit a story (https://multiplesclerosis.net/stories/) or a Q&A (https://multiplesclerosis.net/q-and-a/). You can also participate in the forums here: https://multiplesclerosis.net/forums/.

    Best,

    Kelly, MultipleSclerosis.net Team Member

  • lcal
    4 months ago

    I’m laughing as I read your post because RULES? We were supposed to read RULES? Lol
    What is worthy is your individual business , as long as anything is not attacking ppls race, creed, religion, etc, i think speaking what is relevant to you is what matters and not for anyone else to judge.
    Lisa

  • muse77
    4 months ago

    Boy, are you ever right. You hit the nail on the head. Why people think my life is easy is simply denial on their part. I can explain and explain, but I get dismissal even from those who promised to care for me. As this disease worsens, I can’t even get paid for recent book editing. I don’t do it for fun, I need the money! I can’t work, and if I can’t pay high power bills, I can lose my home and literally end up on the street – which is an awful prison in itself. I have no one who will advocate for me. I’m the oldest, am supposed to take care of everyone. It honestly makes me lose respect, and trust, for most of my family and friends.

  • Rogue
    4 months ago

    A very big yes!
    Momentarily I’m falling back into my old depression because of the numbing / paralyzing my -SP-MS is causing to my legs and body. As always when I make plans to do something fun, this MonSter takes it away and I’m left sitting at my computer sinking deeper into this black hole of my prison.
    It hurts, mentally, physically … I’m tired of being tired, the pieces in what I’m breaking are getting smaller everytime.

    Thanks for your blogs, it’s nice to know it’s not just me.
    Good luck.
    Love Kar-Li [aka Rogue]

  • muse77
    4 months ago

    Rogue, I feel you.

  • Devin Garlit moderator author
    4 months ago

    Thank you Rouge, so sorry to hear. I hope you can see from all the comments that you are most certainly not alone!

  • muse77
    4 months ago

    Because people here have tried to repair my home, I’ve been trying to cope with extra sensory input. But the stress of it has taken its toll, and my balance, vertigo and coordination are really going. And here I am, by myself. I’m scared, that’s the truth.

  • DDeFord
    4 months ago

    Yes , there was and still are days exactly like that !I am very lucky as I was diagnosed 23 years ago. I can still get around with my Walker ! I still have my bladder control and bowel control . But my whole right side is truly affected . I am on Tecfidera now after 12 yrs of remission on Rebif . When that stopped working it took half a year to find something that worked . My disability now holds me back . Stress is a killer so trying to always have a good attitude is difficult .I have learned to like my own company because that’s the reality . Thank you for your articles Devin . All the best

  • Devin Garlit moderator author
    4 months ago

    Thanks so much for reading and sharing your thoughts DDeFord. I very much appreciate that!

  • Sbyrd2
    4 months ago

    Devin,
    Yes again you have described daily life for majority of us ! Thankful yes fortunate not to be bed bound with all symptoms I STILL HAVE BEEN DENIED DISABILITY. That with all documentation who will hire me?? Lol fired after days missed. Life goes on our our journey… Thank you

  • Devin Garlit moderator author
    4 months ago

    Thank you Sbyrd2! So sorry to hear of your situation. I highly recommend looking into a disability lawyer if you haven’t already, they can make a tremendous difference.

  • Lily
    4 months ago

    Sometimes I refer to it as being under ‘house arrest’.

  • mcknighm
    4 months ago

    Thank you , Devin for this article. I enjoy reading your articles. This one is so true. MS limits my mobility and I feel trapped by not going out much anymore..

  • Devin Garlit moderator author
    4 months ago

    Thank you mcknighm! I hope you can see by this, that at the very least, you are not alone in your struggles!

  • GloriaSkelton
    4 months ago

    What a great analogy! I’m just grateful that I don’t feel this way all the time. That gratitude helps me to appreciate how much worse others have it and how much worse I could be with it. I’ve got PPMS so it’s a daily dealing with chronic varying symptoms from which there is little to no relief. At least I’m not stuck in the bed or wheelchair. Another reason for a grateful heart.
    Thank you so much for providing something that I can relate to totally ❣️ My hope Is that one day we will all have a release from this prison that we’re being held captive in. Until then, we can only cope the best way we can find for us individually according to our disease progress and circumstances.

  • Tonya Carter
    4 months ago

    Yes!!!!! That is a good way to describe it.

  • Nancy W
    4 months ago

    I feel more like the person with a tracker that is restricted to a certain area than a prisoner. I think after 15 years, I have learned my limitations. There are things I know I can’t do, so I have to let them go.

    But there are aspects of imprisonment that I can identify with. Loneliness is one. I have friends who are older than me and retired, who are always going somewhere and doing something. I can’t handle all that activity so I am home alone a lot.

  • Devin Garlit moderator author
    4 months ago

    Thank you Nancy W!

  • Kimberlybthatsme
    4 months ago

    Wow! Great article…this so rings true to how I feel at times. When the fatigue is so bad you just can’t do anything or the pain is so severe just going to the store is a chore. Trapped in our bodies…hit the nail on the head with that one!

  • Devin Garlit moderator author
    4 months ago

    Thank you Kimberlybthatsme!

  • scooterg
    4 months ago

    I can really relate to this, I never thought about that analogy but makes a lot of sense! Great read! I’m in the process of getting my truck upgraded where I can drive again! That’s a real blessing being able to drive. It puts a real strain on a marriage when you have to depend on your wife to take and forth to work and who also has never been on time for anything! Lol

  • Devin Garlit moderator author
    4 months ago

    Thank you scooterg! Happy to hear about your truck getting upgraded. I’m sure lots of folks would love to hear about that!

  • Mikeroe3
    4 months ago

    Question for you… What is the process to get your truck equipped for you to drive it?

  • cheyennejourney
    4 months ago

    Thank you for this article. I can relate 100% and have often used the prison analogy to try to explain my life, as I experience it, to my family and friends.
    Your article will help me be better able to articulate my thoughts.
    Thank you!!!

  • Devin Garlit moderator author
    4 months ago

    Thank you cheyennejourney! That is always my hope, that something I write can help explain how someone feels to their family. It’s how I started reading this site ages ago, looking for ways to articulate how I feel, things I can share with my own family to help them understand.

  • Tess
    4 months ago

    This is how I feel most of the time. Isolated and exhaustive pain.

  • Devin Garlit moderator author
    4 months ago

    So sorry to hear that Tess, as you can see here, you most certainly aren’t alone. Many of us feel that same way!

  • sevensix
    4 months ago

    Devin;
    Bless you for writing to a pen pal in prison. I have been writing every Monday since 1993 to a fella who might never see the light of freedom. Every week he gets a letter from “home” because his home is a concrete box and nowhere to go. Thank you for writing.

  • Devin Garlit moderator author
    4 months ago

    Thank you sevensix, it’s certainly something I wish I had started sooner!

  • Jan
    4 months ago

    Hi Devin, nice post as usual. I get what you were saying and also feel that you were respectful of those in prison. Just trying to make a relatable metaphor for MS struggles.

    I’m currently not driving, with a horrid year 13 (too much stress; two family member deaths/funeral travel), much pain and weakness. Mayo had predicted a more benign course at the start, with 5 and 10 years being better predictors. Always a slow downward slide for me (no mountainous-type spikes to warrant meds, though I was/am needle averse and peeved about the thought), but this year has been the worst. No one could have predicted the huge amount of stress. Yes, now it’s like being imprisoned (or what I imagine that to feel like from my former perspective).

    But not so with my husband and kindly friends helping. No DMDs ever; in Terry Wahls’ book, I think that she clearly states that diet worked for her but may not for others. She also tried meds, and they didn’t help. (But healthy eating never hurts, I think). I don’t fault her. Glad for her that eating has helped. I’ve been mostly on her Levels and 2 for years (but no organ meats and high-stress cooking ala Level 3).

    Will not attempt Ocrecvus with the PML potential (I am high JCV, have SPMS). Am not convinced about the drugs. Would they have helped had I jumped on that bandwagon early on (and when I could still jump, both on land and on the ice)? No one knows. But those on meds may or may not have fared better. Am convinced about big pharma profits.

    So, I think a cure for loneliness may be found in the word, “value.” What do we impart/do to help others? You’re doing that with your writing here. No, not likely as we’d prefer, but making some kind of impact can speak miles.

    For me, it may be dealing with a TiLite wheelchair. (Gasp: me, in a wheelchair?? Hmm. If inevitable, it may be a way to convince myself and others that I am still the same person inside. And the key words there is, “myself.”)

  • eggladyM1
    4 months ago

    I started Copaxone when I was diagnosed with MS in 2006. 11 months later I became allergic. Tried Rebif but became terribly sick. I haven’t been on anything now since 2007. I agree with you. The first neurologist I had assured us that they didn’t get “kickbacks ” from the pharmaceutical companies. Strange since we never asked or thought about that. He tried to get me to take Tsabyri. Not a chance! The neurologist I have now, tried to bully me into taking Tecfidera. I’m sorry, but the side effects are just too risky. I don’t get what is so hard to understand about that. Even if I wanted to, I certainly can’t afford the price tag of $1900.00 per month. I don’t need the stress . I’m just glad to know that I’m not the only one who believes this is just a money racket. If it wasn’t, it would be affordable. Yes, certain things are getting harder to do, but everyday that I can put one foot in front of the other is a good day. Praise the Lord!

  • scooterg
    4 months ago

    I am now in a wheelchair at work and it has improved my attitude ten fold! I’m no longer stationary, I have been using a walker for several years now and still do at home and in other settings but I have my freedom to move around again. Don’t get me wrong I fought it tooth and nail but was actually forced due to an accident where I broke my toe and wasn’t to put any weight on it! It’s been a blessing! Oh by the way I fought the walker for a long time also, I was a wall walker and still do that for very short distances! Don’t be like me and let your ego get in the way of a possibly better quality of life.

  • Jan
    4 months ago

    Ooh–a couple of typos. Will I ever learn to proof thoroughly on a site in which I cannot edit?!

  • Kissey91
    4 months ago

    Devin …. you hit the nail on the head for me today. At least I was in prison with my 2 little dogs. They made me laugh every day. They comforted me when I was sad. Today one of them got sick. She is at the vet now. My vet bills are sky high this summer. I am going to have to make some difficult decisions. I will not let them suffer. I cannot be that selfish.
    I know I am paying more than I should for rent. But it is so difficult to find a place where you can have a pet. Pets make life so much more tolerable.
    Sorry Devin. I feel like I am rambling and not really addressing you great article. No you are not alone. Yes. Sometimes this feels like a prison

  • Loopyone
    4 months ago

    Sounds like your dogs have a good mommy. Vet bills will kick your butt and your wallet. Maybe something will come up for you to rent that is less expensive and will allow your dogs.

  • pkurkowski33
    4 months ago

    I hadn’t thought about that until now, but I think that’s a very good comparison. Especially as I sit here trying to think of something fun I could do while my husband’s out golfing! I usually don’t feel seek down or sorry for myself, but lately I have been for some reason. I was in assisted living for 14 months and although I was the youngest one there, I’ve been wishing lately I was back there. It is nice to be in your own home, but it’s also nice in some respects to be around people who may be in similar circumstances and to have people taking care of you when you just don’t feel up to it. Also, in assisted living you almost always have someone to visit with, play cards, watch movies etc. The hard thing for me is not knowing how long I’m going to live. Other than being in a wheelchair, I’ve been very healthy. I do have aches and pains and have to deal with leg spasms, but feel fortunate I’m not worse. Maybe a pen pal would be a good option!

  • Devin Garlit moderator author
    4 months ago

    Thank you pkurkowski33,I very much know what you mean about being around someone! I’m always looking for ways to handle that, which is how I thought of the pen pal idea.

  • Jan
    4 months ago

    You know, NO ONE knows when we will die, for the most part. So, we each need to make the most of each day as able.

    And you had a good perspective on assisted living: one person’s prison is another’s grateful relief!

  • Airtripper.NZ
    4 months ago

    Lol, how prophetic. This is part of a text conversation I had with someone yesterday…

    “Last night I had a dream that I was in a huge underground cave system that was part museum and part library and aquarium, where in some of the caves they had huge windows and behind them were sharks and whales. Apparently there was an underground sea next to the cave system in the desert.

    I think the cave thing was about the overwhelming feeling of depression crushing me and making me feel claustrophobic and doomed.

    Or it’s cos this house is dark and dingy and miserable and I can’t leave it.

    Feels like living in a damp and very untidy cave.

    I’m surprised I wasn’t dreaming about dungeons.”

    So yes, you could say that the feeling of imprisonment is with me all the time.

  • Jan
    4 months ago

    That reminds me of the boys trapped in a cave in Thailand recently. They were rescued, but what a claustrophobic ordeal that was, don’t you think? (And one man lost his life in the rescue).

    I myself think that I have a choice: to allow the feeling of imprisonment, or to come to terms with it and find another way out/another perspective, even if forced to do so by my health. (Not all there yet, but it is a goal).

  • Jay13
    4 months ago

    I have MS!

  • emily-e
    4 months ago

    Hi Devin!
    Thanks for writing this.
    As a newly diagnosed person with MS, I’m still getting my head around my current situation and what my future will be like. I am finding that sticking to a routine (especially a sleep routine), is very helpful for keeping the dreaded fatigue and brain fog to a minimum. I found your blog through Facebook and I read your articles on dating with MS and when to disclose the fun topic. Yours was an interesting take on the subject. The fact that you’ve gone through that struggle yourself makes your writing more realistic and any advice you share useable. I really appreciate that you share your struggles and don’t sugar coat anything. So thank you.

    Emily.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much Emily! Very much appreciate you taking the time to say all that!

  • Jay13
    4 months ago

    Why don’t you do HSCT? Or, follow Dr. Terry Wahls diet protocol?

  • scooterg
    4 months ago

    HSCT is very expensive and I spent my money on stem cell treatments in Panama. I went twice and that was all I could afford. The other thing to consider is no two MSers are alike, what works for you might not work for someone else. While I was in Panama my second time I met a lady that had the HSCT in Russia her home country and I don’t know how bad she was before but she said she didn’t see much improvement. I also met a guy the PPMS and he had been going to Panama for years and the stem cell treatments were keeping it at bay. I’m glad it works for who it does but it’s not for all! Dr. Burt won’t take you if you are SPMS. I tried to get in the study when it first come out and since it had been over a year since I’d had an exacerbation he wouldn’t take me. Had a nice stay in Chicago but that’s all I got out of it!

  • TiffaniAkaLefti
    4 months ago

    Simple answer = money!!

  • Devin Garlit moderator author
    4 months ago

    Jay13, despite what many people think the Wahls diet is completely unproven. There is anecdotal evidence, which, in a disease that can have different severity on people is very hard to trust. There haven’t been any true independent studies showing any proof that a diet can stop this disease. Trust me, if a diet where a cure, we’d all be on it. Everyone should eat healthy and absolutely take care of themselves, but don’t expect it to cure the disease. HSCT is still being studied in the US, it has promise, but there have also been deaths, and many cases of it simply not working (which is a massive, and dangerous, procedure to undertake for many people).

  • Jay13
    4 months ago

    You’re being duped. Swedish Study Suggests Stem Cell Transplants as Possible Treatment for Aggressive RRMS

    September 12, 2017 by Magdalena Kegel In News.

    That’s from a MS site.

  • Jay13
    4 months ago

    I did HSCT and found it fine. I left the country because the US is behind (face it). The number of deaths is way lower than medicine they have you on. Many cases show that 20% – but if you look at, the majority of people have serious problems. I did mine early.

  • Lifeisnotfair
    4 months ago

    Jay, was that question for me? If so, I have thought about HSCT but since insurance doesn’t cover it, I couldn’t afford it on my own so it’s out of my ability to afford. I have always wondered about doing it myself, but I’m also a little chicken to go through the whole process….

  • Jay13
    4 months ago

    If you need insurance and you have Relapsing Remitting, it is covered. Call Dr. Burt of Northwestern University.

  • Lifeisnotfair
    4 months ago

    Hey Devin; I’m sooo glad that you wrote this, because it’s exactly the way I feel all the time now! Not feeling well enough to leave the house has been my new normal for about a year now, ughhh! I was previously on the drug Tysabri for around 2-1/2 years and I stopped it because it just didn’t seem as though it was helping me anymore. This was probably a big mistake, because several months later, I took a bad turn and all of my symptoms became much worse! During this time, my MS neurologist quit his practice and I didn’t get a new doctor right away. I started to really go down hill. I had a really bad kidney infection and got a few more symptoms that I never had before, which are also part of this new normal…. My ataxia worsened, I’m not sleeping well, I ended up having a trigeminal neuralgia attack that was the worst I’ve ever experienced before and it lasted for 4 days. My tremors got worse, my voice got more hoarse and my vision took a hit with double vision. I feel like I’ve never regained the motivation to do anything anymore. I dropped off of social media, stopped calling friends and family and everyone was wondering what was going on with me! I have a new doctor now and she’s going to put me on Ocrevus and I’m praying that this will make a difference in my symptoms. I’ve never thought that I would be so content to stay in the house, see no one, and not even talk to anyone on the phone. Believe me when I say, I know where you’re coming from and YOU ARE NOT ALONE! I’ll be thinking of you and hoping you can get up every day, with the strength to get through the day and God bless you for writing to US!!! I love following you and we need to stick together and hold each other up every day! Sending you hugs and blessings!

  • Jay13
    4 months ago

    Why don’t you do HSCT or Dr. Terry Wahls diet protocol?

  • Mary
    4 months ago

    I feel trapped also in this world of no work and meds and trips to infusions. It is a bad joke merry go round which brings not much joy after 20 years. When you were working big jobs and a competitive athlete and avid traveler and now the smallest feats are accomplishments… Grr. Excellent insights as usual. Thank you so much for your clarity.

  • Devin Garlit moderator author
    4 months ago

    Thank you Mary, appreciate you reading and sharing your thoughts!

  • jacie6783
    4 months ago

    I totally agree with you. But I have the added discouragement of having siblings that dismiss my symptoms, make me feel invisible in every family gathering, and today, pushed me into a complete depression based meltdown with comments that I need to “understand” that I have to basically suck it up. If I didn’t have obligations to my wife, my loving dogs, and a few friends, I’d be off this planet.

  • lcal
    4 months ago

    Hi jacie6783
    I have to first,2nd Devins reply to you and hope you will follow that lead.
    I have been dealing with all the discussed issues with MS and heneplegic migraines(which caused a stroke) from age 19 and I’m almost 51.
    With that said, it has only been in the past year or so that I’ve learned to value my own self awareness of
    My daily life. I am now accepting(when it counts) of my own limitations and sometimes the harsh boundaries with family and friends I’ve finally been able to set without guilt and/or feeling like I have to explain myself. As far as comments, (which most of the time I find are not meant to harm) or opinions of others my mind takes in only what is useful for me and rids itself of what is not. What clicked for me was not being able to handle stress as I used too,be it small things or crisis situations. I felt ready to go down with the ship until I said f#%^< this and refuse to any longer be bombarded with issues right when someone else needs me to be. If I am able to physically n mentally at the time of another’s choosing I certainly am there for that family or friend.
    My difference now is I DECIDE not
    Anyone else. My life has become so much more at peace. I am mentally and physically stronger!
    SO, in the end Jacie, I wish for you to talk with someone, meditation helped me, whatever avenue for yourself to come to the mindfulness of YOU FIRST and THATS OKAY
    LISA

  • Devin Garlit moderator author
    4 months ago

    Thank you jacie6783, I very much understand what you are going through. It can be especially difficult when family doesn’t understand. I definitely encourage you to talk to someone though, it can be extremely helpful, even just from a venting standpoint. Feelings like yours are very common (https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/) and can be serious.

  • CubanQt36
    4 months ago

    Devin, Thank you so much for sharing your experiences. I completely understand your feelings. We seem to have many of the same symptoms. -Idi

  • Devin Garlit moderator author
    4 months ago

    Thank you CubanQt36, it’s easy to feel like we are the only ones that can understand, but remember, many of us are going through the same, or at least similar, things. We are never alone.

  • Jodek
    4 months ago

    Devin, as always i agree with your posts. I was put on disability 6 years ago. Can drive short distances to store and Doctors. Home alone ALOT!!. There is only so much cleaning you can do in a small house! Im thankful that im still mobile, its the cognitive issues, and fatigue thats the worst! Besides sharp jabs of nerve pain randomly all over body 24/7. I may look into that pen pal program. I really need something to do. Well, thanks again for your posts

  • Devin Garlit moderator author
    4 months ago

    Thank you Jodek!

  • ripster
    4 months ago

    Devin,

    I totally get your analogy to prison… i too seem to have the need for a strict routine that I need to follow. When I break that routine I often find myself paying for it in some way with varying symptoms flaring more than usual. I have a 4 yr old also so that presents many challenges.
    I had to stop working which is very hard to deal with (was denied ssdi) have to wait 20 months for a judge to decide, so financially, mentally and physically this disease really is devastating but I often feel my home as well as my mind is my prison. But I am a fighter and like you will never give up.
    Thank you for all your postings…. I find them very comforting to read.
    Keep fighting

  • Devin Garlit moderator author
    4 months ago

    Thanks so much for sharing what you are going through ripster, you most certainly are not alone!

  • JimmyMac
    4 months ago

    I think I see your point but I swear I feel more like brare rabbit. To others, my living quarters look, well, unlivable and often times they make horrible assumptions about them. Often, they are right but it is often such an advantage. Look, I absolutely hate being on disability but I am and it’s because of nothing I’ve done. Yeah, I’m alone more now but before I was diagnosed I would spend hours by myself. So what’s different? I can complain about MS and what it’s done to me but really why. Yes, we are in a form of prison that we will never be released so I think we need to find new ways to make us feel whole without putting I know it’s nothing to you tags on our accomplishments. It’s our new reality so settle in, it’s going to be lengdary

  • Devin Garlit moderator author
    4 months ago

    Thanks JimmyMac!

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