Busy Being Sick

Busy Being Sick

“He doesn’t work, he looks fine, I wonder what he does all day?” That’s a question I’m sure people have often asked or at least thought about me the past few years. I would probably wonder the same if I didn’t know me. Sometimes, I think the people that do know me wonder that as well. Honestly, as time passes, I’ve caught myself thinking that, too – What do I do? What have I been doing? Well, when I’ve thought about it, I’ve been busy being sick. Many people have a hard time understanding that having a chronic illness can actually be a full time job.

What if we just chill?

Recently when I had to, yet again, bail on plans, I had a friend say they’d come over and just chill with me on the couch instead… to which I said I couldn’t. I think they were perplexed and even a little offended that I said no to the offer. While there are times that might work out, the truth of the matter, is that when I cancel on something or say I can’t come out, I’m not just sitting at home laying on the couch watching TV like a grade schooler who stayed home sick for the day. There may be moments that are like that, but when I bail on plans or otherwise say I can’t come out, it’s not exactly that much of a picnic. Generally, wherever I am (bed or the couch), I’m likely struggling to get comfortable, moving from spot to spot. Alternating twisting and turning, sitting and standing, trying to somehow to get relief as pain and spasms shoot through my body.  If that’s not the case, I’m likely fatigued, which is not the same as tired. It literally becomes hard to move, hard to speak, hard to make it to the restroom or even change the channel. I may not have those issues the entire time, or I might, it’s unpredictable. Point is, I’m not exactly good company to others. I also feel pretty awkward with others seeing me like that.

Where does the time go?

While that may be a specific moment when I’ve quickly canceled plans, over the long run I realize I’m pretty busy with being sick, too. My week is made up of plenty of moments like that where I can’t really be all that productive. When I am productive, whether it’s trying to write a piece like this, or loading and unloading a dishwasher, or laundry, or any other task that might seem trivial to most people, it ends up taking a toll on me. Pretty much every small task I accomplish throughout my days requires that I rest and lay down for a bit afterwards. It’s not only frustrating, but it takes up time too. By the end of each day and especially the end of each week, I’m often left wondering “Where did all the time go? What did I get done?” It turns out that much of my time is spent recovering from whatever productive moments I did have.

Being sick is a full time job

The reality for many with chronic illness is that being sick is a full time job. While we may not realize it, a lot of what we do or the way we do things during our day is based around our illness.  That isn’t a sad thing, it’s doesn’t mean we’ve given up. It means that we’re actively fighting against our disease by making changes and adapting to the hand we’ve been given. It’s pretty hard for people to understand just how much of our time our illness takes from us. I’m the sick one and even I have difficulty understanding it. The fact of the matter is, being sick takes up time, while that time may seem unproductive to most people, I prefer to think of it as actively battling my illness. That battle doesn’t mean that I’m free and having a good time though, I’m still busy, just busy being sick.

Thanks for reading!

Devin

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Comments

View Comments (57)
  • CatMom
    5 days ago

    Devin, you really hit the nail on the head! I shared this article to my FB page and asked my family and friends to read it. I sometimes don’t make plans so I don’t have to worry about changing them. Thank you for giving me the words to share with my family and friends.

  • Devin Garlit moderator author
    2 days ago

    Thanks so much CatMom! Very much appreciate you sharing it as well, I hope it was helpful!

  • chong61
    5 days ago

    Busy Being Sick

    Thank you for putting into words what I have tried to convey to my family. They are super supporting, but don’t seem to grasp that it is ongoing and not what I did to cause my legs to collapse or why I say I am tired. I especially like how you distinguish between tired and fatigue. I have printed your article and I plan to give it to each child to better understand that I am not their very active, social Mom anymore. There is nothing I have done that has me in my chair all day. They always want to know if I have been trimming my hedges and tired myself out. Only a person with MS understands.

    Thanks again, I see myself in all of your postings.

  • Devin Garlit moderator author
    2 days ago

    Thank you chong61! Appreciate you taking the time to comment!

  • SnowCap
    6 days ago

    Hi, Devin,

    Once again, something I can relate to well! And I love how you explain it, in a succinct way. This is something many of us could share with our family members and close friends, to help them understand. It’s hard for people without the experience of the disease to understand that while someone can sometimes venture forth and look just fine, there can be a whole different story when the person is at home.

    Particularly, I appreciate that you mentioned the passage of time and wondering why more doesn’t get accomplished. It still surprises me quite often how little I’m able to accomplish, even on “good” days. Due to cognitive changes, in addition to chronic fatigue and pain, I find that almost ANY activity — from doing laundry to sending an email — takes me about 3 times as long as it used to before my symptoms kicked into high gear (that said, I want those recently diagnosed not to expect this; I lived for more than 20 years with RL-RM MS, during which time, I was more or less “normal,” a high-achiever, and nobody even knew I had the disease). I still underestimate the time activities and projects will take me, and as a result, often can’t finish things I set out to accomplish. Learning to accept that — and being OK with this limited efficacy — is probably the most difficult thing of all for me in dealing with this disease. Positive self-talk is vital, but so hard sometimes!

    But one thing you don’t mention here is just the time that attending to various doctor appointments, tests, learning groups (fatigue management, meditation, DBT techniques, etc.) take up. Booking and keeping track of those often seem like at least a part-time job on their own; and during busy periods, contribute significantly to even more fatigue!

    So while we may not be busy “working,” those of us on disability or even part-time disability (I currently work 1/4-time) are indeed not sitting around watching TV on the couch all day!

    Please keep writing, Devin! You explain things well, in accessible ways!

    Shauna

  • Devin Garlit moderator author
    2 days ago

    Thank you so much SnowCap (Shauna), appreciate you sharing some of your story as well!

  • Piper71a
    6 days ago

    Thank you for a different perspective when dealing with MS. I’ve never thought of looking at our daily struggles in that way and this is spot on. Well written.

  • Devin Garlit moderator author
    2 days ago

    Thank you Piper71a!

  • mascha
    6 days ago

    I think I missed this article:( unless I forgot.
    Great article. I often think this and wonder what else i can do. By the time I’ve done my housework and looking after lunches, good shopping etc I’m tired, fatigue sets in. I have no energy left. Although i try to venture out afterward and end up coming home completely fatigued and in pain. I’m bored of not being able to do my daily tasks easily anymore.
    Finding myself feeling useless.

  • Devin Garlit moderator author
    6 days ago

    Thank you mascha! I know that feeling very, very well.

  • sherrema
    6 days ago

    Thank you so much for your writing. I always enjoy reading them. My husband has had MS for 14 years. Reading your posts help me understand as much as I can , what he goes through everyday.

  • Devin Garlit moderator author
    6 days ago

    Thank you sherrema, I’m very happy to hear that!

  • AnywhereOutOfThisWorld
    6 days ago

    Devin you have it right again. I love when people without Ms give advice, like you should get out more. That works out for me (not), like on the 27th of last month I went to my psychiatrist appointment today & he decided to up my dosage of Lexapro for anxiety/depression from 10 mg to 20 mg. I used to always have an issue with picking my scalp I assume due to anxiety but since I started the 10 mg of Lexapro I moved from my scalp to picking sores till they scab over on my legs & arms (like anytime I get a scrape or sore I will pick at it till it bleeds, scabs over then I repeat the process). So he thinks increasing the Lexapro will help me to relax more. Right after I got out of that appointment I was leaving the building and I lost my footing & fell all the way to the concrete skinning my right knee pretty bad in two places. A group of older men walking out behind me helped me to my feet. So yeah getting out more isn’t the best advice clearly. People who give me the sideways glance for having a disability placard hanging from my car mirror are beyond ignorant but I’ve learned to ignore it. My own mother (a retired nurse) doesn’t take my Ms seriously. It’s just a battle that I must fight alone and I suppose that is what is best since bringing people without Ms in on my daily struggles only proves in the end to push them further way.

  • lcal
    6 days ago

    wow!! Im a lil embarrassed to say that although I know and recently admit I have anxiety, I never would have thought to corelate picking at any scab, cut bump etc Ive ever had as part of it. Ive always just looked at it as its who I am, what I do(although I dont announce it)
    its the same compulsion as not being able to walk past a butten without pushing it. lol

  • SnowCap
    6 days ago

    Hi, @anywhereoutofthisworld,

    Have you thought about sharing articles like Devin’s with your mom? I find even my own husband — who sees my daily struggles — has trouble understanding this disease, because it’s just so damn weird! I certainly hope you’ll be able to get some support from her, and can only imagine how hard that would be.

    I, also, can’t stop picking — in my case at my hangnails and dry skin on my fingers. Didn’t really tie that in to anxiety or MS before, but will bring it up with the doc next time I’m in! So thanks for bringing that up.

    I hope you find someone who can be an ally and support you in this journey….

  • ShelbyComito moderator
    6 days ago

    Thank you for sharing what you’re going through, @anywhereoutofthisworld. I can only imagine how isolating living with MS can feel like, and even more so without having the understanding of your own mother. I’m also familiar with the skin-picking anxiety and know how frustrating and uncontrollable that can feel. That must be so hard to manage on top of MS. I hope the medication adjustment helps – please keep us posted if you feel comfortable doing so. Thinking of you! Shelby, MultipleSclerosis.net Team Member

  • Devin Garlit moderator author
    6 days ago

    Thanks so much AnywhereOutOfThisWorld! Appreciate you taking the time to share some of your experiences too!

  • Jessica
    7 days ago

    This!! It’s spot on!! Great article that conveys what so many of us feel & experience every single day.

  • Devin Garlit moderator author
    6 days ago

    Thanks so much Jessica, very much appreciated!

  • jdarie
    7 days ago

    Devin, Thank you for your very helpful article! It was what I needed to read today!! I am struggling to adapt to the Intrathecal Pain Pump for lower body aching, pain, spasms( hard to tell what is what!)! I had it put in 11/14/18 and found instant relief when laying down (aching) in hamstrings but needing more doses, Daily is 1mg of morphine with 6 doses of .2mg every 4 hours if needed. For the testing doses the Baclofen made my legs WEAK! But since the morphine isn’t doing the full trick I may opt to have a micro-micro dose of Baclofen added! We’ll see. Yes, it’s not a cut & dry disease in terms of management and being that it’s Invisible in nature and many many many people (even MD’s (( oh, Really)) don’t fully understand a complicated and invisible illness, like MS, makes it more difficult for us. After this many years I have opted to not share a lot, when I am around people. The judgemental types really depress me! Thank you again, I appreciated your article!! Oh no! I am late to work and need to do a bladder catheterization, so as Not to wet myself!!

  • Devin Garlit moderator author
    6 days ago

    Thanks so much for sharing jdarie! Very much appreciated!!!

  • Rachaelmt
    7 days ago

    Sorry, but myself and most MSers I know do NOT feel ‘sick’ and we are NOT ‘sick’. People might have their times where the MS kicks them as is the same for me too but I think that walking around saying that we’re ‘sick’ is where a lot of confusion and discrimination comes from when it comes to the general public and employers and anyone who has no idea about MS and is just frightened of it, of us and of what they can and can’t say or think. MS is not a sickness….it’s a condition and people should realise that calling yourself ‘sick’ all day, every day has a strong effect on your psyche. You WILL be ‘sick’ because you cionstantly say you are ‘sick’. Change your thoughts and your mindset and you will change your world. 🙂

  • Devin Garlit moderator author
    6 days ago

    Thank you for sharing your opinion Rachaelmt. While I think that’s a matter of semantics, I do think that a great many people use the word sick. You may not feel that way, MS may not have that level of impact on you, and I hope that it never does. I try to think back a couple decades and maybe I thought that way too, maybe when I didn’t understand what it was like to be disabled from the disease. I do hope you can open your eyes to the experiences of others though, to those that are in a situation, not because of their attitude, but because a disease has ravaged their body, has taken their livelihood. I hope you can realize that simply changing at attitude won’t removed the lesions that are scattered through their nervous system. I hope you can also realize that the vast majority of people that use the word “sick”, use it because it is accurate to them. Again, I hope you don’t progress the way other have, but please try to take a step back and understand that not everyone has been as fortunate as your. Also, saying that changing your attitude and the words you use will let people walk again, make people pain free, etc, that’s pretty offensive to many people who have had this disease for a long time.

  • Monk
    4 days ago

    Well said, thanks Devin

  • jdarie
    7 days ago

    I remember a person with MS telling another person, without MS, that she couldn’t see well anymore. And the other person had the audacity to say back, “Well, what is it you don’t want to see?”

  • Lucylucylucy
    7 days ago

    Wow.That is nuts!
    I worked for a lady who had MS .She was in her early 60’s at the time and was diagnosed in her 20’s.
    When I was diagnosed with MS she did not want to believe it.One of her reasons was that I was past the age limit (her belief) to get MS.
    It was almost as if she did not want to “share” MS with anyone else.Lol! I am more than willing to give this disease up and definitely don’t see it as the only thing that defines me.
    That was one of the more bizarre reactions I’ve had by someone regarding MS. I suppose it won’t be the last.

  • jdarie
    7 days ago

    I hear you! But it comes with time and what level of disability you are at, to accept certain terms, like care-giver and sick. I am still somewhat mobile, since I have been diagnosed in 1977, I can now use that word “sick” somewhat! Articles that made my husband a “caregiver” really use to “piss” me off( I now use intermittent urinary catheter too). And saying I have a “condition” made me feel better, back when MS didn’t make me so darn SICK ! And as I believe Devin was saying, is that you don’t call a condition into work! At least I never did when I was a Critical Care Nurse and had MS! What language we use can help/not help how we feel(feelings are not real to other’s, our feelings are invisible, too) but an elephant in the room… is still an elephant ( I just typoed relative !! Haaa ). Sick or a Condition, are the same thing, depending on when, where and how, in my opinion, they are used, regarding MS . In the article I believe it was appropriately used.

  • zeus73
    7 days ago

    There are days when I feel “sick” and no other words define my situation better. There are days when I feel better and sometimes even good. There are zero days when I feel well enough to not be preoccupied to some degree by my MS. I am strong and tough and have been rolling with the punches since my diagnosis for thirty years. No matter what I call it, MS is a disease that makes me sick a lot. My battle and my goal is managing all its antics while I live my life.

  • giraffe516
    7 days ago

    You are correct. Being sick is a full time job. Combine that with working 6 days a week and there isn’t much time for anything! My days start at 4:30 i leave the house at 7 get home at 7. Do some work around the house eat and pass out!

    What is so frustrating is instead of taking 20 minutes to vacuum the first floor now takes an hour!

    My house constantly is a mess and it drives me nuts! And forget about time to exercise. Which i know i need.

    Plain and simple it all sucks! But these were the cards that I was dealt so i push on. Thinking it could be worse!

  • Devin Garlit moderator author
    6 days ago

    Thank your for sharing giraffe516, that is an intense schedule! There are many people like you though, that struggle through work and because of their illness can’t really do anything else. I most certainly went through a similar situation many years ago, it’s very hard.

  • jdarie
    7 days ago

    If you 7-7 is 5 days per week, there are very few healthy people that could keep that Schedule! Even if 4 hrs are in your car, listening to book and putting up with bad weather and traffic, I don’t know about other’s that are appreciative of Devin’s article, you are Darn lucky!

  • Loopyone
    6 days ago

    that’s what I was thinking too. Wow 7-7 6 days a week? That’s pretty incredible.

  • MommaMia520
    7 days ago

    Oh my goddess!!! You totally nailed it..the constant frustration we already have towards the roller coaster of MS, and I’m supposed to explain why I’m not able to work?!? I hear myself and it sounds ridiculous lol!
    My general response is that I don’t like not having any money either, if there was a realistic way for me to get some.. I WOULD!!
    Thank you for your wonderful articles, always helpful

  • Devin Garlit moderator author
    6 days ago

    Thanks so much MommaMia520!!

  • rldoll67
    7 days ago

    Good article…the web is full of stories about people who “beat MS” with some diet, exercise or whatever their thoughts are…which may very well be true. Most people’s experience, imo, are more like yours which is similar to mine.
    Diagnosed in late 2010 and having showed symptoms since 2007 and probably much earlier. In that span of time, I went from the pinnacle of my career to being on disability and focused on doing my “1 thing” every day. The future is not guaranteed and fuzzy at best though like most people, we make due with what we have and extract the most out of life that we are able. I have always felt that so long as I wake up and do my best, things will work out the best they can…and there is an interesting upside to being retired in my early 50’s…freedom and time with friends and family that I otherwise would not have had. The time I’ve had to research and read MS related information has also helped me understand much and hopefully be more proactive and accurate in helping myself and helping my Dr. help me. Dr’s are people and some are better than others…as a wise man once told me…”do you know what we call the student who finishes last in their class in medical school?” The answer: “Doctor”

  • Mike H
    7 days ago

    rldoll67
    I’m hearing (reading) exactly what you are saying. I’m so in the same boat with everyone here (you too Marlene!) who is replying. I was dx’d in 2002 at 40 years old. Since then my life has made a complete change. Used to be more active, exercised, felt great. I STILL have a great marriage with 3 wonderful kids. Just celebrated 23 years with my caring wife. I’m so so glad she is my angel. An RN. She understands. My health on the other hand? Slowly spiraling downward…gone through RRMS. Into SPMS now. Relapses come & never completely leave. Legs weak, gait not so good, pain, spasms & major burn in both legs. From morning to night. Did pain meds… Nucynta was my most recent … helped some but I found out that this opioid is designed for shorter term use. Not prolonged. Was clouding my mind too much so I said to myself no more. No need to become an addict so now weaning off it. Mind feeling better but the burn in my legs has gotten even worse than before. Don’t know where to go from here. So I do understand how others feel with our friendly (NOT) disease. Wanted to also say that Devin has many friends in his “club.” We are not alone & this feeling brings some reassurance to all of us here…Try to stay strong, especially in the mind everyone! … Mike

  • Devin Garlit moderator author
    6 days ago

    Thanks so much rldoll67 and Mike H, our club is very large, and though some organization like to show the 5ks and those that are new with the disease, there are so many that have a different experience. Showing the positive is important, but I prefer to see the “real” myself and so do the best I can to just tell it like it is, because I know I’m not alone. I also think it’s comforting to know of others who go through it, who “get it”. Thanks again for sharing your thoughts and experiences!

  • Marlene1105
    7 days ago

    Thank you Devin! What an article! It is like you read my mind and thoughts I have had for several years (well since 2005 when I was diagnosed). My family always thought I was making excuses when I said “I didn’t feel well”. My Brother used to say, “People are going to stop inviting you because you never show up and people are getting tired of it”. Instead of being supportive and showing concern. When I was first diagnosed in 2005, my family acted like they were very concerned about my M/S. However, that all changed!
    At the beginning of my diagnoses, I used to get cards and flowers and then it changed to getting talked about and ignored. None of them ever ask me about my last doctor’s appointment or how I am feeling. If I ever bring it up, they make it real clear to me that they don’t want to hear it. However, they are certainly concerned about their neighbors or co-workers having a cold or the flu. I have been complaining long enough, however, I think you get the just of what I am saying! Once again, Devin, THANK YOU! This article made my day! After reading your article, I hope people will realize what us M/S folks go through on a daily basis and how hurtful it is!

  • zeus73
    6 days ago

    Marlene, My experience at onset is so similar but it was my husband (like your brother) critiquing my last minute cancellations and warning me about my invitations dwindling. He’s no longer around having announced that this was my disease, why should he be held back by it. I remember getting flooded with hallmark poetry, phone calls, kind gestures, prepared meals and all the rest when word got out about my diagnosis. Then silence. A friend told me “just remember, you’re today’s news. Be prepared for it to fade!” It did. I do think the hullabaloo helped distract me from my inner terror in the beginning though and I wouldn’t have known how to handle it if it had continued. Close friends, most far away, still keep a quiet watch but whether it’s by my choosing or the nature of the disease, my MS tends to be a solo journey. I’ve become accustomed to that. There are those times when I don’t know how I will go on alone but I must get something positive from being on my own or I’d make a change. When you said you had been “complaining long enough” . I’ve noticed a lot of folks here, like me, are often hyper sensitive about being perceived as “complaining”. There are probably a myriad of reasons why we feel this way. Some of it, maybe a lot of it, has to do with our culture being obsessed with youth, strength, resilience, beauty, grace, perfection and all the rest. For each of us, it’s a difficult muddy path we carve around the sharp edges MS puts in our way. But I read nothing in your words that sounds like complaining. I read your story and heard that some things may have disappointed or surprised you and that, like the rest of us, we carry on. I’m glad you wrote because my experience was similar. There’s comfort in that.

  • Devin Garlit moderator author
    6 days ago

    Thanks so much Marlene1105! So sorry to hear what you’ve been through. It’s especially hard when it’s family that don’t understand. You are most certainly not alone though, far from it.

  • Kokomom504
    7 days ago

    I am sorry to admit that I don’t believe people will understand.
    I look normal, but cannot do anything, even write.
    It sticks to have a invisible problem.

  • zeus73
    7 days ago

    As I read this, I’ve just hobbled (truly hobbled) in to an appointment with a physiatrist from the only parking spot I could find about 1/4 mile from the building. I’m wearing a large boot (the orthopedist type boot) on my left leg and my eyes aren’t focusing together today. So I’m having navigation troubles and terrain instability and I’m annoyed because I have to work so hard for everything all the time. Today I’m annoyed but not every day. Some days I roll with it and humor myself. Today I considered sitting down in the parking lot and crying but I knew I’d have a hard time getting back up. So I hobble on.

    Later today, when I get home, after resting and thinking of all the things I want to be doing instead of resting, I might wonder what I accomplished today. I paint, write for an online “magazine”, knit and sew. My finished projects and the progress I make on them are tangible records of what I do. The worst days are when I make no progress. Even worse are multiple days like this. I don’t want to recall the long walk across the parking lot or carrying a large basket of laundry down 3 flights. I try not to carry those struggles. I read your article and am reminded of the precarious tightwire I feel compelled to walk between what I live with and what I say out loud without shame. That too is exhausting and growing more so.

  • ShelbyComito moderator
    6 days ago

    Hi @zeus73, thank you for sharing a little bit about what you’re going through. I hear you, and I can only imagine how difficult it must be to “hobble on” some days. I think the tightwire metaphor you use captures this struggle so powerfully, and I know many here can relate to that feeling – which means you are not alone. I know an online community can only be there for you in so many ways, but please know that we’re here for you.

    Thinking of you, Shelby, MultipleSclerosis.net Team Member

  • zeus73
    6 days ago

    Thank you, Shelby, for your kindness. I wrote a long reply somehow connecting to an ild German restaurant in Baltimore and the aluminum foil sculptures they used to design on your leftovers packages. There was a connection but I accidentally deleted it before sending -a fortunate accident due to its verbose meandering. All I wanted to say was that I appreciate your note of support.

  • Devin Garlit moderator author
    6 days ago

    Thanks so much zeus73! “So I hobble on” sounds like a great descriptor of my life.

    Those days where I have no tangible evidence of productivity, of which, there are many, are especially hard. I know exactly how you feel!

  • lcal
    1 week ago

    Hi Devin
    Thank you for this! As stated from another person, I too will be using this to share with friends and family because obviously,”I couldnt have said it better myself”
    It often offends me that I know peoples perception of being home disabled is not as you’ve stated, a kid who stayed home from school sick. I actually had a friend mad at me for not talking on the phone and when I explained why she said, well, when your “done” and laying down that is the time to call ppl”.
    If fewer people took advantage of our civil disability rights then maybe the way ppl view being home disabled would change!
    I also wonder where has the time gone and what did I even do? I am really trying hard to work through feelings of my own embarrassment and disappointment of myself
    but at the same time I know things, have progressively changed and I need to find and accept a new “me” baseline.
    any suggestions you may have on this topic Devin, as It seems you’ve been in the same struggle, I would appreciate.
    how about a title of:
    WTF is this reality?? lol
    Lisa Cal

  • SnowCap
    6 days ago

    Aha, @lcal, being too fatigued to talk on the phone? Know this one well!

    It’s so hard to explain that sometimes the words just don’t come out right and it only makes you feel worse and more fatigued to try….

  • Devin Garlit moderator author
    1 week ago

    Thanks so much lcal, always appreciate you sharing your thoughts. I do wonder how many people actually take advantage of the disability system, given my own experience, as well as the many stories I hear, it’s not at all easy to get disability benefits. I do believe that people, unfortunately, think that it is much easier than it it, people think that there is a lot of abuse of the system. Does it happen? I’m sure it does, but I personally don’t think it’s as prevalent as some people think. I do think that there are too many people who, if they don’t see someone in an actual wheelchair, think that person is taking advantage of the system. I think that perspective on what disability looks like need to change.

  • lcal
    1 week ago

    i need to reply to my own comment
    what I meant to say is If fewer ppl who DO NOT NEED IT took advantage of our disability system then maybe the stereotype of being disabled is time off fun would go away

    I could not figure out how to edit
    lisa cal

  • messeeone
    2 weeks ago

    You did it again, Devin. You said what I’ve been wanting to say to friends and family: actively fighting this disease is my full-time job! Therefore, this will be shared with my FB group. Thank you again.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much messeeone! Very much appreciate that!

  • Qcat
    2 weeks ago

    I feel like I’ve turned into one of my cats. Sleep 16 hours a day. Spend at most 4 hours being entertaining and the rest of the time, desperately trying to stay awake.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you Qcat, I understand for sure. I like to think our 4 decent hours are better than most people’s whole day though! Much more appreciated anyway.

  • Janus
    2 weeks ago

    Devin,
    I never looked at it this way before but it’s like putting the last missing piece of a puzzle together. At physical therapy today, I could barely get through it. My legs were particularly weak, and it took all of my effort and concentration. I for one am so glad our moderators here take all the extra effort and time to put these articles out for all of us. They truly are life lines in more ways than one. Thank you!

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much Janus! I really appreciate you taking the time to say that!

  • sueaceuk
    2 weeks ago

    So true. I tend to protect most folk from the realities of my life with SPMS . Not through altruism but because I can’t face explaining it again and again and…

  • Devin Garlit moderator author
    2 weeks ago

    Thank you sueaceuk, I very much understand. Constantly having to explain to others is such and exhausting and heavy task.

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