Welcome to Our World

By Devin Garlit

3 min read

At the outset of this current pandemic we are now in because of the coronavirus, I was loath to write anything that might involve mentioning it. After all, there is SO much out there about the illness, the precautions you need to take, and so on. However, as more and more people are forced to hunker down at home and not leave their house, I can’t help but want to say to them “welcome to my world”. As someone who is both disabled because of multiple sclerosis and immunocompromised because of my treatment, isolation and fear of germs are something I live with every day. This is really something meant for friends and family to read more than those who have MS.

An isolated life

While it’s not the same for everyone who has MS, my particular situation leaves me stuck at home for long periods of time. If I’m lucky, I’ll get out of my house for a few hours once a week. I’m a 42-year-old single man and this is what my life has become because of this disease. Forced from my career, I now sit at home with little to do. Granted, I’m not just casually sitting all of the time: for a big chunk of it, I’m laying down and not feeling well. Sometimes, I’m not even really sure where the time goes because of this.

Getting out of the house comes at a cost

Point is, it’s not that I’m simply sitting home and bored out of my mind. Nope, I’m sitting home, bored out of mind, and feeling physically awful. Some weeks are better than others, where I’ll maybe make it out of the house twice, which is great, but it comes at a price. Getting out and being active always comes with a cost, that of the dreaded “MS Tax”. I’ve now spent years like this, rarely getting out of the house because of my illness and the abilities that it has taken from me.

Germ warfare

Those moments that I do get out and am among people, I need to always be cautious of my surroundings. My medication has a dramatic effect on my immune system. Many MS medications work by trying to suppress or alter our immune system. Our immune system, that part of our body that is supposed to protect us from illness, is actually what is trying to kill us. Because of MS, it’s confused and thinks parts of our nervous system are foreign invaders that must be destroyed.

Simple illnesses are huge issues for me

What all that means is that the simplest of illnesses become massive issues that our body can’t fight off. I spent all of January in bed because of this; I had been around someone and caught a bug that they likely never even noticed because their immune system was swift to rid them of it. It left me in bed with a fever way over 100 for three and a half weeks; it is not a stretch to say that it nearly killed me. The current pandemic has caused folks to really notice if someone near them coughs or sneezes, that’s a way of life for people like me.

Money

It’s pretty interesting to me to see so many people that can suddenly no longer work now becoming concerned with the system and getting help for their financial woes. After all, this is exactly what the disabled have to deal with every day. Social Security Disability isn’t really enough to live on - it’s just not. My own current situation is extremely precarious and I feel like every month could be my last, not even because of my physical ailments, but because of my inability to survive in this world on such a very low income. If my current housing situation changes, if my roommate gets married, that’s pretty much the end of me. I didn’t ask to be in this situation, I worked hard all of my life, paid taxes all of my life, but this is where I’m at and have been for a while.

Keep in mind

So, when I see people suddenly worried about money, or complaining that they are stuck inside, or panic buying hand sanitizer because they are afraid of germs, well, I can’t help but think: welcome to my world. There is a big difference between my situation and theirs, though. Eventually, most people will be able to leave their houses whenever they want. They won’t need to fear catching something that could kill them, and they'll be able to earn money again. When they reenter society and get all those things back, people like me will still be home, still struggling just to exist.

Thanks so much for reading and as always, feel free to share!

Devin

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lily Member
So very true! This is meant for those that don't have MS, but I've found others just don't get it. Even with this current situation, as you say, they will be experiencing similarities, but, I'm sure, they are trying to survive until this thing blows over. They don't understand that MS is chronic. Most don't even know what chronic means. As I've said in the past, "I can explain it to you, but I can't make you understand it." Take care and be well.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4036718" username="lily"/> !
2. debsie97 Member
 You know what I am pissed off to. They have the aww poor lil me attitude. Where were they when we needed a friend or at least someone to talk to. My husband makes me mad especially when I fall or get food on the ground. He asked the other day when I got chocolate icing on the floor if I was done because now he has to shampoo the carpets and by now I was fuming and I told him I was not done. I planned to decorate all the carpet with chocolate icing and I need to find another color to throw on the walls since um no one is coming to visit you really need to complain. Grr
Janus Galante Moderator
Devin, thanks as always for the new article. Only 3 words: I get it.
lcal Member
Hi Devin Thank you for putting into words what the majority of us have got to be thinking. After the first week of national isolation and peoples reaction to their personal world changing I had a personal feeling of embarrassment and a lil despair because I was forced to realize my daily reality. That reality is that my life was not changing, and that just felt sad to say the least. so again Devin, thank you for allowing me to finally get this off my mind and more importantly I am happy that you unloaded it from your mind. your writing provides a great service for us and you are very deserving let it out take care Lisa
1. lcal Member
 How I’m feeling today honestly is pissed off! Angry that while ppl are whining about isolation I’m going out to the MS center tomorrow, in an infected city, feeling like xtra crap from the Lyme disease I contracted and diagnosed with last week from being in my back yard with my dog, with my cane and obviously with a deer tick so I can begin my Ocrevus After being on tysabri 15 yrs. I do not have a choice Because the dr feels if I get coronavirus my chance of recovery is much better than recovery from ms rebounding having now been off tysabri 10 weeks and a PML risk of 1/125!!!!! For me this stuff is part of my life and I just told with it, until I think of the things ppl are whining about, then I get pissed off!!!!!!!!!!!!! Lisa
2. Devin Garlit Moderator
 I certainly understand the anger <inline-mention user-id="4016309" username="lcal"/> , good luck with the Ocrevus, venturing out to get it is no doubt the best decision.
booker Member
As Devin always articulates so effectively, it's so hard for others to understand what we deal with day after day. I had to "retire" a few months ago from university teaching. Some have thought that it must be nice to "retire"!! This place is a good one for venting about our situations and to express these thoughts that it's natural for use to have, now they see what it's like for us... But, we should also try not to lose our empathy Many have just unexpectedly lost their jobs or income, and facing mortgage payments, food payments for their families, worried about their health and their loved ones health, having the abrupt end to routines and relationships that keep them sane. And they don't know when it will end. Most of us have faced our challenges for some time and now we may not remember what it felt like at first to suffer these losses and to enter the unknown. Sure, many of those dealing with corona impacts will regain their old life, while we won't. But, we also shouldn't trivialize their sufferings and the psychological impacts they face.
cheyennejourney Member
Thank you Devin for saying so eloquently what many of us are feeling.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4080790" username="cheyennejourney"/> , appreciate you taking the time to say that!
epps4927 Member
I felt like for first few years until a I found great psychiatric and antidepressant. Now I keep myself busy with things I find joy in. These are small projects and inexpensive. Just think about what is right for you.
marigoldg Member
This is a common theme among the multiple MS groups I belong to and write for. Many of us live a life that already includes "social distancing" and are highly aware of the potential for infection when we venture out of our safe home space. I hope that the experience of being forced to stay at home and find ways to occupy themselves provides an opportunity for understanding what life is like for those of us who live under this constraint daily. I have had a few conversations with friends who suddenly are asking me, "what do you do with yourself all day, how do you manage to not lose your mind with boredom?" I offer suggestions, but I also often suggest they might take this as an opportunity to appreciate the quiet and find a way of being comfortable without being busy busy busy all the time. I have had so many people and even been sent surveys asking how the virus is impacting how I live my life and how I'm coping. Truthfully, in terms of *how* I live my life, there's pretty much zero impact. The biggest negative impact has been that I'm using more delivery services for groceries and other items. In terms of coping, I'm not really doing much of anything differently, except talking more often to friends who are not in their offices during the day. My hope is that all of us gain some appreciation for the importance of connecting with each other and appreciating what we have in each moment of the day. My hope is that we learn to be prepared for the unexpected and that emotional flexibility is an important life skill. My hope is that we find compassion for our fellow humans and offer support to each other in whatever ways we can.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4041606" username="marigoldg"/> , I share the same hopes. Ideally, when this is all over, those that have had to experience this life will remember what the experience has taught them.
mom2blukat Member
Hi Devin. I have to finally respond, after s
jackiemack Member
I completely agree. I was texting a friend who was checking on me. I wasn't flip I replied I'm fine I don't have personally much of a difference from before. Of course I am concerned about others and their families. Coronavirus is absolutely a horrible plague on the world. I too am relatively homebound. Getting outside is extremely <a href='http://difficult.Yes' target='_blank' rel='noopener noreferrer ugc'>difficult.Yes</a> as this virus painfully and slowly leaves many MS victims will still be home. I found it almost insulting when the media reported people at home attempting to prevent the spread will suffer depression. Really?! Of course. Plus depression is more difficult to combat for MSers because we won't be able to return to a pre-condition normal.
1. Devin Garlit Moderator
 Thank you @Azjackie, one of the things that has really shocked me, is how people are already having difficulties, media is already warning about depression, all so quickly. While many of us have been living years like this.
elizabeths Member
Devin, You have never written anything that I haven't said "That's what I thought!" about. No exaggeration. This is no exception. I share your worries. Although I wouldn't wish this on anyone, I hope that it lends itself to a greater understanding. One of the differences is that we don't have people we love dying all around us. Seeing the mass grave they dug in New York was sobering. But I understand your individual points. The money thing... I now get the same amount from Social Security that I made in my first job 30 years ago! So much for having 2 Bachelor's degrees and a Master's degree... Fortunately, my roommate is my best friend of 35 years and she's not going anywhere. But I hate the financial dependency. No matter how much we plan for my security, I never really feel secure. As for going out...I have social anxiety as well as the difficulties of MS. I've gone from someone who never stayed home to someone who never goes out. My friends don't even try anymore. I miss them. I'm not sure what the answer is, but I hope this pandemic opens minds. Thanks for what you wrote.
1. Devin Garlit Moderator
 Thank so much for taking the time to share that <inline-mention user-id="3985428" username="elizabeths"/> , I very much appreciate that!
mom2blukat Member
Let's try again. I just slipped with my crazy poor grip, & was trying to thank Devin again for his wonderfully written comments, as usual. I have been reading this comment page for years, but usually don't respond. It gets difficult some days. You have such a great grasp of our issues & can put them into written words so articulately. I am very grateful some days when I view your essays because I can have people in my life read your words & hope they can finally 'get' what I end up trying to explain about my ongoing daily issues. And, that I'm not alone. Being able to do that has been a great help. I have had MS for 50 years. Yes, fifty. Was properly diagnosed in 1969. No MRI or high tech available. It was a lengthy ordeal. Done with every & any available, medieval testing. A wonder that all the involved stressful 'torture' didn't aggravate my symptoms further. I will be 73 yrs old later this year. Have gone from being initially diagnosed with PPMS to finally, in this century, of having RRMS. Been in & out of relapses & remissions. Have been on experimental meds that seemed to alternately worsen my situation, then put me into literally years of remission. (And, did I make up for lost time at the point!) But, that last remission was about 16 years ago, and with age & other comorbid health issues - this isn't an easy body to maintain. Other immuno-compromised issues are constantly the extra baggage I also battle on a daily basis. I haven't always had the good medical help I have at present. Spent my first two to three years in & out of hospitals. Including the VA, since I am a veteran(USAF - Vietnam Era) & over the decades, many other facilities. I was initially given a very poor prognosis. Imagine being told at the age of 22, that you only have two, at best three, years to live. My initial symptoms were so bad, after doing almost four years in military....that I went from going blind in one eye(part of the optical neuritis) as well as one entire side going numb & unable to properly stand to being stuck in bed or a wheelchair. Being told there was not much more that could be done at such a young age. The depression became almost unbearable. As did all the resulting experimental meds & procedures. However, after I got past my initial poor prognosis 'date of termination' - I became very determined to prove everyone wrong. And here I am - so far. But, I have outlived many others in my life - friends & family. Even doctors. I now have a few very select friends left. My family has gone, too. But...since I have been in an unstable relapse - I battle on. My medical care team for the past several years has been excellent. Thank goodness. And, I have had access to the best methods of tracking & maintaining my MS, as well as many other health issues. I do well with a cane - for time being, as far as getting about & am able to be fairly independent - so far. But, every year, there's always a new hurdle for me to overcome or battle. And, that nasty fatigue worsens each time. It has never really left me...even in remissions. But, I have learned how to somehow work around or thru it. I wholeheartedly agree with Devin, and the others on here who commented about this latest pandemic issue - yes, welcome to our world to all who have been made to join - albeit, temporarily. Everyone has their perspective about what they're going thru from this 'new' way of life. The way that we, as immune-compromised folks, have been unfortunately - forced into living with as a matter of our 'normal' daily routine, regardless if we're newly diagnosed or an old hand at this 'rodeo'. I do understand the panic & hysteria others, not in our situations, are feeling. After all, most of us had to endure similar initial feelings - but with a dimmer light at the end of our tunnels. So, I also get pretty upset with some of those folks & their ongoing dramas & childish reactions. I so want them to tell them to try living like many of us have to do, knowing that we won't be 'out' of our situations sooner than later, along with many other disabled, vulnerable people. That we have to continue on further in the same manner they have only had to endure for less than a couple months. So, I have been very uplifted by reading the input on this site from several strong individuals. Those with MS are pretty darn awesome - in my opinion. Even on the days we don't or can't see it. It's a great help during tougher days - even for this battle-scarred old lady. And, Devin, keep up the great writing. Someone should send you an award or degree for your abilities! I hope you get recognized for being such a helpful "therapist" to many of your faithful readers. I look forward to seeing each insightful essay. I hope all of your readers pull thru this latest life snafu to the best of their abilities. Best wishes to all. And, never give up or give in to this disease, or any others. Do your best however you can.
1. Devin Garlit Moderator
 Thank you SO much <inline-mention user-id="4022080" username="mom2blukat"/> , I can't properly express how thankful I am that you took the time to comment (and trust me, I'm very aware how difficult it can be), it certainly means a lot to me.
2. Janus Galante Moderator
 Dear mom2blukat, I want to thank you first of all for serving our country. That means so much, and your articulate story was inspiring to say the least! I am so very glad to hear that you have had an excellent medical care team to help you as well. I know that you struggle with many of the symptoms of m.s. including the fatigue,(which I know can be devastating!) but if you should ever feel up to it, won't you please consider posting your story in our "Share your story" section where it could reach and encourage more of the community? Here is a link for easy reference should you ever decide you would want to.... <a href='https://multiplesclerosis.net/stories/' target='_blank'>https://multiplesclerosis.net/stories/</a> Thanks so much once again for sharing these very meaningful and encouraging insights! Janus
aliciawilson21 Member
I to am in your special situation
aliciawilson21 Member
Sorry my finger hit the keyboard to fast i have tremors but I was just saying that Devin's words were exactly my life every day for years and they were so beautifully spoken. I feel your angst. Like I said I'm in your same exact situation. I struggle every day with my health and month to month with money issues. - Your My Guru
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="3941150" username="aliciawilson21"/> , I appreciate that, and I definitely have similar issues with tremors!
Lisasnyc Member
As always Devin, well spoken. We appreciate your ability to put on paper what many of us are going through and thinking. Especially to those who may happen to see us seated at a function( one it took effort to attend) and not believe we are disabled. The “you don’t look disabled” crew, because you can actually sit up straight or stand (with an assistive device) - they don’t think we “really” are disabled. I don’t minimize the panic that Covid 19 is causing, but pull up your big boy/girl pants and deal with it. Like we have learned to deal with our MS everyday!!! Whew, nice to get that out. Take care everyone and remain safe, Lisa
1. Devin Garlit Moderator
 Thanks so much @Lisasnyc!
baggie58 Member
I was rushing to comment even before I’d finished reading your article. This is exactly how I feel. I’m fed up with seeing news items and social media posts about how people are fighting boredom since being forced to stay at him. Actually I’m beyond fed up, I’m really angry. Very few of these people will have ever have given a second thought to what disabled people who can’t go out do with themselves all day. My own husband, forced to work from home, initially kept worrying that I was ok if I stayed overlong in bed. What he didn’t realise was that to do ‘normal’ things with him on his days off I had to have almost complete bed rest for the remainder of the time, either through MS Tax (I love that phrase!) or to gain enough energy to go out with him. I still have to rest in bed all morning in order to be get up in the afternoons and interact with him. He is a good kind man, and tries his best, but I can feel him thinking ‘a bit long for a lie in! Grr’ from the living room as I lie here trying to wake up. So quite frankly I am so over the ‘crazy ways people are finding to fill their time!’ I don’t want to look at communal choirs, virtual cocktail parties, virtual exercising and the hundreds of viral boredom memes flitting through my news streams. And then, I don’t like saying any of this to able bodied people in case they think it’s just sour grapes. Thank you so much for this, lovely to see that someone else feels the same way as me (comments, too). Stay safe x
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4066525" username="baggie58"/> ! It really is incredibly frustrating!
motivation Member
This is so true in every aspect you look at it.
1. Devin Garlit Moderator
 Thanks so much @inspiration!

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