Columns Make Change Happen - a Column by Paula Hardin The Cluttered Consequences of Multiple Sclerosis Fatigue The Cluttered Consequences of Multiple Sclerosis Fatigue by Patricia Silva, PhD | April 21, 2017 Share this article: Share article via email Copy article link Multiple sclerosis causes debilitating fatigue. The following photographs show, without censorship, what my fatigue leaves undone. The homes of everyone I know have living rooms without sweaters tossed over the back of chairs. Their floors are not an obstacle course. They do not have piles of mail, notes, drills, and partially opened packages cluttering every flat surface. My normal casual lifestyle deteriorated dramatically over the past several months due to severe fatigue. I get little bursts of energy that propel me to take action, but that barely makes a dent now. These photographs illustrate the consequences of my multiple sclerosis fatigue. SOFA VIEW. Jeans and a sweater that need mending cover the footstool. To do the mending, I must first move the sofa. My sewing desk is being used as an end table. (Seemed like a good idea at the time.) My cat likes paper bags. Don’t really need three. POTENTIAL OPEN SPACE I must repair broken table at back. The white column lamp sits where I finally finished assembling. The effort of vacuuming prevented me from putting it away. The once-clear table requires more mental effort to identify, sort, and then find a place to put its contents. Just looking at the photo makes me want to take a nap. DINING ROOM My dining room table (really, it is there). The empty bin on the chair actually represents success because it is EMPTY! Now I just have to decide where to put it, or maybe reuse it to eliminate some other clutter. COUNTER TOP The counter gets cleared once a week, only to repopulate shortly thereafter. The clock needed replacement batteries, but then I decided I wanted to hang it somewhere else, but haven’t decided where. This also requires finding a nail, my hammer, and ambition. The foreground shows a container of twinkle lights I bought for a photography project. That was after the 2015 Christmas when they were on sale. I don’t want to put them away because that would mean admitting defeat. KITCHEN TO LIVING ROOM The view from the kitchen to the living room. I bought cat food and supplements online, but MS fatigue prevents me from putting it away. It also would require bending over, rearranging things and lifting things. I just couldn’t do it. Other things are from a now randomly stuffed closet where I can’t find anything. DINING AREA FROM KITCHEN The kitchen, looking toward the dining table. The step ladder represents my efforts to fix my fluorescent light fixture in the kitchen since at least December 2016. First, this required I have the energy to go to the local hardware store and buy replacement bulbs. I had a friend come to help in case I fell from the ladder because of my balance problems. It was a struggle to get the bulbs out, but I managed while she held the ladder. She worried about breaking the bulbs. Then she got on the ladder to replace the bulbs. Lack of arm strength meant I couldn’t hold the bulbs. Severe double vision prevented me from seeing where to insert the bulb. The light fixture still doesn’t work. I intend to do something about it, eventually, so I do not want to put the ladder away yet. KITCHEN ISLAND The island from the living room. More cat food that I managed to get as far as the stool (used when I need to hand-wash dishes). My dishwasher broke last year. I had to buy a new dishwasher. I decided to get one with two drawers so that I could have one for clean dishes and one for dirty dishes. A friend recently suggested I do not leave any dishes in the sink, but rinse and put in dishwasher immediately. That was the plan. But somehow, by the time I get to the sink, I just can’t. I REALLY CAN’T find the energy to rinse and put the dishes in the dishwasher. I berate myself for being lazy, for not putting things away immediately. I blame myself for letting it progress to this state (as if I really have a choice). Multiple sclerosis fatigue is the real culprit. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Patricia Silva, PhD PatrÃcia holds a PhD in medical microbiology and infectious diseases from the Leiden University Medical Center, Netherlands, and completed a postdoctoral research fellowship at the Instituto de Medicina Molecular, Lisbon, Portugal. Her work in academia was mainly focused on molecular biology and the genetic traits of infectious agents such as viruses and parasites. PatrÃcia earned several travel awards to present her work at international scientific meetings. She is a published author of several peer-reviewed science articles. Tags fatigue Comments Wendy Well....that was depressing Reply When I read your comment I realized that you were right. I chose to focus on the negative consequences of fatigue. But really, there is a completely POSITIVE view of this consequence. A major contributor to the fatigue is the fact that I am actually choosing to DO OTHER things, positive things, things that are more important to me than picking up and putting away, um, anything. I shall do a follow up column about what positive things I am doing with my time, like being a really serious disability rights activist advocating for better transit options for our city redevelopment plans. Reply K Aubrey Thank you. The fatigue is hard to explain and you nailed it. Even the simpliest tasks can be overwhelming. Reply Lori THIS! You nailed it. Thank you so much for sharing. You made me feel so much better. Those pics could have been of my house. I cannot cannot cannot get ahead of it. Makes me so sad, and my children judge me so badly for my messy house it hurts. Lazy is a drumbeat in my head that just adds to the down feelings I fight. You made my day, thank you so very much! Reply Jennifer THIS is the EXACT replica of MY LIFE!!!!! Reply Marcie Schonborn Life on the MS side ?. I find myself reading this and saying wait give this to husband so he understands, but it takes to much to figure how to print it. I'm with you girl. But Warrior on... We will make it, tired, but make it ? Reply Chantelle Can't see any pictures . Reply Francis Jackson My mom used to be like this, she has COPD on top of her PPMS which doesn't help. Now she lives with me, she has someone to do the cleaning ? My mom suggests to take B Vitamin supplement​s to try and help with your fatigue. All the best Paula. Francis Jackson, UK. Reply Thank you for understanding. Thank your mom for the vitamin B tip. I just got a blood test that showed low vitamin B6 so I have been taking that. I also have in the past taken a "B50" supplement that has extra of all the B vitamins in one. I ran out and kept forgetting to buy more. Thank to your comment, it helped remind me so I put it on my phone reminder list! Reply Paulette Brown You could also try B6 injections-I go once a month and the energy increase is HUGE!(prescription from my family doctor then my pharmacist injects for me IM injections harder than my SC Copaxone) Reply Thanks, I will check with my doctor(s). I take the 3 x a week Copaxone too. Subcutaneous is not so bad, but boy, I did not care for the intramuscular! But whatever works! Everybody needs to be on some therapy; never ever wait! Reply Lisa Solgar Vit B complex liquid under tongue... very good to take and has helped with my MS and Fibromyalgia fatigue tremendously. Also helps with sleep. Just wish I could find a drug to give me the oomph I once had....and get me out of the safety of my house more...it's too safe here!!! and my lovely husband is going through he'll coaxing me to do stuff I was once so confident and adept at as a Teacher. God, I hate the word MS...it's a Demon. Reply Karen Junqueira My dearest MS counterpart. Your descriptions are so precise it makes me cry. How can anyone ever understand that it's too tiring to hang up your clothes, or cook a meal (which means planning it first...), or put anything you used back where it belongs, because you're simply too tired? No-one understands what you mean when you say you're too tired. Tiredness is something that goes away, isn't it? Nope, not for a person with MS. It starts early in the morning when you HAVE to get up (not want to), and continues right through the day until you can thankfully go to bed. Tomorrow's just the same. How can I explain??? Yes, it's hard, but I have to tell you there IS light at the end of the tunnel, or should I say strength at the end of the fatigue. I have been on a no-sugar, no-dairy, no-saturated fats diet for the past year and 4 months and it has done amazing things for my MS and specifically the fatigue. Perhaps you could try it. It was definitely worth it for me. Good luck and be strong (no pun intended) Karen Junqueira Reply Oksana Baranovskaya Hello. I also have MS. No sugar? Is that possible? I love dark chocolate, occasional sugar in almond creamer etc. I have heard of Terry Wahls diet and how successful it is for MS. It is similar to paleo but stricter. Reply Lisa I'm non-dairy, non-meat (the meat fats aren't good for MS, so the experts say....SWANK MS DIET...look it up Keep S'Myelin Lisa x Reply Mimi Not having a clean house is kind of a curse for me. I'm too tired to go out, but it's too messy to receive some family and friends. I'm ashamed, so your text is kind of a releave to me. THANKs! Reply Shame is what almost prevented me from the full visual admission of how bad it has gotten. But I decided that the "Leave it to Beaver" style of pearls and dresses and hairdos lifestyle with an impeccably clean house was always an illusion anyway. My mom and other people I know that keep, what to me is an excessively tidy house beyond my capacity on my best days before MS, did not have all the interests and activities that I have, like reading extensively, and photography. So really, in that sense, I am making a choice to do this column rather than wash the cat dish right now. And that's okay. It is more important to do interesting things than tedious things. Let's blame patriarchy for the shame and throw off the shackles! No more shame! Pride in getting out of bed! Reply Rhonda Loved the article, that's me, too! I teared up a little. Very glad you posted the pics, makes ne not feel so alone in the cluttered-ness of my life. Reply Cindy This is me, and i don't have MS. Although, i grew up with MS all around me (my Dad, aunt, and cousin all had/have it). Reply max Crying. Tears of so much, but bottom line- of joyful camaraderie. From a fellow ms'r- ur words and pics have helped me enormously in feeling not alone. Thankyou x Reply Thank you for your comment. You have given me the joy of camaraderie by saying so! I thought it really was just me! Reply Jennifer Alexander-Prugh Thank you for sharing the honest reality of MS fatigue issues. May is only a few days away & my house is still decorated for Christmas due to a MS fatigue flair. I'm too embarrassed to even open the door for UPS guy. I was diagnosed 7 years ago, my husband still just doesn't get how I can sleep on the sofa like a zombie & our house isn't perfectly clean & organized anymore, I can't wait to have him read this & hopefully understand this is just our new normal & it's very common with MS'ers. Reply Since I divorced after my MS diagnosis, you may not want to show him this comment. If the Christmas decorations are still up, well, he lives there too. He is physically fit I take it? My pet peeve against men who might otherwise deem themselves supportive but prove they don't "get it" is when they claim "I help with housework." Being a helper implies that the RESPONSIBILITY is on the wife and therefore the failure to pick up his dirty laundry or do the dishes of his own initiative remains the OBLIGATION of the wife. My ex actually did see the housework as a mutual obligation and did stuff without having to be "begged" to do so. Partly because I am and was a deeply committed feminist from (as I joke) when I was born. He was not sufficiently committed to deal with a partner who could not do 50/50 though. Reply Paula anderson Thank you, I don't feel that I'm the only one. I have great plans but no energy. I wish my family and friends could understand. Reply The plans I wish I could act on (but am not giving up, they are not time-sensitive) require a non-stop sequence of events so I have to be at the top of my energy and have no interruptions. However, I am going to return to my 10 things a day and break them down into components with even lower criteria to accomplish. Instead of washing the sheets and pillowcases, I may just do pillow cases at one go; the top sheet another time; the fitted sheet on my strongest day. Instead of simply using all of the cat food dishes in sequence and then using the dishwasher, I am going to use two, switching back and forth. One in use, one soaking in sink. When time to change, easier to clean by hand the soaked one and put the dirty one in the sink to soak for next round. Just because I have 6 dishes doesn't mean I have to use them all! I recommend taking any task and seeing how small of a step you can make when you feel up to it, and then walk away. The next time, try the next step. Like with my big project, it would be closer to being doable if I cleared one thing off the kitchen island everyday and then kept it that way, ready for when I might make the next step. It's worth a try I figure. It's already been years for some aspects so obviously to feel anxiety of time pressure at this point won't help. Reply Paulette Brown This article is awesome- will have my family and friends read it in the hopes they can better understand fatigue. I do things differently now-don't fold underwear neatly before putting away clean laundry- have better stuff to spend the energy on-sounds do dumb to non ms'rs but it is what I can do-all those little things just don't take priority anymore. Energy tank is on empty or near empty(running on fumes) so have to be careful where the energy is spent! Reply Thank you for your kind words. I am glad that so many people have responded so positively. I was really nervous about putting the pictures out there. Hope the family and friends get a bit better understanding of what MS fatigue is, so far beyond "being tired" that there is no comparison. Reply Karen As I am sitting here in tears feeling useless and low, it is nice to know that what I am going through is so very normal. Dx in 1999 but this year the fatigue is worse than it has ever been. Going to focus on whatI can do and not what is impossible. Reply I am so sorry you are experiencing this too. The clutter that bothers me the most is the "compound" kind: you need to replace a bulb, but you have to find the bulb or maybe buy some more, then and the ladder (unless you just leave it in the middle of a room like I have done!). Then decide to risk doing a ladder climb on my own or get a friend over who won't judge. In addition to my fluorescent light, I accidently hit the pulls for the overhead fan/light in the bedroom a few days ago. It really clanged. I cannot remember how I even did it, but apparently, that blew the bulbs because that light fixture isn't working now either. Thank goodness for camera phones with the flashlight button! Gold star to all of us who get out of bed. that makes one major accomplishment a day right off and no one but us will ever know how much that really takes to accomplish. Reply Susan Thank you, Paula! This is my life. I try to tell people that I can do ONE thing a day, be it a load of laundry, cleaning the bathroom, loading the dishwasher, grocery shopping, etc. That's my limit if I want to be able to do one thing the next day, too. Your house looks like my house. I have the Christmas lights, and Halloween and Easter front door decorations in a pile next to it. There are two ceiling fixtures that need new lightbulbs, and my house is in a constant state of clutter and disarray. Your story brought me comfort; sometimes I think it's only me. I do choose to do positive things like dinner with friends, crafting, painting, etc and have learned how to leave room for those things in my life, even if it means I won't be changing the bed today. I've had RRMS since 1991 and come from a long line of "pilers," so the state of my household comes as no surprise anyway. But misery loves company so I salute you for sharing the dirty little secret some of us try to keep. Reply Robyn OMG I am beyond relieved to know that my home is not the only one that looks like it does! Thank you, Paula, for your words and most especially your pictures - now I truly know that my life and lack of energy is shared by you. Your article points out another aspect of living with MS that is not attended to by insurance. Having a relatively neat and more importantly, clean, living space makes a huge difference in our stress levels and comfort having others around. Each day I get up with the hope of making a change - then the thoughts of what that involves makes me so tired that I can't even begin. I have no answers for the dilemma but can at least feel some comfort knowing that 'we' are not alone in this issue. Thank you! Reply Pam Martin You have described me exactly. It's such a relief to know I am not the only one who would rather die than let anyone see my messy house, and everything used to look so pretty. When? you ask. I don't remember, but I think it may have been this century or not. Reply Cyn Doyle Thank you !! I used to always feel like such a failure for not having a spotless house or having guests anymore....as I did before MS.But now my day is spent going to the hospital to spend a couple of hours with my husband who has dementia. He is my priority....and I no longer say ''excuse the mess'' if anyone comes to my front door. Unfortunately , there are still friends that don't get it. One of them has fibromyalgia ....and she figures that if she can do housework , even though she is ''tired'' , so can I . She thinks I am just lazy. Thank you for making me feel better. Reply Jacqui My house often looks like that. I am lucky in that my husband does help out and always has. He actually does all the laundry, cleans his own bathroom, all the vacuuming and does most of the dishes. He will try to cook but the poor man is hopeless on that. If I don't want raw or burnt food I have to fix it myself. What I have started doing for the clutter is every time I have to go let the dog outside (I have a service dog) I pick up one item and then on the way back to my office I put it away. This has made it manageable for me which is wonderful! Then on my good days, I try to work for 5 minutes on housecleaning 4 or 5 times a day. My home is slowing getting back under control. Reply Sandi ohhhhhhhhhhh perfect description!!! i have been trying to change my closets/dressers from winter to summer for at least...........3-4 YEARS now. i have gr8 intentions but clothes just get piled up. lost my job in '15 'cuz i had a nerve on my S1 disc that threw me to the ground when it got hit = so at least now i live mainly in jeans/sweats/pj's. i've been on this ms journey for 33+ years so i really don't know what kind of housekeeper i would have been w/o the disease:/ Reply Cynthia I look around my small house and it's just like yours, cat food included. I was left with crazy, insane, soul sucking fatigue after a December 2015 relapse. I have been in complete denial about the whole thing. Always thinking it will pass, I'm just having a bad patch, if I just try harder or do this or that I will be able to manage better. I have within the last two weeks, come out of that blissful fog of denial and realized what a confusing mess I live in. I have thrown everything in my life overboard to keep the job afloat. I love my job, so the sacrifice is worth it. I hadn't realized that I had some shame with it all. Your post has helped my put aside that shame and ask for some help. I have MS. The fatigue is real. I'm not lazy, etc. I'm very grateful for your post. I almost wept when I read it. Yes, that's me too. This is what my MS looks like. Thank you!!! Reply Oksana Baranovskaya This is my life: I go to bed tired and wake up tired. Being a type A, everything has to be just so, I do feel a sense of shame/ embarrassment that my house is not 100%tidy and I do not even have kids to make all the mess. Not a lot of people / friends know of my diagnosis so my house probably just looks messy, scattered etc. Well, technically I have energy for the first half a day. Then I need to take a nap to recharge me. Sometimes coffee helps, gives me a push. I work for half a day, then go home. Reply Dee So depressed because my house is beyond "messy" and rapidly approaching "dirty". Husband is furious that the vacuum hose is never put away (because I'm never "finished" vacuuming) but never thinks to ask what he can do to help. Clutter just piles up everywhere and any time I make a concerted effort to sort through it a put it away - just finishes with several smaller piles of clutter - I mean, I could literally throw it all out and not even miss it, so why don't I ?? Embarrassed to have people over (friends know NEVER to drop in without calling first) - to the house we built so I COULD be proud of my home and have people to visit ... And answering the door to the parcel delivery guy in my pyjama's - every ... single ... time ... I appreciate this article, because I seriously thought I was the only one who lived like this - and I hate every moment of it! Reply Mary This article hit me hard, but I am so glad to read what all of you experience for I experience this as well. Nothing like the feeling of guilt while I lay down with fatigue and my husband goes to work just so I can have health insurance and he hates his job of 19 years. I seem to be in the resting mode more than on my feet mode. I am tired of being tired. The things that I can do, I do. I wash one to two loads of clothes a day. I try to get the dishes done at least once a day. Everything else, just doesn't get done. Once in a blue moon, I may have an energy spurt, usually at night, and mop my kitchen floor or sweep or vacuum. I just piddle around when I am on my feet. Christmas will be here in just over a month and have so many projects that my mind is overwhelmed of where to start. I haven't finished a good book in years. I am there with all of you. My home is filled to the brink with my family; husband, 3 adult children, twin grand-toddlers, a 5 yr. old grand daughter and once in a while, another toddler when she comes to see her daddy. Oh, did I mention 3 dogs and 3 cats? On an encouraging note, today the sun is shining!! Reply Cheri Smith thank you so much for sharing. I am going to make copies of it and give to all my friends who have made this statement. " I must have MS also, because I get tired a lot too. Reply Robyn I just found your post - THANK YOU so very much for sharing actual photographs! My home looks just like yours and I am so ashamed of the state it's in. Your post has allowed me to forgive myself (again) for living as I am due to fatigue and cog fog. Almost every day I vow to make something neat once again, only to become exhausted at the thought or to start working. I do start working! I too have "projects" that I want to do - artist home adventures. The supplies are there and out to try to make me start, yet I haven't yet. I've sorted paperwork only to have created yet more piles that require filing. You all get the picture. I live alone. My family just won't "get" anything MS, yet I persevere! I am still hopeful that if you happen to drive down my street there will be some random yard art that I finished! ;) Reply Debbie Even though an old post, after reading thru many forums it's the best detailed for what I too face daily. As many here, I'm desperate for direction in tackling issue of not being able to complete tasks. Plus, I own a small business located outside my home with same challenges but recently hired someone to maintain store. My doctor said best therapy is to keep working and when necessary be honest with customers on bad days. As I read thru article and comments, focus is on physical fatigue, which I do experience but feel my inability to complete tasks is somehow mental. My doctor added medication to help me focus but doesn't consistently work. Diagnosed just last year after nearly 10 years being bounced from specialist to specialist so I'm still learning. This issue has become my worst symptom, I can almost tolerate pain, vision, and weakness in body but when I know in my mind how to do a task but can't physically complete it that wears me down mentally. Of course, I become stressed, start wondering if I'm loosing my mind and it's all mental, which flares my other MS systems. I've read MS can present differently in each person, may be the case here. Hope no one takes offense to my post. I'm certainly not questioning anyone's symptoms, guess I'm eager to find someone else like me. I've tried to read all the comments, may have missed something related to mental/cognitive issues in completing tasks but if you're like me would appreciate hearing your story. Reply Jean My house usually looks like these pictures, too. I think my fatigue is physical and mental. I’ve had neuropsychological testing twice and I’m getting tested again. I have short-term memory problems. I have trouble remembering where I put anything. I found out my visual recall is very poor. I have excellent auditory recall! I did go to a speech therapist but probably not long enough. They do neurocognitive therapy also. Maybe you could ask about testing and therapy. Reply RADPDX I'm posting this comment in an old thread in the hopes that some of you have email notifications to alert you of any new answers here. I was diagnosed with PRMS in June of 2019, after having gone undiagnosed with MS for nearly 25 years. Needless to say my fatigue has been completely debilitating and my house looks even worse than the pictures shown here! But I have some good news. My neurologist prescribed me, of all things, Ritalin. He has me on a once-a-day extended-release dose and 3 5mg doses throughout the day as needed. I started it two days ago, and I have already gotten more little tasks done in this time than I have in the last 6 months. So I highly recommend anybody who sees this, ask your MS doctor to go on a trial run of Ritalin and see how it works for you. It might be a game-changer. Take care out there, everybody. Reply Liz A. Thank you so very much for this post, especially the photos. I do not have MS, but I do have chronic fatigue, fibromyalgia, and other issues. My house has gotten to the state where I have been feeling so incredibly embarrassed about it that I no longer have people over. You made me feel so much better just by sharing your story. Thanks again and good luck. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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