What’s so bad about a little fatigue?
“I am sick and tired of being sick and tired….”
I didn’t write the quote above. Nor did I credit it to anyone as I am not sure who to credit it to. I have heard it so much and seen it so often I think it could be attributed to hundreds, no thousands of folks, especially if those folks have multiple sclerosis.
(To the real, original quote author, we MS’ers are taking over your quote; we’ve earned it. Perhaps you should go take a nap.)
Here are some other quotes about fatigue that I find interesting and can credit to its authors. At least, I think I can.
“Sometimes it takes me more than 8 hours to get nothing done.” Snarkecards
“Going out with other adults is 90% explaining to each other how tired everyone is.” Also Snarkecards
“We’re all tired. Yesterday my pee was so tired I had to wake it up with a shot of whiskey before it would come out.” Alan Bates in the movie The Rose
Ok, the last quote has nothing to do with MS fatigue; unless Bette Midler’s character in The Rose had MS. She certainly had a suitcase full of drugs to rival that of most of the MS’ers I know.
A recent poll of my fellow MS’ers on a Facebook page asked what we missed most about our Pre-MS life. Many said energy.
The National MS Society’s webpage estimates that 2.3 million people have multiple sclerosis. They also estimate that number is low. And they estimated that 80% of those people are dealing with chronic fatigue as a result of their MS.
What does that really mean?
It means there are a ton of exceptionally tired people existing on the planet.
And the brainiacs say the zombie apocalypse isn’t real!
Did you know that the word ‘collapse’ is a synonym of the word ‘fatigue?’ I forgot where I found that but I swear, I did see it somewhere. Here are some other synonyms of ‘fatigue’- weariness, lethargy, and washed out, just to name a few of my favorites.
The Free Dictionary by Farlex defines fatigue as “the weakening or failure of a material resulting from prolonged stress.” For MS’ers, we are that material.
The point of this particular blog post is for me to show an example of what MS fatigue looks like in my world.
“I’m so tired just the thought of brushing my teeth makes me want to start sobbing.” Yvonne deSousa
I wrote that one. I really did.
“The fatigue is like the fatigue and over all body aches you get when you have the flu, multiplied by 1000.” Me I wrote that one too.
Recently I was trying to explain to my mom the difficulty of consuming a wholesome, healthy snack, an apple. What could be better for you than an apple? Of course, the first thing you have to do is wash it carefully due to all the pesticides that are used now. Then you eat it. It should be that simple.
But for me, it’s not.
Every time I bite an apple, I take a huge bite out of the inside of my cheek; no longer healthy unless juice from the apple dissolving into an open, bloody wound is nutritious. So I bought an apple corer figuring that breaking the apple into smaller pieces might save me from myself. Except the apple corer was hard for my already weak hands to maneuver and to find the strength to cut through the apple completely.
My mom suggested that I peel the apple first. This involves my super tired hands grabbing a sharp instrument to peel away the healthy apple skin before then coring the apple. Suddenly an easy snack has used up the energy it would take for most people to prepare a four course dinner and all I want to do is rest.
And the apple itself is now chunks of something brown and rotten as all of this took so long for me to accomplish that the apple has given up hope and become tired too.
Many people without MS say why don’t you get enough sleep?
The irony is that sleeping or not sleeping has absolutely no bearing on this type of fatigue.
Other people may ask, “what’s the big deal about fatigue? Lots of people are tired and they just have to deal with it.”
And so do MS’ers, but it’s not always pretty.
Every year my church holds a special mass for fishermen to celebrate our fishing heritage and to pray for safety and good fortune. I love this mass and it’s my favorite of the year- even more so than Christmas or Easter. The church fills up, and yes, even more so than Christmas or Easter.
The altar is decorated and the Bishop of our diocese, or some other mucky muck on his behalf, celebrates the service. My friend and I carry the gifts to the altar.
For non-Catholics the gifts are the unconsecrated bread and wine, not a box from Tiffany’s or an ipad.
This year I tried to balance as well as possible but the mass follows lots of other celebrating and those celebrations took place among the extreme heat and humidity of early summer. I went to bed early and did my best to rest up. It was very important to be non-fatigued since when MS makes you fatigued, everything else ratchets up considerably; your weakness, your clumsiness, your cognitive difficulties, your balance issues, your poor vision, etc.
Whatever MS makes difficult for you, it makes even more difficult if you have even the slightest bit of fatigue. This was worrisome as far be it from me to drop the soon to be blood of Christ on the altar before I am able to hand it off to the priest.
If he drops it, well then that’s his problem.
I pulled into the lot of my church and was rudely greeted by a fellow parishioner instructing me where to park. I was not able to park in the spot he recommended (long story,) and politely tried to explain this to him.
Seems he took his parking duties way too seriously and began to argue. This caught the attention of another parishioner and a small scene ensued and my sensitive feathers got ruffled.
Had this situation happened before MS I would have,
- Taken the high road by ignoring the parking dictator and felt lousy about it at the time but better for it later
Or,
2. Used some non-Christian language to humiliate him immensely, causing me to feel great at the time but lousy later.
What my MS fatigue caused me to do instead was cry.
Yes, an embarrassing, inappropriate, obnoxious, ugly cry.
I tried to get to the bathroom to pull myself together but there was a long line. I tried to turn away from people to pull myself together but people saw me anyway. The more people asked me what was wrong, the harder I cried. When, through my sobs, I could only say that the problem was a minor parking dispute and not the end of the world as we knew it or a zombie apocalypse, they backed away.
I’m sure they were thinking ‘drama queen,’ ‘cry baby,’ and ‘lousy make up job’ as my mascara was now all over my face.
If I had my way I WOULD NOT have had a breakdown during my favorite religious event of the year.
It was not my choice to lose it over something completely minor in the grand scheme of life with or without multiple sclerosis. I could neither predict the breakdown nor could I blame multiple sclerosis directly for it.
I COULD blame the parking guy.
But I am supposed to be working on forgiveness, peace, love and all that other better human, better spirit stuff.
I can however, blame multiple sclerosis fatigue for making everything about my mind, body and psyche weak, for taking over all control of my senses, for once again doing what it was going to do despite all my best efforts to stop it.
And of course, there’s no way to explain this to everyone who saw my breakdown, that it was really MS fatigue’s fault, unless I happen to put it in a blog post….
That is the ugly truth of MS and the horrible fatigue that comes with it. It is frustrating, uncontrollable and, yes, let’s face it, ugly.
Luckily for me, the visiting priestly mucky muck gave a funny homily and humor always cheers me up.
And God is good; as weak as I was I didn’t drop the altar gifts.
With the makeup fail caused by tears I did look like a zombie but hey, God loves us all right?
I choose to believe that includes zombies…
Bless you, Yvonne…another great blog post! I relate to you 100%. The fatigue I have from MS & Fibro, along with the cognitive changes I’ve had, is what made me realize I had to retire from nursing in 2010. I had been in nursing management, of some sort, for about 15 years. I was not willing to take a chance of misdirecting my staff about anything, especially anything directly involving a patient. I was having profound trouble doing tasks that in the past had been a breeze…similar to your book that describes the new software program! The fatigue was so bad I would literally almost crawl into the house & have to nap before I could even cook dinner…then it was often dozing in my recliner all evening until bed time & then get up & do it again. I look back on that time & wonder how I possibly made it as long as I did. I know it was the grace of GOD that it was possible.
Amen to the Grace of God helping us through! I am 150% sure that He gave me my sense of humor to help me cope. I can totally relate to the fatigue you mention. Here’s another one I hear a lot and have myself- do you need to rest after taking a shower? Showers used to pep me up for the day. Now I dread them- they just make me want to go back to bed!
Everytime I read your blog I am more awed by how strong you are. If it makes you feel any better if I had been there and saw you crying I very likely would have started screaming at the parking person and seeing as it was at the church would really really try to to swear.
This made me laugh out loud!!! I know you would have done it too friend!!
Yvonne, I just love this post! In French, we don’t even have the word “fatigue” at our disposal. In French, “fatigue” is just the word to express tiredness. Meaning every single person around me keep saying they are also “fatigué”. The Doctor I was seeing before I was diagnosed would tell me exactly the same each time I would go and complain because I was “fatiguée” and depressed. He would just tell me that everybody was “fatigué” because it was winter, because it was fall, because it was hot, because… because… because…
“Tired of being fatigued” indeed.
That’s even more frustrating Francoise! Although, I’m not sure that too many doctors here get it either. Sorry that you can relate but I love your comment and support! Hope you are not too fatigued today….
Man, that’s frustrating. It’s bad enough when friends minimize the problems with MS by trying to “empathize”, saying things like, “I know what you mean. I get so weak sometimes, too.” …or… “Yeah, getting old stinks.” But when a doctor does it! That’s inexcusable. That kind of doctor should be banned from practicing, made to give himself shots everyday, and… and… uhhhhh… and… mnmunmm… zzzzzzzzzzzzzzzzzzzzzzz.
Would be nice wouldn’t it? Luckily I have an awesome neurologist now who does get it but I have seen and heard some crazy examples..
I sure can relate to your post. I hear myself whimper and cry (softly or sobs) more as time goes on. The more tired or fatigued I am, the more fragile I become. You recovered well and didn’t let circumstances ruin a special thing!
Thank you so much Kerri. I like how you used the word fragile- that’s a great descriptive word for when the fatigue just beats and beats us… I hope you are not feeling that today and my best to you for a great weekend!
Yvonne. You have been on my mind so much lately as the humidity has been so oppressive. I am glad the weather has eased up, and the air seems easier. I hope it is for you. This week’s blog, was, as per your usual, mixed with truth, humor and hard stuff to read about someone I have come to care so much about. Thank God for your humor. Have a great weekend!
Thank you so much Nancy! Last week was a little brutal but I am thrilled that I have ac this summer. And making fun of the stuff that frustrates me sure helps too! I really appreciate your comments dear friend!!
Well done, my friend. I still remember the fisherman’s Mass you brought me to several years ago. It was very beautiful, very special, and certainly memorable.
Thank you dear friend! It was even beautiful through all the tears!
Yeah I know I would have too, it is so funny I don’t stand up for myself as much as I should but if someone messes with my family or friends i am like XENA warrior princess
Xena Warrior Princess- I can totally see that!!! Too funny!
Wow, am I ever glad to have been introduced to this blog recently! Finally, some people who understand. I really get the shower tiredness. Getting and shower and getting dressed is like running a marathan some days.
Emotions really do me in! I think I’ve learned I’m not doomed if I express my anger. I used to really care that everyone was happy with me and now I’m a little more free expressing myself.
On the morning of my Dad’s funeral, I just collapsed in the shower. Didn’t hurt myself but had a horrible time getting out and up. I was like a beached manatee and I swore at my legs, saw how filthy my bathroom floor was, but got out a lot of frustration, sorrow, and had a good laugh with my husband how ridiculous everything seemed. Oh, the joys of MS!
I’m so glad you found my blog as well Audrey!! I’ve discovered that the more exhausted I am the more I am going to do something like fall in my shower- both terrifying and annoying. But like you, while I tried to figure out how to get up, I too would stare at the floor and notice spots I needed to clean! Before you know it, I have a list in my head- fill bucket, find sponge, spray tiles, get up…..
When I read that first line “I’m so sick and tired of being sick and tired” I burst into tears. I’m 31 y/o and I’ve been seeking a diagnosis for 12 years. My symptoms the past few months are making me wonder if it could be MS. I know no one can diagnose online but I’m wondering if anyone has had these same symptoms. 12 years ago the bouts of nausea started, lasted a few months at a time, a few times a year. Last July I started with the more concerning issues- tingling in my fingers for a few days at a time, its now started in my feet. I’m getting increasingly clumsy, often dropping things and occasionally losing balance. The past few weeks I started have sharp shooting pains that causes violent spasms, it’s happened in my hips/thighs the most and recently in my hand & side of my abdomen. These pains and spasms are really concerning me, I’m scheduled to see a neuro next week but in the meantime I’m a little freaked out.
Hi Shelley Thank you for reaching out and for checking out my blog. As you said, this crazy illness is difficult to diagnose online as well as in general. Being an auto-immune disorder many of the symptoms mimic other illnesses and the symptoms look different for everyone. What you have described does sound familiar in my MS world BUT, please don’t take that to mean that I think you may have MS. There are so many other things it could be as well, many completely minor.
I’m glad you have an appointment with a neurologist and that is definitely the next best step. If it turns out you have MS, please know this very encouraging information- medications are getting better and better each day and are becoming easier to take as well. There are also many medications to help with the symptoms. Many people with MS do not see drastic progression and thus, there is a ton of good news for the future of someone diagnosed. If you go to the links section of this website you will see a list of excellent online agencies who can better answer your questions and provide support.
But since you have reached out to me, I want to tell you two things that I have found helpful in my journey. 1. Be honest with your doctor and it is crucial to feel comfortable with him or her. If you don’t, then try to change to a doctor you do feel comfortable with. And 2. I truly, truly believe that with faith and a sense of humor, you will go places you never thought possible, no matter what life throws at you. My very best to you.
PS- Pls let me know what your neurologist says and private message me if you would like to be connected to online support groups- I rely on them!
Thanks for replying. I’ve had a million various symptoms over the years but last night really scared me. The sharp shooting pains were everywhere. May be more consistent with fibro, or lyme dz from what I hear… but I just want an answer so I have something to hold on to. How long did it take for you to get diagnosed? Were there any clear cut definite symptoms that made your diagnosis more obvious? If the MRI comes back normal, dogs that mean I definitely don’t have MS? I know I need to ask the neuro but the less I need to absorb on that visit, the better I can focus on other important things. What other tests should I expect or request? Fully understanding it will be a process of ruling multiple things out.
So not being a doctor I am hesitant to say too much for fear of giving you bad info. But I also know the frustration of asking questions and getting vague, convoluted answers in response. So I will do my best to answer based only on my experience. I was diagnosed within a month but I have heard that is quicker than most. I think the reason I was diagnosed so quickly was because my MRI showed very clear, obvious lesions. I had an EMG test- Electromyography test first and then my doctor sent me for an MRI. I was glad that I didn’t need a spinal tap as I have heard they are not fun. I’m not sure if they even use those anymore. Does this help at all? Sorry I can’t offer more..
PS Feel free to ask me these questions and I am happy to respond based on my experience only. But please also know that one of the frustrations of MS is that it is different for everyone so no two experiences are the same. To help ease your concerns a bit, consider getting my book MS Madness! as it explains a lot of what you are going through now but from a lighthearted approach. You may be able to relate to a lot of what I went through while my experience eases your mind a bit. If you have an e-reader you can get it quickly. I say that as I think my book may be helpful to you but I don’t mean to pressure you either as I am happy to answer your questions here as well.
Thank you so much, that’s exactly what I was curious about. I’m a nurse so i do understand some of this but conditions like MS & fibro are never textbook. I like hearing peoples stories anyway, so reading about journeys at least similar to what I’m dealing with is helpful. From what I’ve read, lumbar puncture (spinal tap) is quite painful but very conclusive. I expect the neuro to order an MRI and I hope for an EMG to start. And rest assure, I completely understand you are in no way suggesting I have MS, but to hear what these first steps may entail is good. Like I said, I’ve read it in my nursing books but that doesn’t seem sufficient by far. I think one of the hard things for me is feeling like I’m sitting alone with what I’m feeling. It’s hard to tell my family about all these pains they can’t see… My family is SUPER supportive so I know it’s me who needs to get over that. It’s like I want ppl to know that I’m feeling these pains, but I don’t want all the “don’t worry, maybe it’s nothing” comments. I want them to know but don’t want any reply. Right now it feels like a bee is singing the middle of my back. But trying to tell someone that, I feel crazy. Knowing I’m not alone in being scared/confused about the time between start of symptoms and diagnosis. Thank you 🙂
I’m very glad I was able to help Shelley-my very best to you!! Please keep me posted on how you are doing. I totally understand the sensations you are experiencing. I say, tell them to your family-the bee singing is very descriptive and it may help them get an idea of what’s going on. I’m glad to hear that they are supportive- that is crucial. Wishing you the very best!
So I saw the neuro and wasn’t satisfied with his diagnoses. He said the numbness I’ve had mostly in my hands but also in my feet is carpal tunnel. If so, why is it more in my LEFT hand when I’m a righty? And why is it sometimes in my feet? The sharp shooting pains throughout my body he’s calling arthralgia (joint/bone pain). I’m convinced it’s nerve pain, it’s definitely NOT my joints and unrelated to my movements. So frustrating. And then when I ever mentioned my research pointing towards MS or fibro suddenly I was treated like a hypochondriac. On the bright side, he ordered a brain MRI and an EMG of my arms as well as bloodwork to rule out lyme disease.
You know those times when things seem ominous? Like the day before my PCP appt, paying for gas I was asked if I’d donate to the MS fund. A few days later I found your card, Yvonne, given to me last November. Then I see a newspaper ad for an MS discussion group. It was all over website ads when I searched for ANYTHING (including arthralgia). Suddenly I seen surrounded by it and is not by my own searching.
Last vent point- I mention it to an aunt (MD) and she says “oh, MS is nothing these days”… that just added to my frustration. I understand there are meds to reduce flares and relieve symptoms… but it’s not NOTHING. I just needed to vent to someone who may understand. Thanks for listening!
Hi Shelley- I am so disappointed in your aunt. If she wanted to encourage you and help minimize your fears what she should have said was, “the good thing is that there has been a lot of progress in treating MS and there are many things that can be done to help if that is what you have.” This is what I have said to many who expressed concerns and it helped them. And I didn’t even go to medical school! Unfortunately, the frustration you experience is part of the frustrating journey. And being frustrated at the hands of the medical community is also nothing new. I am thankful that I have an awesome primary care and neurologist but that wasn’t always the case. Why don’t they understand that you are trying to get to the bottom of what’s going on, no matter what it is, so you can come up with a proper treatment plan? So sorry you are going through this friend. My very best to you.
Sativex costs £500 a month? That is ridiculous. Taking the medicinal dose of weed, which is considerably less than the recreational dose (i.e. it relieves spasms and pain without getting you stoned) will cost you about £50 a month. You don’t have to smoke it, either. You can either use a vaporiser, or cook a wide variety of delicious meals with it. See “The Cannabis Cookbook” for more information, or google Patricia Tabram.
£500 will buy between two and three ounces of premium-quality weed, which will keep a hardened stoner completely and continuously ripped for a month or maybe even longer. In other words, £500 will buy weed way above any conceivable month’s medical need. If the drug companies are charging this much for a month’s prescription of Sativex, they are badly ripping the NHS off.
There is a clear case for legalising medical cannabis, as has been done in at least 23 US states. (three more passing legislation now, which will bring it up to 26, or a majority). But it is also pretty obvious this would put a dent in the profits of the people who make Sativex and other cannabis-based medications.
http://tinyurl.com/mscannabis
http://en.wikipedia.org/wiki/Multiple_sclerosis
Good to know Wlad- thank you for the info!