A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.
Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:
Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.
Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.
“I’m suffering from a silent disease. I hurt everyday. I hurt from head to toe. My brain fog, is actually my brain hurting.”
Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.
“I dont’ want to be treated different. I just want you to undertand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”
Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:
Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.
Jessica, like many of us has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.
“You don’t want to have something….but can they just find something, so we know what to do.”
Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.
Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day to day pain.
They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”
How does Jessica stay positive? One way is that her and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:
“You have to just accept it.
“It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”
“Knowing what makes you feel better and doing those things.”
“You have to fight it!”
She has support around her and they keep it light hearted and help her find the humor in the day to day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day to day fight. A fight that she is willing to do with a smile on her face.
Living in constant pain can make a person lose hope. Not everyone can understand how much harder regular tasks can be when you have a chronic illness like fibromyalgia. I recently found myself in a vicious cycle of feeling sorry for myself. So, I did some reading and found some ways to find happiness and guess what? Expressing gratitude is a big way to find happiness. Of course, I have to share what I have learned with all of you, so here is how to express gratitude when you live in constantpain.
I know when I came across this information it seemed a given that feeling grateful makes you feel good. But, it is important to know why you should do it. So, here are some benefits.
To be honest, I am mostly a “glass is half empty” kind of person. Add some incurable chronic illnesses and you have the recipe for further depression and unhappiness. Truly, I know no one wants to live this way, especially me. That is why I had to find a way to see the light. Honestly, it would be so easy to let the darkness claim me; but what about my life- what about those that love me? Ultimately, this is where the search for happiness came in for me. I hope you decide to go on this journey as well.
There are so many little ways you can practice gratitude everyday of the year, not just around the holidays. If you are like me and find it hard to find the bright side, or at least it takes some effort then I recommend practice, practice, and more practice. Finally, here are some ways I find work for me:
Meditation: You can do this on your own or in a guided session. If doing on your own, focus on something or someone that you find you are grateful for. I use the Calm app and they actually have a 7-day series on learning to find gratitude.
Journal. Write 3-5 things in a journal every night before bed that you are grateful for. Then, recite them out loud or in your head. As you do this let your whole body feel the appreciation.
Write someone a gratitude letter. I love this one because it makes you both happy. Basically, you just write a letter to someone and tell them how their action made you feel.
Give a small gift. This could be as simple as bringing a treat into work for your co-workers, a small trinket for a friend or flowers from your garden. Really, it doesn’t have to cost much but the small gesture tells the person that you appreciate them.
Publicly thank someone. This is an easy one to do on social media. Share a photo of someone you are grateful for and tag them. Include a message of what they do that you are so thankful for. This is another feel good one for both involved.
Random acts of kindness. I absolutely love this one because this is also something you can do anonymously. I don’t know if you have ever experienced giving to someone without them knowing it was you- it just leaves a warm feeling all over.
Pay it forward or pay it back. An example of this is if someone in a drive through line paid for your order, then you pay for the person behind you in line. Paying it back means that you do something nice for the person who is doing something nice for you. When you have a chronic illness this goes double for your caretaker. Honestly, it can be as simple as giving them a smile or a hug and saying thank you.
Give someone your full attention. These days with so much happening at once it can be hard not to try to multi-task while someone is trying to talk to you. However, you can show them gratitude by putting everything down and just listening.
Be creative! Sit down and make a list of all the ways you can show someone your gratitude. If you have a certain talent use it! Examples of this are writing a poem, singing a song, playing an instrument or even making a special dish. Really, the possibilities are endless.
Make this a habit. Expressing your gratitude can be as simple as thinking about how grateful you are for anything and everything. Clearly, you don’t have to go to all the lengths listed above and you can certainly do more. The most important thing is to find a way to do it.
Before I became ill, I was the go to person in my household. If something needed to be done it was probably me that did it. I took care of everyone and everything, except myself. Most moms can probably relate to the thankless part of our jobs. There was hardly a thank you given to me.
After I was diagnosed with fibromyalgia, see my full story in Coming Out With A Invsible Illness, things started to change for me. It didn’t happen right away though, it took some time and me getting worse. I was in terrible daily pain, severe exhaustion even when I did nothing to warrant it and I just couldn’t function. Sadly, this included doing cooking, cleaning and taking care of my kids and husband. I just couldn’t do it anymore. Ultimately, the dynamics of the house had to change!
My kids started helping out more and my husband not only shared in more chores he was often the only one doing them. I guess since I came from the one doing everything to now not being able to hardly do anything I could appreciate the help. Eventually, I figured out that by showing my gratitude to my family, I actually felt a little better overall and happy. Even though I didn’t feel I had many reasons to be happy, I started finding the reasons!
It is important for me to keep being creative with how I show gratitude. It was stated in a gratitude meditation by Tamara Levitt from the Calm App that, “gratitude can be a superpower!” I mean all you have to do is just look at all the benefits that I listed in the beginning of this article; it truly is amazing. So how can you keep it up?
Like I said before practice, practice, and practice.
Make a ritual out of it.
Keep a journal of not only the things and people you are grateful for, but how you have shown them your gratitude.
Give yourself time to make it a habit and don’t give up.
Show yourself gratitude as well by constantly “flipping the script” on negative thoughts and reminding yourself of your positive qualities.
The biggest lesson I have learned from my experience with elimination diets is that food can help and hurt your body. For so many years I have used food to fulfill my emotional needs. I should have realized how vital food is for my body as well. Although, I don’t claim to have a cure for fibromyalgia. I do however have some tips on improving fibromyalgia symptoms with an elimination diet.
An elimination diet is a process you can go through eliminating certain foods and then strategically re-introducing those foods one by one. This makes it easier to determine what if any foods are causing you pain. If you want more information, I explain in more detail in my article How To Get Started On An Elimination Diet. Ideally in the end, you permanently stop eating the foods that gave you a reaction.
Document– keep track of what you are eating. Especially keep track during re-introduction.
Allergytesting– jump-start your journey by doing a hair intolerance test. I used 5 Strands Affordable Testing. This will tell you what level of intolerance you may have for certain foods.
Everyone is going to have different reactions to different foods. My journey was remarkable and I experienced many benefits. I do want to stress that I went through this process under a physician’s care. Here are the benefits I experienced:
Less Inflammation and pain: The number one benefit was less pain. I have a feeling that the lack of sugar had a lot to do with this lack of pain. It wasn’t something I noticed right away either; it took some time.
Clearer Skin: This was a surprise but a very welcome one. In my article on Fibromyalgia and Rashes I talk about how even my hair follicles get inflamed. Cleaning up my diet with an elimination diet also cleared up the inflammation in my skin. No longer did I get rashes or itchy bumps on my skin and scalp.
More Energy: I started realizing I had more energy throughout the day. I also feel like this had a lot to do with not eating sugar. In addition, all the extra nutrients I was consuming through fruits and vegetables only helped my situation.
Weight-Loss: I didn’t do this diet to lose weight and I really didn’t expect it at all. However, I ended up losing thirty pounds overall. I felt so much better, so much lighter than I had before I started.
I have tried so many of the “fibromyalgia medicines” that is out there. None of it helped enough to be worth the side effects I went through. That is when I turned to holistic methods and looked at my nutrition. Currently, there isn’t enough research on fibromyalgia to even fully understand the cause much less a cure. In no way am I saying improving your nutrition will cure your fibromyalgia. What improving your nutrition can do is improve your overall health. By improving your overall health you may be able to gain more control over your fibromyalgia symptoms.
I have found that by managing my stress, improving nutrition and daily exercise I can better control my fibromyalgia flares. Of course, the minute one of those things gets out of control I am on damage control. This is where I am currently, sadly. I let my nutrition get out of control during the holidays and the pain and fatigue I have been experiencing has been exponential.
I have started a Facebook private group to help educate and support those trying to make healthy eating a lifestyle. Feel free to click the link and join. I have partnered with 2 other health coaches to provide quality content and support for free! If you are interested in receiving health coaching please visit my wellness empowerment coaching page for more information.
We talk a lot about how fibromyalgia affects women, but did you know than men can have it too? I want to introduce you to Ted Hutchinson, That Gaming Dad! We had a really good conversation about everything from getting diagnosed, living with fibromyalgia as a man and advocating for our community. He not only tells us how much harder it is to get diagnosed as a man but how to re-create your life after a fibromyalgia diagnosis.
Ted talks about what goes on behind the scenes for someone living with a chronic illness like fibromyalgia and CFS.
Ted explains to us that he initially was treated for “acute injuries” and it took eight years to finally get diagnosed. His symptoms started with back pain and exhaustion. He had to finally find a doctor who had experience with fibromyalgia to get diagnosed. This is when he realized there wasn’t a simple fix he remembers thinking, “cool….we can take care of this and I get back to my normal life, right? Unfortunately, that wasn’t the case and it has been a very long road.”
For Ted getting off the pharmaceuticals and finding holistic ways to improve his symptoms has been key. The medicine he had been on had made his life worse than they helped. He has found cannabis and Kratom to be the most helpful for his symptoms. Ted tells me that Kratom is a cousin to the coffee tree and has different strains that have different effects. Some strains help with anxiety and depression, some are like an opiate replacement and some a coffee strain. It can be addictive and should be used in moderation. It comes in many forms like powder, capsules and leaves and can be digested.
“My pain never goes away, but I can take the edge off it to at least know that I’m not going to overexert myself.”
“I was addicted to opiates and that was something that happened through doctor prescriptions…Cymbalta! I would rather go through opiate withdrawals then ever come off Cymbalta…that time of my life was some of the worst hell I ever felt.”
Ted tells us what it is like when there is a stigma around the man being the breadwinner of the house. “There is a myth that men can’t get this type of illness and it just isn’t true. He goes on to tell us how he sees the issue, “You just have to re-create your life. For me as a man, it was important to just put myself out there and share my story and just explain to people why this can affect anybody, really.”
I think you will walk away from watching this video and feel inspired that you can still find a way to live a fulfilling life. I have given some quotes from the video here, but honestly they are best heard directly from Ted in the video.
“Everyone has a path…you’ve got your own journey to go on. For me it was my gaming, my advocacy, it was sharing my story…I can still do it in this capacity, just when I’m well enough, right to be able to share my story.”
I had to share this quote in its entirety as I felt it was so inspiring. This is Ted’s response to being asked what advice he would give someone with fibromyalgia:
“Have faith in yourself. Have faith that you have the capacity to be able to be able to overcome whatever it is that you have going on. Does that mean you are going to overcome and go right back to being the construction worker or working 50-60 hours a week? Maybe, maybe not who knows. But Have faith in yourself that you can re-create a life for yourself and create things that are positive influences not only to yourself but the people around you. So, while you may get this heavy burden that has been put upon you. You have a duty to be able to take that burden and hopefully be able to lighten that own load for yourself. You yourself don’t’ deserve to have to carry that all by yourself. There are people out there that love you and people who do support you. You just have to be able to step outside your own self and look at the big picture and have faith that you can overcome anything. Not even in a religious aspect just faith in yourself. Believe in you!”
Ted has built a community with his video gaming on Facebook. His community talks about important issues while playing. He also uses this platform to connect with his kids and bringing those in the chronic illness community closer together.
“Even if you are sick, even if you have things going on you can still make a name for yourself and you can still put your name out there and you can still make a life. It just may be a different life than you were used to.”
Fibromyalgia is such a complex condition. It affects you physically, cognitively and emotionally. Sometimes, if forces us to change who we are or suffer the consequences. This is where I have a hard time because I have dreams and goals and I’m not ready to give them up. Today I woke up feeling the weight of fibromyalgia on my body and my soul.
Most people hate getting up in the morning. I know very few people that just jump right up and seize the day. It is a process, am I right? Most days are hard to get going for me, as I’m usually stiff and hurting as soon as my eyes open. I try to do some stretches in bed to help ease it but some days are harder than others on that front. So I pull myself up from lying down and sit there for a bit, trying to gain strength to move my body. The weight of myself feels unbearable.
On days like this deciding to take a shower or not is a major decision. I think on one hand it could help loosen my muscles and relax me. On the other hand, it could take so much of my energy I might be done for the day. I try to get up two hours before I have to leave for work so I have time to adjust to the whole mess. Then there is the catch 22 of if I’m having a really hard day it is almost impossible to get myself up that early.
It isn’t just the weight of my body that is causing me trouble. It is my mind as well. I can’t seem to think to make a decision as simple as taking a shower or not. It is like a weight is being put on my brain and I just can’t lift it no matter what. It is days like this that I fear driving myself to work. Will I be able to react as quickly as I need to? Will I remember where I am or where I’m going? These are valid concerns that I’m sure any fibromyalgia warrior can relate with.
This weight continues on throughout the day making finding words difficult. Sometimes I feel like an idiot as I try to stammer through a conversation where I know I sound stupid. But I am NOT stupid and you are NOT either. This is what fibromyalgia does to us though. Being cognitively impaired is a result of the weight of fibromyalgia.
The impact fibromyalgia has on my emotions is sometimes greater than all others, especially on days where I have been struggling consecutively. As I have explained in my article Fibromyalgia and Mental Health, I have been battling depression my whole life. Fibromyalgia can take that depression and increase it ten fold sometimes. The weight of fibromyalgia on my emotions plunges me into darkness and it takes a lot of strength to pull myself out. The anxiety and worry over everything gets to be too much and makes me more exhausted. All the while, I have to push through and go to work each day because I have to, not necessarily because I am able to.
In the end, the weight of fibromyalgia hurts my soul. I tend to be a pessimist however, I work really hard to stay positive or at least re-direct my thoughts. My soul captures all this pain, agony and fatigue and I have to decide what to do with it. Do I let it drag me down further? Or do I give up? Do I call out sick and lie around and feel sorry for myself? For me personally, the answer is NO!
I know I’ve painted a pretty grim picture, but it is my truth and probably for some of you reading this as well. The above is how I feel almost every day at some point during the day. How do I get through it? Well, one foot in front of the other my friend, one foot in front of the other! I feel I have no choice but to keep fighting, keep re-directing my thoughts and keep finding ways to take the weight off of me. Here are some steps I take to pull myself out:
Exercise: I know with all I said, you might wonder how. Believe me, sometimes I wonder as well. I modify my exercise to the daily ability I have. If it is a tough day, maybe I just walk in place a few times throughout the day and add in some stretches. I give some ideas on how fibromyalgia warriors can exercise in The Spoonie Exercise Challenge.
Healthy Eating: I have found that I overall feel much better when I put whole, real foods into my body. This may seem like a no-brainer, but when you are addicted to sugar it can really be a hard challenge. In a couple articles I have given some ideas on Healthy Breakfast Ideas and also How To Start An Elimination Diet if you want to check those out.
Planning: This is a tough one, because you can’t always plan for a flare or know you aren’t going to feel well. I plan my meals out each Sunday and try to prep as much as I can. I enlist the help of my family in all areas they are willing. This is also often where I have a hard time as asking for help in the right way can be a challenge for me. I use my planner and write out all my responsibilities for the week. This helps with the brain fog and just keeping myself as organized as possible.
Meditation: Admittedly, I don’t use this one as much as I should. But, it has helped calm and center me. I like to do breathing exercises to calm myself and take my mind off my anxiety at the moment. Sometimes, when I am at work and the weight of everything feels too much, I just close my eyes and focus on my breath for a few minutes. It doesn’t fix everything but it does help get me through the moment.
Having Fibromyalgia is like a roller coaster ride. Most days I just don’t know how I am going to feel. I try to have a positive mindset and I find it helps when I’m around others with a positive mindset as well. However, I realized that not everyone wants to hear or see positivity right now. Frankly, I can understand that – I use to feel that way too. I started to realize I have a choice in either suffering from fibromyalgia or fighting it.
I was not always positive about my attitude towards my illness. In fact, you can read my first article on admitting I was sick publicly, Coming Out With An Invisible Illness. In addition to not being positive, I didn’t want anyone to know I was sick. It was like my dirty secret.
Telling people I was sick was admitting it to them and myself.
Admitting I was sick might mean I wasn’t able to fulfill my goals.
If I admitted I was sick I might have to slow down and put myself first.
How can I put myself first, when for so long I have put others first?
If I put myself over others, I would feel selfish.
I said a main reason was I didn’t want people to feel sorry for me. I said that because really, I felt sorry for myself and was ashamed of that feeling.
If people knew, they might think I was weak.
Staying in denial meant I didn’t need to make any changes.
My self-esteem was too caught up in how others viewed me (still is). If they thought differently of me, like I was less than I used to be…. maybe I was less than.
This way of thinking only made my illness scream louder at me that I needed to stop. Fibromyalgia is hardly ever on its own. On the contrary, it has a web of other illnesses that usually come with it. So pushing my mind, body and soul beyond its limits is something Fibromyalgia does not like. When my body finally gave out on me, I had to face my illness and myself. Doing something like this makes a person go through the stages of grief. So, one of those stages is finally acceptance, right? That is what happened, I accepted I was sick.
In doing so I became very depressed. I did what I had been dreading, I felt sorry for myself. The negative self-talk was going like crazy at this point.
“I don’t know how I’m going to do my job anymore”
“I’m a horrible mother, I can’t even take my son outside for a walk”
“How can I finish school? I can’t! I’m going to have to quit”
I know you can relate to some of these. Honestly, this way of thinking and living can take a person down a dark path. You might be asking, “Why are you telling me all of this?” Well friend, I am telling you to show you how deeply negative my thinking can get. So, how do I pull myself from the negative to the positive you so often see from me?
Yes, I make a choice each and every time. I choose to find some light in the darkness and so can you. It takes practice and a little effort, but I’m confident you can do it. Here are some steps to help you through.
Write down all the positive qualities about yourself and save this for later.
When a negative thought appears, pull out your list (if you need to).
This is where you remind yourself of the positives from your list.
Yes, I have fibromyalgia and I’m in pain. However, I am also funny and can laugh at myself. I got this!
Yes, I am feeling depressed right now. It seems to be pulling me farther into the darkness and all seems hopeless. However, you have pulled yourself out of darkness like this before! You are strong-willed and determined and you got this!
Put this on repeat (believe me it takes practice).
Now you may be saying this is great, but this alone can’t change my negativity. This is true. There are more tools you can use to keep yourself positive.
Mindfulness– yes, meditation can help keep you focused. There are many different types of meditation available. I encourage you to pursue one and make it a daily ritual.
Gratitude– I learned in my positivity psychology class, that one of the ways to pursue happiness is to show gratitude. Give it a try by writing a letter to someone you know that did something nice for you. Simply put, let them know how much that gesture meant to you and thank them. Trust me on this- it will feel good.
Goal setting– You might be thinking this is where I lose you. This one will be different for everyone. Some of us are really very sick and can barely function. I know there is a goal you can set for yourself though. I recently set a goal of walking for 5 minutes every day. To those who can easily walk longer, that might not seem like much. However, to those who can’t even walk 5 minutes you know how big that can be. Making your goal small and obtainable will leave you feeling positive when you accomplish it.
So, are you fighting your chronic illness? Or, are you suffering from your chronic illness? This is a choice only you can make. It is personal and individual and there really isn’t a right or wrong answer. You can even do both sometimes I know I do.
Fighting your chronic illness means that every day you choose to keep going, even when you think you can’t anymore. It means that you consciously turn your negative thoughts about yourself and your illness into something positive. Lastly, fighting your chronic illness means that you will not be its victim.
Suffering from your chronic illness means that you let your illness control you. Don’t get me wrong, our illness always controls us in some aspect whether we like it or not. However, when we suffer, we have no choices, we are the victim.
As you can see, in both these scenarios we have the same illness. In one we feel more in control than we do in the other. As I said before, there are days I am fighting fibromyalgia and days I am suffering from it. The difference is the way I choose to look at it, with positivity or negativity. We can’t control that we have a chronic illness, but we can control how we handle it from here.
It has been awhile since I sat down to write. Life has been overwhelming, wouldn’t you agree? I’ve been contemplating my place in the world and what I want that place to look like. I’ve shed most of my responsibilities and stayed away from social media, so you might be wondering why now am I deciding to write? Well, to be honest I feel broken and I need to put myself back together. So, let’s find out how I let a pandemic and fibromyalgia break me.
It started with putting too much on my plate. I love this analogy! What happens when you go to an all you can eat buffet? You eat too much, don’t you? You sit there with too much on your plate and not only that but you have several different plates sitting in front of you. I don’t even eat everything, so what does that mean? It means things get wasted. That is what I have been doing. Trying to accomplish too many things at once has led me to wasting certain things in my life.
If you have fibromyalgia then you have probably battled with depression. For some reason they tend to go hand in hand. It could be due to what fibromyalgia does to your body and soul. For me, depression came first and I easily fall into it and I’m not talking about just feeling sad. This is full blown, can’t move, paralyzed with darkness depression. I talk a lot about fighting depression. Honestly though, it is an illness on its own and I don’t control it. If I use my tools I can manage it, but I can’t seem to do anything to make it go away.
Staying home for months has made it clear to me that I am an introvert, no doubt about that. However, there is an extroverted part of me that thrives on spending time with other (select) people. In fact, I now believe that being social in some way is what has helped me keep my depression in check. Without that interaction, I have fallen into the abyss. Really, I had let a pandemic and fibromyalgia break me.
My anxiety is deeply rooted for many reasons and I tend to let my mind go on the worry trail until I’m so worked up I can’t cope. This, my friends, takes practice to control. Lucky me, I also have IBS and that alone has created an anxiety in me that is hard to beat. So you throw in a pandemic and worry over my health and my loved ones and you have a recipe for disaster. If you are someone who is not worried about getting the Coronavirus, then I am happy for you. I am not one of those people. I worry about my family, my friends and myself.
For my friends that have anxiety like I do, lets talk about how we can take a little control back. First of all, have you heard of the expression, “don’t worry about what you cannot control?” This is a hard one, but it is necessary. Can you control getting the virus? Yes and No. You can wash your hands, not touch your face, wear a mask and social distance. You must weigh the cost versus benefit when it comes to any activity outside the house. We can’t control other people, so all we can do is control our own actions. Sadly, anyone not following safe behavior is not someone I am going to be around right now. All of these steps help calm my anxiety as I take control of what I can do.
To be honest, I started writing this article a month or so ago. I was feeling completely broken. Now, I wouldn’t say I’m back to normal yet, but I’m getting there. I take as many steps toward wellness as I can take and forgive myself when I falter. An example of this is that I force myself to do things like ride my bike, go for a walk and stretch. I find my center while meditating. I am part of two clubs at my university and on the board of one. This has reminded me how important it is to be a part of something bigger than myself.
I try to remain in the present with a hopeful eye to the future. This is hard with so many horrible atrocities happening all around us. Now more than ever, I am controlling who and what is around me. I deleted all my social media apps to prevent myself from going on there and I try to keep as much positivity as possible. I’m not saying that I’m not paying attention, I’m just weeding out the unnecessary. For anyone having a hard time like I am, I want to remind you of the available resources out there for you. There is the crisis text line, just text 741741. In addition, there is always the suicide hotline 800-273-8255. Sometimes it helps to speak to someone outside your life. If you feel comfortable it also helps to confide in a friend or loved one. You may find that they are also having a hard time right now. We will get through this together.
At the age of thirty-nine I decided to go back to college and finish my degree that I had started over 20 years prior. If I thought college was hard at eighteen, I had no idea what was in store for me. At this time, I was married with three kids and a full-time job. I wondered how I was going to fulfill all my responsibilities. I didn’t know at first what my end goal was going to be other than just getting my AA. It wasn’t until a couple years in that I finally decided on Psychology.
About a year into taking 2 classes per semester and working full-time I was diagnosed with fibromyalgia. I always ran myself ragged as an adult, so I was used to feeling tired all the time. This time though the tired came with pain, a lot of pain. My first reaction was that I wasn’t going to let anything stop me, not even fibromyalgia. I pretty much didn’t until 2018. This was the year that fibromyalgia stopped my whole life. I had to take time off from work and school for a few months. Even when I went back to both I still wasn’t at full capacity.
I seemed to have developed a tenacity in my old age though and I still wasn’t going to quit. I kept on taking 2 classes per semester and working full-time. Let’s not forget still raising a family at the same time. This has not been easy, but nothing worth doing is.
I often hear, “I don’t know how you do it” from people. I always tell people my two secrets are that (1) I have a planner that I use for everything and (2) my house is a mess (don’t judge). When you are working towards a goal sometimes sacrifices have to be made. Sadly, what I sacrificed a lot of was taking better care of myself (see above flare). The other part that has been hard is the fact that I am a Virgo and I LOVE organization. But loving being organized and having the energy to clean and organize your house are separate. I can’t do it all, so I have to choose.
This is exactly how I organize my college career down to the semester level. I do not claim that what has worked for me will work for you. The key is you have to take your own life circumstances into account and do what is best for you.
It helps if you define your goal completely. This means knowing what you are working towards and how to get there. If you were like me and couldn’t see that far ahead then I broke down my goals.
The first step I take at the beginning of each semester is to map out my semester. I am addicted to Erin Condren planners, but you can use any that you want. I write out each week’s readings and assignments, making special note of bigger projects or exams. This really helps me plan out my energy to make sure I complete everything when I have the most energy. I recommend planners and even wall calendars so you can easily visualize what is to come. You can even use technology and utilize apps on your phone for assignment reminders.
Speaking of technology if you are using Word or Google Drive make sure to break down courses into corresponding folders to keep all your documents organized and easy to find.
Each week I look at what is expected of me in my classes and then I fill in other responsibilities outside of school. Each Sunday, I review the week ahead and see where I can fit each item in the best. I have learned to give myself plenty of leeway for those days I don’t feel well. This has served me well over the last seven years. Granted there have been times I had to really struggle and push through pain and exhaustion, but that is also just part of living with fibromyalgia.
When I was working on my AA, I had to take classes at the college physically. This was a challenge since I worked all day. My secret to getting through these days was to not just pack lunch for work, but dinner as well. I went straight to school after work and sat in my car. This was my free time and I could either eat my dinner and do some homework or take a nap (which I often did). I recommend only a 20-minute nap at the most, otherwise you will feel too tired to go on with your night.
Since enrolling in Penn State World Campus all my classes have been online. Still I feel drained after work and so I often lay down for a quick nap before starting any homework. Sometimes this ends up that I cannot function the rest of the night. This is where the planning and allowing leeway from above comes in. This is why I plan for earlier deadlines to give myself more time if I need it.
Join clubs! You are not too old, and this is a great way to establish social support. In addition, if you do want to go to graduate school having some extra-curricular activities is good for your application.
Wellness is so important to maintain while completing college. This is the one area I struggle with the most and need this reminder myself.
Sometimes you have to just put it all down and go for a walk outside!
These are just some of the ways I have gotten through college as an adult-student with fibromyalgia. I think being a college student with fibromyalgia is possible and I hope these tips help you! Feel free to reach out if you are in the same situation. I would love to hear any tips and tricks you may have as well.
Staring down at my beautiful new son I am filled with love, so much love. I practically imagine his whole life in front of me. How wonderful his life is going to be and how happy we all will be together. I’m not sure if everyone feels this way when they first see their newborn baby or if it’s just me. I don’t care though; I have a son and I am on cloud nine! Little do I know what is in store for me and how hard my life is about to get. I wish the me today could warn the me back then. Buckle up because here we go…
My Special Son
I always thought my son was special, I just didn’t know how special. I think all parents would agree you never want anything to be wrong with your child. You want to always keep them healthy and safe and you do all you can to accomplish that. I did everything I could to keep him healthy, safe and thriving. Sometimes though, there are things that are just out of your control. It isn’t anyone’s fault. (My son has given his permission and blessing for this post)
The BackStory
First of all, I want to say writing this has been very difficult. This is the first time that I am truly talking about this publicly as I always try to respect my son’s privacy. I also feel like we need to break down the barriers surrounding mental illness and make it something we can talk about. So, I decided to make this sacrifice in hopes it will help at least one person in the situation.
My son was always kind of demanding and he threw tantrums frequently. After he was asked to leave his second preschool, I knew I had to get some help. What was wrong with my toddler? I thought for a while this is what it is like to have a boy. They get hurt, break things and have a lot of energy, right? I’ll never forget the day in his psychologist’s office when I was told, “I think your son has bi-polar disorder.” I of course am in shock – he is only three years old – how can you know that?
I felt punched in the gut. So many questions…What does this mean? What do we do? I had no idea what was coming, and I wasn’t ready. All I was thinking about was how to protect my son and how to help him. I wasn’t thinking about my own health or taking care of myself. My husband and I decided we didn’t want to put him on medication if we didn’t need to, instead we went ahead and kept him in therapy.
The Day That Changed Everything
Then one day he comes up to me with a knife and says he wants to kill himself. A piece inside of me starts to die in that moment and I didn’t realize at the time how I would never be the same again and neither would he. I decided not to hospitalize my toddler.
The anxiety of not knowing what would happen to him in my absence was too overwhelming. Instead we opted for medicine. Looking back, I’m still not sure what the right decision could have been. If you ask my son, it wasn’t the medication. He will go on to always resent the fact that his childhood is a haze because he was always on some kind of drug.
I don’t know if I can put into words the years of struggle that will follow this, but I will try. What I do know is that watching your child suffer like I have watched my son suffer, is the most excruciating feeling in the world. He ends up going through countless assessments, many different psychiatrists and therapists for years. He was unable to handle a regular classroom, so he began kindergarten in special education with other emotionally disturbed children. That whole experience is a whole different story.
For me, this time period is filled with working full-time and getting him to his appointments. This means keeping track of side effects, symptoms, past medications. In fact, in order to keep it all straight, I had a huge binder.
The Tears and Tantrums
The tantrums that my son experienced were the worst I have ever seen. He would completely demolish his bedroom, even turning his mattress on its side. Often, I would have to get behind him and hold him down to get him to come out of his rage. This would result in me accidentally getting hurt often, not to mention the amount of energy it would take to hold him. I might have forgotten to mention, from the moment my son was born he was a large child. His whole life he has been bigger than everyone and looked older than he was – which didn’t help the situation. Currently he is 6 ft. 8 in. tall! These moments add up and begin to take a toll on my emotional and physical health.
To add insult to injury the mental health professionals would change his diagnosis all the time. I think that was hard because you want to put a name to it. But we were told that wasn’t important. It was more important to “treat the symptoms.” That left me feeling very alone and lost. I didn’t know who to look to for support or what to Google on the internet. Was I making the right decisions for my son? That question still lingers to this day and continues with my younger son as well.
Raising a child with a mental illness is probably the hardest thing I have ever had to do. I have made so many mistakes and learned so much. What I learned most is how strong I am and how strong he can be. I think all that he and I have been through together has solidified our bond that we made that very first day we laid eyes on each other. He knows I will do anything for him. I have proven that over and over by fighting for his rights and advocating for his education. I have had to make very, very hard heartbreaking decisions that he may never forgive me for. However, I know he knows that they were made out of love and the fierce protection that I will always have for him.
There is such a stigma on mental illness that for a long time I was afraid to talk about my son’s illness. I can’t tell you how alone I felt. I didn’t know about social media until he was already mostly grown. Not to mention the fact that I am very protective of his privacy. I will say though, that he had a handful of therapists that were my saving grace. They helped me be a better mom and reminded me how I was doing an awesome job. Those kinds of talks are what kept me going.
The Emotional and Physical Toll on Me
Anyone with fibromyalgia knows how bad symptoms get when you don’t manage your stress. It could be that the years of stress my body went through left me susceptible to fibromyalgia. I didn’t ask for help enough and I didn’t use coping mechanisms to protect myself. Often, I was blamed for his behaviors. I was told my parenting was to blame. Believe me I didn’t need anyone making me feel guilty. I already felt like a horrible mother, in way over my head. Overwhelmed and exhausted. I don’t blame my son; I blame me for not taking better care of myself while trying to take care of him. If I could go back and tell myself anything it would be this:
“Take time to take care of you. Be consistent in your discipline and your love with your son and yourself. Forgive him for what he does and forgive yourself because you are doing a great job! “
Not Alone Now
I am opening up about this because I know I’m not the only one that has gone through this. No one wants to feel alone. I also think it is a really good lesson in how we need to prioritize self-care when caring for others. If your child becomes ill with a physical illness, you reach out for support. When your child becomes ill with a mental illness society tends to tell you to keep that to yourself. That is ridiculous and we need to change it. Conversations like this is how we do that. I am proud of my son! It is not his fault that he has mental illness and in fact, because of his illness he is a stronger, more insightful person than I could have hoped for. I encourage you to share in the comments if you have gone through parenting a child with mental illness.
