I feel a different level of connection with my mother now that I, myself, am sick. She warned me and I didn’t believe her but now, now I do. 

Most of my life my mother has been sick. There was a time when I was in middle school that it got really bad. She would come home from her job, lay down on the couch, and not move for hours. Then she would drag herself off the couch and to bed and that was all she could do. Work and sleep, sleep and work. We knew she was having a good day because suddenly she would be making us clean the entire house. During that time I thought she was going to die. It turned out she did not die, she just didn’t have the right diagnosis, medication, and coping combination yet. Now that she does she gets more done and isn’t couch ridden all the time, only some of the time. 

There were many days in my life where I just didn’t understand her. I didn’t get why she was so conscious about her energy expenditure (or in the words of many people with chronic illnesses, her spoons) and I didn’t understand why she would get so annoyed with myself and my brother when we would ask her to spend her energy votes doing things for us that we could have done on our own or asked someone else to help us with. I didn’t understand her reactions to people at times when they would talk about their own illnesses or say things like “I have fibro. No, my doctor didn’t diagnose me with it but I know I have it.” I didn’t get why she would roll her eyes when people would give her advice on how to treat her medical conditions and I didn’t understand why she had to talk about her illnesses all the time. Nor did I understand why she was always carrying so many things with her to the store, my events, or on trips. And I definitely didn’t understand her apparent lack of sympathy when my brother and I would get sick, injured, or just be tired. 

Now I understand. 

There are changes that happen when we get invisible chronic illnesses. Changes we go through mentally and physically that affect the way we interact with the world and the way we see the people in our lives. There are adjustments that have to be made and new ways we have to think about ourselves and the things we are doing that affect us and our relationships. I have found that I understand my mother on a level I didn’t before now. We don’t have the same illnesses but our illness symptoms overlap in a lot of similar ways and here is what I have learned: 

1. Energy choices are a real thing. 

When you have a chronic illness that causes fatigue on the level that Multiple Sclerosis, Fibromyalgia, Cancer, Lupus, POTS or a myriad of other chronic illnesses does, those energy choices are HUGE! 

Enter spoon theory- a way that people with chronic illness all over the place talk about energy choices that has become almost a universal language for people like me and my mother to express our need to conserve energy for the things that matter to us or that we must do. 

Spoon theory was developed in 2003 by Christine Miserandino to explain how her lupus affected her ability to function daily. What it comes down to is that healthy functioning people wake up in the morning with an almost unlimited supply of energy spoons that they can use to complete tasks and their spoons replenish very quickly with shorter rests. People with chronic illness have a finite number of energy spoons we can use in a given day to get tasks done and we never really know how many spoons we have each day. Some of us can have a lot of spoons one day and only a few spoons the next. We can borrow spoons from the next day from time to time but eventually we run out of spoons. When we run out of spoons that is it for us. We can’t do anything else or function normally anymore until we replenish our spoons. Replenishing spoons takes longer for us. Where healthy people go to sleep and wake up the next day with spoons filled and ready to go for the most part, people with chronic illness might take a couple days of heavy rest to get our spoons back. 

For healthy people this is hard to understand. They want to say things like just take a break or stop being a baby, or you’re lazy, or just push through and get it done. But when we are out of spoons there is no push through and get it done. It’s like our body becomes weighted and our brains become muddy and just a simple task of standing up from the couch and moving to the bedroom is impossibly hard. 

We protect our spoons because that is all we have to get things that need to get done, done. I now understand why my mother would get so upset when we would ask her to help us and use her precious spoons when she didn’t have the spoons to spare. 

2. Everyone has an opinion. 

Oh lord, have mercy! The amount of people who have tried to tell me what to do to heal myself in the last few months since I have been diagnosed is staggering. And many have been complete and total strangers or people who have no medical degrees to speak of who actively go against doctor advice on the regular because doctors and health care is just there to take your money by making you more sick in their opinions. I have heard everything from “It’s all in your head,” (which I mean, it is in my brain so- not wrong but also so wrong), to “its parasites and you should take an animal dewormer and eat diatomaceous earth because that’s what worked for me”. 

Listen, if it worked for you then go for it. And if you don’t believe in doctors or the medical healthcare system, good for you. I love that for you. 

I don’t blindly follow doctor advice by any means and there are some doctors that have given me medical orders that I disregarded or have since stopped doing. For example- in the last six months since I have been diagnosed despite all tests showing no seizure activity for my tremors I was put on anti seizure medication. It didn’t help and I have stopped taking that medication.

And I don’t totally disregard all advice given to me. Someone mentioned Vitamin D3. I did my research and it’s been proven that higher doses of Vitamin D3 for people with MS has shown positive results in medical studies. 

But in the long haul, no I’m not going to put more strange substances into my body because it worked for your totally unrelated illness or your sister in law’s brother’s best friend’s cousin who didn’t want to take her medications because a doctor told her to. 

I now very much understand the eye rolls mom. I get it. 

3. It’s so hard to be sympathetic to others, especially when they are messing with their own health or complaining about things you wish you could still be doing. 

I actually did have some level of experience with this prior to my MS diagnosis where mental health was concerned having had BPD for my entire life. But it has taken a new level now with the MS being introduced. I get so much more irritated with lazy people, people who don’t listen to what their doctors say and complain, or people who are sick but whom I have perceived as not taking it seriously and refusing to go to their doctors. More than one of my friends has met this new reaction and been shocked, and we’ve talked and had good conversation about it but it’s been so hard to temper my new found lack of sympathy to what their view on life and their reality is. 

I now get the struggle mom. I get it. 

It’s been so hard not to shout at my friends about things since I have gotten sick for doing stuff that would have annoyed me minorly before or that I’d have been totally fine with. (All the following scenarios are fictional names and exaggerated examples). 

I have more than once wanted to say things like, “I don’t want to hear about your latest dizzy spell Tina when I know for a fact you canceled your last neurology appointment because you didn’t feel like driving to Anchorage that day. If you’re that concerned about your brain then you should go to the doctor.”

“I don’t want to hear about your blood sugar Tammy when I know your doctor told you to stop eating sugar and change your diet and I know your over there having eaten half a cake in two days, aren’t taking your insulin.”

“I don’t want to hear about how tired you are Bob because you climbed a mountain yesterday and I got exhausted just getting out of bed.”

And my favorite: “I don’t want to hear about how much your job sucks right now. At least you’re working and making money and not having to fight with disability Tiffany or worrying about finding a new job that you can actually physically do.” 

I have to remind myself constantly now that their life reality is different then my own. Everyone is allowed to have feelings, make choices, express how they feel, and I need to care enough to show a little bit of sympathy. But I know why mom had the rule that you can’t complain unless you’re doing something about it and I know why sometimes when I had a cold as a child she was so unsympathetic. It’s hard to have sympathy for people when they are complaining and you’re dealing with some of the same stuff every day. When you have to change your diet, give up the monster energy drinks your addicted to and that are a comfort drink for you because they are making your tremors worse, thinking about your energy expenditure because just doing your chores is exhausting, and when your having to visit so many doctors even when you don’t want to because your brain is partially dead. 

4. You can’t just walk out the door without planning anymore. 

Speaking of energy expenditure, and fatigue, you can’t really just walk out the door anymore without thinking about what you might need for the day and bringing it with you. I used to get so annoyed by my mothers huge purse and all her stuff she’d haul with her everywhere but I get it now. Even grocery shopping nowadays is an ordeal and I have to feel out before going if I am going to want my cane, use the electric driving kart, or if I can walk. I need to feel out if I need my headphones to stop sensory overload, if I need a jacket because temperature regulation is hard. 

I understand the big bag now mom! I understand the meds in your purse and the carrying of the jackets, the cane even if you’re not using it at the moment, and the travel walker/wheel chair in the car. I get it! 

5. It becomes such a prevalent part of your reality that you think about it and talk about it all the time. 

There was a time where I felt like I wanted my mother to just shut up about her illnesses. More than once I have accused her of holding me hostage to her seizures or being selfish because she couldn’t help me, or have told her to just stop talking to me about her sicknesses because it was scary and I didn’t want to hear about it anymore. I have heard more than one of my extended family members and immediate family share the same sentiments of not wanting to hear my mother talk about her illness anymore because it’s “all she ever talks about” and “she’s using it to manipulate situations.” 

To that all I can say is mother I am so so so so sorry for ever feeling that way towards you. 

Yes, there are some people in the world who will use their illnesses to manipulate people and will make their illnesses their whole life. My mother is not one of those people, nor am I. 

But we are ill, our bodies are broken, and they are broken in such a way that it does affect every aspect of our lives every day down to the food we eat, when and how often we sleep, to the way we interact with people. There is no getting away from it, there are no breaks, there is nothing that we can do that will make us better for the long term. All we can get is temporary relief. 

Let me phrase it like this- Before modern medicine we would be dead. 

Period. 

We would have died. Slowly, painfully, tortuously. My body would have killed my brain. So much so that my doctor told me not to look up my condition because just a decade ago my condition was a death sentence. My mother would have had thyroid storms or her body would have torn her intestines apart and she’d have starved to death. 

We are alive and that is a miracle but it is not without its challenges and it is our reality. Every facet of every day is affected. 

When I use too many spoons, I feel it the moment I wake up. I know I am going to sleep all day that day or struggle with doing basic tasks. And if my loved ones ask me to do things on days like that I have to tell them no. When they argue with me or push me I have to tell them I am out of spoons and remind them of my reality. It’s not an excuse, it’s my life and the fact of my living.

I can get mad at mom all I want for making going out to restaurants a whole ordeal but her reality is that if she eats even a small amount of gluten on accident she is out of commission for several days and there is nothing she can do to get around that or stop that reality. That is her fact of life.

 When I get too emotional, stressed, tired, or drink too much caffeine in a day I tremor, hard. That is a fact of life for me and there is nothing I can do to change that. When I get tremors my life is affected. Walking is hard, typing is hard, and I get more fatigued and brain fogged. That is my life. 

When mom gets too upset, too little rest, and is too stressed she has pseudo seizures. That is just the truth of the matter. Sometimes we can’t fight unless we’re willing to deal with the seizures. It’s not manipulation, it is just fact. 

Yes, we talk about our illness a lot. Because we have to. It colors every part of every day in some way shape or form. 

It’s our life. 

I have learned a lot about myself and my mother since getting sick. 

Mom, I love you, I get it now, and I am sorry for every time I yelled at you for your reality. 

-Dare.