If you live in the United States, you probably just finished a few days worth of visiting with family & friends and filling up with yummy food. I hope you had a wonderful time! This time of year, as we close in on the holidays, it is common to find yourself thinking about what you are grateful for in your life. 2017 was full of changes and realizations for me. I wouldn’t change any of it, but what am I most grateful for?
More accurately, I’m so glad I was able to find the nerve to start blogging. Writing for my blog encouraged me to learn about blogging, different forms of social media, marketing a blog, video, and much more. It also drove me to look further into the types of self acceptance I want for myself. I’ve spent a lot of time this year examining who I am, why I do things, and how my thinking helps or hurts me. Although I haven’t written anything over the past few months, I’ve still been on my Twitter and Instagram accounts, and I love the people I’ve found there.
So, my blog as brought me knowledge, growth, and community. What’s not to love?
I’m very grateful to have doctors who listen to me and work to improve my life quality. While I still have daily pain, need to work around my dysautonomia, and deal with my anxiety and depression, it is so much better than it was last year. So many people have doctors who won’t listen to them and/or are satisfied with providing a low-level of care. My doctors have worked to find answers for me, and strive to be sure I am getting the care I need to have a good quality of life, not just the bare minimum to get by.
My husband of over 20 years is incredibly supportive. Anytime I have an interest I’d like to explore or expand on, he backs me. His support of me and this blog has been amazing. I can think of a few times I may have quit if it wasn’t for him. He believes in me more than I do half of the time, although I’m working on that.
In addition, the patience, understanding, and willingness to learn about my chronic illnesses that he shows is so appreciated. Dealing with this stuff can be really hard, and a supportive partner makes all the difference. He listens to me on my bad days, and we try to take full advantage of my good days. I’m really glad I have him with me on this journey.
As we head into the holiday season, I hope to get a lot more writing done. My goal is to post more often, but try to keep them short for now. Be sure to subscribe to stay updated!
It would be easy to think there is only loss when it comes to chronic illness. At first the losses are all you can focus on actually, but after some time it becomes possible to see what you have gained. I wanted to share my list of things I’ve learned from having a chronic illness.
When it comes to chronic illness, you don’t get to do much choosing. You don’t choose your illness. Your illness chooses your symptoms and severity. Many times you don’t even get to choose your doctor or treatment, your insurance (or lack of) does.
There usually isn’t anything you can do about this lack of choice. In such a case, the best thing you can do is acknowledge there is no choice and accept your situation.
I can’t change the fact I have fibromyalgia and my other illnesses. In accepting that, it relieves stress and helps me through the grieving for my old life. Accepting my old life is gone leaves me able to make new plans and not dwelling on what I can’t do.
Even bigger, I’ve found self-acceptance since becoming chronically ill. I’d like to think I still would have if I hadn’t become sick, but I’m not so sure. I’m pretty sure I would have kept being viciously critical of myself for not measuring up to ridiculous arbitrary standards. High standards are great, but you need to be able to love yourself where you are also. I think this is a lesson I only could have learned from having a chronic illness.
How to slow down
First, painful joints and muscles, and later the effects of my dysautonomia, made me slow down. My whole adult life I’ve walked one speed, and it wasn’t a stroll. This is indicative of how I’ve functioned in general. If I’m going to be doing something, I want to get to it and get it done. Now I have to make a concentrated effort to pace myself and go slowly. I’m not a dawdler, so this has been a hard lesson.
Having to take multiple breaks and plan less in a day was also not something I wanted to do, but it was a lesson I learned from having a chronic illness. Not listening to my body, not slowing down, meant an increase in symptoms and missing out on doing even more than if I had just adjusted my plans to begin with. So, I’ve accepted this lesson too and made myself slow down. A side benefit I greatly appreciate is the fact that I injure myself much less often now.
All that slowing down made me work on my patience too. No longer can I just push through and hurry up. I must take my time.
It took months to learn to be patient with myself. I’ve never been very good at it, and there was so much irritation with not being able to do my usual routine. Many tears were shed in anger and frustration, but I finally found the self-compassion and understanding I needed to be patient.
Another way patience has become important is that I’ve needed to give more chores over to my kids rather than do it all myself. Anyone who deals with children knows that is its own unique drain on your level of patience. I can’t just decide to take over and get it done my way. Careful instruction and calm correction is needed to teach them what needs to be done. Deep breathing comes in handy.
For 16 years I was the type of mother likely to put my kids before myself. It is not healthy to always do this. You deserve to be taken care of just like anyone else. While I had people telling me this, guilt always got in the way of any self-care I might try to practice. After I got sick, I had to learn to prioritize my self-care.
Now I make sure being a mother does not come before caring for my health. My kids come first as often as possible, but when I have a need that has to become a priority, I make sure it happens. Children are able to be wonderfully understanding, and it’s a good lesson for them too. For one, they are learning compassion, empathy, and how to care about someone. Also, I am teaching my kids that self-care is very important, and they should not short change themselves. Loving someone does not mean you need to sacrifice yourself.
Other things I’ve learned from having a chronic illness
These aren’t life lessons, but they are things I really don’t think I would have learned otherwise. Being sick, having to slow down, and finding more patience gave me the time and ability to learn loom knitting, crochet, journaling, and blogging, and that’s just so far. I’m sure I will keep learning things, because:
There is so much going on in the world and I don’t want to be left behind.
Learning new things just flat makes life more interesting.
I love taking a good look at my life and seeing where things are overall. Being able to see that I have gained so much, even as chronic illness has taken other things from me, is huge, and I’m glad I get to share that with you all here.
How about you? Are you able to see that you gained something positive from a negative event in your life? Please share in the comments below, or feel free to email me.
This pain relieving cream is my go-to. I love that there is no menthol in it, so it is safe to use on my hands with no worry about it getting into my eyes. Mobisyl works really well on most of my pains, reducing the amount of pain killers I need to use. This may not work for everyone as I’m sure many people have more severe pain than I do. To give you an idea though, when I was waiting on my surgery for the torn meniscus in my left knee, Mobisyl made a big difference in my comfort.
I rely on this lotion to help me with the leg cramps and muscle twitches caused by my fibromyalgia at night. After running out I decided I can never let that happen again. A few sleepless nights made that decision for me. I’m really glad it is available on Amazon Prime (a whole other favorite of mine).
I never want to be without my shower chair. It saves me so much energy that I need elsewhere. Thinking about getting one but hesitating? Stop putting it off, and just get one. I promise a shower chair is well worth it. Between the energy saved, and the security of not worrying about your balance, it is money well spent.
My hands don’t always grip very well, and sometimes my shoulders get stiff. This can make washing up a challenge. I bought quite a few different products before finally finding this one that I love. It is thin and easy to rinse, so I don’t need hand strength to rinse and squeeze it out. It is long and narrow (as you can see in the picture) so it makes it easier to wash my back. I can also either fold/wad it in my hand to make it easy to hold, or wrap it around my hand if I have no grip that day. There is an exfoliating version, but I bought this gentle style, so I can use it even when my skin is feeling extra sensitive.
These work like a fork and knife together. I love these because they are slightly thicker, so they are easier for me to hold. Knorks also make it possible for me to use one utensil to cut food when other forks would hurt my hand or make a knife necessary. You will still need a steak knife for steak maybe, but we regularly use only a knork on chicken, pork chops, etc.
The reviews on Amazon mention rusting. Ours have never rusted over the years, but they are around 10 years old so there is a chance the quality has changed. Personally, I’m thrilled with ours and hope to buy four more some day.
I bought this to use as a purse a couple years ago. From the moment I opened the package, I fell in love, and I haven’t changed my mind since. The adjustable strap design allows me to throw the bag over my shoulder, or across my chest depending on what is more comfortable that day.
These bags have a wonderful assortment of pockets, both open and zippered, for organizing your stuff. After a ton of deliberation, I decided on the small size. I need plenty of space, but I didn’t want to be able to overload it and make it too heavy either. Extra small would likely have been fine, since I do tend to accumulate enough in mine to get a bit heavy on my shoulder. It’s really nice having that space available just in case I end up out and about for a longer day.
As you can see, it carries a good amount. Here is the inside of the main compartment.
And here is everything that fits in each of those pockets.
This shows the outer zippered pocket and it’s contents.
The picture of the bag up top shows this zippered pocket. It’s large.
On the other side of the bag, there is another pocket that is just open with no closure. I usually stick my grocery list and phone in here. Sometimes my keys go in here, and other times I clip them on with my membership cards.
Finally, there is this nifty narrow, side zipped pocket on the opposite side from the main compartment zipper.
As you can see, my disability parking card and my key ring tuck way down into this pocket. You can hardly see it in there. I rarely need these things, but don’t want to be without them, so I keep them in this really cool compartment.
If I need to, I can still fit a water bottle and a couple of snacks into this bag. It will feel heavy, but it won’t be overstuffed for space. I seriously love this bag.
I bought a couple different types, and used my loom to knit up another pair. The set I linked to here are the softer of the two I bought. I really love this brand and definitely recommend them.
This is the pattern I used to loom knit my other faves. These are the ones I wear at night when my hands get cold. I also used this pattern to make Christmas gifts for many of the women in my life a couple of years ago. They are quick and easy to make. I almost forgot I knit a red set for my youngest. He uses them as gauntlets, and tells me they shoot fire. 😉
I actually have some more favorite spoonie products I could add to this list, but the post is pretty darn long already. So, I’ll end this here, and follow-up with another like it if you all are interested. 🙂
Body positivity can be extra tough when you are a spoonie. When your body doesn’t cooperate and you have to fight it all the time, it can be hard to believe that “all bodies are good bodies” or “there’s no wrong way to have a body”. In fact, for some of us it isn’t even true that our bodies are doing all they can to keep us alive! It’s pretty hard to be positive toward something actively trying to kill you.
So, how do you stay body positive as a spoonie? For one, it helps to refocus yourself on what you can do rather than what your body can’t do. Whatever limits you may have, there is still a list you can make of what is possible. Make that list, and see what you can do to add to it. Learn something new, take up a fun hobby, expand that list any way you can. As you see the list grow, it will help you find appreciation for what your body is capable of still.
Being self-conscious about weight is a common thing for people with chronic illnesses or mental health issues. People can’t control their weight the way they think they can. (linklink) Spoonies have even less control over it. Between illness symptoms, physical limits, and medicine side effects, weight gain and loss is pretty well out of our hands. Even eating “perfectly” (whatever that may be) and exercising all the time won’t give guaranteed results, so just do what you can to care for yourself, and then let the numbers go. There is no perfect weight, and your body has other concerns anyway. Stressing out by worrying about your weight is more harmful than just letting your body find its natural set point given what you are doing.
We are all told that we should get more exercise. Movement can help our bodies to feel better and help us to feel better about our bodies. There are many reasons a typical exercise routine isn’t reasonable for a spoonie. Some have conditions making them exercise intolerant (link, link), some have injuries or limitations for other reasons. There is usually some way to find movement you can enjoy though. I miss dancing. My P.O.T.S. doesn’t allow it without me getting very winded and light-headed now. So, I’ve adjusted my dancing to less movement or chair moves. There are many resources out there depending on your limits. A physical therapist can help you work something out too.
Some days are harder to me to stay body positive, when I focus on things I can’t do anymore. When finding new things to do isn’t enough, sometimes I rethink new ways to do what I’ve lost. Cooking is much harder for me now that I can’t stand as long. I really miss it sometimes, so now, on my good days, we have a chair in the kitchen I can sit on as I cook. I can’t garden like I used to, so we went smaller and have a few container plants now. Many things can be rethought and adjusted like that.
Just like most things for spoonies, body positivity is possible with adjustments. Do you have other challenges to body positivity you would like to see discussed? Please share in the comments!
I’ve previously been covering self-acceptance from a very general direction. I want to focus in a little more now. Personally, I have found self-acceptance extra hard due to my chronic illnesses and mental illnesses. It only makes sense that other people have the same problems, so I want to share my thoughts and solutions.
One struggle I have is accepting my limits. Whether you compare yourself to what society expects, or to what you could do “before”, it is hard to accept that you can’t just do whatever you “set your mind to”. Before I got sick, I knew that if I decided I was going to do something, it was going to happen. Now I find myself limited by pain and fatigue; if not by depression and anxiety.
I have found it important to accept that these things will happen. It isn’t my fault, and there is no reason for, or benefit to, me to blame myself. Just like the weather can mess with your outdoor plans, my illnesses and mental health can interrupt my daily plans. In accepting this, I can “go with the flow” more and not simply give up.
I used to base my worth on what I could do. My grades, my work, my housework, my caring for the kids, etc., all affected my self-esteem. Then I couldn’t do any of it. Brain fog took my “smarts”, and pain and fatigue took my ability to do housework and mother the way I had been. Anxiety never allowed me to work outside of the house for very long. I was left with nothing and felt I was worthless. My husband and kids showed me I was wrong.
They showed me, but this is true even without them. I am worthy, just by being me. The fact that I exist makes me worthy and valuable. This applies to everyone! You too are valuable and worthy just by existing. You don’t need to earn the right to like yourself.
Taking a Second Look at Limits
So, if we are worthy, just by being alive, our limits don’t take anything away from our value. Physical limits are just a line drawn by our body telling us where we need to stop. Respecting those limits are a part of self-care. Rather than fight them and suffering the consequences, most of the time we need to listen to our bodies.
Now, that isn’t to say never push the limits. Some things we may find “worth it”. An occasional special outing with friends or family can be worth feeling worse for a week or two. Repeatedly pushing ourselves will only worsen our health long-term though. You deserve to be treated better than that.
Our ideal may be being able to do everything for everyone each time, and then we feel guilt, anger, failure, etc when we can’t do it. Changing our outlook and seeing it as a way our loved ones can be there for us is helpful. We have a different situation that does not lead to the “typical” expectations. It is fine to expect a change from others, rather than them expect the same or “normal” from us.
This is where boundaries come in handy. Boundaries show others how to treat us. They are a line drawn in the sand. By setting boundaries, we let others know who we are, what we allow, and what is not tolerated.
Chronically ill people and those with mental health issues may have to be extra tough when it comes to boundaries. Healthy people do not always understand our limits and may forcefully push us to surpass them. We must be stubborn at enforcing those boundaries to care for ourselves. People in our life must understand that we mean business, and crossing our boundaries is not okay. They are just as valid as anyone else’s. So many times, people think that just because they don’t understand our various struggles, the struggles are not legitimate when that is the furthest thing from the truth.
Boundaries can be hard to set. If you need some help figuring out which ones to set, and how to do so, I prepared a free “Setting Boundaries Workbook” for you to download.
It is not your responsibility to convince anyone to respect your boundaries. You set the boundary, it is their place to accept it. Be firm, and your loved ones will catch on.
Rethinking Goals and Dreams
The last way I want to talk about limits has to do with goals and dreams. Having a chronic or mental illness can affect what dreams and goals are possible. That doesn’t mean you should give up on them though. you have a few possibilities. First it is possible that you can find a way to use modifications to make it happen. For instance, someone who wants to be an author, but loses the ability to type, can use voice recognition software to write still. If your dream job seems un-achievable, perhaps there is still something in the same or similar field that you can do.
I didn’t think there was any career available for me. Between high pain days, bad fatigue, and my depression or anxiety acting up, I’m not exactly the epitome of a reliable employee. This limits job/career choices quite a lot. Now, I didn’t have any certain job in mind to begin with. In fact, I chose to not go to college (and use my scholarship), because I didn’t have any goal in mind. Nothing has ever grabbed my attention.
After being diagnosed, it didn’t seem likely I would ever be employable. Well, maybe I’m not, but I’ve found a way to employ myself. Being a blogger allows me to work within my limits, and it is a way for me to help people, which I’ve always felt a pull toward. I share this personal bit to show how limits don’t have to limit you, but can actually open up previously unseen chances. To see how I work with my limits as a blogger, check out my monthly series, Confessions of a Chronically Ill Blogger.
There are a variety of ways that someone with either a chronic illness or mental health issues will find their journey to self-acceptance a different challenge than a healthy person. I’m going to stop here, but I’ll address other points soon.
Are there any particular concerns you would like me to write about? Let me know in the comments! You can email me anytime also at firstname.lastname@example.org .
“Pain is not a competition. Just because someone, somewhere may have had worse in their life, it doesn’t excuse or erase your pain.”
This quote has meant so much to me over the past couple of years. I feel it applies to everyone, no matter what kind of physical, mental, or emotional pain they may have.
Pain is pain
If you are affected by depression, anxiety, or any other mental illness, you may have a tendency to feel your condition isn’t as bad compared to other people. In fact, I had no idea how bad my depression had gotten this last time. I slowly got used to the “new normal” of each decline farther into depression, and compared myself to others who I saw as “worse off”. Given those goal posts, I just didn’t think my depression was that bad. People struggling with mental illness or emotional pain can also feel their struggles aren’t important because they are told so. Have you been told to suck it up, because others are worse off? The fact is, everyone’s feelings and thoughts matter. Even though there may be people worse off, it doesn’t negate your struggle.
People with chronic pain or illnesses find themselves in the same position. Their friends and/or family, not to mention society, are not very supportive. So many people in this position are demoralized by being told their pain isn’t enough. They are told to “suck it up” because someone else judges their condition to not be severe enough.
It isn’t an exclusive membership
As a member of both groups, I’m telling you that your pain counts even if you aren’t in either group. The only person you should ever compare yourself to is yourself. Even then, sometimes you should just focus on how you feel in the moment. If you think it is bad, then it is, and you should have compassion for yourself, and care for yourself.
This is why comparing pain can be so detrimental to your health. If it leads you to putting off care, that is a bad thing. Please don’t compare yourself to anyone else. Your health and happiness is important. It is just as important as the next person.
Do you have a quote that means a lot to you, or has gotten you through hard times? Please feel free to share in the comments. I would love to hear from you. ❤