I’m a nobody

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I’m a nobody. I’m just a gal with a laptop, a blog, an X account and a Facebook account. Nothing special.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS. I don’t make any money posting things online I just gain great new connections with people all around the world and learn a lot of cool things from them.

In addition to that…

I will use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective. If that’s not something you like, then I hope you find some other blog or page that helps you out better than mine. No feelings hurt here.

I love making my humorous meme’s and sharing my daily nonsense posts on social media. Some are received well, some with groans and others with huh? moments. But at least they get people talking and thinking. And on my blog I try to post once a week to talk about my own experiences with MS. I’m glad to be able to share my journey with you. One of my favorite posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with.

If you want to help me pay the bill to cover my hosting and blog costs you can donate online here:

DONATE

Any financial help is always a welcomed blessing for me as I no longer work due to the progression of MS in my body. I have trouble cognitively as well as will uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. I used to be a web developer and graphic designer so my skills came in handy to build the site and keep it running.

Each year around this time I let everyone know that in a few months the bill will be due. Any amount given will be used to cover the costs. This year the total is $600. The price went up about $50 from last year, but I’m determine to raise enough to cover all the costs with your help. Thank you in advance for your support. And happy thanksgiving to you as well.

———-

I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –
To tell one’s name – the livelong June –
To an admiring Bog!
– Emily Dickinson

 

There’s a flurry of weirdness going on in my brain

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When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I spent my night with a random flurry of weirdness going on in my brain. My thoughts had no reason and made no sense. I have an overactive brain that just won’t shut up especially when night comes. It just feels so uncomfortable having a torrent of random weird thoughts and questions hitting me every time I try to sleep. I have realized the questions are so odd that most of them are unsolvable.

To go with my busy brain, my body is filled with pain, dizziness, breathing difficulties, tossing and turning, and muscle spasms all disrupting my comfort. A night of sleep… I wish!

But did any of my night time questions or thoughts come to fruition? No. When this happens I pick up a notebook and pen to write everything down. I can guarantee you that when I read them later I’m always thinking omg, these thoughts are so irrational. What the heck is that all about. Then I just let it go. I don’t need any stressful thoughts to complicate my already complicated life.

And because I’m so tired even after a night in bed, the thought of having to get myself dressed and looking presentable in the morning wears me out. If it’s not messy hair, pajama pants and t-shirt doable, it’s too much work.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and multiple times of rest. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and extra time to stay in bed. My bed is my friend and keeps me company even in the middles of the day when I need fluffy pillows and moments of quiet. I like friends like that.

Why Does Your Brain Ask Weird Questions When You Can’t Sleep?

My body has limitations that aren’t negotiable

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Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!