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Patreon Launch

Friday, 30 March 2018
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3 more days until the launch!

The Inchworm

Tuesday, 27 March 2018

Left, right, up, down…some days I have no idea which way I am going.

I like to write about more than my illnesses but sometimes that’s what comes out along with the attendant emotions. I was reminded this morning by a friend to be gentle with myself about it. So that’s what I am going to do and just tell it like it is.

The last week has been tough. I am not getting out of the house much at all and I have been without 2 of my medicines. Not interacting with people on a more regular basis is a double-edged sword. I save spoons, but I also struggle because I feel very alone. That’s something that they never tell you when you are diagnosed with chronic illnesses. That if your illness is severe you will end up feeling isolated, a lot. You hear it from other people with chronic illness but part of you always thinks “That won’t be me.” I find that I often envy those who can still work and have active social lives. That used to be me and part of me really misses that. I miss being able to go to work every day and bring home a paycheck and then go out whenever I wanted to. Now days every plan is with the caveat “If I am feeling up to it.” I can push myself for special occasions if I am unwell but then I pay mightily on the back end.

Something I want others to understand when I say “no” to something is that it isn’t a value judgement on them or what they have asked me to come do. I want them to know that more than anything I want to be able to always say yes but the reality is that I can’t. I want them to know that it’s not just that I am “tired” and I can just come to whatever event it is and just sit. Yes, I am exhausted a lot of the time, but I hurt. Almost all my joints hurt all the time and then you add in the IBS and my needing to be near a bathroom that I may be stuck in for a while and it makes me not want to just go sit somewhere. By the time I drive wherever we are going I am often already almost out of energy and spoons. Then I have to drive back home, and we live in Atlanta so there’s nothing close to anything here.

Yes, I get wonderful love and energy when I do make it out and I wish that replaced all that I lose but it doesn’t always. I want people to know that I tear up and cry a lot more than they can know. Some of it is from the pain and a lot more of it is from the guilt that I feel for being a burden on our family. My medical expenses are debilitating even if I could work and without my working they are crippling us. So, I feel guilt like breathing and I feel shame for not being able to overcome and “just do it”.

Always #KeepMovingForward

Now the upside, because there must be one for me to get through each day. I aspire until I acquire, there is no faking it until I make it in this house! I work to #KeepMovingForward at all times. Some days I will take a few steps back, but I will make them up again and surpass those steps. There are days I don’t know if I am going left, right, up or down but I know my mission is to move forward whatever that looks like that day. Some days I get to dance a jig for my steps and those days are amazing!

I am blessed with a family of choice that rocks the house and love me right where I am at. I am thankful every single day for them. I hope I tell them this enough; I try to. I reach out every single day to at least one of them to tell them I love them. Most days I try to reach out to more than one, because it’s important to me that they know how much they rock my world just by being in it. I am grateful for the technology that helps me feel a little less alone by giving me multiple ways to reach out and connect with my family and other folks dealing with chronic illness throughout the world.

Jaxx demanding a morning walk.

I have beautiful, dorky and funny pets who help get me out of myself by demanding play time, cuddles and scritches and outdoor time.

I am beyond blessed with a partner who asks me “How can I help best?” instead of making me feel horrible for something I can’t help. Who comes home and hugs me tight every day and asks me how my day was even though I never left the house most of the time. He makes me feel loved and viable even when I struggle to do that for myself.

So yeah, put on the kettle and pour me a cup because life is tough. But you know what? At the end of each day I move forward on some level. It may not be physically, it may be emotional or spiritual. It may be a life revelation that I have been struggling with that finally comes clear to me. The important part to me is that I #KeepMovingForward even if only an inch at a time. Inchworms go far even if it’s just a little bit at a time.

Patreon Launching Soon!

Thursday, 22 March 2018

On April 2nd you will have the opportunity to check out our new Patreon page! Come check out all of the rewards that we have to offer for supporting Free Range Brain and helping us grow bigger and better with your patronage!

Not familiar with Patreon? Check out their explanation video!

The Struggle IS Real

Wednesday, 21 March 2018

I was talking to a very close friend recently about why I hate to tell people when I am struggling with something or something is “wrong”. My reaction to their reactions is difficult for me. Many times people’s reactions are something along the lines of “Oh my gosh! I am so sorry!” or “Wow! I am sorry you are suffering so much!” etc.

I think I was really born in the Midwest and somehow switched at birth to the South. I have this severe reticence when it comes to anyone expressing concern in my direction. I want to run and hide, I want to assure the person/people that it’s really ok, there is no reason for them to be distressed on my account. There are plenty of people out there who are really suffering. Yes, I am (at least currently) experiencing what I consider to be a decent amount of pain and discomfort most days but I don’t think I am “suffering”.

I was informed by my friend that this is not some zero sum thing. That just because there are others suffering more than me doesn’t negate what I am going through or mean that people can’t care about me. I guess a lot of it boils down to point of view for me and the fact that I am a severe literalist. When I think “suffering” I think damn near dying. However, I digress.

The point of this is about my reaction to the reactions of others. I am distinctly uncomfortable when others are troubled by something that is going on with me. Therefore I tend to not tell people things that are bothersome to most. The people who are very close to me eventually get it out of me. To say I play things close to the vest would be a bit of an understatement. I never realized until last year how true that was actually.

I tend to think of myself as kind of an open book honestly. Why? Well, because if you ask me a question about myself I generally will answer it. However, I don’t go around blowing my own horn all the time. The idea of posting something on here that told very intimate details of my life totally weirds me out. Though others see my postings as intimate, which on some level they are, but not the daily minutiae that I consider to be the very intimate details of life. I am simultaneously a bit fascinated and weirded out when others can do it.

So, I have finally learned to take compliments with grace. Apparently now I have to learn to figure out how to not run and hide, whether physically, mentally or emotionally when people react when they find out about what is going on with me. Well, at least life is never boring and there are always new lessons to learn!

 

#KeepMovingForward

Tuesday, 13 March 2018

 

I started this funny little thing at the end of 2017 where I would take a picture of my feet in the doctor’s office and post how I was feeling or whatever was going on. Then I started to think about how doing that was showing I was moving forward and doing things even when I didn’t necessarily feel well or didn’t have any spoons. That’s where #KeepMovingForward came from. I wanted to encourage myself to keep kicking and anyone else who needs that encouragement when they are struggling.

I use a variety of techniques to get through the tough days; music, matcha, naps, warm shower, cartoons, reading and pure bullheadedness some days. Then there are the days where I can’t get out of bed for very long. Those are the days I hold onto the wall just to be able to get to the bathroom, that I barely eat and just have to rest. Those are the days where I don’t feel like a person anymore; I am just a body that can’t work, play when it wants to or have the freedom it craves.

Chronic illness and pain saps the very life from us but continuing to plunge forward is how we make it through each day. And that’s not to say that every day is just “getting through” some days are outright sprints to the finish line where we win the race. However, for many of us we have to fight and persevere to get done what seems simple to those who don’t suffer with chronic illness and pain. Not saying that as a pity party line but simple fact. This is why I wanted to keep encouraging myself to keep kicking and moving forward.

A friend picked up on the #KeepMovingForward hashtag when I explained to her what it means to me. She said that it is a message that many folks who are struggling need to hear. Then she started posting pictures of her feet in different places with the hashtag! I got a little weepy when I saw the first picture and then I giggled. So often I know that my conditions make me feel isolated and alone. I want to connect with others who have my conditions or who have chronic illness so that we can support one another. I have joined a few sites looking to connect with others and I go to support group once a month when I feel up to it. So that moment when I saw that my quirky little project had touched something in my friend and it resonated with her was a bright star in my early morning.

Keep reaching out, keep kicking, keep supporting one another…keep moving forward!

#KeepMovingForward

The Purple Pirates are Walking to End Lupus!

Friday, 9 March 2018

Many of you know that I was diagnosed a few years back with Systemic Lupus Erythematosus after being bounced around doctors for 5+ years of them trying to figure out what was wrong. This illness has derailed much of my life and I battle it daily. I am a warrior and will not stop fighting and I am also a pirate who loves a good battle. And this battle is personal and worth it!

Will you make a donation to help me reach my personal fundraising goal of $1000 and support the Foundation’s efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $50 can make a definite impact.

What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts!

There’s even still spots left on the Purple Pirates walk team; come join us and help us raise even more! You can link to join the team in the donation link above.

Did you know?

* Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
* Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
* While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
* Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.

Together, we can solve the cruel mystery of lupus. Thank you for your generosity!

Love to you all!
Mags

The ADHD Monster

Tuesday, 6 March 2018

I have ADHD and have had it since I was a kid. Sometimes my meds work well. Sometimes they don’t. There is no cure for this and pills help but they don’t solve the problem. I am prone to struggling in areas with a lot of visual and auditory stimuli. I have done therapy, group therapy, Cognitive Behavioral Therapy (CBT), psychoeducation and more through the years to learn to live with my ADHD and to control as much as I can. I know I am personally responsible for my actions and reactions. Sometimes I need help though and there are times I am just stuck with what my brain is doing to me. Some days it feels like a monster hovering on my shoulder always there ready to jump in and wreak havoc.

ADD and ADHD aren’t just that people can’t focus on a task or are hyper. Here are just a few of the things that people with ADHD deal with daily. Behaviorally they can experience: aggression, excitability, fidgeting, hyperactivity, impulsivity, irritability, lack of restraint, or persistent repetition of words or actions. Cognitively people can have: absent-mindedness, difficulty focusing, forgetfulness, repetition of words, hyper-attention, or short attention span. They can also experience mood swings. Some people don’t develop ADD/ADHD until they are adults, did you know that? And that’s just the tip of the iceberg folks.

I work hard every single day to not let my ADHD cause issues with others. Sadly, sometimes it just happens. I know I can talk, bounce my leg or fidget a lot when I am overstimulated. Believe me when I say that it pains me way more than you can even know once I realize I am doing it. Often, I don’t realize I am doing it until it’s pointed out to me. It is so annoying to me not being able to stop it at times you guys. I deal with it every single day as do my spouse and our roommate. It’s annoying when it happens, I really do get it.

So, why am I writing this? It’s to ask you to help me and others out. When we are bouncing our leg, talking too much, fidgeting, etc. and it annoys you; don’t treat us like an obnoxious kid. We are not kids. We are adults who have a real mental, medical issue. Please speak gently to us, pull us aside, text us if you don’t want to say anything in front of others. But by all that is holy, please don’t yell at us, call us out in front of a huge group, etc. like we are naughty children because we are not. If you spend enough time with one of us that it can be a real issue, let’s try and come up with a hand signal or something that you can give us that will help us realize what we are doing without embarrassing us. Perhaps talk to us when we are having a good day and ask us what it is like for us living with ADD and ADHD. Understanding what someone else is walking through can help with having compassion for them.

I can tell you that when people yell at me or treat me like a naughty kid it makes me feel terrible and not wanted wherever I am. It makes me want to get up and leave the event, dinner, group, or whatever and not come back. It is embarrassing to be treated in such a way as an adult, by other adults. Many others who I have talked to with ADD and ADHD feel this way as well. I get it, it’s annoying but please try to have some compassion for those of us struggling with our own brains on a daily basis. Many of us try very hard to mitigate how our disorder affects those around us that we love and care about and even just the people we meet on the street every day. Please try to extend us the courtesy that we work very hard to extend to all of you whether you know it or not.