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GoFundMe Support for Positive Living with MS

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I am Penelope Conway, the founder and writer of Positive Living with MS and I am raising money to cover the yearly costs for my website at GoFundMe.

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. One of my most popular posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with. My video is also a favorite which I plan to do more of this coming year.

I try to post on my blog once a week to talk about my own experiences with MS, and post daily on social media to facebook and X. I’m glad to be able to share my journey with everyone.

I 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.

I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with 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. Thank you in advance for your support.

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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!

Something bizarre happened to me

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Sometimes bizarre things happen with multiple sclerosis just because it exists. After all, we live with a strange, unpredictable disease that seems to have a mind of its own. At times I do things so strange that blaming it on MS isn’t even fair. Out of everything that has happened I blame my right hand for it all. My right hand is more of a paperweight than something of use anyway. Between tremors and weakness, it’s useless.

Some of the really strange things that happen need to be discussed more often so more people are aware of the challenges we face.  The strangest symptoms I’ve dealt with include:

  • Feeling as if an internal earthquake is taking place inside my body.
  • Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  • Feeling as if water is dripping on me when I’m no where near a faucet.
  • The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage or a boa constrictor that won’t let go.
  • Feeling as if food is stuck in my throat when I haven’t eaten anything.
  • Involuntary movements of my body like me accidentally kicking the doctor.
  • Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  • Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  • Feelings of dizziness and being off-balance which accompanies nausea.
  • Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  • Dealing with 3-D illusions like when an object is moving straight towards me but it appears to be swerving and shifting in its path.

I have also noticed a strange phenomenon since having MS. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same things don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my finger in the kitchen and after a month it has healed aside for a slightly puffiness. I’m just glad my hand is numb and I can’t feel any pain that is going on inside. It’s healing at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I take things for muscle spasms, pain, dizziness, help with sleeping, and temors. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself inter-muscular shots 3 times a week, similar to those taking Copaxone. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle that I’m glad ended when I stopped taking it. I would rather let MS progress naturally than feel miserable trying to medicate for a hopeful slower progression of MS.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat and the supplements they take, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and medications.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a puffy finger and a pimple on my chin to prove it happens.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing how crazy MS can be can help ease the burden, even if only for a little while. You got this.

How to Cope When Everything Keeps Changing

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I always say that living with multiple sclerosis changes normal (whatever that actually is) and everyone around me is finally getting a taste at having to find their new normal in the midst of the crazy world we live in. If someone could find normal for me and let me know where and what it is, I’d like to know so I wouldn’t have to spend so much time searching for it.

One great thing about the changes I have had to make is I get an opportunity to evaluate life a bit more closely and get rid of the toxic people and unnecessary things that were making life harder… without the added guilt. I know my life has gotten less complicated because of it and I like that.

Someone asked me, “How can you be positive surrounded by the mess happening in the world today?” Being a positive person while living with multiple sclerosis sounds like an impossibility. Is it even possible? Some would say it can’t be done. They would say that MS is so full of uncertainties, pain and complications that there is no way to face it with a positive attitude. But it can be done and is being done by thousands of people every day.

How can anyone keep a positive attitude while facing such hard times happening all around? Staying positive is not about hiding from the reality of what you are going through by trying to cover up the struggle in an attempt to keep the world from knowing it exists. MS exists. Hard times are real. Tears happen. No amount of covering it up is going to make it go away or lessen its troubles.

Being positive means that even though you are in the middle of the storm of all storms in life, you get out of bed in order to face a new day. Even when the pain has you doubled over in tears, you keep going. Even when your brain is foggy and your words are muddled, you give of yourself. Even when your life has spun out of control, you fight because you simply refuse to be defeated.

You are a fighter. Do you go through your day constantly complaining or do you try to find a small ray of light in the trial…a smile in the struggle? You can do this! You are doing this. I am so proud of you.

It’s alright to have negative thoughts when your path bends the wrong way or the unexpected happens. Don’t beat yourself up when negative feelings, thoughts, or words creep into your life. You haven’t done anything wrong. That’s just a part of being human. It’s okay to cry, to be afraid and get frustrated.

The challenge is to not let those negative things pull you down and hold you back from moving forward. Allow yourself to be real, to feel, cry, struggle and fight, yet still hang on to hope that today will be better than yesterday. Hope shows up when you need it the most. Hang onto hope. You got this.

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I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.
― C. JoyBell C.

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I know what it’s like to be chronically tired

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At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.

I spent the entire time awake through the yawns. I even tried counting sheep but they were no help. I think they actually went to sleep without me because at some point in the night I ran out of sheep to count. Now, here I am still awake at 5:30 AM watching the sun come up and wondering how I’m going to get through my already exhausting day.

Just so you know…

  • I know what it’s like to lie down in the bed at the end of the day only to watch the clock as the minutes tick by with each passing hour.
  • I know about those moments you ‘re about to drift off to sleep when your brain suddenly gets this weird burst of energy and decides to wake up and ponder everything ponderable.
  • I know the feeling of frustration and discouragement when MS seems to be winning the battle with sleep as muscle spasms, tremors and pain relentlessly pulse through your body.
  • I know what it’s like to not be able to sleep even with medications and supplements promoted to help you sleep.
  • I know what it’s like to drag yourself out of bed in the morning so exhausted, and with your muscles so tight, that you can’t move gracefully…or even at all.
  • I know how it feels to stumble into the kitchen to start your day when your entire body feels like you woke up with a hangover times ten.
  • I know how hard it is to put a smile on your face when you at greeted by a cheery “good morning” from your spouse, child or hungry dog.
  • I know what it’s like to think to yourself day in and day out, “If only I could sleep through the night, life would be so much better.”

I know what it’s like to be chronically tired.

I can’t promise you that you will ever feel completely rested when you get out of bed each morning even if you’ve slept through the night, but I can promise you that you will make it through your exhausting day… eventually, minute by minute, step by step.

Hang in there today. You’re doing great, even if you are too tired to see it. Living with multiple sclerosis is truly exhausting but you will make it through your day. Even though you don’t believe it, you will be stronger for it.

Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere. It’s going to be a good day. Cheer up. I just know it.

How I do it… living with multiple sclerosis

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When people ask me how I do it, how I get through my day living with multiple sclerosis? I’m not really sure how to respond. The best answer I have been able to come up with is, “I just do it.” I know that’s not a deeply profound response and Nike already has rights to the saying, but the question is not really something that can be answered.

MS invaded my life without my permission. It simply moved in and took over. It’s not something I can simply choose to no longer have around. If only it were that simple. To just say to MS, “Get lost.” Wouldn’t that be incredible? Only I would use some rather different words that might offend some people and would be sure to have a battle axe and a few hand grenades along with me too.

Since I can’t force MS out of my life, I have to learn to live with it. There’s no other choice. I can try ignoring it, but ignoring something screaming in my ear and chiseling away at my insides isn’t possible.

From the outside my invisible struggle doesn’t seem so bad to people. It actually looks quite easy. But if you could look inside my body and truly see what I am dealing with every day…Oh, my, what a different story you would have to tell.

If there was a picture window into my life, people would see that my Central Nervous System (CNS) looks much like the chaos after a storm has blown through town tearing up everything in sight. Some areas in my CNS have been damaged, others completely destroyed. The foundation is still there, but the pipes have burst and the electricity is out.

After a storm people work tirelessly to patch things up as best they can to try and get their house back working, but it will never be the same. There will always be remnants of the storm that came through and never a guarantee that another one won’t blow through again.

Today, I live in a pieced together body with duct taped wires, glued together pipes and heavily caulked walls. Things still leak, wires still get crossed and new storms still show up, but I “just do it.”

Elizabeth Taylor, who struggled daily due to lifelong chronic back pain, said it oh so well…“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and [gosh darn it], you refuse to let it get to you. You fight. You cry. You curse. Then you go about your business of living. That’s how I’ve done it. There’s no other way.”

We are living with a forever disease

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We live in a messed up world in a messed up body with a messed up disease, so when things get messed up around us…why are we so surprised? Don’t let the messes mess up your day. One thing to keep in mind is that we are living with multiple sclerosis, a forever disease, as crazy as that may seem.

There is nothing as of yet to rid the body of MS. Yes, you can manage the symptoms and sometimes even make them appear as though they don’t even exist. But don’t kid yourself. You still have MS even when it’s hidden. Be mindful of your body and what it’s telling you. Only you can hear it. Sometimes it will be annoyingly screaming at you to pay attention. Please stop and listen.

Growing up in a family of seven, we had our fair share of messes. I loved baking and would enter contests from time to time. As a ten year old I could make a killer lemon cake. It won me a blue ribbon more than once.

I was taught to clean up as you go. I had fun as I gathered all my ingredients; measured out what I needed; sifted, mixed, cracked, whipped, poured, and baked. The entire time I was also cleaning up, putting away, rinsing and washing to keep from having too big of a mess. By time the cake was in the oven, I was ready to watch it rise.

Now my oldest brother, that was a different story. You let him loose in the kitchen and it would turn out looking like a tornado hit it. He had no concept of order, he just had fun. He could make some amazing oatmeal cookies, scrambled eggs and even sirloin steaks, you just didn’t want to go in the kitchen afterwards. It was messier than messy. It was what I called confused chaos. It would take him time, but the kitchen would eventual get cleaned up and looking just as amazing as his food tasted.

We both had messes to face, we just chose our own way of dealing with them. I would tackle things bit by bit as they came along and he would wait to attack them all at once. We both had fun, we both had messes, but in the end we both had something amazing.

It bothers me when people come along trying to dictate how to live with MS as if the mess we find ourselves living in has a one stop, one way fix. What makes people think they’re the experts at living with a chronic illness just because it works for some, never for all? If I choose to follow a certain diet, something different than you…am I wrong, or are you wrong? If I choose to not take meds and you choose to take something…am I wrong, or are you? If I chose to visit a doctor and you chose to stay home, who’s right and who’s wrong?

Each person is different with different bodily makeup, different cell structures, different DNA, different problems, really different everything. What works for one won’t necessarily work for another. To be honest, one drug may harm a person as well as help another.

You see, we each have our own lives, our own messes, our own chaos and our own fun. No one is right or wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. It’s just that each of us deals with the mess in different ways.

Don’t let anyone make you feel bad because they chose something different than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this messed up life we have. Choose to find the smiles.

I was born a fighter

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I will never give up,
throw in the towel,
back down, quit or
wave the white flag of defeat.

I may not wear a cape,
have my initials emblazoned across my chest
or leap tall buildings in a single bound
but I do wear pajamas even on my good days
and fall faster than the speed of light.
Don’t judge, that’s just the tools I have to work with.

I’m a doctor without a diploma,
a professional freestyle tumbler and
a faux Oscar winning actor. Sh, don’t tell!

I forget appointments,
burn dinner,
avoid saunas,
laugh and cry unexpectedly,
create messes,
trip on air,
choke every time I swallow and
stumble over nothing at all.

I’m a hard working,
word searching,
body fighting,
bruise finding,
re-run watching,
wall holding,
floor catching,
numb walking,
stair falling,
ice vest wearing,
body slamming,
pillow hugging,
nap taking,
slow moving,
mountain climbing,
multiple sclerosis warrior.

Yes, that’s me.

Are you feeling better?

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The hardest and most difficult question for me to answer isn’t “Would it serve you well to trust people more than you do, or to be more careful of whom you trust?” Although that seems to be a simple question to answer, it’s still nowhere near as difficult of a question to respond to as being asked “Are you feeling better?”

I don’t know if people realize how difficult being asked such a question is for someone living with a chronic progressive illness. Am I feeling better than what? How I was feeling yesterday? Last year? Five minutes ago?

It’s not like I have the flu or a broken arm which mends over a short period of time. Multiple sclerosis is a chronic disease. That means it doesn’t go away just because I went to bed early, had a ten minute break at work, took two aspirin in the morning, or deny its existence.

MS is something I will have for the rest of my life. It causes physical limitations, weakness, debilitating fatigue, numbness, paralysis, constant emotional strain, cognitive problems and a whole host of other difficulties.

I am sick with a disease that, to this day, has no known cure and will only get worse as time passes. You see, my immune system is literally on a revenge attack against my own body causing chaos in my Central Nervous System. It is attacking the nerves throughout my brain and spine and eating them like they are hot wings at a tailgate party. It affects every part of who I am.

As of today, this disease is forever a part of my life no matter what you read from Dr. Google, hear from a friend or learn from a brochure at a doctor’s office. My hope is that one day things will change for the better and MS will become a thing of the past and each day scientist grow closer to finding ways to ease the pain we all face, but today isn’t that day.

I have moments when both the physical and emotional pain in my life are overwhelming. But I also have times when I can manage everything quite well as I hide my struggle behind a smile. I have been known to cry, scream and even question my own existence especially when I find myself being judged, stared at in public, and losing friendships all because of how MS is affecting me, my emotional makeup and my everyday functionality.

But regardless of everything I am going through…no matter what happens or how down I may feel…I keep fighting. Today I woke up in a war that seems to have no end. Imagine a life lived under continual sniper fire, surrounded by hidden landmines ready to explode with each step you take and hand grenades being thrown at you for no apparent reason.

Sometimes I am weak and can’t even find the strength or ability to think past simply knowing my name. Times when MS wins as it punches me in the stomach and takes my breath away. But even on my worst days when I feel so utterly useless and weak, I refuse to quit.

I may never “feel better” like so many people want me to, but this battle isn’t over no matter what the day brings and neither is my life. I am simply living it differently than most people. It’s a new day and I have a new chance to make a difference in this world. Each one of us do. Use today to show the world what real strength is and what true warriors look like. You are my hero. You are an MS Warrior!

A life with multiple sclerosis isn’t easy

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I have never climbed Mount Everest but it seems like every day I scale its twin. Somehow this twin of a mountain is in front of me as soon as I open my eyes to start the day. As the morning begins I am faced with a new climb in my journey with multiple sclerosis, sometimes even before I pull back the covers.

One day I may be staring at a gigantic wall of rock that seems impossible to scale and the next day my path may be a gently sloping hill of grass. I never know what part of the climb I will be facing until it is there in front of me. If I had my choice, I would pick the gently sloping hills every time. They make it much easier when I fall down. Those rocks hurt.

But no matter what I am facing, the thing I keep reminding myself with each forward motion I take is to never give up…even if I am on unsteady, shifting rocks. A life with MS isn’t easy no matter what you are dealing with, but at the end of the day I lay my head down on my pillow knowing that I did the best I could. That’s what really matters anyway, doing your best.

Today I have to have blood tests done to make sure my white blood cell counts are good, then I have a load of laundry to finish and my kitchen needs to be cleaned up. All things I would much rather avoid, but they’re not going to get done without my help. I also have yard work to do which I want to wait for the early morning hours when the temperature is cool and my body is more manageable. That may have to wait for tomorrow. I just need to make sure I pause enough so I don’t get to weak and useless.

If you are facing an overwhelming pile of work that needs to get done before the end of the day or are weary from the difficulties life has handed you, take a moment to pause in your climb. When your emotions are going bonkers, the pain becomes too much, your blurred vision is limiting your view…pause. When nothing seems to be going right and your hope of a better tomorrow seems to be fading fast…pause.

It doesn’t have to be a long pause, just enough time to catch your breath. No matter what you may think, pausing doesn’t mean you are giving up. It actually helps to give you the strength needed to keep going. Pause, but don’t quit.

You really do have the strength within you to keep climbing, to keep going. I hope you pause long enough to find the added strength you need today. You’ve got this.