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.

Today I choose to focus on the positive

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I woke up early this morning… a usual for me. I do good if I get 4 hours of sleep each night. Between pain management and muscle spasms, I end up tossing and turning more than actually sleeping.

This morning I was feeling a bit down so I decided I would get dressed and head over to the local coffee shop. It always brightens my morning sitting in the shop listening to the hustle and bustle of the workers making drinks and serving people. Between the hissing and spewing of the machines, the wonderful smells of fresh roasted coffee beans, the chatter of the customers, and the rustling of chairs across the floor, it is oddly a great way to begin my day.

When you sit in public like this, you get the chance to listen in on all kinds of conversations. It’s not eaves dropping. When someone is talking loudly, you have all rights to listen in… besides, it’s not like you have any other options.

So far this morning, most of the conversations I have heard have been negatively focused. I have heard about a tyrant boss, a neighbors incessantly barking dog, many political woes, and relationship problems. Have you noticed the world has a negative slant on just about everything? Turn on the news if you don’t believe me. Almost all of it is bad.

In a world where violence, injustice, and despair seem to be everywhere, it becomes easier to expect bad outcomes rather than good ones. Sadly we hear so much negative talk throughout our day, it’s no wonder we find ourselves following suit.

So today… today, I am choosing to find positive things to focus on and remain hopeful that better days are coming. For one, I woke up this morning. Yeah! That’s amazing already. Now add to that the barista at the coffee shop knows my name and had my drink ready for me when she saw me coming. That’s pretty awesome too if you ask me. So that’s already two wonderful things this morning that I can talk about.

Then there’s the fact that I get to see the sunrise since I got up so early, I get to meet new people, give away a smile to someone needing a bit of cheeriness to begin their day, and of course enjoy a hot cup of coffee to begin mine. All those things make my heart happy.

I could focus on the vertigo and blurred vision I’m fighting through as I type this, the pain in my legs and feet that never seems to stop, and the tremor in my right hand that’s making it hard for me to type or even hold a cup of coffee, but what good will that do?

Here’s how you focus on the good…

1. Practice gratitude
Identify things to be grateful for.

2. See the good in others
Seeking the good in others broadens your perspective to understand those who may not necessarily share the same views or values.

3. Surround yourself with positive people
Studies find that those who surround themselves with happy people are more likely to be happy themselves.

4. Seek out good news and stories
Consuming uplifting content is a good antidote to all the negative events happening around you or directly to you.

5. Recognize your good qualities
Commend yourself for your good deeds and acts of kindness no matter how small.

6. Live in the present
Our dwelling on past painful experiences and our anxieties about the future often get in the way of focusing on living in the present.

There’s always something good to find in your day, you just have to choose to find it. Instead of pointing out all the bad things happening around you, find something that shines a light through the darkness. Even with the chaos that surrounds you there is something good in your day today. What are the good things surrounding you?

 

I always say MS is a disease that keeps on taking

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Have you ever wondered if someone else has the same outlook as you regarding multiple sclerosis and all the troubles it brings to your life? Does someone think the same thoughts as you? Or maybe you look at your life and decide you’re all alone in your opinions about life with MS. Voicing a thought that’s contrary to popular opinion can be funny at its best, or terrifying and nerve-wracking at its worst. But having an unpopular opinion that goes against the status quo may not be as uncommon as you think. You just may be the only one brave enough to say it.

Many people don’t like talking about how much a person’s life changes when a diagnosis of MS comes along or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Just because people aren’t talking about it or choose to hide their struggle, doesn’t mean it’s not real.

Suicide rates among those living with MS are twice as high as those of the general population. The reason? Because our symptoms continually progress (meaning they keep getting worse) making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and a lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day life, and as time passes they seem to only worsen.

It’s kind of like watching a grape slowly withering on the vine even though it’s given plenty of water, sunshine and care. We experience changes in our body and feel them with such intensity that it’s hard to even put our disease progression into words. We can actually feel the numbness, pain and difficulties creeping up our legs, arms and entire body to where one day it may just be our big toe that we can’t feel and the next it’s our entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up emotions. All we want is to fit in, get our life back, and live that carefree life that MS stole from us. I always say MS is the disease that keeps on taking.

Who wouldn’t get depressed knowing that their body was destructing from the inside, out? Sometimes it’s easy to face the struggle, but many days it’s a battle between sanity and trying to hold onto our dreams. It’s when those dreams begin to fade and all we have left is the pain and confusion, that’s when the tears begin to flow and depression rears its ugly head.

You see our smiles, hear our laughter and admire our strength, but in actuality we know those things are only hiding the pain… both the emotional and physical pain.

If you are having a wonderful day, please don’t criticize someone who isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to people for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to talk with a counselor or psychologist. There’s nothing wrong with needing help with your inner struggle. We all have them. It’s just sometimes easier to face the pain with someone else’s help than trying to do it all alone.

Don’t give in to this relentless disease. We are all here for you, standing with you, reaching out in our own kind of way to help. We may not be perfect, life may be a mess, but you are loved, cherished, needed and oh so wonderful.

Life may not have turned out the way you expected, but you have a story to share that can help countless of people cope with the unplanned and unexpected. Talk about what’s going on. Help others see that the struggle is real. It’s time to let go of holding on so tightly to a life that once was. Let go and come dance with me.
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If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry

Once diagnosed with MS, you find out who your real friends are

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Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

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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