Vision problems and multiple sclerosis

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My eyesight has been giving me more and more trouble lately. When I wake up in the morning it takes me more time than usual to properly focus. I will prop myself up in bed and have to rub my eyes countless times just to see straight.

At that time of the day don’t expect me to be able to read a text message, email or anything else for that matter, without difficulties. If a text message is not responded to for more time than what was expected, don’t hold it against me. I will eventually get to it… by next year.

At the age of 12 I started wearing glasses and hated all the difficulties just trying to keep them clean or to not fog up in humid weather. Twenty years ago I got Lasik surgery to correct my vision. According to the Ophthalmologist, now my eyesight is 20/20. There’s a lesion in my brain that is causing me to have some blurred vision in my left eye but other than that, all is well there.

The problem for me is that the muscles in my eyes are weak and causing me to see a shadow beside each letter. It’s called double vision. It’s like a copy of the word is overlapping itself but slightly offset making a confusing mess. Even making the text display a larger scale helps to read clearer but doesn’t remedy the issue.

Just writing this post is cumbersome and takes more time than usual to complete. Of course I have become a hunt-and-peck typist unlike in my glory days where I could type over 75 words a minute. Between eyesight and numb fingers, I feel helpless with the internet.

And don’t even talk about telling me to use a speech to text app. The apps always misunderstand what I’m saying and interpreting it with a bunch of nonsense. Then once I correct the word errors, the punctuation takes extra steps to properly add. It’s a no win situation.

I have noticed when I’m watching TV I tend to close my left eye in order to view things clearer and to help keep me from getting dizzy. Yes, my eyesight makes me dizzy at times. Who wants to be on a rollercoaster ride while watching a movie? Not me! Thus the one eye method works. It’s like my eyes aren’t tracking exactly one with the other as they should.

My advice… relax and be grateful for whatever sight you have. Recognize the challenges that show up and look for the bright side through it all. Appreciate the adventures you may encounter along the way for there will be many.

Today I didn’t grieve for my health issues

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How many days do I get up in the morning and say “Maybe my hands will work for me to get dressed without difficulties. Maybe I can get through my morning without a bathroom mishap. Maybe the pain in my body is manageable and doesn’t interfere with my quality of life. Maybe multiple sclerosis will behave and allow me to run some much needed errands.”?

Sometimes feeling lonely overwhelms me. I have sensed a feeling of abandonment more times than I care to admit. Not because of anything in particular, but just because I find it’s not that easy to get some much needed help for everyday events like preparing a meal or cleaning the house.

Recently I have noticed that I get upset easier. I have been in arguments or quarrels for no reason at all. My emotions are just on edge and have a tendency to overwhelm me. I feel like people I used to count on have moved away from my life which in a way is something to be grateful for… but still unnerving. I don’t need complicated people to complicate my already chaotic life.

Today I didn’t grieve for my health issues… I looked at my life and was thankful for my doctor which I will be seeing later in the day hoping it’s a good appointment. I looked out at how hard the wind was blowing and was thankful that I have a roof over my head, heat in the house and food in the cupboard. That I have friends and some family members who love me and contact me just to see how I’m doing.

My back porch has been setup with comfortable seating to enjoy the warmer weather when it comes and it’s been cleaned… the spring cleaning way. It was a much needed job to get done. Family came by unexpectedly and helped me out. That was a much appreciated thing to have happen. How can I show my gratitude? I feel like just saying thank you to everyone in my life isn’t enough gratitude, but it is.

I can do acts of kindness. I can perhaps slip a card of encouragement to someone secretly that I know can use it. Often, many people I see just want to talk to someone. That doesn’t cost a penny. For the most part, my time is free to give. Maybe some people won’t understand how special those kinds of times are, but I do and will still cherish them.

Today, ask yourself what you have done lately to show your gratitude for the day? Sometimes all that’s needed is our attention and looking around just to notice what’s actually there. There’s always something. What are you grateful for?

 

 

You are a survivor

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Unlike many people, we’ve endured the diagnosis of multiple sclerosis. It’s a story some of you know very well. For me it was a quick process due to my MRI results and my prevalent loss of multiple bodily functions. But I know for others it was a long and arduous development with one appointment after another, yet nothing being found definitively sometimes for years.

Oh, the heartache. Oh, the worries. Oh, the concern of what is actually happening and when will it end. When the diagnosis takes place there is a moment of relief knowing that you aren’t going crazy. That there’s an answer to all your troubles.

Through it all, I have to say… you are a survivor. It took me a little bit of time to figure that out for myself. I was caught in such an out-of-control whirlwind that I couldn’t see anything around me that made sense anymore. But then I saw it. Hidden behind the appointments and around the newly discovered symptoms, there it was plain as day. I am a survivor. I’m not healed and as of today am not healed. But I have survived and each day I am surviving.

But why? That was the question I kept asking myself. Why have I survived? Why is this my life now?

I don’t know why I have lived through it. I don’t know how I have lived through it. But what I do know is that I have emerged stronger and with a clearer purpose. Whether you believe it’s God’s gift or just sheer luck… you have been given a second chance in life and I encourage you not to squander it or dwell on why you were chosen.

We make choices every day. Some are clear to make and some not so clear. But I believe we have been chosen to rebuild this MS community we find ourselves a part of as we rebuild ourselves. Some of us will rise to the challenge, other’s won’t. But we will all ultimately survive because we already have.

Let’s be honest. You’re a survivor.

I like how Lori Goodwin said it… “Even in times of trauma, we try to maintain a sense of normality until we no longer can. That, my friends, is called surviving. Not healing. We never become whole again … we are survivors. If you are here today… you are a survivor. But those of us who have made it thru hell and are still standing? We bare a different name: warriors.”

So fight on… my MS Warriors. Fight on!

Don’t ever apologize because you are hurting

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Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

With multiple sclerosis you can’t control your body

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When I was diagnosed with multiple sclerosis, I saw all the good happening in my life disappear as if a sinkhole opened up around me. Many of the things that I had planned was just washed away. As the days passed I saw my lifelong career finished, friendships lost, finances depleted, and any motivation I had to try and further my life began fading away.

It was replaced with an overwhelming amount of depression along with hopelessness, dread, and fear as my body stopped functioning due to loss of mobility, body tremors, numbness, urinary incontinence, pain, brain fog, relentless fatigue, vision difficulties, and speech problems. Whew, that’s more than I ever expected and it happens to change moment by moment. No day or hour is the same and new problems kept arising.

I didn’t see anything good happening in my life. As the days went by and my progression worsened, I was convinced my life was over.  Forget about that long list of problems and issues I now face, if you’re like me, if you don’t forget the symptoms you are experiencing you will forget how to pronounce them or what word to actually use to describe them.

But I have to say that regardless of MS, I found I can accomplish anything I set I mind to. I end up laughing at myself for my crazy brain fog moments and try my best to take each moment to pause and breathe.

I found that with hard work and determination I can do anything. I may do it differently than in the past but who cares what I look like or how it’s done. I sure don’t. MS has rid me of having to appear put together. I drool, fall down, drop things, and forget anything someone tells me, but all I can say is oh well and just keep going.

Like, I can deal with my blurred vision if I look through just my right eye and don’t try too hard to focus when in motion. That wouldn’t end well. Between blurred vision and loss of color clarity in one eye, every day is an adventure.

I can walk with parallel bars if I hold onto them even it’s only for 5 steps, but hey, it’s 5 steps… yeah! If only my world was surrounded by them and followed me with a chair to sit in every few steps I take, I would be able to go anywhere on foot. But I’m proud of my ability to function in my powerchair called an iLevel which gives me the ability to reach things that would normally be out of my reach affording me the opportunity to set up my kitchen and bathroom to use the upper cabinets without the hinderances I had before.

The numbness in my body has become something that doesn’t subside. Although it’s there constantly, it’s something I have be aware of due to possible injuries I may get with sharp objects and extreme temperatures. I have had my fair share of burning myself without realizing I’m touching something hot, so I deal with if mostly by not giving in to the frustrations that happen when I get a bit absent minded. I have had broken bones, burnt hands and deeply cut fingers all because of it, but they are my battle scars and I wear them proudly.

Now the tremors are one problem that is a bit more difficult to deal with. I had an issue just last night when I was heating up a bowl of noodles and in the process of placing the bowl on my lap, my right hand had a crazy spastic moment accompanied by tremors and the bowl went up and fell spilling everything on the floor as well as on me. Of course when those kinds of things happen I dread the clean up, but while cleaning up I just laugh at myself thinking, I knew that would happen… which of course I didn’t, but it has just become more possible than random and I again end up in laughter mixed with tears thinking “it could be worse”. Then I made a peanut butter sandwich.

When you are filled with anger and start questioning your existence. Wondering why MS happened in your life? Why you’re facing the challenges MS brings? I can tell you that you’re not a bad person. God doesn’t hate you. You are going to be okay. Really… you are.

With MS and all that it brings, you can live life to the fullest. Don’t dwell on the past. You can’t change anything that has happened to you and wishing that things were different doesn’t help anything. As you have probably noticed, with MS you can’t control anything including your body and what it will do next, but the lack of control forces you to look at what you do have and truly count your blessings.

The best thing of all, you can control your attitude. Having a positive attitude in a negative situation will strengthen you and give you the needed determination to go further than you thought. And do it with  gratitude. You can accomplish anything. I believe in you as we go forward (sideways) together.

I’m fighting a monster called multiple sclerosis

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I have learned more about myself than I ever thought possible because of a monster called multiple sclerosis.

I’m braver now even though I didn’t know MS existed in my life until I was in my 40’s. I fought through mind numbing pain, muscle weakness and tears. I fought it daily with a sword in my hand while yelling, “Hiyah!”.

I’m stronger now because I had to be. My choice was fight or give up, but I’m not a quitter. That’s just not a part of my DNA. So fight, I did. I learned how to use a cane, then a walker and now a wheelchair. I learned what foods benefit my body the most and what supplements help me to cope.

I’m happier now because I’ve discovered what really matters most in life. It’s crazy how that happens. You face down a beast like MS and discover a strength that you didn’t even know you had and that many things in life aren’t really that important anymore. Hold onto true friends and family, and let the other things go. You don’t need the extra baggage. It will only weigh you down and hold you back.

I stand taller, figuratively, because I am a survivor. Yes, there will be struggles and pain. There will be times I may be fearful of tomorrow or even of the next step I need to take, but I will push to the end and give it I’ve got.

Remember, you are not alone in this fight. The great Rocky Balboa said, “The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward.”

Come fight with me.