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You are not imperfect because of multiple sclerosis

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All too often I hear people say they can’t do something because multiple sclerosis has caused their body to cease to function as it should. They see their body as imperfect because they are always doing something wrong. Their weakness keeps them from moving about as they need their body to function, their vision limits their ability to focus and maneuver their way throughout the day, their memory hinders their activities with failure to followthrough on much needed moments, and just showing up to an outing is too much work to handle so they decide to just stay home. That kind of life would wears on anyone.

I want you to know that you are not in this fight alone. Their are countless other MSers fighting along with you and leaving a trail of encouragement that will help keep you from being blindsided. We’ve got your back if you let us. I don’t know where I would be without such a great support system. It’s far better to try and fail than to never try at all.

I am reminded of a story about a woman who had two large pots, each hung on the ends of a pole which she carried across her neck. One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to her house, the cracked pot arrived only half full due to it leaking out.

For two years this went on daily, with the woman bringing home only one and a half pots of water. Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and felt miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, the cracked pot spoke to the woman. ‘I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house.’

The woman smiled, ‘Did you notice that there are flowers on your side of the path, but not on the other pot’s side? That’s because I have always known about your imperfection, so I planted flower seeds on your side of the path, and every day while we walked back, you watered them.’

‘For two years I have been able to pick these beautiful flowers to decorate my house. Without you being just the way you are, there would not be such beauty to fill my house.’

You are filling the world with much more than you think. Don’t underestimate who you are, what you can do even when limited, and how important you actually are. I just happen to think you are the bee’s knees!

Ready for surgery

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My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…

You deserve more and better things in your life

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You deserve more and better things in your life than you realize even though multiple sclerosis seems to have gotten in the way of you being able to achieve it. You have it within you to be the leader of your own life.

Take a moment and think about how your friends make you feel. Do they lift you up, or do they bring you down? If you feel bad about yourself after hanging out with a certain person, it may be time to say goodbye. Believe in yourself enough to put on your crown and hold your head high. You can’t wear your crown with your head down. Wrong friends will do that to you.

Learn to love yourself. There will be times you will have to apologize and forgive yourself for not being kind to YOU. Sad to say, you are your own worst enemy. Give yourself a pep talk by speaking positively to the situation. Words have power. If you keep thinking you’re a failure, that’s exactly what you’ll become. If you keep telling yourself you’re going to make it, you eventually will. That’s because our perception creates our reality.

Be kind to yourself. Never apologize for living your life your way. To expect no difficulties in life, whether through your own actions or sheer circumstances, is unrealistic. Difficult times happen. Allow yourself time to really look at your situations for what they are. Develop a habit of self-reflection. Try to quiet your mind and get rid of your biases first.

Do you speak to yourself by putting yourself down? Think about it…do you call yourself names out loud? Names like stupid, idiot, or worse? My mom used to say if you don’t have anything nice or useful to say, don’t say it. That includes how you speak to yourself. Try this: before you criticize yourself, think of 3 genuine compliments you can give instead. You’ll start feeling great about yourself. Try to talk to yourself like someone you love.

Prepare for a journey.

A sleep deprived life

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My body has a problem with sleep. Either I have an inability to fall asleep even though my body is screaming for a much needed time of rest or I fall asleep at the drop of a hat without warning. Seems contradictory doesn’t it?

I’ve been known to suddenly fall asleep when I have company over and we are in the middle of a great conversation. It can be 10 minutes into the time together, my eyes wide open and I wake up without knowledge of what happened. It’s not because the topic was boring, just my body had given up responding and snoring seemed to be the best option. I call those times sleep attacks. It’s as if I’m sleeping with my eyes open.

But then there are times when I find it difficult to fall asleep and stay asleep. That’s the insomnia part of my day. I can wake up in the morning not feeling rested no matter how much time I spent in bed. No amount of added sleep seems to be helpful.

In life today, it’s becoming harder and harder to calm the mind. We are over-stimulated and overworked, and we find less time to do the things we enjoy because of the things we have to do.

I know the feeling of exhaustion that goes deep down into your soul. It’s awful. Having experienced it yourself, your view of sleep will never be the same again. When sleep comes, it will bring with it waves of gratitude because you know how rare it is. Don’t be too proud to not talk to your doctor about it. There are some drugs that help along with some supplements. Each person will respond differently so don’t be discouraged when you find that nothing works for you.

For me, extra doses of melatonin doesn’t work neither do other sleep aids. I’ve tried them all. I seem to be lucky if I get 3 hours of sleep at night before my brain kicks into overdrive and won’t shut up.

I think my bedroom needs to be set up in my old college physics class. Nothing put my to sleep faster. How I passed the class I will never know. I have no idea what life lesson I learned spending time there.

For now, cling to hope that restful sleep will come. Be gentle with yourself and encouraged. This too shall pass. Your body just needs time to catch up.

If you feel like you’re just surviving, that is OK. You are doing enough and I have no doubt you are doing a great job at it. Know that you are not alone.

It will take you by surprise but suddenly life won’t seem like such a blur. I still wake up with a song in my heart grateful of the life I have whether sleep deprived or not. Take heart sleep is coming.

 

I’m Raising $500 for the annual website costs of Positive Living With MS. Any amount would be a tremendous blessing and give this blog further reach to people living with multiple sclerosis. Caregivers, family members and fellow MSers have always enjoyed reading my blog. Many say that they would miss me terribly if I would ever go away. That I am a light of hope and encouragement that helps get them through their day. I was diagnosed with PPMS myself in 2013. Most of my writing is about my own experiences. I try to mix in humor as well as the reality of what life is like living with MS.

Show your support by going to this link

 

Being thankful even with multiple sclerosis

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Being thankful when you’re hurting seems like an impossible thing to do. How in the world can anyone live a life of gratitude in the middle of a life of pain? You may be looking at everything happening in your life right now and thinking I’m crazy to even suggest such a thing. Being thankful with multiple sclerosis on top of everything else going on in life? Yeah, right!

When you look around all you see is pain and hard times. You can’t see anything worthy of thanks. Tears happen way more often than smiles. I get it. I understand how overwhelming and difficult it is to live a life of constant change and uncertainty.

Do this for me… take a moment, pause and look at your life. Look at everything you have come through over the years. You have faced circumstances that seemed impossible to others as well as yourself, but you made it through those times. You have walked through hell itself more than once. Most of those times you don’t want to relive, but as you look back you find things to give thanks for. After all, you endured and didn’t give up. The strength and wisdom you gained during those times are lessons worthy of thanks and gratitude.

Giving thanks when you’re hurting is something most people don’t want to do, just like most don’t want to go to the dentist for a root canal or start a new diet, but the rewards are worth it. You can’t give up hope and allow the weight of your current circumstances keep you from seeing that life is filled with more than just pain. It’s filled with beauty too.

Pain has a way of changing our lives for the good if we let it. It’s important to be thankful for the little things in life. What are you thankful for?

Let your life shine through the chaos of MS

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When multiple sclerosis became a part of my life, just trying to come to terms with such a life altering disease was difficult. I went through periods of denial, anger, depression, why-me moments, and finally acceptance. Acceptance was hard. I had to re-evaluate my entire life.

Whenever something goes wrong in life, the first thing we do is look for someone to blame. Sometimes it’s God, sometimes it’s the people around us, sometimes it’s the doctors, but deep inside we have a sense of regret thinking we caused it by our own life choices. The helplessness we feel makes it hard to accept things the way they are. It breaks our heart. Were we going to be able to make room for MS in our life?

A person’s life can become completely destroyed when MS shows up. It has this way of flipping our world on its head, spinning us around and around creating dizzying chaos and confusion, and then leaving us to figure things out… many times all on our own.

That kind of whirlwind hurts. Some people may only experienced a slight amount of discomfort while others are left holding pieces of a shattered mess in their hands. It breaks you down no matter how strong you thinks you are.

If you look really close at my life, you will see the cracks and missing pieces from some of the difficulties I have been through because of MS. Things like increased progression, having to use a wheelchair, needing help for things most of the world takes for granted, ending a much loved career, financial struggles, and losing friendships.

My last MRI gave me bad news which has altered my future plans. There is moderate periventricular white matter disease, central cerebral atrophy which has progressed, over 20 mainly pericallosal as well as periventricular old burnt-out plaques, and a whole bunch of doctor speak that I don’t quite understand.

What does all that mean? MS is the reason for my trouble in learning or remembering things, having difficulty with problem solving, slowed thinking, depression, balance issues, and the reason I have almost non-existent trunk control which means I fall over easily even while trying to sit up. I weeble wobble in my chair.

My MS difficulties are much more pronounce than I expected at this time in my life but I refuse to be defeated. Even with all the issues I now face, there is still beauty in my life that shines through all the confusion.

You may be in the middle of a relapse heart right now. I know how badly it can hurt, but you are going to get through this and your life is going to become a thing of beauty. Don’t stuff the pain down deep inside trying to hide it away. Let the emotions out as they happen heal. Out of sight, out of mind doesn’t actually work.

Let it all out so you can heal. It takes time, but it will happen. Be patient with yourself and take it slow. Your life is a beautiful thing. Give yourself time to handle what is going on then let your life shine through the chaos.

Multiple sclerosis explained by someone living with it

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Those long lists on medical sites that describe multiple sclerosis really don’t tell the full story. They list out symptoms that make MS sound no different than a vacation to the hospital for a broken toe. So here is MS according to someone who actually lives with it. Yes, there is humor in there somewhere. You just gotta laugh at MS or you will go crazy.

  1. FATIGUE

    Much like someone who has just hiked 20 miles up a steep hill after two days of no sleep while carrying a backpack loaded with rocks on the hottest day of the year… that is fatigue. It’s that moment when your legs can no longer hold you up and every muscle, bone, and even eyelid hurts. Then as soon as you sit down (or more like fall down) you are asleep. A tornado could blow by and you would sleep right through it.

  2. WALKING DIFFICULTIES

    No we aren’t drunk, but imagine those times when you have experienced being drunk yourself. You attempt to walk across the floor with full intentions of simply going from your chair to the door but end up walking into walls and tables instead.

  3. SPASTICITY

    A constant charlie horse in the legs is more like it, but sadly it’s not just in the legs. Any muscle can be affected. We also have a tendency to involuntarily twitch and kick without warning. So if you say something stupid and we hit you in the head…oops, we’re sorry. That was an involuntary spastic moment.

  4. NUMBNESS

    Do you remember a time when you were sitting on the floor with your legs crossed and your foot fell asleep? Now imagine living with that feeling every minute of the day, only it’s not just in your legs. Many of us have that very feeling in our arms, legs, face and body.

  5. VISION PROBLEMS

    We don’t enjoy seeing two of everything unless it’s chocolate, or not being able to read an email on the computer because the words are blurry. Many of us will lose color clarity as well. So, if we are wearing uncoordinated clothes, don’t laugh. We didn’t know we were wearing bright neon green.

  6. DIZZINESS & VERTIGO

    You know that feeling you get when you are sure you’ve entered an unknown universe for a split second because you stood up too fast? Everything goes blank and things in the room begin to move around? Yeah, we live there. Who needs an amusement park when we have a roller coaster in our heads everywhere we go. We can tilt our head a certain direction and we’re off on the most exhilarating ride of our life.

  7. BLADDER & BOWEL PROBLEMS

    Long bathroom lines are our enemy. We can’t hold it and will give you a reason to mop the floor if you don’t let us cut in line. We can go from the extreme of not being able to go, to “I gotta go NOW!” One positive in it all, if you ever need to know where the nearest bathroom is… just ask. We know the fastest escape route to every bathroom on the planet.

  8. COGNITIVE DIFFICULTIES

    We forget often: scheduled appointments, birthdays, someone’s name, words, phone numbers and even how to do something we’ve done for years. Multitasking is out of the question. And asking us to deal with a difficult situation that requires deep thought may be met with a blank stare because we simply can’t get our brain to work.

  9. PAIN

    Yes, we experience pain. Lots of it, too. It’s not pain like when someone is stepping on your foot either. We are in pain because our nerves are misfiring and sending incorrect signals to our brain. And just in case you were wondering, Tylenol doesn’t help. You have to stop the communication process, not the actual pain. Sadly, MS pain never gives us a day off or allows for a time-out.

  10. SWALLOWING PROBLEMS

    If you invite us over for dinner and offer us a deliciously cooked steak and we decline, choosing to eat a bowl of soup instead, don’t be offended. Sometimes the effort of chewing and then trying to swallow what we just chewed is difficult. It’s MS’s fault, not your cooking… although, if you met my neighbor you would have a different story to tell.

  11. HEAT & COLD INTOLERANCE

    Heat causes chaos to our already damaged nerves making our symptoms a hundred-trillion times worse than normal. Add humidity to the mix and it becomes an unbearable situation. The cold is just as bad for many of us. Someone once said that there’s a place where the temperature is perfect all year long. It’s called “My Imagination.” Have you heard of it?

  12. SPEECH PROBLEMS

    Aside from the long pauses we take as we search to remember words, our voice can sound weak, winded, choppy and soft. Many times people will ask us to speak up, and although we would like to and even try, we can’t seem to get the words out any louder. Drive-thru ordering can be comical…“So, you want lettuce and popcorn on your hamburger? Really?” Regardless, we have a lot of wisdom, so pause and take the time to hear it.

  13. EMOTIONAL CHANGES

    Mood swings are real and we have them more than we like to admit. We have been known to burst out laughing at the most inappropriate times, like when someone is sharing a sad story about how their pet fish died. We also cry for no reason, get angry faster than normal and become extremely frustrated at things that never frustrated us before. After all, our life has flipped upside down and we are living in a world we don’t understand anymore.

  14. ITCHING

    Oh, the terrors. Itch, itch, itch…scratch, scratch, scratch…and not one mosquito in sight. We probably look like a ninja contortionist as we uncontrollably scratch at different parts of our body without any visible reason, but when our skin itches we just want it to stop. We have been known to scratch our skin raw in the process.

  15. TREMORS

    No, we don’t have Parkinson’s Disease… although it does look similar. Our hands, head, and sometimes whole body, can go through bouts of uncontrollable shaking and we can’t make it stop. We would make a good breakfast chef if anyone’s hiring. When it comes to cooking scrambled eggs we could whisk those eggs to pure fluffiness.

  16. BREATHING PROBLEMS

    MS can cause muscle weakness in our respiratory muscles giving us one of the most uncomfortable hugs ever. The MS Hug feels like a boa constrictor has wrapped itself around our torso and refused to let go. Good news: we are still breathing. Bad news: we have yet to discover the secret to breathing fire. I blame my breathing difficulties on the fact that my dad took my nose when I was 3 years old and forgot to give it back.

  17. HEARING LOSS

    Hearing loss, fluttering sounds, and ringing in the ears can be frustrating. For many, it feels like water has been trapped in the ear muffling sounds. Between that and the ringing, we carry around our own heavy metal band in our head. Although, sometimes our lack of hearing can be voluntary due to people being ignorant and saying stupid things that we don’t want to regret responding to later.

  18. SEXUAL PROBLEMS

    Something people don’t like to talk about, but just because sex isn’t talked about doesn’t mean it’s not a problem. Numb body parts, disrupted nerve signals and emotional changes make intimacy 100 times more challenging. Lots of patience, understanding and care is needed. Well, that and maybe some chocolate, or bacon…or chocolate covered bacon.

  19. HEADACHES

    Our headaches can be caused by many things: medications, lack of sleep, damaged nerve receptors, depression, a bladder infection, steroids, stress, and of all things… annoying questions. “Have you taken an aspirin?” is not an appropriate question to ask us about our pain. Neither is a response telling us it’s all just in our head. Really? MS…in our head? Who would have thought?

  20. SEIZURES

    Not all seizures are the same. It’s possible for us to have the typical kind with uncontrollable jerking movements, but we can also experience lapses of consciousness without any movement at all, experience a “drop attack” where our legs turn to jello causing us to drop to the floor, and have moments when we appear to be wide awake but are completely non-responsive. Those are all considered types of seizures, not new dance moves.

How to handle living with multiple sclerosis

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We live in a world and society that is prone to complaining and arguing. Think about it… we are discontent with our jobs, our home, our TV, our car, our families, our life, even our health. For some people it is hard to find anything that they are content with.

We complain about our work schedule, forgetting an appointment, the doctor’s office wait time, prices at the store, our boss’ attitude, and other people always complaining. We seem to be discontent in just about everything.

When we meet others with multiple sclerosis we discover we have a common animosity. I went to a meeting with other MSers after I was diagnosis with MS and I felt like I was at an AA meeting…

Hi, I’m Penelope and I have MS…  then I spent the time complaining about my struggles along with everyone else. Complaining just seemed to be a part of the culture. We all complained and in our complaining we bonded together.  I noticed that bitterness and complaining was contagious. When I left I felt worse than when I arrived.

We live in a society not content with anything. We get a new phone that we are all excited about until a newer version comes out. Then we are back to being discontent. Our society works off discontentment. This world is so twisted.

I decided I was going to change that kind of thinking around me. I was going to choose to be thankful instead. Do you know what happened? Did my life get better? Did MS go away? Did my pain cease to exist?

NO.

But what happened was my life was happier and less stressful. I found the good around me that I had overlooked and missed out on. I found true friendship. I found support. I found I was able to do more than I thought I could. I found joy… all in my thankfulness.

Here in the USA it’s thanksgiving season… don’t spend it complaining. Allow yourself time to vent and to talk about the problems you are facing but once you let it all out… let it go. Share your complaint in a kind way that is seen as helpful and not critical. It’s so productive when we work together.

Complain less, live more. Your life is what you make it. Fill it with gratitude.

Dear MS… let’s breakup!

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Dear MS,

I don’t want you in my life any more. You are not my type of partner. You love junk food and I’d rather eat healthy. You prefer to make messes everywhere you go unlike me who hates being around that kind of living. I have a long list to mention but it’s of no use as we are not going to stay together. If you’re looking for a snack, here’s a warning for you…I covered my myelin with ghost pepper hot sauce so good luck with that. Happy munching.

I think we need to become better strangers. If I have to get a restraining order, I will. I’ll no longer take your abuse. I hope you enjoyed all the money you squeezed out of me because you won’t get another dime. Find someone else who is willing to drain their bank account to keep you happy. I never want to see you again. Don’t call me. Don’t text me. Don’t even mutter my name.

Goodbye and good riddance.

A recovering Multiple Sclerosis Warrior