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.

Bladder issues with multiple sclerosis

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I have had an SPC (suprapubic catheter) for over 7 years now. It’s a device that is surgically inserted into the bladder to drain urine because I can’t properly urinate on my own. At the beginning of my multiple sclerosis journey I was having problems being able to void my bladder. I lost muscle control which caused me a lot of problems. My MRI showed lesions on my spine where the bladder is controlled. They cut off my ability to use my bladder muscles.

I used to say my bladder was conspiring against me because as soon as I would get home from work and opened the front door, my bladder would let loose and I would have a puddle in my entryway to clean up along with myself. When the urologist suggested an SPC I thought that was the answer to my problems. That is until I discovered some issues with living with an SPC. No one tells you about that.

What I discovered is that sometime the catheter doesn’t drain properly because of bladder stone, increased sediment in the bladder, unwelcome UTI’s and of all things, a faulty catheter. Yesterday I called home health because my catheter was clogged and wouldn’t drain. Every time I drank something, within 15 minutes I was uncontrollably peeing on myself meaning the catheter wasn’t draining as it should. I had a load of laundry after two days of fighting with the clog.

When the nurse came to change my catheter I was so glad because I needed my coffee. It’s crazy how that was my main thought. Not the problem with cleaning things up constantly or running out of clean clothes or even a clogged catheter, but coffee. As I’m writing this I’m enjoying a fresh cup of coffee. Ah, yum! I’m glad a catheter change worked.

If you would have told me MS had this kind of trouble I wouldn’t have believed you. I thought a catheter was a good thing, but I have noticed it can be a blessing and a curse. That’s true for a lot of MS symptoms. I always thought my tremors were a curse but I discovered that when I uncontrollably kick someone or slap someone that says something stupid, I can blame it on MS. Oops… sorry, that was a spastic moment.

Or when I forget an important event that I really wasn’t interested in. Oops… sorry, my brain doesn’t work right and I forgot. (grin)

Or when I can’t remember a show that I previously watched… that’s just my reason to watch it again and be surprised at the outcome.

There’s always a way to look at things differently. Don’t take a life with MS too seriously. Besides smiling is a lot better than a frown. It helps your immune system to function more effectively. It is thought that when you smile, your immune function improves because you are more relaxed. So smile! It does a body good.

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

 

Housing decisions while living with multiple sclerosis

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What do you do when your neurologist suggests that you move to an assisted living facility because your safety is more important at this stage with your multiple sclerosis progression? You don’t want to wind up in the hospital with a broken hip all because you fell and no one was around to help since you live alone.

What do you do when making meals becomes too difficult so you choose a bowl of cereal over making a well balanced meal? How about when taking a shower is more complicated because your hands won’t co-operate when you try to wash your hair or rinse the suds off your body after you lathered the soap. Or when getting dressed in the morning is such a chore that you decide to stay in your PJs the entire day. If you’re in anything else people that see you want to know why you are so dressed up even when wearing jeans and a t-shirt.

I’ve looked into the assisted living facilities where I live and the costs start at about $3,700+ a month which is not affordable for me and my insurance won’t cover the cost. I’m not on a government run program which would make it a little more affordable. I have Medicare and private supplemental insurance which thankfully covers all my medical bills to date but not long-term assisted care. There are limited long-term care housing that they cover.

I spent the weekend contemplating all of my options and of course I don’t want to lose my independence so I decided that I will hold onto my own home until I am no longer able to care for myself. It’s already wheelchair accessible and meets all my current needs. There are still some things that need to be improved on around me but for me it’s home. And besides the people in the assisted care facilities are much older than me so that’s another issue that I don’t think the facilities take into consideration. I’ve heard horror stories of younger people not fitting in and being miserable without people their own age around.

In-home care is much more doable but will still require help in paying the bill, but if I budget it correctly I can at least get someone to help me with bathing, meal preparations and housekeeping a couple of times a week. My current SSDI pays my monthly bills with little left over for anything else.

Thankfully a nurse comes to see me once a month to change my urinary catheter and I have access to the organization for weekly physical therapy and speech therapy in my home. I had put PT on hold but now that the weather is getting colder I am going to ask to start PT for my legs and hands. They always work to keep my muscles moving and help me to stretch my muscles which I need much more in colder weather anyway.

I decided that when my family is gone and I don’t have their support around me, I will sell my house and move to a retirement community. This way I won’t have to do any yard work, home repairs, meal preparations or housekeeping and there will be others around to do things with so I’m not isolated. I will still have my freedom to live the way that I want and hire in-home care to help when needed. That’s still a far away goal but one that I’m comfortable with.

None of those things may happen but I’m prepared mentally if they do. My goal is to live my life enjoying each day that I am given whether I’m weak and frail or full of energy and purpose. You always have a choice in how to live your life. Always expect the best to happen and do your best in every situation.

The constant motion of our lives means looking ahead, thinking through, making plans, and continuously checking off to-do list boxes. It means being one step ahead of something you can’t really know, planning for things without all the details and making decisions based on incomplete information. Each day with MS is an adventure in a world of uncertainties. MS may be taking away my ability to do everyday things but it won’t take my will to live the best life that I have.