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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.

MS symptoms are more faithful than friends

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People thought my life was amazing. That I had it all: talent, creativity, love, a great job, a sense of humor, everything I could wish for, but you know, I realized early on that the fairy tale life wasn’t what I was looking for. I knew it wasn’t what it was cracked up to be and it wasn’t my dream… and that was okay with me.

But then multiple sclerosis showed up to try and put a kink in it all, it tried its best to steal my life, my joy, and any hope I had for my future. At first I have to say it did a pretty good job at it. It sent me into a tailspin and overwhelmed me at every turn I made.

I found out fairly quickly that it’s okay to be scared. It’s okay to cry, to be sad, to fall apart, and to break down. You’re only human. You’re real and facing something realer than real. MS is not something we can just ignore or wish away. We have to face it and look at all our options. Some may be unreachable or too expensive but through a lot of research and reaching out to different people, organizations and foundations, there’s a way to get help if you stay persistent. You just can’t give up hope.

Doctors scared me with all the unknown that was happening in my body and how much was still unclear about a disease that has been around for hundreds of years. Not until recently has any actual new info been discovered and realized about MS. For years many people have suffered and still deal from symptoms that newly diagnosed patients  are able to manage with a simple treatment or supplement. Still no cure… but there’s hope.

You never know when a symptom will show up and decide to hang out with you. Sometimes they are more faithful than your friends. Many people stop coming around when the going gets tough. Friends come and go. It happens all the time. It’s not because of you, you didn’t do anything to warrant that kind of treatment. You deserve so much better, so much more.

You don’t have to try to be strong when you have no strength to hold onto. It may take some time to make sense of all the confusing thoughts you have and all that you have experienced, but don’t ever stop fighting.

Statistics show my life will be shorter because of MS, but there is no knowing what tomorrow may bring or what my life expectancy will actually be. MS hasn’t put a period at the end of anything in my life. I’m believing for a comma. A comma means there’s a pause ahead with more to come, more to tell, and so on, and on, and on.

Enjoy the life you have. There is still beauty in the world. Look really close and you will see it in the most unlikely of places. Wipe away those tears and hold your head high today. You have a future filled with amazing possibilities.

What people with MS would love to hear

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It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

A message to the disabled with MS

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What I have to say is by no means groundbreaking but as someone who lives with sight loss, bladder disfunction, the inability to walk, and unpredictable tremors, I have a good idea of what a life with a disability can bring. There are certain things that I could have benefited from hearing myself in order to feel less alone.

Having a disability can introduce a unique set of challenges that you have to go through and some you never even imagined you would be dealing with. Whether you’re living with a disability yourself or if you know of someone living with a disability, perhaps reading on their behalf, whoever you are, I hope you can benefit in some way from what I have to say.

1. YOU ARE NOT A BURDEN

There have been many occasions when I felt like a burden. I would feel like I was a pain when I asked someone to help me out. At times I thought my impairments were an inconvenience for others, but looking back now, I know they are not and I want others to know that as well. There are many ways of adapting these days and there are so many people out there who are willing to help. You will never be a burden.

2. IT’S OK TO FEEL LIKE GIVING UP

Having a disability can leave some people feeling anxious, broken, lonely, isolated and scared. I say this because I’ve felt all of them for myself and they have made me feel like giving up. Having a disability can be a long and tough journey which requires a lot of adapting and I know of so many people connected to disabilities in some way who have felt like giving up.

I want you to know that feeling like this is ok. It’s normal, but if it gets too much, it’s important to seek help. Once I started to realize that the positives were coming closer to my reach, I learned how powerful they can be – there’s always a glimpse of positivity even when you least expect it.

3. DON’T BE AFRAID TO ASK FOR HELP

Asking for help is one of the best things you can do, if only my stubborn self realized the benefits of it sooner. I had a great lack of confidence which left me struggling with some thing because I didn’t want to ask for help.

Please don’t struggle. Make the most of the help that is offered to you and if you’re finding something difficult or tricky, a simple question asking for help can make things so much easier. I still need to remind myself of this very thing sometimes.

4. IT’S NORMAL TO FEEL CONFUSED

Living with a MS can be incredibly overwhelming at times. You’re introduced to an abundance of tools, mobility aids and equipment that people think might help and it can all seem very confusing. After I was diagnosed, everything seemed confusing. The future seemed unclear and it was a lot for me to come to terms with it.

But I want you to know that if you are also feeling confused about your disability and what it means for you and your life, it’s a completely normal feeling and, in time, that confusion will start to fade as you start to learn what you need, what help is the most necessary for you and how you can navigate the world with a disability in the most accessible way.

5. A MOBILITY AID CAN BE YOUR KEY TO INDEPENDENCE

Oh, how I used to hate my cane – the thought of going out in public with it used to make me feel incredibly anxious. But once I picked my cane up I slowly started to realize that it could be my key to the independence that I so desperately wanted and needed. Using a walker did the same thing along with a wheelchair.

It can be scary, it can seem daunting, yes sometimes incredibly daunting but if it gives you the independence you want or need. Doesn’t that outweigh all those other feelings? Embracing your mobility aid, whatever it might be, can be one of the most important steps in the road to acceptance and independence.

So, I might still have a few stares and glares but do they matter in the grand scheme of things? I’m out there on my own, being the independent person I want to be and you can be too. If you’re happy and confident when using your mobility aid then no one else’s opinion or judgement matters.

6. YOU CAN GET THROUGH THE DIFFICULT TIMES

You might feel defeated at times, you might feel like you’re swimming against the tide but you can champion and overcome the challenges that come your way. A disability seems to open the door to a whole new set of challenges, as if you don’t have enough to contend with already, right? But those challenges are there to be overcome and you are determined and strong enough to do just that.

Real life isn’t Hollywood. I will always have my bad days and so will you but that doesn’t mean you can’t get through them. You can come out stronger on the other side.

7. FIND YOUR UNIQUE WAY OF EXPRESSING YOURSELF

I’ve found my passion since starting Positive Living with MS, writing and blogging is my unique way of expressing myself and how I feel, but yours might be through art, music, crafts, or even building models or gardening.

Discovering that passion can potentially be invaluable, it gives you the opportunity to express who you really are and show that to others. It can be your lifeline when you’re finding things difficult. It can be your escape.

8. YOU CAN ACHIEVE AMAZING THINGS

Your disability shouldn’t be a barrier to achieving your goals. There is always an alternative way to getting where you want to be in life. If one road leads to a dead end, find another one and follow it until you reach where you want to be. People living with disabilities have dreams, hopes, goals and aspirations just like everyone else and you can achieve amazing things, never let anyone tell you otherwise.

9. DO WHATEVER IT IS YOU WANT TO DO

It’s your time to go out there and have fun. There are people out there who think that a life with a disability is a completely negative one, that having fun or achieving your goals doesn’t seem to tie in to a life with MS but it’s definitely not the case.

Disabilities can be restricting in some aspects but it doesn’t mean that you can’t go out there and have a good time. Do whatever it is that makes you happy.

Yes, there are people who won’t understand, there are people who will judge, who will make snide remarks and who will make incessant attempts to get you down but there are also people out there who will pick you back up again, who will support you, people who will have your back no matter what. It’s those people you need to focus your energy on.

10. YOU ARE NOT ALONE

This is one of the things I needed to hear the most a few years ago and perhaps one of the most important messages we need to be told. Disabilities can be isolating, especially for newly diagnosed people who are trying to come to grips with their diagnosis, the adaptions that need to be made and all the terminology that seems to come from every direction.

It can feel like you’re the only one experiencing what you’re going through. It can feel like no one around you understands the situation you’re in and how your disability is affecting you.

You might feel angry, frustrated, resentful, isolated, lonely, like you’re being left behind and maybe all sorts of other emotions. Please remember that even though it might feel like a lonely place right now, there are so many people out there who are in the same boat as you, who might be feeling exactly the same as you are right now, how you have felt in the past or how you might feel in the future.

The feeling of being ‘alone’ is more common than you think but it’s an emotion felt by thousands of other people and it’s what a lot of us need to remember. You are not alone.

Living with a disability can prove difficult no matter what your age. If you’re finding it difficult, I want you to know that although it can feel like life is throwing all sorts of hurdles your way, they can be hard to jump over but not impossible.

Although it can be difficult, a life with a disability can also be rewarding, it gives you a different perspective, it can let you see the world in a different way to others and help you to appreciate the little things in life.

Believe in your abilities, focus on what you can do rather than what you can’t, surround yourself with the right people, grab hold of the positives, express yourself in whatever way you wish and never let anyone tell you what you can’t do or achieve. You are capable of so much more than you realize. Take it from someone who knows.

Multiple sclerosis is your reality

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I know your heart is heavy. Right now you are on the verge of tears…tears that have been collecting deep in the spaces of your heart and flooding over into your mind. You have met reality face to face and you don’t like it one bit. Multiple sclerosis is your reality. It’s real and you feel it deep. You are finding yourself overwhelmed and challenged in every area of life, and you feel the weight of simply getting through today to be daunting. Laundry has piled up and errands are on hold as you sit alone feeling like you’re about to break.

You don’t feel very brave right now. Sure, when you go out the door with a smile plastered across your face, you are brave. But that’s a mask you wear out in public to cover the pain. Here you sit, alone, and the mask comes off. Your thoughts are running wild and the tears begin to fall.

Where’s your brave when you feel numb to the core? Where’s your brave when all you see is clouds before you and not one ray of sunlight can be found? Where’s your brave when you run into walls, trip on invisible obstacles, can’t walk across the room, choke on air, your body trembles, and you drop everything you try to hold? Where’s your brave when you feel defeated? Where’s your brave then?

I want you to know that you are brave even when you can’t feel it. There truly is strength in you. A strength so amazing that even you don’t know it’s there. You’ve held on this long…that is brave. I know it’s terrifying. I know it’s not easy. You don’t see it, but I sure do. You are a brave multiple sclerosis survivor in this fight.

Rise up and be confident in who you are. Don’t give up just because the road is hard. It takes a strong person to wake up in the morning and face a new day surrounded by challenges, pain and uncertainty…and you are doing it.

Discouragement will happen, exhaustion and stress will find you, but don’t allow your heart to grow weary too. It’s okay to let the tears flow. Sometimes that’s all you need to do to lighten the load. Let it go and find your brave today, because you are brave! I can see it.

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