Posts

What people with MS would love to hear

/6 Comments/in /by

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.

Life is crazy right now

/5 Comments/in /by

Sometimes life grabs us, takes hold and shakes us hard. We are left with our head spinning and we are desperately trying to just hang on. At those times we wish life would give us a break.

Life is crazy for me right now. I can’t keep up with everything going on. I am on day 3 of steroids with 2 more days to go. I have noticed a bit of energy returning which I so need but it can’t come quick enough. I’m trying to be watchful of the foods I eat because steroids have a tendency to bulk the body up. I don’t want that. In those moments, I have learned to give myself grace. I know I won’t make perfect choices, but some forward motion is enough.

When I’m exhausted and struggling to get up in the morning, I may not spend my time in deep thought but I know I still need to care for my body to ensure I can care for those around me. I have to let go of the guilt and shame that comes along with it.

I may not be able to write every day and pour out my heart how I want to, but it is life-giving and important to me to share with you, to walk together. So I’m finding little slices of time to connect with you, usually between naps.

It’s completely acceptable for the laundry to go unfolded so I can spend a few precious moments with friends and family. It’s okay if I have to rely on eating out a bit more. I’m doing my best with what I have right now, but that doesn’t mean I need to spend hours and hours on Facebook or X.

Maybe you’re dealing with your own health issues that scares you with each passing moment. Maybe you’re swamped, unbearably busy at work, or dealing with intense financial stress. In this crazy season, hold yourself to a gracious standard of love. Let the little things go.

Whatever it is, focus on what matters and what is non-negotiable. That’s your baseline. Let everything else be drenched in grace and give yourself a break.

We’ll practice this together.

Do you see me?

/16 Comments/in , /by

That’s it. I don’t think I can take any more. I have worked and worked and worked, yet, things seem to just keep going wrong. It used to not be like this, but now I’m the person they don’t see. I stare out my window into the world and I see them. So many lives oblivious to my pain, to my illness, to my struggle with multiple sclerosis. I wish to be seen, to be known and understood. I sit here in my house, alone and with my heart torn out. The sorrow is deep.

The masses see my wheelchair and so they should, but they don’t see me. I’m not invisible. I’m not broken. The loss of my mobility is crushing. It makes me long to shout out “Hey, I’m here, I’m alive, Look at me.” But all I can do is stare out the window.

I know I’ll never be the same. I know I’ll have to move on. But today it hurts too much. Today I need to just sit and stare out the window as I contemplate my life.

Today I feel numb. I feel anger. I feel sorrow. I feel confusion. I feel the loss of my active life that has been pulled into the darkness. The unpredictable waves of grief wash over me like a tidal wave. I hold onto my faith and hope for a better day tomorrow.

I know I need to let the grief happen even though it feels like I won’t survive it. How can something you can’t see hurt so badly? That’s the problem with MS. It’s not visible and it makes you feel alone.

I not only lost my mobility, I lost the joy of going places and taking part in the world around me. I lost being able to do as I please without a care in my heart to hold me back. I’ll never walk down the street to see my neighbor. I’ll never walk to the mailbox to get the mail. The loss is deep and wide like an ocean and I’m doing my best to tread water when you would expect me to swim.

It is in these times that I need to stop, take a step back, take a deep breath, and tell myself, “I’ve got this!” I need to hold my head up from my sorrow. And so I do. Now I sit on my couch and rest to recover from a time brought forth by my MS sorrow. I wish you could see me and enter the pain with me. I know I’m not the only one feeling this ache in their bones.

If we are honest for a moment… life isn’t easy. It can be really hard at times. But I want to encourage you, you can do hard things. We all walk through storms in this life: sickness, financial troubles, losing a job, losing a loved one, and more. It’s tragic and terrible, but even some of the most rewarding things in life can be hard… like running a marathon. Not to mention, even the little everyday things, like doing the dishes, having no gas in the car, running late, and spilled coffee, can be so hard and frustrating on days where everything seems to be going wrong. So how are you supposed deal with all of this?

Today I want to encourage you that the words you speak have the power to change your mindset. My mom always says “You can do hard things.” And in the midst of the hardship, remember you can do hard things and it too will pass.

Sometimes I think, what if I told myself words like, “you cannot do this, it is too scary.” Naturally, those are easier words to say but they don’t bring anything good to your life. Living with MS is hard, frustrating, scary, uncertain, chaotic, and depressing. What you are going through is hard. But you can do hard things, my friend.

I want to challenge you to be more aware of the words you are saying over yourself and others. Are they words of life or death? I want to challenge you to embrace this messy, hard life and face it head on. And just know, whether it is a moment of hardship or a season you are in, this too shall pass.

Conquer the MS Beast

/3 Comments/in /by

Earlier this week I tackled my plans to set up solar lights leading to my front door. Sounds easy, right? But I had lots of unforeseen problems. I gathered all the supplies needed to make the area beautiful but knew it would take a lot of time and patience to set everything up. The picture on this post shows what I did. I still need to get some plants for the area above the lights though. Right now it is a bunch of mulch but looks pretty even without any plants in it.

I had a few bags of white rocks to fill in the area around the lights but knew it wasn’t going to be easy to lay things out. I mapped out the light placement, dug up the area where they were going to be placed and laid down weed barrier to deter weeds from cropping up in the middle of the rocks.

One of my main issues while working was that I kept falling over due to my lack of trunk control. I couldn’t stay upright on the ground while I worked. It was challenging to keep still. I scraped my elbows and even my forehead once… ugh! Pulling myself up every time I fell over wasn’t as easy as it sounds. I ended up bruising my tailbone too as I inched my way back and forth across the sidewalk.

I feel accomplished with all the work that I got done. As I was working I kept thinking that bad things aren’t just happening to you and me… they’re happening everywhere. The way I see it, if I hadn’t gotten sick with MS, I would have never met you or had the opportunity to give you encouraging words to cheer you up.

MS challenges? Pfft, they’ve got nothing on me! I’m like a bulldozer, smashing through obstacles with sheer willpower. Nothing can extinguish the fire burning inside me to conquer the impossible. No matter how tough my MS life gets, I’m the kind of person who keeps pushing forward, defying the odds.

Setbacks will happen. I see them as temporary blips on my journey to greatness. Unleash your inner resilience to conquer whatever life throws your way. You have the power within you to create a life filled with strength, courage, and unwavering determination.

We are living in such dark times. I never dreamed of all the confusion, challenges and deception that is taking place around the world today. I had such high hopes for my future but I’m finding it harder to stay strong in the midst of the battle.

There are great things ahead. I really believe that. I refuse to throw in the towel no matter what life hurls at me or how bad my MS progression becomes. I’ve got an unstoppable determination to conquer the MS beast.

My multiple sclerosis decision

/32 Comments/in , /by

After much thought, research and prayer, this year I made the decision to no longer use any MS therapy drugs to treat my MS. I have PPMS which in itself is difficult to manage, but from the beginning nothing has worked for me to help slow the progression. I remember using Rebif after diagnosis, then Tysabri, Rituximab (trial use), Aubagio, and my last was Ocrevus. All with intermittent use of Solumedrol when things got really bad because that was the only drug that would actually treat the inflammation that was occuring when MS is active.

Over all the hours sitting in the infusion center nothing has worked. I’m thankful that different meds work for Relapsing Remitting MS. Many people have been given a shot at holding off worsening progression. But the large costs involved with the different meds has gotten ridiculous. Thousands of dollars for one dose?!!

I talked with my neurologist at the beginning of the year of no longer using Ocrevus and she approved my choice. I will see her once a year to give updates but unless something really bad happens I won’t have to visit. I know a lot of people think that it’s a bad idea to do such a thing, but it’s my life and it’s how I want to live it.

My decision for stopping Ocrevus was because of how Ocrevus was fast tracked through trials to get FDA approval. The fast track part just didn’t sit well with me. We still don’t know the long term stats and even if they will be accurately recorded. I was uncomfortable with the cancer rate for people using it vs. the placebo… but there’s still no accurate data.

After Covid there were so many issues people were having with big Pharma and finding out all the get rich schemes that were going on around the world. I didn’t like it one bit. I never got the “clot” shot and am so glad of that. I did get a bad case of covid but just nursed myself back to health without doctor intervention. I’m told that makes me more immune than the vaccine anyway. People weren’t helped by it and secrets are still being uncovered about what happened over the last few years. It’s sad really. So much deception. So many secrets.

I know this will be a message that can get me banned online but I actually don’t care. Ban me if you must, but I will never stop talking about my life and what is happening. I know that there is more to life than meds, doctor appointments, MRI’s and the like. I want to live my life now… not later when things may get better. My now is important because that’s where hope lives.

And the next person that wants me to get stem cell treatment, cover the cost and maybe I will. But I’m told because of my progression I’m not a good candidate for that either. I’m not looking for the next miracle cure for me, I’m just looking to enjoy my life. If that’s not okay with you… oh well. I will keep smiling, laughing, sharing and hoping. That’s just a part of who I am.

To appreciate the sunny days you have to go through the storms

/1 Comment/in /by

Multiple sclerosis is going to give you troubles at some point in your life. All of us go through them but everyone faces it differently. Many times it feels like it’s a constant struggle. Other times you may get a reprieve and have a moment of sanity and calm.

I have discovered that troubles play an important part in our life. They give us a chance to view everything happening from a different perspective, a new vantage point, a changed mindset. It’s important to appreciate the sunny days ahead because there will be stormy ones for sure. Those torrential downpours can be dreadful and overwhelming. No one likes them, but of all things you get a chance to clean out the weed once they pop up.

For me I saw the commitments that I made needed to change in order to simplify my life because they were overtaking me. I discovered that I was doing them just so I could get recognition for it. That’s just me being honest about it. I wouldn’t have ever told anyone my motive, but deep down I knew it was true.

Someone else could do a better job but I wanted to do it myself. That was so selfish of me. Once I gave up my commitments and made way for someone else to step into the position, my time was available for other things and I found myself actually enjoying the job the other person was doing in my stead.

There is so much in life to be grateful for:

  • Having air to breathe
  • The feeling of the sun
  • The smell of flowers, fresh-cut grass, and trees
  • The people we have in our lives
  • To be alive
  • For a beautiful sunrise
  • For each new day
  • That today is probably not the worst day
  • For a hot cup of tea or coffee
  • For the hard times, because they will help us appreciate the good times
  • For failure, because it makes us stronger
  • For the body—it carries us through this life
  • To be able to learn new things
  • To have a place to sleep at night
  • For time to experience life
  • For simply existing
  • That you will get to live today and hopefully tomorrow, too
  • For health, even though it may not be perfect
  • For family

Change your perspective a little bit. Let the rain wash away your trials, burdensome commitments and undue stress so you can clean out the clutter and get a clearer view of life itself. Next time you have troubles, change your perspective. Let it rain so it can ease your troubles.

It’s all about your mentality. If you see multiple sclerosis as your problem, I’m sorry to say the problem has just started but if you think it as an opportunity to discover the importance of life, your opportunity has just started. Keep at it. Believe you can get through the struggles, overcome the chaos, and rise above the hardships…. little by little keep at it and as time passes you’ll find you are doing it. You are a survivor.

Next time you feel unappreciated, overwhelmed, alone and stressed remember you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to change your perspective and view the opportunities ahead that come through believing in yourself and getting rid of anything in your life that is holding you back. Just keep going… there’s a good future for you here once you get through the storm.

 

When you gotta pee

/0 Comments/in /by

Sometimes I laugh at myself, like yesterday when I accidentally dropped freshly ground coffee all over me and the kitchen floor. Laughing about it was so much better than crying. Besides, tears mixed with coffee grounds is therapeutic, at least it seemed to be for me as I laughed vacuuming it up. All I kept thinking was spilled ground coffee sure do suck! haha

I have accidents all the time. I trip, drop things, fall, misplace items, forget appointments, and have lots and lots of mishaps. Accidents seem to be synonymous with multiple sclerosis. Some of us have more than others, but they seem to just be a part our life now.

Since surgery at the beginning of the year to remove my bladder, a stoma was created from a section of my small intestines to allow my urine to be managed. I wear a pouching system that is attached to the stoma around my belly area. Even though I can’t pee in my pants like before, I still have accidents. Not the oops, I peed in my pants kind, more of the oops, the pouch adhesive has loosened causing it to leak unexpectedly all over me.

I would much rather have a leaking pouch that I can tame by holding my hand or a cloth over it until I can remove it and replace it with a new pouch than face a flood because I wet my pants. I have a bit more control over a leaking pouch than I ever had over my bladder. When I had to go, I had to go. I had no control over the muscles that made my bladder function.

I’ve gotten really good at changing my urine pouch and can have a new one attached to my stoma in about 10 minutes. For me, I change the pouch system about once every 4 to 5 days. It took time for me to get used to changing it and a lot of practice trying out different samples sent to me from the companies that make pouches, but I finally found the ones that seem to work the best for me.

One good thing about my life now is that I don’t have to rush to the bathroom every couple of hours due to a faulty bladder. Now I just routinely empty my pouch as it fills up. No more accidents in the middle of the store when I’m out and about and no more sleepless nights because of multiple bathroom trips to go pee. I normally attach a night bag to my pouch so I don’t have to empty it while I’m sleeping.

Accidents are going to happen no matter what I do. Let’s see if I can make it through the day today without one, but if I do have one I will make sure to find some fun and joy in the process. I hope you are able to do the same thing. Don’t take life too seriously.

Remember that you weren’t given an instruction manual along with multiple sclerosis. You can only do the best you can with the information you have at the time. So, don’t be so hard on yourself. You’re a work in progress.

I can’t wish MS away

/10 Comments/in /by

I feel like I was run over by a Mack truck last night. I’m exhausted, in pain and have become frustrated at dealing with multiple sclerosis every second of every day. I’m not really surprised though. I have sort of prepared myself for the unexpected. It is what it is… is what I tell myself all the time.

I can’t wish MS away or even think positively enough for it to disappear. Some people have said dealing with it is just mind over MS, haha. I doubt they have had any issues with MS to overcome or even MS itself. It frustrates me when people spout out how to deal with a problem that they’ve never had. Drive-by Antagonists need to get a new hobby.

One thing MS has done is taught me that I’m tougher than I thought possible. When something goes wrong, which it will, I tend to bounce back…not fall apart. I celebrate the small victories that I have.

Yesterday I had the energy to collapse several boxes that my new recliner came in. I used a box cutter (carefully) to dissect the boxes so they would be able to be picked up by the local garbage collection service. I think in doing so my body is paying me back because I overdid things a bit. I’m terrible at not listening to my body and always regret it later.

So far this morning I have been able to wash my face and make a cup of coffee. That’s a great start. I am not planning much for the day so I have time to recover. I know that sounds silly. Collapsing boxes is no big deal some would say. But my body says differently.

I’m not going to sit in shame for resting. I’m going to watch something fun on TV and rest in my new chair. It has been the greatest investment I’ve made in a long time. I like how it will stand me up almost entirely and allow me to easily transfer to my powerchair.

I’ve got a new project I want to start in my yard but I will wait for another time. I will just plan it out so when the time comes I will have everything I need to get it done. I just need to take my own advice and listen to my body when it’s talking. It really knows what it’s talking about.

MS can cause memory loss

/5 Comments/in /by

We live our lives in a crazy, seemingly unending fog. A fog filled with fears, doubts, unemployment, financial uncertainty, strained relationships, health problems, depression, confusion…so many difficulties and troubles. These events are common as you get older but it also happens due to multiple sclerosis.

Cognitive function is related to the number of lesions and the location of the lesions on the brain, as well as brain atrophy. The changes generally progress slowly. They are also unlikely to improve dramatically once they have begun.

Since the areas of damage are different in different people, the effects on cognition vary from person to person. You may have trouble remembering things or concentrating. Planning events can become difficult because it may require multitasking. One of the worst is when you can’t think of the word you are wanting to say so you end up playing an impromptu game of charades or you completely forget what you were saying right in the middle of a sentence. I know for me it can end in tears because things are becoming way to complicated for something so simple.

Sometimes you may feel like giving up because you don’t have the strength to stay afloat any longer. How many times have you felt like throwing your hands up and giving in? How many times have you felt like quitting because life was simply too hard? How many times have you lost sight of where you are going and not had the courage to hang on?

For me, I realized I woke up today and remembered my name. That’s a great accomplishment. I was able to brush my teeth without making a mess. I even got dressed instead of staying in my PJs for the day. All huge triumphs.

I want to encourage you today to never give up. Refuse to let your problems beat you. There is always a way to get through the difficult times. Always! Those times when you feel as if you are drowning and there is no end in sight, don’t let your inability to see the end stop you. Keep going. Keep trying.

When the struggle gets tough I want you to know that you can make it. I know you can. Fight through the fog, dodge the dizziness that happens, keep your focus on the end even when there is no end in sight. Don’t allow your inability to see stop you. Keep pressing forward one step at a time. You are closer to your victory than you think.

A message to the disabled with MS

/6 Comments/in /by

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.