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I seem to be allergic to multiple sclerosis

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The immune system is made up of a complex and vital network of cells and organs that are created to protect the body from infection. Their entire purpose is to defend the body and keep bacteria, viruses and fungi out, and to destroy any infectious microorganisms that try to invade the body.

Growing up I never had an allergic reaction to anything. Food, bug bites, hot or cold weather, animals, dust mites, pollen, or drugs. The only thing I was allergic to was poison oak. It always seemed to spread by me just looking at it. I didn’t have to actually touch it… or in my childs mind I didn’t. Once I had gotten such a bad case that spread all over my face even causing my eyes to swell shut for a few days. After a visit to the doctor, some meds and lots of calamine lotion, all was well.

Since multiple sclerosis has taken up residence in my body, I have discovered that certain foods cause me to have increased symptoms like expanded weakness, spreading of numbness beyond the normal residual symptom from my initial MS troubles years ago, visual disturbances that have a tendency to keep me from being able to properly read emails without double vision, dizziness that meclizine doesn’t seem to help with. For me, over time, I have discovered those foods and know which ones to avoid. Each person has to find their own foods to avoid. It will always be different person to person.

I have also discovered my difficulties in balancing. I fall over trying to sit up. I can no longer do as my mom always said… ‘sit up straight and keep your elbows off the table.’ I simply can’t seem to do it unaided. I have cognitive problems too unlike anything I had before. I used to be able to read an in depth computer manual and be able to code computer programs based on what I had read without difficulty. Now I can’t put a line of code down without constantly looking at every cheatsheet available.

It just seems like every new symptom shows up out of nowhere and has a tendency to hang around for a long, long time… sometimes forever. I have also discovered certain drugs now give me an allergic reaction and I have to be watchful of them. My body just doesn’t seem to want to cooperate with my own body.

One thing I told the doctor is that I found I was allergic to ice packs. They always turn my skin red…(grin). I can’t get through a summer without them. They help me survive the heat. I’m also allergic to a lack of humor. There’s not enough smiles, giggles and laughter in the world of the chronically ill. You do know that it’s okay to laugh, don’t you?!

Over the years I have found that I need to take things slow and listen more closely to my body. It always seems to talk louder than I wish it would but thankfully it speaks up. Sometimes it’s the only reason I feel as good as I do. My body isn’t perfect. I fall down too much, pain visits way too often, confusion happens and brain fog seems to have taken up permanent residency. And although I wish life was different, it’s still mine and I refuse to give up.

You can’t give up on your life either. MS makes things complicated but not impossible. Impossible says it all… I’m possible.

Just like you. You’re possible too.

To those not living with a chronic illness

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Whoever you are, I fear you will never learn the injustices people living with a chronic illness endure all because they are facing the unknown and the unseen as their body is destroying itself from the inside out.

I fear the gifts and strengths a disabled person  carries within them will be dulled before they are able to share them with those who need them the most.

I fear you will cease to help a disabled patient in need because your own life is more important than the needed medical equipment, meds and even vitamins or supplements that would greatly benefit their lives.

I fear you will never know what it’s like to be disabled, abandoned, homebound, and not believed when sharing their troubles with those closest to them who should be their support…but aren’t.

I fear you may fail to see the worth of the disabled because it’s not a popular thing to do and it disrupts your day too much.

There’s nothing I can do to wake people up. Many won’t read this and others will simply discount it as nonsense, but one thing I know is that regardless of what troubles happen in my own life, whatever disabling symptoms arise and consume my day, I won’t quit. I refuse.

Me, MS, or why I can’t just get over it

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Multiple sclerosis depression… it’s a real thing and it happens. Not even the happiest, peppiest, most positive person in the world is exempt from it’s effects. It can sneak up on anyone. It’s not known exactly why multiple sclerosis has a higher rate of depression than other chronic illnesses, but it’s believed to be caused by changes in the brain’s functionality along with the emotional stresses of unexpected progression, loss of mobility, pain, social isolation, and financial struggles.

Those of us living with MS are fighting our bodies every second of every day. At times, we feel as if we have slipped into a raging river and the current is pulling us under as we fight the rapids in order to pull our head up far enough to get a breath of air only to sink yet again. We find ourselves lying in our bed with tears flowing, completely worn out, weary, and with  awful thoughts spinning out of control.

All those “what if” thoughts, doubts, fears, and questions flood our minds. They have a way of overtaking even the smallest amount of hope we have left and leaving us with only a tiny strand of hope to pull us up to safety.

That has happened to me more than once. During those times, I find myself feeling alone and worthless in a world that doesn’t seem to understand me, MS, or why I can’t just get over it. It always catches me off guard almost as if I got sucked into a vortex filled with every mixed up emotion imaginable and it pulls me deeper into the abyss of depression. It’s not easy pulling yourself out of such turmoil and confusion. This kind of thing it invisible to the rest of the world, so they just don’t get it.

What I have learned most during those awful, vulnerable times in my life is that I need someone there with me to help me process those crazy random thoughts that I find bouncing around in my brain…not with advice, opinions, or judgements, but with a hand to hold, an ear to listen and a box of tissues near by. Oh, and maybe some ice cream or chocolate.That somehow always helps.

Don’t beat yourself up just because you are having a bad day, week, month or even year. Depression is real and sometimes it’s really, REALLY hard to overcome. It takes guts to talk with your doctor, friend, counselor, spouse, or family member about what’s going on inside your head and heart.

Don’t allow guilt to creep in and cause you to think that you can’t open up about what’s going on. Sometimes we need help to weed through everything that’s going on in our life in order to find hope once again. And just so you know, seeking help is not a sign of weakness. It takes great courage to admit you have a need.

Don’t ever be afraid to ask for help. Sometimes that’s the hardest step you will ever take…but you can do it. I know you can!

I will never sugar coat my life with MS

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Have you ever had one of those days when you wished you could just curl up into a ball and hide away under the covers in bed because life was simply too much, too crazy and too overwhelming to bear? That was me yesterday. I woke up in tears… literally. That happens to me from time to time, only yesterday it hit me really hard. Harder than usual.

I hate when that happens. Sometimes no matter how hard I try to remain upbeat, positive and steadfast, I fail. It just goes to show that even people like me who strive to find the good in everything around them actually have times when they wish their out of control life could be put on hold and the pain had a pause button.

I’m human and I’m real. I will never sugar coat the difficulties of living with multiple sclerosis and I never want people to think that MS is a breeze to manage. Too many people out in the public don’t hear of the struggles we go through because too many MSers don’t talk enough about the truth of living with a chronic disease.

I am thankful for those living with minimal symptoms and that can handle the pain with ease at any given moment whether it be physical or emotional. But I know for a fact that’s not me. I talk about the struggles I face because I believe the more the public is made aware of what we experience, the more they will come to understand the reasons we have our unpredictable mood swings, cancel seemingly simple plans and spend so much of our time at home.

It’s not always easy for me to voice my needs. That’s because many times I don’t even know what I need in the first place. So when someone calls or stops by and asks how they can help out, I don’t always have an answer. It’s not because I’m being rude, antisocial or don’t want their help. Most of the time it’s because I simply can’t see past the pain in the moment to know what I truly need. That kind of thing requires too much thought and most of the time my brain just blanks out.

But I can tell you this, what ALWAYS helps is genuine care, concern, support and love. Those things help at any given moment and can be expressed through a simple “thinking of you” text, help around the house, offering to pick up some groceries, or just stopping by for a chat.

My greatest fear is to be forgotten in this fast paced, on-the-go world. It’s easy for that to happen too because many of us get to a place where socializing becomes  extremely stressful and is filled with too many uncertainties and obstacles.

Getting out of the house requires great planning and considerations that many people don’t really think about. Will the place I’m going to be accessible for my needs? Will I have quick access to a bathroom when needed? Will I be in a place where I can remain cool? If a meal is involved, will someone be there to help me cut my food? If I get too tired (which is normally a given in my case), can I leave early? Does it cost because I live on a limited budget and even small expenditures are impossible to afford?

Any number of questions have to be considered in order to leave the house. Some days those questions are easy to answer, other times they are simply too much to face.

I woke up yesterday with my laugh-box broken because the questions in life smacked me in the face as soon as I woke up. If that ever happens to you, give yourself a break and allow yourself the needed time to grieve. Grieving is a real part of living with MS, and it’s okay to have those moments. Just try not to stay there.

I had my good cry already yesterday. The world may never see my tears, but they will always hear my pain. I refuse to be silent in the struggle.