When MS Gets the Upper hand

No matter how hard you try, staying strong isn’t always an option. Sometimes the disease and everything that goes with it just overwhelms you and you break down. You try to bottle things up, deal with them as best you can, but, every now and then it becomes too much. It feels like a heavy burden is weighing on your chest. It’s not that you want to give up or give in; it’s just that your body, physically and emotionally, can’t take anymore.

Multiple Sclerosis sickens me, literally. I find that one of the most difficult parts about this disease is its invisibility. Although you can’t tell the uproar that my body is going through, I most certainly can feel it. Yes, it makes things easier to hide and to pretend that everything is okay, but, it also leads to people questioning your credibility. “Does she really have a headache?” “She can’t be dizzy again.” “She hardly feels that all the time.” “No one is always that tired.” If only you knew, if only you had an iota of how MS makes me feel. Some days I can go about my business and give the impression that I’m “normal”, but, then I go through a phase where Multiple Sclerosis takes over and there is nothing I can do about it. I can’t speak for everyone with this disease, but for me, these phases are hard, disheartening and soul crushing.

There are times when MS breaks you down physically. You’ve used up all of your energy and now you have to stop everything and charge yourself up for the next few weeks. That’s what it feels like for me. At the start my energy levels are at about 90% (I don’t think I’ve ever seen 100%!). They decrease every day; some days use up more energy than others. No matter how much I sleep or rest those levels never increase significantly. Being tired the majority of the time is something one can never get used to. Especially with MS related fatigue. One minute my energy levels are at 85% and without warning they crash down to the mid-forties. Imagine trying to charge your phone or laptop off of thin air, that’s what sleep and rest feels like for me. I begin to slow down, thoughts become sluggish, concentration is near impossible, and movement requires more and more effort. Doing nothing merely drains the life from my battery. It’s physically exhausting.

As you can imagine, when you are physically drained you start to get annoyed because you can’t always do the simple things. Tying your shoe laces is like running a marathon, keeping your eyes open is like a game of tug-of-war between your upper and lower eyelids. It gets irritating when you think about how people are deceived into the idea that patients with MS can “live a normal life”. Enlighten me, how is fighting with your own body normal? You go through stages. You start off determined not to let this disease stop you from doing what you want to do. Then you have to slow down, but, you’re still adamant on doing as much as you can to the best of your abilities. Once this phase is over you feel your motivation decreasing, you’re emotionally shattered from trying to cheer yourself on and not give in to the illness. By now the disease is winning. You feel defeated and pathetic. “Why can everyone else do this but I can’t?” “If it wasn’t for MS I would be able to take the stairs.” “If it wasn’t for MS I would be able to drive to the shop.” “If it wasn’t for MS I would be able to hang out with my friends without having to cancel or back out at the last minute.” “If it wasn’t for MS people wouldn’t pity me.”

Multiple Sclerosis preys on your emotional stability, or lack thereof. Once your battery is completely dead there is nothing more you can do. You give in. You let the illness take over. You feel miserable, physically, mentally and emotionally. It all becomes too much for you to handle. The fatigue, the special treatment, the heat intolerance, the emotional mayhem, the dizzy spells, the blurred vision, the spasticity, I could go on and on. They all build up like water behind a dam. When there is too much pressure on the dam, cracks begin to appear. As time goes on those cracks get bigger leading to holes. Sure enough those holes lead to the dam’s demise. It collapses and suffocates under the immense force of the water.

Having MS is not easy. I wasn’t told otherwise. That being said, I wasn’t warned about the vast struggle that I would have to face either. People forget that I have Multiple Sclerosis because I can do “normal” things. They’re not normal for me; I can’t go as fast or work as hard. I can’t make plans too far into the future in fear of having some sort of a flare up. You get tired of feeling tired all of the time. You feel sickened by the fact that MS singles you out and makes a show of you when you’re at your most vulnerable. It grabs a hold of your heart and squeezes it tight, reminding you that MS has not left and will not be leaving anytime soon.

I’m all for positivity and not letting MS get the better of me, for too long anyway. Sometimes that’s a lot easier said than done though. Sometimes MS wins. Sometimes you have to let it take over, so that you can try your best to recharge your batteries and give MS a run for its money. Or myelin (horrible joke..). Usually after this awful phase I’m back up on my feet, gloves on, ready to kick MS’s ass and put it back in its place. Unfortunately, you have to go through hell first.

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Navigate Between Individual Posts

Simply click on one of the underlined links and it will take you to your desired blog post.

What Is Multiple Sclerosis?

My Diagnosis – Before

Being Diagnosed

How I Feel About Multiple Sclerosis

Positive Thinking

Numbness in MS

Living with an Invisible Illness

Being a “Fighter”

Knowing Your Limit

My Experience With Fatigue

Sometime I Forget That I Have a Chronic Illness

Telling People Face to Face that I have MS

MS and Normality

When MS Gets the Upper Hand

Cognitive Defects

Mo Scéal – Before My Diagnosis

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The most prominent thing I remember over the past few years was always being tired. No matter how much sleep I got, no matter how I tried to relax; I would always struggle with lack of energy. Everything from yawning, lack of concentration, focus levels practically depleted and no enthusiasm whatsoever. To be honest, I never really thought that hard about it. I just thought I was lazy!

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The first time I remember feeling weird (this is the only word that aptly describes what you feel when relapsing with MS!) symptoms was in June of 2012. At the time, I had no idea that or if it was anything to do with Multiple Sclerosis. I’m not going to go into details about these symptoms yet, I’ll be saving that excitement for a separate blog! Anywho, the whole right side of my body went numb. Yes, ALL of my right side and yes; NUMB. This lasted a little over 6 weeks. I visited the ER with hopes of someone telling me what it was. The doctor there said that he was “puzzled” and thought that maybe it was “viral”. Good job, Doc. Good job.

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In December of 2012 I had my first experience with optic neuritis. This is a condition where inflammation of the optic nerve occurs and it causes a complete or partial loss of vision. Luckily enough, I only had partial loss of vision for about 4 weeks in my left eye. Can you say “annoying”? As if thinking I was going blind was bad enough, in the first 2 weeks of January 2013 I got what is known as “spasticity”. This was by far the toughest relapse I have experienced to date.

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I know what you’re thinking “wow, has she got a good memory or what?!” 😉 But, stop, you flatter me!

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So, on the 15th of January I was admitted to hospital. Suffering from severe muscle spasms on the right side of my body, I would spasm every 15 minutes. Whenever I would change posture, another spasm would “activate”. Let’s just say that it was not very pleasant. Long story short, they took blood tests, did a lumber puncture, and I had 3-4 MRI’s taken, EEG’s and ECG’s, the lot! Eventually, I was put on a 3 day dose of steroids and was released on the 21st of January 2013.

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On the 7th of February 2013 I was officially diagnosed with Relapsing-Remitting MS.

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My next blog will focus on my diagnosis and how I felt, acted, thought etc.

What is Multiple Sclerosis?

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You can search the internet for days and look for the definition of MS. Trust me, I’ve been there! Looking at so many different explanations it only confused me more. So, let me try to dumb it down for those of us who are not studying medicine!

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Multiple sclerosis or MS is a chronic disease that affects the brain and spinal cord; these are two components of the central nervous system.  What is a Chronic Illness you say? It is a long-lasting, long duration condition. Chronic diseases can be controlled, but, unfortunately there is no cure, as of yet (let’s stay positive!). Anywho! Because of the affect that MS has on the brain and spinal cord a lot of people have difficulties, such as, impaired or loss of:

–           muscle control

–          vision

–          balance

–          sensation (numbness, tingling, burning, itching etc.)

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Want to know the worst part? Our own immune system is the thing causing all of the damage to our nerves in the brain and spinal cord! As a result of this, Multiple Sclerosis is known and assumed to be an autoimmune disease.

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Are you still with me? You can do it, keep going!

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Now, an autoimmune disease is basically where your body’s immune system (which is usually our protector) targets and destroys foreign substances in your body (like bacteria and such). For those of us lucky enough to have MS (yeah..), this so-called “protector” makes a silly mistake and attacks our good/normal tissue in the brain and spinal cord.

Now, remember how I was talking about the symptoms above? This next part will explain how people get these weird symptoms.

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So, let’s talk about the central nervous system (CNS), shall we? This is made up of nerves, these nerves act like the systems messengers. For example, your brain tells your hand to grasp the handle of your cup of tea, so, you do just that. These nerves are surrounded by a type of fatty substance called myelin. This little stuff helps to protect said nerves and helps deliver the various messages to parts of our body. From A to B; the brain to parts of the body. Like text messages or emails! These little messages control muscle movements like walking, talking etc.

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Because of this, the myelin breaks down and/or becomes scarred. This distorts or even blocks the flow of messages, which results in the many symptoms of MS. Sounds fun, aye? Many people explain MS like a faulty electrical flex on a kettle, or like a faulty wire.  The nerve can be compared to an electrical cable; the axon, or nerve fibre that transmits the nerve impulse or message, is like the copper wire; and the myelin sheath is like the insulation around the wire. If the insulating flex breaks, it exposes the wires underneath making them more vulnerable to damage.

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I hope that I helped shed some light on the way Multiple Sclerosis works on the human body!