Forget Me Not As I Remember Always

Written by on May 4th, 2017 – 11 Comments

As individuals in this crazy life we live, it’s very easy for us to forget something that we’re not faced with every day, to forget something that we can’t physically see or to forget something we’re not always talking about.  It’s not our fault, we’re not selfish people,  we just have so much going on in our own lives that if something isn’t always in our face, we forget.  Remember that saying,  “You have to see it to believe it”?  Well unfortunately, any illness that involves suffering on the inside, falls under the “you have to see it to believe it” category.  This blog speaks to those with MS, to those with a mental illness (which is also quite common to develop in cases of MS) and really to anyone whose pain and struggle at times goes unnoticed or forgotten.   Lets be clear and I know my fellow fighters will agree, what you are about to read is not a complaint, a pity party nor am I throwing down the victim card for myself or anyone else.  I am touching on the very real struggle (hashtag the struggle is real lol….  I had to spell it out or it wouldn’t have the same effect) of being forgotten about.  Alright, lets break it down! Hammer time….

Similar to mental illnesses, those who have been diagnosed with MS struggle internally, every day.  The lucky ones, like myself, experience the majority of symptoms on the inside so all anyone sees are my charming green eyes and my welcoming smile.  I complimented myself and I am totally ok with that haha.  If you walked into the house as I sit here and write this blog you wouldn’t know the following: I woke up this morning wondering what I was going to be faced with today.  Meaning, how my symptoms will present themselves today, will I have new symptoms, will others have gone to sleep, what will pop up as the day goes on, you know, the usual morning routine.  No?!  I also woke up completely exhausted because I didn’t get a full 8 hours of sleep, hell I didn’t even get 4 hours .  Ya I know, Boo-F’n hoo… try having kids, we’re all tired etc.  I get it!  I’m not alone and I’m not complaining.  After running through the checklist, I am grateful because I get to drive myself to work, work with my incredible team and keep on truckin’.

Getting back to it, as we all know, sleep is incredibly important for everyone’s health never mind factoring in a critical illness.  My left hand feels like its asleep and if I have to hit backspace one more time I may scream, just sayin’.  My abdomen is incredibly tight today, that “MS hug” you may know of.  It shows its ugly face more often than I’d like BUT as a quick off topic side note, when I stick to the AIP diet STRICTLY, I don’t experience that symptom…. throwin’ that out there.  I could go to sleep right now (it’s 5:30pm) and sleep until tomorrow.  Clearly, I can’t because I have to be an adult and do adult like things.  Finding the energy to Swiffer up the dog hair I am staring at after a long day, seems soooooo challenging.  Then there is walking the dog, doing dishes etc.  I am very lucky I can still do all of these things, believe me, I know that! but sometimes the smallest tasks seem like mountains.

Listen to your body my Doctor says, push yourself, my friends and family say.  Don’t overexert yourself, the Doctor says, push harder to build more muscle, others say…Holy Hell!!!  If you knocked on the door right now as I sit here typing, a friend, family member or whomever, wouldn’t know any of this, not unless I sat them down and told them.  In fact, even if you knew I was diagnosed with MS I’m certain it’s not in the front of your mind to immediately stop and think about it.  No offence, others aren’t always on the top of my priority list either so, it is what it is.  There are times when I opt out of plans, or respectfully decline plans because I am not feeling overly social, or happy, or up to engaging in conversation and smacking a smile on my face and I can’t prepare for when I feel this way.  This didn’t all start in August when I was diagnosed, I have been dealing with mental exhaustion, brain fog and what I thought was just being lazy, for a couple of years.  It wasn’t until parts of my body started going numb that I looked into it and it turned out, I’ve had MS.

I will always remain positive and do what I can to help others do the same, this is my new reality and the reality of others whose scars and pain are hidden under 7 layers of skin and a big smile.  As time goes on we will learn ways to live our new life and things WILL get easier.  We will still have our shitty days 2 years from now, 20 years from now etc etc…and for this, I ask you to Forget Me Not.   I’m not implying every single day is awful, it certainly is not.  There is A LOT to celebrate and to be thankful for and I am very much in good spirits, especially when I get to write to you all.  Not everyone is like me though.  My point is to remind you all, myself included, to make it a point to remember your friend, family member or neighbour who was diagnosed with something months or even years ago, they still need to know you’re walking with them.

To my point of “you have to see it to believe it” and the stigma of “they don’t look sick” makes it much easier to forget.  With my brain fog, I often have times where I struggle to get out what I want to say, searching for the right words and I may not always be able to recall information immediately.  Often these situations turn to jokes, at my expense, why?  People forget.  In your defense, I laugh most times right along with you.  How would you possibly know the days when I don’t find something funny?  You can’t and you won’t.  If you promise to forget me not, I promise to communicate with you through this incredibly uncertain journey.   We don’t walk around with a sticker on our forehead that says “I suffer internally, please ask me how I’m doing” or “please refrain from your sarcasm today because I’m having a bad day”.  Heck! If I have a day of no symptoms and wake up refreshed, even I forget!  So I ask you:

  • Forget me not when I am having a bad day, I am not a bitch, I am just scared or uncomfortable.
  • Forget me not when I can’t stay out late or decide not to come, I’m not antisocial, I’m tired or frustrated from my mind racing or I’ve had a long day.
  • Forget me not when I can’t remember what I wanted to say or something that you told me, I was listening and I DO know what I’m talking about, my mind is just working against me at the moment.
  • Forget me not when I call you and ask for support, even if we don’t talk daily or monthly, understand that I chose you because I know you’re strong enough to help get me through the day or this particular moment.

If you can try to forget me not, I will try to take your hand and help lead you as we walk this journey together.  I may have days where I politely ask that you leave me alone lol but give me time and I will explain.  There are days when I am reminded more than others that I have a critical illness and days where I think, OH YA! hadn’t thought about that.  Most days, my mind races (will this progress, will today be worse, will today be better, how’s my hand, SHIT, I feel nauseous from my medication today, this SUCKS, oh crap, my entire arm is numb, did I sleep on it wrong or is this new..?  Oh good, ok, I just slept on it wrong, FEWF!   The biggest challenge someone with a mental illness or an illness like MS faces, is that people forget our daily struggles.  Once the shock of the diagnosis is over, things tend to quiet down.  The phone calls, the how are you doing, the I’m thinking of you…. They all start to diminish.  Now, that said, does anyone with a lifelong illness expect a message or a phone call every day for the rest of his or her life?  Hell no!! Actually, please don’t lol.  Periodically, we still need to know that we’re not alone.  15-20 years from now, I will still have days where I need my friends and family, days where I would wish someone asked me how I was doing but unfortunately, statistics show this doesn’t happen for the most part.

Have you ever woken up in the morning and been so frightened to go outside and face people, or wondered if you’ll have a panic attack today?  Have you ever woken up in the morning and wondered how your walking will be? Ever wonder if the stumbling around in the morning will end before you have to walk through the hallways at work?  Ever wonder why you’re so incredibly angry, than sad, than anxious all in the same hour for no apparent reason and then feel completely crazy with no control of your own emotions?  Ever wonder how it feels to have to ask these questions to yourself (and many many others) every day and have those around you forget what you’re going through?  In turn, unknowingly causing you to explain or defend yourself on top of everything else.  I want to make mention that although I use the word “I” I am generally speaking.  My own personal support system have all been and continue to be, my rock.  I’ve referred to anxiety and panic attacks that I personally do not experience BUT many others do.  I couldn’t ask for a more supportive family, work family or group of friends.  I have to say without the support of all 3, I wouldn’t be half as strong or “OK” as I am today.

I hope that I have offered assurance and comfort to those that experience all I am talking about and more.  Know that you are not alone and that it’s ok to not be, ok.  I also hope that it served as a reminder to reach out to someone and let them know you’re thinking of them.   It takes less than 2 second to simply say the words “Are you ok?” nothing else… Just.  “Are you ok?”

Cheers

 

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11 Responses

  1. Roz says:

    I have to say I think this one is my favourite so far. Truly amazing……xoxoxox

  2. Meghan says:

    Beautifully said. Very true and inspiring.

  3. bmgalway says:

    Great blog Ashkey. Just know that we will never Forget you and what you’re goi g through. We are all walking beside you.

  4. Stacey says:

    You are sharing in such a genuine and caring way. You are inspiring so many people. Keep it up 🙂

    • Ashley M says:

      Thank you, Stacey. If I have inspired one person or offered an ounce of comfort in any way… I have accomplished the reason why I started writing.

  5. Whitney says:

    Ashley, your post just struck a nerve with me, in a good way, and I thank you for that. I just recently found out I have MS and it has been a lot to swallow lately, and I’m happy to hear someone is dealing with it so positively. Thank you for the hope.

    • Ashley M says:

      Whitney, sorry for the late response. I must figure out how to get notifications to my email. A lot to swallow to say the least. I could have been in fetal position and to be honest, I wanted to be. I felt like I was told my future, I had no choice and this was it and it’s NOT! I don’t like the “I’m sorry to hear” so I won’t say that to you. What I will say is “Ok! You have an answer!! mission complete. Now, how do we fight back!” It’s very easy to feel sorry for yourself and it’s ok to have those moments but what’s important is remembering that life isn’t over. Having your support system get involved, come to appointments and really just learn about MS, is a huge help! In time, you will learn the best way to live your new life. Millions of dollars are being invested into research around food and how important and beneficial a proper autoimmune diet can be in managing our illness. New medication is coming out monthly/ yearly, researchers are uncovering answers that they didn’t have before, like the stem cell research which is so close to being termed a “cure”. Research is still underway and not FDA approves yet. We are lucky to have been diagnosed at a time with more options and answers than those 20+ years ago. I encourage you to read my other blogs about food. I have learned SO much and continue to. How you plan to fight this is entirely up to you and what’s best for you. What I will say that is nonnegotiable, is your support system!! You will have days when your angry, want to be left alone and sit in a corner with a blanket over your head but always let people help you. Don’t push anyone away. If you lash out at someone (and boy do I!) acknowledge it, apologize and keep on truckin. Everyone around you just wants to help and just like you’re learning to take all of this in, they are learning what you need and how they can help you. We can do this!! Message me anytime via email, Facebook. I see a naturopath and an MS specialist so I am more than happy to share the information I get. Sending you positive vibes in your new journey! I was only diagnosed a year ago so I am right there with you, learning with you and struggling with you. You’re not alone.

      • Sadhia says:

        I am truly grateful for your inspirational advice. Positivity is the answer. Guess we all have our good and bad days. I am newly diagnosed for 2 months now. It has been a tough journey. Medication takes it’s toll on my body. I am strong and can beat this!

    • Ashley M says:

      http://events.iteleseminar.com/?eventID=98515713

      Things like this is what I focus on and search for 🙂

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