Tired is as Tired Does!

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I have a friend who keeps reminding me that the reason I am tired is because I have not slowed down to rest and I keep going non-stop. I think to myself…DERH! I know this, I am sure it’s written all over my face in bold permanent marker that refuses to go away. The sad part is that I do not have much of a choice. For some reason, when I am not as busy in one aspect of my life other aspects decide they want to pick of the ‘slack’ and require that I become busy.

Example, I get a day of rest coming up on the calendar that I have been looking forward to for weeks because I have taken it off or because it is a holiday and somehow everyone I know wants to schedule something with me that day. I feel bad because I am not as social as I once was because of school in the past, now work, and MG. Most days I can push through the MG, rest is still very important. So when I can get it I try so that I do not land myself in the hospital or rack up unnecessary treatments when I can save my veins and PAIN from the treatments. They are not that pleasant. Moreover, they also require TIME. Something I already have little of. So if I get run down then I have to add in treatments and then figure out when I have time for them which actually makes me busier.

I also try to take on things I enjoy too and yes eustress (good stress) is still stress. Your body still becomes tired after it. Even after the great adrenaline rush that occurs and all the positive benefits, you still ‘crash’ afterwards become tired afterwards. Your body has to recover.

Sometimes the best way for me to prepare for such days are to take more than one day off; one to hang out with 1 or more people and then next to actually rest. It sounds crazy but I have got to rest sometimes. I work more than 50 hours every week. Sometimes I just have to do the low key things like eating out (eating the healthier options when I can) or doing an art class (I love all types of art so it doesn’t really matter).

When I get too tired…I just hide. I stop calling people and go to work and home and forget people exist. It’s not intentional anymore. It’s a coping mechanism I developed in undergrad when I wanted to be left alone by those I dated and it spread to all relationships over time. It developed into a habit now and I seem like a hermit when I am really stressed. No one hears from me and I do not always realize I am doing this until one of my best friends/or parents texts or calls me and says they have not heard from me in a while. It’s sad but true. I don’t mean to push anyone away but I just get focused on getting things done and then getting home as quickly as possible to relax because that is all I have the energy for until I can create more time. So I sustain this behavior until someone snaps me out of it and I try to rearrange things/ re-access if I am actually still busy or actually on autopilot!

It’s crazy how focused and habitual we can become!

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Silently IT Lurks…

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Everywhere I turns it’s there reminding me it has me in it’s grasps! Clawing at my skin leaving it red welts and vanishing before I anyone see IT. I tell people it has been there. They don’t believe me. They say what? I try to explain, but my memory seems to fail me. I begin to ramble like an blithering idiot.

It’s hard to tell people that STRESS is the culprit. That you are stressed about any and every THING. That little things bother you and big things alike. That the things you want most may not come to fruition but you cannot ask for help because it may mean that they will take pity  or they will look down on those around you. Even more so, they may even tell you they cannot help! Then I think to myself…would I let them help if they offered? So you fight on and become more distressed. You know the things that would be a solution to the situation and though you are working toward them. they too seem to be out of your grasp.

So you sit in your crawling skin, with the red welts that grow each day. Developing more and more HIVES wondering when they will stop but knowing they will not until you can find the solution AND REACH IT. I am becoming quite exhausted now!

POUTING!

Eye Of The Storm Kind Of Day?

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Have you ever had a day where everything around you seemed eerily chaotic and messy and you even were not 100% but felt strangely at peace suddenly? Well that’s the sort of day I am having. Don’t get me wrong I instantly Thanked God when I felt this moment of peace because feeling peace for me with my anxiety is rare. But to feel it when I know I have to prepare for THE battle of cleaning in my house, which I hate doing, and a pivotal doctor’s appointment, and having a strange sinus/head cold that I thought went away but didn’t (ish) IDK. I was just sitting there and I guess I was hearing from God that it will all work itself out. So I will trust that this is the case and pick my battles and try not to worry or stress over it.

I know the only result of doing that for me will cause increased symptoms of my MG to flare such as double vision or slurred speech or swallowing issues if I get upset enough so I will just relax and try to stay centered and focused. I will take today as A sign and slowly get everything done as I planned and if it all gets done today then I will just be uber excited and I can truly be happy.

Sneaky Illness In those Nearby

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Many people have no idea that they have suffered from a mental health condition at some point in their life. They assume because they were not diagnosed with it that it does not count. However, you do not have to a chronic illness to to show empathy or to understand that you too have had a mental episode. Most of us have experienced depression, though it is usually due to the loss of someone dear or job. They just think I bounced back, why can’t those with ‘clinical depression’ do the same? Sometimes these same people will not even say they were depressed, they will just say I was down or that it was a tough time because they do not want to label themselves (all subconsciously of course). Just watch the next time a friend says they were going through a tough time interject and say something like man you were really depressed huh and see if they will say the word themselves…most will not some may not even agree, some will repeat the same sentence of yea it was really tough (a subconscious safety mechanism).

Then you have those who have PTSD (post-traumatic stress disorder) who people associated most with war but can also be associated institutionalization, abuse, horrific crimes, first responders, and the like. These things require intense therapy; however, many of those who have PTSD do not show signs for years and those who do show signs but are in denial and may refuse treatment thereby harming the relationships around them. They tend to be touchy/ emotional about the some subjects without knowing it and even seem to become a different person. This person can be a 180 from the person you know. They feel a sense of emotional numbness, feel irritable or have angry or violent outbursts as well. They also tend to view everything in a negative way! It is just hard to see the positive in any situation. When you met them they were one person and as you got to know them more you learned of the the dark secret behind closed doors that no one else knows about (or few do) and you see what others do not and so you see the nightmares and agitation and negativity that they show you but will NOT show others sometimes.

I know 3 people who I am pretty positive have PTSD and it is amazing how they show those closest to them the symptoms because they have nightmares and get irate with them and listless in regular family activities, but how with some people who come rarely come to town they would be none the wiser because They put their best foot forward (the Mask) if you will! It almost makes you seem crazy if you are telling anyone about it because no one is seeing the behavior unless you record it or they admit to it.

The Mayoclinic offers tests and diagnosis below as well as suggestions on first appointment info., prescription info., and the like!

Tests and diagnosis

By Mayo Clinic Staff

Post-traumatic stress disorder is diagnosed based on signs and symptoms and a thorough psychological evaluation. Your health care provider will likely ask you to describe your signs and symptoms and the event that led up to them. You may also have a physical exam to check for medical problems.

To be diagnosed with PTSD, you must meet criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published by the American Psychiatric Association. This manual is used by mental health providers to diagnose mental conditions and by insurance companies to reimburse for treatment.

DSM criteria for PTSD

Diagnosis of PTSD requires exposure to an event that involved or held the threat of death, violence or serious injury. Your exposure can happen in one or more of these ways:

  • You experienced the traumatic event
  • You witnessed, in person, the traumatic event
  • You learned someone close to you experienced or was threatened by the traumatic event
  • You are repeatedly exposed to graphic details of traumatic events (for example, if you are a first responder to the scene of traumatic events)

You experience one or more of the following signs or symptoms after the traumatic event:

  • You relive experiences of the traumatic event, such as having distressing images and memories.
  • You have upsetting dreams about the traumatic event.
  • You experience flashbacks as if you were experiencing the traumatic event again.
  • You experience ongoing or severe emotional distress or physical symptoms if something reminds you of the traumatic event.

In addition, for more than one month after the traumatic event you may:

  • Try to avoid situations or things that remind you of the traumatic event
  • Not remember important parts of the traumatic event
  • View yourself, others and the world in a negative way
  • Lose interest in activities you used to enjoy and feel detached from family and friends
  • Feel a sense of emotional numbness, feel irritable or have angry or violent outbursts
  • Engage in dangerous or self-destructive behavior
  • Feel as if you’re constantly on guard or alert for signs of danger and startle easily
  • Have trouble sleeping or concentrating

Your symptoms cause significant distress in your life or interfere with your ability to go about your normal daily tasks.

For children younger than 6 years old, signs and symptoms may include:

  • Reenacting the traumatic event or aspects of the traumatic event through play
  • Frightening dreams that may or may not include aspects of the traumatic event

Russian Roulette, Life, and Charades

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It seems in my haste to get better quickly I have decided to play a cocktail of games…I’m just glad they did not end up being a molotov cocktail. I almost waited until the last minute to ask for treatment (plasmapheresis) because my pride wanted to wait until 8 weeks and this was only week 5. I really wanted to reach week 8 because it meant I was progressing and and that much closer to reaching my goal of having a baby…I believe that I would have made it had it not been for this sinus/ head cold. I was fine until this happened. I then had to contact my neurologist who was very patient and overly accommodating and able to contact the nephrologist at the hospital to get scheduled for outpatient treatment today.

He then called at regular intervals throughout the day on both his office phone and cell phone to check on me to see if I was squared away and sent emails through the patient portal to ensure images (1)that if things progresses to fast that I go to the hospital. I however, was too busy and sleepy too see these. I went to my other doctor appointments and missed his calls (phone on vibrate) and then ate dinner and passed out. One time I ‘dreamed’ i ignored a phone call only to realize that I actually did and it was my neurologist. He was calling late at night making sure that I had gone to the hospital to be observed in case things got out of control before I could get treatment today.

I was to busy trying to get sleep. I was playing a dangerous game. HOWEVER, I did not feel as I had in the past when these things had progressed. He always says to listen to my body. I felt this time I had called earlier than usual…BUT I was just unsure if I would make it through the imagesweekend and they do not do outpatient treatments on the weekend. If I had made it through the weekend cold or sinus  I knew I would make it to 8 weeks but at what cost? I would have no strength and I would also be pretty weak and close to crashing. Any little thing could take me out
after this because I would so weak. Heck I’m already playing charades gesturing at things because I’m tired and swallowing is tough…SO I though my pride had to take a blow. I know that in the end I would have made it if it wasn’t for the cold and that will have to be enough. I was really strong otherwise and I am really happy knowing that. I have come a long way. Plus now I can get back to my workouts after this treatment because I couldn’t since Saturday. So in 30-48 hours I will be about normal again…Be gone kryptonite!

Duck..Duck…Goose!

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Who did it! I don’t know. Could be no one at all. Could just be my sinuses acting up and a post nasal drip causing a sore throat. But I feel so frustrated to be caught wide open, though I saw it looming in the distance with all the people walking around sniffling, coughing, HACKING, SNOT FLYING! Sorry, let me compose myself! I have a sore throat and I will say that I will nurse myself back to health before it become more.

The hard part is with an autoimmune disorder it can become more WAY too fast. It can become a hospital trip in the blink of an eye merely because someone else was careless and decided covering their mouth was too much work. Or using tissue to wipe their nose instead of the chair or exercise equipment to wipe their nose on is more appropriate. I am drinking my vitamin c infused drinks, and getting more fluids today as well as taking tylenol. I am not a happy camper right now. I may even take a few 1/2 days at work this week just to ensure that I am able to rest well before next week when my boss will be away for work all next week. I am needed more next week than I am this week.

It is starting to make me anxious and when I get anxious or stressed it starts to make my MG symptoms flare and I was having issues swallowing which makes my anginophobia rev up. SO I am crazy freaked. The worst part is if it’s just allergies then this all started right after my ENT visit for my 1 month follow-up last Thursday. He said it was a bit inflamed but that was it no nasal drip though I said I had one the previous Saturday for 1 night and took claritin and it cleared right up. Then I see him nothing shows. The day after it happened again (the drip). Then last night a sore throat…what the heck is going on?

I don’t wanna be it anymore!!! Can I be a duck now?

Dreams and Reality

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Why is it that when you do something in real life to yourself that it takes weeks, months, or even years before you can accept it in your dreams? Let me explain, if you lose 50 lbs or get a small scar on your face, you know what you look like in a mirror but in your dreams you continue not to see this difference and try on clothes and wonder why you cannot fit that new size you just lost weight to fit into or recognize your scar is not there when doing make-up in a dream but you know it should be. It takes months before it naturally appears after seeing it everyday and dealing with it on a constant basis. It also has to sink into you subconscious. this was even the case with each new boyfriend growing up and even when I got married, LOL.

However, with my MG it was almost immediate. That was the first  time in my life that happened. Almost as soon as I got the disorder, I dreamed I had it and all it’s effects were there. It scared me. I actually had been dreaming about it before it was completely confirmed. I had constant dreams about not being able to move, pick things up, breathe, walk, and it was horrible. Though the bad dreams have died down because I now am stable and know it is not always like that for MG patients 24/7 I had never been able to have a dream so quickly about current situation. I could see the tubes from the hospitals and every current bruising or scar I had endured during this time. It made me severely anxious as well. The logical psychologist in me says it’s stress; however, if you knew me well you would know that stress encompasses many of the other things I spoke on as well. So I guess maybe the level of stress, then…

I have a lot of ‘premonition’ dreams and I have a lot of lucid dreams where I can will something to happen because I know I am dreaming but never the type of dreaming I’m talking about deals with how we perceive our own bodies and selves on a daily basis. How we see our lives. I can never quite dream about the normal me usually the next day if something drastic happens like a new haircut, a fresh scar, tattoo, or the like.

Am I the only one?

ZENFUL INSOMNIA

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I love the natural sounds of nature. So much so that while listening to the person I love (my husband) I heard the amazing artistic portrait being painted outside my window and began drowning him out until all I could hear was the thunder in my ears and see the lightning between the blinds behind his head. I was listening to the wind howl and picturing the leaves swirling and trees bending and swaying; dancing to the beat of the drums of the sky’s thunder. I was listening to the pitter patter of the rain on the roof and the draining of the water sliding down the glass and tip-toeing down crevices unseen but gurgling nearby. I was excited. These were the sounds that calm me. The sounds that make me happy. I knew I would get some amazing sleep. I even said as much to my husband as he saw the far away look in my eyes and was probably wondering if I was listening to him talk during dinner.

I finished my food. I rushed to do my nightly rituals and then got into the bed. AND BAM! Sleep would not come. I was wide awake. Listening to nothing at all. I had no thoughts. I made sure I wasn’t trying to hard. I made sure my mind was at ease. I was over-tired. This is when I sadly remember I have a MG and that a symptom can be insomnia. This is when my old insomnia of before the this MG disorder resurfaces, this is when the medication that says may cause insomnia says HELLO. Insomnia is everywhere for me! I almost want to cry because I have to be up at 4 am and I have been waking up at 1 hour intervals and have a lot to do the next day. I worry how long the insomnia is coming to stay this time; days, weeks, months, years? With MG I cannot afford to not have proper rest because all of my symptoms will flare and send me into crisis mode.

SOLUTION

Thursday night gets a sleepy pain killer since I have a closing shift at work Friday and Friday night I will use my zen music app with all my lovely nature sounds to lull myself to sleep! I will get my thunderstorm dreams where I paint murals of ideas to take action in life.

What’s Your ZEN?

Trix Are For Kids…

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If we always put an age limit on everything that was for kids we would truly have a stressful life. I believe that we should try to view life through the eyes of a child sometimes and enjoy life a children do to relieve the stress that some of us deal with in our daily lives. I model my fitness classes after fun kids activities that you probably would not dare do on your own because you fear that other adults would judge you for doing it. WE do crab walk and human wheelbarrow races, as well as over under drills with a medicine ball and someone races to the front of the line and so on. Instead of the team who comes in last gets feeling bad they actually get incentives like the other team has to plank and wait for that team to finish but they aren’t told until the end, LOL.

Also, I watch cartoons! I watch all sorts, not always with my nieces and nephews in attendance either. I sit for hours and tune in to cartoon network during regular time (not adult swim or toonami, though I like this too) and and just watch cartoons. I watch Disney channel as well. It keeps you young and innocent at heart. It’s good to laugh and enjoy kid things.

People say you should hurry up and grow up. I am grown, married, with a full-time job and though I enjoy this life, I enjoy the simple things and that includes remembering the simple fun times of being a child. I have 23 nieces and nephews and they keep me young. They remind me that Trix are just for kids!  They are for those who remember there is a little kid inside of you screaming to get out. Go to the amusement park, go to the zoo, go find your sense of excitement and wonder. Enjoy the world as you once did as a child! I promise the stress will just melt away!

Exercise and MG

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So there does not seem to be a lot of information regarding exercise and MG. Every plan I see seems to treat MG patients as if they are invalids. Perhaps this is because of the small percentage of those who get the disorder are generally males and they are 50 or older. This means they probably are close to retirement and may not be as active. But in this day in age that is not an accurate assumption.

I work in the wellness industry and though I may be seeing a skewed view there are many healthy and active 50 years old that running, swimming, biking, skiing, and doing adventurous things. They are staying in the work force longer due to the economy and they are able to adapt to many conditions and injuries that were unheard of decades ago due to technology and medical advancements.

So then my question is why is it when I look up MG and exercise do they pretend that is nearly impossible. If it well controlled I am able to bike, teach my fitness classes (which is a combination of cardio and weight lifting, kickboxing, or pilates), and even jog. I understand that those who are unstable are a fall risk, but then this when they should be in physical therapy and finding a treatment plan (a combination of medication and therapy) that will work so that they can become stronger. Telling someone that they should do minimal exercise is ridiculous. Moreover, I understand telling people telling them to do what they think their body can handle is acceptable; however, when you are dealing with MG we are still learning what our bodies can handle and what the safe medium is. So with that note we are hoping that there are going to be professionals out there with more insight than WE have. We should not be the expert. We should be able to be the expert on how our bodies feel but not the expert on what to do with the body.

Granted I am the exception in terms of exercise because it is my profession; however, it is still out of my scope when it relates to MG and exercise, I still refer to the professionals here. I want a doctor who both specializes in MG and understands physical therapy but will not speak down to me as this my field. Is that too much to ask? I do not want to be a know it all, just a person who can stay fit, continue to get some gains, and help others who were/ are healthy and have MG find their way in this trying time. We as MGers are on a ton of medications that cause weight gain and the only way to help maintain or lose weight is to try and exercise and eat right. This also helps reduce your anxiety giving you an outlet. Exercise has been proven to reduce stress/.anxiety for up to 24 hours. I NEED this in my life. How about you?