On a roller coaster this summer. Not a literal one (I hate them, plus I get motion sickness). I started the summer full of ideas. What I would do with my daughter. Day trips and the like. We decided to do a musical together. Footloose! Oh the flashbacks of music and clothing. Well, I figured if I’m in I’m dancing. A few late night rehearsals during the weeks, and Sundays. By the show I was getting a little fatigued. By the END of the shows, I was cooked. Fatigue slammed into me like a Mac truck. Pain increased too. Seems anytime I try to push thru, I pay for it after. Boy did I.

I was happy my friend invited me and my daughter down to the shore to their camper for a few days. Long drive, but this friend (Carolyn) is a doll. She is always asking what am I up for, knows I need to rest and nap whether I want to or not.  Had great fun, my daughter got to learn boogie boarding, and I felt almost normal. At least we got away right? Drove LONG ride home (2-3 hours is really long when fatigue slams you). Quick rest, GNO! Friend up from VA, good night but early. Saturday I rested. I was toast. Physically, mentally, just DONE! So hubby has big surprise outing planned. Stop at church to talk to pastor (who called to ask me up for a few questions). NOT! Hubby planned a SURPRISE PARTY for me! I loved that, the thought was great, very happy about it. Don’t get me wrong. But holy hell I was exhausted!!! So more recovery time. Never ending.

It is so hard to explain recovery time. Knowing going into an event of any kind that I will have to plan in an estimated amount of days AFTER to recoup. Most people don’t get it.  See, I need time to rest after getting a shower or shaving. They are draining! Throw in other activity, it’s taking a LOT out of me. But if I don’t DO something normal from time to time, mentally it can be devastating. The feeling of uselessness, guilt, and sadness can be crushing. So, though it really throws me for a loop to do these big (for me anyway) activities, I need them. To feel human. To NOT feel like this disease is the one in control. I may get down, but I won’t give up and I won’t give in.

Ever feel like your going nowhere fast? That is where I’m at right now. Been on the highway, not able to move forward at all. Then, when you can’t take it anymore, you move! About 10 feet. At least you moved right?

I was at my last neurologist appointment, going over test results. Guess what? Abnormal results!!!! This was so exciting! My husband and I left the appointment feeling like we are getting SOMEWHERE! Most of the time I left in tears, no new answers. I finally am moving that 10 feet. Up until now, the only other test that showed abnormality was one that showed my optic nerve thinning. My MRI’s show one lesion, but I have a LOT of symptoms. Doctor is stumped. So to have one more thing to go off of is exciting to me.

This journey is looonnnggg, and it is hard most of the time. I try to inch forward when I can without bumping someone out-of-the-way. Good thing my co-pilot is God. He knows the way.

I was thinking about the girls I worked with at the hospital before all the MS crap hit the fan so to speak. How much I appreciated them as weeks before I was to, unbeknownst to me, stop working. I got coverage for many shifts due my husband and daughter being in the hospital for surgeries and hospital stays all in the same week. So, I was sad. I miss them in my life. I am happy to be in touch with some on FB and we see what’s going on with each other. I get sad, thinking how this damned disease took so much from me. We didn’t plan life this way! I should still be working and be a part of it! I get angry at the disease.

Then, I am not sad and angry. I think how now, my journey is more personal than that. I work, just not how you think. Yes, there is the I’m a mom so that’s a job (add in homeschooling!). My job also is to push thru my day, manage my symptoms to function the best I can each day. I learn to ask for help. I learn to take help offered, even when I don’t want to (like when my mom isn’t feeling good either and is also trying to not stress about my grandmothers health too). I do this so I can be mom, wife, daughter. It is a job I don’t get paid for, but is crutial to me and my family. I do get to have fun! I still have rules like any job. I don’t like them all. Napping is a rule for me that, if I break I can pay for dearly. Sounds great right? Naps!! Except if I miss one, or rarely two, I can be in bed for a full day or two not able to get up. Not napping means bad bad things for my body.

I do miss my work friends. I appreciate having had them in my life, to learn from what God placed us together for. I am grateful for it. I like we can keep in touch, there to help with a question if we have one (FB is great for this). Miss the ones I can’t. Our lives and the people in it change. And that’s ok. Change is ok. Stasis is ok. We don’t get either the way we want. That’s ok too.

I am finding myself uncomfortable. I don’t know why. I had a lot of pain on Sunday, used my cane for church. For some reason whenever I was approached with concerned eyes asking how I was……I felt joking it off as my response. I know people truly care, and the people who asked, a few I know for sure were wanting a real honest answer. I just didn’t feel up to it. I can’t put my finger on it.

I have met so many people who had “invisible” diseases that have little to no support. No one to ask how they are. I am truly blessed by all I have. God has given me so many people who care, who pray for me. So I feel really BAD when I joke, seeming to brush off those kind souls asking me because they really want to know. I don’t mean to come off as such. I am not blowing you off. I sometimes can’t process it while its happening, and I don’t know how to respond.

I appreciate you asking, and being patient with me while I figure things out. The Lord has His plan. I believe that. All the while though, I still have to get thru every day, and hope I am doing my part. Please keep doing yours. Don’t stop asking or praying for me. It makes a big difference to me.

Well my social security worked out for me. I found inaccurate records with my doctor and wrote many letters, including those letters to social security. I placed my faith in God to work thru the situation, leaving me to do the parts I had to. I don’t even know if my newer records with my letters even did anything, because it was only a couple days later that the letter came telling me I was still disabled (I knew I was, but nice to know they did too). Praise the Lord!!!

So all is well right? Well, no. I went to my neurologist to go over this entire mess during my regular appointment. Guess what? He didn’t know what had happened. AND….. this was his last day seeing patients at the practice!! I was an emotional wreck. Trying to wrap my head around it. He was the only one I wanted to see at the practice. The doctor I had seen the previous month I was not planning on seeing again. This visit was going to determine (to me) if I was going to look somewhere else. Here I thought it was going to happen for my reasons while he was still there. NOPE! SLAM!! Surprise!! My appointment lasted near an hour.

When you put so much of yourself on the line, trusting your doctor to care for you, as patients we are vulnerable. There are things we can do to empower ourselves. We can do our best to keep healthy (excersise, eating right, being as proactive as possible on our diseases), but our lives and treatments are in there hands. We go to THEM for their knowledge. I like when a doctor listens, and keeps an OPEN mind on what options are out there. My doctor did that. I figured this catastrophe was a bump in the road for us. It was devastating to know that wasn’t the case, and I had no choice in this matter.

I am still going to see a city doctor. Now I have to look into a new local one. One that fits my expectations.

For anyone that has gone thru this, kudos to you. I think it stinks. I know doctors are people too, and have to do what is best for thier lives. I don’t want a miserable doctor who doesn’t want to be there for his patients. I just hate the feeling of abandonment.

One more thing to put in Gods hands.

A couple weeks ago I had a particularly hard week. It started with Social Security telling me I was no longer disabled, which meant going to their office, starting the appeal, getting info to/from my lawyer. This sent my body into a downward spiral. Top it off with a horrible chest cold (didn’t help my asthma), then my period and OY VAY!!!!! My mother took over for me since I could barely get out of bed. I even had my daughter help get me clothes out so I could get changed.

Now, my daughter is 8 years old. She has such a big heart. She broke down telling me how she wished God would just take away my MS. It seems like a whirlwind to her, always changing and she didn’t know what to do for me! She wants to help, but she wants me to do things with her, on and on she went. I was near tears. I told her how proud I was of her sharing her feelings with me, and that she always could, no matter what. My hubby and I sat with her and he told her he is much (much) older than her, and he didn’t always know what to do. Then I told her I HAVE IT and don’t’ always know what to do.

Ain’t that the truth! I don’t. Everytime I think something will help; it may once, then not again. I feel like I’m on a rollercoaster and I want to get off!!I try to read my body, “Listen to your body” I’m always told. Guess what? I can’t always understand it!!! Trying to adjust to that type of life is hard. It’s hard for me as the adult. As the sick one. The one who feels things people can’t see. I know it’s hard for adults who don’t have it and are caring for their loved ones who do. They can’t see what I feel. It’s easy to forget what you can’t see. It is so frustrating for me to have to remind people, frustrating for them to keep it in mind.

Now put yourself in an 8year olds position. Mommy has been sick for years with something I can’t see. So hard to wrap your head around it. THEN it changes ALL the TIME!!! I have a good morning; I can then have 2 crappy days in bed. Then a day or two ok, and then crash. I never know!!! And we expect her to be consistant with things; behavior, manners, school, etc (can’t imagine what she goes thru).

I feel sad. I get upset. She tires me out with her attitude some days, and though I tell her this, I also want her to know the MS is NOT her fault. Then I feel like it’s my fault she feels so twisted up with her emotions. It is ever changing.

No quick fixes here. We must keep communication open (also hard for an 8 year old sometimes!) I told her God gives us what we can handle, and I believe He has a purpose for us to learn from every situation He gives us. WE may not know what it is. HE does. Knowing that gives me peace on most days. There are days I just want to scream or cry. That doesn’t mean I don’t have faith in Him. I am just human after all. I always have pain and fatigue, just differing levels of them. That doesn’t mean we can’t be happy. It means we have to try harder, and cherish the days we have, the times we can do things together. Because I never know when I can do it.

Today I went to my firs MS support group. As I listen around the room, I can’t help but think, feel, SO grateful for my support at home. My support thru my church family. There are SO many people that their families don’t understand, believe, or care. It is astounding to me how uncaring and ignorant people can be to their own family memebers (ignorant= 1. Lacking education or knowledge 2. Unaware or uninformed).I am so grateful God has provided me with this many caring, loving and understanding people in my life. I thank them all.

I wrote this as I am in the meeting, listening to all the different people there. Like a snowflake, all of us are different (in our symptoms), yet so much alike in them too. As one person talks about any given symptom, 5-10 or more of us are shaking our heads like “yup, me too. Gotcha”. Some are newer like me; others have been diagnosed for 15 or more. Men, women, mothers, daughters, fathers, husbands. Some caregivers were there (I asked mine to stay at home because I didn’t know what to expect). Some were struggling alone, only the internet to supply support. I was just so moved I had to write what I was thinking, otherwise I would surely forget it (as happens so often). I am grateful. For my husband who recently has become more aware of how real this is (as an invisible disease it’s hard to wrap your head around when you don’t experience it all firsthand), the struggles I face, his role in our new reality as opposed to what we “signed on for”. My mother who has retired and been such a help to me, is there to help with my daughter when I can’t be up to be mommy (again, not what I signed on for!). For my daughter, who at 8, is trying so hard to really get what MS is, wants to make it go away, but still wants to help me when I need it (hard when she just wants to go and do and mommy can’t. It is an obvious struggle for her, and that kills me inside), even when it’s me being frustrated because for the 20th time in the morning I for the life of me cannot hold onto a piece of paper no matter how hard I tell my hand to do it, she picks it up and says things like “It’s ok Mommy, it’s just the MS. Breathe in deep….”. Ahh, what a kid. For my church family, who are always asking how I am feeling, with prayer, and I was so moved by the huge turnout for a bakesale I put together for my MS Walk team. I am truly blessed by all this. I really, really am.

The next night at 1:15am….this is what I wrote

The me I used to be

I can’t be myself with you
I can’t even try
Since you came into my life
There’s no way to say goodbye, goodbye

My dreams, my goals
My wishes have changed
Instead of limitless
I’m left with chains
My dreams, my goals
My wishes near gone….
Only left with pain

I peak around corners
Looking for you
Hoping you won’t be there
When you find me I want to scream
(I don’t even care!)

My dreams, my goals
My wishes have changed
Instead of limitless
I’m left with chains
My dreams, my goals
My wishes are gone….
Only left with pain

You hold me down
Sometimes I can’t breathe
I try to break free
But it’s useless, useless

I often wonder
Why you chose me
Try to figure it out
But it’s fruitless

My dreams, my goals
My wishes have changed
Instead of limitless
I’m left with chains
My dreams, my goals
My wishes near gone….
Only left with pain

Get out of my head
Get out of my head
I don’t want you no more
Get out of my head
Get out of my head
I really want you gone…..

I was awake around 2:15am one “night”. Here’s what I got….

 

 

MY MS.

 

You take everything from me

Never giving back

It’s amazing I survive at all.

 

Day in and day out

What’s it gonna be?

Will I stand or will I fall

 

I try to hold on

I can’t keep my grasp

So hard for others to see

As much as I want you

Out of my life

You are now and always a part of me

 

I’ve given up soo much

Though I try not to give in

Can I do it? Some days yes, some days no

 

You make me hot, numb….

I just can’t stand it!

The pain; no one will ever know

 

I try to hold on

I can’t keep my grasp

So hard for others to see

As much as I want you

Out of my life

You are now and always a part of me

 

Ugh. I just feel ugh. Have too many things to take care of and my mind starts to cave inward or something. It is just so hard to explain. I very quickly feel overwhelmed then anxious. I can’t keep track of things that are to others simple. Multi-tasking is out the door these days. For example, I was filling out a form for my grandmom and a man said “Oh I was gonna start a conversation with you, but your busy”. I told him “I can do both, I just can’t guarantee the outcome!” True to form, I started filling the form out in my name. Duh. It just isn’t working right now.

Since I was sick with bronchitis (and cared for my daughter who had strep followed by bronchitis) in October, my body is not quick to jump back to my “normal”. And my normal would not be a fun feeling for the average person. I don’t look it, but I am SO fatigued and in a lot of pain most of the time. My symptoms haven’t been better which is frustrating to me. They started to level off to tolerable if I planned my day right. Now forget it. Thank you immunosuppresant drugs. So I feel just ugh.

So many with invisible diseases can relate I am sure. How many of us wish we could just make our family or friends get it? Some do. I understand not remembering all the time. Unfortunatley I can’t forget. Just typing this is painful. Though therapuetic to get it out. Thanks for listening. It’s nap time now.

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