Why I had a TERRIBLE Thanksgiving day

November 27, 2017February 9, 2018 ~ msgracefulnot ~ 7 Comments

When you are sad, or in pain it is so easy to crawl back into bed, to feel like throwing in the towel, and to just give up. In an effort to SHOW UP and “put on my big girl panties”, I am here. I am processing, feeling, and writing.

Let me begin by saying that I HATE THANKSGIVING. Not because I am not thankful for many things. In fact, I remind myself everyday that I have a lot to be thankful for. I hate thanksgiving because I have so many bad memories that occurred on that day. So every year I tell myself that THIS YEAR will be the one. I put so much weight on making ONE DAY perfect. Can you say setting yourself up for failure?

What I hoped would happen on Thanksgiving:

A month ago it was decided that my family would be having Thanksgiving at my parents home which is about an hour away from me. My daughters, myself, Einstein, my brother, his girlfriend, my parents etc would all be there. (12 in total). Everyone is so busy in their day to day lives that I was so excited that we would all be together and able to “catch up”. I told everyone that I would handle the planning, the menu, the times etc. Because I wanted it to be PERFECT. Everyone was on board to let me “handle it”.

As I planned, it also occurred to me that with my kids getting older and having their own homes, my oldest daughter getting married, my mother having dementia, all of us still living within an hour of each other, and just life in general, this may be the last chance I have to make the perfect day. The desire to “hold on to my kids” became as important to me as having oxygen to breathe. I couldn’t very well ask them to not spend it with their significant others, but maybe I could have some “alone time with them” in the morning if we all drove out together.

So for the last month I planned the menu, making sure each person had their “favorite, must have on Thanksgiving food”. I made a carpool plan so that smokers could ride with smokers, those that wanted to show up only for food could get out quick, and I could have that “alone time with my girls”. I even scheduled time so that everyone’s animals would be alone for the least amount of time. I DREW A FRICKING DIAGRAM!

A week before Thanksgiving I confirmed all of my OCD thoughts with everyone. I was so excited! I even made a post that I was turning off all social media and I did!

Thanksgiving morning I was higher than cloud nine. Literally so manic I don’t think my feet touched the floor once. Yah! FINALLY A PERFECT THANKSGIVING!!!!!

Ten minutes before my youngest was supposed to pick me up, Einstein said “I’m not going, I have things that need to be done here, and it’s a minimum four hours wasted”. NOW, I can tell you what it feels like to be dropped out of a plane WITHOUT a parachute.

I felt the whole plan unraveling. Now everyone was going to be upset that their plans were changed. My parents were going to give me the, “we told you Einstein is a waste of time lecture”. The dogs would be left alone…etc etc etc.. I was crushed, I couldn’t breathe, and the amount of tears I cried would have filled a river. OH shit, my daughter would be here in just a few minutes. I didn’t want her to see me like this. I didn’t have time to kill Einstein and hide his body either.

So into the bathroom I went. I tried to clean up my face as quickly as possible, but I was still in there when my daughter arrived. She gave me a hug, and helped wipe my face. She said, “Einstein isn’t going?” I mumbled something incoherent, and she took my hand, led me to the door. I think she may have even put on my coat for me. While I was in my “fog”, she took control, made phone calls, rearranged things, and made sure that we showed up at my parents in one piece.

I spent the entire day in that fog. I smiled when I was supposed to, said “Oh I’m fine, and I’m sorry at the appropriate times, but I wasn’t there. I told everyone I that I didn’t want to talk about it, let’s just have a good day. But yes I wasn’t there. I didn’t get my alone time with my daughters. It wasn’t the perfect day. In fact, I have spent the last several days just going through the motions lost in my own fog.

Now that some time has past, and the fog has cleared a little. I realize that I did it to myself. I set myself up for failure. I forgot to be thankful for all of the things I am thankful for every day and I only focused on the negative. I let one person’s decision ruin something that I had worked so hard for.

I haven’t really talked about this with anyone, other than saying I had a blah thanksgiving, but when another person asked me this morning how my Thanksgiving was, I decided it was time to Wake the hell up, get up and show up. (Thank you for that by the way and to everyone else who offered to talk when I said I had had a terrible day)

I am both Thankful and sorry today. I am thankful that I have so many great people in my life that care about me. I am thankful that although my kids are growing up, they are incredibly strong and caring individuals. ( But I am also sorry that having a bipolar mother made them that way) I’m thankful that both of my parents are still alive.

When I began writing today, I did it in word, not sure whether I was just “getting it out there” or if I would be posting. I decided to post, because I want to “keep it real”. I’m sure other people set themselves up for failure, maybe you can relate and know that you are not alone. Today is a new day and I showed up. I am thankful that while still “covered in dirt”, I am still on the right side of it. Time to shower, get dressed, and work on “owning my own shit”.

Slump week- Having a bad day

October 31, 2017 ~ msgracefulnot ~ 4 Comments

Have you ever had one of those days where everything that could go wrong does? You are so utterly exhausted by the end of the day, you can’t wait to crawl into bed and hide beneath the covers for the night. THAT is what slump week Feels like, but the difference is that you wake up feeling that way. Who wants to get out of bed then?

If you are going through slump week, it’s important to remember …

This Too Shall Pass.

As I was trying to think of analogies to use to explain slump week yesterday, I came up with a list of things that make most people very uncomfortable or that they dread doing. If you are trying to explain what slump week is to someone and are at a loss for examples, use one of these? Just remember to explain that it’s the FEELINGS, that they experience, it doesn’t mean any of these things will happen.

Starting a new job, and being at the bottom of the totem pole. Not knowing the jargon everyone is using and feeling completely lost.
Putting away groceries in someone else’s kitchen
Having to call an automated phone line and after pushing 32 buttons finally reaching a live person that doesn’t speak your language, or being disconnected, or told you’ve reached the wrong number. Now repeat!
Writing a 2000 word essay or blog post but forgetting to hit save.
Trying to start writing again and losing electricity, or internet service
Going to a friend’s house to borrow their computer, and they have a MAC when you are a Windows Pro
Finally figuring out how to use their Mac, retyping your work and forgetting to hit save again
Deciding you need a vacation, packing for a weekend away and not realizing until you arrive that all the pants you packed are your significant others (who is 2 sizes smaller than you)
While you are on vacation, wearing the only pair of pants that fit you, needing to use the bathroom in public, and the only person to ask where they are located doesn’t speak English. While charades can be fun, it is not when the pee is already running down your leg.

I know that this list is not all inclusive, but as I said it’s a start. Maybe it will help you think of an example to describe the feeling behind slump week. Maybe it will help you realize that everyone has “bad days”. Maybe, hopefully, it brought a smile to your face.

Yesterday was definitely a slump day for me. (Yah IV on Wednesday) By noon, I wanted to crawl back in bed and I had only been awake for a couple of hours. I thought taking a shower might help me have a better outlook on the day. (I needed to shave my legs anyway and then I could say I accomplished something for the day)

So imagine this…. you are me….

Once you get in the shower, you realize you don’t have shaving cream. Ok, you will make do with soap. Crap you forgot to change the blade on your razor (or forgot to bring it with you in the first place.) So now you have to get out of the shower (yes you already got in and had the water running), but you forgot to grab a towel and the bath mat is in the washer…… you carefully navigate across your tile floor to the drawer where you keep your razor blades , change the blade and get back in the shower. Only to realize, Yes your forgot your towel again. SMH. Again, frustrating but manageable.

If you have a SMH (shaking my head) moment you would like to share, please do! I love meeting and talking to new people. (It helps you not feel so alone) 🙂 Also, feel free to add my on Facebook if you want to hear more. Remember, I am Graceful….not! (Grace Fullnot) on Facebook.

Defining Slump Week Tysabri

October 31, 2017October 8, 2018 ~ msgracefulnot ~ 5 Comments

Recently, I have had several people ask me to define or explain “slump week” as it pertains to taking Tysabri. As I sat trying to come up with a “blanket answer”, I realized that there isn’t one. Each person that has MS is going to have a different form of MS. Their symptoms and ways of dealing with those symptoms will also be different. Then I thought, “who is the person asking the question”? Do they have MS? Have they recently started Tysabri and they are afraid of “Slump week”? Maybe they are trying to explain what slump week feels like to someone else that doesn’t have MS?

While I am always happy to talk with people and try to explain, not everyone is comfortable talking on the phone, meeting in person, or even just reaching out to someone in email. So, I will attempt to explain it here and hope that it helps answer the question for some of you.

For those of you that are afraid of slump week, let me start by explaining what it is NOT.

It does not mean your MS is getting worse or that you are experiencing a flare up. It may feel like it in the beginning, because your MS symptoms may be a bit more noticeable. You may be a bit more “foggy” than normal. Your legs may feel heavier than usual. If you fight fatigue, you may feel like you haven’t slept in days even though you just woke up from a full eight hours. Basically, it feels like your MS symptoms are more pronounced than your personal norm. Everything feels a bit “off”.

It’s also Important to know that not everyone goes through slump week. For those that do, it isn’t necessarily a full week of more pronounced symptoms, and it may not happen every time before your next infusion. If you have MS, you hopefully have learned by now that there are ways to work around your challenges. Maybe you can’t walk as long, or as far as you used to, but have learned that a cane or frequent breaks can help. The cool part is knowing that, IT WILL PASS!!!!!

For those of you looking for a way to explain it to someone that doesn’t have MS or has not experienced Slump week, think about your audience and try to use something from that person’s life to explain. For example, if you are explaining it to someone who is a caffeine addict, ask them to think about the way they feel before they have had caffeine for the day. What if they had no way to get that caffeine fix? They would spend a lot of time trying to come up with a work around for it, and that is probably time that they were supposed to be accomplishing something else. Maybe they would be late for work, because they had to stop to buy some form of caffeine. Or worse, while they were driving to pick something up they almost got into an accident because they didn’t have enough caffeine to focus on driving. Of course, this example would not work for someone that doesn’t drink caffeine, but you can try to find an example from their personal life to use. You can also explain that it’s like having a full week’s worth of Mondays in one day. Another example is sitting in road construction, you will get where you are going eventually. It doesn’t actually cause you physical pain, but it does make you uncomfortable.

Ask them to imagine being given a task or several tasks, but not being given the tools they need to complete the task. Sure you can probably find a way to make it work or wing it, but that is frustrating and tiring, not to mention very time consuming and usually unproductive.

As I sat trying to think of an analogy that would work for everyone to explain slump week, I came up with quite the list of examples of life experiences that cause “regular”people to feel frustrated, or unproductive that you might be able to use when trying to explain slump week. Ask people to think about how they feel when these things happen to them, then tell them they have to do it over and over again numerous times in a day. THAT is what slump week FEELS like. It’s not gonna kill you, but it’s not any fun 😦