I jumped on facebook this morning and the first post I read was by a wonderful person inside and out...her post read "Negativity-I reject you." I couldn't have said it better myself.
I've always been a positive person. I know the last few weeks I haven't been, but for most of my life I look for the light in everything. My mom taught me this, and her mother taught her. It is a quality that I am proud to have. Even at my lowest I tried to laugh, to smile, to find someway to make myself feel that I've accomplished something. In the last few weeks I forgot how to laugh, to smile, to be okay. This happens, it is allowed to happen. I'm only human. The support of my husband, family and friends helped me to get out of that funk, or at least it started the process.
I was giving advice to my sister-in-law the other day and that's when I realized I wasn't following my own advice. I needed to start feeling accomplished again. I had been stuck in bed, stressed, nothing going right. I wasn't motivated to do anything. My sis-in-law has her own medical issues that make her bedridden a lot and I could see myself in her. I felt for her because that's how I used to feel when I was first diagnosed with my MdDS, and I was starting to feel that way again. The advice I gave her was some that my husband gave me when he gave me that infamous swift kick last August. I need to get back to basics. I need to start over.
So, how does one get back on track to positivity?
I wake up each morning and get out of bed, even if I'm dizzy, nauseated, sick. Even if I'm only moving to the couch, I get out of my bed, out of my room. This makes sure that I wake up and start to move my body around, it wakes up my brain. I stretch to wake up my muscles. Focused stretching actually helps clear some of my dizzy spells and even some of my nausea. I don't go all kinds of yoga & pilates because I'm not that balanced anymore, especially on my bad days. On my good days I'll pull out some old ballet steps, but usually I do floor stretching. If I'm on the floor, then I can't fall, right?
My next step is to come up with a goal. It can be small or big, one or multiple, just depending on how I'm feeling that morning. It could be doing one load of dishes, one load of laundry, clean a bathroom. It doesn't matter the goal, as long as I make sure to do it before I go to bed that night. If you do more than your goal you set, well good for you! However don't overwhelm yourself. If you wake up and feel good then set maybe 2 or 3 goals, but don't try to fix your world in one day. You'll go to bed feeling like you failed and this defeats the purpose.
It is hard to not be a Negative Nancy when you have this disorder, or any illness or disability, but you can't let it define who you are. You are not MdDS, I'm not MdDS. I am Sara and I happen to have MdDS, but I'm also funny, energetic, lovable, caring. I am more than my illness.
If you stay in bed every day. If you don't try to become more than someone who stays in bed. You are letting your illness win. It will consume you. It will make you hate yourself. It will make the people around you not want to be there anymore. Yes, its frustrating and sometimes you may be your only support system. So be the best system you can be for yourself. Have faith in yourself. Trust yourself. Make the life you want for yourself.
So much has happened in the last week. Its hard to keep track of everything that has happened. After my melt down the last few weeks, I finally started feeling better. To make me feel even better, my girl Drea decided to come down from Richmond for the night. I got to spend Valentine's Day with her shopping and hanging out. It felt awesome to just hang out with her. I miss her being around all the time. She's such a wonderful person.
I've also been proud of myself because I'm getting back into my couponing. I started this awhile ago, but started to slack a little bit. I've gotten myself back on track and I've even started teaching my sis-in-law. I reorganized my kitchen to work best for me. When you are dizzy and everything already doesn't make sense, it feels good to go into at least one room that is exactly how you want it. Everything has its own place. I make sure that every night after dinner I load the dishwasher and start it at least by the next morning. When I get tired or dizzy from standing, I sit down in a chair or on a stool.
I've posted before about my items that I use for cutting safely. You can read it here: Kitchen Tools
During my emotional two weeks, I wasn't able to do much around my house. I felt miserable, so I took action. I started researching. I was online (when I could be), and started looking at different cookbooks. Reading is still a little difficult for me. It all depends on the print and style of type, but I'm getting better at it. Cookbooks are easy to read because they are short excerpts.
I started collecting recipes that sounded easy and fast to do. For the last week I had a new recipe that my family tried each day. I only had one night that was a recipe that I've done before. but its been a long time since I've made it. I also wanted to start trying new things for my kids. My 7 year old son has decided that if its not Mac & Cheese, chicken nuggets, or something along those lines, he doesn't like it. Its been very frustrating. With the whole family trying new things, he sees that mom & dad are trying new stuff too. We sit down together, eat and then vote if the recipe is a repeat. My husband has liked every meal I've found, there was only one that I didn't like. My daughter loved most of the meals, and my son of course hated most of the week.
So, here's how I did it:
I went through and found 12 meals. (We have a huge family dinner with my mom & siblings on Sundays and we all chip in for those meals).
I made a list Monday-Saturday and listed each meal for a day, making sure that none of my meals repeated in the week (i.e. having pasta two nights in a row, or pork two nights in a row) I tried to find re
cipes that I already had some of the ingredients on hand. I then set up my grocery list and went out with my mom-in-law on Friday. ( I still can't drive so I have to ask for help with that). The key is staying very organized. I know this sounds like a concept so foreign to us MdDSers, but its paramount. You don't want to forget any ingredients and you don't want to have to go back out again.
Each night starting about 4:30 (unless its crock pot night, then I start at bout 9:30) I would start the process of cutting, knowing I would need to take breaks to complete it all. I do all my cutting and chopping at the same times since this takes me the longest. Like I said though, most of the recipes I found had very few ingredients and were so good!
Pinterest.com also has a lot of great recipes that are crock pot freezer meals, now I have not tried this yet, but I plan to. My idea is to get up with my mom, sister, husband, and kids and have everyone chip in and help cut up, measure and sort everything. We will then split up the meals with each other. I'm hoping to be able to do this with them in the next few weeks. Cooki9ng is my favorite activity to do. I love being in the kitchen and creating meals that are good for my family. It brings down my anxiety and calms me when I'm frustrated. Its my healing room.
All-in-all, I'm feeling better. I still have my horrible cold, but its not as bad as it once was. I'm still under a lot of stress, but in all of that, I feel like I'm aaccomplishing something, even if it is something small. At least I'm getting it done.
If you go to Pinterest.com and search for me, you can add me to your follow list. I have two boards, one is "Food" and the second is "Recipes We Love" I'm making sure to keep the ones we like and delete the ones we didn't like. I'm also going to start a board for MdDS tips that I find, but I haven't started that yet, that will be my goal by the end of the week.
I hope you enjoy!
Until next time!
I know that my last few blogs have been a little depressing. This is not my typical self. Obviously things have been a little strained lately. Many people have told me that this is strange for me to be this way because this is not who I am. My mom, who learned from her mom, taught my siblings and I how to always stay positive, persevere and push through, find the good in all that comes your way.
Depression runs hard in my family. Many people don't believe in depression. They believe that its all in your head and its all your perspective. Well, as a survivor of it I can tell you that it does exist. Its a difficult disease to deal with, its complicated and yes it is in your head (duh!). Depression, in layman's terms is a misfiring of signals in the brain. Sometimes good therapy can help, and in some cases you take meds to help the system to get back on track. I used to have to take the meds when I was in high school and the start of college, but I've been off of them for awhile. I contemplated going back on them last summer when things started crashing down last year, but I fought against it. I haven't felt like things were that bad since, until recently.
The night before last I had another bought of insomnia and couldn't sleep. I stayed awake staring at my ceiling in my room contemplating my choices. As I mentioned a few days ago, I still see no good in all of what has happened in the last few weeks. I don't see a reasoning behind all of this. For the first time in awhile, my husband came up to me and just wrapped his arms around me and said, "It will all be okay. We will get through this together just like with everything else. I love you." Now my husband kisses me always. He tells me he loves me everyday on multiple occasions, but for him to just see that I needed his shoulder even for a minute meant the world. Even though I still feel weak, it gave me a little of my strength back. I've decided that its okay for me to be down about all of this. If I ignore it, then I will become even more depressed. I need to be more open about how I'm truly feeling.
Then yesterday a dear friend called me. I broke down on the phone when I told him that I hate talking to people anymore because the first thing they ask is how I'm feeling and I'm tired of telling people I'm fine. I'm not fine. I feel broken and weak. I'm tired of fighting. Most of my friends know I hate crying. As I child I always cried, I was known as the cry baby of my family and over time it made me shut down the tears in front of people. I don't want to cry to people about what I'm dealing with. I also told him that I don't want to talk to my friends about it because none of them live close. Its not like they can do anything to help. No one can be here with me and even if they were its not like they can fix it. So then I feel like I'm making my friends feel bad or guilty and I don't want them to feel that way towards me.
Out of everything I have dealt with in my life, this is the thing that has broken me down. This syndrome doesn't just affect your physical abilities but your mental as well. Its difficult to put into words how it screws with your head, with your emotions, with your mental state. It felt good to cry to my friend. Last week I was brutally honest with my husband about how I'm feeling and then to tell a friend the same yesterday, its like weight has been taken off my shoulders. To be so raw and open-hearted. When I was saying everything, I felt like a horrible human being. I couldn't believe how harsh my feelings were towards this whole situation and to the people around me, but to be able to voice those feelings out loud felt amazing. My own version of standing on a mountain top and screaming at the top of my lungs.
Of course I was terrified at how they would react, but they surprised me. My husband said, "I'm sorry you are so miserable, but you are the strongest person I know. You are not weak." My friend said, "You are not broken. You are a great mom. Your husband loves you. You are good." So for me, no more "I'm fine" if I'm not. Its time for me to stop lying to myself. I'm suffering on multiple levels, and that's okay. I have a great support system and I will get through this. So maybe that's my good? Maybe me realizing that I am not superwoman, supermom, superwife, superfriend. I'm me. I'm human. I have my good days, I honestly do, they just aren't around right now. I'm having a bad time and that's okay by me. I'm getting myself back on track day by day. This week alone I've scrubbed my kitchen, meal planned for two weeks, couponed and then shopped for groceries. I cleaned my dining room and picked up my living room. I know this sounds like something that should be so easy, but its not. These are great accomplishments for me. I have about 2 weeks worth of laundry and I'm getting it at least cleaned. No its not folded or hung up but the clothes are getting cleaned. Baby steps.
The song that I picked today is perfect to how I feel.
I posted earlier this week on my MdDS sites to find relief for the sinus congestion I've been suffering all weekend long. Every medicine I took made me feel so drowsy, so I reached out for suggestions.
Here's the deal...I'm a redhead...I know, what does that have to with the price of tea in China. Minus the fact that I'm your stereotypical emotional redhead, I have also come to learn that us gingers have a lot of things that come up that don't happen with out hues of colored hair.
First, we metabolize things differently. It takes us more anesthesia to keep us under for surgeries. It takes more Novocaine to numb us. And when it comes to medicines, well most meds that work for some, make us feel, well, different.
For me I can't take most anti-depressants or medications that help with neurological issues. This is a big issue for me because the meds that are helping some MdDS patients (i.e. Klonopin, Ativan, Clonazepam, etc.) mess with my psyche. This also goes along with all the new hormonal treatments they are trying on MdDSers. Adding additional hormones into my system is just NOT a good idea. I become the Hulk to my normal Bruce Banner (just ask the husband). And don't get me started on sleep aids! I was given an Ambien the night before I had my son Seth to help me to get good rest before inducing me the next day and I still don't remember any of the birth!
So, to get back on track, I had this horrible congestion over the weekend. I tried different meds here at home, and even Josh went out and bought some meds to try and help as well. Nothing has seemed to help. I have been drinking hot apple cider and also OJ. I've used saline spray which has seemed to help a little, and I've also taking a daytime and nighttime sinus decongestant. The night time stuff is okay because I sleep it off, but it also wears off after about 2 hours (great metabolism). The daytime stuff helped the first day, but the days after have just escalated my symptoms. I can't use products like Afrin as they cause nosebleeds for me and Mucinex makes my stomach upset. At this point I've decided to just suck it up and deal with it. Its now moved more towards a full blown cold with the non-stop coughing and sneezing, whereas before it was just the sinus congestion. I guess I would prefer the full on cold because I feel like I'm actually moving stuff in my system.
I'm keeping up with my saline spray, keeping a box of tissues on hand, and hand sanitizer in my pocket so I don't get anyone else sick.
On another note, my boy gets his permanent cast on today. He'll have to wear it for 6 weeks. This has been a trial for both him and myself. Seth is my right-hand man. He's always there to help me with his little sister and to help me when I need it. He was one of the first people to get that I can't do everything I used to and he just sort of stepped up on his own. Now he and I have both had to learn to adjust. I don't have my right hand man, well I do he just can't do everything that he could before the break. Lily has stepped up to help but of course she is only 4 (almost 5...oh my where has the time gone!) and she can only do but so much on her own. To top this off VA has had some horrible storm systems come through which have not helped my symptoms . So Seth and I have both struggled this last week. But he's an awesome kid and has been so brave through all of this.
And to finish my post for today, I would just like to throw out a big thank you to all who read my blog and respond with comments, whether they are good or bad, they are very encouraging. To struggle with something that is so far out of your hands, and to have the support system that I have, I just feel so lucky.
So apparently I need to make some clarifications to my last blog post because of some responses.
First of all it was 2 am, I have not slept in 3 days. I'm frustrated and pissed. I'm tired of always putting up a front. I started this blog to show the good days and the bad and even the worst when it comes to living with MdDS. I started writing so that I can get my feelings out of my head. Writing has always been very cathartic for me. I write better than I talk.
There are good days where I'm really am fine. I can dance around and be happy and all is good with the world.
There are bad days that I just push through and make it the best way that I can.
And then there are the worst days. The days where I am frustrated beyond my limits with everything around me. I'm in a horrible mood, not very pleasant to be around and I take all of my frustrations out on those who are around me at the time.
Now, if you are a avid reader of my blog you would know exactly how I feel about my family and closest friends. They are my world. I couldn't ask for better kids or a better husband. My mom is my rock and my sister and brother are everything to me.
I write how I feel, what's in my head whether good or bad. This doesn't make me a bad person, it makes me human. My life is far beyond perfect. I know that no one leads a perfect life. I know there are others less fortunate than I. I know that I'm lucky to have what I have and I hold all that closest to my heart.
I don't write how I feel for people to judge me and who I am. I write how I feel so that people have a perspective of what's going on in my head.
I'm tired of fighting everyday. I'm exhausted from the insomnia. I'm in pain from the pressure changes. I'm constantly nauseated because I'm on a damn boat 24/7. My heart aches for those around me who also have problems of their own and I can't do more to help.
My strength is melting more and more each day. I feel alone even though there are many people around me. This syndrome makes you feel alone, lost, out of control.
I've always been an independent person, and to have that independence taken from you breaks you on a whole nother level. I've cried more in the last year than I think I have in my whole life, and thats saying a lot.
So, I'm sorry for those who didn't understand my last post, but it was the first time that I've written on a worst day. It was what was in my head. Its still in my head. I feel broken, and thats saying a lot for me.
First let me apologize ahead of time for any mispellings. I will make sure to spell check at the end, but computers suck and I'm awake at 2am. I figured I would be productive in my bout of insomnia and catch up my blog.
Second, this song is awesome. You can check out the artist on facebook HERE or YouTube HERE. She is a local artist from Norfolk, and a fellow Maury graduate. I fell in love with this song because basically I feel like its my motto lately.
Its been a crazy couple of days to put it lightly, so lets play catch up shall we? Virginia weather sucks. We literally in one week (and I'm not kidding about this) went from snowing one Friday to the following Wednesday being 77 (yes I said 77!) degrees with a massive windstorm that felt like we were suffering a hurricane and then by that Friday (note one week from the first one) we had snow again. Now normally I would be fine with crazy weather. Its one of the reasons why I love Virginia. We get 4 seasons instead of 2, and every once in a while we get thrown a curve ball with a little warm weather here or cold weather there. Its all fine and dandy, unless you have MdDS! Let me just tell you, pressure change SUCKS and it can go somewhere, just not here. With pressure changes I get migraines, with migraines I become your stereotypical red head. I get mean, emotional, and then I start cussing like a sailor (worse than usual). I become someone I'm not. I literally start to hate my life, my house, my everything. The best place for me is in bed, but as a mom you can't just go to bed, and you can't hate your kids or your house or anything, so you suck it up and move on. Simple right?! NOPE. Nothing has been simple lately. On the first day of it snowing (the coldest day so far in our winter) our furnace stopped working AND our water heater. Both are working now, and I started to feel like I was getting on track, until the weather flipped and we had the stupid storm in the middle of winter. By Friday I'm dead tired and don't feel like doing anything. Saturday we decide to have a productive day and run errands, so that Sunday can be nothing but lazy day and Superbowl. Sunday rolls around, I'm feeling slightly on a boat, little dizzy, nothing I can't handle and then...
My 7 year old jumps out of our front yard tree (approx. 5 feet in the air) and breaks his arm. Now first looking at it, I think he dislocated it, but after hours in the ER, its broken, big time. Can they do surgery and send us home same day...NOPE. We get to spend the night in the hospital and have no idea what time my poor kid will have surgery. He was put on a wait list and they were going to fit him where they could. Now I don't blame my kid by any means. He's a boy, and he's becoming more adventerous and accidents happen all, but SERIOUSLY! Can I get a friggin break! The anxiety of having to stay in the hospital, in a room that we are sharing with another kid, and then my poor son having to have surgery. Yea, lets just say that I was on all of my meds for the last 24 hours. My son is a trooper though, so brave. He never once cried. He did what the docs and nurses and techs needed to with very few complaints. His surgery went well and he's home, we're all home....
Yet here I am stuck awake. I can't sleep. I don't feel tired at all. I think the shock and adrenaline has hit me over what has happened the last few weeks and I'm just done. I'm beyond frustrated, beyond tired of crap just not going right. I feel like every turn I'm making is a wrong one. They can't change my meds around because the only ones they can switch me to are ones that will literally make me crazy, and at this point I'm crazy enough as it is. I want a friggin break! I want just one week of nothing going wrong.
My mom has always taught me to look at the positive. Find the postive, the happy points and move forward from there, but (and no offense to you momma) I see no friggin happy in all of this! I try to have my sense of humor and laugh about it. I put on a strong front more than people truly understand or know for that matter. I smile everyday no matter how I feel, but if you look, its a very rare occasion that the smile is genuine at this point. Brave faces suck!
Like my husband said just the other night, we are so blessed to have what money can't buy. I am blessed. I know this, but come on! And yes my family is close by. I'm lucky to have them close by, however my friends are not. My closest and dearest friends and not really close physically at all, and with me not driving, well, there goes a day trip to go see them. I miss them. I miss them being just a dorm or apartment building away. Its hard to drop everything go visit someone. Yes, I know, I could call them right? WRONG AGAIN. Why? Because with the confusion that MdDS brings I have a terrible time talking to people on the phone. Frankly, I hate talking on the phone. I'm more of a face-to-face type person. Besides, I don't want to talk about whats wrong, if that makes any sense. I just want to go and hang out. Have dinner, or lunch. Window shop for all I care!
But alas, I'm here. And just like the song says, "And as for our stresses, we just remind ourselves they'll be over"
Thanks for reading my 2am rant! Until next time....
