The To Do List That Never Gets Done

The To Do List That Never Gets Done

It seems like I have a never ending To Do list. Just when I manage to cross off one or two items I add on three or four more. Most of the time these are calls to Doctor’s offices or errands to be run. Sometimes there are chores I need to accomplish around the house. A project I really want to put the finishing touches on. Something one of the kids needs for school.

IMG_2582 (1)The problem is that I hate my To Do list. It sits there and mocks me. It criticizes me. It tells me how I don’t measure up to what I should be. It tells me I am lazy or unmotivated. It tells me I am slow. It tells me I am not good enough. It’s not very kind, this To Do list. It’s not very forgiving either. It expects me to get it all done in one day. It doesn’t see why it should linger there for days or weeks even. It doesn’t see the need to be added to and rewritten. It doesn’t see why it should be shuffled from here to there and sometimes told how much it is hated.

You see I have chronic illnesses. I have fibromyalgia which has fatigue as a major symptom and I also have narcolepsy which….well, narcolepsy… my body wants to sleep all the time. Add on top of these my chronic depression and you have a mixture that is ripe for To Do list hatred. Most days I have little to no energy or motivation. When I do happen to have the right mixture to get something accomplished it is usually short lived. This is very frustrating and demoralizing. Which, as it happens, is the prime cause of To Do list hatred.

What do you do about To Do list hatred? Well, there is only one cure that I have heard of and it is very difficult to achieve. Very few people can actually achieve it permanently. Most usually suffer setbacks at some point. What’s the secret? you ask. It’s not really a secret. The cure for To Do list hatred is forgiveness and acceptance. Forgive yourself for not getting it done. Accept that you are doing what you can and it will get done when you are able. See? Easier said than done huh? But it is true.

Those of us with chronic illnesses have a limited energy reserve and our body needs it to heal itself. We need to conserve every bit of energy that we can by resting whenever possible while remaining active to the point of not overdoing it. It is  a delicate balancing act that few can achieve perfectly. Especially in the beginning. Stress should be avoided. Especially stress from judgmental To Do lists. 😉

 

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Before and After

Before and After

I planned on doing this post for a few weeks and I still forgot my after picture on Thanksgiving guys but thank goodness I had 2 Thanksgivings this year. These posts were already put on my Instagram and Facebook. I wanted to share them with my Blog people though.

Thanksgiving #1

image3This is me. How do I look? Happy? Sad? In pain? Lonely? Depressed? Fatigued? I actually look like I have it all together in this pic except I am in sweats in bed and 20 minutes late. I am struggling guys. I have a UTI that I have been fighting for over a week and now (TMI) a girlie infection from that. My body is so over it and I started a flare yesterday. Everything hurts. And I mean everything. My hair. My eyelashes. Everything. I only slept like 4 hours last night so I am emotionally shot too. I am struggling. I need to get vertical. I need to go socialize and talk and eat and have a good time. But I am struggling. How do you guys handle it when you have a big occasion and you have a big flare? Give me some tips. I think I will eat pie.

What I did was sit on the couch on my heating pads and try not to cry until food was ready and then after we ate I sat on couch for 30 minutes and I was out of there and home to die. I forgot my after picture because I was in no shape to take one. I slept forever and woke up feeling decent and my boy dragged me out shopping on Black Friday. Then brought the grandbaby home with me to nap. My friend came over to put up my Christmas which I watched her and the grandbaby do and then I got ready and we went to Thanksgiving #2. A busy but not crazy day. Here is post 2.

Thanksgiving #2

image1Timage2his is the effects of a 2.5 hour party. Not really a party. Low key dinner with family. I didn’t even have to cook or clean. Just sit around playing with the grandbaby and visiting. I had a great time. I had been looking forward to it all week. Then I came home and the moment I laid on the bed it all hit me. Exhaustion, pain, headache, that bone deep weariness. I slept roughly 10 hours. I guess I don’t know what kept me going but we spoonies need to come up with a name for it. That thing that gets you through the holiday dinner or birthday party. That thing that let’s you answer “Fine!” So many times when you aren’t fine. That thing I just can’t put my finger on. Is it just sheer power of will? Is it determination? I don’t know. What do you guys think it is? Is it more than one thing? Is it different things on different days? Tell me what you think!

I wish I had taken a picture after the first one only because it was a more dramatic after shot but you can see the difference I think in the second set of pictures. I don’t think people without chronic illnesses realize just how much it takes out of us to do normal things. We tend to cover it up by saying we are fine or we are just tired and pasting on a smile. If we want them to understand we have to let them see. What do you guys think? Comment on this posting and tell me what you think. The second post got a good response on Instagram. Follow me @fibroscoop to join the conversation.

Feelings….

Feelings….

So…. I was working on my bullet journal the other day and I wanted to add a page of feeling words as a coping mechanism. We will come back to that later because I want to tell you all about my bullet journal. Anyway, I was looking on Pinterest of course and found this feelings wheel and while I was copying the words (which ended up only covering about a fourth of my page) I couldn’t help but reflect on the words I was writing. There are SO many emotions that we feel as humans and we have what looks like a lot of words there to describe them. Not all words are even listed either. And yet, we still struggle to express our feelings to each other. We still don’t to listen. We still fail to understand. We as humans on this planet together need to put forth more effort to love out neighbor. If everyone were to pay it forward daily. If everyone were to smile and say a kind word. If everyone were to make a new friend. If everyone were to help someone less fortunate. If everyone were to accept others regardless of their differences. Oh what a place this world could be. Just imagine….

Woo Hoo! They Like Me, They Like Me!

Woo Hoo! They Like Me, They Like Me!

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Guys, I mean guys, I am so honored.  This weekend I reached 700 followers on Instagram. Thank you! Thank you! Thank you! It just blows my mind. Not only does that mean that there are 700 people with nothing better to do than read my posts (kidding) but just think a minute…. those are 700 people who have a chronic illness or who love someone with a chronic illness. Minus the ones who just wanna see cute pictures of Princess Sophie of course!! Seriously though, I want to thank each and every one of you for sharing this journey with me and I hope that I have helped you in some small way at some point. Whether I made you laugh or cry or say, “Yes, me too!” and feel not quite so alone….. I am glad that I can be here for you. I am always available by DM if you need someone to talk to. I know how isolated you can feel. I know how sometimes you just feel like giving up. So message me if you need someone to talk to.  Or if you have specific questions. I hope to do more informational posts in the future. I just feel like there are so many of those out there and I prefer to let you see what life with fibro is really like and try to lend support to you when you need it. Try to make you laugh. Try to inspire you. Don’t forget. WE are WARRIORS!!!

 

I am a Warrior

I am a Warrior

I don’t know about you guys but I needed this today. Sometimes I forget that I am a fighter. Sometimes I forget that I can do this. Sometimes I let the pain win. Or the depression. Or the loneliness. Sometimes I need a reminder that I can do this. Sometimes I need a little push. Sometimes I need some motivation. Sometimes I need a kick in the pants. Because sometimes I reach my limits. The edge. The wall. The precipice. The outer limits. And sometimes I need a reminder to pull me back in. To prop me up. To kickstart me. To get me going again. To pull me back from the edge. So I have this poem in my journal. It is from Pinterest. It helps. I have a whole spread or three that help me on my bad days. 😉 What are some of your coping mechanisms fellow Spoonies? Comment and let me know. I love hearing from you.

Ugh…

Ugh…

Guys, that is all I know to say right now. I don’t even know where to start with this post. I want to talk about our government a second. I am in the United States. I am proud to be an American. I love America and all that it stands for. Right now though, I am disappointed. Disappointed in the government, the officials, even the lowly office workers. Also, I hate politics in general and am not for or against either political party. In fact, I have only a bare working knowledge of our government. I don’t watch the news.

So, I will try to keep this short while giving you enough information to get the full picture. In other words I will try not to not ramble on and on. lol When I got sick I was in school full time expecting to graduate in less than a year and start working as a teacher. I wasn’t expecting to be rich but was expecting an income to support myself and my two sons in addition to child support. Since my fibromyalgia and arthritis are so bad that I cannot sit upright or stand for more than 45 minutes to an hour a day, there is no way that I can work. Also my narcolepsy requires me to take a bunch of naps during the day. Throw in the cognitive impairment from these conditions and side effects from the meds and there is just no way I could work 40 hours a week every week reliably. I had trouble working 20 hours a week reliably and performing my job duties as needed. So right now I have no income at all. Therefore, I applied for disability, SSI, Welfare, and food stamps. Let’s start with food stamps. I had no choice. It was a short term plan til I could figure out what to do.

With food stamps I did qualify and do receive them. However, they count the money that the ex gives me to pay his part of the cell phone bill and his life insurance which was being deducted from my checking account still as income. Therefore, I only get about $125 a month in food stamps for me and one teenage boy. I didn’t qualify for welfare. At the time I was making a whole $300 a month though. I plan to reapply in a month. The thing that got me was that the case worker that I talked to acted like I was trying to scam the system. Yes, my mother and my ex have been giving me money to live on since I quit working. Obviously they do not want us living on the street or without power and electricity. This seems to make the government think they should continue to help me even though my elderly mother is using up all of her retirement savings to support us. She is almost out of money.

SSI was my biggest source of amazement. This was the first thing I called about and I was told flat out that since my mother and ex were helping us we wouldn’t qualify. Even if they stopped helping we wouldn’t qualify because they COULD help us. I asked what was supposed to happen. Were we supposed to be living in our car? On the street? What? The caseworker calmly said yes, you pretty much have to be to receive SSI. Ridiculous!!

I tried to apply for a program through my state insurance to have someone come in to the house a few hours a day to help with light housework, cooking, my showering, etc. I can’t get it unless I am on disability and SSI. So frustrating!! They make it impossible to get help when you really need it!

Ok, about my disability case. I applied in April 2017. I have been denied once for my regular case and twice on appeal. We went before the judge on appeal on September 12 and I was told I should hear something in a month or two. I think it is utterly ridiculous that it takes that long for a judge to make a decision on a case. It shouldn’t take more than a week and then she writes it up within a week and there you go. The length of the entire case just floors me though. It has been 18 months.

I can’t help but think about those folks out there with no Mom or ex to pay their rent or their electric and water until they get their disability. What are they to do? I cannot believe how our government is treating it’s own citizens. I understand that there are people who take advantage of the system but surely there are much more of them out there that need help. I can’t help but think of all the MILLIONS and BILLIONS of dollars we spend and have spent helping other countries or wasting on frivolous things that could help our citizens that need it. The disabled. The veterans. Mental health care. Something needs to change. Someone needs to help.

I think if you wanna make America great again you better start spreading some of that money around inside. Do a little refurbishing inside the walls…. Then look outside. But that’s just my point of view and it doesn’t account for much I know. I am just living the other side of the story, that’s all.

P.S. You might wanna give your employees a raise and some customer service training because most of them are just plain rude on the phone. There are a few nice, helpful ones. Mostly though, RUDE!

Taking Care of Me

Taking Care of Me

Sometimes we are so focused on our pain we forget to work on our mental health. Mental health is just as important as physical. SO many Spoonies deal with depression and anxiety on top of their pain. I am one of them. It is very easy to not notice you are showing signs of depression until you are pretty far down that road. It is helpful to do daily mood checks just to make sure you are aware of where you are. This challenge looked really cool to be. It is mostly self care ideas to help improve your mood/mental health. Anyone wanna do it with me? It looks much easier than the yoga challenge! I am starting Nov. 1. Come on! Let’s have some fun!!

The longest drive ever

The longest drive ever

So when last I left you we were in Orange Beach, AL and I was facing a grueling 8 hour drive back home with two boys. Two annoying 14 year old boys. LOL. They provided some entertainment to keep me awake at least. I was good for the first two hours and then I started getting sleepy. The boys were napping and listening to music with ear buds in. I woke them up and told them to keep me awake. We played a game that required me to think and drive. You would NOT believe how hard it was for me to think of a word on a particular subject starting with a particular letter and drive at the same time. Almost impossible. It was really sad folks. Like they had to help me with the navigation all the way home. I guess it at least taught them how to read road signs. LOL Anyway, we also stopped every 2 hours for potty breaks and for me to stretch/move/get coffee or soda and just take a break. By hour 7, we knew it was gonna be a 10 hour drive because of stopping so much and stopping to eat at Subway. I took a selfie in Subway. Wanna see?

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Yep, that is me laying on the booth seat. I ate in the car. I was dying of pain and had to just lay down while they ate.  The boys were embarrassed and people stared but I did not care at all. I had to. I didn’t have a choice. We got back on the road and about 45 minutes later (2 hours to go) my whole body clenched up in one big muscle cramp. I pulled off the first exit which didn’t even have a gas station. I jumped out and walked around in a field crying. It hurt so bad. I got my son to get my deep heating rub out of the car and told both boys to turn around. I was rubbing that stuff all over me. Sticking my hands down my pants and up my shirt. Everywhere I could reach. After a few minutes the cramp subsided and I could get in the car. I was afraid to take a muscle relaxer. I took Tylenol but wasn’t holding my breath on that one. So now we are going…..um….really fast… down the interstate and we have to put the windows down because the rub is making our eyes water because it has that menthol-type smell to it. The boys have their hoodies up and pulled tight where you can only see a tiny bit of their faces because it is chilly up here in Tennessee and we are going pretty fast. All I can do is laugh. I thought I was gonna have to pull over for laughing. We finally made it home and I literally had to roll out of the car and get up from my hands and knees. I came in and laid on my bed on my heating pads and didn’t move. We were finally home!!!

P.S. One week later and my car STILL smells like that rub!!

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We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

It was the best of times, it was the worst of times….

It was the best of times, it was the worst of times….

So, the last time we spoke, or I wrote, LOL, I believe I told you I was getting ready to go on a vacation to the beach…. well, it was a heck of a vacation….maybe you heard about a little guy called Michael?IMG_1905 img_1918.pngWell….. he passed by us and didn’t do any damage or flooding where we were in Orange Beach, AL that I am aware of. See that blue push pin on the left hand side of the hurricane in the picture? That was us. We had a lot of wind and some pretty rough surf. The beaches were too rough for swimming for a couple of days. Plus that blowing sand will really take the skin off of you. So we spent a few days at the hotel and doing some shopping and stuff around town while waiting on Michael to get on by us. Thankfully, he was a minor inconvenience to us and that is all. We were lucky compared to some.

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It was beautiful when we arrived and we were so excited by our awesome PENTHOUSE condo. I found us a great last minute deal on VRBO and then called the leasing agency directly instead of booking through VRBO. Saved us some money. We were on the 14th floor with an awesome view of the ocean and the bay.img_1856img_1857 We sat on the balcony to eat, and do almost anything else when we were in the condo because we just couldn’t take our eyes off that view. This fancy condo was a real treat for a couple of single Moms and their 5 kids who had never really been on a beach vacation.

img_1887So, we got in a little time at the bay before Michael came and then we did mostly indoor activities until he left on Wed afternoon. img_1855Then it was beach time!! It was totally fun and totally relaxing except for the  stupid biting flies. Even the OFF camping bug spray didn’t keep them off of us. They eventually ran us off and we had to settle for the huge pools and the lazy river at the resort. Ho hum! Lol, I don’t mean to brag guys. img_1826Sorry. It was just a very nice vacation as far as relaxing and spending good times with good friends. 

So…..How did I do health-wise? Well, that’s where the worst of times comes in. As far as the fibro goes I did okay until the ride home but we will come back to that. First of all, not complaining, discussing something that we, as chronic pain sufferers have to deal with in real life.  img_7340So, even with the hurricane coming in, I only had a little bit of fibro pain the night and morning of Michael’s arrival. img_1957Very easy to handle. I do not know if this is because the weather pattern is different in Florida and with hurricanes than it is with how the fronts come in her in East TN in the valley or because I had that big old Jacuzzi tub to soak in all the time or what. I did have a lot of arthritis pain due to activity level. The walking on the sand to look for sea shells made my lower back, hips and feet hurt really bad. I could go float in the ocean for a bit and take the pressure off and I would feel better and could go look for shells a bit longer but at the end of the day I was in major pain. Also, every time we went to the pool, the family wanted to go to the one with the lazy river which meant climbing a bunch of stairs because that elevator was out. img_7300img_1932So I had hurt feelings that they didn’t care how that affected me as well as pain from climbing the stairs. I chose to stay in the room a time or two because I just could not participate in activities. Well, more than a time or two. I spent quite a bit of time in the room. A lot more than I would have liked. So my friend had to be back on Saturday and they left Thurs evening. The boys and I stayed until Saturday morning. This meant that I had to make the difficult 8+ hour drive by myself. Originally we were all going back together so she and her daughter could do most of the driving while I laid down but I hated for the boys to only get 2 beach days. We decided to stay and if we had to break the trip back up into two days that was ok. The good news was that I made it in one trip. This post is really long though so I will tell you all about our hilarious trip back tomorrow. Promise. 

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We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill

 

Torture Tuesday (My day of Pampering)

Torture Tuesday (My day of Pampering)

**Disclaimer: None of these pictures are of me or anyone I know. They are random pretty people off the interweb I found in a Google search for images.**

Guys, I try to be understanding, you know? I try to remember that no one knows the hell we go through in our bodies but us and that it is pretty near to impossible to imagine, but, holy heck, sometimes I get so tired of being the understanding one. You know?

So here is what happened….. My best friend and I are getting ready to take a 9 hour road trip with 4 teenagers (2 boys, 2 girls) to go to the beach for a week. Now my friend will do most of the driving and the girls are going to drive their own car so we won’t all be jammed in one car. Whew! That’s a relief. I am however really worried about being able to make it through this vacay still on my feet. This is my first one of this length since I got sick. Last year we went to Hilton Head for 3 days and it kicked my butt. Anyway…. I was trying to get all my “stuff” done early this week so I could rest Wed., Thurs., and Fri., then packing up with help on Sat. I ran errands Mon. morning then came home around noon and napped the rest of the day. That left me with a ton of stuff to do yesterday!

So…. first, I needed to visit some thrift stores to look for a push wheel chair or transfer chair. I need a way to make the 300 yard trek from the hotel to the boardwalk to conserve my energy and  protect my back because walking makes it hurt. Then I was A shopping cart full with groceriesgoing to get my eyebrows waxed because EEEk!, grab a couple groceries at WalMart that only come from there,  get a pedicure because again EEEk!, pick up a prescription, get a massage/myofascial therapy to help with back pain, and go to Super Target for sunscreen, groceries that only come from there, check for clearance sand toys, stuff like that. Whew!!!! That is a lot for a girl who is only out of bed for an hour or so at a time!! So I decided to cut the thrift stores out. I had already visited a ton with no luck and Walgreens had one on sale $50 off and I had $20 reward to use, so it wasn’t too bad. Then I bumped into my Mom at the Hair salon and begged her to get the Walmart groceries for me while she was there. Grocery shopping is the worst on my back so I was very grateful to her for doing that for me. Ha! Three things off my list.

Now, waxing. As you can imagine, that is pure torture with my sensitive nerves. Fibromyalgia makes your nerves about a hundred times more sensitive than the average fdgaswfdascdascaspersons at least. Sometimes we are hypersensitive and it is even worse. Today it was bearable but barely. The stylist always laughs at the faces that I make when she pulls the strips off. I also make little screams. I apparently scared a teenager out of trying waxing yesterday. Sorry honey.  It isn’t that bad really. Only lasts a minute and much quicker than plucking. My arms are so weak though that I can’t pluck my own eyebrows anymore. I have to go get them waxed about once every 3 weeks. Okay, torture part one, Over.

IMG_1733Now on to torture part 2. img_17341.jpgThis one is not too awful bad.. Lol. Getting a pedicure has it’s good parts. Soaking my feet in the nice warm water helps take out some of the toxins in my system and just plain feels good. However, my feet are very callused and also I get the one that comes with the sea salt scrub so that isn’t pleasant. Overall, the pedicure is one of the better parts of the day with minor torture thrown in. I got my nails painted my favorite shade of blue and she painted little palm trees on the big toes in honor of going to the beach. I have never done that before.

trigger-point-therapy-nycSo then I rush across town to the massage therapist. Now she is not just any old massage therapist. She is a mean massage therapist. Lol. Just kidding. She practices Myofascial Release Therapy which she learned from the guy who came up with the treatment. jkgghjkfhgjdghsfBasically, it incorporates massage and PT and she digs right into those trigger points to get them to gthjghjkljklhjkfrelease and relieve the pain. At least that is what it feels like to a layman. I have a few pics I am going to post but if you have140527_legmassage fibromyalgia I definitely recommend you look into it. I cannot afford to go to her as much as I would like but I can always tell a difference after she works on me. It hurts like heck. Sometimes I groan or ouch or make a little squealy sound, but I really try to not be a baby about it because it really helps. It kills me though when people are like acting all jealous about me going to get a massage that is torture for me and I try to explain but they are just like oh yeah, sure…..

After all of that I finally get to go to Target (Heaven on Earth), and I really just want to go home and go to bed. I know that if I do I will have to come back out another day and do it and I already know I will be laid up tomorrow. So off I go to Target. I use the zippy cart and barely make it through.yhtyghrfg I finally get out of there and home. I have been going from 9 am til 4 pm. I lay down immediately and sleep til 9:30. I only get up then to use the bathroom when my kids wake me up to make sure I am ok. Lol Before I got sick I could have done that and come home feeling refreshed and happy and ready to tackle anything. But now I just feel like I have been hit by a truck and I could sleep for a week. I definitely overdid it. Such is life with Fibro. It really sucks. Tell me about your experiences. Do you feel like some of the things you used to love before are now torture? Can you handle massages? How do you handle it when you have to put in a full day? How do you prepare for a long trip? Leave me a comment guys. I would love to hear from you!!

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We CAN do this!!

We WILL do this!!

Now GO!!

Gentle Hugs,

Jill