Chronic Illness Tips for the Hard Days

 

Sometimes physically difficult days can also lead to mentally and emotionally challenging days, and if you’re alone or unable to distract yourself, these days of discouragement can turn into weeks of depression, so I want to share some tips on what to do on the difficult days — this applies to spoonies, tubies, mental health patients, and really anyone in general– everyone has bad days!

  1. Get up and change your clothes – This is one I’m often guilty of during my homebound/bedbound times, so I know it can be one of the small hassles we often put off when we are having a bad day or an unmotivated day due to pain, nausea, fatigue, whatever it is for you that day. That said, sometimes just putting on a new pair of PJs, a super comfortable t-shirt dress, or sweatpants, whatever it is that you’re comfortable in, can make you feel a bit fresher and lighter, ready to take on the rest of the day (in bed) 😉
  2. Self care – simple at home or out and about, face masks, nails, Epsom foot soaks, whatever your favorite thing is—
    1. showers optional if you don’t have the energy – one day doesn’t kill ya. (neither does 2 days….3 days? 😉 ) I’m no shower person w/ POTS and GP, but the body adjusts amazingly when your body is adapting to changes like these. Buy some great shampoo and then dry shampoo & leave-in products and you can easily get away with washing your hair once or twice a week. It takes a bit of time, but your hair starts adjusting and working to stay clean longer.
    2. Some people love doing their makeup, even if it’s just for themselves at home! If it makes you feel good about yourself or makes you feel more like yourself, do it! Lay in bed with that red lip stain, work it girl.
  3. Even taking a walk or doing some stretching can refuel both mentally and physically – laying in bed all day/all winter can cause more pain…. Easier said than done, but finding your favorite way to get up and moving — walking, dancing, yoga, biking, etc. — can be great for you in so many ways.
  4. Call up a friend—just have a movie night or go get your nails done, doesn’t have to be crazy night out, just some fun, time to enjoy yourself and for a moment, maybe, forget how crappy you feel.
  5. Dogs are top notch medication/therapy and the most reliable members of our support systems 😉 Find a dog, get a dog, rescue a dog, steal a dog, borrow one… they’re everywhere, and they need love as much as you do!
  6. Listen to music or get out your favorite coloring book or paints and use that creative brain in there! Sometimes all you need is a little bit of a distraction, a different focus for your brain, even if it’s just for 15-20 minutes!
  7. Take a drive. Cant walk? Take a drive with your family/friends/caretaker and just get some fresh air, get out of your house for a little while. See the outside world.
  8. Do YOU. What makes you happy? When do you feel your best physically and/or emotionally? Whatever that is, do it. Drop what you’re doing, take any meds you need to / can so you are comfortable (ish) and follow your spirit, your heart—your body may hate it, but sometimes an outing or a self care distraction can do you wonders.

 

Follow your heart, listen to mind and body, and don’t be afraid to express your emotions. If you can, talk to your parents, siblings, significant other, or friends/loved ones. You can also find so much support through online support networks, one huge gift that technology has shared with us; friendships with others with your conditions can be incredible, its a feeling of life long friendship with someone you’ve spoken to online for a few months and then in the years to come, through your worst flare ups and your toughest, lowest times you are being supported by someone you’ve never met in person, but someone who becomes the person.

Find your happy. Find your happy in activity, find it in hobbies and in friends or animals, in art or cooking, in working or advocating, but most importantly, find your own happiness that comes from within your own self. Love yourself, care for yourself, and don’t doubt your strength. When you need to be reminded of your worth or your strength or your beauty (inside and out), remember this, remember that you are your harshest critic, but you are strong enough to push through anything if you are strong enough to live with chronic illnesses. There’s nothing harder than this, so stay confident and have faith in yourself, care for yourself in any way you need/want to, and remember that YOU and your health, mental and physical, come first. You are worth it, worth so much more than any words I can put together, so I think I’ll call it here:)

 

 

My Holiday Inspiration

I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.

The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)

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Christmas Paintings!

Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.

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The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…

” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
-Carolanne Monteleone

My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.

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Decorated IV pole

Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).

Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.

This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.

Spread love. Laugh endlessly. Find your happy and share it with your loved ones.

Happy Holidays!

Recovery and Discovery: A New Idea

My recovery process from having my new feeding tube placed (switching from a GJ to two separate tubes, a g and a j tube) has been really challenging. Due to some surgical complications and my connective tissue disorder, healing has been difficult and I’m still in a lot of pain. I’m lucky, though, because I have an amazing support team at home who are here for me and care for me no matter how long it takes; not everyone has that.

Because I’ve been having such a rough time healing and I’ve been in bed for so much of the last 4 weeks I’ve had a lot of time to think; through the online support communities I’ve seen so many people go through these diagnoses and tube placements alone. I just can’t stand to think of how terrible it must be to have to be your own support system in times like this; for two weeks I couldn’t even get out of bed or walk on my own, I still can’t bathe on my own or prep all my meds, feeds, and fluids. I’m dependent on my parents for almost everything, for individuals who have to have tubes placed and don’t have support systems and don’t know much about feeding tubes (who does if you’ve never had one, been on the online pages, or had a loved one with one?), this can be an extremely scary and challenging adjustment.

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My support system 😉

What I’ve decided to do is start an organization/nonprofit that sends packages to new tubies—people who are getting their first feeding tube placed—so that we can give them some comfort and some of the “tubie essentials” to get started with. This would include things like tubie pads, microwaveable heating pads, cute masks, pill crushers/sorters, journals to write symptoms in, allergen free, natural soaps, bath bombs, etc. I’ve compiled a list with more products, but we are looking for anything comforting for someone who just came out of a tube surgery (no food!).

Right now, this project is in the “just a dream/just getting started” period as we try to find people willing to donate products to our cause. We are asking small, spoonie geared businesses as well as local businesses who make things like soaps, hats, blankets, etc. So, if you have any interest or know someone who might, please let me know! There’s absolutely no pressure to donate, though!

I will also be putting the profits from my paintings into this project (once I turn a profit!), so if you’re interested in looking at my art, please do! It’s posted on my blog in the lifestyle section under “My Art” 🙂

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I wanted to share this with you all as it will be something I’m working on a lot for now, so I’ll try to keep you posted! This is a way for me to help others and be productive while hardly leaving my room—as long as we find donors! So thank you so much for reading and I can’t wait to see where this is next time I update you!