Chronic Illness Survival Hacks

IMG_6234Here are nine chronic illness survival hacks to help you keep moving forward on your chronic illness journey. Hopefully the following can help others to cope while living with chronic illness. There are important things I try to remind myself of daily, thinga that have helped you get me this far.

Number one: Setting mini goals. Mini goals are simple things for those who are not chronically ill. Getting up and getting dressed is a mini goal, so is eating, tidying etc. Some days these are big goals specially when we are low on our “spoons.” As humans we need to feel like we are accomplishing things. Accomplishments bring us joy, and we feel like we have contributed. We all need to feel like we are contributing.

Number two: The need to create. This is an important part of our existence and experience, we all love to create. History is full of creators. Being creative helps to relive stress, depression and anxiety. Three things that many of us chronically ill warriors face. I love to paint, I lived for painting. Now that I am loosing mobility in my wrist (it’s chronically dislocated) and I am loosing the use of some of my fingers I will start to tape a brush to my hand to be able to continue to paint, there is hope. There is always hope, there is always a way through the pain, the hardship, and the storm that is life.

Number three: Find your purpose. Your purpose is something that keeps you on track mentally. Your purpose could be making others laugh, making music, making YouTube videos, being an activist, being there for your friends, painting, creating, whatever your purpose is, do it. Sometimes we search for our purpose when it’s right in front of us, your purpose could be educating others about your illness. We all have a purpose, we are all of value, we all need to do what feels good for our hearts and minds. Do you know what your purpose is? We all have one and I’m sure yours is amazing and will fill your heart with warmth. A purpose is something that makes life exciting for you, it makes you feel good inside. A true purpose makes you happy, so do what makes you happy.

Number four: Reach out to others when you need help. I used to hate asking for help. Sometimes I still try to not ask for help, but I do it. Prime example is a recently black out, I convulsed for a while and got stuck where I was because I  couldn’t use my body. My husband had to pick me up and move me onto the couch. Even though I couldn’t ask for help, he helped me. When we can’t do things ourselves it can be frustrating, or infuriating, but some people are blessed with the gift of being a caregiver. These people are those who are happy and willing to help. Asking for help doesn’t make you less of a person, asking for help takes courage. Please know you don’t do this alone.

Number five: Take each day as it comes. One breath at a time, take life’s challenges in stride. You do not do this alone. Ask for help. Talk about your battles. You can do this. You were strong. You are brave, beautiful soul. Your inner strength surpasses the strength of the physically strong. Continue to believe in you, you are a warrior of the invisible.

Number six: Being grateful. Being grateful is a wonderful tool in learning to move forward. It is easy to get caught up in the negative, all the bad that is happening to us. What are you grateful for today? I remind myself how grateful I am for another breath of life. I have been blessed with the vision to witness random acts of kindness. I am blessed and grateful for all those whom have helped me and helped others, thank you to all those people for making a difference in this cold dark world.

Number seven: Find joy in the simple things. The simple things in life that bring me joy are the ocean, kitty snuggles, moments with friends and family, doing some cosplay. What are things that bring you joy? The things that bring you joy are things that need to be in your life. If it’s watching a cartoon, or crocheting, whatever it is don’t deprive yourself of something that brings you joy. Your happiness matters. Stop telling yourself or others your a burden, would you say that to your friend/lived one!

Number eight: Live life with hope. Live life well you’ve got it, do the best you can with what you have. Never give up on you. Believe in yourself always. I will always hold hope in my heart for all my fellow invisible illness warriors. I never give up, hope will live in me forever. Hopelessness cannot exist where there is hope. For where there is hope hopelessness cannot enter.

Number nine: Live truly in the moment. Living in today is vital. If we obsess over tomorrow and the tragedies that await us it steals all joy and hope from today. Our peace of mind is robbed, and we are left in disparity. Don’t look into yesterday it’s a memory, and tomorrow is the unknown, living today means clearing your mind of the days past and those to come. Thinking about other things distracts us from today and the gifts it brings, today is truly the present. Live in today for today be open to its gifts.

The ache of the insidious pains invisible illness brings, helps us to unite together in chronic pain. Being united helps us find our invisible demons together we are strong. I always remind myself that for all we go through we are sure a strong bunch. Rare disease, chronic disease, and invisible disease we are united in our illness send in our fight. We are not alone in anything that we go through. Every challenge we face makes us stronger and makes us braver.

Many times in life things do not go as we have planned. Remember to continue to carry-on. Take life a day at a time. Live from one moment to the next. Always remember how far you have come, and remember to never give up on yourself. I cannot change my diseases, I accept them for what they are for what they have done to me and for what they will do to me. This does not mean I quit, I will continue to live life to the best of my ability.

I remain hopeful now and forever.

💗Anna

Dont forget I am shaving my head on August 31st to help raise awareness for a Ehlers-Danlos Syndrome. Learn more about it here https://annawerrunblog.wordpress.com/2017/08/13/shaving-my-head-for-ehlers-danlos-syndrome-awareness/

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Shaving My Head For Ehlers-Danlos Syndrome Awareness

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In hopes of raising awareness for Ehlers Danlos Syndrome, I will be shaving my head and raising money for EDS. I will be taking pledges and will be donating all the money to The ILC Foundation in Toronto. The ILC Foundation is a Canadian EDS Foundation, they also help people living with chronic pain, and have a research division. Learn about The ILC Foundation here. http://www.theilcfoundation.org.

IMG_5991Ehlers Danlos Syndrome is an inherited connective tissue disorder, it is incurable and something that I live with. EDS means I am lacking the glue in my connective tissue to hold me together. I dislocate my joints regularly, generally daily and nightly. I wear protective braces to help aid in my mobility. EDS isn’t just about joints, it affects my ability to eat, sleep, and function on my own.

 

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I am disabled because of Ehlers Danlos Syndrome. This condition affects many people and causes it’s suffers to feel isolated, trapped, confused and sometimes suicidal due to not being understood. My hope is to help bring about change in any small way I can. Connecting fellow suffers to the resources we need is vital for our care.

Learn more about EDS it’s types and prognosis here http://www.theilcfoundation.org/2017-eds-international-classification/

I will donate all funds to help aid in research and awareness. I’ll be taking pledges now until August 31st. You can mail your donation to me via cheque make it out to “The ILC Foundation.” Please mail cheque to

Po Box 36083 Esquimalt
Victoria BC
V9A 7J5
Canada

I will mail all cheques to them in one envelope the day of my head shave!

You can donate your pledged amount right to The ILC Foundation here. http://www.theilcfoundation.org/donate/ please let me know how much you are pledging so I can share with everyone how much we raise by the 31st of August.

I will video tape my head shave and put it online. Let’s help raise awareness for Ehlers Danlos Syndrome, let’s make a difference for the younger generation affected by Ehlers Danlos, those undiagnosed and those living with the rarer forms of EDS including the deadly vascular EDS.

Thank you so much for your time. Collectively we can bring about change, together we can make this invisible disorder visible. I remain hopeful now and always.

 

Join me live on instagram August 31 at 3:00pm pacific standard time to see my shave my head. You must be following my instgram to get the notification. Let’s help make a difference together. Can’t afford to donate? Share this blog post and join in the shaving of your head! Tag me and use the following hashtag #ishavedmeheadforeds time for me having hair is ticking away. You matter and your story matters. Never give up or into your illness, and don’t let others treat you like poo.

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Farrar Norwoods Story Living With Vascular EDS

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Farrar lives with Vascular EDS, please be respectful of her and her journey as she shares her story in essay format. Learn about Vascular EDS here https://www.ehlers-danlos.com/eds-types/#vEDS

Hello my name is Farrar Norwood, I’m 28 years old & I have Ehlers Danlos syndrome type IV (vascular type). My life changed dramatically when I was hospitalized in 2016 with severe pain in my abdomen. For my family and myself this was not our first rodeo, so knowing what we knew from previous encounters we rushed to the E.R.

I was diagnosed with vascular eds after the beach trip in 2016. It was a typical day there, playing in the ocean with my husband jumping up and down with the waves getting knocked down. I didn’t think nothing of it we continued our day, we had lunch and hit the road back home. Within 30 minutes of arriving to the house I started getting sick feeling nauseous having stomach pain everything!!! Long story short I was taken to the ER where they began to run tests. They asked me even asked if I was in a car wreck because my pancreas and another organ were damaged pretty bad causing the pain. It was that day a team of doctors came in and gave me the news that I had vascular EDS.

When I was 10 years old I got really sick, & as any mother would my mother took me to my paediatrician. He would exam me only to find I was in a lot more pain than I led on. So after a short visit my mother was told to take me straight to the hospital. I was 10 years old but very observant, so I knew something was wrong but didn’t know the extent.

Needless to say, 3 months later I was leaving the hospital with a colostomy bag and a diagnosis of diverticulitis. I was sent home with a nurse so I could get the proper treatment for healing also to teach my mother and oldest sister how to care for me. I was devastated. I was a kid who had never even heard of such thing. To be exact the Drs said I was the youngest child in history to have ever had to go through so much.

All through out middle school I was learning to live the lifestyle I would always live. I was using the nurses restroom instead of the other one, for my own privacy which was really nice of them now that I think of it.

But being treated different was weird to me and I didn’t like it. People didn’t understand and never really asked either. Flashing forward a few years later I had gotten things under control so I thought. Now at this point I was 21 and I am back in the hospital with the same excruciating pain. After a few months and a lot of pressure on the family I was able to go home once again.

Being properly diagnosed I was back in the hospital once again at the age of 26 with the reoccurring pain. .. It was right after a beach trip on the way home when I started feeling really bad. .. So knowing what I know I stay home hoping it would go away knowing I couldn’t rush every time something alarmed me.

After awhile I knew things were getting worse so my husband took me to the er. That day on April 26 after a lot of testing, crying, poking and vomiting, I was properly diagnosed with ehlers danlos syndrome. I was upset to say the least. .. Now dealing with something I never heard of i also had to face that they were wrong the whole time about me having diverticulitis.

Is my whole life a lie? How can this happen to me? Why me? Why now? Why my family? Confused and in shock my husband and I took the news the best way we could. I’m a firm believer in God so 8 I took it a lot better than he did. He never showed any weakness but I knew He didn’t understand. But thankfully now we know, & this just explained all the un explainable things I was going through. So for me it was a sigh of relief but not a great one.

At least now I was aware of what was going on and why. So I was thankful that God blessed me with drs who knew what was going on. So how was my life different before??? Well before I was young wild and free. . now I’m tired, sore and crabby. Lol. But for the most part I have come to terms with my illness and I live everyday as I did before diagnosis. Happy blessed and thankful. Just a little more aware of things that is all.

My typical day goes like this I wake up, I automatically thank the lord for blessing me with another day. I take my dog out to use the restroom, I brush my teeth, Shower, take my meds, and start my day. Everyday is a challenge and everyday I never know how I will feel. Some days are great some days are horrible. But everyday is a BLESSING. So hurting or not I’m thankful.

The hardest part for me in this whole shebang, is not being able to do as much as my mind and soul thinks I can. For instance, I love to bake. Baking and decorating cakes is my passion so being I have huge family I get the opportunity to live out my dream quite a bit. But after doing a cake for hours and hours at a time & on my feet constantly I pay tremendously the next day.

I wake up exhausted as if I never rested and it takes about 3 days to really feel like myself again. Which makes me sad and has led to a slight depression. So things are a lot different now but that doesn’t mean I’m useless, I’m just not as untouchable as I thought I was.

God has brung me this far, I don’t see him leaving me now!!! So no, I can not keep up with others, & I don’t try either because it would kill me and I’m here to live not to be like anyone other than myself!!!

So if there is one thing I would like to tell others it would be to embrace what God gave you and live life the best way you know how, because regardless of what we are made of. We are all FIGHTERS and here to make one hell of mark on this disease. We can show the world that just because our body is weak doesn’t mean our mind and passion to live is!! We are all beautiful individually designed zebras ready to take on the fight!!!!!

“Thank you for sharing your amazing journey with me and the world. It is for sure best to do what is best for you, resting and self care are for sure important. It is a wonderful out look that you have to be thankful for life. Sending you hope always.” -Anna Werrun 

MCAS Masto Life Hacks For Survival

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Masto tips by My lovely friend and me. These tips that have helped us to stay safe. Living with mast cell disease for me is like being allergic to the world. At any given time, from any given thing I can experience anaphylaxis. I find that explaining it to people as, “I’m not technically allergic to everything, but because the diseases my body thinks I am allergic to everything. Thus resulting in anaphylaxis.”

1. Masto/MCAS tip. If you are scent sensitive.
Masks need to be replaced every 4-6 months. If you use an RZ mask the filter needs to be replaced every month. Carry a back up mask, store your mask in ziplock bags to keep the filters fresh. Use one mask for 2 hours then switch your masks. If someone is to spray any scented products around your mask this will compromise your mask. It is important to wash your mask in scent free gentle soap. Washing your mask can help to prevent a infection on your face from the condensation inside of the mask.

2. More for scents. Fellow mastos have you ever thought of activated carbon? Like the stuff you use for a fish tank!? Again a big thanks to my friend for pointing out that putting things that have absorbed smell into activated carbon can help take the smell out of it.

3. Air purifiers. Using air purifiers has saved my lungs. Air purifiers can help to reduce the amount of smells we breathe in especially in a apartment. Suggested air purifiers http://www.usairpurifiers.com/air-purifiers-use-chemical-voc.html

4. Reduce stress. Do something you truly love or something that is going to help you. When we are sick many times we forget these things. Even if you start out with something simple this can make a huge difference. Painting, or writing are two things I enjoy. I will also go for a walk (if I am able to).

5. Avoid spicy foods. Spicy foods are Known to increase and make mast cells more angry. This doesn’t just mean not eating them. It means not being in a public place that cooks foods like this, and also avoid things like curry, as it is extremely high in histamine.

6. Be gentle with yourself. When you have brain fog remember this happens to all of us Mastos. You aren’t alone. Many of us get forgetful and confused, try your best to not get angry with yourself, you are doing the best you can in that moment. You are worthy of love and respect from others, but most importantly yourself.

7. Go scent free. Unscented soaps, dish soaps, body products, natural tooth paste/unflavoured no Floride, no dyes , I truly at first did not think that the smells of body products affected me but they truly do, they make me anxious. Throw out the smelly products because they can increase risk of reactions, sometimes this means getting rid of clothes, blankets, furniture, because smells can get caught in materials. I would for sure recommending not to smoke, smoking is terrible for ones health all ready and if you have MCAS this will only increase your risks of bad reactions or anaphylaxis.

8. Try the elimination diet (if this has been recommended by your doctor). Sometimes the yummy foods we are eating can be causing the problem. I have personally cut a large majority of things out of my diet to help me feel a little better. It isn’t a cure, but it does help. I also take cromyln before I eat and this can sometimes make a difference in how you feel after you eat should you have gastrointestinal involvement.

Remember you have great value you and your life matter. When we do our best to educate others about our illnesses, we can help change the worlds perception about rare diseases. You can do this. Remember you are a fighter, you aren’t alone in this, not now not ever.