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Introducing myself #fibromyalgiawarrior #Grief #Diabetes

Happy Earth Day everyone. I have been here just a few weeks now. My name is Dany (she/her/they), 58, married lesbian. I have insulin dependent type 2 diabetes (although in todays new understanding, I should have been type 1.5). Diabetes affects everything and is affected by everything, hmm sounds familiar since Fibromyalgia is the same. So I have lots of fun with that. So, I was 24-26 when I got the diagnosis for Diabetes. I only got the fibromyalgia diagnosis in January 2020, after having knee replacement surgery in January 2018. I had no idea that I had Fibromyalgia until the surgery turned it up full blast! Both my full blood sisters have it. But it wasn’t something we spoke about. I’m the oldest and went to live with dad, they stayed with mom. It was only in adulthood that I got to know them. And we lost one in 2009.

I would like to talk about Fibromyalgia and grief. 2020 was a bad yr for most of us, but I lost my dad, my best friend, the son I helped raise (previous relationship), then my mom in 2022. Plus I move 500 miles last June. I’m from Central Virginia and now I live 11 miles from Lake Ontario. Grief itself is a flair trigger and grief comes in waves, unexpected. Tracking my flairs becomes hard because it’s not always a traditional trigger. My blood sugar affects and it is affected by my pain. I have now tinnitus, which I have been able to correlate with my pain levels, the higher and intensity of my ear ringing, the higher my pain levels are.

So that’s a lot to unpack 😁
the photo was three days ago

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My Invisible Illness

I would like to open up about my invisible illness. I first realized there was something wrong about six years ago when i came to New Zealand in couple of months I got really sick had this persistent pain in my body and I kept getting this shooting pain from my neck to lower back. My pain became more widespread, more frequent, and more intense when I was at university.

I went to several doctors and specialists had several exams for past 6 years finally I was diagnosed in 2022. The neurologist gave my invisible illness a name Fibromyalgia. I was finally relived they found what actually my illness is however it is a chronic illness which is lifelong and has no cure and also accompanied by chronic fatigue and 100 other symptoms.

Living with fibromyalgia means living with a chronic pain condition that greatly influences daily life. I feel pain all of the time and this affects my ability to do day-to-day tasks.Every task I choose to do has a trade-off with another. For example, if I choose to cook something, doing the laundry becomes more difficult.

As soon as i was diagnosed,I was forced to slow down all my activities both in personal and professional life it had gotten so worse that full right side of my body from neck to feet was in so much pain i could barely move, close my fist or hold a cup or grab the spoon to cook or eat.

Hence i had to make so many changes in my life to gain back strength and mobility slowly back to my body.I had to start taking different medications and therapies with many trials until my doctor found what worked better for me, many meds I was on, messed with my sleeping pattern made me feel nauseous and dizzy whole day and others messed with my stomach lining. I tried to work out because I felt that staying active changing my diet to vegetarian would help me sadly it worsened my symptoms even more. The most challenging aspect of fibro, for me, would be the fatigue, since it prevents me from doing a lot.

Unfortunately, there are not too many medical experts in New Zealand who have done research to understand what I have, and how it affects my daily life. My husband is my number one supporter and he helps me with my stress which is a trigger to pain, but there are also those who don’t understand or care to, so I just distanced myself from those people. I will continue to remove such people from my life, whether blood related or not, if you are not concerned about my wellbeing then I don’t need to have you in my already small circle.

In the last six years there has never been a day my body was without pain. I dont even know how it feels to be without pain anymore. I can’t be on meds 24*7 so i try to get as much rest as possible. As the meds have other side effects which causes other health issues.Honestly, i have tried all the pain killers in the world none of those have ever made my pain go even 20% less . There are times when I feel like nothing works and then i started to research and study on this illness myself.

With my findings and study for months i found out that lifestyle management is the only solution with people who have chromic illness. Since western medicine doesn’t have any cure i studied Ayurveda and gain knowledge around it and observed myself by doing trial and errors with Ayurvedic diet and practising spiritualism as a result to balance and manage my lifestyle Ayurvedic food diet which works for me in subsiding symptoms related to fatigue and stomach lining. Spirituality also really helped me such as meditation and yoga in order to focus on the positivity around me and to push myself to keep fighting with my body in order to live my life to the fullest.

As far as being open about my illness & symptoms, I hate to complain, because I know it can be annoying to hear someone talk about how much pain they are in daily, so I keep it to a minimum. I hate to hear that it will get better, when I know it’s not going to get better because there is no cure. So, I had kept it to myself. Remember to be kind to people as behind that smile we don’t know who is fighting a battle not everyone likes to open up about their struggles. I have had people commenting on my life about gaining weight or not going out or visiting families and friend. Last six years has been a roller coaster ride for me. I have been faking being okay!

My biggest battle is the pain I deal with daily, but the biggest is putting on a brave face, getting up and starting my day and trying to keep up with my daily responsibilities either personally or professionally. There was many moment in my life where i would want to scream at the top of my lungs. I just have no control over this illness that has taken over me and i would want to take my life. Then i look around and see I have family who i love dearly, and one look at them, tells me that my life is important and worth fighting for.

Honestly taking it one day at a time, is how I balance my illness in my personal and professional life, there is no other way. I had always been a high achiever and proceeded to put a lot of pressure on myself in every aspect of my life hence people always say i am lucky whenever i attained my goals whether it was graduating with academic excellence being the top scholar or getting a corporate job at management level or buying a brand new home or travelling around and buying luxury items at early 20s it is not luck it is hard-work sacrifices and most importantly journey of fighting with my own body, health and mind to live life and achieve of my dreams. I just want to say to each one of you if your healthy you are lucky one as Health is Wealth!!

I would like people to know and understand that this condition is real and it’s depressing- please be supportive. If you find that you can’t be of any help to that person suffering from Fibro, then remove yourself from their lives, and spare them further pain.

My words of encouragement for others who are living with Fibro are to try to find a doctor who is caring and believes in your pain, and work with them in finding medication that can help you control some of the pain, because right now, there is nothing that take it all away. Continue fighting, and don’t give up, we have people who need us and depend on us, so we must find a way to fight to continue living. And lastly we should all come together and help us spread the word, and know that you are not alone.

Lastly, this message was not for sympathy it was for awareness in the community which is must needed.
#Fibromyalgia #ChronicPain #fibromyalgiawarrior #illness #Fibro #healthiswealth #Bekind #ChronicIllness #symptoms #treatment #RheumatoidArthritis #FibroFog #Medicine

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Sometimes you have to show yourself

#SuicideSurvivor #Survivor #fibromyalgiawarrior

There are times when you have to say theses words…

Get up

Get up

Get up

Yes not every morning is filled with happiness and bliss. Sometimes you feel like you are so tired but you don’t know why. That’s when you rest your head you rest your body but you don’t stay down you rise.

Rise and shine

The call you have times when your in pain you have times when your literally unable to move.

So you rest for a time in that time IT is up to someone else to shine. While you take a moment to sit back watch and smile.

Being an independent is hard on you for what ever reason you think you have to be part of the process. The truth is once you have shown the process others know how but will let you do all the work until you ask them to do it or you give it over to them to do.

Then IT is not up to you IT is up to them!

So when you burn 🔥 Out you need that rest there is no reason to busy about. Just rest and without a doubt everything will work out.

The main thing is you rise!

Don’t stay down…

Get up

Get up

Get up

Even if for a bit today and a bit tomorrow your still UP!

Someone out there needs this today!!

Your important

Your not alone

Your worthy

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I saw this picture and it best explains my situation. And I'm sure it explains some of your situations too. But the pain is just a small part of having fibromyalgia isn't it. There is also the insomnia, chronic fatigue, restless legs, nausea, IBS, dizziness, frequency with to urinate, trouble finding words(either writing or speaking), brain fog, depression. I could go on but I think that's enough of that for now, because if we have fibromyalgia we know the symptoms that come with it don't we.
I just wanted to let people know that you are not alone, I'm walking, although very slowing, by your side every step of the way. We will battle this illness together. Sending out gentle hugs 🫂 ❤️
#fibromyalgiawarrior #ChronicPain #ChronicFatigue


Jobs for spoonies

I am struggling finding a career path or just job to get me through life right now. I’m currently employed and in training at this fitness place doing member services but I dont know if its what I want. I’d like to know what other #fibromyalgiawarrior ‘s are doing for work. Thanks!
#FibroFog #Fibromyalgia

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Living with #ChronicIllness

I've been in a pain flare since Thanksgiving, on top of trying to figure out money constantly, still grieving my dad passing, really not at all liking this holiday season, & of course, we're still in a pandemic and our government is not helping us at all...yay. But I'm still here, even if I am losing track of days😂 For more from me follow me here or on Instagram or Facebook or visit the link in my profile #ChronicIllness #ChronicPain #chronicillnesswarrior #spooniewarrior #Spoonie #InvisibleIllness #fibromyalgiawarrior #Fibromyalgia #mecfsawareness #mecfswarrior #MyalgicEncephalomyelitis #fibrowarrior

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It's hard.

I've been getting a hard time lately for not being able to make an income, and it's really wearing on me. Things got worse when my father passed away 2 1/2 months ago- in pretty much every way, but the financial strain seems to be what requires all my attention. Instead of being able to grieve, I have to struggle to keep utilities on. It's never- ending.#ChronicIllness #chronicpainawareness #chronicillnesswarrior #InvisibleIllness #invisibleillnesswarrior #mecfsawareness #Fibromyalgia #fibromyalgiawarrior #MyalgicEncephalomyelitis #spooniewarrior #spoonie

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For Your Door

Figured I'd make this for people to print out for their doors since we have a ton of people talking about being irresponsible and going door-to-door for trick-or-treat. Feel free to cut the logo off the bottom when you print. I made it very small and faint so it wouldn't be hard to remove or cover upon printing if you don't want it to show. I just have it there for digital sharing to make sure people know where it came from. For more, follow me here or on other social media platforms under Written by Dida or visit the link in my profile #ChronicIllness #chronicpainawareness #chronicillnesswarrior #fibromyalgiawarrior #Fibromyalgia #mecfswarrior #spooniewarrior #Spoonie #InvisibleIllness

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Living with #ChronicIllness

I'm all about transparency and being honest about my life because I feel too many people pretend like they have a perfect life and it makes others feel alone in their problems. I posted this one on my other platforms today because I'm feeling all of these right now. I know I just have to get through, but able-bodied people just don't get it. They don't understand that it's nearly impossible to have a savings when you started getting sick at 23. I started working at 15, and worked in my chosen career until about 30, then medical issues stopped me from doing that, and I worked in whatever jobs I could handle until 36. Then my body wouldn't let me anymore. I had 10 surgeries from age 27 to age 35. How was I supposed to save any money? How am I supposed to survive without help? Yet I, and many others are expected to figure this out every day. It gets frustrating, and today is just one of those days. Between the pandemic and my father being in ICU most of the pandemic, then passing last month- my situation just sucks right now, and it's all seen as my own fault by many people. Even though I wasn't the one who exposed my father to Agent Orange over and over and over, resulting in his offspring having medical problems. They still see it as my fault, somehow. Smh and I could explain until I was blue in the face and they'll never get it. In their minds, there is always something I should have done that I didn't. While I was trying to fight my body to stay alive. Yeah. Follow me here or on other social media under Written by Dida or visit the link in my profile for more from me #ChronicPain #fibromyalgiawarrior #Fibromyalgia #fibrowarriors #MyalgicEncephalomyelitis #cfsme #spooniewarrior #Spoonie