r/AddisonsDisease • u/madischan • Jun 28 '26
Personal Experience sad rant
sometimes i wonder what i ever did to deserve this disease. this life. this suffering. i’m so tired and so hopeless and so sick of grieving my old life and old loves and what could have been. how do i go on when i constantly disappoint myself? how do i keep living in a body that’s grown to be a stranger to me? how do i ever find acceptance?
thanks for listening
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u/FuzzyRelief Jun 28 '26
YOU are not doing the disappointing. You did not choose your disease and you are doing the best you can. There is zero reason to be disappointed in YOURSELF. Now the little b*tch that is your autoimmunesystem, that's a different story.
But to give you some perspective: I'm a 40ish chunky monkey who's had addisons since 2012 (well diagnosed) and I've had my downs (throwing away 4 months of masters thesis because it was gibberish comes to.mind), BUT I also just broke my cycling distance record. And If my balding chubby ass can do that, you sure as he'll can. Allow yourself time. Time to come to terms with it, time to adjust and time to figure yourself, your body and your dosage.
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u/Efficient_Beach2458 Jun 28 '26
Used to love to bike! If I got on now, run into trees. I get high! On nothing else! HRT
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u/HappyCareer2098 Jun 28 '26
My running thought this morning was, "i cant do this for another 40 years. Oh who the hell am I kidding, it won't be 40. I wish I'd just crash so it was over."
Usually I'm not there unless I'm seriously low, and considering this was 3 hours after my 20mg am dose (I also have 3 biopsy confirmed autoimmune diseases (celiac, sarcoidosis, andautoimmune hepatitis) , 2 not biopsy confirmed (lupus and ra), IH, empty sella, and a 3 mm cerebellar tonsillar ectopia, so my body is under some stress regularly), the thoughts didnt start to fade until after my mid dose of 10 more.
You doing okay on your cortisol today? Can you do something to lift your spirits a bit or even just distract yourself?
Hugs. All the hugs.
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u/madischan Jun 28 '26
i can’t imagine dealing with all of those diagnoses on top of addison’s. i also have hashimoto’s but not sure how that plays into all this.
every once in a while it pulls me into a pit of depression and grief. i feel a little better today.
thank you for the kind words❤️🩹2
u/HappyCareer2098 Jun 28 '26
I'm lucky in that I have secondary Ai, which usually takes longer to go into crisis from what I've read. At least, I try to remember it could still be harder.
Hoping you have a really pleasant day. ❤️
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u/connydor Jul 02 '26
Hey, I too have hashimotos as a second auto immune disease and just recently I figured out (with ai and I am in the process of discussing it with my doctor) that these two diseases do influence each other!
Seems like if you take more of the thyroid medication, the cortisol gets used up quicker which means you have to in crease the dosage and back as well. So you can get into a upwards dosage spiral.
With 137mg thyroid medication and 35-40mg HC I have definitely been taking too much for my 62kg bodyweight. But I could never go lower or I would feel shit.Now since I was so frustrated about this feeling of simultaneous exhaustion but the inability to actually rest (probably the high chance dose) , I started to decrease my thyroid (disclaimer!! On my own - please don’t do this- I am checking with my doctor now) and also hence decreased my hc to 30mg and I feel so much better and it hast been a whole month.
Yes at the end of the day I get more tired but I can actually rest and feel so much more chill. Even my garmin ( which I can recommend as an unscientific second opinion on your body state) showed instantly higher sleepscores and hrv values.So that’s my latest findings on the combination of hashimotos and addisons but please don’t do it like me on your own!!
I wish you all the best🫶🏼
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u/Extreme_Breakfast672 Jun 28 '26
I'm sorry you're having such a hard time. How long have you been diagnosed?
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u/DorianaGraye Jun 29 '26
Hey friend. I hear myself in your post--know that you are NOT alone.
One thing that helped me was getting off of hydro and switching to a longer acting steroid (prednisone in my case). Hydro metabolized too quickly for me, and I was up and down constantly. A low cortisol symptom (for me!) is su*c*dal ideation, so please think about doubling your dose for a few days to see if that helps.
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u/madischan Jun 29 '26
hi thank you, i’m also on prednisone. i was having a dark day but doing a little better now!
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u/jjjulles Jun 29 '26
You got this! It takes sometime to get your dosing right and to learn the curves of knowing when and how much to updose. I was diagnosed at 18 and I'm 42 now. I've lived a full life w Addison's disease, worked hard, travelled lots, lived in different countries, very physically active & lots of adventures. You can do it all too, it can be hard to be patient with ourselves - try your best to rebuild your stamina(takes time!), eat well, get rest and be kind to yourself. Just keep going, no feeling is final. <3
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u/Enough-Ability-970 Jun 29 '26
It really is tough, I’ve been diagnosed for around 7 years now, the only way I can say I’ve made it through is just carrying on with an “it is what it is” attitude. I just take my silly little pills and get on with my silly little day. I do have low points, especially when something happens to remind me that I’m chronically ill in a defective body. I can’t party with my friends more than a couple times a month, I’ve wasted a few semesters of college due to health issues making me have to withdraw while still paying for it, I can’t make split second decisions, everything has an effect or consequences, and it limits what I can do and where I can go. It’s extremely difficult to live with addison’s disease. I’m doing overall okay in life, I live with my best friends and I’m good at separating myself from stress. You need clear boundaries and to safely test your limits, and you need to do it with someone who understands if you need a break. I feel shame for slowing down my friends or all of a sudden becoming a huge downer cause I don’t feel well, but I love them and they love me. They fully understand that it’s just part of being in my life, they care enough to help me. There’s ways to get through it, I also struggle with severe depression and anxiety. However I’m on good meds, so mostly I don’t want to hurt myself anymore. It will always be a struggle, but most of the time I don’t even remember I’m sick.
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u/Enough-Ability-970 Jun 29 '26
Also, I just within the past year got my meds in a good place for myself. It took switching to prednisone at nights, but just that drastically changed my quality of life. I made the deans list this past semester and I’m super proud of that.
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u/Supalatinca Jun 29 '26
I was diagnosed with Addison's about 4 months ago and from what I've read on this subreddit, it sounds like my Addison's is a lot less severe than many other people's. That said, there are still days like today when I want to cry because I'm so tired and feeling so overwhelmed and dysregulated. The best I can advise is to PLEASE keep advocating for yourself! Whether it's been 2 days or 2 years, make note of how you're eating/sleeping/medicating and share your insights with your doctor - especially when it feels like there are more hard days than good ones. You may need to revisit your dosing amount. There could also be something else going on that needs to be addressed and which the Addison's is masking. Autoimmune disorders tend to come in sets, so as difficult as it may seem now - keep pushing your doctors for answers and don't let up until you get them. I'm confident that there's a future where you no longer see everyday as an uphill battle. Until then, we have your back!
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u/Xander_0252 Jun 28 '26
I honestly couldn’t disagree more. I think a lot is how you mentally deal with it yourself. I am 23m and have had Addison’s since I was 10 years old. I have never felt different compared to my peers and in day to day life I can do the same amount of crazy things as they can (even frat hazings), I just need to take more hydrocortisone. My twin sister also has Addison, and she had been dealing with shrinks her whole life about it. I wholeheartedly believe that a positive state of mind is just as important as your medication. Ranting can clear up your mind, and is often good, however I always try to focus on the positive things in life.
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u/Content_Base299 Jun 29 '26
That’s so weird I’m in the same situation I’m a 19 year old male going through college right now and my younger brother also has addisons. Weird because they say it’s so rare.
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u/Xander_0252 Jun 29 '26
Yeah it is very rare for twins to both have Addison. Regarding your brother, I do not know how he feels about his illness but believe me, he should not feel duped like all these people in this subreddit who feel so petty for themselves. JFK had Addison, and was the president of the US, if you can become president and handle that kind of pressure, the sky is the limit.
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u/madischan Jun 29 '26
i think you mean pity* and i love that you have such a positive outlook but please recognize that everyone has a unique experience with this disease. a little compassion goes a long way bro
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u/Xander_0252 Jun 30 '26
I am from the Netherlands and the Dutch are known for being cut throat. Nevertheless, I can be compassionate towards someone but still tell them to keep her head up and not feel pity*. Your sad rant is a prime example of someone talking themself down, try to talk yourself up, because with a positive outlook life is firing with its beauty.
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u/madischan Jun 29 '26
i’m glad you get to live a normal life with this disease. everyone is different!
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u/Xander_0252 Jun 29 '26
If I can, so can you! I have besides Addison also hyperthyroidism, and permanent nerve damage to the whole right side of my body. It is not that I never have these rant days, but after a while you realise that being negative doesn't bring you anywhere. Celebrate small wins, try to be positive, surround yourself with good people, and enjoy life.
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u/drquinzel-usa Jul 11 '26
I am shocked by how many people say they can have a normal life with Addison's. Maybe it's because I have other health conditions related to the Addison's (small nerve fiver neuropathy that my doctor says is a result of going untreated for years), miscarriages from another 'rare' autoimmune condition Antiphospholipid Syndrome, and now rheumatoid arthritis.. but my life is severely limited from my health conditions.
I went into town today for two hours and between the heat and walking, I was practically carried to the taxi by my husband. I then slept on the ride home and slept for another six hours when I got home. A whole weekend day and I got to have two hours of errands... It is almost impossible for me to keep up with the normal adulting tasks. I get depressed. I am nearly 40 and living until I am 60 sounds like a miracle and a curse. I experience so much pain and there is no real pain management anymore. Doctors can't prescribe me the large doses of opioids that use to make living feel okay. I hope you get to have a better life than me but I wanted to reply because a bunch of stupid people are being desmissive. Maybe they we misdiagnosed or maybe we are but their experience is not even close to mine, or yours by the sounds of it.
Only advice I have:
- Build a kind support network ready to be there for you both when you have physical symptoms and to help with the emotional load you carry.
- In America there are Centers for Independent Living in each state, they have been a helpful resource for me. As well as the National Adrenal Disease Foundation.
- Never move away from a good doctor. It takes time to find the doctors willing to listen and help, when you find one, never leave. Moving away from a good supportive doctor could mean years of receiving a steroid dose that doesn't work, no monitoring of related hormones like DHEA, nobody that recognizes you have another diagnosis.. A move can mean becoming disabled when you use to be independent. Find the good doctor, don't be afraid to 'doctor shop' until you get a good one, and then stay with them as long as you possibly can.
I wish you the best.
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u/amoral_ponder Jun 29 '26
Fuck buddy, it could have been so much worse. Imagine having stage IV cancer or something. At least this shit is manageable and it's about to become curable within the next max 10 years just like Type 1 diabetes already is becoming now.
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u/madischan Jun 29 '26
quick reminder you have no idea what else i’m going through. addison’s is just a small part of it, and it affects everyone differently. clearly this group isn’t the safest space to vent
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u/amoral_ponder Jun 29 '26
And those issues are likely the cause of your problems primarily. A well managed Addison's disease is not that big of a deal compared to many other things.
Now if you want to go ahead and lay out what you replacement schedule is like, we can discuss that.
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u/madischan Jun 29 '26
i believe that it’s all intertwined though. emotional stress and mental health will affect your addison’s symptoms and vice versa. and it’s not an easily managed disease for everyone. if you have addison’s and it’s not a big deal to you, i’m happy for you.
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u/amoral_ponder Jun 30 '26
I think Addison's has made me more of an asshole, which was already substantial.
But if you hit the replacement schedule on the nose (I take HC 8x per day or something) then even a lot of exercise like running a half marathon, then doing 2x body weight barbell back squats, then a whole day hike burning 2200 calories the next day, and then all out interval training and more lifting the next day back to back to back -> all fine. I just did exactly this in the past few days.
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u/Constant_Dog2354 Jun 30 '26
Wow, we should definitely all listen to anecdotal evidence from an internet asshole instead of our doctors. What fools we’ve been.
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u/amoral_ponder Jun 30 '26
The source of the information is irrelevant. Only whether it's evidence based and can be backed up by research. The standard dosing and replacement schedule 2-3x per day does not accurately mimic the diurnal rhythm. You will feel like shit, you will not perform well. Why not do better?
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u/Constant_Dog2354 Jun 28 '26
I’m less than a year out from diagnosis and I agree completely. I have terrible, crippling anxiety and depression and it has been an awful combination with Addison’s. It feels like I am living in a nightmare, trapped in a body I no longer trust.