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464d
Which word best describes how you feel combating a chronic illness?
28
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Acute lethargy
Chronic Restlessness and Agitation
Lethargy
Low Mood
Warfarin
Generalized pain
Acute Anxiety
Memory Loss
Restlessness and Agitation
Disturbance of skin sensation
Chronic Generalized pain
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245d
Acceptance.
0
247d
Tired, burnt out, in pain, wishing there was an unsubscribe button to fibromylagia. I don't remember signing upto this shit and if I did I was intoxicated and coerced. Fed up with the medical system. Sick of having half a chemist in my house. Wishing that I could do things I used to like walking up stairs or go for an hour walk. Fearful of what else this journey has install for me. Sick of waiting in hospitals just to be handed a Tylenol and sent home. Sick of doctors telling me that drinking more water, eating healthier or exercising more will cure me. About ready to rip out my hips as I don't need this much pain.
252d
Frustrated. I have one known autoimmune disorder affecting my esophagus. Rheumatologist believes I have another affecting basically every system in my body but can't pin down a diagnosis. Another doc told me I probably have something that hasn't fully presented itself yet so I'm waiting and getting sicker in the meantime. š¤·āāļø Last time I counted my meds and supplements, I was up to 35. Plus seeing a dozen specialists all the time for a wide variety of symptoms. Managing my health is a full time job in itself. Trying to keep going and not give up.
I also feel so tired and then like I'm lazy for not getting stuff done. But I can't help that I am in pain and unmotivated some days! So then it's frustrating
263d
28 yrs in pain, my strong will and non understanding husband kept me moving. Raised three kids still taking care of our special needs grown daughter. Fostered and adopted two kids now early teens and had to homeschool them. I just feel guilty lying down, stsying in bed. Get mad at myself. It is and has been stupid. Just had both shoulders replaced. I am suffering but evenings now, I am just done.
1
264d
š„
273d
All of the above..? I'm mostly just... tired. Hopeless, i guess? Like, i feel like my world is shattered. I'm just a kid, I want a normal life.
@Junky same
276d
Definitely frustrating but there are times when I feel more optimistic and hopeful than others. Some of my chronic conditions have gotten a bit easier to manage even if they can't completely be cured, I've gotten better at treating my symptoms, which does give me hope for some of my other conditions. But I admit there are some I've been dealing with for so long where it's easy to see a little improvement and then feel like I'm going through another setback... it can be disheartening but all I can do is keep trying my best
Honestly I feel contempt about it. Like it's a mixture between ok and just like I got robbed out of a normal life and a normal family. It's very complex and kind of hard to explain but that's basically how I feel about it.
337d
I refuse to use words like combat! It can be detrimental to emotional/ mental health and does not serve any legit purpose. If the question is how to I feel managing my disabilities, I would say burnt out and frustrated with a bit of sadness.
339d
all of those things, mixed together in different combinations at different times
@hmmmm same
341d
Burnout. Change of meds number 28.
Honestly all of them. It's often overwhelming. I'm grateful for what my body can do but I'm also missing my life before my health plummeted. I'm happy that I have many different treatments available, but I'm frustrated every time they fail. It's feeling everything at once, and then its just numb.
@Aiya_the_ill same
393d
Guilty
@LunaNova same
417d
All of the above. I have a diagnosis amd there is a way to treat the route of my condition but it developed so much that even if i get rid of tue route I'm left with 90% of the problems still. The cfs medical team cant help as Im on too much medicine for anything they say to help. The pain team won't see me as I have fatigue and need to see the fatigue team and even when i say I can't see cfs team they say they cant prescribe me much as I'm on warfarin which fucks with evrything. I can't get disability Benifits as I live with my parents and have a roof over my head and my mum has a good job with good pay and my condition isnt "bad" enough (I can get out of bed when needed, dress myself, make myself simple meals, go to the toilet on my own etc. But I can't get a job or move out.) Gp cant do much more tyan shuffle me arround the nhs system of pain, cfs, and any other team they can fucking think off all while saying "sorry i cant do anything else" and I fucking hate having to go in circles all the time. I'm tired, Angry and numb to it all and I just gotta deal with all the mess
@ClayBrooks pretty much like what it is in Ontario. I couldn't get onto DSO because they only recognize certain types of developmental disabilities even though I have a developmental disability. They don't recognize my disability.
I know itās weird to say I feel optimistic- but getting official diagnosis and confirmation was really what helped me understand myself so much better. It gave me answers and steps I could take to understand myself better ā¤ļø
One word description simply isnāt enough.
@KellyKC felt
442d
A roller coaster of things. One word is too simple for something that is difficult and takes over your life and most of the time your identity.
Trapped is definitely a good one
@Darren felt
443d
Miserable
@chocolatetruffle same
444d
I was born with birth defects and I'm tired. I'm tired of dealing with the constant infections from my mother abusing drugs when she was pregnant with me. I'm tired of taking antibiotics and having my bodies bacteria build resistance against them. I just want to live a life infection free for once!!!
446d
Frustrated
@VenusDeMilo same
Tired? More like EXHAUSTED
@bridgiebee same
At the end of my tether to be honest.
I think it starts of as optimistic then angry then frustrated cus nothings being done then that goes to just tired and numb. I used to see doctors as people who would always try and help you, I've been laughed at I've been told if it was that bad most wud of killed themselves by now. Now if I go with anything e.g atm I have vertigo (so I'm told) but he will say "so ure fibro etc has gone".. no this is on top of it. I dont do into a doctor's appointment with ant kind of hope
447d
All the options except optimistic and neutral
Overwhelmed
275d
@1ofmany same
451d
I mostly feel neutral. It's been like this so long, it has become my normal. It's barely a fight. It's like living in a haunted house but you know every ghost and every creaky floorboard. Sure, some ghosts still like to mess with you but it's like, "not again Barry" rather than horror I wouldn't describe it as a combat, but a slog
2
Invisible. People always tell me I look so healthy and they donāt believe I am sick, or I couldnāt be sick because of my capabilities, but Iām so frustrated and tired of being overlooked. Iām struggling and I want to scream Iām not ok more than anything, I want people to understand, but at the same time I donāt think I could stand pity either
@Starsunmoon same
336d
@Starsunmoon feel this šÆ Thanks for sharingšš»
456d
I do what my doctor says, but I'm willing to try new things and think outside the box, so to speak.
Draining was the top word for me
457d
I was angry for a long, long time. Now I've accepted it and just feel neutral. It is what it is and it's not going to change.
338d
@jam064 same
All of the above and totally broken... š„š¢
@EmzPow same
Hi guys did someone tried chromium picolonate? Tried them once for a month and they worked great to the point my GP asked to stop having the medications i had but after two months my glucose levels went up . Tried them for longer to no avail!!!!
All of the above tbh its really really hard to get any good advice or find people who suffer the same to talk to and try to help each other
@misty8811 felt
459d
I put optimistic but I am a Stoic and likely manic
Frustrated because when you have several chronic conditions a treatment used for one may make the others worse so its a constant pick your battles approach to healthcare
3
@CraftyMama same
461d
I get really frustrated as I can't do the things I used to, I fall easily aswell which don't help, I'm constantly exhausted and trying to keep on top of the house is impossible,
@chesilchick felt
Feeling like there is no way out and I'm trapped
@Bre19 definitely the trapped feeling is what I get, feeling trapped in it all
@Bre19 I feel like this a lot too. I feel trapped by the pain and other horrible symptoms, and it feels terrible
463d
Frustrated, angry, scared and everything inbetween. Itās upended my life. Stopped me from doing what I was planning to do. One year ago my life changed
Alone, so utterly alone
@LynnKenzie same
Honestly I find a kind of hope in my illness. What's tiring is everyone else. But that's not my body's fault. Not my fault. It's trying it's best and where it can't I help it as much as I can. There's a kind of strange beauty to that, you know?
@Starcycle I feel this on a deep level š I agree that you can only do what you can do - itās the weight of every body elseās expectations that can make shit hard.
@Starcycle I needed this reminder. All of us on here are fighting against bodies that are just trying to do their best for us but they canāt. Itās a very hard thing to try and love your body when it causes you so much pain
@Starcycle Not to say I don't get frustrated at all, of course.
I want out of Fresenius and out of dialysis period. I feel like Iām being held hostage medically.
Honestly, it depends on which one it is and why itās flaring so badly. Sometimes Iām just frustrated as heck. Sometimes Iām just exhausted. Sometimes I feel hopeless. Sometimes itās one and changes into another.
@serendi so true
Helpless and Hopeless
@Olivebutter2236 yes
sad and upset. Angry. Lonely. scared. Anxious. Tired. Burnt out. And a little bit of optimism amidst the negative emotions
@kateafranklin felt
Tired definitely could sum it up but it's so much more than that and there's a sad/hopelessness to it. It's hard and I dont really know how else to describe it.
@AnimalBoy felt
I'm frustrated and I'm tired. I do so much to limit my pain and it's time consuming and boring and seems like it doesn't help [until I stop then I realize how much pain it did save me from] a feel trapped in a routine I hate but can't survive without. I'm not free to do or eat what I want and I hate not being able to get help with it. I'm tired of doctors acting like I'm not in enough pain because I'm not curled up in ball bawling or flopping around crying like a toddler. They don't believe I'm up at 6:30 stretching before breakfast walking after each meal and stretching before bed just so I'm not suffering. Eating an Anti inflammation diet that also cover my other health concerns to the point that I now hate food because I'm overweight. They think I just don't do enough, but I'm doing all I can. I need help but I can't convince them I'm even in pain.
5
@LadyBrownharth felt this deeply
@LadyBrownharth I also find it so tiring constantly having how much pain you are in questioned. I have broken bones and had injuries of that level 10 pain, and they are simply nothing compared to the toll of being at a 4/5/6 pain daily and not being seen because itās ānot bad enoughā
@LadyBrownharth And I really make amazingly good tasting and healthy foods that people love... except me because I'm spiteful that it's perfect but doesn't help... that much. Depressing maximus.
Tired and frustrated. There's a reason for my name
4
@IAmTired247 me too
All of the above? š
10
Hopeless.
@tigerbear felt
Alienated It feels like those who see me at my worst run and never look back š„
@AstraDragon same here
@AstraDragon definitely
@AstraDragon yes same
Itās not just tiredā¦. Itās a constant feeling of burnout from trying to act normalā¦.
26
@DitsyDiabetic same
@DitsyDiabetic this pretty much sums me up. I feel like my family are far too pushy with me about doing ānormalā activities. I canāt even get out the house much at the moment because Iām constantly tired and I am honestly working my hardest to be like normal but I seem to be like in this never ending web of issues
@DitsyDiabetic I felt this especially when it comes to having depression and anxiety it's a constant battle
@DitsyDiabetic absolutely, couldn't agree more. Especially the 'invisible' illnesses.
6
ā This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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