r/ChronicIllness

I was diagnosed with fibromyalgia in 2024, however I am 99% sure I have lived with this for a very long time. My new doctor basically dismissed me in April and I’ve just continued to suffer. Well, I have had enough. I can’t function like this.

Some things I say everyday because of how I feel are 1. I feel like ALL the Mac trucks ran me over 2. My body is on fire on the inside.

When i have a flare I guess you’d say, I cannot have anything touching me. I will have a whole break down. My clothes, jewelry, hair has to be up and not touching my skin at all. Nobody can talk to me, I can only explain it as I’m burning. I’m in pain every single day. My head hurts on and off all day every day. I sleep maybe 4 hours a night and can’t nap. It hurts to lay down, but also to sit and especially to stand. When I walk it almost feels like someone is ripping my shoulder blades apart. Numbness in my upper back. Constant debilitating pain on my left and right side, it bounces back and forth. I am hot then 1 second later I’m freezing. I get chills. I’m nauseous 80% of every single day. I have crazy pressure that nothing helps, it just goes and comes as it pleases.

I can’t take this. I can’t function in the world like this. The air hurts my skin most days.

I see my primary tomorrow and something has got to give. This isn’t fair. I don’t know how to function when I feel like I’m dying 24/7 😢

Guidance? Advice? How do I get this doctor to see what is literally in front of her eyes. She has never once went back and even looked at my diagnosis or any of my history. Apparently doctors don’t do that anymore.

I feel like I’m being failed and that shouldn’t even bother me because I should be used to it. But something has got to give.

Okay, I’ll start this off by saying, I do feel justified in being royally pissed off by this but others are telling me I’m being silly so.

My best friend and I see the same doctor. He’s a family nurse practitioner, and he’s kinda new in some capacity? I’m not entirely sure the semantics I just know he has someone overseeing him and that’s why it takes forever to get my labs back.

Anyway, I’ve been suffering with migraines for along time. I, however, wasn’t aware I was suffering with migraines. I rarely got the classic symptoms, like nausea, light sensitivity, etc. I just assumed I had really bad headaches, and just push one. Really that’s just how my family was too, I came into contact with cocaine as an infant so most of the time whatever I was feeling was chalked up to either that or just being a crybaby with my family. (Ironically I have a low pain tolerance to external pain, but my appendix could rupture and I’d be like “oh this is mildly uncomfortable.”)

The reason I figure out migraines was when I went to a sleep study doctor for sleep apnea. I mentioned my headaches could feel like an ice pick being driving into my skull, so I just tell folks I get “Ice pick headaches.” He’s like “Okay so that’s a migraine.” And it was like, a curtain opening up. It made a ton of sense. Shortly after that, I had a hymenectomy surgery, and it was a whirlwind of appointments and I hadn’t been able to chat with my doctor about migraines yet. During the recovery of my hymenectomy, I had a six day straight migraine. I kept in contact with the hospital to ensure I didn’t have to go to the ER and made an appointment with my doctor.

He was gonna give me a migraine pill he took for his own migraines, and I was ecstatic. Until I saw the price at the pharmacy, which was nearly $200 with my insurance. I turned it down, informed my doctor I wasn’t able to afford it and he prescribed a high strength naproxen instead. I struggled with it, but I thought it was the best I could do given my circumstances so I didn’t raise a big stink. Just kept pushing like I always do

Only to find out from my best friend that he prescribed the same medication for her migraines, and he informed her that she could go straight to the manufacturer and get them cheaper. We were at the state fair, and she had to take a pill bc of the lights and was just bragging over how amazing it was and how fast acting and it took so so so much to hold my tongue. When I told her that I didn’t get that information she was like “Oh. Huh that’s weird.” And shrugged it off. My dad told me that I was overreacting and that he was sure my doctor just forgot to tell me during both appointments and that I should just call back and get the prescription reinstated. And maybe I am overreacting? Maybe I just didn’t explain my pain well enough, I don’t know really. I just know it left a seriously bad taste in my mouth.

Just a simple question to keep me busy and to maybe find more foods that I could eat when my stomach is very upset lol.

What's something that you know you can always rely on when it get too much and your body just can't handle anything other than this? :)

Let’s all mourn and yearn together a little. What are some things you don’t do anymore or can’t do one day because of chronic illness that you used to do before it all began or planned to do or in general just would do with your life if you were at least as healthy as the average person?

I’ll go first:

- drive, and enjoy driving
- travel (by highway, by train, by plane, I’d travel far and wide and see the world)
- eat more of the foods I love and enjoy that trigger me
- enjoy alcohol more heftily like I used to
- enjoy cigars still
- use and enjoy weed still
- go to the mall and spend the whole day shopping there (with money I’d actually have cuz I’d actually work)
- going hiking! Spending more time way out in the outdoors for the day
- I guess just going out in general.. to restaurants, to bars, to bookstores, to local farms, to arcades, to parks.. I really miss just driving a half-hour to an hour to go do something with the day in the days before I had to be at least near if not on/in my couch and bed all day
- visiting people and it not being mega awkward and a downer

I’m 33 years old and I live alone in a small town in France. This is actually the first year of my life that I have truly lived alone.

My story is complicated, so I’ll try to summarize it.

For many years, I had to take care of other people and deal with a very difficult family situation. My relationship with my brother has been extremely damaging for about twenty years, and for a long time I was basically forced into living with him. I also lost my mother, and after her death, a lot of family conflicts happened. Eventually, I cut contact with most of my family.

A lot of friendships also disappeared or ended badly. Many people who were around when my mother was alive simply stopped talking to me afterwards.

Today, I have very few people left in my life. There is really only one person I feel I can somewhat rely on. She is a lovely woman I met about three years ago, and she is over 70 years old. She has been incredibly kind to me, but obviously she cannot take care of everything.

Since around 2015, I have basically had to manage most things on my own.

I also have significant health problems.

I have an eye disease that requires heavy medical treatments, but one of my biggest current problems is swallowing.

For several years, I have suffered from severe swallowing difficulties and phagophobia. Eating and drinking do not feel automatic or normal to me anymore. Sometimes even swallowing liquids is difficult, and meals can become extremely stressful and exhausting.

Over time, this problem became much worse.

I became unable to eat normally and could no longer take in enough food. I lost a significant amount of weight, became physically very weak, and eventually had to be hospitalized because my nutritional situation had become too serious.

Because I still cannot eat enough normally, I now have a PICC line and receive nutritional support through it.

So when I came home from hospital, I was not simply “recovering from a hospital stay.” I came home still underweight, exhausted, struggling to eat and drink, and with a PICC line that I have to protect.

And I came home completely alone.

Since then, everyday life has become incredibly difficult.

I don’t have a car. Public transportation exists where I live, but it is limited. I also live upstairs, so even basic things like bringing groceries home, carrying packages, opening doors, going up and down the stairs, dealing with appointments, medications, nurses, medical suppliers and paperwork can become exhausting.

And because of the PICC line, I am supposed to be careful with my arm.

The problem is that I am alone.

There is nobody here to carry things for me or do everyday tasks. Sometimes I have to use the arm more than I should, and my PICC line has already bled several times. It has been checked by medical staff and the dressing has been changed several times, but everyday life still requires me to use that arm.

On top of all of this, my apartment is causing major problems.

It is a very small apartment that I found urgently because I received almost no help finding housing and had to manage everything myself.

My kitchen sink is currently unusable because of plumbing problems, so I cannot properly wash dishes.

My boiler also has problems and has been leaking dirty/grey water, so right now I am basically living with cold water.

My apartment is also very cluttered because I came back from hospital already exhausted, physically weak and unable to manage everything at once.

I have tried to get home help, but even getting someone to come and help clean can take weeks just to receive a quote and organize everything.

I have contacted associations, social services and other organizations. I have written letters. I am also trying to find another apartment because I honestly don’t think I can continue living like this.

But finding decent housing in France right now is extremely difficult, especially with a low income.

I am currently not working and I live on a disability allowance, so my financial situation is limited too.

I think what shocked me the most was how hard life became after leaving the hospital.

In the hospital, people are around you.

Then you go home, and suddenly you have to manage everything again.

Groceries. Laundry. Food. Cleaning. Medication. Medical equipment. Phone calls. Appointments. Paperwork. Deliveries. Opening doors.Carrying things. Going up stairs.

And in my case, even eating and drinking are already difficult before I start dealing with everything else.

You are supposed to recover, but at the same time you are doing the work of several people just to keep your life functioning.

I’m writing here because I desperately need to hear from people who have experienced something similar.

Have any of you ever come home from hospital completely alone, with no family or close friends nearby?

Have you ever had to manage daily life alone while physically weak, unable to eat normally, or with one arm injured, immobilized, or difficult to use?

How did you manage food, cleaning, shopping, laundry and all the little things that normally require two hands?

Did you also feel completely overwhelmed after coming home?

I’m not necessarily looking for perfect solutions. Sometimes I just need to know that other people have survived periods like this.

I’m posting on an international forum because I haven’t really found the kind of support I need in French spaces, and right now I just need to talk to people who understand what living truly alone can mean when your health suddenly collapses.

Thank you for reading.

I am considering direct care or concierge medicine programs. I am sick of my PCP spending 10 minutes with me saying I have anxiety and only ever ordering metabolic panels because I'm overweight. if she really cared about my anxiety, she'd order tests that actually would figure out what's going on. I've been dealing with HSD, MCAS and dysautonamia symptoms since I can remember.

do direct care providers or concierge's medicine programs actually spend more time with you? Do they actually assess pain? Do they just make referrals without doing anything? How does testing work? etc

I'm curious about it all.

I have insurance through work and definitely plan on keeping that. Cost is a factor. I found a program in my area that's 100 bucks a month as a base fee which is worth it for me if I actually get proper care.

I am having a bad time. I am 25 years old with fibro autism and cptsd, I am too disabled to work and I live on universal credit and PIP alone. It is Fine, not enough for me to easily save up, but enough that I have what I need each month. My pip is under review. If I lose it I will fall into poverty. I will not be able to afford my therapy or private meds and I will struggle greatly with my bills. I live in a tiny shoebox of a flat, I don't have a bathtub or a garden, there is no room for a dining table, the kitchen is difficult to work in because it's so cramped. It's just tiny. My best friend is buying a house soon, because she has a middle class family and thousands of pounds ready to drop. They have a family business. I don't have any parents. My mother is estranged and my dad is dead. So I have no family to financially rely on. I will never be able to buy a house. I will never be a homeowner and I will be lucky if I ever get to take a bath again. I will never get to have a nice dinner party with my friends, I will never get to sit out in my own garden, I will never have the space to do what I want. Because I will never be well enough to work. It hurts knowing that I am condemned to this. I have no control over it. It would be selfish of me to try and raise funds for a home without working. But I'm terrified of living in this tiny flat forever. I'm too poor to go on holiday. My carers talk to me about these amazing holidays they get to go on and I don't get to do any of that. It hurts so much. Everyone is living their lives without me. I don't feel like a person. I went out today with my friend and she was talking about her new house and I wanted to be happy for her but it just hurts so much knowing I will never have what she has. It feels like everyone else gets to have special privileges that I am barred from because of my disability.

so I've been crying all day because I'm confused and don't see a way out anymore. I'm basically fully dependent on my family for everything, all I'm able to do is do short walks and do stuff around the house, sometimes. I have chronic pelvic pain that, despite my diagnoses, like hypothyroidism and endometriosis, doctors can't find a reason for. I've been doing several investigations, so i decided that, in the meantime, i should see a therapist so at least my mind can be in a decent state. all i hear is that i do this to myself, everything is emotionally related, and if i don't begin doing stuff it'll never end, and that I'll probably never find a physical reason either. my question is: how did me, myself and i put a physical illness in my body, that shows physical signs and how am i supposed to begin doing stuff, if when i open my eyes I'm stiff and in crucial pain, let alone when i start moving. I've always been an active, free and stubborn person, the pain is what destroyed me, not the other way around. my blood tests are looking worse and worse, is it all my fault? are all the people that have been depressed for a long time in physical pain that doesn't let them move? like, okay, i would've been fine with this take if my only issue was a tummy ache, but this is so much more. it shows in tests, mri's and ultrasounds, it's constant. I'm utterly perplexed.

Got my blood results back today, and they're all normal. GP receptionist very happily said: "Normal is good!", while clearly not realising I'm on day 12 of a fever with a crackly chest. I have a terrible immune system. The fact my CRP or white cell count isn't even the teeniest bit raised above normal levels is not "good" for me, while I'm rocking a 38 degree fever. It was such a harmless comment that she's probably made to hundreds of other people, but to me it was a slap in the face. Because it's not "normal", it's just another way my body is letting my down. She probably thought I was the weirdest patient in the world when I started crying. I don't get why people feel the need to comment. I wish they didn't.

For months my sleep has been wrecked by shallow breathing, and the chronic sleep deprivation is wearing me down.

I've lost my drive to live and to do anything at all. I feel like I'm running out of options.

I've tried therapy, medication, and asthma meds, and nothing has really helped.

My last real shot at getting answers is a hospital stay in 12 days, where they'll do a bronchoscopy and a repeated CT scan.

How do I get through until then?

How do you accept being in this state of existing but not living - without sliding into despair?

July: MRI performed; damage from what would later be identified as a heart attack called 'normal variation' and dismissed. No further medical investigation.

September: independent review identifies prior heart attack and significantly reduced septal MAPSE.

September: I send the specialist report directly to my current cardiologist and request that it be incorporated into my NHS records and discussed for management.

Response: no substantive clinical response; only a thumbs-up emoji from his secretary, no appointment booked or even acknowledgement of the findings.

GP records that she cannot determine whether I need cardiac medication and will not code the diagnoses because there are “2 conflicting reports” and specialist input is required.

Current administrative position: The GP then sends two identical requests for advice on medication to both hospitals two weeks after she said she'd do it. Am I on planet Earth? Anyone have any similar experiences?

I've been going to the doctor for the first time since I was 9, I went for general checkups since I never had those, got a LOT of bloodwork done, and everything points to the fact that my body is one-hundred percent healthy. No vitamin deficencies, my cholesterol is perfect, my RBC is perfect, my iron is perfect, I never have any weird blood pressure readings aside from it being slightly elevated on stressful days. The only thing that's come back weird is my autoimmune IFA bloodwork. (The entire list is as follows: ANA screen, ifa, positive, anti-nuclear Ab Titer (both regular and 2) 1:160 ANA pattern speckled, 2 is homogeneous, Sm/RNP Antibodies Negative, Sm-RNP Abs Indec <.2 AI, Ribosomal P Protein Antibody Negative, Ribosomal P Ab Index <.2 AI, SS-A index <.2, Anti-SS-B Antibody Negative, Chromatin Antibody Negative, Chromatin Ab Index <.2, Jo-1 Antibody Negative, Jo-1 Ab Index <.2, dsDNA Antibody Index 1.o IU/mL, dsDNA Antibody Result is negative.)

I am so fucking confused on what else there is to do because I have had to put my life on hold, recently decided to drop out of college because my brainfog is too bad to remember anything and having to physically move (including typing this) is painful.

My symptoms are as follows, brainfog, REALLY bad joint pain when moving them, certain joints hurt only if I move them certain ways, like my ankles and calves hurt differently, cognitive decline, I don't really know how else to describe my brain anymore because of how bad my memory has gotten, I forget to do more and more things and even setting reminders doesn't help, my entire body feels like it's constantly bruised, NOT an ache, like, everytime I sleep and wake up it feels like someone was beating me up the entire time, I am always tired no matter how much I sleep, before all of these symptoms showed up like two-ish months ago(?? I never kept track because I kept waiting for it to go away, I assume this started in August) I used to have insomnia and literally couldn't sleep, now I sleep for extremely long hours and still need to sleep in the middle of the day because of how tired I am. I also have been having throat pain, not inside but the outside of what I think is my wind pipe? It feels, again, bruised, which also makes it hurt to swallow, also recently I developed headaches and lightheadedness?? This started happening randomly yesterday after I went to see the doctors. And swelling, as in random parts of my body will start getting red and puffy, and if I press down it feels like my tissue is just...bigger, which goes away at random and doesn't seem to be linked to eating or stress.

I don't even know why any of this is happening. Like I said, about two months ago my joints started hurting really severely for no reason, I just pushed past it because before this I used to get occasional joint pain from exercising a little too hard, but after that day it never stopped. At first it was like, I think my calves, and arms that hurt and they switched sides every couple of days (so my left arm and right leg, then vice versa) but as time progressed it kept getting worse, more and more joints started to hurt, at a point it got so bad I kept limping and could barely walk, I started taking 400 mg of ibuprofen which helped it a little, and have since stopped because the ibuprofen makes me feel weird (gotta experiment to make sure I'm right.) And more and more joints started hurting. Every joint that hurts is both my shoulders, my left is the worst right now, my upper arms, my elbows, my wrists, specifically my knuckles in both hands but none of my fingers have the same level of pain, both thumbs hurt really bad though, my neck is both painful and stiff (the stiffness is new) my hips hurt but internally, NEVER external, if that makes sense, my thighs really hurt which makes sitting and standing a bitch, my knees REALLY hurt, so bad that I have to use my arms to move them sometimes, my calves hurt, and my ankles, and the soles of my feet fell bruised, and itchy, and finally random toes hurt.

I feel like I'm losing my humanity or something because I can't do what I used to do, I miss going on walks, I miss running, I miss being able to do chores without it taking forever, I miss being able to type for long hours without my hands hurting, I miss what I used to be two months ago. I want my fucking life back.

I am 40 years old, but recently I feel like I woke up in the body of an 80-year-old. I just need to put this out into the universe because the people around me keep telling me 'you'll get used to it' or 'it’s not that bad.' It feels incredibly dismissive and it makes me feel so isolated.

My quality of life has completely plummeted.

A bit of background. I have been dealing with severe mental health struggles for years, including Major Depressive Disorder, dysthymia, severe ADHD, and social anxiety. Because of this, I haven't been able to work for several years. I live alone, and my home and my hobbies were my only survival mechanisms. Coding, gaming, working on my oil paintings, and painting miniatures were the only places where I could quiet my ADHD brain and escape. They were my lifeline.

The nightmare started when my vision blurred slightly. An eye doctor told me I had early-stage cataracts. Around the same time, my feet began burning and tingling at night, I was constantly exhausted, and my teeth suddenly started deteriorating rapidly. Because of a severe needle phobia, I hadn’t done blood work in years. That was a mistake I am now paying for heavily. Every single one of these symptoms began worsening at an alarming rate.

It turned out to be diabetes. I fought back hard and managed to drop my A1C from a dangerous 10.93 down to 6.6. But even with that win, the physical toll has been brutal. I now suffer from neuropathy and chronic leg ulcers that make it hard to move around, meaning endless doctor appointments that trigger my social anxiety to the max. My skin has also given up. Every tiny nick on my legs turns into a permanent scar that never fades.

The breaking point happened recently with cataract surgery in both eyes. I am now trapped in a living hell of trying to adjust to losing my natural dynamic focus. The surgeon completely downplayed it, casually mentioning I 'might need reading glasses.' He failed to warn me that this surgery physically strips away your eyes' ability to focus on anything up close without artificial help. Because my hobbies require precision at multiple close distances and a full field of vision, multifocal glasses are useless to me. Right now, I am stuck using temporary plastic glasses. Whenever I am awake, I try to force myself to do basic things around the house like cooking or attempting my hobbies. But after just a few minutes, the glasses trigger a pounding headache and I am forced to stop.

Living alone, I feel my communication channels with the outside world shrinking to nothing. In recent months, my mobility was already ruined by my legs and the cataracts. Now, post-surgery, I am completely buried inside my house. Even my final source of comfort, just looking down at my cats when they sit on my lap, is gone. They just turn into a blurry smudge.

I’m not looking for toxic positivity or quick fixes. I just want someone to look at this whole picture and acknowledge how brutally hard this is. I am not giving up, but the exhaustion of losing my safe spaces is just overwhelming right now, and I really needed to feel heard.

I tried everything, I tried:

Prescription cough medicine

Two different nasal sprays

Rinsing out my nose

Turning on air purifier

Taking asthma steroids

Using a steroid inhaler

I got my severe sinus infection treated with antibiotics

Taking allergy medicine

Staying away from cigarette and vape smoke

The cough follows me no matter where I go

I drink lots of water

I take cough drops

I don't have acid reflux

I drink tea

I limit exposure to chemical smells

I got rid of mold in my home

I take my inhaler as needed

--

I'm miserable. The cough follows me wherever I go. I'm suffering. The itchy throat and gagging make me wanna die. I'm the only one at my work place who is still suffering from the sickness everyone got 6 months ago. I developed bronchitis as a result then got a sinus infection later. Its embarassing to cough because people will assume I'm sick. I also keep my distance from people. I bet its the mice we have in our home for months making it worse. My mom refuses to get an exterminator. My mom says its the messiness in my room which is bull bc I slept in the living room for weeks and I still suffer.

Hello,
I work for a healthcare company in the UK. I am currently being investigated for hEDS, POTS, endocrine issues and PMOS. I have scored 7 on the Beighton scale and have had MRI’s, just waiting for reports and referrals. I also have significant MH issues including ADHD and bipolar and am diagnosed with inappropriate sinus tachycardia. I am looking for advice as I have a stage 4 sickness review. This is basically HR deciding if I’m fit for my role and if they will continue to employ me as I have had too many sickness absences. Has anyone else been through something similar?
I can’t afford to loose my job.
If you’ve been through something similar what advice do you have?
I have been to occupational health and they have deemed me fit for work but the queried diagnosis’ are new.
Thank you!

For context, I’ve been disabled by a combination of conditions for over a decade and a half so to complications of suspected connective tissue disorder.

During this entire time, I have NEVER received disability/ any compensation and have paid out of pocket for many of my medical expenses and have also paid allot to travel out of state multiple times for surgeries and diagnostics.

The algorithm send me an advertisement for something called “Atticus” yesterday, which left me wondering if are services out there that I may not be aware of. Also kind-of curious if anyone here recommends Atticus or a similar service.

I’m still severely disabled but working on getting better( now that I have more actionable diagnosis confirmed!). Currently have two out of state surgeries on the horizon as well.

Thanks in advance if anyone has any recommendations!

I'm so tired and I feel so done-for. I dont even know what to do with my life and I'm 25. I've been in community college 5 yrs, can only take 2 classes at a time bc of my disability (ADHD, regular fatigue of unknown origin, and chronic wrist pain of unknown origin, investigating currently)

I'm so stumped. My college's disability services only help with in-class issues & accommodations, the career center doesnt know what to do with me and just refers me to O*NET or any generic career-finding website, but none of it considers that I'm physically disabled.

I genuinely love doing physical work with my hands; I'd honestly be some kind of construction worker if I could physically handle it (but my wrist + lifting heavy makes me so tired that I suddenly "feel like I need to fall asleep/lay down"). I considered welding, dental assisting, even interior designing, but the hand-work needed for all of that is too much and it's driving me nuts.

Every single thing I consider is genuinely impossible for me. I want to be a comic illustrator (my life's passion project). It's gonna be super hard and take me a super long time. But if I'm already hurting myself chronically at work, I am never ever going to be able to do that.

Anyway, sorry for rambling/venting, I'm just really stumped.

How did you find a career as someone whose disabled?

Are there any career-finding websites that consider the nuance of disability in the search criterion?

All of these darn quizzes give me things that I am physically incapable of but would genuinely love, otherwise.

Thanks for your time.

I’ve had a day mentally and my wonderful brother told us he became a firefighter and I’m so happy and proud of him. I think it’s a perfect job for him and out of all my siblings he’s def the one to run into a burning building 🤣

But heck if it doesn’t feel like the universe is really shoving down my throat how little I really do and am able to do. I pretty much go to work 3 days a week, clean the house and then I spend the rest of my time in bed. Maybe the couch on a good day- my desk if I’m feeling extra good. But I’m always exhausted or in pain or just generally cannot get comfortable. Ever since I hit autistic burnout and covid wrecked my ass 3 years ago, I struggle to manage everything. I used to want kids but now I can’t imagine managing that. I can’t fathom going back to school because burnout fried my brain, I can’t handle much more responsibility or stress. I don’t have much of a social life because if I take care of the house and shower and go out with friends, I probably won’t be able to work Tuesday and I need the money. It’s just so frustrating seeing other people do things they’re passionate about and I can’t do what I’m passionate about right now because that’s what burned me out in the first place.

I just feel stagnant. I want to have an actual social life, I want to work a normal stable consistent job in the field I actually am passionate about. I want to have the energy to do stuff with my family and go to gatherings and stuff. I wish I could do all those things and keep up with the house and be able to work. But I can’t and it’s really fucking stupid !!

Hello,

My wife has had minor to moderate health problems in different levels of severity since I've known her. Flares happen now and again and can change our plans. It happens. I went into this with both eyes open and ready to support her when she needed me.

But the last couple of years she was dealing with something entirely different. She was dealing with a new set of symptoms, that became more and more debilitating. The past few months have been just helping her to get from her desk, to the couch, to the bathroom. Cooking her meals, tallying her calories, talking with her doctors. Watching her lose weight, watching her world get smaller. If you flashed back a month ago, it was all I could do not to think about where this train was heading.

Then, we finally had a break. An MRI caught something, and they recommended she go in for emergency surgery. Thank god, the new symptoms improved almost immediately. She was out of the woods, and feeling better than she had in a long time. I cried for days, because I didn't realize until the pressure was off that I was trying not to think about how this condition might take my wife from me.

She's become much more energetic, and after having her world so closed off all she wants to do is go out, be social, and expand her horizons. Which is great. She still has chronic fatigue and with her weight and muscle loss I have to keep reminding her that we have to take it slow. It's the last thing she wants to do, but here we are.

However, there's been a cost to me too. I'm so mentally, emotionally and physically spent I can barely keep up with her. I'm at the point where my own health has suffered trying to keep all the plates spinning during the last two years, and I've fallen behind on almost everything. I need rest so badly that every time she talks about going out and doing something I tear up a little because I just don't have it in me right now. I wish I could crawl into a cave and hibernate the winter away. I wish I could put my body back in the box it came in and file it away for a month. I've been running on vapors for so long, and I'm so releived she's OK that it feels like I'm going to break down at any moment.

But it's gone beyond this too. Being this level of a caregiver has changed how I see her in ways that are hard to define. I feel like she's so delicate, I can't even conceive of physical intimacy. I love my wife, and I don't regret pouring my heart and soul into her care. However I can't shake the feeling that being this level of caregiver has changed something. At present, I feel like I need time away from her. I'm not trying to run, does it make me a horrible person to feel like I need a break from worrying about her? I feel guilty for feeling like I need time away.