#i just can't do it anymore. it makes my fibromyalgia flare up

[watermelinoe]

i think circadian rhythm disorders should count as a disability

[newhologram]

Today is fibromyalgia and myalgic encephalomyelitis awareness day. I was diagnosed with both 10 years ago. They're just two of my many comorbid conditions that take constant research, $$$, and resilience to endure, manage, and recover from. They call these illnesses "invisible", but if you pay attention, you'll see them. You'll see how many bags of symptom management I have to pack for an easy 8 hour day at work or to a hang out with friends. How I can't sit up for long, how I always have a heating pad on, how I rest on the floor every chance I get. How I get nauseous and shaky, how I struggle with each weather change, with overstimulation, how my brain fog makes me forgetful and spacey. How the constant pain wears me down and makes me lose hope. How the grief of what I've lost drowns me, how the medical trauma makes me cancel appointments because I just can't do it anymore. How I've tried my best to make the most of life anyway, to find new dreams to cling to, no matter how mundane or small. Because it's all I have. If you know someone with FMS/ME, it's impossible to understand what it's like to live this way. But rather than being dismissive because disability makes you uncomfortable, tap into your empathy. Research your loved one's condition. Help them get groceries or clean up around the house when they're flaring. Little things that might be easy for you can be near impossible for spoonies who often have to choose between eating and bathing. Just being there, really being there, can possibly save them.

[thedisablednaturalist]

Office disability culture is so fucked in environmental science and fieldwork. Like the mindset that to do the job you have to be in perfect physical health or you should just quit. Like I'm not talking about something that is 100% physical labor here, everything is mostly achievable with aids and you don't need to be able to do every single thing. But there's this weird like..pride..that my older coworkers have. They work out in the gym and brag about how many reps they did. They tease each other for having medical issues. They don't ask for accommodations because they fear that their legitimacy will be hurt. That it means that they can't do their job anymore. That they won't be TRUSTED to do their jobs anymore. That it will get taken away.

So they FURTHER hurt their bodies by not resting, not taking breaks, not using ergonomic equipment, not using safety equipment. Not drinking enough water. Not using mobility aids when they are so old that it's supposed to be acceptable. They don't use the scooters at the grocery store, they don't use their handicapped placard, they don't use knee pads or compression gloves.

And here I come in, 24 years old, looking perfectly healthy. And I use walking sticks, I sit down a lot, I have my care bag, I have a ton of gadgets for making fieldwork more comfortable, I have boundaries and limits, I wear braces and knee pads and compression gloves. I use my handicapped placard.

They react in one of two ways:

1. How DARE I. I'm so lucky to be young and no one sees THEM having to do all those things (literally nothing is stopping them but pride). Like old man if you need a break take a fucking break. I'm not going to hurt my health to make you feel better about hurting yours. I'm not risking a flare up to spare the 65 year olds feelings. Im gonna take my break and use my equipment cause my boss doesn't care as long as the work gets done. I'm tired of glares from 100 year olds making themselves struggle across the parking lot when they could also be using the fucking scooter. (I never take the last scooter, there's always another available. Also it's not my fault if walmart only provides 2 scooters for the whole store).

2. It shows them its okay. Its okay to need aids. When I first showed up at my job it was very...macho..everyone was afraid of seeming old (theres probably only 3 of us under 30 in the whole department, most people are at least 50, mainly 65 year olds). Then they saw me using my walking sticks, taking my medicine openly, bringing a chair with me when working away from my desk, using my TENS unit. I overheard one lady ask her granddaughter what fibromyalgia was (apparently she had spotted my pain tracking journal).

My older coworker with a bad knee got a walking stick like mine and beamed when she showed me. The grandmother uses a cane and a walker interchangeably and more often. I get asked where I get my little portable fan and pocket heaters and special clothing. Even abled coworkers are doing it. My coworker who's younger than me sets alarms to take breaks now just like I do. People seem more comfortable using things that help them now.

My boss has really struggled. He has a lot of internalized ableism and hates thinking of himself as crippled. He spent his whole life physically active and strong and all these health issues and overexertion are catching up with him. Like he did environmental testing in areas with fucking radon. He did work where they threw asbestos around like snow for fun. He's done a ton of really hard physical work. He grew up with the mentality that pain was just something everyone has to push through. But I think seeing a young person make the choice not to push through is helping him a bit. He wants to make his own walking stick, he goes to the doctor more. We bond over having constant medical issues and I even gave him the name of my surgeon. Yea he still says stuff like "shoot me if I have to use a wheelchair" (not as much anymore since he now knows I use one) but he's getting there.

Yeah so I've had this in my drafts for a bit and I wanted to update that my boss has been walking around with a fucking broken ankle for the past couple of weeks. He thought it was just arthritis pain and eventually couldn't take it anymore and went to the foot doctor. The doctor has no clue how the fuck he's been walking on it. Now he has to wear the boot and he's banned from fieldwork while he heals.

Older people and the elderly need to learn that it's okay to not push through the pain and ask for help. Everyone needs to learn this, and not be like my fucking boss. Go to the doctor, get that sore joint checked out. Get those tests done. Use that aid. Stop walking on a broken ankle just because you can.

[annunnaki7]

ARE DISSABLED PEOPLE LAZY? COULD REALLY DO BETTER IF THEY TRIED HARDER? This is an example of an average bad week, like 6/10 bad on mental health and 5/10 on the physical level. Oh yea it gets so much worst! Read this and tell me how I could have improved.  

MAY 2023 

Sat 29.04.23 

-Asthma bad all night. I coughed myself awake so often I didn't get any deep sleep. 

-Fibromyalgia not happy about this, and is flaring up on its way to STOPPING FLARING up instead! 🤬 Joy! So now going to pee has extra general pain added to it. 

- Allergies & Sinus bad. My nose runs non stop. Used 1/2 roll of toilet paper blowing my nose just today. And no, I don't like waisting things. Throwing meds at it. 

-Managed to work with my carer, sorting paperwork. I can't help with much else anymore. I don't have the hand strength to cut a carrot. That's annoying as taking away from my autonomy. 

Sun 30.04.23

- Allergies & Sinus still bad with non stop daily headaches, with migraine sometimes.

-Fibromyralgia flare. Pain feels like I feel down badement cement stairs or  when I had major surgery on day 3 with 5 days hospital stay. I'm in too much pain to eat. Exhaustion worst than Covid & Pneumonia! 

-Asthma bad. I have to rest for 1 minute every 10-15 meters I walk. Going to the loo takes 5 breaks.

- Urinary incontinence dissability related not happy about so many breaks to get TO the loo. I need buy more trousers! (I used 3 in one day twice this week)

- I'm in so much exhaustion & pain I can't even face watching TV. Strong painkillers increased. I'm not happy. I was hoping to decrease them this week! 

Mon 01.05.23 

-Migraine. 

-Sinus inflamed for past 4 weeks. Related to but not only cause of migraine. I'm a migraine sufferer.

-Fibromyalgia medium flare. Hands hurt as well as eveywere else. A plate is heavy to lift. I can't stab potatoes to zap them in microwave by myself. 

-Hayfever slightly improving.

-If I didn't have a carer coming to help me with a wash, I don't know how I would cope.She helped more today. She's so nice. People don't appreciate them enough.

-Concerned how I'll make hospital appointment of Thursday. And got builders in tomorrow. 

Tuesday 02.05.23

-Migraine at night. 

-All body pain bad. Been worst before though. 

-Builders poped in to say they'll be back tomorrow. And no neither owner nor estate agents told them about all the work needing doing. 

- This is in fact my comparativly, the "best day" to date. I can't sit in a chair re pain. And I have a high pain threshold. Had major surgery and got up by myself the next day when everyone else did on the 3rd day with help. Nurses said it was shocking to see me trot - carefully -  about.

- Hospital appointment of tomorrow changed for latter on. It's not a vital one. 

-District Nurse popped in to assess if I need to worry re swealing in legs. I'll have to go to the specialist clinic after all. 

-Blood Pressure still high & Pulse going nuts. Say hi to all types of allergies as a possible cause! I take the strongest anti histamin, plus 6 over the counter allergy tablets daily. Yep, the specialist doctors advised that. It stop skin for literally falling off and other horror stories! 

Wed 03.05.23 

-Vomited blood all night (5hrs of hurling on off) from ulcer, blood clots included! Yuck! 3rd time in 1 month.

-Day Migraine following as haven't been able to drink much 

-Im past normal exhausted as part of Fibromyalgia. It feels like I did a 14hr shift and haven't slep the next 2 nights. (Yes, I've done that in the past. Joy of nursing & midwifery whilst having dissabilities)

- Spoke to GP, meds increased. I don't want another endoscopy. Don't see what else it will tell us. It's costly to the NHS, I'm going to be in so much pain for at least 2 weeks after due to dissability, not the test. Urinary incontinence will be a pain. I'm not even for resuscitation (DNR) anyways. 

-Not hungry. Disordered eating means it will kick in if I can't eat at all today. Gods even cake don't sound appealing!

- Builders back. Same thing, back tomorrow instead. But now they got the list of job. 

-District Nurse decided I need compression stockings! My severe eczema might not like the extra heat in summer! & Scratchy material.

-Migraine afternoon - nightime.

-Did eat eventually. Yea me! 

Thursday 04.05.23

-Food helped with migraine & dissorted eating. 

- Pain and extreme exhaustion same. I can't hold a plate of food.

- Severe anxiety started in afternoon after flat owner demanding I get the garden clean that night. Message was passed to me by builder at around 4.40pm. to be done by tomorrow morning. Oh yea, I'm dissabled with poor balance, walks some 15-20 meter with 2 stick, uses wheelchair otherwise. And it would get dark even if I miraculously find someone for, ... work that's not urgent! And oh yes, there's no place to eat at the kitchen table due to building work. Like that's not a priority after builders leave rather than garden. Also. Thunder and rain so bad, I though thunder had struck nearby. 

-Complex Post Traumatic Stress Disorder (C-PTSD) few times last night (originates from past child abuse) but attacks due to the way the flat owner and estates agent treats me.

Friday 05.05.23

-Irritable Bowel Syndrome (IBS) exacerbated since around 2am started with the stress.

- Headaches back

- Severe anxiety rising progressively

- C-PTSD flash back early morning. Good thing I know how to manage it.

- I ate with carer, yea! Well she made me eat. 

Saturday 06.05.23

-Anxiety still high

-C-PTSD same high during day, not typical of abuse. Definitely flat owner & Estates Agent related.

Sunday 07.05.23

- Actively managing the mental health side of things. 

- Bad Heaches day time 

- Friend brought me yummy KFC. Could only eat a tiny bit. Oh great, that's Dissordered Eating not happy with all the stress!

- Migrainy headach lasted 2-3 hrs. Resolved with management.

-Asthma attack in evening for over 2hrs. Was so rough couldn't do lung capacity measurement until finally calmed down. 

- I won't be able to finish my KFC now. I'm pissed off. I'm so tired of juggling several deseases. It wouldn't be so bad of people acted like human being. 

So. Do you still think I'm leisurely lying around having a relaxing time as a dissabled person?

Did you realise that it takes managing one thing after another everyday? 

So everyone can do better of they "really wanted"? I really wanted to not loose my mortgage and dog. It's my dog I missed the most, not even one of my things. From a Midwife I became homeless. From working 16hrs or work followed by Union Rep work (IE talking to staff, not official meetings before you quote the law) I'm now not able to eat independently at times, or wash alone now. I'm still acting?  Have a good, lazy life? You want to swap? 

[butterfly-casket]

Lowkey can't believe I forgot to make this post but at the beginning of this week I walked out of my appointment 5 mins into speaking to my primary. (I had a pulse of 81 and BP of 112/70 going into it.) I left, immediately requested my entire medical history, canceled my insurance (specific to the hospital/clinic I went to), canceled my appointments and sent a message to my physical therapist that I appreciate her but will not be putting my health in the hands of *place* ever again. Then they asked me to fill out a short survey and I went OFF about the bs they've put me through for the past 3 years.

Under the cut is a description of my medical history from the past 3 years because I'm just trying to make some fucking sense of it all and how they still think fibromyalgia fits. I think they fucked up SO BAD for so long that they had no choice but to double down.

> At beginning of 2021, I get shooting pain down my leg & my hip keeps trying to give out

> gets so bad I go to the ER

> gets laughed out of the ER because I briefly mention that I've experienced chronic joint pain since age 10 (to give them the perspective that my pain scale is off)

> goes back to my pediatrician (I'm 18 at the time, haven't found a new primary)

> gets referral to rheumatology and bone & joint

> rheumatologist diagnosis me with joint hypermobility, says he can't do anything about it.

> meanwhile, my nerve pain is getting worse and worse.

> bone & joint doctor, I see him twice, repeatedly assures me that sometimes "people just have pain for no reason"

> pain gets so bad that the only thing I can do is sleep, being practically comatose, and only eating sandwich ingredients and dry cereal out of the box for 3 weeks.

> schedule an appointment with the first doctor I can see. My mom drives me, helps me shuffle into the clinic, and cries with me when the doctor walks in & asks what's wrong. We both become sobbing messes on accident bc I'm in so much pain.

> he tells me the only thing he thinks it can be is fibromyalgia. Prescribes me an antidepressant. The NEXT DAY. My pain is GONE seemingly out of nowhere

> I am unable to take the antidepressant consistently due to lack of primary doctor, doesn't seem to make a difference so I stop.

> 6 months later I am struggling to pee, 3 months after that I get my first uti and it was very bad (blood in my urine). I go to the ER but they quickly prove to be recurrent. I am treated by minute clinics around where I moved to.

> 8 months after the initial flare up, I start having mini flare ups while working an INCREDIBLY labor intensive job with long hours. I had already been working there for 3 months without issues

> have to back my car out of parking spaces VERY slowly because any time I turn my neck back that far to look, I start to black out and become unable to form thoughts. I was taught to neglect myself growing up, so I just thought it wasn't a big deal & that it would go away.

> 3 months after my mini flares up happened, I start to have a month long flare up that gets progressively worse before just disappearing one day.

> I think I'm better, get a new job, immediately have to take a month off of work due to extreme joint pain, muscle pain, and constant uti symptoms. (12 months later we find out I was suffering from thyroiditis.) Try to fix my sleep schedule, diet, exercise habits, and finally start to feel a little better. Go back to work but it's part-time.

> work there for 4 months in extreme pain every day, eventually have to leave because I can't take it anymore.

> apply for disability, get new insurance, & get taken care of by my partner. Also move in w roommates who I didn't realize were incredibly unsanitary. I try my best to clean up after them for 5 months before ultimately I give myself a stress fracture on both my L5 pars and send my body into yet another full body flare up that sends me to the ER. Am still experiencing hyperthyroidism without knowing it.

> ER prescribes me gabapentin and send me back to rheumatology.

> finally get a new primary who seems to really care.

> Rheumatology gives me a 9 beighton score & sends me to physical therapy which helps my joint pain a ton until I have another extreme nerve flare up 3 months later while doing my PT. Literally the worst pain I had ever experienced, could barely move. Primary ups my dose 6x and it helps at the very first but ultimately still doesn't keep up with the pain (like, at all. 1800mg a day.)

> sees a urologist who diagnoses me with Pelvic Floor Dysfunction and almost doesn't test my urine which showed crystals & a lot of bacteria (he acted like I was crazy for feeling something solid through my urethra.) He went ahead and did a CT to check for kidney stones and found an 8cm ovarian cyst (that they found 2 yrs prior & didnt tell me or my mother about even tho it 6.7cm at the time) and an L5 pars defect.

> gets reoccurring chest pain & palpations for months, one day it gets really bad and a nurse line tells me to go to the ER. ER diagnoses me with Anxiety.

> finally sees a spine doctor who diagnosis me with bilateral sciatica, spondylosis of my L5, and says there's a good chance my spine is popping in & out of alignment. Sends me to pain management.

> pain management switches me to pregabalin. It helps a little bit for a little bit. Eventually have to stop taking it due to extreme mental fog & personality changes.

> try dry needling therapy for 3 months for my lumbar back. It always relieves me for a short period but ultimately was making matters worse in the long run.

> having tons of flares ups all the time up until we had to move & 30 minutes into moving small boxes my back pops out of alignment, my legs give out and I'm in, once again, the worst pain I have ever experienced in my life for the rest of the day until the next morning I take an Epsom salt bath, feel a pop, and finally have some relief. I was sore from that flare up for a week after.

> find a new primary after moving, ask about possibly having hEDS and he sends me back to rheumatology (who found nothing) saying they have to rule out everything else first.

> go back to pain management, try a couple different things that either made matters worse or did nothing at all and decided to take a break from the disappointment.

> everyone keeps telling me I have fibromyalgia & anxiety despite the fact that it doesn't actually make sense with the pattern of my pain, doesn't match up with my symptoms &doesnt explain half my symptoms.

> symptom page is now 3 google docs pages long & after receiving my medical records I find a million inconsistencies, claims of me agreeing to things that were never discussed with me, and half of my reported symptoms are not even mentioned.

> have a dozen more symptoms that I'm scared to mention out of fear that I am going to continue to be dismissed, ignored— or worse, give them reason to think I'm seeking attention.

> completely lose hope for receiving the help I need.

> start having blurred vision and dysphagia, looks them up, reads about MS and realizes it fits nearly all of my symptoms. Make an appointment with my primary.

> goes to my primary, immediately is talked down to for "coming in the Friday before Christmas break" and "the only reason you got this appointment is because I had a cancelation."

> I burst into sobs and whip out my symptoms list just fucking begging for help, telling him I've been dismissed by almost every medical professional I've been to, most of my symptoms haven't even been recorded, & that I'm desperate. He agrees to finally help me, refers me to neurology (first time since this all started) and orders MRIs to check for MS.

> by this time I have had thyroiditis, a ton of infections, have horrible balance, tons of tingling and numbness in all my limbs, use a cane, been unable to work for a year and a half, worked with tons of physical therapists who don't know how to help my nerve pain, & have another ovarian cyst despite receiving treatment for PCOS.

> goes to the ER with my heart racing, vomiting, extreme fatigue and weakness. The doctor tries to gaslight me as they continuously tell me "You are a young healthy person. This is very psychological, you need a psychiatrist and psychologist." Until I am in literal tears because that treatment felt very uncalled for, especially because my labs hadn't even come back yet. I finally agree to see a therapist bc I recognize I am going through a very difficult thing in life and could use the extra support. I also felt very much like they were going to put me in a psych ward if I didn't agree. My lab tests come back showing I have low potassium & CO2. They treat me then send me home with 2 diagnoses: nausea WITHOUT vomiting, depression.

> neurology asks me a ton of medically irrelevant questions about school life, home life, relationship with my parents and then diagnoses me with anxiety without performing any tests.

> gets my second EMG that comes back clear

> finally gets my MRIs that shows cervical bone spurs on 3 different vertebrae.

> think I have FINALLY found the answer to almost all of my symptoms.

> goes back to my primary who says it's "just a little arthritis. Most people who have what you have don't have symptoms." & won't listen to me when I point out that I have every symptom indicative of complications with bone spurs in the neck (& I'm hypermobile)

> refuses to discuss why I have the bone spurs at age 22

> refuses to discuss the possibility of hEDS

> gets mad at me for not being treated for my fibromyalgia (even tho nothing works.) Keeps interrupting me to say it's just fibromyalgia.

> I say, "ok, we're done here" & get up to leave

> "you're leaving?!"

> "you just said nothing is wrong with me, I have the same thing everyone has been saying I've had for years, that I have the same thing I've been trying countless useless treatments for, what else can you even do for me?"

> "but I could get you a referral to a spine specialist!!"

> "you just said nothing is wrong with my neck. And I've already been to a spine specialist."

> "they could give you injections!"

> "I've already tried injections and they. Didn't. Work."

> "you don't even want a follow up appointment???!"

> "???? NO!!!"

[aflockofravens]

Hi discussion/rant about chronic illness and pain under the cut. It's mostly just me bitching fyi

Hooooollllllllly fucking shit I'm so over this. I say this every time I have a flare but Jesus fuck this one takes the cake.

I don't feel like anyone (in my RL) really understands how fucking exhausted and in pain I have been for the past 8 weeks. Like, I'm so fucking tired of being in pain.

And it's not even like. Achy. Or low level constant pain.

It's been an 8 on the pain scale every single day. I can get the pain down around 5 with OTC meds, weed and heating pads but I really can't do much when I'm that medicated.

Even though I went to the doctor early to ensure I didn't end up with nerve damage, there's still a chance that it's already happened and the thought of never being able to live without this pain is really fucking with my head.

I already went through all the stages of grief after my fibromyalgia diagnosis but I'm starting to feel like every time I get accustomed to the level of pain I experience every day... something happens to move the bar higher.

I don't want to do this anymore. And I don't feel like I have any fucking options.

My doc just keeps upping the pregabalin and it's only partially working 😮‍💨 I want the anti-inflammatory to reduce the swelling of the muscle but he won't give me anything since the OTC meds I'm taking are also anti-inflammatories (but they're not strong enough). He just keeps telling me to do physio stretches and I keep telling him I'm doing them the best I can but I can't do half of them and the ones I can do make me unable to stand for an hour afterwards.

I just have the bone deep feeling that I'm beyond the little remedies like OTC meds and stretches but I don't know what comes next.

All I know is I hurt. And I'm tired. I don't wanna do this anymore.

[cassthecheshire]

WHY IS IT SO HARD FOR PEOPLE AND THE GOVERNMENT TO REALIZE. ACCEPT AND UNDERSTAND THAT FOR US DISABLED PEOPLE WE A FORCED TO RELY ON AID EVEN IF WE DONT WANT TO HAVE TO AND JUST HELP US SO WE CAN AT THE LEAST SIMPLY FEED OURSELVES!!!

For those that don't know I am disabled. I have Agoraphobia, anxiety, Anxiety induced tics, Depression, Fibromyalgia, and PTSD. I applied to long term disability two years ago now and they initially denied me back in October saying I wasn't disabled enough. I have appealed and haven't heard anything.

Then I found out if you apply for LT disability then you can get temporary disability while you wait for long term.

I applied then found out I apparently only applied to SSD and not SSI as well and need both so that got denied.

Called LT disability and the worker said they don't typically tell you anymore about SSI if they deem you not qualified but you need to apply to both for some other programs.

So I applied to SSI and then put in for temporary again.

SSI skipped any phone call and denied me and then temporary finally came back to me with a denial for lack of paper work before the paper works due date. Note:I already had the paper work in but was missing a page that noone told me it had been missing.

I called temporary disability and then that worker sounded frustrated because he saw no reason it should have been denied at that point and said I just needed to reapply and advised me I should appeal or reapply for ssi again.

So I reapplied for temporary and automatically uploaded the required documents.

I then looked into temporary disability a bit more and while it says that you just have to have a claim for long term pending they only give you paper work for SSI to reimburse them.

This is leading me to believe they only give you temporary disability if you have a SSI claim pending which if true is really crapy.

I also looked into SSI requirements and I meet them due to having a mental illness that qualifies me as unable to work.

Tried calling LT disability yesterday and the automated system basically said call between Wednesday and Friday due to them have too high a call volume that day.

Now because of all of this and temporary screwing up and coming up with new reasons to deny me I will most likely loose my foodstamps.

HOW AM I NOT DISABLED AND DONT QUALIFY FOR DISABILITY WHEN I HAVE AGORAPHOBIA!!

It is so frustrating when I get told "Oh no you can work as you aren't disabled enough." When I can't deal with people. Like I legit have to have one of my 3 "safe" people with me doing the social interactions for me whenever they can pull me out of the house to get me groceries.

I can't handle phone calls either so being forced to make these calls over and over again has me completely drained and my tics and anxiety are at max levels which causes my fibro to flare and I am just miserable.

I want to work I want to get back to having to not worry about feeding myself or getting basic life needs.

I am working on it with doctors and my therapist and striving to get myself better but it is really hard to not just want to give up when your own government refuses to do anything to help and fights you every step of the way to make sure you don't qualify for their help.

For long term i am trying to take next steps to push them to approve me but I cant do that without having temporary at this point because I need money to just do basic life things at this point.

I hate that the government really does try and make it so they don't have to help you when there are plenty of people on disability that don't actually need it.

[themathomhouse]

tw suicidal thoughts

There's a line in The Muppets Christmas Carol that's been haunting me since my boyfriend left me last month. No, not the song about love being gone - that's more like a flood of tears - when the Ghost of Christmas Present sings, "it's true, wherever you find love, it feels like Christmas".

Christmas has been complicated for me for many reasons for a long time. I'm Jewish but my family isn't religious, and we always did Christmas. My relationship with my mother in particular can be difficult, and she's very critical of me. Christmas hadn't been especially enjoyable for me for a long time, and every relationship I'd had they never wanted to spend time with me around then.

But this year, I was going to spend several days with my boyfriend and his polycule. My metamour is also Jewish so I'd hoped we could do Chanukah together too, but even if not, we had activities planned and the whole thing was going to represent me finally being with people who felt like family.

Then he left me out of nowhere last month. After spending most of the week telling me he loved me, he then said actually he fell out of love with me months before. He said he didn't know who he was anymore.

He walked out of my life at a time when my mental health was at its worst, and he took whatever happiness I had left with him. When I don't feel completely empty, all I feel is the love I still have for him and the family and the abject despair of knowing that's gone forever. The only person who feels any of that is me.

I really didn't want to do Christmas this year. It just represented everything I'd lost. But, Christmas Eve, I was persuaded to go to my parents' house for Christmas dinner. I'd put in with my sister to get theatre tickets, but I wanted to bring something for my parents to open so I dragged myself shopping.

Huge mistake. I was surrounded by people all excited and planning the next day, people talking happily and decorations everywhere. I kept seeing things I could have got for the poly family, kept being reminded of the activities we'd planned. The things they were probably doing right that moment without me. Probably not even thinking of me. I saw so many couples and just couldn't do it anymore.

I left without getting any gifts. Security stopped me to check I was okay, with how red my eyes were and how hard I was crying; and it was humiliating.

I sobbed in the car park and could see people walking past staring at me. Eventually I decided to just drive home anyway.

And on the way home I wanted to end my life.

All I wanted - all I still want - is the life he promised me. The adventures we were going to take together, experiences we were going to have, me maybe moving in. I'd incorporated him into all of my life plans, and taking him back out of even ones I'd had before was just miserable. If that's all life is going to be, I just don't want it.

The only thing that stopped me from driving off the side of the road down a drop was my cat. She still needs me. Nobody else wants or loves me, but the cat is completely attached and I think she'd struggle without me.

Today I'm realising that I don't feel in the Christmas spirit because I don't feel loved anymore. And I don't think I will again. Not like that.

I feel grief and heartache. I'm going to stay alive for the cat, but I feel like an empty shell where a person used to be. There was a light that's just burnt out forever.

Dragged myself here (giftless) for Christmas dinner. I feel atrocious. My fibromyalgia has flared horrendously and everything hurts, and with how bad my acid reflux has been I'm not sure how much of dinner I will be able to eat. But, I showed up. Might as well make the best of it.

Mum showed me a perfume she'd got. I sniffed it.

I don't often get allergic reactions to perfumes, but whatever it is that's in things that I can't tolerate must be in that one. My throat started to close up and I had to take an antihistamine and hope that would be enough.

Part of me hoped that it wouldn't.

It did kick in. I feel like I've been hit by a lorry, but I can breathe.

I really can't take anything more. There isn't going to be a final straw - a straw might be too large and heavy as a metaphor for what it will take for me to break.

[kaalandra]

What does PMA mean to you?

Okay, I'm going to touch a delicate subject, bear with me, especially my fellow disabled babes.

To me, it's a kind of oral motto of what I've doing for years. A translation. Because I want people around be to be happy and well, I'm always a positive, optimistic force. And, as I said previously, I've been bullied for that, being called "fake" for that "because no one can actually care so much about everyone".

I've been in @therealjacksepticeye community for about four years, four and a half years, now and, for some reason, I feel like PMA isn't quite the same for everyone.

I tuned it down for a while, because I was kind of a "people pleaser" too, and I didn't understand why I shouldn't care about others. I mean, we're on same boat, why not make our collective trips around the sun pleasant for everyone?

But, as said numerous times on this blog, I have fibromyalgia. And this thing is a molden sandwich... Because not every doctor actually accept this syndrome as it is, a lot of them thinks it's actually AFAB people who can't take it and are overreacting. Nice. Can't wait.

It didn't put a hole in my way of giving and caring. I never stop once being optimistic and kind for my friends and family.

Put it did put a hole on the kindness and positivity I was giving to myself.

I stopped being caring, attentive and positive about my body. I treated like a burden.

Even worse, people around me started to go with sentences like "see, even in their illness, they find force to help others" and different stuff like that. My caring and solar nature was suddenly inspiration pr0n for abled folks. Those people used me, as an example for it is to be a good "disabled". And it drove me insane. First, because stop feeding us with those of us who can, at a cost you'll never understand, act like abled people. That's not what disabled people need...

And then, in the community, people were throwing "PMA" at each other, as if talking about issues was negative. As if those three letters (or words "Positive Mental Attitude") was some kind of magic spell that would make everything go away.

It doesn't. Instead of feeling loved and accepted, I felt judged and out of place. Those words Seán put on my nature became empty words that cannot help me. So I took a biiiig step back from the community, and started to reflect on what that acronym maint to me.

Obviously not the same as abled people who told me to tune it down because my views on the matter were getting the vibe down.

Being positive doesn't mean you're always happy and shinny. It doesn't mean closing your eyes on what's problematic. If it was, you'd be taking Joy Pills like gummies.

I left the community because, when I tried to reach out to talk about illness or anything "not positive enough", either numerous people throw PMA at me like it was the obvious solution, dah, or they just flood with more shiny things to make my post disappear. And I'm pretty I'm not alone in this.

So, what does PMA mean to me?

Well, it means to be true to myself, to accept my optimistic nature and keep hoping for the best.

It's also a reminder that I can always find some positivity in any situation. It won't make the bad go away, that's not the point! The point, for me, is to never lose track of the light, even when I'm down in the darkest pit.

Some examples? I had a fibro flare (a big rush of immense pain for days on ends), I took my meds and all, of course, being positive doesn't replace your meds, then I went back to bed, blinds halfway up, window opens and I just stared at the blue sky and enjoy the outside air on me. It's not much, it doesn't do anything on my pain level, but it does help me relax.

Even more than that, it's actually helping me with my grief.

I lost my (unique) grandad on the 5th of June 2020. He was 88 years old. I was not ready, at almost 30, to say goodbye. The whole time he was in the hospital, I was stuck a thousand kilometers away from him and my family, unable to move because of quarantine. I talk with him on the phone as much as we could, but his lungs were filled with water so he didn't had much stamina before being out of breath. My grandfather and my grandmother helped my mom raised my brother and I. He was my true father figure and I love him so much. And I miss him so much too.

Don't get me wrong, I cried my eyeballs out and I still cry a lot everytime a new memory of him gets to the surface of my mind.

But, as always, I tried to find some positivity in the situation, because when we cry, we cry for us, because we're the ones who have lose someone, we don't cry for the one who has left.

And I find some. My grandad was sick for almost four years. He had a septicemia when he was 85, which the doctors didn't find right away, so it gave him a wound on his left leg that never healed. Because his body was already fighting an embolism (he had way too much water in is blood), his heart was already tired. So, when he left, he left all of his pain, all his suffering and depressed state behind. He was freed. He also left peacefully, during the night, while sleeping, and that's all I could have wished for.

And, reflecting on that helps me a lot. It gave me a bit of clarity to help me focus on all the things he taught me, what he showed me, the tricks he did, his laughs, his proud smirk he tried to hide behind his moustache when my brother or me did some mischief but it was actually clever, the hours we spent together doing crosswords since I was something like 5 or 6 (and yes, he did ask me if I had an idea for every word, explain to me why my ideas couldn't work and always congratulated me for trying, and even more when I remembered the word from another grid).

Yes, his body doesn't carry him anymore, but all of our family carry his essence within us. And we can all spread his own mischief and tricks, so he'll never truly be gone.

That what's PMA is and does for me.

PMA is not the way to avoid the darkness, it is the light you bring with you to go through it.

[thedisablednaturalist]

My mom has become IMPOSSIBLE to deal with. I can't even ask her a simple question without her being bitchy or passive aggressive. She insults me and yells at me and when I tell her to stop she fucking laughs. My fibromyalgia flares up when my heart rate goes up and I get stressed. I flare up so bad my hands shake and I feel like I'm going to pass out. And if I tell her to stop?? That just offends her. And it gets so bad the only thing i can get out is Shut Up because at that point I just want her to stop. Sorry I'm not saying it politely anymore. But she doesn't fucking listen when I say it politely. She HAS to have the last word. She told me it didn't look like I was in pain. Yea cause whenever I let the mask slip she makes fun of me and calls me dramatic. I just want it to stop. Im in fight or flight mode and I do anything I can to get away from her. Yes I yell because she pushes me to the edge with her yelling. Yes I curse. Yes I say mean things. Because at that point I'm backed into a corner and she won't fucking stop. Because if I don't defend myself who will. But then she just takes it as proof that IM the bully. That IM the one with anger issues.

I just have to remind myself that I didn't raise my voice once for the 5 years I lived away from home. No matter how stressed or mad I was. I'm not the person she forces me to be.

[newhologram]

New's Ketamine Diary

5.28.22 Week 9/10 of at-home K Cosmic Clockwork

Today was my last day of everyday cryotherapy. I'm proud that I was able to be consistent. I went almost every single day, only skipping when I needed to work. I'm sad that it has to end for now but this will free up my time and money a lot. Driving there every morning was definitely wearing me out. I plan to return to a few cryo treatments a month when I'm able to.

Still dealing with pelvic/lowback and shoulder injury pain but it seems like the newer dose is starting to handle my fibromyalgia and nerve pain. I definitely find myself surprised by a little more stamina than usual on some days. I still have excessive daytime sleepiness from the narcolepsy but it feels like my body is starting to have a higher threshold. I saw this result about a week before I finally tried microdoses of kratom. That is also going well for my symptoms but I'm still in the experimental phase so we'll see.

Shoulder seems to have improved rapidly over the past few days. I don't doubt that red light therapy + everday cryotherapy has helped it heal fast. But if I overdo it and use my arm too much it flares a lot, so I'm still wearing my sling for another week as needed. Ortho appointment is in a few weeks. Really hopeful that this is just a bad sprain and not a tear.

PMS depression started 2 weeks before I'm due as usual. Really rough, my brain is just white noise when this happens. Just had to hunker down through it with video games and cartoons as usual. Felt very hopeless, worthless. Or maybe not worthless, I don't feel that too much anymore. I know my worth and my value, but what I feel is mourning that I can't really do something bigger in this state. I don't know exactly how to explain it. Being creative, ambitious, and chronically ill (and a Capricorn lmao) is a very difficult soul archetype mashup. Preparing myself for my period next week. For months my periods have been "I think I need to go to the ER" level of agony and even though I just went for my shoulder, I might just go if it gets bad enough. At the very least we can have on file that this is what my ovary/endo/bowel is doing to me every single month.

Had a mellow trip after my primary follow-up and then 5 days later a bit of a more intense one to process the additional stress of now needing to see an oncologist (muffled screaming). Decided to play the same music that facilitated the last deep dive I did. Not sure what it is about that album but it's been the perfect music to hold my hand through some deep processing. Melted into a lot of timelines, different versions of myself, different fates, different planets, peered through the veil and grasped at the universe I want to experience. Tried, tried, tried to put my trust in the behind-the-scenes clockwork of the cosmos.

Because if these issues had been found 5-10 years ago, maybe medical science and technology wouldn't have been able to help me as much back then. So maybe it is better that I went through what I went through in order to become who I am to go through this now when doctors know more about how to treat this. At least that's what I'm hoping.

Finished season 2 of Russian Doll. It was very helpful to watch right after k therapy. They still did a really good job of showing what these kind of deep psychological soul trips are like. Once again the overall story resonated perfectly with that I'm going through. Coney Island, and all that.

It is interesting how the past 4 years we've been hammered by media about this kind of concept: the other versions of us living other lives, the other versions of us who didn't make it. Such deep, vivid dreams that are so real and long they feel like we were living out another life--and can we connect with the other us somehow? Can we replace them or change the past to make our present better or are we stuck with the cards we've been dealt? The dreams are so real and good that when we wake up, it's confusing to find ourselves in this timeline.

More recently it's ramped up almost to a comical point. So many movies and shows that I feel are tapping at my aquarium to wake me up from the dreams where it's flooding. The water is brown and surging. I use the last of my strength to push a friend to the surface. I can still see light at the top of the water and as I sink to the bottom, I think, "I don't know if I can make it back up for air." I've always been a good swimmer, but I'm so tired I can't move anymore. A sense of peace and acceptance washes over me, mixing with the terrified dread of being in deep, dark water. There are giant eels in some dreams. But sometimes it's just a mall, filled with water and debris and screaming people. I either somehow find the strength to swim back up, or I wake up before I've drowned. I've had several of these dreams lately.

I want to make the choice to not drown. But I also want to be realistic--and prepared--for life.