I think its pretty ridiculous chrons doesn’t get more recognition.. Of course its great for all the research of other illnesses but where’s the awareness for chrons and UC? It really sucks having to see someone I love suffering from it and knowing there’s nothing I can do to help and the people who could potentially make a difference don’t
I can’t stop thinking about food. Idk if it’s the prednisone or what but every twenty minutes Im like ‘can I eat now? Is it acceptable to eat now? Can o eat? What should I make to eat? Am I hungry? Or is it the prednisone? I want ice cream. But am I hungry? Or is it heart burn? Temple soup would be good. Can I eat now? Pasta! Peanut butter and crackers. Is it acceptable to eat now?’ Im loosing my mind.
Hi there! Is there a high chance of autism being comorbid with auto-immune disorders/diseases? My dad has a bunch of auto-immune stuff (and I've inherited most of it) and I have endometriosis. Is there a correlation between a parent with auto-immune issues and a child with autism? I'm rambling, but hope that made sense...
Right, so! This is absolutely a great question, because, short answer to what you are asking is yes, there is an increased comorbidity of autoimmune disorders in autistics, in addition to the better known increased comorbidity of connective tissue disorders.
To be clear, what we are actually answering is whether or not there is an increased comorbidity of autoimmune disorders with autism. Comorbid means, more or less, “occurring with” - so anything that isn’t a part of autism is comorbid with it. A cold, for example, is a comorbidity because it is diagnosed based on its own criteria, in addition to and not because of the autism.
At least, that is what it means medically. In psych “comorbid” can mean occuring with or because of. At least, that’s how it is used. I tend to stick with the medical definition because when we talk about ASD with autoimmune, we’re talking about medical stuff.
Anyhow, there is a known correlation between increased rates of autoimmune disorders and autism spectrum disorder. I know specifically that Rheumatoid Arthritis has been studied in parents of autistics, and that there is a correlation there, too, which isn’t really surprising to me because parents are often times “sub clinical” - that, is they have autistic traits, often including the common comorbidites, but don’t meet the clinical definition of ASD.
I’ve actually wondered if the whole thing with autistics and having bowel issues is because we’re seeing a spike in things like Chron’s Disease, which is an autoimmune disorder.
Endo, of course, is a big one. More and more science is leaning towards it being an autoimmune disorder, and anecdotally at least it seems common - at least in the circles I run in, I don’t know many autistic people with a uterus that don’t have Endo or endo-like symptoms. Of course, I have rheumatoid arthritis, which is also autoimmune. Chron’s is common, as is Lupus, though not quite as much as the others.
TBH, I’m of the opinion that every autistic that has physical symptoms outside the ASD box that can be explained reasonably with an autoimmune disorder, they should consider seeing a rheumatologist - those would be the specialists that deal with autoimmune stuff.
Thanks for asking! If you have questions about a specific autoimmune disorder, feel free to send another ask. I have access to my school’s library database from home, and I am happy to use it for quick searches to get and idea of the basics.
Literally and I’m so sick and tried of this disease. Why can’t I be normal? Why did I have to get this disease? I feel so weak and exhausted all the time. I’m disgustingly skinny. I want to be normal again. I hate this gosh darn disease. It is honestly taking over my life little by little..
For people who think PTSD is something you can “get over” or just “suck it up” can eat my entire ass.
PTSD is actually not just a mental disorder.
It’s a physiological INJURY to the brain. Parts of your brain can literally shrink.
The brain stem, which we share with animals, is our instinct of “fight or flight”.
And for people with PTSD, that part of the brain is constantly under stress. Victims of something traumatizing are on watch, scared and physically upset. Which by itself can be dangerous, but it has long term affects like heart disease, and cancer.
It’s also a chronic condition, just like chrons disease, diabetes, asthma, etc.
SO PLEASE STOP. IT IS NOT SOMETHING THAT WE CAN CONTROL, OR JUST PAUSE, IT IS LITERALLY A LIFE THREATENING ILLNESS.
Can’t really think of a title for this one... awks...
Hello blog readery people :) So it’s Saturday afternoon and I’m not gonna lie I’m in a bit of a weird mood, kind of an in-between mood… am I happy? Meh… am I sad? Meh… I don’t even know anymore…. I can tell you one thing though, I have been SO EMOSH!!! - I am in the process of coming off my antidepressants which I’ve been on for 14 years and it’s naaaaat been easy. I’ve cried freakin’ rivers, ok, probably puddles- but hey theres a lot of water in a puddle!! - and I have also laughed like, a lot. It’s like I can feel everything so much deeper than before, and I’m still not sure if I am doing the ‘right’ thing or not…. it’s like, do I keep taking a chemical that affects my brain and dulls all my feelings a bit and makes it harder to cry… or do I FEEL everything but maybe get some of the highs back too?!?! Time will tell eh!!
So my last two weeks has been pretty good I guess :) Can’t complain too much… although I’m sure that’s basically what I’m about to do! ;) I’ve had a few great writing sessions beginning of the week including one with Reece who is mega awesome!! We wrote and recorded a topline for a proper coooool song- thing is, we were both so sure we nailed it, and it’s a song I’ve had stuck in my head ever since and feel it’s SO strong, but we didn’t get the bloody cut did we!!! :(
It’s such a shit industry, where you just constantly do your best work and put hours and days and weeks (sometimes years!) into songs and send them off to usually not even get a response, or to get a ‘no’, and then you’ve just gotta pick yourself right back up and do it over again, and again until one day (please for the love of god) you get a yes! And even then I’ve had ‘yes’s back which then haven’t actually happened…. It’s cool though I’m sure we will use what we wrote on another song but it’s just that constant rejection that makes you doubt if you’re any good or if you should bother again- but of course I do! I have to! Even when it’s a ‘no’ I love writing songs more than anything and am pretty damn determined!!!!
Mid week I had a few meetings with some people I have been potentially thinking of working with - I think they went pretty well, but again I am never quite sure wether to mention my health or just cross that bridge if and when…. I usually just see what the vibe is and on this occasion the guy I met with actually told me all about his health issues so I went for it! You never know who is suffering what and we seemed to bond over this so that was good!
I had a few admin days and days of resting but then had a mega awesome night on the Thursday! A good friend of mine who works in publishing invited me down to ‘Fekky’s album listening party- he is a well known rapper signed to Universal & Island Records and it was an industry event so I had to go!!! I had all the usual worries… will there be a queue to get in, will there be anywhere to sit, what if I feel too ill and have to go home bla bla bla, but all worked out SO well!! I got a bus all the way there (massive win for me legs!!) and then the night went without a hitch. I met so many great industry people and got lots of email addresses!!! I have of course done all me follow up emails and really hope something comes of it! It was also great to meet Fekky and hear the album- not totally the kind of music I am ‘into’ but genuinely really enjoyed it :) And great to catch up with Ben too! GOOD PEOPLES!!
The next day was a rest day and then in the evening it was one of my best friend Katie’s birthday dinner. I felt so shite. I’d almost cancelled a few times but pulled it together and was sure I could get through it, but for me it basically sucked balls. I’d been in tears because I’d felt so unwell all day and on the way there but was not going to turn up crying at someone elses birthday thang!! (Even I wouldn’t do that ;) So I got there and I smiled. I really tried to smile lots, but when people asked me how I was I had to change the subject as I literally couldn’t talk about anything to do with me without bursting into tears. MAJOR AWKWARD.
My best friends who I live with were all there and all I wanted to do was tell them how gutted I was feeling and collapse in a heap on the floor and cry my eyes out - and I really do mean gutted- heartbroken- I get into this place of utter despair quite quickly, as though my life is completely over and not worth living and that I just can’t do it anymore, and like no-one understands. I think it was brought on because I’d had such a great night the night before and made all these great contacts and then had woken up feeling so ill that I was in bed / on the sofa all day, and so it was like, what’s the point of me even going to that event and networking if I can’t even really function the day after - how am I meant to live the lifestyle of a singer / songwriter when I have to rest all the bloody time - ok so just writing that sentence has made me well up…. I just can’t put into words how much I want to be well enough to follow my dream and work at it every day. I know I should be grateful that I managed to go to that event in the first place…. But it’s just not enough. Ugh, anyway… I got through the dinner part of it but then had to leave. They were drinking and having fun and it was like being on a diet sat with ALL the cakes in-front of you.
I could’t sit and watch them- I’m sure this sounds so bitter- ofcourse I am so glad that Katie had a lovely birthday and of course I want my friends to all be happy but I obviously have major jealousy issues!!! So I said my goodbyes and they were all very sweet to me and I left. As soon as I got out of the door I phoned my poor mum and sobbed down the phone. I could hardly breathe I had been holding it in for so long! I had a complete crying panic attack at kings cross station but luckily mumma bear was on the end of the phone to make everything that little bit better. I spoke to her and my wonderful step dad for about half an hour and they kind of got me to just focus on one thing at a time, like getting home, getting to bed, and what I had to do the next day…. Which just so happened to be a gig day- probably also why I felt so panicked about everything!!
The next day was like I say, gig day- The only money I have coming in at the moment is function gigs, so weddings, birthday parties, cooperate events etc and I really do love them….. but never really feel well enough to enjoy them!! However, this one went pretty well! I took my lil’ gigging stool with me as my legs just get too painful if I stand up on stage the whole time. And what with a mix of determination and adrenaline I got through the gig.
Then the Sunday was spent in bed all day - I couldn’t even get out of bed to pee until about 4pm…which probably aint good for ya!! Sorry…. TMI!!! But I was SHATTERED… so ordered takeaway and did utter nothing all day :) - At least I felt like I’d done something to deserve this rest though :)
The next week was again a mixture of resting days and meetings, oh and a Crohns flare up I think…. I know I only really talk about my M.E. on here, but I guess I should try and be a bit more open about my Crohns… my bowels certainly are ;) (see what I did there) hahaha… but Yea, I’m not gonna go into too much detail don’t worry… but last week really did have a fair few ‘moments’ where I really fucking hated my silly silly body and what very random situations it had gotten me into….. I had a little op a few months ago and am getting all the results etc next week when I see my Crohns specialist… so fingers and legs crossed she can help!! I’m sure I’ll let ya know ;)
Then I went home to Sussex these last few days to see my cat, mum and stepdad (in that order!! Haha - JOKING) and go to the dreaded dentist!! Ahhhh!!! - it actually went ok but I do have to have a filling (woi oi) in a few weeks so I will be bloody terrified then!! Is ANYONE ok about going to the dentist? Please do tell me…..nah didn’t’t think so!!
Right… I’m gonna go and paint flamingos on my nails now - as you do! Oh I haven’t mentioned it yet- tomorrow is our yearly house party so I am sooooo looking forward to it! I am praying to the M.E. gods that I am well enough to enjoy it at least for a bit!! So I’ll tell you all the #clubtropicana (party theme) goss next time!! Let’s see if I can get away with having one drink!! Maybe even two! Ah!
- Please do feel free to get in touch if you want to- I will reply ASAP and LOVE hearing from you guys! You are all wonderful and having this support network means a lot :) We can get through all these shitty times together right?? Right!! ;) xxx Mwa xxx
Kathleen Baker: Olympic Silver Medalist with Crohn's Disease
I haven’t really seen this on Tumblr, so I decided to share it. I’m not going to link an article because most are filled with inspiration porn.
Kathleen Baker is a 19 year old swimmer for Team USA. She just won a silver medal for the Women’s 100 meter backstroke in Rio 2016. She had a very impressive time of 58.75 seconds, just 3 tenths of a second behind the gold medalist. (For perspective, the world record for this event is 58.12 seconds, set in 2009.)
And Kathleen Baker has Crohn’s disease. She barely made it to the Olympic trials, and luckily for her both the trials and her Olympic event have fallen on low pain days. She has lived with this disease for several years, and it has greatly impacted her ability to swim, train, and all aspects of her life.
I’m just really happy to see a fellow spoonie dominating in the olympics.
To give you an idea of why i love my princess so much.
I have Chrons disease.
I have 4 docs appointments in the next month to see if i have cancer (biopsies, MRI, CT)
We haven’t seen each other in a week.
We have plans for Sunday.
I told her “I’m actually not feeling very good”
She went from “Woooooo sexy times, Little times, fun times!!!”
To “ It’s okay daddy I love you, you’re the best daddy. We can just cuddle. You make me so happy”
In .2 seconds.
Swear to god I’m gonna cry.
I cannot, as of today, tell you where I work or what I do. But I can tell you I work in retail and I am quitting.
I am not quitting as a person. I’m not quitting because I need more money. I am quitting because of my ileostomy.
My ileostomy which has never before been a problem until just yesterday when I was written up for not fulfilling my duties.
Because I made a coworker uncomfortable. By just existing.
As many of us do, we let our managers on duty know that we have medical needs that need to be met. I personally will just say “Hey, I got a medical issue, I just use the bathroom more than others, that ok?” to which the normal response is “Sure” and sometimes a question.
Now, if they ask that question, I’m going to tell them it’s an ileostomy bag. If they ask what it is I will tell them.
It’s not my fault she was uncomfortable. It’s not like I went into detail.
I got a write up for it and felt that I was forced to sign because the rest of it I could not dispute against. I went home and filed a report with Ethics and I’m going to file a report to the American Disabilities Act offices (once I find where they are or who to send to).
NEVER LET OTHER PEOPLE, ESPECIALLY YOUR COWORKERS AND BOSSES, PULL THIS SHIT.
I wanted Cymbal Rush to capture the feeling of being suffocated by the arduous nature of everyday life. You know when the pressure gets too much and you’re surrounded by uncaring people in a cold world? The song came to me naturally when I needed to take a shit while waiting in line at the supermarket.