Published on 12, July, 2020
I've been going through some really difficult times recently.
I have pudendal neuralgia. Pudendal neuralgia is chronic pelvic pain that originates from damage or irritation of the pudendal nerve – a main nerve in the pelvis. It causes a burning, crushing, shooting or prickling sensation, which develops gradually or suddenly, but it can be constant. It interferes with all aspects of my life.
I also have IBS for years now. Irritable bowel syndrome is a common condition affecting the digestive system. I get all sorts of symptoms from this. Triggers are foods, stress, hormones, spring allergies. So considering how sensitive I am to the smallest things, my life feels like living hell most of the time.
A couple months ago I had a diverticulitis attack on top of that. I ended up in the hospital howling in pain in the middle of the night. After antibiotics and liquid diet I feel better, but still get jabs of pain sometimes. I had a colonoscopy to check the extent of the damage to my colon. A polyp was found and excised but the specialist WASN'T able to remove it for testing (to see if it was benign or malign). The whole process leading up to the colonoscopy, recovering and finding out the results was extremely scary for me. I couldn't sleep and went into an even worse depression. In November I'm supposed to have another colonoscopy to check if the polyp came back. The type of polyp, my age (too young for this type of polyp) my other symptoms, the duration of time I've had them and my doctor's decision to do another colonoscopy so soon instead of the usual, once every 10 years, are all making me lose my mind.
My main hobby is food photography. My camera and lens fell off the tripod 2 months ago (I hadn't screwed the l bracket that was attached to the camera onto the tripod properly). I sent it in for repairs and got it back only now, due to problems with parts not being delivered because of brexit and covid. I can't think about food photography now, I can't even think simple thoughts some days. Which is frustrating. I don't take any recreational drugs, I don't even smoke anymore, I can't drink (only makes me sick and paranoid), I don't have anyone to talk to about things aside from my partner. I feel guilty about continually stressing him out with all my mental and physical health issues. I try to stimm to help me cry, laugh, calm down, but it's no longer enough.
I stopped talking to my adoptive family almost 6 years ago. Too much trauma and abuse there.
I sent in my self referral for an autism diagnosis 3 weeks ago and I am afraid I "didn't sound autistic enough", that I didn't seek out professional help often enough to be considered autistic, I'm afraid all my past traumas are going to distract the person/s reading my self referral and think it's CPTSD or BPD instead of autism. I'm afraid I mask too much but not enough. The wait is killing me.
A year ago I realized I was drugged and raped when I was 16 , I'm 34 right now, and am not sure how to deal with this. Bits and pieces keep popping up in my mind and I don't know what to do. I just want to scream!!
Since working from home, where little social interaction is needed, I've been performing even better at work. I've specialised in some systems and due to my attention to detail and different thinking can find solutions and help a lot of different people. My line manager only has words of praise for me, which means my name gets put forward a lot. I am proud my work is appreciated but I feel overwhelmed. And now I am getting job offers from other departments where I'd have to have waaaaaay too much social interactions and possibly even go back to working from the office. A promotion is expected, considering the time I've spent in my current position, my high levels of standards, and my skill set. But I want to move "sideways" to a department where I'd be working with systems not people!! I've been told there will be job openings in a month's time and would like to try applying for one of these. Yesterday different 3 people contacted me about a job, better pay, but as above heavy on the social interactions. I am too terrified to accept it. They clearly want me.
Yesterday I went partially blind in one eye for 20-30 minutes. After ascertaining it wasn't a stroke I called the emergency number. By the time I got through to someone I could see again, but my head eye and neck started hurting. I couldn't get any definite diagnosis in the hospital, since all my symptoms were gone by the time I got there. But I am seeing an ophthalmologist tomorrow. Hoping it's just retinal migraine and not something more serious.
Needless to say I suffer from insomnia which makes things even harder to deal with.
I don't know what to do to "take all this weight off of me" for at least a little while. I am in desperate need of a break! I feel I can't breathe and can't really find the words to express my thoughts correctly. I am sick an tired of crying and getting sicker and sicker.
Digestive system complaints are quite common in autistics, I have IBS and diverticular disease. If I get a bad attack I stop eating solids and only drink Lucozade and eat consommé (clear soup) for a few days to rest the colon. The sight loss sounds like migraine, I get very occasional migraines proceeded by unpleasant visual aura. The first time it happened the left half of my vision disappeared for about 5 minutes, which was alarming, everyone in my family appeared to me to only have one eye.
I had never sought medical help for anything other than physical ailments my whole life, when I sought an autism diagnosis at 59 years of age, so I wouldn't worry about that. A history of just about coping with everyday life, as is my story, is quite sufficient. Try not to compare yourself with other people who might be more severely affected by autism, just concentrate on how your traits affect your quality of life and how they make things difficult for you.
In regard to your job problems a diagnosis should make things easier for you. Once you are diagnosed, your employers, if you choose to tell them, are obliged by law to make 'reasonable accommodations' to make your work as easy for you to perform as possible. This would include taking your opinions of what form of work would be most congenial for you very seriously. At my former work, I took early retirement last year, I moved from a role I enjoyed, working closely with 6-8 people, to a job where I interacted with 40-100 people a week. I found my new role much more stressful, had I been diagnosed as autistic at the time, my employers would have been constrained to find me an alternative role.
Thank you Martin. It matters so much when someone else can understand what I go through, even though I don't wish half this stuff on anyone else.
The only thing that is truly under my control is my future job. I don't want to accept a better paid position at the cost of my mental health, which is already pretty strained, even if it's obvious they want me. I even had a catch.up with the person I'd be replacing this afternoon and she was almost trying to "sell the job to me" and give me pointers. At the same time I'm afraid of passing this up and not getting the other "safer" job I'm interested in, with less social interactions, in a month's time, when they'll finally have some openings.
I find it difficult to disclose too much of my health at work, for fear of getting stuck in certain jobs, being left out of things and people just assuming I'm not going to be able to do something because of some idea they have about disability and autism.