Rare diseases awareness month

Sharon_Loose

https://community.king.com/en/candy-crush-friends-saga/discussion/comment/1399277#Comment_1399277

I know where you are coming from @fabke we took my husbands niece in when she was 15 ( this was during the time my mum was still living with MND ) she had been self harming from 11 yrs old and her mum was taking her out of school and getting her drunk at 15. We helped her get through her GCSE’s and A levels and she went to University where she met her now husband, they both got good degrees and moved to Belgium to do PHD’s they are still there, she is 30 now but the last couple of years she’s been in and out of institutions after attempting suicide and was finally diagnosed with BPD. She copes with life but spends most of her time indoors playing games and doing crafts, she is a very clever young woman and has a wonderful understanding husband. You learn to cope with these things but you must never feel that you have to cope on your own, there is always someone willing to listen. Take care 🤗

Sharon_Loose

Thankyou@CassD sorry to hear about your mum and your sister, I am one of the lucky ones at the moment although I have autoimmune problems, they caught my RA early on and tablets have kept it under control mostly, I have problems with my hands back and feet but considering my diagnosis was in my early 20’s and I’m now past 60 I do alright, especially since I have started walking in the countryside at a gentle pace building my strength back in my legs. I was spending far too much time sitting around. It does wonders for your health both mentally and physically. Mind you that said I still manage to top 11 hours a week screen time. Take care

fabke

Thanks @Sharon_Loose for your support

CassD

Hi @Sharon_Loose ,

My sister was diagnosed with RA at 13, but my diagnosis was not made until I had a very bad episode in my mid-30s. I try to keep my mind active when my body isn't and that's how I found this lovely Community. I also have my faith which keeps me strong. Take care and stay safe.

Sharon_Loose

Hi @CassD that was an early onset for your sister it must be so difficult for youngsters. Take care too.

actipton80

I feel less alone reading these. I have autism, sensory integration dysfunction, some mild visual impairments, and also been diagnosed with depression since high school, and generalized anxiety since grad school. I also have chronic pain that has not been diagnosed yet. I've been on SSI for years due to my autism making it hard to find jobs and get through the hoops required to obtain them, and also my vision and sensory issues make it so I can't drive. If it wasn't for my faith I don't know what I would do. I would really rather work than get government benefits, and this year with be the year because my parents want me to move out. I'm 40, but still living with parents at that age is common for people with developmental disabilities, even if they have the brains to get multiple college degrees.

fabke

@actipton80 keep strong, you have a big problem if your parents say no.

Try somebody experienced to talk with your parents. Chronic pain is hard to prove or they don't want to pay and you can't always prove it, but it's hard, try volunteer work. And i hope you find a job. It's possible but difficult.

It's good you're strong, keep it that way and you will found a job.

I live back home from my 42y old (now i'm 50y) with my mother, she's 83y old now, her boyfriend and Chihuahua's. Before i lived 12y alone, sometimes a boyfriend but that's a problem with BPD.

I was very smart when i was younger, i worked a lot as a secretary, accountant, organizing events, booking fligths, hotels, etc... in a chemical firm, as a secretary for the vice president of France in Belgium (Alcatel), but then the sector of internet (cable viber) went down 2001, then i worked for a bank and other jobs, i worked from my 14y till 44y, also the free weekends, holidays, babysitting, volunteer work and going out, then i got so deep depressed I cannot work anymore.

I went back to the psychiatric clinic a few times but i will never heal from BPD, it wil get less with your age.

I have troubles to survive with myself, every day is a battle. 1 of my sisters killed herself 5 years ago, it runs in the family at my father's side (he died of cancer 25y ago) but 2 sisters also played suicide. I need to go to see a cooping psychologist but i don't go, i have difficulties leaving the house, to scared. 4 years ago i drove sober to a light and my car was perte-total. After 28 years with a car, now my freedom is gone too, i don't like the bus or train. I have a bike for small pieces.

And with corona help!

fabke

I believe in you @actipton80

Try to explain to your parents, otherwise ask someone experencied. And try to prove the chronic pain it's not easy to prove.

I live from my 42y old back to my mum. I'm now 50y, my mum is 83y.

I worked from my 14 till 44 years old. I can't work anymore, i'm scared of the dark, leave my home. Lost at 46y my car, drove 28y with it, so i lost my freedom. Now i have a bike for little pieces, hate bus, trains, tram now.

Lost a lot of friends with my asocial behaviour.

I still like to go to eat or drink with the friends i still have left, but it's already a long time closed of the corona.

My life is a struggle every day and it's getting worse. I liked to go out to dance and drink to much alcohol, that's already 11 months and 3 weeks ago.

actipton80

@fabke My parents are willing to help me. I'm hoping I can get a part time job this spring and work up to full time. I would need full time work to get medical insurance. I have Medicaid (government insurance for poor people) right now, but if I work, I might lose it. I also have an electric bike, but the back tire has a slow leak so as soon as the weather gets nicer, I need to take it to the bike shop to get a new tire put on it. The rear wheel is motorized so it's too complicated for me to learn how to do it myself. There is also a bus here, but I'd rather walk, ride my bike, or ride with a friend to places, because you have to wear masks on busses, uber, etc., and sensory issues make wearing one for longer than a few minutes difficult for me. I'm always pulling it down when no one is looking, and I refuse to wear one outdoors. Luckily, they haven't made us wear them outdoors here yet.

Nat09

Hi @actipton80 it’s very nice to meet you, warm welcome to our thread, you are among friends here 😊 I totally understand wanting to go to work, I wish I could go back, unfortunately it’s not possible, but thank goodness for candy crush 😂 You sound like an amazing person and never give up ☺️ I know you deal with a lot but you are strong, amazing 🤩 I don’t know where you’re from, do you have councelors to help in your journey to find a suitable job and help you when you move out on your own? I wish you all the best and remember to always look for something to make you smile and laugh in your day, there’s always something if you stop and look, Nat.😉😊🐰