Kennyjack, as far as I am concerned we are all entitled to have a fit and fall in it, just don't stay there for long. I agree with you as far as unseen disabilities. That makes it a lot harder. I have RSD and there are days I am good and others not so good. I am good at concealing it to others, not hard when you only go out when you feel like you can. Even hard for my parents to understand, I don't believe they get it either. My husband and 15 yr old son are great. Although my son sometimes has a hard time with it, who can blame him, there are days I have a hard time also. Let me be honest, there are days I have a fit and fall in it but eventually I pick myself up, dust myself off and move on...well, until the next time. LOL We are just reacting normally to our stressful lives and lets face it, it is hard to not have someone fully understand how we feel. It leads us to feel disconnected, like we are on the outside looking in. We are our own worst critics, we sure don't need it from friends, relatives, or strangers. We are all doing the best we can and I'd like to see how they would handle it if the shoe was on the other foot. Our life is hard enough without the so called "help" some want to give us. But I consider myself a "can do' type of person and I have no trouble spotting stupidity or ignorance, if someone continually brings me down I just move on. Life is too short to surround ourselves with people who make us feel bad, there are others who make our heart smile. Ignorance is forgiveable but stupidity is another thing. My favorite saying is "Lord, save me from stupid". Keep praying, have faith and don't be so hard on yourself. Like my grandma always told me, "Life is good, if you don't let it wear you down". May the Lord save you from stuipd also. Lol Marilyn

its the lack of frustration cause i understand cause my mum has been
disabled for about 14 or 15years now.

Hi, everybody:

I am a disabled single mother with an adopted two-year-old baby boy. I have a police officer boyfriend, but he is still in the U.S. and he is trying to come to French Polynesia so the three of us can live together, love and support each other, and just be happy together.

My main disabilities are generalized internal chronic RSD, hypothyroiditis, epilepsy, and asthma. To me, there are five hardest parts to being disabled and to being a parent:

1) It breaks my heart sooo much to see my two-year-old baby boy suffering physically and emotionally from such a horrible disability as Cystic Fibrosis. He almost died so many times I lost count. Fortunately, I was able to get him a transplant of one heart, two lungs, and two kidneys. I was told by the surgeons who operated on him that it was very rare for someone his age to get the transplants on time, that is, before his disability takes him to a better world.

2) I cannot always do all the activities I would want to do with my little treasure, whether it is because of his transplants or because of my own disabilities.

3) I do not always know how to reassure my baby when he sees me suffering physically and emotionally so much because of my disabilities, especially my generalized internal chronic RSD and hypothyroiditis. Epilepsy and asthma are not so hard on me.

4) I and my son feel rejected by some non-disabled parents and their kids, as if I and my son were going to contaminate them, even though none of our disabilities are contagious.

5) I have to live, 24 hours a day and 365 days a year, in fear that CPS will come and steal my child.

Another thing that is bad, is having a (ex)spouse who treats us like a leper or something not worth helping. I had a seizure in bed one morning. I had already told my (ex)wife what to expect and do if I had seizure. All she did was sit and stare. She didn't help me at all!!!!! A year after she left me, she told me that she had wished my disabilities would "just go away". It was then, that I decided to divorce her instead of trying to reconcile.

On top of that, four years after I divorced her, she finally admitted she was disabled, which I had known for more than ten years. When I had tried to get a psychological evaluation done on her prior to the separation, she refused. Not to see if she was crazy or anything like that. But to get a further understanding of why she behaved the way she did. When I divorced her, my parents, step-mother, her mother and maternal grandparents were there. Right after it was finalized, my (ex)wife started running around to every family member present, individually, crying like a baby. It was behavior like that, that I had to deal with for four years(before the separation). She was in denial about my health problems, and her own!!!!

HI I am a single mom and have had RSD since 1997. I have whole body RSD so it is hard for me some times to type and write ..I have 3 children I have raised my son is 23 and my other son is 19 I have a daughter who is 16. she is a great deal of help to me. there are days I cant get out of bed. I was in a wheel chair for 2 years and worked hard to get out. but now have a broken scs and trying to find new pain dr cause I have moved ... so I am with out pain medication also ... I am in a lot of pain but .. as far as spending time with my children they help me and come to me to talk, because we were close when they were growing up and still are.. just take one day at a time and he will see how much you love him and wont be such as rascal all the time

I wish on the feel good days, that they would be every day. I have two daughters, ages 5 and 8. I feel horrible that I cannot do everything that I attempt with them. My husband has two sons from a recent marriage, ages 9 and 7. They all have each other to play with but there are days I want to jump on the trampoline, bike ride, and so on. I am able to do those things few and far between

Hardest part of being disabled. Finally realizing that I may never "get better"... Losing the use of my "good" leg for crutching from spinal damage, and that I need to fight for a specialized wheelchair so I don't end up living life in bed.

People see nothing obvious from the outside, they have no idea what's going on inside. Doctors that ignore obvious signs and symptoms and give poor treatment. Fighting for good medical care is exhausting sometimes.

By comparison, there is no hard part of being a parent. The level of "hard" is much easier for me. Sure, it's tough to tell your kid you can't fully participate physically, and that you can't always be at the events. But there are so many other opportunities that make up for it, like my kid knows that he can always find me for a cuddle, to read a book, play Legos/magformers, pillow huts, or anything else you can imagine doing on a flat surface. Plus I am raising a kid with amazing compassion for others.

For me it was not noticing my daughters mental health going down hill.
I too have hidden disability from spinal injuries and a brain injury from a car accident.
Age 8 she became carer. Over the next 8 years I gradually regained function, as I got better she got worse.
She was losing her identity she felt. She was scared to let go of that mothering role.
I didn't notice she was cutting herself. It took a long time in therapy to help her through. She was diagnosed with PTSD. I caused that and I felt rotten.
She is happy and intelligent and in 2 nod year at uni studying forensic bio Physcology.
The plus point was being here for my 3 children. Being able to spend time with them, as long as I was not fatigued.
My children have missed out on sleepovers, parties, concerts even trips that I forgot to fill paperwork in for, or pay for!
Poor memory plus poor executive control makes me a bit of a loose cannon. I can be embarrassing without realising. I don't have the filter to stop what you think falling out of your mouth, it can get me in bother and cost me friendships.
I wish I had found this place years ago!