TornadoCreator

The biggest worry for me is behaviour. I'm used to pain and there's little anyone can do for me there, but my behaviour and mood changes wildly. I have family and friends who are in care professions and I've heard horror stories about difficult residents. My biggest worry is that I'll become one. My mood is unpredictable and I'm very aware that I can and do take my pain out on others, as much as I try not to.

The biggest tip I can give is just remember it's not personal. I'm almost always angry and in constant pain. Occasionally I'll shout and swear at people even while they help me, or I'll focus on something insignificant and get extremely angry/upset over it; projecting my pain onto it. Often I'll then become overcome with guilt/embarrasment especially if I was rude/unreasonable with someone. Sometimes this will cause me to spiral into self pity and/or break down. Often the extreme emotions and/or crying will then trigger a migraine which makes everything worse... as you can see it's a spiral of self-destruction; and even though I'm aware of it I still find I can't control myself.

Having friends and people around me who don't take it personally when I get het up, who listen calmly even when I'm spouting rubbish, and make a point of noticing and telling me how they appreciate it when they can tell I'm in a lot of pain but trying to rise above it. That helps more than any physical help and it makes it easier for me to cope. I think emotional needs are probably more important than physical much of the time.

I have a couple of linked questions and I hope that you can answer.

Does it bother you when Westerners, given the opportunity to ask you questions, jump at the chance to ask you things that you clearly have no control over; such as political questions, where they are clearly judging you for what they consider the unjust laws and practices of your country and/or religion?

How do you feel knowing your country is, internationally, considered to be one of the most oppressive countries in the world due to it's treatment of women, homosexuals, and non-muslims?

Knowing how your laws are currently, what is your relationship with your mother like? Legally, she has less rights than you do, and is considered by your laws to be less important than you, something most westerners would consider offensive as most western countries have traditions where it is expected that parents are treated with respect and honoured.

Thanks for giving me the chance to ask, and I hope the responses you get are not too harsh.

Wow, that was quite a post. Thank you for being so open. As for your questions I'll answer as best I can.

1. It does help. While I'd not wish this kind of pain on anyone, I do like having people out there who understand. Some things are impossible to relate to without having been there.

2. A cure is not possible. I've studied biology, there's no way to fix me. Any cure for this condition would be genetic engineering to prevent the condition before birth. All I can hope for is better ways to handle symptoms. As for dreams... I have many. I'd love to have children, though meeting a woman who'd be interested is more than a challenge. Part of me still wonders if I could write a book, or program a video game. Something I could do from my own bedroom. Leave a mark. Honestly though, I try not to look to the future too much. While I've been told I have "maybe 10 years left", my heart could give out at literally any time. The future is a luxury not worth considering.

3. I'm honestly not sure. My condition has molded who I am, it's hard to say what I'd be doing without it. I was studying Chemistry and Forensic Biology. I'd possibly be working for a crime lab doing blood analysis. I was quite interested in that back in the day. I could also be doing computer programming or game design as I've always been a passionate gamer and I already know a few programming languages (Java, Python, PHP).

4. My family care for me, thankfully. They go well above and beyond what most would. They cook, clean, and drive for me; and as my benefits isn't enough they cover a chunk of my bills too. They also help with little things, monitoring my meds, going with me to appointments. I'm well looked after thankfully.

5. I've come close to attempting suicide, a friend intervened. It's a consideration I still keep in mind. I've been in some very dark places and sometimes the pain and the loneliness gets too much. Most close friends/family know I'm planning suicide. I know some day I'll lose full motor control, vision, and be unable to wipe my own arse, feed myself, or use a computer. When that happens I lose my dignity, and my link to the world. With a computer I can communicate, educate myself, keep up to date on world affairs, watch movies, play games... it keeps me going. I will do it eventually; if only because the thought of being in agony; bored, lonely, and unable to do anything about it. That terrifies me. I'm just hoping my heart gives out first. I know that's not a brave answer, but it's the truth.

I still believe every life is precious and meaningful, but sometimes the pain is too much; still I'd hate to hurt anyone by doing that.

I fear this is getting very morbid.

Thank you for answering. You seem like a reasonable person and I wish I could share your view of your country but I simply cannot. I have a follow up question if that's Ok, but I should explain a little first.

Due to my sexuality, and being an atheist, I would not be allowed to even visit Saudi Arabia. I would be arrested as soon as I entered the country. I find this a massive shame. In my country Islam is currently viewed as a bad thing and I think the segregation we have as nations makes it worse, people only hear the bad side of Islam here... people with bombs and planes killing innocent people, and it scares them. I'm sure the average Saudi person is nothing like that, and that they are nice normal people.

I'm sure there's much that can be learned for both cultures, I have a lot of respect for the Arabian culture; after all 1000 years of science would have been lost due to the Dark Age if it wasn't for it's preservation in Saladin's kingdom. I find it a shame though that we can't, as countries respect our differences but then I admit there are some changes I would have to insist on for me to be entirely happy with Saudi Arabia; and this brings me on to my follow on question.

What changes do you personally want to see in Western countries that you feel would make the world better? I'm in the UK. I don't know how much you know about the UK. Also, below I have listed some things I would need to see change in Saudi Arabia for me to be happy with it, how many would you be OK with personally and if not, can you explain why?

1. I would need to see changes to civil rights for women. Women need to be free and equal, They should be allowed to have jobs, drive cars, dress as they please etc. because it is not our place as men to "protect them from sex" by treating them like slaves, we can "protect them from sex" by not having sex with them against their will. That's rape. We're men, not animals; are we really so pathetic that seeing a womans skin would make us lose control. Clearly not. I have friends and family who are female and I could not condone a place that disrespects the people I love by claiming they're less of a person than a man. Know that I don't blame you for this, it's your government not you who passed such laws.

2. There would need to be freedom of religion. If Allah is truly divine, where better to discover that divinity than in Mecca? I'll never see that though, because I'm not Muslim. Surely Allah is not insecure, needing people to force his words on people. Becides, Christians, Muslims and Jews are very similar, after all. The Torah and The Bible are both holy books of Islam, so a Jew or Christian may simply be a Muslim who's yet to finish all of the texts. The Koran is the most cohesive and easiest holy book to understand too, so if Islam is true, it will surely prosper by welcoming those from outside it's faith; and even if not, so long as you have faith all is fine. After all, faith that is forced on someone is fake faith, and Allah will know the difference.

3. There would need to be freedom for gay people. I understand that such a thing is against the laws set out by the Koran depending on interpretation, but even in Saudi Arabia itself true Sharia Law is not practiced, and not by all people. If indeed it is against Allah, won't judgement come from Allah anyway? If I was in Saudi Arabia now, I would face severe punishment; even death for my past. I have dated both men and women, I see no difference and find it disgusting that any country would tell me who I'm allowed to love.

These three things are my biggest problems with Saudi Arabi, and they are of massive importance. They are important enough that a large percentage of my country wants to refuse to conduct trade with a country that by our standards violates human rights.

I realise politics is something you want to avoid but I hope you can understand why it is so important to those of us outside Saudi Arabia. I would be afraid of Arabian culture as it is now, because it would have me and most of my friends and family imprisoned or killed for doing nothing wrong. Until that danger goes away, I cannot ever see Saudi Arabia as a good thing; which is a pity as I know it's a great country with a rich history.

I hope when you grow up, and your generation grows up, you'll be part of the generation that changes Saudi law. I don't want to see your country change it's customs, traditions, ideals, or beliefs. Even if you believe it's wrong to be gay for example, that's OK... just so long as you let me make that mistake.

I know this was a long response, thank you for reading.

I'd rather have indifference. Pity just feels insulting. That said, genuine sympathy or concern is nice; people can be compassionate without being condescending and when they are it's very much appreciated.