Advice on coping strategies

[CalmBeforeStorm01]

I am a single mum of an adult daughter., we have no other family. Since she was a teenager, she has suffered from a dermatological condition that flares up and causes severe pain and discomfort. There is no cure, and very little understanding and knowledge of the condition in the medical profession worldwide.

She has been suffering from widespread flareups for around 18 months now and my heart breaks for the pain she experiences and the damage it is doing to her lovely skin.

There are no treatments for this condition, only experiments - try this, try that, see if it works. Also the NHS doesn't have any care plans in place for sufferers who are believed to be 1 in 10 of the population, most of them not reporting it to their doctor. This means every time she has a flare-up, and is screaming in pain, very little help is available apart from going to A & E. All they can do is offer strong painkillers and send her home until next time. The next time is usually the next day.

I do everything I can to support her and make her life as easy as possible but she is so rude and sarcastic to me. While I understand it is so difficult for her (and I would swap places with her in a heartbeat), I'm exhausted and at the end of my tether. I have a professional job that requires my focus and a child who also requires my focus and I feel torn in two. I can't afford not to work, or to take a job with less responsibility because to do so would be financially unviable.

Things came to a head as she went away for the weekend, after being in A & E the previous night and knowing she wasn't well enough to go. She messaged me in the night to say she was so ill, I went into mass panic as she was 3 hours away so I felt helpless. Yet, she refused to come home the next morning but told me I should call work and tell them I would need to take Monday off so I could take her back to the hospital. I told her I couldn't keep taking time off unless it was an emergency so she's now in a huff with me and isn't speaking to me.

I'm probably the one at fault here but right now I can't see it and I know I can always rely on Mumsnetters to tell it how it is.

If its 1 in 10 people, there will be more knowledge about it than you think - was that a typo, maybe 1 in 100/1000?
Either way, she's going through a lot as well as dealing with growing up, and it sounds like she may be emotionally manipulating you a tad. If all she gets in A&E is strong painkillers, why does your GP not give you a supply to have at home when required? Sounds like a waste of everyone's time and resources for you to have to take her to A&E for what is essentially temporary symptom control, then home. It doesn't seem like this is being managed very effectively which is having an impact on your life and hers.
At the very least, a lot of hospitals run pain management clinics for all sorts of conditions, so if its a painful condition she should as a minimum be under a pain team.

Opentooffers - Yes, 1/100 so a typo but still quite significant. Most people hide it out of embarrassment, or believing it's just one of those things, until they can't control it anymore. I never thought about asking for her to be referred to a pain clinic but I will bring it up with the specialist. The problem we have is that only a handful of specialist dermatologists even know what it is and those that do, they are so busy dealing with other conditions that it's hard to get support anywhere.

Her GP practice won't deal with it because they say it's too specialised and you can't just get an appointment with a dermatologist at the drop of a hat, even though they do get in touch when things are really bad.

We even had to seek out our own specialist, who is actually 200 miles away so that adds tremendous pressure when she is having a flare up.

I'm just having a moan because I will continue to do as much as I can but I also want her to realise that there are other considerations to take into account when making decisions about what to do next. Sitting in A & E on a hard chair for upwards of 8 hours while she's dealt with by people who can't really do anything for her anyway is really hard on us both.