18 yr old daughter too scared to go outside

[gemlourose]

her gp believes that she is suffering with fibromyalgia. at the moment she is on crutches for arthritis in her left hip and struggles severely with constant pain and fatigue. she is now dizzy/lightheaded pretty much every time she stands up or if she is stood up too long, she has also become very clumsy and dropped a boiling mug of tea earlier and burnt herself. the problem we are facing is that she has completely isolated herself from the world because of this, she lost her job which she loved, she didn't have many friends to begin but they are now slowly slipping away as she distances herself from them because she hates people seeing how ill she really is. because of all this she has become too scared to leave the house, sometime I can manage to get her out to go food shopping but that is a very rare occurrence as whenever she stands up for more than a few minutes she gets dizzy again. I work full time so she is alone pretty much constantly so she feels even more lonely, and now she is scared of going outside ever due to her fear of fainting or collapsing in public, I just don't know what to do?? I don't really know what I’m asking here but any advice would be so appreciated

also forgot to ask! her birthday is on Monday and whilst she has been suffering with pain for nearly four years, this is the worst she has ever been, does anyone have any idea on how to make the day a bit better for her? she will probably spend most of the day In bed but I just want to make the day better for her

OP do you have a garden? If so, what about painting or drawing outside? Or planting some bulbs? Outside activities in a private space where she can stop any time might help. It's important to keep mobile with fibromyalgia

Poor girl ☹ no advice really sorry but must be awful to see your daughter going through that.

I suppose she'd be too embarrassed to be seen out in an electric wheelchair?

Poor thing, I had ME for my entire teens (still do but much improved) and it is so easy to hide away because of the pain and feeling embarrassed or different. I think you need to support her - being ill is scary and I understand not wanting to go out especially if fainting is a real problem she’s tackling. As far as her birthday - make her a nice breakfast, balloons in her room or just outside, new pjs or comfy clothes, a new dvd to watch or maybe some nice makeup if she is into that, something to make her feel nice?

You sound lovely btw OP and she’s lucky to have someone so caring xx

Can you invite her friends round so she doesn’t feel isolated and realises that her friends are her friends because of who she is and don’t care about her illness?

That if she lets them in then she’ll be giving the chance to understand rather than them thinking she’s just pushing them out?

Poor kid 😟

If her GP thinks she has fibromyalgia and she has to use crutches, she should qualify for PIP.
Yes it's a bastard to apply for but it sounds like she's entitled to it.
She could then use the money to pay for a carer to come in, or taxis to go out and see friends, whatever she wants.
Look into it with her.
She shouldn't be so isolated at such a young age, and if that will help, go for it.
I have a dc with a severe disability which they find quite isolating so I know how you feel. to you.

I’m going to state the obvious and ask if she’s on vitamin d supplements which I know helps some people massively

Make day special - ask her what she wants to do. Can you go for a drive somewhere - coast? You could park up and sit out by car and have fish and chips or something?

Re during the day normally - can you get someone to come in and do things with her like art therapy or music?

That sounds incredibly tough.

Is the GP aware of how bad things have become?

I don't know if any of this will help, there are probably others better qualified to help and who will hopefully post, but...

This is clearly having a substantial adverse affect on her daily activities. If it has lasted 12 months, or is expected to last that long, then legally she is disabled.

Does she receive PIP? If not, can you support her to apply for it? The disability centre near me runs sessions to help people prepare their applications - check if there is similar near you before you attempt it. There is also a website which currently escapes me that has really clear step by step guidance on how to prepare a claim and ensure you accurately portray the level of need. Have a google for PIP application guidance.

PIP could be used to pay for a support worker to accompany her when she goes out for example.

Might also be worth pursuing a social care assessment from the council to see if she qualifies for support that way.

Also, her mental health is clearly suffering - understandably so - and she might benefit from being referred to the community mental health team (CMHT) for assessment if she's reached a point of becoming socially isolated and too afraid to leave the house. This is far past IAPT (the counselling or CBT you refer yourself to, or that GPs suggest as a first line). That would also secure her additional support.

Mind have an info line you can call for advice on the mental health aspect of this. Details on their website.

Be aware, to help her get access to the care and support she clearly needs you are probably going to have to be more pushy than you're used to being. Putting on a positive front won't help as it just minimises things. You need to make sure professionals are receiving the brutal truth of how bad things are.

Before giving any vitamin supplements please consult your GP.

Many people don't realise that supplements and over the counter remedies can be very dangerous

Would she enjoy a massage? Either at a salon or at home?

thank you so much everyone, as for the electric wheelchair, she has thought about a wheelchair once but realised that she gets embarrassed even using crutches, she panics and thinks everyone is looking at her because she looks normal. unfortunately, the majority of her friends live away, two have moved far away to uni, one lives about 4 hours away and the other is on holiday and thats it really. her only friend that lives near us (currently on holiday) is also pregnant and she is so worried about losing her only friend that lives close even though they barely see each other. thank you so much for the ideas for her birthday, I am going to pop out tommorw and get a few bits to hopefully cheer her up

Re her birthday- what about a pyjama/onesie party with some champagne and DVD's and pizza etc.

If everyone is in pyjamas she won't feel so embarrassed about it, and she'll feel relaxed and less stressed

she is already on vitamin d supplements as it was incredibly low for her, understandable as she rarely gets out the house these days, her mental. health is awful, attempted suicde in august and I noticed self harm on her arms the other day so is clearly getting worse. after the suicide attempt she was in hospital and just told that it was a natural reaction to her pain!? so got absolutely no help at all

I would buy her the tackiest balloons I could find, maybe some nice fairy lights, and festoon her bedroom in them (making sure it's easy enough to take down if she decides she doesn't like them when you're not there to help, or it turns out they just tire her out more).

You don't say what kind of arthritis, but something like heat packs might be appreciated.

And for the long term, I'd try and encourage her to connect with other disabled young adults. It's a shitty time of life to be disabled, and knowing that it's not just you can make a hell of a difference. In my experience with a different disability, most people my age just didn't have the life experience to really know how to deal with it. It's as other-ing as being a young carer, or young mum.

Her gp should be able to refer for some counselling. This would give her an outlet and safe place where she will be able to talk about her hopes and fears.

Just seen your update. So definitely disabled under the law and entitled to all the support and protection it should bring.

For her birthday... If she's tired can you plan small 5-15 minute time slots of things she enjoys? And maybe a variety?

My gut feeling is to aim to bring her as many small moments of enjoyment as you can plan without overwhelming her or making her thinking about what she's lost. Just gentleness rather than trying to erase it all or pretend everything is fine when she knows it isn't.

I also thought after hitting post, if you do have a disability centre near you they could be really valuable in terms of resources and equipment and information and contacts. I'm pretty sure the one near me runs different support groups amongst its activities and advice sessions. If you haven't already it's definitely worth investigating if there is something like that for your area. It might be listed on the council website or be something you can find through Google.

Even if your daughter isn't able to go to a support group right now, there might be one for people in your position and that could help. Looking after yourself as well is important.

There might be online communities she could join to reduce her isolation. Mind run Elefriends, which is for mental health but it means it's moderated and kind.

Oh bless her.
I'd be more interested in being sure that her diagnosis is correct.
Sorry if you've said this further up the page, but was she diagnosed after multiple tests from a neurologist and a rheumatologist?

after the suicide attempt she was in hospital and just told that it was a natural reaction to her pain!? so got absolutely no help at all

FFS. This is the kind of thing I had in mind when I said you'll probably have to start being pushy and making a fuss. That's totally unacceptable and I'm so sorry it happened.

Trying to kill yourself, whilst potentially understandable, is not an acceptable level of pain to leave somebody in.

Anybody attending hospital due to a suicide attempt or self harm should receive a full psychosocial assessment, not just an "oh well, these things happen" shrug.

She is entitled to care and support for the mental health impact of her disability, not to be left to suffer.

Please push for her to be referred for a proper mental health assessment. If she's deteriorating this much, and with complex needs, she needs proper care. CMHTs exist to provide that care.

Anouk
the way she was treated after her attempt was disgusting, turned up at A&E at 6am in the morning after getting the bus herself, she didn't tell me where she was, then left on a bed until 10pm when they moved her to a ward, then woken up again at midnight to move her somewhere else, she was then kept there until 5pm the next day. she was given no food or any help to try and keep the pain under control while she was there, in fact they gave her no medication at all so she was In even more pain than normal, I’m just scared she will attempt again as she is even worse now

As someone whose been laid up for long periods of time the key for me has always been to focus on what I can do not what I can’t. She needs to focus on things she can do while sat/laying down. So painting, crafts, caring for small pets, reading, creative writing, blogs, social media etc. Get her to engage online with positive people in the same situation. If she’s never been particularly arty/crafty pick her up some tester craft kits. The tiny mouseloft (I think that’s the name) cross stitch kits are good. About £2 and will keep her busy for an afternoon and if she likes it she can go bigger/design her own.

the diagnosis was given by a gp, was never referred to anyone else. she is under an orthopaedic consultant for her hip currently but he is absolutely useless and doesn't really care

Poor both of you!
Pain is the pits and it impacts on all of you!

Others have suggested some nice ideas... What about Lounge floor picnic with luxury nice bits to eat? ... Fairy lights... Would she tolerate a cinema trip... If not something now she fancies but would like but something to look forward to.? Something she could look froward to?

Re mental health... It does sound that she is really really suffering... Unsurprising really....

Please ask the GP refer her to a nhs pain clinic that runs pain management courses... Usually these are good and are for people like your daughter that have complex pain and mental health difficulties as a result of their pain. The there are a variety of professionals involved... Physios, medics, psychologists, nurses... All of whom are specialists in pain.

Do tell the GP about her suicidal attempt if you haven't already. Further I would phrase it as--could she be expedited s her mental health is suffering so much. As she has already made one suicide attempt... And ask what can be done while she is waiting for pain management assessment/s.

These are group sessions run over several weeks.. I don't know where you are in the country but Bath is a centre of excellence nd many other cities /towns have nhs programmes. The Liverpool programme I've heard good things about. I it's not about 'curing' but but learning to manage it more effectively... With this management often the perception of the pain lessens.

I would hope that if she was waiting to be seen it may give her some hope. The there are many people out there with very similar difficulties. All I can say.. It will get better! (I had ME for years... And am now functioning much better... The key to all of this was getting help with stress I was feeling as a result of the ME)

Would really recommend this book - it Owen is a psychologist... He writes with compassion and understandung and has lots of exercises (psychological more than physical) that Im sure will prove some use.

Ray Owen: living with the enemy

I'm so sorry to hear about your worries and your daughter. It sounds like an awful situation. I agree with others, that you may have to start being more pushy/bolshie to get some much-needed hep. Could you get another opinion on her illness, from a different GP? Or could you at least alert her GP to how difficult things are at home? They may be able to refer you to some help.
This website might offer some ideas/help: www.scope.org.uk/support/disabled-people/young-disabled
I am sure there are others. It's not good for her to be alone so much during the day while you're at work (not your fault, of course). Is there some kind of befriending service you could access, locally? Would a pet - a cat, for example - help to provide some company?
I hope things improve.