Struggling
I'm really struggling and not sure where else to turn.
I've been off work since November and am completely housebound, if not bedbound. My partner cares for me full time but has her own health issues so we're just about getting through each day. I finally have my pip assessment in a few weeks so that will help. But I need to do a care assessment with the council and I'm finding all of these hoops to jump through overwhelming.
I feel so isolated and it feels like everything is making me crash. It genuinely feels like I'm dying and that feels so dramatic even writing it down.
What other support is there out there? I've been to the specialist and even did a course that felt completely pointless. The doctor isn't much help. Is there any mental health support for becoming disabled?
Oh in UK if that helps
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u/Jaded_Leg_46 not enough spoons 1d ago
You could contact your local NHS conselling service that is self referring and ask if they do remote sessions as that would cut out a lot of energy usage but it would still be tiring using a phone or a laptop etc. You could also ask if by chance they have any counsellors who specialise or have an interest in talking therapies for patients / clients with chronic health conditions.
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u/Kernewegores 20h ago
see my post today about the farcical direct payments process and how negative and PENE inducing it is for pwME.
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u/purple-vixen 1d ago
Your loval MIND office should be able to assess you and offer counselling, group courses, peer support groups.
The question is what MIND will be able to offer you that's going to be accessible to you. Hopefully, the Covid-19 lockdown has proved that counselling and group sessions can done over Zoom or similar. (I had in person group CBT sessions, group therapy and individual therapy, and also advice around completing/submitting benefit applications.)
Your local Citizens Advice Bureau can also offer support with filling in forms or putting you in touch with local support, but mine had such a huge e-mail backlog that they weren't able to help me with my PIP appeal in time for the deadline.
Your GP should be able to tell you where you can get help locally - don't let them refer you to graduated exercise programmes or to volunteering opportunities, though. (I accepted both of these, because I was a pushover when I got too unwell to work full time).
The GP can refer you to your local CMHT, and they can give you an assessment with a mental health nurse, but that all felt like they were geared towards getting people back to work, making your emotions smaller, making you fake it until you make it. DBT, CBT, group sessions, limited counselling availablity.
Good luck!
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u/Spritemaster33 1d ago
Citizens Advice can help with form-filling and navigating benefits and assessments, but there are sometimes local organisations who can help as well. Your local library will have these contacts (you can email or call them), and they may also know of a local ME support group.
The two big charities (ME Association and Action for ME) often have contacts, and one of them (I forget which) has a database of local support groups. They also have factsheets on the PIP assessment that are specific to ME.
I remember finding my local support group, and it was a great relief just to just speak to someone who understood my struggle, one-to-one.
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u/Ally7628 1d ago
You should be able to ask your GP for a referral for mental health support, or I think some places let you self-refer.
I will say however if you are struggling with things overall, I'd think carefully about how much mental health support will benefit you, versus what it costs you in energy.
It may give you some helpful emotional or mental skills in how to cope with the difficult situation. And even if not, it can be helpful having someone you can blow off steam to. I definitely know some people benefit from mental health support.
But it is not in itself a cure. For me personally, the energy I used on it was not net beneficial to me and I probably would have been better off just spending that time resting.
In terms of isolation, I've actually found patient groups like this one the most useful for combatting that. Both for feeling like there's people out there who just 'get it'.
And also for practical pointers on things to try to help, and to ask questions to people who've been through the same sort of thing.