I just don’t know where to turn for support. I have basically left the house about 15 times in the last year due to my herniated disc , various spinal degeneration rubbish, I have lupus, fibromyalgia, and various other autoimmune diseases that I can’t spell 🤣. I am waiting for the 2nd full assessment for Autism aswell. and I have only managed my mental health all 48 years of my life by exercising and being out in nature.
My mental health has taken such a dip as I can’t get out. My husband has given up his full time job to help me more, and he is trying to run a new handyman business but this isn’t making enough money to pay bills and it’s theee months of mortgage arrears and other bills. We get UC and PIP (half the amount). But we are still struggling. This sounds awful but all I can think of is getting out the house each day. I have crutches but this is still limited on one day a week going out. As it affects me too much walking. I have seen a secondhand Ice Trike which I have tried and tested and they are for people with disabilities. It is going to cost £1000 but I have no way of saving this money when I can’t pay bills. I am so desperate to improve my life as I cannot go on another year like I have. I have the mental health team tomorrow as I am really struggling to see point in my life right now if it is going to be like this!!!
Does anyone know if there are any grants available or any other support I can get. I was an OT and I know that the social won’t help me as they would just provide a wheelchair and I am not doing that.
I am sorry if my message is low and blunt but I really struggle to communicate. I read all your messages and there are so many days I sit here wanting to talk…..moan…..but I feel like I can’t do this as it just feels like self pity when it comes from me. But when I read all your messages it makes it real, and I know I am not alone.
thank you all.
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M0wnt
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Hello you can have a good moan and let out feelings ,we need too do this sometimes, a helpful reply from Ajay575,I quite understand your post and with the cold weather upon us can make it difficult too want too get out more ,I do know want too hibernate sometimes☹️it does help too chat here ,it does help me when I read other members posts in our very big unwanted Fibro club,your right you do not feel so alone ,I can’t wait for Spring xx
the Wren Project for autoimmune conditions are fantastic a self referral system you get 6 sessions of 40mins over 12 weeks and you. Can rant cry laugh and talk about what’s getting to you.
Hi again, I just googled them and they look really good. I think I will self refer tomorrow, take the chance as seems just what I need. Thanks for that. X Mo
My husband said to me after one of the last sessions when you come off the phone you are happier compared to when you started and came out crying and very snotty!
As an occupational therapist, we're there no avenues available to your patients for adaptations/ grants for equipment? Having given support to others, I would hope you could receive the same. xx
Not in the sector I worked in. Most of the health and social equipment is literally basic needs such as wheelchairs, hoists etc….i don’t need adaptations. It is to help you meet your basic needs such as to eat, bath, dress and toilet.
So unfortunately I don’t meet the criteria from what I am aware. It’s also hard for me to discuss it with them because i worked within that team so i know them all. 😕 I know my anxiety just won’t cope with that right now.
The mental health team today said they would see what was available for me, so fingers crossed I get support through them.
Everyone has such tight budgets and it’s only getting harder for health and social care unfortunately.
Awwww I get it pet. It would be hard to discuss with former colleagues. I bet they'd want to help though, if they could. But I get the anxiety too. It all sucks doesn't it 😏. I hope you get the help you need and deserve.
Hi, thanks for that link as I have found a sports grant for disabilities. So I am in the process of applying for it. I have spoken to my therapist who is going to write a supporting letter. I have some hope back again. Thank you all for your support. Mo x
I feel for you. I’m not sure what is all available in the UK for I am in the US. Physical pain takes a toll on your emotional and Spiritual health. I am sorry that you are suffering from all the spinal issues, autoimmune, fibromyalgia etc. I have been struggling with spinal issues in my back/neck for 7months now. I got to a dark place and I finally had to reach out for help in coping with the PAIN and still seeing ologists in trying to put all the pieces of the puzzle together. So I feel your pain. I prayed for you. I hope that some one there is able to connect you with resources to help you out. ❤️🩹🙏🏼💖
I'm sorry to here this , would you be able to set up a (go funded me page) at all some people are very kind. Or would there be an opction where they could let you pay monthly at all. I hope this can help.
After reading your post I totally understand how you must be feeling and want to say don't panic help is out there. You would benefit on talking to the debt charity who will go through all your bills and talk to any creditors about easy plan payments until things improve for you and the family. They can stop interest on outstanding amounts to stop more debt rasing. They will put you in touch with the right people to look at your concerns. Look on the net and see what other benefits you can apply for to talk to the benefits team and ask for there help.
Speak to your GP tell him your illness is becoming worse due to stress in your home life they might change your drugs to support you through this difficult situation.
It never nice sharing your very private life with others however there are many people out there having the same issues.
Gas and electricity have grants for low income or hardships payments towards customers bills . I know its hard but sit down and take control of this horrible situation.
You will get support there many charity
out there who will help .
When you are feeling poorly it's hard to focus on such worries. Take hold of these issues and you will feel better. Hang on in there and kick back at you deserve better . I found this below take a look and see hoe they can help. Keep strong 💪 and good luck 👍 don't give up. Well done for asking for help your a very brave lady. X
. By inputting your monthly income, expenses (rent/mortgage, utilities bills, food, subscriptions, etc) and how much you owe, it will identify a debt solution that suits your circumstances. They provide free, confidential debt advice 24/7 online and from 8am to 8pm, Monday to Friday, and 8am to 4pm on Saturdays, by telephone. Call them on 0800 1381111
Thank you. We have been with step change the last 5 years and have been paying into an IVA. Things change though and for the worse and the UC does not cover the bills let alone anything else. It’s just tough times for all at the moment. We had the heating grant and got new solar panels, and they updated our coal fire and boiler but now we have no ceiling in our bedroom as it had to come down to put in the boiler etc. so it’s all been helpful but my house is like the house that Jack built as no money to fix the ceiling etc.
I'm sorry your going through this, I do exactly the same,
I can't stop it either, The only time I have left my room in the last 3 or so years is appointments, Hospital,Dentist ,doctors and therapist I take anything up to 3 diazepam to get me out, I keep telling myself it's okay to do this (It most certainly is not)
The last time I sat on my recliner seat someone walked past, (I have net curtains up so no one can see me) I went into some sort of freak out mode,Hubby wants to shut the curtains, But I want to see day light, ( No winning situation) The last time also downstairs, someone knocked on door, I hid under the stairs! What the chuff??
When Hubby goes out, He leaves a note in the door for deliveries, Asking then not to bang and leave in usual place,
Half the time I don't know what month we're in, (really crappy time) I know it must be winter when I have an extra blanket on the bed and the heating comes on, I ask the same old questions, What's the month? What day is it? etc,etc, If Hubby is not back from shopping after 2 hrs I start to worry, I have all these thoughts about he must have had an accident or something! When he gets back he says sorry he took longer than expected, We should be out together, Taking the dogs out into the countryside,As long as there's suitable tracks for my chair,
One can dream,
I've still not used my bus pass, (enhanced pip to thank for that one)
The thing that really scares me is the percentage of people who take their own lives suffering with Fibro, (when the depression takes over, (So sad)
My Hubby was an anestatist ( sorry can't spell) in some of the hospitals in Liverpool back in the 70's and 80's and he still won't help me to hibernate! I only need it between Oct-Apr, ooh I've just sorted how I can lose weight😀
(Joking aside) We all need to find our level to get through the day and there is no shame in asking for help (We didn't ask for this)
You'll find lots of people on here that will answer back to you (and others) and find friendship via chatting ) I really miss having a pen pal with proper pen and paper, getting a letter through the post (sigh) Ironic how I have a melt down if I need to use the phone, Hubby does all that as well,
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No support 😥
Feeling really crap physically and mentally,in need of some support :(
help been turned down on appeal to get into support group
Struggling with fibro fatigue -no support 
Support Group Staffordshire
