Hello thanks in advance

westpest

hi everyone, I am finding all the Government talks about cutting welfare payments extremely worrying. Also bringing back assessments is also extremely worrying. I have stenosis of the spine, bone spurs on my hips impinging on my nerves. I have sleep apnea, diabetes, restless legs, nerve pain and osteoarthritis. Ultimately I am in permanent pain. I’m generally up all night, pacing about. I work with the chronic pain clinic and have done so for about 3/4 years. I also have non alcoholic cirrhosis of the liver. I am terrified of assessments as I find it hard to demonstrate the pain I am in. Oh I forgot to say I also have problems with my jaw keep locking. If things go wrong I cannot deal rationally and end up losing the plot. I know there are so many people a lot worse off than me but I cannot stop worrying about all this. I have all my letters etc from hospital appointments and results of tests etc but I still worry. My husband has Parkinson’s and I just find everything extremely overwhelming. I just don’t know who to speak to about my concerns. I have 45 years full national insurance paid but officially I can’t claim state pension until 2027. So I have 4 1/2 years to go. I am so lost, worried and extremely alone. I don’t want pity but somehow I need to gain some reassurance etc.

Albus_Scope

We all understand your concerns and are very much with you, I found the assessments pretty soul destroying. We're all here for support if you need us. But currently we cant give any concrete information. We're talking about what we do know here if you wanted to see what others have to say? It might help ease your mind a bit?

Have you spoken to your GP about how you're feeling? It sounds like you're in a tough place and could use a bit of support?

It might be worth giving Samaritans a call, so you can voice everything in a safe manner. I found they've really helped me in the past. They don't judge when I stumble over my words.

westpest

Hi Albus

thanks for your kind words. To be honest I’m not getting anywhere with the Doctors. The chronic pain clinic have said they know I am disabled and I shouldn’t be so hard on myself. There are x-rays and MRI results which show the issues. It’s taken three years to get the Doctor to agree to an x-ray after previously stating he would be laughed out of the hospital if he requested this. The results came back saying I have bone spurs on my hips and osteoarthritis. I do wonder if he had agreed to do the x-ray when I originally asked for whether my hips wouldn’t have been so bad. Going back to my original concerns, I have worked all my life and hate having to ask for a hand out (as some people call it). It is not done lightly and I feel dreadful asking for the help.

Albus_Scope

Claiming benefits that you've paid into all your life isn't a hand out at all @westpest, think of it as cashing out what you've paid in. 😊

westpest

Hey Albus

i know what you’re saying but I get so anxious and panic about having an assessment. We were made aware the other day that a chap we know was invited to attend a call to see what help he can get. Only once on the call is was a call to see how they could get him back into work either if it was part time of volunteering. The poor bloke was diagnosed with Parkinson’s over 12 years ago! Going back to me I had a letter from orthopaedics saying they agreed with the diagnosis of bone spurs and impingement but in the first instance they would suggest physio. I’ve been having physio off and on for at least three years. I have been in daily constant pain for over 4 years. I now feel they don’t believe the pain I am in and I am back to square one. I feel like they think I’m imagining all this. My hands and wrists are so extremely painful now. My jaw keeps locking and it feels sometimes that it’s come out of its socket. I have enlarged facet joints which are trapping nerves. I have a prolapsed disc in my neck. A bulging disc in my lumbar region and apparently I have stenosis. I also struggle with stress and anxiety as well and if some goes wrong I blow up and just lose it as I literally cannot cope. Oh and I have been diagnosed with fibromyalgia and I have widespread pain. I also have diabetes and I have a plantar fibroma on the bottom of my right foot. I don’t know how to ask this without sounding stupid but I struggle daily with pain but still feel guilty about not working. Before I finished working I had horrific stress and anxiety issues that two ohs Doctors both said I was unfit for work. However my employer insisted I do my full role and returned to full time hours. I was making dreadful mistakes constantly and the harder I tried to do things correctly, the more I did wrong. I have 45 years of full national insurance but I cannot claim state pension for another 4 years. I am constantly worried and anxious 😥

Holly_Scope

Hi @westpest. Gosh, that's a lot to manage. You should absolutely get some benefits support. You're entitled to it. It sounds like you've always been incredibly independent but like Albus mentioned, you've worked hard for 45 years, you have every right to support.

Is there somebody close to you that could help you navigate this, take a bit of the stress and pressure off? Also, are you receiving any support for the worry and anxiety you're feeling? It sounds like you're a lovely person who puts other peoples needs before your own. Please remember to be kind to yourself. 💛

westpest

hi Holly

thank you so much for your lovely response. Unfortunately there’s only me and my husband. My husband has Parkinson’s and dementia with Lewy bodies. He was diagnosed over 4 years ago. So I have no option but to try to do what I can. We don’t get any help so I get groceries delivered now and sometimes I have to have frozen meals because of being either exhausted or in too much pain. I’ve had various counselling and at the moment the chronic pain clinic are providing me with one to one support. I’ve been given various coping strategies but I just seem to forget what’s been recommended. I did get someone in to do a deep clean for a couple of days but at £20.00 per hour I can’t do this on a regular basis. Anything else we need I have to buy online or pay for the help. I found the letter from orthopaedics has upset me because I’ve had the pain for so long and yet they appear to be treating me like this is a new thing. I’m on quite a lot of medication and due potential serotonin syndrome (prevention) I am now having one of my tablets reduced. I constantly feel a huge sense of guilt for having to give up work. I also feel a failure. I have never had so claim anything previously and when I see comments from people that are still working, saying there are too many people on disabilities and they need to get off their backside. I automatically think this is directed at me. Then with what the government are trying to do regarding disability, again I am terrified they’ll think I am one If the people who making everything up. I know I shouldn’t moan as my husband has so much more to deal with. It such a shame seeing the one you love gradually disappear.

Holly_Scope

Bless you. It does sound like you can be hard on yourself. Please try not to let what others say, who don't understand and might perhaps be speaking out of ignorance, impact you.

Have you heard of an care assessment which is completed by the NHS to understand if there's any support that they're able to provide to you both? I've added a link to the website here - Getting a care needs assessment. Please take a look as it's a really helpful provision.

westpest

hi Holly

Thank you for your concern. Unfortunately my husband is very stubborn and will not agree to me contacting social services, this is even though I have explained I need some help. Having said that the link you sent is extremely helpful - thank you. Also thank you for taking the time to read my posts and to respond. It’s good to know there are people in the big wide world that do care