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We want to hear from you: please tell us about your experience of the online community.

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.

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Comments

Albus_Alumni

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_Alumni

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_Alumni

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_Alumni

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

westpest

struggling

Today I thought I was okay but now I feel dreadful. I was rushed into hospital last week as I had severe chest pains. This has happened before and having had a CT Angiogram I knew it wasn’t my heart. The pain stopped for about an hour then came back at the very top of my stomach. To cut a long story short it was found I had gastritis flare up. Since then I have felt odd. I feel completely washed out and am having horrendous hot sweaty flushes but I’ve passed the menopause some time ago. I feel dreadful as it’s hard to continue caring for my husband. When it came to cooking dinner this evening I just felt I didn’t have the energy to do it. I have also had a lot of hot flushes today and each time my hair is soaked with sweat. Then all of a sudden I feel like I’ve wasted my life. I have only ever been to France. I feel like I have missed out of so much. I see people enjoying life and it just makes me feel miserable. Now I have no hope of being able to travel or do anything enjoyable. This is partly due to my disability and mainly due to my husbands. I have no one to help me and literally have to do everything myself. I am terrified of my husbands Parkinson’s disease and dementia with Lewy bodies deteriorating as I don’t feel I’ll cope. I feel like I live in a tiny bubble now and there’s no way out. I’m having some counselling to try to help me but it only helps when I’m on the call. Other than that there is no one else to talk to, I can’t go out for more than an hour or so. We have the opportunity to have a mini break but now I’m worried about making sure we’ll have enough medication. Then I need to think about packing, I have also realise the apartment is not set up for anyone with a disability. It’s also a first floor property with no lift etc. I’m so confused as to whether it would just be easier to stay at home as there is no one to help me and to top it off I would have to drive for over 200 miles. I know there are people worse off than me and I’m sorry I am such a pain.

westpest

Hi Bluebell thank you for your kind words. Fortunately today has been a better day. I had a meeting with befriender and they have agreed for a befriender to come out each week for an hour in order for me to spend time with them just chatting or meeting up for a coffee. The chap that came to see me had exactly the same lower back issues as myself. He also had exactly the same mental health issues so understood me perfectly. Then to top it all his father had the same Parkinson’s disease and dementia with Lewy bodies. You couldn’t make it up and it was a massive help him being able to understand how my anxiety prevents me from doing some things as I panic. He won’t be the person I see on a weekly basis but he won’t mind me calling him should I need to. I am currently receiving counselling by the chronic pain clinic and they’ve explained how because I am in so much pain that it’s affecting my mood as it’s just too much to cope with. I have spoken to my husband about asking for some help but he just says if I want to go out for a couple of hours then he’ll be okay. He’s agreed for me to pay someone to help me with housework, mind you it’s £20.00 per hour. Lol I wonder if they can do the whole house in an hour? Then the other bit of good news is connecting carers have found us a weeks break at the end of September. It’s about a 3 hour drive for me. Initially I was excited but I’m a little worried because it’s an upstairs apartment and I don’t see anything about whether there are and grab handles in the shower etc but as someone else says go and try it and you know if you don’t like it then you just come home. So I feel a lot better. I admit I’m still worried but know there are people like yourself that will help me by chatting and making really good suggestions. I cannot thank you enough xx

Holly_Alumni

Hi @westpest Honestly, I'm so pleased you've had that visit. I can't believe how much you have in common and I'm glad you can keep in touch. It's a shame they won't be the person visiting regularly but it's so good that you have someone coming to help with the housework ☺️

It's great that you're able to get out as well. Have you had any thoughts about what you might do with that time? Take up a new hobby???

And I hope you do go for that break. It might be nice, a change of scenery. 😊

westpest

hi Holly

sorry I’ve been trying to reply for the last couple of days but either the phone goes or my husband needs something. Today currently is a good day. Firstly the weather outside is good and secondly I feel more positive. I hope others are also okay? This site is a huge help to me, in either being able to say what I’m thinking or doing a few of the games. It also helps to see how other people are coping and being able to share ideas. It gives a connection to the outside world. You mentioned maybe starting a new hobby. Well I like using my sewing machine but can never think what to make. Also I’m not very patient so I have a tendency to rush things. For example last month I tried to make a fabric bunny, I was doing well until I turned it inside out. My poor bunny didn’t have long bunny ears, but long bunny boobs! Oh well better luck next time.

Albus_Alumni

Really glad to hear things are feeling better now @westpest 😁

I know it sounds silly, but maybe get an adult colouring in book? I find them very relaxing to do, once you've trained your brain that it's totally alright to go over the lines and that things can be whatever colour you want. 😆

Or if you're into sewing, maybe crochet? Once you get into that rhythm it's actually very relaxing.