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Newquay profile image
16 Replies

Hiya guy well I told you I sent my form back last week.

Well today I got a letter to say they have passed it on to ATOS and they will be in touch but they are running behind so it might be over 16 weeks before I Evan hear from them,

Hum well not happy I don't think they relise that fibromayia feeds more from stress, so now I have to endure all this time with extra stress yes just what I needed,not,

I don't sleep well at best off times but now it's Evan worse.

I had to go to doctors today I really don't get it , I have lost over 3 stone that's 42 pounds now at perfect weight but my colestrol had gone up.

She said I should take stating . Well I said no I take enough not taking any more and I real don't care just now. That I am to tired to be bothered at all.

I ask my self is it really worth it,

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Newquay profile image
Newquay
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16 Replies
mattoid-mags profile image
mattoid-mags

Hi Newquay, I know it's hard, it's a long and stressful process in regards to benefits but please don't give up. Have a chat with someone you love and trust. Tell them how you feel and try to get as much support as you can. Keep posting here as everyone here are very supportive and caring. Vent all you want, get it off your chest but be kind to yourself and do what normally do to relax, chill out and de-stress. The less stressed you are, the better your fibro symptoms will be- hopefully. Soft hugs x

Newquay profile image
Newquay in reply to mattoid-mags

Ho thank you for your kind words I have a lovely husband who is very supportive but he,s got CFS, he has just lost his job because he was HGV driver and if you have firmly been diagnosed he,s not aloud to drive HGV by law. It,s so frustrating it's only just over 12 months since I filled these stupid forms in but that was DWP not pip so what I think. Just because they have changed the name,

Any way I have a hoilday booked for early September and I have told them that they can come to me if they want to see me. I have had big operations one in March and one in April an emergency and I have another to look falward to in October, think all this then this on top has just worn my body out. Hum.

I have loss of bowel control some times not always but if I am stressed I panic and well guess what happens,

Thank you anyway but I am just so tired maybe if I get some sleep

mattoid-mags profile image
mattoid-mags in reply to Newquay

That's a lot to cope with, just know that you are not alone and good to know you have a lovely husband, and although he has his health issues, I'm sure he is a great support to you if not physically, but mentally. Stay positive and just take one day at a time. Keep us posted and enjoy your holiday xx

rosewine profile image
rosewine

Enjoy your holiday and try to put all thoughts of the assessment to one side just take every day as it comes as you ahve already had so much to contend with you don;t want any more stress. It is such a shame about your husband I know my husband lost his license for 3 years when he was diagnosed with Epilepsy and they could not immediately control it with tablets. He had a 4 hour commute every day and at the end he was just worn out. We are both not well but try and support one another but I know somedays it is literally the blind leading the blind but we somehow get by.

I often wonder about taking statins as I had to try 4 different sorts before I got one that my body could tolerate at all and I am still only able to take the lowest dose. if I wasn;t a high risk as I have already had thrombosis in the past and have had HBP for years and my high chlorestrol is one that runs in the family I think I would take the same road as you. I sometimes think that certain foods do push up chlorestrol and you might find it is because you have cut out certain things and are eating more of others in your effort to lose weight that this has had an effect. By the way well done for losing all that weight I bet you are extremely proud of yourself.

Take care.x

Newquay profile image
Newquay in reply to rosewine

Well thanks for your comment, yes I was! Real happy but today was a supprised.thought it would have gone down, but the only thing we changed was to Butter instead of flora so thinking we will change back and eat les eggs.

Yes it's been a world wind of a year I had this op done on 23 rd March private cause NHS wouldn't do my hernia until it bust altogether. So I had it done private which my mum paid for before she died.so I ended up having to loose weight, I had umbilical hernia so I had a tummy tuck at same time, because he said he would do my hernia from the bottom up so have a TT at same time,but unfortunately I had a bleed out and a massive hematomer so had to have another on 6 April. And been left with a little lump not badly really but needs doing again in October. We missed our holiday in May because I wasn't to poorly to go.

So we decided September I would hopefully be ok so I have refused to go back till after my hoilday.

rosewine profile image
rosewine in reply to Newquay

Yes in your case it could be the swop from Flora. I love butter to be quite honest it is my little luxury in life.

You have been through it with the operations. My brother in law had his hernia op. go pearshaped and he had to have another scan on Monday and it looks like he will be back in again for another repair. Hope they can successfully sort it out this time.

Yes I think you are wise to have a rest from it all and wait until you have had a holiday you will probably feel stronger from the rest you have on holiday which will be a good preparation for the operation. Off to bed now as usual I have done too much in the garden and I'm absolutely gone now in body but as usual mind still wide awake. Hope we both have a better night.I'm sending lavender scented hugs as they are supposed to be good for relaxationx

Newquay profile image
Newquay in reply to rosewine

Night and thank you. My mind is never fully awake that's what I fine very annoying, I forget what I am doing when I am doing it.

I set off today to go doctors but forgot where I was going.lol

milo4 profile image
milo4

Hi I to was told that they were behind and it might be 16 plus weeks, that was middle of June , and he we are 6 weeks later and I've had assessment got my ans so fingers crossed yours will be the same x

Newquay profile image
Newquay in reply to milo4

Hiya did you get the answer you wanted . What did they ask and did they come to u. How much notice did they give you.

I am away in 4.5 weeks so I hope it doesn,t come while I am away.

They never asked if they were anytime I could not go, so I didn't say they ask enough as it is.

I know I will be a nerves wreck. And I have said they have to come to me.

milo4 profile image
milo4

Hi I had about 2 weeks notice they made it for the 6th but first thing in morning so I rang them and said I wouldn't be able to get there that early as i am in that much pain in early mornings,till meds kick in.

They changed it for me and made it later,but also brought it forward to the 2nd the man on the phone said your aloud to change it once.

I was told that atos are less likely to do home visits unless your doctor has to do home visits. I.e. you can't make it to your doctors.

I didn't have a very nice gentle man he seemed to think fibromyalgia could be cured,husband got a bit annoyed with him, so I thought that's it I am not going to get it.

Within a week I had reply. I got enhanced living and standard mobility, I thought I should have had enhanced mobility, but after hearing other stories was just glad to get that help,as I don't think I have energy to embark on yet another battle.

Newquay profile image
Newquay

Thank you for that, did you have to do anything while you were there. I have a friend that was asked to go and fill a kettle to make a brew, she couldn't turn tap on but once they had turn it on she just put enough water in to make one brew. She was found fit for work hum.

milo4 profile image
milo4 in reply to Newquay

Hi sorry didn't answer yesterday feel asleep again lol.

No they didn't ask me to do anything like that and you don't have to do anything you can't do or are in pain doing.just asked me a load of questions mainly going through what I had put on my form and how I'd affected my day to day living. My doctor told me to try and not take my pain killer's so they could see how much pain I was in and ans every question what I can do as if it was me on a bad day. Hope this helps, but please don't worry sure you will be fine, if I can help with anything else, please don't hesitate to ask. Keep me posted to how you get on

Gentle hugs trace x😃

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that and I want to sincerely wish you all the best of luck with your desired outcome, so fingers crossed for you. Please try and take one day at a time and please take care of yourself.

All my hopes and dreams for you

Ken

Hello, I am sorry your having to wait so long that is really unfair and causing you all this stress is so wrong. I know it is hard but it will be worth it in the end and there is nothing you can do so just try and put it to one side until you hear from them, expecting you to wait so long is really bad and they need to do their job properly it really is a lottery of where you live in the country which is ridiculous x

I put my ESA form in Feb and have only just heard about an assessment date this week. They said it was on first floor with 18 steps even though I told them in my form that I cant do steps at all. so they said the only place I can go for assessment is more than 17 miles away. I am so stressed about this.

Newquay profile image
Newquay

So sorry sounds like they are trying it on to me. I would ask if there is a lift as they have a duty to provide one not 100% sure on this but you could check up. Or if you get a letter from your doctors saying you real struggle with steps they have to come to you, if it is unreasonable distance.

BUT be ware I have know people say that they have gone for the assessment and they say the lift is broken so you will have to use the stairs! Trying to catch u out. And they also told them that if they didn,t attend they would lose there money. So if you truly can't use the stair under no circumstances don't Evan try.

Hope this helps and makes you a little wiser.

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