Feeling like fool for thinking I would find ... - Pain Concern

Pain Concern

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Feeling like fool for thinking I would find help. Not nice when your back feels like Bus is parked on it Against hosp policy to treat me

FabBabs profile image
FabBabs

I'm a 64 yr old Mother of 3 and a Grandmother to a 12yr old..I care for my 40yr old daughter who has a severe mental illness It was in my caring Role,That Whilst my spine was in a twisted position a disc ,popped out and impinges on a group of nerves at L5 ? and arthritis of the coccyx..When I put my foot on the floor I pee ,and have to wear Nappy's,The pain is shutting my life down.Have only left house for dentist and my daughter holds and supports me on one side and I use a stick on the otherside..2015 I felt in safe hands consultant at private hosp.Planned a course of 3 injections in the spine and more physio then we'd explore surgical option.OK.After first 2 injections I heard no more..I became depressed as you would feeling you're in x everyday of Life.Helpless and vulnerable,couldn't even place a pineapple in a shopping trolley ! Pain was intense..Painkillers were making me pass blood.I told Gp I was getting addicted to Codiene.He prescribed me a spoonful of medicine which I take every morn.at 6am.Then got a New Gp I told him in march last yr.I was depressed.Hosp said Hosp.Policy could no longer treat me.??? because of the medicine I was prescribed.He put me on another hosp list for urgent pain management.I spoke to them the other day..."we cant treat you,because you need a team" she said "you are on a programme " I said I'm not !! I jusy take a spoonful of medicine in the morning...but no...It's methadone...apparently it should of been short term.I've been taking this little spoonful for a decade..Now 2 hosps wont treat me for pain management...

On top of which the £220 a month benefit I recieved ,which helped me afford A Nappy every day..I saw osteopaths,chiropractors,accupuncturists..No one could help because my spine was in the twisted position,when the disc protruded..I had to try and learn to walk again ,my foot dragged.nothing was automatic anymore.Pain has been relentless .only relief is horizontal cradling my spine in a memory foam matress. I seriously dont know if I can live much longer in so much pain.I've been put on another list another yr to wait. Oh yeah !That 220 ;my benefit help; stopped. I'm 64 in constant pain cant walk any distance unaided..I cant even put the kettle on, I have to walk on all fours somedays I just cant stand up !!I feel I've been kicked to the gutter..An overpayment they say occured whilst I was depressed means I will be paying back until I'm 78. How long b4 I'm thrown to the wolfs.Struggling to keep the roof over usI Its giving me nightmares...

16 Replies

Lots going on here. Feel for you. Some ideas for you to think about 1. List on paper what happening medically and go with it to gp. They must do something to help you.

2. If need physical support to walk then just using a walking stick obviously not sufficient. What about a rollator/walking frame on wheels. I use one for any distance and has been wonderful. Mine has a seat so when I need a rest I can have one.

3. Problems with benefits. Speak to CAB to try and untangle what happening.

4. Are you in receipt of PIP? Strongly suggest applying if not. Again CAB can help with forms or their website will help complete forms. Is actually important you get some help with forms because is an art to completing them.

5. I note you are 64yrs. Even more important to apply for PIP. If you in receipt of this before 65yrs you will keep it after 65. If you wait to apply after 65 years you can’t apply for PIP. Can only apply for Attendance Allowance which is a payment only for care. PIP is for care AND mobility. So more money.

6. Does your council have money advice unit? Most do. Again they can help with benefits advice.

7. And finally if you need to wear hygiene pads can’t you get these via NHS? 1 pad a day isn’t enough and you risk infections....

Hope the above in some way helps.

Ps is your daughter getting support for her mental health needs? Shouldn’t just come down to you. Especially when have own medical/health issues

FabBabs profile image
FabBabs in reply to Bevvy

Aaw Thankyou that is a really sensible response.It's one that I truly needed ...I shall use your advise ,as I was completely losing my way...I have to find help from somewhere.I got in a stupid mess wiv my forms..I do get burn out from time to time coping wiv my daughter,her mind depends on my mind...but she's physically strong and supports me when I walk.Thankyou for sound advice..

Bevvy profile image
Bevvy in reply to FabBabs

I really believe you should look for alternatives to your daughter physically supporting you when you go out. As well as meaning that you can only go out when she is with you. It is also a physical strain on both you and your daughter. An occupational therapist could advise you on different walking aids. They could also look at your physical needs at home. You may well benefit from additional aids and adaptations at home. Eg grab rails, chair raisers. Maybe contact social services to get an OT assessment. They would look with you at ways to keep you as independent as possible.

FabBabs profile image
FabBabs in reply to Bevvy

Ps.Your very right about pads,I'll only wear one during my active 3 hours...I know infections can go up to your kidneys and then people lose thier mind ,hallucinating and everything from a urinary infection and if Anti-Biotics dont work...It's time's up...So I must resource nappys so I can have a late night..

You situation is unbearably difficult. Have you tried Adult Social Services with one of their care plans ? I used to work for them some years ago and they will come out and assess your needs. Hopefully they can help you a little .

Hi like you I suffer with my Back, About three years ago not sure of the dates as everything then was a blur I had a serious breakdown, not sure why, So I ended up with a psychiatrist who diagnosed Severe Depression, and Anxiety and Agoraphobia and Panic attacks which means I rarely go out now but then my back started (2yrs maybe) So I ended up having Numerous M.I.R Scans and then they tried Blockers although he said it probably would not work? so then I had a Spinal Op which for someone with Agoraphobia meant it scared me to death of being there not the Op just people, but the General Hospital were great I had a small room to myself and returned the next couple of day they shaved a bit off my spine to release some of the Pressure but sadly it has made it worse as the nerve(s) have moved I do know what its like in the Morning some days I literally have to throw myself out of bed and because of the way my spine is my right foot will stop for a fraction of time and I fall over now my Left foot has started I have gone from a Person that has trained most of my life to a wreck I am 62yrs old and that nowadays is nothing I agree with what Bevvy has said especially about CAB and you can do that online I tried to get P.I.P and they have told me I cannot have it or help with grab rails as I have said that I can walk more than a Hundred yard??? What I did say was on a good yes more than a Hundred yards but on a bad day 10yards and I am likely to go over ...my support worker said he could not believe it and that we would go against that decision but then he left so if you do apply when you do your written paper make sure you put everything even to the minutest detail , Read it over and over before returning, One thing I will say is there are good people, like on here I cannot talk to people but doing this I do not mind, also I would tell your Daughter to go to the Doctors and explain everything I was Lucky I found a good doctor who not only helped me(Saved my Life) but also got all the help I needed try googling free help for your walking accessories I was told that British Legion can help me with my rails etc I cannot use a walking stick as it becomes a trip Hazzard 😔 but try them just don't give up hope, every day is a struggle I know how that is but keep coming on here ....Sorry for going on, Hope you get all the Help you Need and DESERVE 👍

Bevvy profile image
Bevvy in reply to ZeN01

This is a really good (bad) example of why you need advice/support to complete PIP forms. You never state can walk +++ on a good day. That is why refused. If only have a good day every once in a while or 1 day out of a week you base everything on a bad day.Depending when you turned down I would suggest you reapply but get support to complete application form.

As said earlier CAB very helpful including online information. Or organisation called benefitsandwork.co.uk have lots of information and guides for whole process. Plus guides for other benefit applications. Does cost to join about £19 per year but if you successful then worth every penny.

FabBabs profile image
FabBabs in reply to Bevvy

Thankyou,Such an inspiring response ,I'd lost my vigour ,so worn down by the whole process My pip assessor seemed to get totally fixated on one thing...It didn't matter How many difficulties I explained I had....The Question was Q) do you understand symbols ?I wasn't sure what they meant.? I replied ,I dont know what all the symbols on my phone mean.I cant read traffic signs.and I only know what some symbols for washing machines are.

However I'd mentioned how very stressed I was.I said when I first experienced stress when I was a young Mum, I found embroidering cushions helped me..Her response was "because you know how to embroider you must be able to read symbols.

In the mandatory consideration she stuck to that one thing as if she was a great detective !!

When I was talking about stress I mentioned what I first did as a young Mum 40 yrs ago...!! I havn't embroidered a cushion in 40 yrs...It was a coping strategy I'd adopted back then...O my gosh...It was only cross stich anyway but that was beside the point..The assessor had me .

In disbelief....Guess nothings ever simple...Maybe it's a trick question..? I think I'll leave that question out nxt time...and definitely get that support..God bless and thanks again...xx

Well FabBabs, this is not right what you are going through. Firstly could I make a suggestion contact your local MP , plus age uk, and mind for your daughter. At present a campaign in respect of poor care in the community is ongoing and we need cases like yours to be highlighted. Now in respect of more immediate need you can fill in a form on line for a social service care assessment for you and your daughter do not take no for an answer. Bevvys list covers the essential bits, the fact that you take a certain drug does not exempt you from other treatment or care. If not too late ask for a review of your benefit but do seek advice to do so, that way you get into the advice systems computer too. I don't get nappies as you call them but if you can't get them from NHS then I found some on Amazon at a greatly reduced rate by buying six packs at once. They were a godsend when I had my operation for knee replacement. Beware of medics who put everything down to depression or anxiety. Depression is a side effect of pain and the stress of your situation does not help. A walking frame, preferable rollater type works well as you can adjust the height so you are not in a bent position. Ironically the mobility component states you must be able to benefit from go ing out then states if you walk more than a hundred metres your not entitled. Its not about how far you can walk its about whether you can walk normally like someone in your age group would. Some refusals are now boardering on illegal by the DWP. But to challenge that you need a good benefits advicer or solicitor. Hope these things help you and give you hope, ask if you have questions even private message if you want and every best wish to get it sorted as soon as can be. Take care & stay safe x

FabBabs profile image
FabBabs in reply to katieoxo60

Yes I was looking at some Rollators 2day ,and I've been ringing around...I think I made a bit of a mash up of my forms...I have hashimotos and for a period of 9mths or so, my blood tests kept showing as the thyroid meds were not working.So I had Brain Fog and simply could not find a clear space...and when I put pen to paper My flow was a little erratic..(To say the least) I think it was more of an outpouring than A Uniformly filled form...A friend mentioned they'd seen a programme /News report ..where there have been 100 suicides relating to cuts from Dwp !! That is tragic...very very sad..

I'd also held back from asking for help thinking that so many people were needing help atm...foolishly I 4got about me.

Only when I realised I was in Dire Straits did I ask for help..Oh well .I pray I get through this..With many thanks for your inspiring help...I can all but try... Thanks again...Your response is like a Rock to me...gives me a positive focus, such a help I simply couldn't see my way forward...Thanks again...& I hope your knee is getting better.

Bevvy profile image
Bevvy in reply to FabBabs

This is a link (if it works) to my latest rollator amazon.co.uk/gp/product/B06... is a Let’s Fly rollator in red. Wasn’t cheap but is a lifesaver for me and looks really smart.

Remember when approaching social services for an assessment. You and your daughter will be treated individually. Will both have a separate worker. This is normal but especially in your case because you will come under different teams due to different disabilities.

Finally please do reapply for PIP. As an aside I was never asked about symbols.....🤷‍♀️

katieoxo60 profile image
katieoxo60 in reply to FabBabs

Thats the idea try to think of yourself for a change, you need to be recognised on the systems to even be considered for help. Every best wish do let us know how you get on.

Thank you 4 your response..I'll certainly try and take your suggestions on board...life is such a battle at times..Thank you 4 laying out a clear strategy. I'll do my best.

Hello FabBabs, God love you, you're going through the mill!1) request an Occupational Therapist or Social Worker for yourself and daughter.

2) appeal your Benefits, that you're most certainly entitled to. Get in touch with your local Councillor who will be able to take this matter to a Tribunal. Have you Disability Action where you live?

3) there is so much help available for both of you so get your M.P. on board as well. These people can visit you at home because You Are In Constant Pain And Discomfort and let them know this. With Warmest wishes. X 🌈 🌝

FabBabs profile image
FabBabs in reply to Aoibheann

Thankyou , It was so nice to have these positive responses, It almost feels like I have a nice kind Mum..giving me the best directions and empowering me without judging me harshly..I'm certainly going to take on board.. Thanks again.

Aoibheann profile image
Aoibheann in reply to FabBabs

Good for you. I wish you all the luck in the world 🌎. You and your beautiful daughter take care of each other. Love 💘 💘

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