I really do just feel like giving in - Lung Conditions C...

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I really do just feel like giving in

james1512 profile image
17 Replies

Well since my last post things just keep going from bad to worse really don't know what to do any more. Finally got a appointment with my specialists and was told my condition had progressed beyond being treated with medication and I will need operations. And he told me to go see my doctor for backing and support as I have been trying to get support and help for nearly a Year as I find nearly every normal everyday activitie impossible. He wrote me a note explaining how server and chronic my condition was and how it afftects me. A few days later I got yet another letter rejecting any help and was told they do understand that cooking a meal is something I can not do and should eat microwave meals. Well that's a great help. I am 36 this illnesses has taken everything from me I never go out never see my friends anymore as I am just too tired to go anywhere anymore.

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james1512 profile image
james1512
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17 Replies
Suzy6 profile image
Suzy6

James They can't keep passing your problems around like that. I can understand you feeling depressed and fed up. Someone on here will be able to advise you and I'm sure they will answer you. I'm not really that informed on these things. I do know that when you are feeling unwell and depressed you haven't the energy to fight. Have you any friends or family that can help you fight for the help you should be receiving. This answer is really just to day hello and stay with us for help.

james1512 profile image
james1512

Hi Suzy thanks for the reply. No I have slowly lost touch with my friends as my illness got worse. I am just so fed up of it all now.

Suzy6 profile image
Suzy6 in reply to james1512

Yes I have lost touch with some friends who can't understand one day I'm active and fine next day breathless with no energy and just showering and dressing is an effort. Life is a b**** sometimes James. What is the weather like where you are and what are your plans for the day?

pergola1 profile image
pergola1

James: It seems to me that you have got yourself so down, that the only way now is to go up and look for peace of mind. It can be found and I can hear you say "HOW" but for a start ring the BLF nurse - see "about us" at the top. If you aren't satisfied with your GP, either change or certainly contact PALS.

There are various excellent NHS and health related websites but keep them British, and only go to known ones. Patient care UK (?)

There is an allowance that you could claim but perhaps someone better informed could help.

I really wish you well, James. Please dont be alone, there is always someone around here to chat. xx

james1512 profile image
james1512

Hi suzy Ye it's hard for people and my friends to understand how it afftects me most of them just think I a lazy. And the weathers great suns shining and it's red hot. Don't have any plans for today not feeling the best today. How about you you have anything nice planned

Suzy6 profile image
Suzy6 in reply to james1512

Hi James weather here is beautiful but I woke with a migraine but on the way up now I have been sick so just a quiet day may sit in the garden and read. Off now to attempt shower and dress. Stay in touch xx

jenss profile image
jenss

Hi James, I am very sorry to hear you are feeling so poorly. I am not sure from your post, but have you seen your GP with the note from the specialist? Do you see a nurse and have you discussed with her/him? Please ask your GP to be referred to pulmonary rehab. Please also ring the BLF for advice. I cannot suggest anything else but I am sure someone else will be along who knows more about who to contact and how to claim benefits. Please take charge of your health problem, there are many things such as dealing with infections, mucous clearing, exercise, good food etc that you can do for yourself. AND don't forget we are always here to listen and advise as best we can. I wish you all the very best and hope to hear how you get on very soon. Take carexxx

This can't be overlooked James so you mustn't accept what you're being told. Act on some of the good advice that's been suggested here while knowing we're all here to listen and support you in what you decide to do.

Find out if your local surgery has an asthma nurse and also whether your local hospital has a respiratory team. Not sure what condition you've been diagnosed with but I'm sure it's true to say that there'd be support for you.

On a more practical level CAB and/Age uk will both come out and visit you at home and can explore a number of areas for help with day to day living. Take whatever help might be out there and don't give in.

All the best to you....Lovelight x

tigger1977 profile image
tigger1977

Hi james

Im sorry to hear of the time ur having at the moment. (((Hugs))

Im 37 . And can understand .x

May I suggest the citizens advice people . For ur forms.

Ur friends should try and understand. Ur not being lazy. It is a struggle n very exhusting.

Im not saying u should have one. But I found my social worker a godsend

They also set up all my care needs.

Sorted all my forms. And benefits.

I also take a small dose antidepressant.

so the crap days dont seem to suck so much. U no.

keep talking xx

Hope I have helped x

Louisiana profile image
Louisiana

No wonder you are feeling so so so down - they should be ashamed of themselves. Do take on board what everyone is saying to you on here and do get some official help.....even knowing that things are being done will give you a boost. I can't give you advice, but I do send you my very best wishes, and make sure you keep talking and keep asking for help. Lots of good wishes. :)

Perhaps the BLF helpline could offer advise click on the ex balloon and others have said don't give up - you keep on fighting until you get the help you need. You deserve it. Lots of love TAD xx

cofdrop-UK profile image
cofdrop-UK

Oh james this is unacceptable. Please contact BLF for some advice. Re help with benefits please contact a benefits expert to help you. CAB as mentioned, Welfare Rights, or DIAL.

I think most of us with chronic illness have lost 'so called' friends, even long term friends - people can be very fickle.

The one thing about friends we meet on here, though not in person and even though our conditions vary, we all have similar struggles and can therefore understand both the physical and emotional feelings that go with it. Lots of info and support.

Hoping once everyone has had a kick up the whatsname and become more proactive, things will improve for you james.

Wishing you well and please let us know how you get on.

Love cx

hopetorun profile image
hopetorun

Hi James I know at times it is a bit like dropping off a cliff and becoming full of despair, but each day you wake up and try to get on with life. It would be good to link up with your local blf group maybe you could meet some new friends their. I think trying the exercise referral scheme would be good as again you will meet people who are similar to yourself. What is it that makes cooking a meal difficult if it is standing you can get perching stool so you can sit whilst preparing food. I find keeping going and doing things much better that just looking at what I cant do. Why dont you write to your friends and try to explain the problems you are having you may be surprised they may be more supportive.

I hope you feel more positive soon and get a better response from your GP good luck Irene

Suzy6 profile image
Suzy6

Hello James. Are you feeling a little happier today having read the messages from all these caring people? How you doing today? We can't come out to play with you but we are here for you. Hands across the water xx

junespoon profile image
junespoon

Oh dear James, really feel for you, you have been given some excellent advice above from people who know, so slowly but surely,chase it up, you have many friends here,dont forget, and we are here 24/7 xx

if you cannot get the help that you should then contact your local MP or other politician and ask for urgent help to press your case.

james1512 profile image
james1512

Hi there thanks for all the help and support still trying to go though them all and decided what to do first it has really help hearing all your advice feeling a little better today suzy to know there is still options open.

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