New recruit

Hiya all, I'm Tim, have been diagnosed with copd for about 8 years. Just lost my job on health grounds, and I'm just going through the p.i.p. Progress.

Just thought I would come on here as not many healthy people realise what we go through. I did a stint on PR, but I do just seem to be getting worse, I am keeping active, but now trying to do things in the garden is causing problems, I seem to have hay fever now as well.

53 Replies

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  • Welcome Two2sheds, you are amongst people who know exactly what you are going through and l am sure you will hear from others soon.

    Take care xxxx

  • Hello and welcome to the forum.

  • Hi nice to meet you. Did you try for medical retirement?

    You should also be able to apply for ESA as well. If you look on the Govt.uk site there is load of info on there.

    Don't forget you might also be able to apply for housing benefit and council tax rebate depending on your circumstances.

    I hope you got help from either the CAB or a local disability centre to fill out the PIP forms as they can be tricky.

  • Hi Lilaclil, yes they did finish me on medical grounds, and I am on the high level of ESA, the support group, so I don't have to work any more or look for work.

    I did get help from CAB to fill the form in, and I'm doing the council tax thing now.

    I am 63 anyway, but the last few months, I seem to have deteriorated quite a bit, my walking distances are getting less and less, to the point where I am now looking at buying a disability scooter, it's causing some problems with me going out with the wife as I just can't go far without stopping.

  • Hi, scooters are not an evil thing - whilst I walk whenever possible I also use scooters on a regular basis to extend how far/fast I can go.

    Because I still work full time I have to walk sometimes - COPS & arthritis don't help so a scooter becomes a pleasant alternative.

  • I have a scooter, it means you can get where you want to go and then be more active. It gets boring walking round the same small area. Also you get fresh air and vitamin D as well as meeting people. Personally I find it very helpful in this hilly area, as I am not able to drive because of deteriorating eyesight. Also means I can take the dog out occasionally when husband can't. All the best.

  • Hi Two2sheds, if you're applying for pip your ESA will stop, pip is replacing it . Apply for DLA aswell you may not get the care element but you should get the mobility. I reach 64 in July this year so can apply for my pension my ESA will stop but I will still get the DLA mobility component you will get help with council tax & mortgage/ rent . Fingers crossed you have no problems 😊

  • Hi Katie, as I understand it, I get ESA until I retire, wether I get DLA or not.

  • Hi Two2sheds, it is personal independent payment you are applying for yes ? As I was told by dwp pip is replacing ESA . I was going to apply for pip but they said if I did my ESA would stop again because pip is replacing it & I was nearly pension age , I,d check again ?

  • PIP does not replace ESA. It is replacing DLA (Disability Living Allowance). Neither DLA nor PIP have any impact on ESA.

  • I,m sorry MrsMummy your wrong.

  • Hi katiewoo. I (and others on here) claimed both DLA and ESA for a couple of years. ESA is an unemployment benefit and DLA (or PIP) is an extra benefit for those with disabilities which impact on their daily lives. The amount paid in DLA (or PIP) does not count as income and so does not have any effect on the amount of any other benefit which may be claimed. You have either been misinformed or have misunderstood.

    Disregarded earnings and benefits

    "Some benefits are not taken into account when working out income-related ESA. These include child benefit, attendance allowance, disability living allowance, personal independence payment and armed forces independence payment."

    disabilityrightsuk.org/empl...

  • I was thinking of universal credit my mistake 😥

  • There are so many and they are constantly being tweaked and changed and it makes it really difficult to keep up. :)

  • Hi Two2sheds , unreserved apologies it was universal credit I was thinking of 😥

  • No problems katiewoo 😉

  • No PIP replaced DLA. EESA is employment related and is not afected by pip good luck

  • It was universal credit I was thinking of , my mistake 😥

  • Ok. You can go back to PR more than once so maybe a 2nd visit will help a bit? Good luck anyway.

  • Hi Tim, welcome to the madhouse :)

    It is a shame that you have lost your job, I would be lost without my work, it provides me with a routine and keeps me active and gives a sense of normality. You should find something to do on a regular basis, to develop a new routine that you can fit into. Perhaps some voluntary work of some kind, where you are not under any performance pressures. A job working in one of the charity shops or something along those lines, light work but still get that sense of purpose, somebody has to do it, why not you?

    Yes you are so right, the healthy do not understand what we go through, neither do they seem to want to know, we are invisible, we don't exist. Or the exact opposite, that stare you can get, when you are struggling to breathe, seemingly waiting for you to die in front of their eyes without concern. Truth is, it is the look on their own faces that would cause me to burst out laughing if only I had the breath at the time to do so.

    Hay fever also seems to start to affect a lot of us when we develop COPD, it has me, my second year of hay fever that I never suffered with before my COPD.

    Keep up the walking Tim, it will only get get harder otherwise. I know it is hard work and difficult to keep walking, honestly. It can only get worse if you stop. Stop exercising for just 2 weeks and you start to lose conditioning, followed my muscle mass and it will take months to regain it all. Please keep walking, for your own sake, you are NOT too old to exercise, start using a scooter and you may end up relying on it all the time, which will mean giving up some independence. Keep walking, remember "the more you do, the more you CAN do". Taking the easy option is not always the best course to take. Exercise is the next best weapon to fight this disease after giving up smoking.

  • I think you hit the nail on the head. I have lived in the same area for 40 years, and know a lot of people by sight and to say hello to.

    But now when I walk to the shops, and I'm in some breathing difficulties, I dread people asking if I'm ok, because I can't answer them anyway because I'm out of breath, or as you say, they give you a strange look. I have even stopped and pretended to be texting on the phone just to get my breath and look normal.

    I do keep active, but seem to, as the nurse put it, "desaturate " quickly.

  • Sorry I can't agree with you in relation to mobility scooter. I have 2 scooters and they mean I go out more because I have them. Walking was too difficult and I took no pleasure in being out. I was unable to speak to friends due to breathlessness so stayed in more and more.

    Having said that I DO agree with you about keeping as fit as possible. I walk around at work and have just completed my 2nd course of PR. I have purchased my own set of dumbbells. I also walk when possible with my rollator.

  • I'm a bit confused bevvy, you say you can't agree with the mobility scooter, but say you go out more because you have them?

    I am staying in more and more (but still keeping active in the garden) because I feel embarrassed by being breathless in public, at one point, I even had a good soul asking if I needed an ambulance.

  • I think she was disagreeing with 2greys, who reccomended that you don't get a scooter but keep walking.

  • Oh yes, I can see that now. Thanks Maggie, and sorry Bevvy. Embarrassing.

  • Yes sorry for the confusion. I DO agree with mobility scooters and like you have had people asking if I need an ambulance! The scooter gives me freedom and means I can enjoy outings with friends and to the shops because all my energy is not used up with walking.

    I am going on holiday with best friend in a couple of weeks and will use scooter so we can go out and about for the day. The one I will take with is a travel scooter and I have a hoist in the back of my car to help get it in and out. Some places are difficult with a scooter such as steep hills and then I shall use rollator and walk very slowly!

  • That was my point. If I need to go to the shop when wife is at work, I put it off and wait until she comes home. I am also putting off going out together as I feel like I'm holding her up.

  • Suggest you get a scooter so you can go out. Otherwise you can very quickly end up not going out for anything. If you can afford it I suggest now (because of the weather) is the time to buy. Lots on market and you need to decide what you want it for. This is why I have 2! One a pavement scooter to get to local shops. And a travel one I keep in back of car for when I am out and about.

    I have used Careco.co.uk to purchase and find them very helpful to talk to about my needs.

  • I was looking at a compact 8mph scooter as I don't really (can't afford) want two.

    The rascal ventura looks like a very good possibility, do yo have any recommendations?

  • No idea but is well known brand with lots of different scooters

  • I also use CareCo and find them helpful. I'm greedy, I have three! Only needed the really powerful one since we moved here though, as it is a very steep hill down to the river bridge, and then a corresponding hill up the other side to the Doctor. Means I can be independentof my husband. Bus service is useless and doesn't solve the hill problems.

  • Sure you would benefit from having a scooter. I use my husband when we are away and he hires one for a few days.

  • Hello Tim and welcome to the group. It's surprising how many people seem to be getting late onset hayfever these days, me included, and that can have a big impact on what you're able to do. Why don't you have a word with your doctor if you feel that there's been a significant decline in your condition. He may be able to tweak your medication or refer you back to PR.

    Wishing you the very best of luck, and I hope that you get some answers. XXX

  • Welcome to the group. A great bunch of people willing to advise and give support. Good luck with pip. Apparently you have stress what you cant do and not what you can. I have got to move from DLA to pip so I will be joining you in the process. Good luck for the future and remember it's not a lonely journey with this group

  • I tim even my friend says i look good and not ill and he comes most nights to say hallo and i have k nown him for over 30 years now i stopped doing the garden a long time ago just had a few baskets untill last year but not even that now so take care when you are doing the garden

  • Welcome Tim, I am seconding Sassy's post, take care and try to keep active, I have learnt a lot from this forum which helps me enormously x

  • Hi there welcome to the forum .

    Don't be despondent on coming out of work too much. I came out 24th April due to medical grounds. Iv started a counselling diploma if there's a local college near you find something that interests you and take the course.

    Try PR again you can go more than once and it keeps you fit and moving .I do tai chi it's perfect for breathing and body stretching which is good for us .

    I walk regularly well daily .If those people look at you while your out of breath and you know them tell them your doing ok and your trying to catch your breath don't feel embarrassed by it. I do hope you feel better soon with things don't let it grind you down too much

    Take care Angie xxx

  • Thanks Angie, I think it's the readjustment, I'm struggling with, I've never been out of work in my life, that's 48 years working. I think I had to wait for one year to do PR again.

  • I was 42 years in work never unemployed it will get better. If there's no PR available you should have an option to have a prescription referral to a local gym for a breath easy class that may help you some. But look at doing tai chi it's amazing to do xxx

  • Started doing Tai chi about 20 years ago, then became more interested in its background and links to Taoism and self healing,fascinating.

  • I love it complete beginner as of 5 months ago tried yoga but not stretchy enough lol

  • Hi Two2sheds, welcome to the forum. Very chatty lot we are, adjusting to medical retirement takes time and theres all the financial bit to sort also, but once thats over you can concentrate on your health. There are many people on site who can advise from experience. I have more than one illness but still walk ect but at a much slower pace than others and some daily tasks are nigh impossible, so adjust to suit your own need,Take care and hope to speak more in the future.

  • Hello & welcome Tim

  • I developed allergies as well and have to take medication for that.

  • Hi Tim, PiP can be a hitch but if you do it correctly you won't need an F2F with ATOSSER , go to a site called"Benefits and work" you will find all the help you need. Good luck buddy.

  • Hi Tim welcome any problems with pip CAB are wonderful with all info & will help with forms they also have a Website which tells you what you need for the points system. Hope everything works out for you keep us informed. I also suffer this time of year grass isworse lucky I & 4 neighbours do not have grass! Also CAB will help with finding out what else can be claimed regardin Rent etc. Good luck with your pip assessment

  • Hi sad when u have to give up work it's like you have been dump I had to give up work through a disability and couldn't find anyone who would take a chance on me. The I found volunteering I chose or should I say they chose me RNLI saved my life started working in shop then became a visits officer verry interesting meeting loads of people and children, I was thinking of jumping in the sea know talk about save in lives at sea, I have trouble walking through my disability then told I have copd I think I am lucky I get exercise riding a bike get puffed but skegness is flat I have great friends who treat me as normal but are there when I need them, the think I find strange is that not only cold weather is hard but hot weather is can stop me in my tracks, I have though about a scooter but try to walk with crutches and a walker felt self conscious but got my head around it, know I wouldn't have time to go to work, don' let copd get you down sure your wife woun't feel your holding her back

    Yellob

  • Thanks. I'm not that low, and I have more than enough jobs to do, it's just knowing where to start. I just feel overwhelmed by losing my job and all the forms to be filled in. Thanks again.

  • Hi. I get P.I.P. personal independant pension. They said that is my Disability Allowance and my Mobility Allowance. That's all lol 😕

  • Any concerns regarding pip go to the CAB Website it has all the info on there

  • Two2sheds,Hello,

    Sorry you had to stop working because of your health,you Really need to be active as much as possible ,well I use a Spirometer and I blow into balloons too.I have allergies also YES hay fever as well,I take Alegra for my hay fever and it's really under controlled,I take Flonase also to control my allergies which both medications work for me.I really hope that you find the medications that work for you.perhaps once your allergies under control your COPD will get better...I'M HERE FOR YOU IF you care to reach out ,ok

  • We now have a new practitioner nurse to deal with respiratory illness, I see him today and have an appointment for next week when he is going through all my notes, medications, and diagnosis , and explain it all to me to make sure I understand where I am .

    He is also going to do my spirometry test for me. At last I feel like I might get somewhere.

  • Good for you take care and God bless

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