Concern about letter

I as some of you know got "dismissed" on ill health by NHS by my Occ Health Consultant, Manager and Personnel.

I put in a pension form and they are now asking for more information by the Rheumatologist. Its just stressed me so much as I just half expected that if you are laid off they would know u r ill!!!!

I see the Rheumy nurse tomorrow so going to say to her to document in my notes how i was doing, but I'm sovery unsettled as what will i do without money till i'm 67yrs old for my nhs pension. I got DLA but just worried and asked the Rheumy Secretary if i could see a copy of his report, its my life after all. She sounded surprised, but what if he just said on drugs for RA and didnt not mention what he said about me not being controlled.

Worry worry worry.......

Axx

34 Replies

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  • I think on ill health retirement you get it earlier? x( mine is meant to be 67 too!!( im still in nhs albeit part time! we are too young!! other people get theirs at an earlier age older people that is!!

  • Thats the problem Summer, you can get dismissed but you have to apply separately after the dismissal for the pension and mine hasn't come through yet, so laid off, no pension yet and needing MORE info, the form was pages long. Still stressed ...................

    A

  • Go to the dwp and see what benefits your entitled to. You have worke hard for it so apply you need it. love sylvi. xx

  • Deep breath.... Think calm thoughts..... And just try to hold on to the fact that they haven't actually rejected your request so chances are that your worries won't happen. Just because it hasn't come through yet doesn't mean it won't. It can take ages. And the people doing the paperwork the other end won't be thinking about how distressing the delay is for you. If the worst happens then there are appeals, but don't wish bad things for yourself. Could you perhaps tell yourself that there's no way you'll get a reply this week, so you can have a couple of days without fretting? Px

  • Ye your probably right. I feell that the whole darn world is crashing around me, keeping the house done is hard, shopping is hard, walking is hard, and I have not had my wages coming in. Ye I'm lucky to get dla but I'm thinking I always get a summer holiday with my wages, I darent book in case I don't get my pension. I'm still waiting on my second mri scan, just started Humira and get my second one tomoro. I feel as though the control I had when talking to tHe docs has gone as "they" who control my money haven't come up with the goods. My mother in law is being awful and I have had to tell my husband to take over her care as I can't do it anymore. I got tickets for V fest and the disabled site is full and I don't know how I will do it but really wanna go, I just wanna be myself again. I am as you can tell feeling very sad and fed up because they want even more info, I'm sick of going for medicals for this and that..car discs etc etc, I want my life back, don't wanna spend another morning at the hospital tomoro, Axx

  • I understand what your saying as i have had times like that,i feel like chucking all the drugs down the toilet. You will get there my friend i just know this. sending you hugs and kisses. love sylvi. xx

  • Thanks Sylvi, just so fed up, its such a struggle just getting through and i try so hard to be positive but for some reason this just feels like a kick in the teeth Axx

  • Be patient, I know its frustrating, but it will all be back dated and I am sure it will come right in the end.

    ((((Huge HugS))))

    J :)

  • Thanks Jo. That hug felt nice, i'm not usually like this but i feel so worried and stressed, i just feel that i have disappeared down a big hole in the last couple of weeks. Axx

  • I know, it would be lovely to "be ourselves" again wouldn't it..... but it will get sorted, and you will find a way through this, and you will find yourself again - different but not necessarily worse. Try to use the energy you have on something with a positive result, like working out how to get to V fest. And as for things like summer holidays, well it's a lot cheaper to go away outside the school holidays, and weather may well be better in the early autumn anyway as its such a rubbish year weather wise. So ditch the MIL, give yourself a day off filling in forms, and I hope the hospital was ok this morning. Pollyx

  • Thanks Polly, well i got my second Humira, and am gonna put on a blog to see if anyone else has had stress feelings after the drug. I know i'M LOOKING FOR SOMETHING TO BLAME BUT ITS PROBABLY JUST THE ILLNESS, RETIREMENT ETC ..sorry about the capitals I just cant be bothered to retype it as the cap lock came on....see thats so not me!!!aaargh Axx

  • It Ileaves me cold that the NHStreat members of their own staff in such a dreadful way. I too am a nurse and have been literally threatened, that I need to get back to work,as their is only so much the NHS can sustain. Well they actually want to be on the receiving end of the pain tolerated by the sufferers of RA. I wholeheartedly agree with you. Keep going you are doing well. You are only asking for what is yours. It's you life you are in control so don't be dominated by others.

    Your husband can look after his mum, till you feel strong enough to cope. Give yourself a break, you deserve it. Get your friends to rally round and help you get to the festival. Let others do the worrying for a bit... these thing take time to be sorted out by administrative staff. Keep yourself organised as your RA permits and yes go enjoy the V FESTIVAL YOU DESERVE the break,

    Thinking of you.

    Carole

  • Well said carole. There are ways round the ra,don't let it define who you are. xx

  • lovely thoughts

  • Hi watson, I hope you have your occupational health on board mone were terrific and tried every way to get me mobile and sorted but eventually they were making the same noises to me about its unsustanable to cover your job, and i got "dismissed" very nicely but let go all the same and then you apply for a pension, and that is now why i am worried about the wait, the more info, the no answers i hate it.

    I will go to V but its the 3 mile walk into the site with your stuff that is the killer, the disabled camping is right beside the car park so its much easier to do , but i got ticketmaster to fight on my behalf and hope it helps,. oh well........

  • Morning Allanah!

    Sorry to hear of your distress. I know how it feels as I have also been dismissed from local authority for absenteeism/ill health and left to carry on with the IHR saga. Sadly like me you probably live and breathe the IHR because as you rightly say it is our life and we have given so much and now we need what is rightly ours, the system appears to work against the likes of us, who have given our all! Hold on in there, its not a foregone conclusion. Try to enjoy a trip out as they dont come around often enough for us (RA sufferers). The paperwork is always gonna take time to sort out-bureaucracy and all that. What ever happens you have a loving family and you know we are here for you anytime as those above have said. Stay strong and dont let the b....................... get you down. Thinking of you. Asa's mum xx

  • Thanks, ye dont know why i'm reacting like this and being so overly worried, i am generally strong and independent and i think this feeling of loss of control over my finances ( i have always been high up in the nhs) and no control over my ra as they are still struggling to get it sorted and no control over the family its driving me nuts!! AXX

  • Its like looking in the mirror. You seem to be in a similar situation to me! I think it really hurts us when we have always been the "doers" throughout our lives and had to be in control. This disease does give us brain fog at times as well as all the pain to cope with. Thats why I feel this IHR is ok to go through if we were well we would just take it as it comes but when your ill and the disease it not controlled its a different ball game. I just wish my employers would have shown just a little but of care and respect, after all we are only human!!! Let me know how you get on and I will keep you informed of my saga ! Lets hope we celebrate soon!! xx

  • Ye i worked over hours regularly, worked on my days off, slept at the hospital when there was a crisis, slept over after long operations so i was there for the morning etc etc on call 24 hrs and when they said i was dismissed i just thought what a waste of all that time, u r just a number. But i did enjoy work and the patients.

  • Hi Allanah,

    Sorry to hear that you are feeling so frustrated. I would also follow Sylvi's advice and take yourself off to the jobcentreplus office to check out your income entitlements while you wait for your IHR saga to resolve.

    I've already mentioned on another post that I've become really conscious of the effect this justification of our condition is having on our mental wellbeing in general.

    I wonder whether any kind of research is being done about it? I think the system at the moment is likely to exacerbate any chronic illness and actually trigger flares which, in the long run, causes us more misery and the government more money.

    Head up Allanah! Get yourself to that festival by hook or by crook - the adrenaline will carry you through it - just book yourself some bed time for a couple of days afterwards. xxxxxx

  • I agree Creaky, all this paperwork and dla form filling and car parking form and medicals etc and all the RA docs appointments, podiatry appointments, nurse appointments, diabetic bloods and blood pricks four times a day, steroid drips, tablets, physio, spinal docs i am just so sick of feeling sick, really had enough of it, could u take it away now please! I do feel the paperwork is worrying me , if it was me filling it for someone else no bother but as its for my finance for the rest of my life it feels huge!

  • Hello Allanah, don't panic just yet, you know that they always seem to want information in duplicate so hopefully they just want to get the paper work sorted. Enjoy the festival...

  • cheers mads, i hope not, i'm not usually a panicer but for some reason this letter trigger of anxiety , better start tai chi or something or i will be a wreck, mind i did have a panic over my mri, gosh must be my age!! Axx

  • Hi Allanah, this is all just red tape, hang in there and know that we all have hard times and the good times are all the better for it, best of luck, hassle them until they grant it to you, but don't get too stressed to cause more flares! Gentle (((((hugs))))) Jane

  • Gosh yes Jane, i definately dont want another flare just had one a couple of weeks ago and thanks for the hug, fell like i need one!!Axx

  • Just been to bed for three hours after my Humira!! Burned out i think, thanks everyone () Axx

  • Hi Allanah,

    hope it all works out OK. I fully understand how you feel, knowing that you are unable to workand then worrying that you won't get IHR. Unless things improve drastically thats where I will be in the future. When you are used to being in control over things it completely knocks you when you realise you have no control over whats happening in your body. Try not to worry as that will only make things worse.Hopefully knowing that you don't have to attempt to struggle into work again will take some of the stress out of things and you can enjoy the things you can do without feeling guilty that you shouldn't be enjoying yourself. Hope you manage to get to the festival.

    xx

  • hi, The festival is the second last week in August and the next one is Leeds which is the week after but got on the disable campsite within a week with no hassle. Ye red tape is ridiculous. I do not to chill a bit i think, being a bit deep maybe Axx

  • Hi Allanah, I'm finding myself in not to dissimilar situation to you although I don't work for the nhs. Money being a big worry. Go to the V feet and enjoy. Ask for help to get in and out. Don't be a martyr and struggle. It's not worth the pain and tears after. If I was nearer to you Hun I would be there to help.

    Thinking of you. Angie xx

  • Oh Angie thanks so much, u will have to come and carry my stuff into v fest then lol!!!! I just hope it goes ok when the doc writes the report which i still havent seen, oh well, patient is a virtue as my mum says thank Axx

  • Hi Allanah sorry things have been so bad for you and I've not been around much to offer support. I was travelling and now in Edinburgh on holiday for a week. I'm a self employed and don't earn a bean just now. I have applied for jobs recently that I know I could have done well but felt obliged to declare the RA and haven't had success with them. Also applied for public art commissions and have worried that if I get them then I won't be well enough to cope with the strain they put on me. My OH concluded that with the effects of the meds as well as variable disease I might find short term projects harder and I think he's right. But it is so frustrating and very bad for the self esteem too. I haven't applied for any benefits yet because I read so much on here and think it would just finish me off to have to fill in form after form and then be told I didn't qualify - it sounds too much like being an artist to me!

    Think of all the people whose lives you will have made a difference to? I've only been in hospital a few times, three of those having my sons, but I still remember the good midwives and the supportive health professionals with deep gratitude and I know people will feel similarly about you so it's not been in vain at all I promise.

    So a great big cyber hug to you from a rather dreak Edinburgh and I really hope you're spirits pick back up soon.Tilda xxx

  • Hi Tilda,

    I'm thinking like you were a few months back when u wondered if the mt8 made you feel down. I think I had one dose of humira when it started but i will read the side effects and see if this is so. My nurse didn't seem that bothered when i told her re pins and needles in hands and feet and feeling anxious. I hope its just a another stage of this illness and i pick up soon.

    I can still laugh and joke though but just "on edge" feeling of losing control of my life is the worst thing. Thanks for the hug

    Axx

  • Aw Allanah, I have been away from here for a few days, I see I am getting too far behind in reading. But, I do agree weth everybody above here, it's just timing. Once those papers are in someone's hands, things will move along. But it is a real worry! What if they turn it down? You know they likely won't, but the nagging in your head just won't quit!

    I do have a suggestion that might help, because I find myself doing the same thing. There are days like today when my "To Do List" is jammed full, I am overwhelmed, knowing I'll never get it all done in one day! So, I made some more coffee, had a nice 12ounce cup, with Splenda and cream, took it out to the patio, where much of the to do stuff is, and sat and sipped my coffee. I gradually felt relief, by the time the coffee was gone, I was ready to get back to work.

    The theory is: Coffee containing caffeine, actually works on nerve endings to calm them, which is why caffeine is used for migraine headaches. So, it must work for nerves that are rattled and frayed from other sources. This was discovered many decades ago, in treating Hyperactive children, it was found that a cup of coffee in the morning helped the kids to be more settled and attentive in school. My oldest son was one of them. He outgrew it, but is addicted to his big mug of morning coffee.

    Might be worth a try. Sit out in the garden or wherever is pleasant, with a mug of coffee and maybe a cookie, relax, don't think of the IHR thing, anything but that. See how that goes, after a couple days, you will be less frazzled, and will be addicted to coffee :P Big, long hugs from across the waters, hang in there , dear friend. L.

  • Wow would never have guessed that as I thought it would be a stimulant! Ok I will try it but due to horrid rain and flooding will have to be indoors at the moment in UK! Thanks for the idea, And also I have booked a holiday to Corfu in 2 weeks! I hope the heat will help and if I'm skint, I'm skint!!!! Hugs back A xx

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