Really concerned about my ability to work: Hi, I am 6... - NRAS

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Really concerned about my ability to work

hev53 profile image
hev53
ā€¢20 Replies

Hi, I am 62 and retired from nursing last year due to my RA, however a year on I am feeling a bit better and with meds feel I am ok. My meagre NHS pension needs topping up now in order for me to pay the bills so I have a nursing job two long days a week. 7.45 am to 20.30. They are not together. Yesterday I had to move a lot of furniture, wardrobes, beds etc with my partner but today I can barely walk! My feet, hands and especially my knees have been so painful. Went out to walk around some gardnes nearby and had to sit for most of the visit.

My fear is will I feel like this after working? Has anyone else tried to go back to work or have 'done too much' one day and suffered the next or am I just a wimp! Thank you for looking.

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hev53 profile image
hev53
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20 Replies
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Your condition will make you feel exhausted or tired , that is part of your condition.

You need to learn how to pace yourself or you will hurt yourself and that will be no good and you could hurt yourself.

Only you and your GP can really advise on what is possible and when push comes to shove it is you who knows what you can manage. Possibly talk to a RA nurse or specialist, Have words with an Occupational therapist if possible. It is important though that you pace yourself an understand your condition and failings. It is not worth pushing yourself as if you do that things can become more limiting

BOB

hev53 profile image
hev53ā€¢ in reply to

Thank you Bob. I just wondered if anyone had a similar experience. Appreciate your response.

Livingston profile image
Livingston

This is how the beastie works! Do too much and you will be made to suffer greatly. Don't do enough and you will also be made to suffer greatly. The real kicker is that what constitutes 'too much' and 'not enough' can vary from day to day.

Good luck with work - hope you manage to find a balance.

hev53 profile image
hev53ā€¢ in reply toLivingston

Bless you. You are so right! Finding the balance is the key. I am not good at that! Thank you for your reply. Helped a lot.

Livingston profile image
Livingstonā€¢ in reply tohev53

I was a nurse too - psychogeriatrics. I gave it up when we were pushed into long days - at that point I was really struggling with a 9 hour shift and I just knew that I couldn't do any more, especially since my shift was the one that was going to end up doing almost all of the heaviest work. It makes my blood boil when I think about how long the Mental Welfare Commission fought to get rid of long days in the first place - but that's a whole other story.

If work is the really important thing, then you're going to have to prioritise it and maybe let go of other things a bit - like housework. I just cling to the thought that the dust will still be here, long after we're all gone, so there's not much point in me spending time moving it around. :P

hev53 profile image
hev53ā€¢ in reply toLivingston

I know it is going to be hard at first but you are right to let other things go a little. I do push myself too hard and then regret it and feel sorry for myself! Thank you for your answer. xx

johnjohn profile image
johnjohn

Hi Returned to work after 6 months off practically bed ridden had no choice would of lost my house and daughter (no money no access ) I found it so hard and painful at first but what I've learnt is when you get home do nothing and I mean nothing just go to bed and rest ...it's so easy to get distracted and start cooking cleaning ect and that really can push you over the edge especially as it s very long days your working

Good luck

hev53 profile image
hev53ā€¢ in reply tojohnjohn

Thank you john john . Pacing yourself is the key. When you have been active and do everything for yourself all your life this disease is a bit of a life changer! Hope everything is working out for you. Take care.

flow4 profile image
flow4ā€¢ in reply tojohnjohn

John, just as an aside, I couldn't bear not to respond to your 'no money, no access' comment. The law is very, very, very clear that money and access rights are totally separate when it comes to children. It is absolutely crystal clear that your daughter has a right to a relationship with you, if she wants one, however poor you are. I know in some break-downs money becomes a real issue and can sometimes be used as a bit of a weapon by one partner against the other. If your RA leaves you unable to work, the maintenance awards can be re-assessed, but even if you are only able to pay a fiver a week, you can continue to see your daughter. I hope that knowing this is a bit of reassurance for you... You can get more advice from a family lawyer or Citizen's Advice.

Fra22-57 profile image
Fra22-57

If I try to do too much I am real bad next day feeling ill with it too. I try to push myself else I would never get out but my body makes me pay for it.I am 57 and would never be able to return to work which upsets me and cuts me off from society. Try shorter days first then build them up.Good luck.

hev53 profile image
hev53ā€¢ in reply toFra22-57

Thank you but unfortunately I cannot choose it's full days or nothing! fingers crossed and thank you for responding x

flow4 profile image
flow4

Hev, i am on several different online groups and boards, and it seems to me that the work nurses do is really, really hard. The days are long, the work is physically demanding, and you have to be on your feet all the time. I have lost count of how many nurses - and teachers too - I have seen post "I am findin work so hard - am I just pathetic?" So I don't think it's just you!

I know my body needs to change position often or I get exhausted and really hurt - sitting too long is painful, standing too long is impossible: I need to swap between the two, frequently. I don't know whether it's the same for you, but if it is, that might explain the trouble you're having, because I bet that isn't easy (or even possible) when you're nursing. If it isn't possible to make adjustments to your job, is it possible to change it completely, to one which is not so hard? If not, I think you have to use John's tactic, and just *do nothing* the days you are not working. It is so hard to find a solution that works for you... I hope you do it :)

Ali_H profile image
Ali_H

Hi Hev,

It's definitely a skill to be able to pace yourself and know when to delegate heavy work to someone who is more able to do that.

I can also say that having returned to full time teaching in March that communicating with my employer about how to help me keep 'fit for work' is paying dividends and they have changed my role to ease my paperwork load etc - without that I would not have made it through to the summer term without further sick leave... What I am saying is ensure your employer knows that an extra break in your long work day will be beneficial all round and it can be done as a 'reasonable adjustment'.

All the best

Ali

bevlin profile image
bevlin

I work as a childminder. I was diagnosed in 2002 and have been able to carry on working . All day Monday to Friday from 7.30 to 6pm. Have had different pInful joints/ swollen joints during this time but nothing that stopped me from working. September 2014 I decided to go part time, working before school drop off and then collecting at 3.15 and looking after children till 6pm. My RA flared up big time, I have been in agony and was seriously worried that I would have to stop work altogether. Well the summer holidays have come around so I've been working all day again and my RA is back to being at a level I can cope with, I'm walking better and the pain is bearable. I suppose what I'm trying to say is don't give up work, keep active, because the minute you start to ' take it easy' your body will seize up and you will go into major flare up. Im 58 and can see me working until I drop.......šŸ˜«

cathie profile image
cathie

Can you ease yourself in rather than do a long day? I used to teach and started my day around 8.15 but got away by 2 and went home to lie down for a couple of hours before going back to marking. is there a nursing equivalent? That was how I managed to pace myself.

hev53 profile image
hev53ā€¢ in reply tocathie

unfortunately no nursing equivalent although am sure if I speak with Occupational Health I could get the hours reduced if I cannot manage. I think this is a case of suck it and see. Thank you for answering xx

VickyBM profile image
VickyBM

Hi hev53,

I can empathise with you totally as i have struggled at times to manage how tired work makes me feel.

I work in an office environment and have recently reduced my hours from 40 to 36 through negotiation with my employer. Work makes me feel absolutely wiped out a lot of the time which does unfortunately mean that there are times when at least half of my weekend is taken up trying to recover to get back to work again on Monday.

I think the key is perhaps to pace yourself but for some - and I know this is true for me - it's not always possible when you have kids that need tea, cleaning up, running to clubs etc and it can kind of grate when you feel you miss out on other things such as not being able to totally enjoy your trip to the gardens.

Saying that though there is a need to work and so I try and reconcile it in my mind that I know I have to go to work and do try and make the best of it.

The two long days might make you tired but, saying that you have time in between to 'recover' and the knowledge that you are doing such a worthwhile job which I hope will keep you going through those days when you are feeling knackered.

I really hope you are able to balance the work, rest and social aspects and feel all the benefits it can bring.

Best wishes, Vicky

Heathersmum69 profile image
Heathersmum69

Hi hev53,

I am a Dental Nurse I work Tuesday,Wednesday and Thursday each week,and by Thursday afternoon I am exhausted. I know exactly how you feel . I have Seronnegative RA and I am being investigated for Spondylitis.

I think that because I have this disease ,I need to prove to myself and everyone that I can still do my job. I have been told by my loved ones that I need to pace myself. I certainly try to do that. I think it's because I don't like to fail myself and my team at work.

Pacing is the key to living with this disease . Learn to do that and you will be fine.

You certainly are not a wimp.

Don't be to hard on yourself.

Jane xx

hev53 profile image
hev53ā€¢ in reply toHeathersmum69

Bless you. I am hard on myself, my partner says it all the time! All of these comments have helped immensely. Thank you for taking the time. xx

hev53 profile image
hev53

Thank you all of you who replied. It has helped and I am so grateful for your time. I will let you know how it goes, in the meanitime working on myself to be a little more kinder to me! xxx

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