So I just thought I'd pick the brains of all you wiser RA comrades. My problem is the title of this post. How do I do it?. I am single so have no one to assist, I try to when I have energy bursts but those are few and far between.
Work life is hell too, I don't think my employers, my boss or work colleagues realise how much pain I am in trying to do my job.i think that they think I'm putting it on, as I look no different to how I did a year ago. I have had no reasonable adjustments or offer of redeployment. Supposed to have a meeting with HR last Wednesday and she didn't turn up.
So how do all you other manage, some advice would be much appreciated.
Do you receive any benefits ? PIP for example ? You could be eligible even though you work, the extra income could help with the cost of easily prepared foods and / or a cleaner / taxi costs?
It sounds as if you need to chase up HR, in writing , asking why they did not turn up too. Always insist on a written reply.
I have a claim in for pip just waiting for the assessment. I was going to email the HR person but couldn't remember her name. I also get reports from occupational therapy at work but my boss doesn't read them. I have contacted access to work and am waiting on a reply.
Although I am married, apart from food shopping, I mainly do the household chores, I can't do what I used to do, which is a hell of a lot, I really have had a lot of cleaning let slip, which does get to me, I am learning that if I can't do it, it'll have to wait, because I'm either in way too much pain with my hands, or I'm far too tired 😴 Escpecially after finishing a work shift,
Like you at work, employers and some colleagues just don't have a clue what pain we are going through, and the effect that it not only has on us physically, but our mental state too, I have suffered terribly at work, and found myself bursting in to tears every time I thought about my RA, when talking with anyone including HR,
Do you have a union where you work?? I work in a busy confectionery factory, so I am able to involve them!! I have also read a lot about our disease and how we are protected by the 2010 equality act, I have read a lot in those little nras brochure booklets, they are very good, there's one for "supporting an employee with RA" I took that into work and gave it to HR?? maybe you could do that too?? Do make sure that you speak with your HR, they have a legal duty of care to employees who are protected by the act, we are!! Have a look, you can then mention this to your HR, they should really already be aware of this!!
I wish you luck, I know what you are going through at work, I have experienced it for myself, it's still a daily battle,
I hope that has given you something to think 🤔 about, and how you can approach your HR!!
I'm not in a union and I do believe if I joined one now they wouldn't help with an existing issue. I have also given my employer the book and it's made no difference.
I do clean when I can, if I Hoover at 5am so be it or clean the bathroom before I go to work. Thank you for your reply.
If getting a cleaner isn’t an option consider taking a look at ‘the organised mum method’ on Instagram. I have issues with fatigue and pain, and used to feel so guilty about not getting things done, but this ‘system’ of working encourages you to tackle an area a day for a fixed time of 30 minutes. In addition you’re encouraged to do daily jobs as you go along, including putting washing on every day ( this is aimed at families, so you probably don’t need to do a load of laundry each day.). It has really helped me so much, mainly because I’ve stopped feeling guilty as I always try and get 30 mins done, and then I stop, I literally set a timer, and it’s quite amazing what can get done in that short time if you don’t let yourself be distracted. Some time, after work, I’m too exhausted to do it, and that’s also ok, I know that I have a system which will stop the whole house unravelling. Best wishes, it’s so hard to deal with such tiredness and pain.
I have one little tip to offer which i hope may be of use to you.
I found out that ironing my clothes was becoming impossible and keeping business wear looking smart and crisp was failing rapidly as i could no longer lift an iron! Rofl. The answer for me was to buy a steamer like the ones the shops use in the back to take the creases out of clothes? Mine has a stand that i hang the garment on and a long hose connected to a water tank at the base of the unit and all i do is sit on the edge of the bed and use the hand nozzle (a bit like a small vacuum cleaner head) to pass slowly up and down the garment and all the creases fall out. Brilliant! It’s quick and pain free and i could even freshen up a jacket to last another day if i needed to which was so helpful for my job. Although i have not worked now for twenty years i still have my trusty steamer and use it nearly daily to make my clothes look and smell nice as i often use fragranced water in the tank and i always feel smart and clean.
I know this is just one small part of your problem but it really has made such a difference to me that i thought it well worth suggesting to you.
Ask HR again. I don’t know what your work is, but would flexible hours help, or can you work from home? I’m on my own and I do have a cleaner. It’s the best money I spend. I have a couple of hours every other week and I find that’s enough.
I can’t help you with PIP info as I’ve never attempted to claim anything. I hope you manage to sort something out.
It will depend on your job as to what adjustments can be made for you but that's what an OT is for. If it's office based it should be fairly straight forward. I was fortunate and was pretty much allowed to suggest what I needed and it was done, nothing expensive. The only exception was my suggestion of a 'fireman's pole' instead of having to use the stairs to get down!! On a serious note, with regard to home life, you do what you can when you can. The biggest problem I find is to accept that I can't do it all. Very frustrating when you're used to doing everything yourself. If you can get any financial assistant maybe a cleaner when needed. For shopping, I use on-line every couple of weeks to buy main items and just pick up odds and ends locally. Takes a while to get your head around things. Good luck and I hope work listen to you.
I can't do my job from home as I'm a chef. I really struggle and it's incredibly painful but I do it because I have to. I have no issue with acceptance or guilt just fed up of dust and dirt everywhere. I do shop online and am grateful it exists or if be starving too lol.
Only you know what adjustments might help you at work i.e opportunities to sit at times. Hopefully HR & OT will have some ideas to help. As for dust, it won't go far so try to not worry about it. Good luck
No friends, long story and my mum does help with my garden but she won't be able to do that as she has her own health issues. I do see occy health regularly, reports get sent to my boss and he doesn't read them.
Think about claiming the Disability Element of Working Tax Credit , from HMRC , to make up your hours if having to reduce / go part - time , no medical assessment required !
Hi Again- I’ve just been on Entitiledto.co.uk - then go to WTC Disadvantage Test ; “ If one satisfy the rules for Disability Element in your working tax credit, an additional £ 3,165 ( from April 2019 ), will be included in your maximum tax credit award “. Hope this helps.
Like I said, I'm entitled to £0.00, I checked too. Even with my wages dropping because I had 4 months off on sick leave, it makes no difference, I still get nothing.
My Roomba does a better job of vacuuming than any of my hand-held vacuum cleaners. So that cuts down on the time you spend doing it. I also tend only to wear clothes that don't need ironing and I leave dishes and cookware to soak, but I do clear up as I go along. My partner doesn't, and leaves piles of stuff for me to clean up. If you are on your own, you have more control, and the dust will still be there tomorrow! I try and do one thing a day. It usually works out more than that but I believe it's possible to get to grips with this problem.
I would suggest keeping a record of every discussion you have with your employers regarding your problems, every appointment they cancel or miss, and any other information relating to their failure to deal with your obvious problems. Employers do have a legal obligation to make reasonable provision for people with chronic health problems. I would also consider taking advice from Citizens Advice or a similar organisation. I know that nobody wants to start bringing up legal responsibilities with their employer but it's clear from your post that you current situation is unsustainable. Good luck for the future.
I have letters that have been sent to me from my boss and occy health. I haven't got anything from the 2 meetings I've had with HR, I can't take notes as writing is difficult but will ask in when I have the next meeting if I can record it. I have sought advice from both CAB and Acas and they pretty much said the same thing. I think my only option at present is to go back on sick leave and email my boss and HR and tell them I am unable to be at work until suitable redeployment is sought. I am in so much pain it's affecting my sleep, my mental health and everything else.
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