Working with r a: Hi everyone I am struggling with my... - NRAS

NRAS

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Working with r a

Babybaps44 profile image

Hi everyone

I am struggling with my feet alot now I don't want give up my job but may have to I'm thinking of trying to set up a little business or find another easier job.

What do people do for work with this condition

Thanks Mandy

26 Replies

I was dx. as a child, so knew I couldn't do a job involving lots of standing or walking. I was a legal secretary and loved it but was forced to retire after my cervical spine required decompressing and fixing.

🦶 feet just know where your coming from . I work in a primary school and it was torture. I’ve worked really hard on my feet. I do physio , use a shiatsu massager , soak and use ice and have insoles ,a brilliant podiatrist and of course the right medication . It’s taken me 3 years but now I’m walking unaided and can get through a working day with relatively little problems. Just have pain morning and night . Stiffness is always lurking but I’m in a better place as long as I do the above. It’s a full time job in its self.

Moomin8 profile image
Moomin8 in reply to J1707

I am still at the point where I can hardly stand or work...and also work in a Primary school.

J1707 profile image
J1707 in reply to Moomin8

Have you got orthotics? I was on crutches it was so bad but orthotics and the right medication means I can work without pain now . Never thought it could happen

Moomin8 profile image
Moomin8 in reply to J1707

Yes, I do have orthotics, but I'm not a all great atm 😏

J1707 profile image
J1707 in reply to Moomin8

Shouldn’t have to suffer have had any luck with your Rheumy department?

Moomin8 profile image
Moomin8 in reply to J1707

No and yes. Started Rituximab (Rixathon) 24th May - 2nd infusion 2 weeks later. I've been flaring for ova year 😭

J1707 profile image
J1707 in reply to Moomin8

Poor you . It’s taken me over 3 years. The last two weeks have been brilliant. Not pre RA but if I keep improving it will be a bonus. Like you thought I would have to stop working. I’m unrecognisable compared to this time last year. Hang on in there . Are you on steroids?

Moomin8 profile image
Moomin8 in reply to J1707

I've been on and off steroids since the beginning - 6 years ago. I've been through 3 biologics too. I'm on MTX (Metoject 20mg) sulphasalazine and Rituximab. I also take paracetamol 4 times a day and etoricoxib 90mg daily. I'm take other meds, like most of us to counteract side-effects. I tend to take courses if steroids or steroid injections. I can't afford to stop work, unfortunately.

J1707 profile image
J1707 in reply to Moomin8

I know exactly what you mean. Do you see a podiatrist regular. Sorry for the inquisition

Moomin8 profile image
Moomin8 in reply to J1707

😊Thank you for showing interest! I asked to go a few years back due to sore feet - nothing as horrendous as now. My rheumatologist sent me to have inserts made. I only go about once a year, when they get worn out. That's the only intervention I get apart from rheumatology visits.

J1707 profile image
J1707 in reply to Moomin8

If you can afford it see a private podiatrist it was the best thing I did . He did so many tests and videoed my walking and made a slim orthotic that feet’s all my shoes. Also gave me exercises. It truly has made a difference. If you do go down this route research and check reviews. Hope this helps . There is nothing worse than painful feet they are used for everything. X

Moomin8 profile image
Moomin8 in reply to J1707

Thank you 😊I'll look into the costs.

Moomin8 profile image
Moomin8 in reply to J1707

I have asked my clinical nurse to get me referred to a podiatrist 🤞

J1707 profile image
J1707 in reply to Moomin8

Good but check the waiting list . It was 2years for me. It’s a start x

Hi, I work in a coffee shop/restaurant and am really suffering with my feet/ankles/knee and hip. I'm currently off sick as I really can't cope with the pain and sickness. I'm at a loss of what I can do instead. There is nothing about that fits in with caring for my disabled son . I don't qualify for sick pay so need to find something but retraining isn't an option due to brain fog from meds and menopause, I can't even remember to take my insulin half the time. I hope you find something soon. Good luck.

Hi lots reduce hours ,and do less walking and paceing to help them get through job ,

Lots also go for pip benefit

And apply for only the mobility part

To try get passes etc and a car or money to help you lead independence and reduce pain on the mobility

I think you’d get thousands of different answers to that question as we are all affected differently. A job that suits one person would cause another difficulties. Has your employer made any adjustments to enable you to carry on at work? This publication might help if they haven’t

nras.org.uk/product/i-want-...

I work in IT. And while there is no standing I get terrible pain and swelling in my arms, hands, wrists, fingers, elbows.

I don't think there is a perfect job. Unless you can get paid for thinking...

Don't forget that you don't get sick pay when you are self-employed!

I've been self-employed for many years and although it does mean that I get no sick pay or holiday pay, it does give me the freedom to choose what I do and when.

As I was diagnosed at 59, I was less dependent on my earnings (mortgage paid off thankfully) so I didn't work much at all in the first few months which gave me the space to come to terms with things.

Now that I'm relatively stable on medication, I'm working more again but still being quite selective about it. I was able to make some adjustments like sitting down to do things which I previously stood up for and bought some lighter equipment which was better for my hands and wrist. I often accept lifts now whereas previously I chose to be the driver whenever possible and I factor in free/quieter days/later starts after particularly challenging days.

I'm well aware how lucky I am to be in this position but I have to say that I've come to realise that I can manage on less money more easily than I would have thought.

Have you been able to talk to your rheumy about whether you can expect improvements, and if so what is the plan to make this happen? And what kind of self-help might be useful? Have you been referred to podiatry and physio?

To me the first priority is to get the disease as well controlled as it can possibly be, and make sure you are doing as much as you can to help too.

Also talk to your employer about reasonable adjustments to make things more manageable for you.

I am formally retired, but I do still work as I find it’s important to me to have an activity. And I’m pretty active as luckily my disease is well controlled now. We run our own small business. But that was a lot of effort for first years. You need to have a clear idea and a solid business plan to have a good chance of making money, so it’s not necessarily an easier option.

I work in a hospital as an eye clinic liaison officer. I have not been in my office since March 2020 though and currently working from home.

My employer has provided me with an ergonomic keyboard, mouse, wrist support and dragon dictate software.

We are starting to have conversations about how I may return to the the hospital setting in the coming months.

I had a one to one meeting with my manager today on teams and I told him my concerns about my work performance and being able to go back to work and don’t want to be a burden to the team. I was honestly thinking before this conversation today that it would be best if I left and focused on getting my RA and Lupus more under control.

My RA is not fully controlled as yet as trying to find the right combinations of meds. I also have Lupus so have been pretty unwell this last year. Everyone on this amazing forum has been with me throughout it all.

My employer allows me to work flexible hours too at the moment. It has taken me a good year to build this relationship up with my current manager and be open and honest about how I am feeling about going back to work in the next couple of months.

All sorts of factors need to think about. Getting to and from work and being able to do my job role when back in work. I work in a really big hospital and I know right now I just won’t be able to walk to and from all the clinics etc and deal with the fast pace as my body won’t allow me to but neither will my brain. Both physically and mentally fatigued right now.

I have access to work in place so will be able to get taxis to and from work and today we discussed whether I would have the option of me going to one of the small satellite sites where it is a small team and supportive team where I have previously worked and not so much walking about, to work at my pace and only go into the hospital two or three days at the most to see patients face to face on reduced working days to factor in my commuting too.

It has been so hard to come to this decision but it has taken such a lot of pressure off me as I can work within a team who I know will support me. My manager openly admits that I am the one member of staff he has with such specialist knowledge that they will do all they can to support me to keep working for as long as I can and want to. Two hours after that conversation my manager rings me to say my colleague who works part time would be more than happy to go into the busy hospital and swap with me and HR have agreed it all too. Takes a huge weight off my mind. No dates for returning as won’t be until social distancing rules have been ease a little more but I no longer have to worry about how I am going to keep up with the work and handle being back in a busy hospital . I can rebuild my confidence in my own time and work with the team and HR to see if we can find a solution going forward that works for the service, patients and my team and me.

I appreciate how lucky I am to have such a supportive employer and have access to work in place too but just wanted to share my journey so far to hopefully give you some ideas about what’s out there and what may be possible.

Pre RA I was working 40 hour weeks plus some and thrived on the manic busy environment but right now I need to take a step back and have the time and flexibility to learn what I can do now as things are with my health with the hope that in the future with my RA and Lupus becoming well controlled and the right combination of meds I will be able to go back into the really busy hospital environment.

There are many options and speaking with NRAS too is a great option as they supported me through my occupational health assessment to being able to communicate how my RA impacts on me in a way that my employers could support me.

So sorry for the war and peace answer. 🤣.

J1707 profile image
J1707 in reply to Summerrain14

Oh you have a brilliant supportive manager . That will take the stress away and you can concentrate on getting well .. about time something good happened x

Summerrain14 profile image
Summerrain14 in reply to J1707

Thanks lovely. It’s taken some work on both mine and my managers side but we do have a good working relationship now for sure. It has definitely taken a lot of stress away as it was lingering there in the back of my mind. Who knows what the future holds but having options makes it so much brighter for me. x

I feel your pain 😞

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