How many work?

[Maud1970]

Good morning all , am worrying about my job and my ill health and am wondering how many of you work full time? I have RA fibro and am currently off work having a major flare I think due to troche bursitis in hips. Just had sterroid injections. (Not sure this has helped) I am getting more & more worried about how much longer I can work. This stress adds to my ill health . Any replies would be much appreciated

[Hidden]

Prsonally I do not know how too sweeten the way for you.

I was medically retired from a very good job a long time ago and now use all the coping skills that were explained to me so long ago.

One thing you can try, in fact you will need to try is to CONTROL your medications as lean as possible and understand you will have to suffer some pain most of the time. Therefore you will need to have a course at the pain Clinic.

I do not know if you have tried DMARD or BIOLOGIC medications yet. ??.

With regard your work a balance of medications will be needed so you can do your work, although hopefully

this may not be a problem.

Although in the 80s, a long time ago attitudes to disabled was very negative and what I have seen on the News this has still been passed down by parties that should know better as it is still a political hot potato.

Fight for as long as you can with your work, have words with your GP and explain your situation, They may arrange a visit from a OC Therapist and also you could visit the Job Centre, they will give an appointment with their Disability Officer, who can possibly intercede with your employer and supply tools to make your work easier. Also if needed you can contact your Union who can also intercede if your employer wants to get rid of you.

Sometimes with a little instruction and aids supplied your work place can be adapted around you at very little cost. Of course it also depends on the type of work you do. Although if they want you out, they will manage somehow.

One way forward is discuss with your Employer a different post you can manage to do, sometimes that can help. Hopefully with above there could be outlets that may help You and Company. Try and be positive in your outlook and try not to worry until these problems arise

Good Luck

BOB

[Beverley-NRAS]

hi Maud1970,

sorry to hear that you are going through a bit of a rough patch at the moment. If you would like to talk about your situation at work and what help there may be out there for you please do not hesitate to contact the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

In the meantime I have put a link to our publication on work for you to look at. You are covered under the 2010 Equality Act which is there to protect you against discrimination based on your disability and it gives information about who there is to help you at work:

nras.org.uk/publications/i-...

hope this helps

Beverley (NRAS Helpline)

[heathersmum]

Hi Maud,

I have just been diagnosed with RA and today I start my Methotrexate meds. I am not working at the moment due to very bad flares . I am the same as you.I want to work but I am worried that the side effects will stop me working. I am a Dental Nurse and I am afraid of letting anyone down.

My last employer was so nasty to me I left in tears .

Any replies on how to handle work and medication would be appreciated.

[Karen77]

I was on maternity leave when I was first diagnosed. I naively believed that once I started MTX I would get better so I went back to work at the end of my maternity leave while still uncontrolled. It is office work and involved a 1 hour commute (each way) and I had two boys aged 1 and 2 1/2 at home to care for. Even as my MTX was increased every 6 weeks, my symptoms worsened. Finally, after 4 months of this, I took 3 months sick leave. During that time I started Humira, which made a huge positive difference. However, after a year of feeling great, I developed a new flare which lasted about a year. About 7 months into that flare, I had a detailed conversation with my manager and director about RA. I mostly focused on what were my current symptoms, the unknowns with respect to both the effects of the medications and possible disease progression, and made sure they understood how important it is for me to continue working. They appreciated my honesty and agreed for me to telework 4 of 5 days per week. This allows me to spend more time with the kids, have my slow mornings without the added stress of the commute, and be closer to all of my appointments so I am less absent from work. I am doing great with this arrangement, and finally feel like my RA is under control. I will keep up this arrangement as long as I can. Best of luck to you.

[Someonesmother]

Hi Maud

I work full time but I think sometimes it is more presenteism than work as I feel so bad, fatigued and the pain is so bad I cannot concentrate on what I am supposed to be doing. I have an administrative job, but even sitting is an agony. I am finding myself taking some days off on the odd week here and there, as my disease has not yet been managed in nearly three years, just so I can make it through the week. I am sure my work is noticing as it is becoming more prevalent and I am sure someone will pull me up eventually but I would think that they would rather I work than be living on the disability pension, which i probably wouldn't get anyway. I spend the weekends resting so I can then go to work for the week. It really isn't much of a life but at least I am still alive and living independently.

[Mary2G]

Hi Maud, I have RA and have worked full time for a large communications company for 27 years (I'm 54). I developed RA two years before I joined them so they knew I had the condition when they took me on. I've only ever taken off 3 weeks due to the RA but have had a few flare ups over the years which have made working difficult at times. I became a home worker about 5 years ago because I couldn't cope with travelling into London every day, this works well for me but in truth I now work harder and longer hours than I've ever done - if you're away from your desk in an office no-one bats an eyelid but if you're away from your desk getting a drink or popping to the loo at home they all seem to think that you're sunbathing in the garden.

Bosses and jobs have changed over the years and some have been better than others. Their reaction to my most recent flare up lead me to contact the Union for advice and support. I have to say that they were wonderful and totally incensed at how I was being treated. As a result of their advice I underwent a health assessment which I thought was to assess how they could help me but which I later found out was to see whether I was fit to work and whether they could get rid of me on medical retirement. Thankfully the Doctor advised that I was perfectly able to do my current job, that I would be considered as being covered by the Disability Discrimination Act (DDA) and that I should be provided with reasonable adjustments to enable me to do my work.

The process was stressful but worth it as the DDA gives me some protection from being picked on and forced out of the company as result of my health. I know that that's the reason it's there but I still felt like I was 'playing' the system even though it was for legitimate reasons. But I work hard and am good at my job and as long as that remains the case and I feel able to do my job I have no intention of being forced out against my will.

You didn't say what kind of work you do or how long you've worked for your company. Are you a member of a union? If so, I would suggest that you discuss your concerns with them unofficially if you can for starters. They may be able to advise whether there is any kind of health assessment that could help you and what the potential outcomes might be. Obviously if you feel that your health might be against you you may not want to go down that route even if it is available but you need to know what your options are and what support, legal and otherwise, are available to you.

You're in a difficult and stressful situation which sadly affects many people with chronic conditions over time and we need to support each other as much as possible.

Please keep us posted.

Take care,

Mary

[Patsy-57]

I am working full time at the present but feel guilty sometimes as my RA fluctuates so much. Some days pain, some stiffness and nearly everyday recently fatigue. I like you think how long should I or how long can I carry on. I do enjoy working but my home life suffers. If I didn't have school holidays I think I would have given up working long ago.

Patsy-57

[Maud1970]

Thanks all for your advice and support. Makes me realise I'm not alone 😘

[KylaC]

Hi, I too work full time and am 44. Luckily I work for a large organisation and in an office job. I have only taken a few weeks off for RA over the past 4 years (not including the two months following surgery) and find fatigue and flares the most difficult to manage. Trying to get staff and managers to understand these is hard as its invisible. The leaflet that talks about a RA member of staff from an employers point of view was most helpful from me and I also contacted Access To Work they will look to fund (depending on price and company size) adjustments that you may need.

I also am lucky to be able to work from home regular as this helps me manage it. You are definitely not alone, good luck and I can recommend the NRAS helpline too.

Kyla

[bigcatlover]

Hi Maud1970

I'm 42 and work full-time. i was diagnosed with RA 11 years ago and have had problems with my supposedly equal opportunities employer. Occ Health have recommended that I work from home 1 day a week and they are fighting me on it. It's still in limbo at the moment.

As far as meds go I found side effects with most of them and made the decision to stop taking them in November 2014 and touch wood I haven't had a flare up. I manage my condition by keeping my weight low and eating healthily as well as going swimming and sitting in a hydrotherapy spa pool 3 times a week. It's a very personal decision as to whether you choose medication or alternative treatment, but this works for me.

As for work, keep fighting and keep a log of every meeting you have and if any snide comments are made. if you ever do decide to go down the tribunal route those things will help your case.

Good luck