NRAS
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How do you manage it all?

I have so much going on at the moment - crazy work schedule, 2 different courses, setting up a business, AND trying to keep my health in check! I'm still an ambitious person but I can't seem to keep up now I've got RA. Frustrating! Can anyone relate?x

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I certainly can . I was diagnosed 3 years ago and my RA still isn't under control. I struggled on till August this year but finally admitted defeat when I didn't get any support from the company I worked for. I've worked full time all my life but the stress was really getting to me so I resigned and they didn't even ask why !

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I can relate to this, unfortunately! I'm a teacher, wife,mother, ect..ect...

I manage my stress through a mindfulness course, I've found it's so effective and beneficial to helping me keep a focused and clear mind. I wholeheartedly recommend it for anyone who wants a quieter mind 😀

Failing that there's always gentle crochet 😂😂😀

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I am currently going through diagnosis and glad I walked out of my job they were being awkward enough over my daughter (she has Down syndrome) so God knows how they would have treated me with this. And that is the wonderful NHS for you

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I am having to give up my job. Been there 17 years, 10 years with RA. Had to drop to part time for the last 5 years but even that is too much. You have to learn to pace yourself, rest when able. I understand how much you have going on but for you like the rest of us, we have had to learn to pace ourselves. Wish I could give you advice but unfortunately can't. You can't juggle everything and you will have to work out what you can let go. Hope you can work it out.

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Hi yeah i know where your coming from. Ive had RA now for approx 14 or 15yrs. Simply explained its bloody sore most days with the odd lovely reprieve. Im self employed me and my bro have our own building buisness so its fairly hard work but its positive thinking that keeps you going. My wife and i have our grandchildren living with us permanently ( family issues) and the kids are 14 and 9 so its a busy time and the RA is no respector of situations its just a relentless painful disease. Everything comes from the mind so good luck and stay in the game

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I can certainly relate!

I've only been diagnosed a couple of months ago so nowhere near under control yet. I was well respected at work and en route to senior management until this year when my health took a massive down turn. I'm now considered a 'serial sicky' and despite having years of no absence the company are not being very accommodating. I'm thinking of going backwards to a less stressful job rather than forwards.

There are days like today where even getting out of bed is a Herculean effort and I feel I just can't cope any more.

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That is so hard. It's bad enough to feel like they don't understand but to label you with something you don't deserve is unfair - and far to typical I'm afraid...

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Hi all,

just to let anyone who doesn't know, you are protected at work under the 2010 equality act which says that you cannot be discriminated against at work because of your disability. I have put a link below to our publication on work where you can read more about your rights:

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

Hope this is useful

Regards

Beverley (NRAS Helpline)

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If only it were that simple.... I successfully took a law firm to an Employment Tribunal. If solicitors don't take the law seriously .....

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No, it certainly isn't simple and we hear all the time on the helpline about employers flouting the law. Sad.

Beverley

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To the outsider, it looks as if disabled people are protected by the law and welfare system, but unfortunately many of us know that just isn't the case.

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We just have to keep pushing to change things.

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Thanks Beverley. I'll take a look. I even gave my line manager a copy of the nras literature for employers. However no adjustments have been discussed and when I asked to work from home as it was just a case my knees were too stiff and swollen to safely drove to work (which my old line manager used to allow when I was having a very bad day) I was told to call in sick! So this along with time off for shoulder surgery in August will bring me to a formal hearing for sickness absence :-(

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I have a busy family and work life too. Typical sandwich generation, elderly parents, a teenager and a husband although it has to be said they're mostly considerate when my RA dictates that I just can't do any more. I've had to learn to say no to things when I feel fatigue coming on, otherwise I know I'll be exhausted the next day.

I work full time in the NHS and since I was diagnosed with RA five years ago I have to say my employers have been fantastic. I even managed to get a promotion last March. I've had to go onto MTX 3 months ago as I was getting too many flares and disease progression and so far I've been fine on it. I do voluntary work for our local church too.

It is hard keeping all the plates spinning sometimes but people in my life have had to learn that occasionally I have to back out of things if it gets too much! You need to look after yourself too, easier said than done I know!

Ally x

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I think most people with RA are "type A go-getter" personalities (based on my completely unscientific study by observation!) :) I really think that RA is telling us that WE CAN'T DO AND BE EVERYTHING. I am still doing too much - I'm a Guide leader, a Scout leader, I have two boys (5 and 7), I work full-time... BUT I am teleworking 90% of the week (right now I go in approx 1 half day/week), the other Guide leader does pretty much everything and I get to pitch in where I want, and I have a wonderful hubby to help with the boys.

You need to focus on your health first, so if there's something you can drop or delegate, do it! It's hard to let go and let others jump in, particularly when you have "your" way of doing things, but yours isn't the only way and people will feel good knowing they're helping you. As you feel better you'll find yourself naturally taking on more again. As soon as it starts to compromise your health, ease off again.

You don't want to be in a position where you can't do anything at all for months because you couldn't offload or share a little bit of the work today. My flares are not 24 hours, they are 11 to 15 months, so I try to avoid them as much as possible! Do what YOU need to do, but like the 12 year old celiac who snuck cookies behind his mom's back, know that there are real consequences. We can be our own worst enemy!

Gentle hugs!!

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Hi Beautifulmovement, I suspect most of us can relate. But here's the thing... You can push yourself to far limits as often as you want or can, but you can actually damage your joints permanently a lot more by doing that. You may find like many of us did that it isn't worth it to do so. I had to cut back on almost everything at one point - writing, my home based business, my schooling. I ended up only doing the absolute minimum - caring for my husband, cat and house, and getting things for my mother in law as she required them, taking her to doctors, etc. Even that was almost too much, and I started sleeping long hours. I am now coming around the bend and I have been able to add back in the writing which is pretty exciting... Just think carefully about what you do. You are not in the same place as you were before...

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Hi Beautifulmovement. I agree, I too believe we can all relate. I was diagnosed six years ago, and didn't completely know or understand what my diagnosis meant. Even though I was in tremendous pain around the time of my diagnosis, I still wasn't quite clear about what RA was doing to my body or what it would do to my body. I had seen the pictures, read the material, but still couldn't completely relate. It wasn't until my first flare about 6 to 7 months after that I truly understood what my life with RA would be like. I couldn't get out of bed, I often times had to crawl or slide across the floor because walking was unbearable. I would come home from work, and by 7 o'clock I was asleep because I was just so tired. I woke up tired.

But I was determined to not let RA stop my life, and that's the kind of mantra that I still tell myself today. Fortunately my RA is fairly under control, but I still have bad days. I've learned to say no to things. It was hard at first, but it's really important to make sure that you're taking care of yourself. And that was something that was really hard to learn.

Also, I've learned to listen to my body. I have a very busy job, one that I love, and I've had to find balance. Right now it's just me and my husband, so that helps. I can focus on my job, and my husband is extremely supportive and understands why some days I just can't go. It's not easy, but it can be doable, listen to your body, and make sure you're taking care of yourself.

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