Hi everyone. After 4 years of denial and thinking I could beat RA and a thyroid problem, (which ultimately ended in a serious and complete and utter 'meltdown' last December), I've finally decided to work with my disease, join NRAS and start facing up to the challenges I'm going to need to deal with for the rest of my life.

Being diagnosed with RA when I was 45, was an utter blow. Two years before I had been diagnosed with an under-active thyroid. At the time of diagnosis, life was just brilliant - I was (and still am) a Headteacher of a large primary school, engaged and working with a number of other schools in challenging circumstances, significantly involved in a number of national educational projects, a mother of two fabulous and very lively girls and wife to a supportive but very busy company director. The initial onset of RA was rapid. What started in September as a very dry mouth, painful feet and hands, by December had turned into 'couldn't bear to be touched' because of the excruciating pain and barely being able to walk. My GP at point of diagnosis was amazing and the team of professionals I have encountered over the years inspirational. Prompt initial action meant that joint damage was kept to a minimum, but losing 3 stone in weight in a very short period of time, frightening and upsetting for those around me. Up until recently I've just fought the RA every step of the way, determined to continue as normal and not allowing myself to listen to what my body is trying to scream at me!

Now, I'm at maximum dosage for Methotrexate and Hydroxychloroquine (having also been on Leflunomide and Sulphasalzine). Tomorrow I am off to learn how to self-inject the Methotrexate, but I'm now very anxious about the future. I'm still not back at work full time and when I am only managing around a quarter of what I used to. The fatigue gets to me most, which tends to also result in poor concentration and mental agility! Joint pain is variable - but now I keep a diary, pain and flares appear clearly and directly linked to what I try and cram into my days and how much stress I feel. I do keep fit - the hours in the gym, when I'm moving are the most pain-free times I have.

I believe I'm at a cross-roads and would appreciate any support and guidance at this difficult time. I know I probably need to make some significant changes to my life, but emotionally I'm finding the prospect pretty tricky. I've read some of your posts and I'm truly looking forward to thrashing this through with people who understand what I'm going through and have experience of how they manage this challenging disease.

Hi Maxine (Max?)

Welcome to the forum. Best thing about this place? There's someone else out there that has probably been where you are, and a ton of people who can empathise.

hi Maxine,

welcome aboard.

you have a very demanding job to cope with and it's no wonder fatigue plays a big part with your RA. ( that's the worst thing for me these days, but i am not a great sleeper which doesn't help )

when i was first diagnosed, well in the first week i lost over half a stone with the stress of it all. i was eating it was pure fear and stress, i was diagnosed three years ago now .. and was initially on Methotrexate and then added Hydroxy six months later, but unfortunately this combination didn't work for me. i then had a long wait for funding approval from my PCT to start on Humira .. which i finally started in August 2011, and that has worked it's magic for me along with the above drugs as well.

my RA was general aches and pains, mostly in my shoulders .. but then i do have awful Osteo in both knee's. but i have a fantastic GP who picked up my RA quickly and am now under the care of a great Rheumatology Department.

my working days are long gone so i don't have that to worry about, but the first thing that was said when i joined the forum was learn to pace yourself, which i expect you would find difficult with your job and family.

my daughter has long flown the nest, so it's just me and my hubby at home who is my rock.

do let us know how you are going on and hopefully there will be someone here to help or listen,

i also found the NRAS Helpline a great support when i was first diagnosed, so perhaps you could give them a call with any concerns.

Suzanne

Hi Maxine, I’m presuming from your forum name it is Maxine, or might be Max? Welcome to the forum, and you are right there are challenges to be dealt with, but once the correct combination of drugs are found life can be a whole lot easier, even down to the fatigue. Therefore it might be that biologics are another step for you that may help you to stay at work longer.

You are right about stress, for me that does impact upon my joints.
I’ve had RA for about 6 years. Mine started after I gave up teaching, (I was also head of a primary school with a special unit) I had gradually fallen out of love with the job as the demands for achievement and those precious results at any cost grew greater, I saved hard for two years, handed my notice in and went back to college onto to a creative arts course starting right at the bottom again and I loved every minute of it and still do.
I sometimes work very long days but working for me, if I need to, I can put my head down to sleep for an hour. I am cautious of trade events because of standing for periods and the unloading etc but take a friend with me who helps. I often wonder if it was the stress of the job or the leaving it all behind that bought on the RA.

It’s a very difficult position especially if you love the job you do but wonder how long you will be able to do it for, many on this forum have said it’s a relief not to have to fight your body and make it work long hours every day, but we all have different circumstances, so could you perhaps job share? It wasn’t something I would have considered but then me I‘m a bit of a control freak.

Emotionally it is hard to make a decision that could be life changing, especially if it also financially changing, for this part all I can add is there is a life outside of your current job. A few heads I know have done consultancy work since leaving which has meant they’ve been able to concentrate on one or two things at the pace they want without all the everyday stuff pushing them to the limit.

Four years is a long time to have been fighting the RA, perhaps it is time to work with it now , sometimes if you listen to it and treat it gently for a couple of days it does give you a good weekend.

With best wishes
Sheila

Hi Maxine,
I was diagnosed at 40 after two years or so experiencing intermittant probs with wrists, ankles and most other parts of my body, i too ended up unable to move and the prognosis from my GP was that i could expect to work less often in the future than i did in the past. This was not an option i was prepared to accept but nethertheless i explained to my boss the situation and he was prepared to offer any assistance in my future with the company. Im a sheetmetal worker making, delivering and installing airconditioning ducting, which is a very strenuous physical job focusing on hand skills, so you can imagine the problems i would need to overcome. Initially when i was going through the worst part of the disease my boss tried to give me an office position estimating, but i found the more i sat the worse i felt when i needed to stand again, after a few weeks i returned to the shop floor and began to do what i could and surprisingly, with some imaginative adjustments i was able to carry on as i did before. Nine years on, my advice is, tell people about your condition but don't expect them to remember, you will be the only person with the condition in your fore thought, try to live in the moment. sometimes i return from work and after sitting down in the evening i need to slowly limp upstairs, struggle to get into the bath, struggle to get out again, fall into bed, wake in the morning struggle to shower dress and even hold a bowl of cornflakes, then drive to work, on arrival i limber up and do what i can, sometimes ill ask for assistance but usually i put off the most strenuous stuff until as late as possible, so i can deal with the pain at home, this can go on for days and is the worst case scenario but the alternative is, i feel rough, ill stay at home tomorrow, ill stay in bed longer, sit by the telly, swell up, get fluid build up on the knees, earn no money and wind the mrs up. Over the long term the majority of the time, once a drug is found that suits your personal condition, you can expect to lead a normal life, this is when everyone forgets, so nowadays when the pains start niggling i mention to a colleague, my elbow is hurting i must of knocked it somewhere, this usually starts an onslaught of aches and pains that they've got.
Ive been at a crossroads for the last nine years and will probably still be there for the next ten, and long may it last, if you adjust how you operate, try to keep on the move and only give in on the odd occassion the future can be as rosy today as it was yesterday.
steve

Hi Steve - I've found your story inspirational and I'm full of respect for how you face your illness. You are so right that RA means making adjustments and tackling work differently, and a positive can do / want to do attitude really helps in the longer term.

I've gone back to work and I love it! I can now do most of the things that I've always done, but not at the same pace! I've learnt to take rests if my body demands it and most especially to move about and do lots of very gentle exercise (tai chi is my favorite) - I don't Keep Fit but I do keep moving, and as a result I feel generally heaps better than if I sit around. My work is mainly at the computer, and as you said, all the joints seize up if I just sit there - so I am constantly moving and arrange my work so I have to stretch my arms and frequently get up and move about - of course it means that a typical task takes a bit longer but I make up for it by being more organised and efficient! I've been doing just 3 days a week, but I'd like to do more - and my boss wants me to do more, so if she can find the budget I'll go full time - fingers crossed!

The other wierd thing about having this illness is that I'm much better at prioritising now than I used to be - I used to fret and get stressed about stuff and try to do everything myself, but now I look at things differently and consider if it's actually that important or if it can be achieved with less effort. I agree with what you said about telling people about your condition - I do and I've found people very supportive because they can see that I'm doing what I can to help myself, even though I often ask for help doing heavy stuff.

Anyway - best wishes to you and also to Maxine who started this thread. Sylvia xxx