Good afternoon everyone.....

[sandie2255]

I hope this finds you all well and rested on this cold dreary Sunday.

My name is Sandie and I have been stalking the site for a few weeks now. I am 48 years old with RA, diabetes, ibs and a few other bits and bobs!

I was diagnosed in April of this year after a couple of years of continous pain in my hands and wrists. Two carpal tunnel ops later and still no better so was referred finally to a rheumatologist and the rest is history! Am on Methotrexate injections and Planequil, along with insulin and anti depressants and statins and painkillers....etc etc

I have found such warmth and humour on here and it is making life a little more bearable at the moment knowing there are people who know exactly how I am feeling. I am a single mum of a wonderful 21 year old daughter who lives at home with me but I am feeling extremely worried that I am putting too much on her at the moment and so I am tending to keep quiet about the pain I am in but its beginning to take its toll on me.

I work full time in a very busy subscriptions office and work shifts - 4 days on, 4 off, 2 on and 2 off. Today is the 2nd day of a 4 day shift and I am feeeling exhausted already. The hours are 7.30am to 6pm and an hours drive each way. I really am struggling but dont know what to do as there is no one else to pay the mortgage etc. I was made redundant 2 years ago after working for Shell for 25 years - if only this had reared its ugly head then, I would have been ok with sick pay etc but I currently dont get sick pay as I need to have been here for a year first!

Anyway, thats enough moaning, just wanted to say hi and will be around asking probably really daft questions now and again, but I know you will all be gently with me!!

Have a fab day,

Sandie x

[sylvi]

Welcome sandie,you sound like a lovely lady. You have found the funniest,friendliest and most supportive group going. They are always there for each other and we don't judge which is a good thing.We share the highs and the lows. We have a laugh and a cry too

So welcome i look forward to hearing from you some more. sylvi.xxx

[sandie2255 in reply to sylvi]

Hi Sylvi,

thank you for your lovely warm welcome.....I really enjoying reading your blogs and so feel for you when you are in pain. Hope today is bright and wonderful for you. Take care, xx

[shirlthegirl]

Hi Sandie just like to say welcome to this wonderfull site, I'm Shirley i have been diagnosed by my doctor in early september and have a appointment on the 14th November to see a rehumatioist,

Can't wait to get confirmation so that I can start my meds and hopefully returrn to work,

I'm new to this site and it has been a great comfort to me, I also understand how u feel about putting to much on your family, i have a 14 year old, it can be really upsetting for them to see their mum upset and worried.

Take care Xx

[sandie2255 in reply to shirlthegirl]

Thank you for your kind words. Although we try to shield our choldren sometimes we just dont have the energy left to do it. My daughter is understanding but I just hate to feel negative all the time. So I am very good at painting the smile on my face every morning and wiping it off last thing at night!!

Have a great day, xx

[Hidden]

Hi Sandie - welcome to this site. Hope you get something sorted with your work - it sounds relentless and stress can't be helping much either. I don't have diabetes but am hypothyroid - lots of people here have several conditions so join the club and hang around to give and received lots of sympathy and support from everyone. Tida

[sandie2255 in reply to Hidden]

Thanks Tilda, again, I love to read your blogs and i gain so much from them. Its a learning curve which I feel I am at the very beginning of but I will get there, kicking and screaming and making a right old nusiance of myself no doubt!!!

Have a wonderful day.

[elrose]

Greetings, am an old hand, diagnosed 16yrs ago now. Having not been diagnosed that long it is my hope for you that your combi of meds (RA specifically not the rest of the pharmacy lol) wont take that long to affect some positives for you. Think carefully about anything that could help you at work (Equality Act binds them to make reasonable adjustments for conditions) also think about how you do stuff at home, mebbe invest in some simple aids (jar opener, that sort of thing) and if your tired...rest (sounds simple doesnt it?). I work full time (tho not with a shift pattern like that, more your 9 to 5'er) and am the mother of a 7 and a 4 year old - it can be done. Good luck and God Bless, Linda x

[sandie2255 in reply to elrose]

thanks Linda,

I have told my employer now and they have been very good but I still cant get sick pay till the end of January next year. But thats ok, I will keep on going!! lol. Thanks for the advise re gadgets at home. Will look into this and see what would help. My daughter is learning to drive so she can help with the driving as we work together so that should help.

Have a lovely day, xx

[Hidden]

Hi. Welcome to our site.You will find us all very helpful, even if we can't answer your query we'll give you some cyber hugs and hopefully someone will come on and be of help to you.

Cheers Carolyn

[sandie2255 in reply to Hidden]

thanks Carolyn,

big hugs back to you......

[cathie]

Welcome. Can you arrange to take rests during the working day? Any chance of a lift home even occasionally? I hope you find things a little easier

Xxx

[sandie2255 in reply to cathie]

Hi Cathie,

We get a10 min break in the morning and afternoon and a 50 min lunch break......and my daughter is elr ni ng to drive which should help in the long run as we work together!

Take care, xx

[cathie in reply to sandie2255]

Its good about your daughter driving. Its great to have support from family.

But the breaks may not be enough. One of the main things we all say to one another about managing RA is to pace ourselves. I can get through quite a bit if I can sit down for just a few minutes between tasks, or do some in a comfortable way. Is there any way you can negotiate something like that - as in feather's suggestion?

[sandie2255 in reply to cathie]

I may try to do something Cathie as I find that even though its nice having 4 days off, I spend most of it sleeping as I am so exhaused after working 4 days on. And I do understand from reading the blogs on here that it is best to do things at a gently pace rather than cram it all into a short space of time!

I think it may soon be time for me to look for another job but as it seems apparent that employers are not too keen to take on employees with RA (and I know they shoulnnt discriminate but they do), I am not feeling very hopeful about it.

Will try and speak to my HR department in the next few weeks and see what I can suggest to them,

Take care, x

[elrose in reply to sandie2255]

I am not particularly clear on what your job entails but by 'adjustments' I didnt particularly mean time off. If it involves a lot of typing there is software for voice typing (for instance), making sure you have appropriate seating, headsets for phone use...that sort of thing.

organisations such as

disability-adjustments.co.u...

and charities exist for this purpose.

There are lots of things that can be done and often the costs of such measures can be shared between employers and appropriate organisations.

If you have a good employer and they value your service they should be willing to see what can be done to make your working life as manageable as possible. Hopefully with some changes you will be available to avoid having to look for another job which in the current economic climate and with the issues (albeit discriminatory) would be pretty difficult.

Good Luck, Linda x

[Hidden]

Hi Sandie & welcome!

I have PsA but was diagnosed this year after wondering what was going on for quite a while so, like you, am still trying to get my head round what changes I can make & so on.

I have three grown up sons, they don't live with me but I too find it difficult to know how much to tell them about how I am. I suppose it's inevitable that other people will take even longer than we do to come to terms with the illness.

Work sounds tough. I have heard other folk on here mention that Occupational Health Nurses from their Rheumy team have gone into their workplace to explain an employee's needs to management & recommend adjustments etc. I'm lucky in that I don't work just now but if I did I know I'd be reluctant to ask for anything for fear of being marked out as the 'needy one'. But I think such fears are usually misplaced. Your boss almost certainly knows that you are struggling & might well respect you for being proactive about suggesting changes - maybe short breaks, a better chair etc.

And if you are worried about leaning too much on your daughter, how about asking mainly for very practical help at the moment - e.g. working out with her how you can minimise stuff that needs to be done when you get home, a cooking rota etc.? Possibly our nearest & dearest can cope with practicalities better than emotions at this early stage?

Christina xx

[sandie2255 in reply to Hidden]

Hi Christina,

Thank you for your lovely message. I am trying to come to terms with this inconvenient illness but find sometimes I want to just run off into a corner, put a duvet over me and not come out for 6 months!!

I am glad I am not the only one who tries to shield our children from the pain we are in. Unfortunatley I have probably spoilt my daughter over the years as she is an only child and it has now come back to bite me on the behind! I am getting her to change slowly though and she is becoming more willing to help me out - I just have to do it in such a way that she thinks she offered to do it in the first place.....

Anyway, end of my 10 minute break so back to work, lovely to chat with all you lvoely people.

take care, Sandie xx

[cathie]

Yes my daughter is an only child and sometimes i think she is still a teenager even though her son is fast approaching his teens. Am off to make chocolate icing for his birthday cake and will sit down several times in the process I suspect.

[Hidden in reply to cathie]

Phew! Thought everyone else was 'sensibly' sitting down most of the time while cooking but I cannot do it, it doesn't work for me.

[_andy_]

hi sandie ,, welcome to the site ...

i also work full time ,, work shifts - 4 days on, 4 off, i know how you feel ,, im in the same boat , if i dont work , who pays the morgage etc etc ? ,, the worry of this along with the illness , is enough to stress anyone ...

p.s ... the 4 days off are nice

andy x

[sandie2255]

Thanks Andy.....just approaching 6pm and the end of a 4 day shift!! Woop woop!

A lie in tomorrow will be absolute bliss and if anyone dares ring me or knocks at the door, heaven help them!!!

Take care,

Xx

[Hidden]

Hi Sandie

I am really pleased you have found some good support on this site. I wonder if you have heard about Access to Work and the help that this can provide, if you would like to find out more click on this link gov.uk/access-to-work/overview. NRAS also produce 2 booklets on work, one for the employee and one for the employer - you can download these from the NRAS website or if you prefer you can call 0845 458 3969 to order some copies. They have a wide range of information about your rights and the responsibilities of your employer and a list of helpful organisations to contact.

Best wishes

Lorraine