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Rank: Newbie
Groups: Registered
Joined: 5/11/2011
Posts: 8
Location: Accrington
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Hi All
I have been off sick since last October and because i'm still not on the right drugs I haven't stablised... Some days I cant see myself ever working again, yet i don't feel that i'm on the scrap heap yet
Jue
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Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
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Hi. I know how it feels. Everyday now I yearn for and mourn the normal old days.
I am lucky in that my role allows me to sometimes work from home and I am doing this a lot more at the moment in the hope that my drugs kick in well. Early days I am told with being on them only about 5 weeks, (MTX 5 weeks), Plaquenil 1.5 weeks.
I suspect I will need sick leave and dread a lot of commuting as it would entail 80 mile roundtrips and full day work.
God - will life ever be the same again?
I fear no drug can make be 100% better..90% seems like a dream come true - one steriod injection had that affect but they are not recommended are they?
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi ya
I worked for 9yrs, increasingly part time and then took ill health retirement although I love to keep my mind active and I am busy with 3 children.
With severe RA none of this was ever easy and I have made some pretty tough decisions
But I am ever so glad I worked.
I loved my job.
for a while after I had to stop, I did the open university.
something to think about?
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hello Jue
Yes I work full time. I was diagnosed two years ago and my RA is not under control. I have just been advised that my next step is biologics by IV.
I cannot deny it has been really hard and some changes have had to be made. I am employed for five days a week but now work three days at work and two days I work from home. I just would not be able to manage a full week. I also have to rest as much as possible evenings and weekends to gather the strength for the next working week. There have been times that I have laid in bed and wondered how I was going to get through the working day but I have hauled myself out of bed and once the early morning stiffness has eased and I have taken all my medications I plough on through the day. I do enjoy my job and I think this has been the biggest factor in keeping me working. This and the fact that I am the only bread winner in our house. If I did not work we would starve as benefits are going to be harder to come by. I do have to take some serious painkillers during the day to keep me going and this is not ideal but hopefully this will change once I move onto the next step of medication.
I think each person is different but if you have a desire to work then perhaps a part time job could be your answer if you can afford this.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi, I was diagnosed almost two years ago, and had to stop working in a special needs school, as they wouldnt allow part time. I then worked as a nanny for two days a week. Then added another child to the mix. I now work three days a week with two little boys aged 2.5 yrs and 14 months. My rheumatologist thinks my RA is well controlled, but I still have lots of swelling and pain. I had a bad flare in April. Its the type of job that you cant really go sick, its very hard sometimes to keep going, but I love the kids, its a very physical job, and the main thing I cant do is to get up and down from the floor. I think some people with RA find it impossible to work, it depends on the individual. BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Jue. I work too. Try not to despair, it's early day for you yet. I've returned to work after a 15 month break and in 2006 I was off for 6 months. I have found that being as active as I can has been a help to me. Like Jackie said we are all different. I work in a kitchen and find it so ard in the morning, getting up very early to get moving but once i'm up and running I feel better for it. I know it takes it's toll but it means a lot to me to keep going. Glenys.
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
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Hi Ju I was diagnosed last September. I am 46 and work as a receptionist/secretary from 9.00am until 4.00pm. I found it very difficult last summer before diagnosis and before I started taking my medication. But now that things seem to be under control I can cope with working. I find that after I've been sitting a while I feel very stiff so I make sure I move about at regular intervals. I also suffer from tiredness sometimes its worse than others and when I get home I find it hard to motivate myself to do chores or cook tea, but I'm thankful that I can work and hope to do so for as long as possible. Take care Debs  x
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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i used to work in a kitchen and my chef/manager put so much into place for me after i gave him the books from nras on emplyment to read, sadly he left and the new chap wasnt that helpfull then we got bought over just as i had the worst flare up so was off sick for the first time, i got a few choices at the time none suited me so in the end i left,my husband passed away at the same time which tipped me over the edge but i have applied for jobs since with no luck, now i dont think i could work as some days the mind willing but the body gone on holiday, i do miss the busy life,the pressures and the people from work,
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Rank: Newbie
Groups: Registered
Joined: 5/11/2011
Posts: 8
Location: Accrington
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Hi All thank you for replying to my question regarding work.. At the moment my employers are looking for another role so that i can eventually go back, as i wouldnt be able to do my original job.. I think what scares me is that i am a lot worse now than what i was when i first went off sick.. I like my own money too much to give it all up though, i think there's a bit of that in us all :) !!
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Jue I am a slightly different kettle of fish in as much as I was diagnosed 23 years ago and at the time was severely ill. Almost immediately after diagnosis I went on sick leave and was medically retired twelve months later. I hated giving up my career, a position which I had worked hard to achieve, but such is life. As I say that was many years ago and things have now changed dramatically with the availability of improved medication and better prognosis all round. I haven't read your history but I assume from what you say that you are still looking for medication to control your disease. This can be a long haul unfortunately and is still to some extent trial and error, what works for one doesn't work for another. Once the disease is properly controlled a return to work should not be a problem and you should be able to live a near normal life. The thing is to remain positive and keep the pain relief well topped up. All the best Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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I work too, part time in 2 different schools. Some days it's fine and on others all my available energy goes into my jobs and I have NOTHING left when I get home- no energy to go to dance class or go out socializing or do the housework or sometimes even to shower myself! All days are different. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Member  Groups: Registered
Joined: 12/16/2009 Posts: 21
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Hi, I work 10 hour days, but I'm very lucky as I have a fantastic boss (my brother) and great husband and children who understand totally. It is hard and some days I'm tired and achy or have a banging headache and don't have much energy for homelife (forget about social life), but I enjoy my work it keeps me sane. Good luck and how you find your work / RA balance.
Jillx
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Rank: Newbie
Groups: Registered
Joined: 2/11/2010
Posts: 2
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Hi Juliana
I've had RA for 24 years (since I was 11) and I have always worked full time. I only manage this by being able to work from home all day or if I do get into the office being able to come home in the afternoon to work. I know I'm incredibly lucky to work from such an understanding manager, it really does help!
I've been told by the hospital numerous times that I should consider giving up work but I know that will make me worse as I'd get depressed so work (however little I can manage) is best for me, I think I'm too independant for my own good! (not always a bad thing)
The best thing is to sit down and speak to your manager/HR department and explain what RA is and how it effects you personally as we are not all the same and people assume that bcs you look ok, you feel ok
Best of luck
Jx
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