Work

Hi,

If this doesn't seem to nosey can I ask you nice people who works and who doesn't ?

119 Replies

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  • I haven't worked in 2 years, I have been receiving Social Security Disability for the last year. I am a full time college student though. I wish I could work! This house feels like a prison some days!

  • I've worked for the same company a little over 15 years & then RA hit me hard. I went on sick leave for 11/2 years. I spent those 18 months on the couch as I suffered from fatigue & pain.

    Today I am back to work, albeit part time. I am working for the same company, but in another position. My income went from $52k a year to $22k the year I was off. Now that I'm working part time my income should be about $30k a year.

    I realize that this is a UK site, so my income might not be easily understandable. So I'll do my best. I live in Vancouver Canada, where the average rent for a 1bedroom & 1 bathroom apartment is $1600 a month.... so bringing home $2200 a month is not a lot of money.... If I was a single mother I wouldn't be able to survive. If I recieved our government benefit called a PWD the amount would be $1347.00 a month.. I wouldn't even be able to pay rent...Totally disgusted at how hard working people suffer financailly with autoimmune diseases.

    A lovely lady that I talk to through private email sent me a property outside of London. The beautiful 3 bed &2 bathroom house was selling for $450K (Canadian). I kind of chuckled. The price of a 1bed & 1 bath apartment is $450k in Vancouver.

    RA SUCKS!!

  • But in central London it could be 1,000,000 Canadian dollars!

  • Hi Vonnie10 :) I used to work full time as a surgery nurse, until my body told me to take a rest, I only work with charity now on my own time. I'm 54 years old got the dreaded diagnoses 17-18 years ago Lupus SLE & sjogren. Probebly had it much longer!!! It's hard to be told you can't work anymore, I sincerely hope you are coping with your situation and know you are def. Not Alone, Take Care Fiona 😉

  • You have a real overlap in your disease, I wish you well. Must be difficult.

  • Thankyou, I just try to keep going and to smile every day.

  • RA is bad enough, I am sorry you that many types of autoimmune problems with you. Take good care, Fiona.

    Amy

  • Hi,

    I teach special needs full time.

    Ali

  • I am almost 70 yrs old and obviously I do not work however my husband has dementia so no lying on the couch for me, I at times feel like screaming with the fatigue and pain. Xx

  • Oh, oh, Diddydiver, I can only send you hugs. Don't know what else to say.

  • So sorry, to say that sounds incredibly difficult is such an understatement xXx

  • Bless you

  • Huge hugs xxx

    J

  • Oh! So sorry to know that. My big hug to you.

  • RA does seem to like older people, so I think many of us on this site are of mature years...

    I changed work after I was diagnosed, as couldn't do a 60+ hour stressful week with loads of traveling. Then later I dropped to part time. And this year I "retired" so now only do voluntary work (I say retired in brackets as although not 60 I won't get my state pension until 66....). Luckily I have a pension from work I could start to take.

  • Helix if I thought I could get my pension at 60 but 66 is a long long way of I doubt I can manage until I'm 55 never mind 60.

  • I gave up work as an Estate Agent December 2016. Just couldn't cope with driving, computer work and the stress. No help or understanding from employer and my colleagues. Problem is that I look ok therefore I must be ok or else I'm a hypochondriac. I am 58 and not due pension until 66 now. Thank you UK government . I have no private pension but luckily my husband can support us although we have made cuts. RA is hard to live and cope with and I forget what life was like without it. I get down at times and hate the way it restricts my life. I no longer run my life, I am dictated to by the RA.

  • I haven't worked since 2009 when i got made redundant in the November and was told by my Remploy advisor that i wasn't fit for work.xx

  • Hi Sylvi, that’s awful for you!!! NO, Remploy advisors should be telling ANYONE they’re not fit for work...they’re advisors for people with needs in the workplace they are not medically trained...I work in a similar role and I certainly would not make that judgement call even if I thought it.

  • This guy became a friend and he told to go on the sick as there are people with lot less than i had who were on the sick.xxx

  • Ah I see and yes you’re probably right!! I see some awful cases of people been found fit for work but you think..how the heck did they come to that decision!!! But I have to stay impartial xx

  • He said it because he felt i deserved it more than some.xxxx

  • I remember seeing a lady who had RA for 40 years she been made redundant and didn’t have a clue what she couldxliam, she was quite badly affected, she was a real inspiration to me. She worked for her piece of mind and of course the money...not all of us can afford to give up. Please do t think I’m in any way having a go at you...it’s just the other side of the story, when it cuts us down in our prime! Xxx

  • It was a case of who would employ me as i was over 50yrs old and who would take me on with the conditions i had.xxx

  • Absolutely!!! I’m not sure if anyone would take me on now either...I’m staying put 😊. Have a lovely day xxx

  • I work full time as a breakfast chef, I had RA 2013 but I think I had it around 2008 but did not know. I was off work for 3months after getting diagnosed and for the drugs to kick in. My work are not understanding because I look ok but sometimes am not ok.

    Carol

  • I'm a full time Prison Officer. Simply can't afford to give up, although it almost kills me some days. I have a wife, 4 children and a mortgage to pay for, we would be homeless if I gave up.

  • I'm so sorry Woodstar - That is such a very, very hard place to be. I hope that they can give you things that won't affect your work but will still let you be mostly pain free?

  • That's heartbreaking I feel for you.

  • When we are the sole bread earner, it is hard to give up. I have similar situation being a single mother with college going kids to support.

  • Oh, I'm sorry to hear this woodstar1. Your situation is just so sad.

  • I work full time teaching special needs, i have systemic sclerosis and underactive thyroid. At present i am finding the workload really hard and have felt really unwell since i returned in September after the holidays

  • I carried on working in childcare- I cut my hours but found that the stiffness and pain is worse if I'm not moving around so I make sure I'm continually moving/ doing something.....,

    It works for me!

  • Yeah - I have to keep moving too.. otherwise I can't move some times.. especially after a hard / physically active day (like yardwork, painting the bedroom, etc...)

  • I used to love painting the house sadly I just can't now.

  • Yeah - I'm that way with wallpaper - One of my favorite decorating techniques. But I can't get up and down the platform very any more, and I've fallen a few times due to the change in my feet, so I am really scared of that outcome.. sheesh, huh?

  • Dear CaeryIUSA,

    Oh, dear! You just can't climb here and there any more to avoid any chance of falling down, just leave the hard work to others and do what we can to avoid adding more pain to ourselves and eventually may cause problem to others too.

  • Thank you for the laugh - I would have horrified most people a few years ago. The ceilings in our bathrooms are about 7 1/2 feet high, and I would start out standing on the top of the toilet, move to the tub, move to the painting platform, then the counter top to reach the areas behind the sinks.. Sheesh. I guess like most of us, I thought and acted like, I was invincible. And I never fell once.. when my feet started changing and my toes started turning however, I started falling frequently. I think I now need to take a class in slapstick on how to fall safely - ha ha. Anyway- Just wanted to thank you for the chuckle this morning. Have a great week!

  • Now there's a good idea. Maybe I'll join you in taking that Slapstick course on how to fall. lol

  • If there such a course? Hahaha....

  • I'm 57 and now work part-time as a specialist nurse in the NHS 3 days reduced from full-time 5 days year ago. I'm finding it a struggle and now looking at retirement on medical grounds as I am very limited in what I can do as a nurse these days. RA has affected my upper limbs mainly.

    Like the others have mentioned I can't receive my state pension until 66.

  • I am 46, working part time beauty consultant... all day standing. Was before massage therapist and beautician but can't do it anymore... thanks RA:(( some days it's hard and killing me...

  • I'm ward based auxillary night duty I'm struggling the drugs aren't working I'm about to start on the infusion shortly ,, struggling at 52 years of age.

  • Don't give up hope ....after 2 years of failing the normal drugs I was put forward for rituximab.

    It worked for me :)

    Good luck

  • Yes, do not give up. I was diagnosed in Jun 2014 and I am basically back to my very normal life. I guess I am lucky to be treated early and I am a very obedient and discipline person by nature, I listened and worked closely with my rheumy and physiotherapy. I do not skip any medication and exercise every morning.

  • Matilda I have just got my ill health retirement from the NHS. Best thing I could have done. Had to give up Nursing several years ago so worked as a receptionist. Kept reducing my hours but it became too much. Not helpful that due to organisational change I was put on 7am starts and lost my parking space. But done now. Pensions have been a nightmare so unorganized just got it last week. Contract ended 30th July.

    I would definitely say go for it. Now I can cook meals not exhausted all the time and can manage flares better. I am 54 btw.

    Think of yourself x

  • Hi, I worked as a staff nurse for 20 odd years until my thumb tendons ruptured in both hands. The Occupational Health doctors decided I could no longer work. It was just before the disability rules changed and I had no recourse. I have now been retireed for 17 years . At first I was angry and if honest a bit bitter. Now I realise the doctor was probably correct as the RA is deteriorating. I now rely on an extremely poor work pension, PIP and my husband. It's not what I hoped my life would be like but am so tired and sore, I hope you can find a your way and come to a logical and workable decision. Take care

  • I really understand about the pension my forecast has dropped £10000 a year following reduction in my hours. I have been paying since day 1 1978 but when I worked part time while my children were young only paid half a year so in 39 years I have approximately 29 years. When I realised this I began topping it up just before the RA diagnosis 2 years ago. I also made a bad decision in 2011 when they asked if would like to stay in 1995 pension or changed over to 2008 I changed over to 2008 as at that time I couldn't see me retiring before 65.

  • I understand that too. Sounds like myself, working part time when my boys were young. I had, like most people planned working until I was at least 60, most people do. It's a very true saying though that you learn to live within your means, it sometimes means you can't get what you want but we have a roof over our heads, we eat well and we have an occasional evening out. I suppose we are luckier than some. I wish you well. Take care

  • Going from full-time to part time was a big drop in my salary. So had to make many adjustments to my budget.

    You are right as long as we have a roof over heads and live within means that should keep us going.

    It may mean losing my car as my husband doesn't drive but he has a pensioners bus pass which may not receive until 65/66.so another 8/9 years. He's 11 years older than me. Has his own health problems and has not worked for 27 years so has had very little stress compared to me.

    I'm going to look into early medical retirement as my RA remains active and they are talking about biologics now.

  • I really sympathise and I wasn't being flippant. It's a horrible blow and takes time. I am now thinking your health is so important and stress can have such a detrimental effect on everything. I hope if you can get onto biologics that they work for you. Remember, look after yourself. Take care

  • I'm gutted for you isn't it a horrible disease, I don't think I can go any longer at 51 how bad it this RD

  • I understand the feeling I'm also struggling I work as a auxillary night duty, it's killing me.

  • Hi I am a Detective in the Police in Public Protection. I have always worked full time (and some) but recently dropped my hours to 36 per week (if only!) due to a shift pattern change which is much more difficult to sustain with AS and the fatigue that causes. I have a couple of adjustments to the pattern under the equality act but the SMT wanted to have me permanently restricted and classed as disabled to progress to consideration for medical retirement cos I couldnt manage the late shifts back to back or more than 5 shifts on the trot without a rest day!! I fought them and remain as a DC for the time being as I want to work and will not let AS beat me!! If it wasn't for anti tnf and now DMards don't know where i would be.

  • Sappy I wish you well

  • I am so sorry for your situation. I wish you can get back to your normal life soon.

  • I'm a full time Reception class teacher. I'm 36 and have had JIA since I was 14 x

  • I had to cut my hours due to this disease, underactive thyroid and recently had 2 stents fitted. I've been in my job nearly 21 years now and MD has been brilliant, I'm able to do some of my work from home (not always a blessing!!) I live alone so have no financial support other then my earnings and am now not due state pension until I'm 65 (end of next year) despite having paid full stamp for over 40 years.

  • RA was my 40th birthday present- I've been diagnosed for 6 years now. I have battled through it as a single working mum and now that my meds are working and I'm classed as in remission I am proud of the fact I have been able to keep my job.

    I work in Reception class with 30x 4 year olds. It is physically and mentally challenging but I absolutely love it.

    I feel extremely fortunate to have maintained a level with this awful disease that means I have a good quality of life- especially when you read peoples stories on here

    Long may it continue!!

  • I am still working full time. I was diagnosed nearly 6 years ago and I struggle some days to make it through the day. I basically sleep and rest all weekend so I can go to work and make it through until the next Friday. Not much of a life but I have very little superannuation put away as I didn't start contributing until I was in my mid 40s. My plan is to work until I drop and hope I kick off as soon after that as possible as I don't want to live in poverty again. I did that as a single parent and I never want to go back there.

  • Ha! That's basically my retirement plan as well..

  • I have been off work for 2 years now. It looks like I may be able to back to work pretty soon as the employer is going to make some accommodations for me. Yeah! Living on disability with a disability just sucks. Enough money to support life but not much of anything else. Will be nice to have a paycheque again.

    Scott

  • I work in the NHS. Pre RA I worked on average 55 hours per week (but was only paid for 37.5). I now work around 40 hours per week on a Mon Tue Thurs Fri after putting in for a flexible working request. My boss was very supportive of this but I am still expected to fit 55 hours of work into 40.

  • I worked 37.5 hours 5 days up until last year but expected to work over these hours without being paid overtime or toil. Always being told it's my choice to stay late.

    Now part time I'm expected to cover 5 days work into 3 days so I'm exhausted by the time I arrive home. So have a shower then straight to bed without eating. Also one day a week following MXT I feel unwell the next day. So not much of a life I lead just to stay at work.

  • Typical NHS. My thumb tendons ruptured due to, I think, overwork. Our colleague was off long term and I felt I couldn't let my colleague down. Ended up going to Rheumatology appointment and being admitted for a fortnight. It's funny though as the next day they brought in another staff nurse to cover!

  • I work full time as a secondary school teacher. I was planning to go part time but had a reasonably good summer term so have stuck with it...let's see how this gruelling term goes!

  • I dont work as cant. Makes me sad but trying to expand and concenrate on what I can rather than cant do. Do you work?

  • Hello Vonnie 10, I don't work now but I did for five years with RA until I sustained my other injuries reported in my "Inspirational...maybe?" post elsewhere. When I first developed RA it was difficult in my job because I needed manual dexterity and t felt like I was working with two sprained wrists. Luckily my mobility has not really been affected apart from occasional painful toes. My big worry was my susceptibility to infections, due to the Humira. From the nature of my job I was exposed to a lot of nasty diseases, plus the usual colds and flu from all the people I dealt with daily. I am pleased not to be working now though.

  • Similar to me I work on many wards exposed to infection +++

    That's my fear. Talking about starting Embral.

    They are also getting tougher with sick leave and if return from long term sickness often start with phased return which uses your annual leave. Found this out as a member of the team was off for 8 weeks following foot surgery.

  • Hi,

    I work in a pharmacy full time -Monday to Friday, 9-6.

    Not easy, but I will not let RA define me.

    Hope you’re well x

  • I work a little; about 12 hours a week. I am a therapist so my job is sedentary. I do not have the strength, energy to work full time but do get some PIP too.

  • I was medically retired 2 years ago from local authority after 23 years but could not carry on after struggling for a couple off years , it took me about six months to adjust to being retired but now I'm contented and there's no way l could've carried on, I'm 52 but manage on my works pension plus other benefits and my other half works 2 days and is my carer who I wouldn't manage without god bless her

  • Work part time at a primary school with special needs children.

  • It’s so encouraging to see so many people still out there in the workplace even though it’s extremely tough at times, I can be feeling like absolute rubbish but I drag myself into work and something just kicks in!! I have a fairly sympathetic employer who if I get in a bit late knows that I will make the time up at the end of the day. I’ve had to reduce my hours slightly and I have a parking space which helps a lot. RA tends to strike us when we’re in the prime of our lives and we just can not afford to give up work..mortgages, pensions, kids going to uni and getting married..it all costs money. I know working keeps me sane and I hope to continue for as long as I can.

  • Me too, I am 53 and don't want to retire and keep hoping and working towards being able to do a little more than I do.

  • I lost mine as sick pay run out and I still wasn't fit enough to return

  • I am semi-retired.. Working on things at home and from home

  • I work from home too part of the time and it makes a huge difference not having to travel. I travel to work outside of the home just one day a week. It's all about doing what you can.

  • Yeah - I used to travel for my job - Cross country one day a week. Now you can't get me on a plane for almost anything... Have a great week!

  • I work full time, I need my medical benefits to obtain the Medicines I need. I conserve what little energy I have and save it so I can get through a day of work. Then I go home and rest as much as I can, so I can go to work the next day. It is physically hard and requires a lot of mental focus for me to do this, I have trained myself to work safely through pain, and this has allowed me to continue to work. If I stopped working I would be faced with the decision of loosing our house or paying for biologic medications.

  • That's so sad 😭

  • All of us unfortunately have to make tough decisions to survive. I wish all of us were overflowing in wealth, so we could afford treatments and medicines and not depend on the insurance companies and government agencies - some of which make really sick people jump through hoops over and over just to qualify to get what you need.

    In my country drug addicts are given free needles, and an air conditioned place to shoot up. As addiction is considered a disease. Full ride being off work ( if they work) into Cadillac treatment centres, all the best social workers, drug councillors, doctors at your disposal, methodone clinics with free medication, government welfare, and social housing...... yes I know someone in the system so I am aware of what they get and we are pretty much equally matched socioeconomically

    RA is a debilitating disease too, yet I had to pay for my own needles for Methotrexate, our hydro so high to put on air conditioning

    IDK something is really wrong here

    Before anyone jumps at me for the Drug addiction comment, I do believe it is a disease and should be helped, BUT why is one Disease helped financially significantly more, than another group?

  • I cannot afford the private hospital hence I chose to go to the government hospital nearby. I am lucky to say that I find them as good though I was once had to hunt around for methotrexate because of the corrupted government who cut back the budget for the medicine supplied in the hospital.

  • It is horrible indeed. My big hug to you, dear.

  • I'll be 50 in April and was dx'd in Feb of this year. I work full time as a hospice social worker in private homes and nursing homes. It can be difficult to walk and then type all my documentation as my RA is in my feet/ankles and hands/wrists. I also have to be very careful about washing my hands and trying to keep germs at bay since I'm on DMARD and a biologic. There are days the fatigue is so great I could stay in bed but I get up a little later and work a little later. I certainly can't carry the caseload I used to and I have to watch the stress. I'm blessed my employer is awesome.

  • I've worked 21 years full time with an airline .

    Last month I dropped my hours

    I'm now 75% and it's great 👍

    Full time was killing me ( ok a little dramatic ) but it was too much ....never had time to recover from jetlag .

    I can't afford not to work .

    I'm single and still have a mortgage to pay .Also I would miss my colleagues it's a great job working with the best people

    I would be lost without it .....but I'm prepared if I have to give it all up , would just mean downsizing my house 🏡.i would have to do something though as the thought of not working at all fills me with fear .im too young (55) to feel this old at times .git to keep going .

    I refuse to be beaten by this bloody RA :)

    Keep smiling folks :)

  • Fifi I'm part time as well nights shifts long ones my RA is just not controlled at the minute been over 18 months now it's wearing me down I love my work mates I mind my grand daughter 18 months old. She stays overnight once a week I think it's a toss up with me right now as to what I'm going to do benepali isn't working I'm starting ivi drugs soon got a gp appointment Wednesday so I will see how I go, I'm happy you have option and your doing well.

  • I was dx age 6 in 1971, went through school with RA and then started work at 16 in an office based environment. I knew early on I would not be able to stand or walk about all day. I continued working full time for 22 yeas. I had a mortgage and bills to pay and two children to support (with husband). Giving up was not an option. It wasn't until I developed neuro problems in my neck and had neurosurgery that I was forced to stop, age 38. RA affects all my joints, neck and spine and has damaged all joints. I was a legal secretary and loved my job. Had I been dx age 50, then I could have worked until retirement, so I do feel that the younger a person is dx, especially children, the harder time we have.

  • Yes, sadly I would say you are right. I was 51 when diagnosed with inflammatory arthritis and I am incredibly restricted really but I am aware and grateful that I have had half a century of full mobility.

  • Also, recently dx patients have access to better and more drugs than was available in 1971. That's another factor that should keep anyone recently dx in work and hopefully until normal retirement age.

  • I was diagnosed at 12 in 1987. My parents never educated me nor did they treat me for my RA. I am now 42 with the RA eating my spine, and caused a tricuspid regurgitation (leaky valve) already! It's in all my joints but the worst are my knees and spine!

    If we would have been diagnosed at a young age now we would be on a treat to target plan asap! Luckily, my son doesn't have, my middle daughter is being tested, and my 9 year old daughter will be tested next year. I think the middle daughter has it based on her symptoms. She lived with her father and he refused to test her!

    It's amazing we are here to tell our tales!

  • Sorry to hear you may have been denied treatment. Hopefully your children will test negative. Neither of my children have been tested and thankfully are not showing any symptoms.

  • I will pray for their continued health and that they are disease free!

  • I've just gone back to work 4 hr shifts 4 days a week but finding it so hard

  • Hi, I was a nurse for 30 years. I was medically retired as could not do my job as I couldn't drive at the time and my attention span became poor. (I worked in child protection). I miss my job. I felt guilty, I still do.

  • I'm 49. A self employed designer. I have only just been diagnosed 8 weeks ago but haven't worked for 4 weeks. I'm panicking to be honest.

  • Please don’t panick, easy for me to say I know and I was exactly the same when I first got diagnosed. You need time to come to terms with your diagnosis... the medications and treatments are getting better all the time although it may take time to find one that suits you or you may hit gold first time. I saw my hand surgeon on Thursday, who told me that he used to get 2 or 3 RA Hand operations like mine a week now hes’s “lucky” to get two a year!! Good luck 😊

  • Dear Jules13,

    Yes, you should not get panic but to fight back. Trust your rheumy and your physiotherapist, work closely with them, hope that you will soon be fine. It took me 1 1/2 years to get back to my normal life and I am in remission since.

  • I'm a children and families social worker and work full time. Just got to try to continue as long as I can.

    Marie

  • I worked 37.5 hours a week as a bindery assistant, to a part time 18hrs a week now as a care assistant. Why do you want to know ? How will this info help you ?

  • Sorry I asked you didn't need to answer.

  • Made redundant 8 years ago at 55 just before our wedding. Given the number of graduates fighting for admin roles I had little chance of getting another job. Dx last year has ensured I'll never work again. I already have a full pension contributions record and will get my state pension next year. We get by

    J

  • I'm a Customer service Leader for an airline and have been flying for over 30 years now.

    I was diagnosed with RA in 2015 with explosive onset in multiple joints.

    I didn't fly for 11 months while the Rheumy tried to find something that worked as well as Prednisalone. I was on 40mg of Pred a day which gave me Steroid induced Diabetes.

    After my liver rejecting Mthx and Leflunomide and a severe allergic reaction to Sulfasalazine, I was finally able to lower my steroids as the Hydroxy and Enbrel took over.

    It was a long wait but now two and a half years on I have been back for well over a year and have moved house in that time too.

    Though they say everything indicates remission and certainly my Inflamation is Low and level. I still struggle with appalling stiffness and pain in my feet. I get embarrassed if people see me getting out of a car after a long drive or a cinema seat as I find it hard to walk. I look young but my body behaves like its 90.

    Our delightful company is in the process of closing our final salary pension to future contribution.

    This will have a major impact on my earnings in retirement . All those years of hard graft and jet lag and abuse from the public and aching bones only to have my planned future ripped out from under me.

    God only knows whether this disease will let me work until 60, it just seems so far away. Bloody state pension not until 67, some days you wonder whether you will even live that long the exhaustion is so bad.

    Very very grateful however to be in a position to be coping with long haul flights. At one point It would have been a total impossibility.

    Mx

  • Lovely news I love reading all the great and positive message gives me hope

  • Well done missy !!

    Blinking pensions !! I've had to reconsider my retirement plans too .just want to pay my mortgage off first (18month plan ) then I'll be in a stronger position

    Change from a position of strength not from weakness ' is what keeps me going :)

  • I am 56, I was diagnosed with RA in Jun 2014. I have been working in this company for more than 11 years and I am glad to say that my employer and direct superior have been very supportive and great to me while I was very since back then.

    I hardly got/get sick and I worked very hard to ensure all my works were done well if not perfect. I would/will try to clean up all the problems, including problems from other departments, because I believe that it would help the progress of the company. Because of that, I had been left to work very independently.

    I am a single mother of 3. When I was diagnosed, my youngest son was in his first year of college in Taiwan. I had no help from anyone except my eldest son who was/is still in the college, worked very closely with me to finance the family and the siblings.

    RA hit me so sudden and so hard, once I intended to commit suicide as I could not bear the pain and the sleepless nights. To be entitled for the social security fund, I was told to stop work. Being a mother, I could not quit my job for the small fund and I must fight back to ensure my son's education was/is not being affected.

    I could not go to the private hospital because I did not have the luxury to do so. I therefore went to the local government hospital for my treatment. I am glad that I found them very good and I had no way to compare them with the services of any private hospital around.

    I would say that my speedy recovery was because I have very supportive employer, senior, colleagues and friends around that gave me the good rooms to recover. The future of my son gave me the spirit and strength to fight back. 1 1/2 years after the painful exercises and the nausea of taking methotrexate, I finally got back to my normal life. I had/have been working though I slept and took many breaks in between during my office hours at the peak of my suffering, my employer, senior and colleagues were okay with me to do so. Might be they did saw me left with skin and bone for many months, they knew I was in real trouble instead.

    I am now traveling to meet my customers if needed. I travel during most of the weekend to conduct the training as a volunteer for the society. I visited my son alone last month. I went back to the badminton court and I to bowling though I tried to restrict the swing and the running around.

    RA indeed a very sickening and painful disease to be deal with. I am glad that I am okay now.

  • That's so lovely your doing well after all your struggles hopefully I will get there.

  • I do work but as my partner and I have our own business - it means I work from home .

    So yes, I go into the office at 10.30 but will work later till 7pm . I am privileged in that I can lie down whenever I want ( which is often !) But ultimately

    I do have responsibilities I must fulfill even if I feel rubbish . So I will often work at the weekend to catch up.

    However , OT at the hospital have told me that there is no way I would still be employed if I worked for a company . (RA for 20 years )

    So in one sense I realise I am very lucky but in another it is a bit of an albatross. ( have even worked with a long leg plaster after breaking a leg ! )

    Now that was interesting !!!!!

  • Brilliant

  • No, I don't mind really. Just curious. My nose does tend to get the better of me lol. Take care xxxx

  • I do as a carer. Get tired but keep going. Do worry about the future though.

  • Hey there, I'm 22 years old working part time with RA. I was diagnosed at 6 years old... studied to became a teacher in primary schools. Only to work out my body is incapable of walking/standing for that long... So now I'm working in a office doing administration work :(

  • Hi bonnie. I've just gone back to work after being diagnosed with RA I'm December 2016. I had a hip replacement in may 2017. StI'll feeling rubbish some days. I've cut my hours down to 5 hours a day 25 a week instead of 32 hours weekly. K wish I could cut my hours even further but my hus band is self employed and sometimes we rely on my wage. X

  • Sorry Vonnie. This spell check on my phone is beyond me.x

  • Hi Vonnie yes I work full time. I am not sure if we can apply for PIP when we are still working. Do you know anything about it please?

  • I work,have ago Annie yes I got small amount and a badge

  • I am now retired, but my disability and all my battles with getting a proper and not yet another symptomatic diagnosis, started in my very late 50's, while the DWP did their very best with their private agencies to make an already stressful situation even worse and depressing.

  • That's the last thing I want is to stop working, I will go on as long as I can I work night in NHS so it's not to bad at the minute once them patients are bedded down I just prey each shift isn't to bad fingers and toes crossed ,we can sit and do paper work lots of it and my work mates are a good bunch my manager is good to, she wants me on short day shifts but I think I will find them harder nights are quieter .

  • Hi Vonnie, I perhaps will try for PIP, but I don't have any care, I manage myself. I have a lady to clean and a gardener to come and help every two weeks. I just don't think I can apply.Do you have help with personal care?

    Thank you for replying to me.

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