Work and RA

[Theresa]

I'd like to open a discussion about how people with RA managed their professional life.

In my case, I've a demanding job and I start to wounder for how long I'll be able to co-op with my life at work, that is where I spend most of my time.

I've to wake up every morning at 4:30am or 5:30am in order to get as much money as I need to cover up all my expenses.

Therefore, I describe a normal working day: As I mentioned above I get up 4:30am, have a light breakfast, not because I'm hungry but I have to intake 5 strong tablets.

Then I drive for 45/50 minutes to work where I swap my coat for the uniform jacket and tied up my hair. I have to sign in and be ready in my position at least 15 minutes before 7:30am and work in pain, terrible pain. Then around 9:30am I'll go to my position for the rest of the day until 5:45pm, where I work with CCTV/PSS and public. My company is very demanding in time and performance.

I feel quite sad because I work with them for many years, I have higher qualifications and experience then 80% of my colleagues, but they don't give me a promotion because my disability. As my manager said to me once, I must bear in mind that I'm the last on his list, always and no matter my very high standards as a professional. I trained most of them. It is so unfair and revolting indeed, but is the reality. Sometimes, I wish to leave, tell them that they can do, just because my manager doesn't know to perform doing my job. Is a very old arrogant ex-military man. He thinks that we are a continuation of the army. Disgraceful.

Is a very stressful job and by the end of the day I've spent all my strength, then drive home, or sometimes I have to stop on my way to buy some bread, milk, etc, nothing too much because I wouldn't be able to carry the bag.

My son meet me at the car, when I park of course and carry the bag for me. To be noted that my son does everything for me related with house chores. As well is the one that every morning wake up as well to do the lace of my uniform shoes.

He cooks, a good cook indeed, shame that most of the time I don't even have the strength to eat, so I just eat a piece of fruit because I have to intake 8 strong tablets.

All these happen Tuesday to Saturday (always) then I'm off Sunday and Monday.

On Sunday I have to get up around 6:00am because I cannot to be in bed for much longer as pain is so intense, but I'm so exhausted, so I'll have the breakfast, medication and seat on a chair in the living room and sometimes I sleep for another 2 hours and that's it, the position start to cause intense pain as well.

When I can I'll drive somewhere nice and have a family day. I cannot walk as much as my son and his girlfriend but we are all happy to leave me with a book and they can go for a longer walk.

Then, drive home, have something to eat, intake my Methotrexate and fall a sleep on the chair. Every three weeks I need get up early on a Monday because my blood tests and the fourth I have to see my GP.

I'm always in pain, intense pain in every single joint, plus the problem with my L5 that makes my life a misery.

Sometimes I feel lonely even within my family, as I would love to share my life with a friend, companion, lover, but I realized that is not possible.

Since I was diagnose with severe RA in 2006 I had had two partners that at some point left me because they couldn't imagine themselves in the future to be carers of a partner. So, yes I let them go as easy as they come and I would never take any back after their words and even more actions.

I'm happy alone, I'm independent, have a job, a car and at the moment look for a flat in fact. Well, if someone know about a flat in London, affordable of course, it would be very nice. I need two bedrooms because my son and his girlfriend don't want me to be alone.

Of course that one day they will be able and ready to follow their own steps and I believe they must. I'll be happy if they are not going too far, as will be nice that one day when I'll become a grandmother to be able to reach my grandchildren in a easy drive.

I wish to be a grandmother, but not yet, first I want that my four children, my two sons and respective fiances to achieve a successful life, very happy as they are now and enjoy the time for each other and then kids will come in good time for me to spoil of course.

I just like to ask, what do you really think about my little life and how's yours.

Are you discriminated at work. How do you co-op.

Please share and if any good advise, it will be taken with much consideration.

However, I strongly believe that most of us with RA are very strong people.

What you think?

Be well and keep smiling, as I discover that smiling confuses people. I think is because they forgot how to do it.

I'll be back soon to see your reaction.

Best wishes to all, from my heart.

Teresa

[sylvi]

Teresa,first off your one very brave and strong lady. Are you in a union if so i would get them involved as you aare being discriminated against. There is a thing called the disablity act. You can't be passed over because you have ra especially as you are more experienced than those who you work with.

You are lucky in that your son and his girlfriend are willing to help you and that they understand.

I wish i could say it will get easier,but sadly it won't. You are very optomistic and i admire your attitude,you are an inspiration to others who are only now coming to terms with this disease.

My best wishes to you and your family,you sound like a great bunch of people.

Sylvi.xx

[Hidden]

I dont know how you can do such long hours it sounds so demanding x

I only work part time now xx

[allanah]

Hi Teresa, I have just read your blog and you did ask for a reaction,!!! I almost felt like i had been transported back to the 1930's. You work all these hours, with no hope of promotion and carry out work with no special adaptions and no special footwear. You deal with a stressful job and the public and get no special time off for your appointments for your illness.

Now when you read this I bet you think this is normal, well its not. I think you are a very highly intelligent qualified and professional person who has let this manager bully and harass you, and even although you appear to acknowledge that you are being treated like you are in the army and being passed by for promotion, he has made you feel that there is nothing you can do about it. There is, but you have to be brave.

I am saying this as i was once in this position and didn't act on it and just left the job, on reflection that did not help me or the staff now putting up with this dreadful management. Now i know about the Bullying and Harassment policies which your company should have in place which can help you, I know its very difficult as they tend to make you feel that you are the one not coping ie as you have an illness, and thats how these bullies win, well i THINK YOU ARE AMAZING doing all this without support at work.

Maybe contact the citizens advice bureau for more advice, or a personnel officer if your company has one, although i suspect not as this behavior has not been stopped and your managers boss should have noticed that you are more senior to the staff that have been employed over you. I do suspect however that complaints about him may have been raised in the past and your complaint could make all the difference. I feel if you contact someone in the company that you can talk too, this may be helpful. Do you have a union, if so give them a ring and they will back you up, but i know a lot of private firms dont encourage union membership ,so then they get away with this type of maltreatment.

The disability act can help and the Disabilty Alliance site has plenty of advice online for you to look at.I notice you work 12 hours a day, do you get proper breaks for these hours, if not, why not? And with RA how do you manage all those hours, maybe talk to your managers boss and ask for part time work? I know you think this sounds difficult, it is , but wouldn't it be worth it, and i bet you work collegues feel very similar to you.

So then you tell us about how your amazing son does all the cooking and helps you dress, maybe you could apply for Disability living allowance which you can claim even if your are working.and even see if you are entitled to help with rent or rates, CAB could advise you ,

RA cause you to be exhausted and you mention you see your GP for treatment which after all this time is methotexate and you are still in constant pain. Maybe you could suggest that this treatment isn't helping enough and even see a specialist Rheumatologist, as in this day and age there are so many other treatments where you shouldn't have to be always in terrible pain and have you seen the spinal doctors for specialist treatment for your L5 problem, that could really help.Stress is a well known trigger for worsening your RA symptoms and you appear to be under a lot of stress at work and with your illness and the best way to deal with that is to act upon these things causing you stress, get specialist treatment and sort out your manager. Yes I know thats easier said then done!!! But with all the help thats out there things can only get better. If you haven't talked to the NRAs helpline then they are wonderfully helpful too and can direct you to lots of help.

I'm glad your family sound so caring as thats such a big plus isn't it! I really feel for you in this situation and hope you can find the strength in yourself to look into some of the help available, you seem to care so much about others, maybe now its time to care for yourself. Oh and I hope this isn't too much of a reaction for you lol

let us know how u get on Axx

[Hidden]

Hello Theresa, there is little i can add to what Allanah said, i think she has covered everything. I can just tell you what my work expereince is. I get up about 6 to 6.30 to loosen up and get drugs working - in these bright mornings it is nice and quiet and peaceful. I get ready and then get the girls up (6 and 10) they are quite self sufficient now though it still really annoys me that at that time of the morning i can't do their hair. I drive about 20 miles to work to get in at 9 but they are quite flexible about time with everyone. My work is on one storey and completely fitted for people with disabilities (it is a centre for people with brain injury) I am office based and spend my day at the computer. I also have permission to spend one day working from home. We don't have a lunch break but we can leave at 4.30 which gets me home about 5.30. I collect the children and buy all prepacked stuff so no cutting or slicing is required and dinner is usally ready for about 6.30. Husband clears up whilst i help iwth the homework and go to bed between 8 and 9.

Theresa i can honestly say that despite a number of disagreements about one thing and another, i don't think my disabiltiy is taken into account regarding anything which i know is a really good thing. Lately i put in applications for 2 other posts and i got interviews for both. However, i was offered neither job and when looking back i am so glad as i could not have parked outside the front door, there were stairs etc etc so i am aware that i am very well off with regard to my working environment.

Work means a lot to me, like most people i need the money and i wouldn't be able to do alot at home so i would feel a bit useless - my husbands works all hours. I have also been able to get a lady who comes in 3 hours a week to help with housework and that is such a blessing as it takes alot of guilt of me.

Your drive home does strike a chord with me too - i hate having to get petrol as there are times i can't push in the petrol pump as needed and taking the petrol top off is such a painful exercise. I always try to get those pumps that you can pay at so i don't have to walk into the shop which is usually a pain after sitting in the car for a while.

I take it that it is a private company that you work for. Is there a personnell dept or like Sylvi says perhaps a Union where you could get someone to speak for you and tell your manager that you do have rights. I am so aware that having a disability act doesn't mean that your company bides by it and sometimes it is simply too stressful to fight against an intimidating manager but i suppose you do have to weigh up the pros and cons. You are obviously being blatantly discriminated against becasue of having ra, he has obviously no idea of any employment acts.

I know i am repeating what others are saying but it is so strange to me that you are still having pain whilst on a dmard, the consultant should be either adding another one to it or putting you on a different one. Or your gp should be reassessing your pain relief. I know i get mine changed every three or four months as they become less effective over time.

I have went on for quite a bit there sorry - i really hope you do get sorted out.

[allanah]

Happy mothers day, you deserve it xx

Axx

[oldtimer]

Reading all that made me think how lucky I have been.

When I first had RA aged 36, I decided that my career plans would have to change and I looked for and found other posts which didn't involve the physical work, or being on call at night. It did mean that I had to be mobile - I moved house a lot in the early days to find the right jobs and had to be assertive about not doing on-call work. Even so, I often found that I was working longer hours, but I could pace myself better.

Unfortunately the choice of jobs has meant that, now I'm retired my pension is much smaller -but it's enough to live on, so who cares if I can't go on long holidays (I couldn't anyway with the health problems!),

Best of luck with sorting out where you go from here - it sounds as if you do need to find a new post either within your present workplace or somewhere, and have your disabilities catered for.

[Victoria-NRAS Partner Moderator NRAS]

Hi Theresa

Have you read our work booklet? It might help to give you an understanding of what your rights are at work. You can read, download or order it here:

nras.org.uk/help_for_you/pu...

Kind regards

Victoria

[LavendarLady]

Hi Theresa, I was a very busy Barrister when diagnosed with RA and could not take time off particularly if I was in the middle of a trial. Just had to carry on regardless and hope I could get through the day without letting out screams of agony every time I moved. I did find my colleagues very helpful. Benches in most court rooms are low so the Usher would rush to get me a cushion. In some courts I had a special chair made available and a stand for my law books and papers. Everyone did their best to help me. sometimes I was so tired I couldn't get my robes and wig off so colleagues helped me with that as well and female colleagues brushed my hair out for me and put it back into a pony tail. (Hair under a wig ends up wet and limp at the end of the day!).

Your bosses sound as if you are working down a mine in the 18th century!

The company has clearly never heard of the Equality Act (which replaced the Disability Discrimination Act). If you contact a CAB near to you, they will be happy to give you advice on employment rights. You can also go on line to their Advice Guide website, click on employment and you can check through your rights there. Also click on Disability for more information or go onto the direct.gov site which gives loads of information.

I eventually cut down my working days to 3 per week and only took on short 1 day trials which were unlikely to go over but if they did, the court fitted it round my working time which was very good of them. I finally retired in December 2010 and now do two days a week at CAB as an adviser which I find enough to cope with + the work I do at home for various charities etc.

Hope you get things sorted soon. They really are dinosaurs. LavendarLady x