Rheumatoid Arthritis/fear of losing my Job

Bones, joints and muscles
1

I urgently need some advice and support. I have been newly diagnosed with Rheumatoid Arthritis since May 2011 after my Mother suddenly died. My condition is getting progressively worse and I am really scared both because I cannot control the condition and because I have been on long term sick and my Manager has given me a caution of termination recently ie if I do not return to work in 4 weeks my employment will be terminated despite me repeatedly explaining to her that I am proactively accepting all medication and physical treatment suggested by all professions in my care plan to overcome this condition and thus return to work. I also explained sensitively almost apologising that my condition as explained to me by my specialist nurse and rheumatology consultant comes under the equality act 2010. My manager has offered me a desk job last week but I am still unfit for work according to my Occupational Health Adviser and my GP.

My concern is that I am taking so many different types of medications for this condition, pain relief, side effects medications and methotrexate. The methotrexate does not agree with me. I feel sick, chronically tired, rashes on hands etc. Have been told it is short term, been on it for 3 months some side effects have reduced eg diahorrea. My Methotrexate has suddenly increased this from 7.5mg to 15mg and my consultant is trying to get it up to 30mg within 8 weeks because my condition is rapidly getting worse and worse.

What makes all this a complete nightmare is that my manager has no sympathy and the Union I belong to agrees that sickness procedures are being followed so I could be looking at being unemployed after 15 years of service although my last Occupational Health report says I should be sufficiently fit to resume work in 3 months time, i.e. end of April 2012 but my Manager is still talking to her manager about my termination as she feels the wait is too long. This upsets me sorely and all I think about is work and losing my job when I should be trying to recuperate and heal. I feel overwhelmed and unjustly treated yet my manager comes across so nice on the phone but always ends the conversation with “it’s out of my hands and I have not dealt with this before and being instructed by Human Resources” to what she is doing which makes me feels sorry for her and blame myself for not healing quick enough.

My manager rings me once a week and this does not make me feel good. She says its part of the sickness procedures and when I read the sickness procedures it does say this.

My Occupational Health Advisor is ok on most levels but does not always write up the reports as fully as is reflected in my reviews and case conferences and this worries me a lot. Although she said I should be able to return to work in 3 months time she also suggested early medical retirement but did not put this in the report. I was shocked she suggested this but at the same time I have been off work since May 2011 and its Feb 2012 so I do understand my continual absent is having an effect on the team and organisation but am not near retirement age at all. I have relayed this to my Manager but she changed the subject.

I have been on the internet researching who can represent me and talk on my behalf as both my self esteem, motivation is very low due to the constant pain I am in and the extreme tiredness I feel and the feeling of carrying this on my own. I feel I am just waiting to get a letter telling me my job has been terminated.

I am not a victim and never have been but somehow I cannot get my strength to fight this and know I am not being treated fairly. It also feels for me that my manager does not believe that I have this condition. I do look well considering the intensity of my condition.

I have contacted the National Rheumatoid Arthritis society many times and they have been very very helpful in listening to me and giving me information leaflets for my manager which I did. My manager accepted the leaflet and was happy to read about the condition but still continues to proceed with my termination.

As anyone experience this and how did they manage it?? Who did you get to represent you? I would really appreciate some advice and tips on how to move forward with this as I do not really want to lose my job but the more my manager treats me this way I feel pressurised to leave and/or leave on their terms. And to make it worse I work for the NHS/Social Services and thought from my naïve perspective they would understand what I am going through but instead appear to be taking advantage of my vulnerability and non supportive network to represent me. Am not sure if its offered to me again to take early medical retirement and just forget about work???

Lastly I do understand the cuts in government at the moment and the pressure on jobs and my condition and long term sickness creates many problems but its not as if I have been sitting at home all day watching TV. I do so many weekly events, such as physiotherapy, hydro therapy, pain clinic, counselling, seeing my GP weekly re my side effects, specialist nurse etc. My week schedule is very busy and combined with my tiredness can be tough but I am slowly progressing in my mind, e.g. stiffness in mornings has reduced from 3 hours to 1 hour etc.

I know this email is quite long and I thank you in advance for reading it and would appreciate any advice at all especially for someone to represent me regarding work issues just so some of the pressure is taken off my shoulders for awhile. Thank you. Barbara

2

Hi! Barbara... Firstly, losing your mother must've been a huge shock to your system and you mentioned that you were diagnosed with rheumatoid arthritis shortly after losing her, which makes me wonder whether another condition brought on this form of (muscular) arthritis. Sure enough, it can be quite debilitating and then there's the side-effects from the medication to tolerate! I do sympathise with you but, I also wonder whether you have had a chat with your GP about how losing your mother might've effected you... Were you offered any bereavement counselling? Were you treated for depression and anxiety? You could also chat to your company's Human Resources Department about arranging a meeting with your boss to discuss a 'staggered' return to work... Part-time initially to see how you get on with managing any new role. They do seem to be showing you a resonable amount of respect and I feel sure they would want to see you return to the workplace at the earliest opportunity. Perhaps it would do you good to get back into the saddle so to speak... It may even take your mind off of the discomfort your in and being given the chance to try a different role needn't be challenging! Most companies do all they can to accomodate employees with particular workplace needs and can even complete a work station risk assessment with you resulting in the provision of certain items to ease your time at work for example, a comfortable chair, foot rest, etc. Honestly, I think this diagnosis has been all consuming and you need to find yourself again... If you understand where I'm coming from as it does seem that a great deal of your time is being taken up with treatments, etc. I do hope that our little chat will help you decide what's best for you in the long-term... Please consider giving the work opportunity a go as you've nothing to lose from at least trying it. Take care of yourself : )

3

hi barbara. my name is Adam. Firstly sorry to hear about your mother, if you would like to call me sometime i would enjoy the oppourtunity to share some thoughts with you that may help with your condition and work situation...My mother has suffered with rhumatoid for over 30 years now and her spirit amazing me everyday, although i cant fully understand how you must feel it would be nice to talk.

my number is xxx

best wishes Adam

Emis Moderator comment: I have removed a telephone number from this post as it is our policy not to display personal details.

4

Hi Maddi and thank you for kindly for responding to my concerns.

Just to say that yes I have had bereavement counselling and continue to do so.

My physical condition at the moment is such that every step and bend I take is extremely painful. I do physical treatment in order to exercise and to keep moving even when I am in pain to avoid being so stiff making moving difficult. I am positive and continue to be.

I am presuming you have experienced Rheumatoid Arthritis and the intensity of the pain can almost make you feel giddy with faintness which is what I am experiencing 24/7 but still attending these sessions which last for about 35/50 minutes and leaves me almost breathless with tiredness afterwards. I would love to go back to work and “get back on the saddle “as you put it but this is unrealistic at this stage.

I have pointed a return to work both to my Consultants, i.e. Rheumatology and Chronic Pain clinic, GP and Occupational Health but all say that because the arthritis is so active now it is important that it is under control first before I embark back to work. Trust me returning to work is something that I would very much like to do which I may not have made clear in my last email.

Again the medication side effects are awful and serious and this too has to settle. So it not just a matter of going back to work.

In some ways your email response makes me feel that you do not understand what I am going through??? I was hoping to get some ideas how to cope with the condition and ideas about keeping my job.

Of course a natural pre-requisite of both my condition and bereavement would create worry, low feelings and even depression but as you can see in my last email I am being very proactive in every area both emotional and practical in order to heal holistically on every level so I am stronger to go back to work part time then full time without having to take more time of sick due to flare ups. This condition does make you feel very tired too so pacing is very important.

I have done so much research as well on my condition via internet as and when I can to get a better understanding of the correlation and cause and effect and even looking at how food plays a role.

I do understand your response but fail to see how just going back to work in the way you suggest would help me considering my physical condition I am in at present. I have been given crutches to use but cannot use them as both my wrists are very swollen and weak and Ihave to wear splints to support them so it is a juggle to mobilise myself. This is the reason why physio and hydrotherapy is good as it helps with moving, how to use the crutches without experiencing pain and to reduce the stiffness to increase my mobility but I have been told repeatedly that it is not just going to get better overnight.

I am impatient and thought this condition would get better a lot sooner than it is taking and trust me it is very frustrating and worrying and complete nightmare to have to be on this journey. Even peaceful sleeping is not possible as I have to be moved every 2 hours to avoid my body being so stiff cannot move.

Typing is painful but I have a great carer who does this for me and this makes me feel less incapable and have a certain outlet to express myself.

According to the umpteen blood tests, X rays, MRI scans etc that I have had the findings are not so positive so I am doing extremely well despite what I have said so far and this is what I positively focus on.

I do think middle to longer terms aims that your return to work of course is my aim but in the short term it is about managing my condition in all areas and to do this without stress and agenda of politics of work and trying to get rid of me without offering me realistic reasonable adjustments which is effective, i.e. the desk job would be in a building that is not wheel chair access, no lift, and to get to the office I would have to go down up and down steep stairs.

I hope this paints a

5

sorry Maddid the end should read

I hope this paints a better picture of where I am now and if there is any other advice you can offer I would really appreciate it.

Thank you

Barbara

6

Hi! Barbara... I am glad that you are receiving all the help you need to manage your condition in the short term. It is difficult to comment on any person's situation without being aware of all the facts... However, if you were not able to return to your present workplace employer, but wanted to be able to work at some point in the future/once your condition has stabilised, your local JobCentre+ should be able to arrange for you to see a Disability Employment Advisor. I did lose my job because of a serious and debilitating illness which needed major surgery and I have been away from the employment market for over a year now. At times, I felt very low and it was difficult to try and keep a positive outlook. I only wish the very best for you and your health and I do hope that you receive the advice and guidance you need to know how to deal with your situation long-term... I wonder if you have thought about contacting ACAS who may offer some advice about early retirement on medical grounds, etc. Take care of yourself : ) x

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Hi Maddi, thank you

Barbara

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@ Adam, please do write your advice here so I can read it rather than for me to phone you.

It would also be beneficial, am sure to other fellow RA sufferers.

Many thanks, Barbara

9

Hi,

One of my suggestions would be the use of stabilised aloe vera gel. Although i do work within the health and nutrition please dont feel this is a pitch hence the reason i didnt want to advertise myself on here and talk personally. Its a natural recommendation for its anti inflammoratry compounds as well as helping to control the immune system. My family member has taken the gel and her energy levels have improved dramatically as well, rather then the constant tiredness and know other people that have come off methotrexate and other medication, but that is their findings. If you would like to know more i would be happy to discuss further on the phone. There would be nothing to lose and alot to gain.

10

Hi Adam thank you.

I am also looking into the role of alternative remedies and have found so far there is an awful lot of information and research findings like you mention. I am experimenting with various natural products and have a nutritionalist at hand to give me advise too.

Again I thank you and thank you for sharing as I am sure not just me would benefit from your suggestion.

11

Your welcome Barbara,

Theres was been in particular some remarkable results with this and aswell for osteo. If you would like to now more about it email at:

xxx

There is alot of information out there and from my family and friends experience over the last 30 years is that not alot has helped in particular but this has made a big impact to how they feel. I can forward you through email testimonials, leaflets and videos to watch, that are closely related to this.

Just ask if i can help in anyway.

Adam

Emis Moderator comment: I have removed the email address as it is our policy not to display personal details.

12

Hi Adam, thank you but you sound like a business company......shame really..

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Hi Barbara

As openly mentioned I work in health and nutrition and didnt want to come across that way, hence the reason for not wanting to talk so openly about it without sounding like that.

There has been some remarkable natural results, for family and friends feeling the benefits of using stabilised aloe vera hence my interest in it. I was just wanting to share more information if you decide it was of any value to you.

Apoligies, I wish you well.

Adam

Adam

14

Hi Barbara, saw your post and thought I would reply as I can empathise with your situation. I am 43 and

have Seronegative RA, fibromyalgia and Osteoarthritis. I work for local government and was wondering if you do too? Under DDA they should make all reasonable adjustments to accommodate you in being

able to continue with your current job.

I had to reduce down to 3 days a week and take a £10000 paycut in the process, which is stressful in

itself. My employers then agreed for me to work from home for 2 out of the 3 days and I was set up with

all the equipment required. They also ensure I have any other things required to make things easier. I am very lucky in this respect.

However! As you will know, with these illnesses nothing is straightforward and my sickness has meant

that last year I was given a final warning - this totally devastated me, but was done purely as they had to

follow sickness procedure. This has now lapsed back to a warning, but I am bad again at the moment so who knows how long it will be before I revert back to a final warning again!

All the added stress of this only makes our illnesses worse, so it is a vicious circle really.

It is difficult to say what you should be entitled to at work Barbara without knowing more about what job

you do but you need to ensure that they have done everything possible to accomodate you.

Have you been given warnings etc already?

I appreciate it has been a couple of months since the last post so I do hope you have managed to get some resolution.

Big hugs

xxx

15

Hi, I am newly diagnosed with RA, and am interested in natural ways for treatment. I see you recommended stabilized aloe Vera gel. I want to learn everything I can on this. I currently use mangosteen juice, vitamin D, fish oil, and probiotics. I have gone gluten free and dairy free, and have been doing this for about 3 weeks. My pain started in my hands and feet about 6 weeks ago and I see a Rheumatologist in 2 weeks. It may just be coincidence, but I am feeling better already with minimal pain. I would love to hear more of what you may be able to share about RA. Thanks,

16

Here is a concoction that will reverse your symptoms of RA and change your life. 1 tablespoon of organic cocunut oil. Then drink 12-18oz of water mixed with 1tbsp of organic honey, 1tsp turmeric and 1/2tsp of black pepper and a half of organic lemon. Drink this 2-3 times a day preferably on an empty stomach for a couple of weeks and you will be a new person.