Was having a good day until....

[wendana82]

Hi everyone,

My first time posting here, I usually just watch and follow but today something happened that just pushed me over the edge emotionally. I have had RA for 3 years (started 1 month after my mum passed) and it took 8 months to diagnose. There is not one joint in my body that is not affected and I take arcoxia, plaquenil, MTX injection and started Humira around 4 months ago. Anyway- I work full time and no matter how much pain i'm in anywhere in my body or how exhausted I feel,I push myself and I go to work everyday (unless my feet are so swollen I can't even stand up out of bed). I have been through occupational health who have ensured my work provides me with equipment I need to do my job which is great. In the last few weeks my manager has insisted I use one of the 2 disabled parking spaces at the back of work as the weather has been awful and I've been having flares and she saw me struggle to walk. Now I don't let everyone at work know my business and I would neveradmit to anyone what my OH has to do for me at home, but with chinese whispers I'm sure most people know I have what they probably think is the arthritis their granny has sometimes, they see me limp,hobble,practically crawl down the office sometimes, they see me drop things, struggle with doors and taps and carrying a single cup or file, but yet someone anonymous made it their business to complain that I was parked in one of these spots. I have never thought about ever getting a disabled badge, anytime it has been suggested before I guess I have felt myself to be unworthy of it and in a way it is like giving in and maybe having to accept yes I have a disability. Big boss now wants a letter from doc or disabled badge for me to park there anytime I need and I am really uncomfortable, stuck, lost, angry, frustrated. Maybe my own silly fault for not accepting my disability and enquiring about badge, maybe I'm frustrated with myself that I was lured into the car space in the first place and now it is out of my control, maybe I'm angry and hurt that someone must hate me enough (behind my back of course cos everyones lovely to my face) to want to embarrass and belittle me. Can anyone offer any advice on the parking situation? Is it normal practise for a doctor to write a letter to confirm they feel you need a parking space or should I bite the bullet and apply for a disabled parking permit? Sorry for the rant but you are all the experts (and I have stopped crying now that I've got it out of my system).

Wendy x

[Hidden]

Hello Wendy, I do know exactly how you feel. I haven't got a disability badge either for exactly the same reasons, its like giving in. But I do think we are silly if we need it, we need it and should really go and get it. I am talking to myself as much as you.

We also have a few disabled parking spots at work and I would only park in them during bad times or like today where it is so easy to slip in the bad weather.

People do things in the heat of the moment, I remember one man shouting at me for sitting in a disabled bay outside the chemist because I really couldn't walk much at all. When he saw that i struggled he came over and apologised. Really embarrassing, So it could have been someone who has a disability problem who made the complaint only looking at the car and not knowing you. If that isn't the case then they are a sad miserable sod who has nothing better to do with their time than make problems for others.

Your big boss probably has to get something from you for fear it will be thought that he is making an exception for you.

I reckon that if your doctor knows your problems he will do a letter for you and there should be no problem.

I hope you can put it out of your mind and get a good nights sleep,

[Hidden]

Hi Wendy. I'm glad you got that out and I hope you feel better for it now? I think Mads has said everything I could say brilliantly - especially about whoever reported you.

I did once have to get wheelchaired across the runway last June when my ankle flared so badly I couldn't put weight on it and that was very humiliating I admit and on the same morning I ended up sitting in the disabled seat on a bus on route to the airport because the bus was full and I couldn't stand. When (despite my begging to the gods silently) an old person got on the bus with a zimmer I just didn't know what to do so as she came towards me glaring at this middle aged person sitting in a disabled seat I rose and offered her the chair if I could borrow her zimmer. She nodded and it worked okay but she kept on glaring at me!

I tend to ignore pain too and refuse to let it defeat me but then I'm self employed and am not in much pain these days as the meds are working well for me just now.

The thing is it's not giving in to educate people or to accept human kindness to my mind. I am very defiant about having RA and rarely actually believe I do - so I do understand your unwillingness to give into it. But it's important to save your energy to fight the disease not those around you and the best way to do that if you can, is to be really practical about it. So just apply for a disabled badge (our GPs have a notice saying you can't go to them for this anymore?) and wear it with pride (or rather stick it on your car with pride) and concentrate on making things easier for yourself so you can keep working and preserve your health.

Tilda x

[shirlthegirl]

All i can say is well done, and you so deceive a blue badge, I am only just been diagnosed so it is still hard for me sometimes to accepted that i have RA, I don't know anything about if you are entitled to one, All i can say is ignore people like that they are not worth it..... but you are.... i really hope you get it sorted soon xx

[minka in reply to shirlthegirl]

see my commets shirl below for info

did you look at the cow burger on face book?

[Dotty7]

As your immediate manager was the one who told you to use the space, I'd say s/he should be helping you sort this out. Also if Occ Health have been involved, then possibly your personnel records should already show what your needs are. What a horrible situation to find yourself in.

Dotty xx

[Hidden]

The manager was trying to help but fellow colleagues can be spiteful as I know to well, I have only just reported the bullying three weeks ago which I have been having for two years. Im currently off work as my medication has failed.. and im in agony.. steroid jab has given a little relief..

Blue badges are hard to get I have one and when you are bad they are a god send.

[helixhelix]

What a mean situation to be in...the person who reported it must be a miserable excuse for a person, with nothing in their life if they have time for such petty behaviour. Like others I think your boss just wants to cover his back, and not be in a position where he has to tell someone who needs it not to use the space. Which is weak as if it's the businesses car park, not public highway or local authority, then up to them who parks where and he should have just told anonymous person where to go.

If it was a friend telling you this tale, wouldn't you tell her not to consider for a moment that she doesn't deserve it and apply for a blue badge? In some areas they are very strict, so maybe you won't get it, but why not try anyway? I think you have to have a doctor's letter for the application, so first step would be get that. It's not giving in, but more like calling a plumber to fix a broken boiler...Not sure that makes sense but I mean that the badges are there to solve a problem, which is a problem you have, and not a judgement on you as a person.

Polly

[cathie]

Being labelled as disabled is galling, my sister in law once suggested I get a blue badge and once I stopped smarting I looked into it but didn't qualify. I did have to come home from a work trip to morocco in a wheelchair. At the Moroccan end I had kindness and consideration. Then they handed me over to British airways who were dreadful. Left in plane with the cleaners coming. But it made me see that it depends on how people are towards you that really matters.

[Menorca]

I felt so angry when I read your post, a similar thing happened to me some years back with me having to have a space to stay at work because my hip needed replacing so badly the dr didn't know how I I walked on it. Someone I got on we'll with complained I had been allowed to park in a space which was for managers only. My manager had given me her space bless her, I can remember crying . Now my friend let me give you some strength to fight back. I like you, didn't want a fuss but some people haven't a clue and just think of themselves they properly wouldn't even be at work if it was them feeling the pain RA suffers feel. We have RA we are strong people we fight the pain and like you I drag myself to work every day, we don't want sympathy we want understanding . Get a badge , it will help you to protect your joints, The powers that be only have to have a letter because they have to be seen to be fair, I bet they can see and understand you need it . Your immediate manager sounds great and that's what counts . Get the letter, get the badge think of what helps you to stay at work . Educate those you work with to understand RA affects any age including babies it's not an old persons disease. I'm a manager now and like you I didn't want to stand out for my condition rather than me as a person. I had a flare up and because I had hidden my condition as much as I could I did stupid hours with no consideration for my health. Back it came as if to say you need to slow down , and I had to take about a month off to get it to calm down after having 100% attendance for many years (with the RA) this was hard, . Think of you please , stuff one stupid idiot who is selfish and doesn't understand , I bet your bosses are as disgusted as I am that someone has complained , I wish I had the person complain to me as a manager I would have made them feel ashamed of themselves. Don't hide the fact you sometimes need help we all do hold your head up , you are an amazing person remember that.y

[126Jessie]

Apply for a badge!!!! I'm very similar to you, keep it to myself , need to know basis at work. Lost the plot during a flare when all the disabled parking bays were full of staff with minor issues, mainly ailments that did not prevent their mobility. Pushed me to apply, doc filled in simple letter, met with occ therapist at council who were lovely and awarded me badge and lots of good advice too. It has changed my life . I will now go places as I know there is a good chance I can park close by. Try to turn this negative into a positive and use it to help yourself. I needed a nudge too only took me 13 yrs to apply, and yes I'm 42 and don't always look disabled on first glance but thanks to the support on here woe betide anyone who challenges me now! Good luck! You fight RA everyday, fight for the support you need and deserve xxx

[minka]

hi wendy

let get this sorted i used to do health and safety for union at my company

1/ when you have a disability the company has to make resonable adjustments to accomodate you for working for them.

you manager has seen and knows your condition SO HE HAS DONE THE RIGHT THING under the health and saftey act and the correct thing under the dda ie disability discrimination act. because its their own car park

BY ASKING YOU TO PARK IN A DISABLED SPOT

she has done this to protect the company in case he / she feels its not safe for you to walk to far from the car into work ie what if you tripped or fell on ice (would the company be at fault for not making RESONABLE ADJUSTMENTS. its not just about the blue badge wendy.

i do commend your office manager for taking all resonable precautions under you disabilitys.

if you have an ocupational health service at work they can ask you to do this park in the disabled spot. (what if you had broke both legs and was tempary in a wheel chair would you complain hes using a disabled spot) it would only be for a short time)

its all about peoples health and welfare

then some prat who knows nothing at all pops up and says this id take the bugger outside tie his legs together and say right i want you to walk into work he might get it then

please remember the points above.

im sure im right i think im right.

regards john

[nottsexsportfanatic in reply to minka]

This is correct. I dont get dla so am not eligible for a blue badge but my occ health doctor has written to our health and safety officer to ask that I am placed on their list of people able to use disabked parking bays if im having a flare or if I have lits of resources to carry.

[wendana82 in reply to nottsexsportfanatic]

Thank you, that is helpful

[Shell1967 in reply to nottsexsportfanatic]

Hi I hope this helps you,but I have a blue badge but I do not get dla.you don't need to be in receipt of dla but it does automatically get you a blue badge if you get the mobility component.i applied and got my blue badge within 6 weeks.it helps me a great deal .i hope this helps xx

[sylvi in reply to minka]

Good for you john. its good to have someone on here who knows the ins and out of the law regarding work. xx

[minka in reply to sylvi]

i used to go on course for it from the union to london etc done quite a few cases where one guy they got rid of and i said you cant do that top and bottom was the settled out of court TOLD THEM BUT DIDNT LISTEN.

now im in the same bleeding boat so i now have the other side of the penny sylvi

i do have some presentations ive given somewhere in this computer but ya cant put them on here tells you your right etc etc

[Cathryn]

Unfortunately because of all the fraudsters who have deceived the benefit system and the disabled parking badge system it is no longer very easy to get a blue badge.

You have to apply to your local council and it is usually people who are on the higher rate of DLA that are eligible. Go online to your local council services and there should be the application forms and explanations there.

Good luck and well done for continuing working you are a star and don't let them get you down x

[wendana82]

HI, thank you all for replying. Gosh it's not bad enough that we have this horrible disease that something like this can drain us of all our evergy and positivity. I had convinced myself for a year and a half that I must have a virus that will go away and I'll return to my normal life of cycling to work and DIY etc. I think when I had my Occ Health report done it really only mentioned my hands (an idiot doctor from my surgery completed it who also told me "has anyone ever told you you have high cholesterol?" and then laughed her head off). So maybe it's worth getting that updated too? If anyone has ever done that? I have a Doc appointment on Thursday with the Doctor who was the only one who persisted and diagnosed my RA. Will take OH with me for support. In work I know who ever it was that complained is sad and nosy and a coward. I'm 30 now but I look much younger, I'm slim and "don't look sick" and this has probably led them to think I'm putting it on. I'm angry that that attitude is dictating my next step in my own jouney rather than my own decision to apply for parking badge, and I feel like i'm a pawn in someone else's game.Times like this I wish the movie Freeaky Friday was real and we could swop bodies with someone just so they canexperience what it's like for a day, might make people not so quick to judge. Feel a bit better this morning, just need to dig a wee bit of courage out of somewhere x

[sylvi]

If these people walked in our shoes for a day they would soon change their attitude. ONe day i feel that i can do anything then the next day i can't do anything and i still look the same. I have a blue bagde and i wouldn't be able to get to some of the places i want to go to without it. Higher rate of dla is a requirement. I suggest you apply for dla and if you get refused appeal.

sylvia.xxx

[Shell1967 in reply to sylvi]

Hi sylv I don't get any dla but I applied for a blue badge online to my local council,and within 6 weeks I had it.getting high rate dla gives you automatic eligibility for a blue badge,but you can also get it without dla.my blue badge has helped me enormously already parking nearer to supermarkets etc.xx

[Fussie]

Wendy, Its good to know that your manager is thinking of you and helping where she can. I was wondering if the person who mentioned this to the big boss was someone that is genuinely concerned about you and not moaning about you, and it came across wrong. I know I was trying to find a positive here for you, as I try to in most people. Wether that is naivety or plain stupidity I have no idea. I would like to think that it was someone who wants to help, but doesnt know you well enough to ask if you would like their help. Maybe I am lucky that at my place of work it feels a bit like a family, suffocating at times as everyone tends to know everything about you, but normally there to back you up and help when you need. Do have a look at getting a blue badge even if you will use it on your bad days ... as Tesco says 'Every little helps' Hails xxxx

[tricia1]

So sorry you are feeling so bad. Yes people can be cruel but I was at the beginning not able to walk at all, my husband had to carry me to the bathroom. This is a terrible disease, but after getting the correct meds I feel pretty good. I am on Remicade and my RA is very agressive, but this is working. Hope you feel better. Hang in there!

[Ailsa-NRAS Partner NRAS]

Hi Wendy

I can remember many years ago now, struggling like you, and not wanting to apply for a Blue Badge because I didn't want that lable 'disabled'. However, when I finally did apply and got it, it made my life so much easier in terms of getting to places and shopping that I concluded I had been stupid not to apply before. I think I am right in saying that you can get one if you get the mobility component of DLA, but you should start the ball rolling and speak to your Dr. about getting a letter.

I would also take the bull by the horns and speak to your Manager honestly about what has happened and how you feel. Any responsible employer should do what they can to enable you to park close to the building on days when you need to, blue badge or not. Have you given your employer one of our 'Employer booklets' on work related issues? If not you can get a hard copy by calling NRAS or download a copy from the publications area on our website.

Good luck.

Best wishes

Ailsa

[rozzii]

Hi Wendy, this is my first post but felt like I needed to comment on this awful situation. I have been diagnosed for 6mths now and was told that it wasn't very advanced so didn't need medication. I also work full time and had shared this information with my employers. In November my symptoms changed drastically, joint pain, joints swollen especially my foot and fingers, I have recently had support from the GP for the pain as at times its unbearable. I recently had supervision from my line manager who was very understanding and like your manager offered me a parking space at work so I have less to walk. Fortunately the team of people I work with are great and very understanding of my RA, they help when they can and don't judge. Like you I have ignored the fact that this is a disability and try to keep fighting the symptoms. I'm due to start Plaquenil next week and really hope that it improves my life, I have not even thought about applying for DLA or a blue badge as again I don't see myself as having a disability even though I'm hobbling around like a granny and can't get my shoes on or get myself dressed some days. I hope that the sad person who complained gets there come uppance and that you use the parking space that your entitled to use. Good luck applying for your blue badge.

[helixhelix in reply to rozzii]

I just had to reply to you, as it seems incredible to me that a doctor could say that you had RA on one hand, but "that it wasn't advanced enough to need medication"!!! Everything I read about this disease says that the earlier and more aggressively you treat it, the better the outcome will be for you. So you should have been offered treatment at least, and then it's your choice about whether you take it or not. I really hope Plaquinil works for you, and you stop hobbling soon. From being disabled by this disease, I've been lucky enough that the meds have worked brilliantly so I now longer need to even consider it like that. Polly

[rozzii in reply to helixhelix]

Hi Polly,

Probably didn't explain myself properly, whilst all of the investigations were being done which took about 6 mths and my tests came back positive I was put on Methotrexate which lasted about 3 weeks. This made me feel extremely ill I must say and I was off work for nearly a month. I had numerous other tests done and the consultant said that it was in the very early stages and that I didn't need medication. She told me that if the symptoms started to hang around longer then I would have to start.On My last appointment in December she said that there was a lot of inflammation and that when I finish a course of antibiotics which I was on for 6 weeks, that I would then have to start taking meds. I'm due to go on Tuesday to see the Rheumy nurse. I'm still quite new to all of this so not sure whats right or wrong at the minute, all I know is that I feel I have deteriorated big style over the past 3 mths.

Its good to hear that the meds are working for you and you feel good. Roz

[Terrpist]

Some times it's lack of knowledge people don't understand that one day we look ok ,and the next day we limp, not an excuse just ignorant