So just to update my previous post ...
I have been informed today that despite having lupus, receiving letter for flu jab and having to get 2 lots of public transport to get to work, I have to get there. NHS Occ Health person said “you are increased risk but are you happy with having to go to work” When I said no, not really but I’m even less happy with having to get on public transport to get there”she replied “I don’t really care about that” 🤷♀️🤷♀️ Charming!!
She certainly has a way with words - NOT, I woudnt be happy either getting public transport, are you on any medication for your lupus? X
Haha, I know, such a charmer! 😂 I only take hydroxychloroquine but I feel like I’m fighting a losing battle as people don’t seem to understand what lupus actually is 🤷♀️ X
I can so relate to this as over the past year I've had lots of situations where people i think maybe some make assumptions I'm faking being disabled as I can often look ok on the outside ( which is a real plus I believe ) but my whole body in agony with all the varying chronic conditions Lupus came with in 2011. I use a walking stick when out and about for support with my mobility in particular when the mytotsis is in flare up and having fractured my coxex few years back when my legs suddenly gave way one day in our garden one evening so I'm very mindful and cautious when out and about in a flare up.
In the past year I've had several conversations in particular with store managers & others in the community when assumptions have been made about me as I look 'non disabled'.
Sainsburies last year gave me a green flowery thing to wear around my neck when shopping so if I need to ask staff for help they will know I'm disabled without my having to explain I was told by a manager.
sadly in my experience most workers actually unaware of this shops strategy/incentive to help vulnerable shoppers so to date I've still had to explain my need for help many a time.
Aside from wearing a placard stating the not so obvious needs perhaps which i wouldn't do as it would heighten rather than lessen my feelings of embarrassment etc in needing help.
I'm learning to ask for help when needed and still learning how to explain why I need help and support without going into my life story. That despite my looking ok on the outside I'm actually in agony often in my body and factually very vulnerable. I can need support some days more than others as some of the conditions can be at times i find be so unnpredicable, in one day I'm okish then next day or even later the same day I'm not so good.
When Ive got the energy and time to explain my predicament to those making assumptions I've found most people are really apologetic & then supportive but others I've found in my experience sadly couldn't care less.
Such is life I think. Some people are selfish and dont want to change whilst others will once they know and understand will be more supportive etc. More awareness raising needs to be done of the invisibility of some disabilities. Knowledge is power and empowers everybody who.choses to take it on board and is willing to learn and adapt where and when needed.
Gosh I've talked lots, hoping not too much?? I blame the steroids but I am really quite a chatty person by nature😊
Stay well and safe and have a good day.
Hi Ronie23
I had a very similar experience..
As I am taking immune suppressants I rang my GP surgery for advice and was informed yes I was high risk but "should" be ok to go to work and catch public transport..
(I wonder if they had much experience of using it as my bus is usually packed to the rafters 😜)..advised me to keep my distance on the bus??
Anyway I decided against it and was fully supported by my brilliant NHS manager.. by chance my ward became the nominated Covid ward (they were willing to move me if I wanted to..)
The following week I received my letter which I understand came from GP to remain s
At home for 12 weeks..
I'm sorry to hear such a flippant comment and wonder if you can speak with your GP or Union rep (if you have one) for further advice?An understanding manager?
Take care 🌻🌻🌻🦋
I understand why you feel like it..its all so stressful..
I wish you well and hope you can find someone to listen and understand how your feeling..I don't know your role but is it possible to work from home at all?
Take care 🦋
Hiya Ronie23 as we come under the equality and disability act you can apply on the government "access to work", and they apparently arrange free transport to and from work, also if you require assistance to aid you once in work, this can also be arranged.
Have a look and see where you stand. OCC health have been fabulous with me, the journey to get to this point has been horrendous.
Hey Dicky-ticker, that’s good news that your Occ H have been helpful 😁 I just felt that they didn’t care about the person, all she wanted to do was tick a box. Also when I told my manager about my fears re public transport she said “do you want me to put a trailer on my car and come and pick you up” 🤷♀️🤷♀️ Feeling a bit demoralised to say the least!
Good luck, prior to me speaking to OCC health all my manager said was "you're untenable, we cannot accommodate you" and offered dismissal through ill health or early retirement through ill health. I'm 54 so non of the above was appropriate.
Employers need to remind themselves about care and compassion these days...and I work for the NHS.
Yeah, me too. I think managers are a law unto themselves. Of course, my manager has been off with stress 🙄 and just pleases herself when she comes and goes! Makes me sooooooo angry!! 😤😤
I had a similar retort from GP Receptionist “you are vulnerable but not my priority” !
Update
Update on weaning off Prednisolone - Methotrexate- any good?
Quick update
Update on health situation: Remission ??Re : Update on Health situation!
