I haven't posted for a week or two because I've been in the throes of a very nasty PMR flare which left me in great pain and struggling to walk. At the same time my OA of the spine and pain from bulging disks went into overdrive and I was despairing. My friend , who I hadn't seen for 10 days came to see me just burst into tears. I thought my spine had degenerated to a 'red flag' situation.
I had been waiting for a rheumy appointment (for months), but last Monday I went to see her privately. Definitely not a rapid degeneration of my spine.
The burn on my foot which I had sustained in Minorca (plus a torn calf muscle) had caused a huge flare of everything.
Rheumy put me back to 20mg pred for two weeks. Then 17.5mg for two weeks. Then 15mg for 4 weeks, then 1mg taper per month.
I will in fact taper very slowly from 15"mg.
Already I am walking more freely and am in very much less pain. PMR pain managed - just sorting out the various bits and pieces of other pain
Then yesterday I got an email telling me my blue badge application had been approved. I will receive it in about 10days. What a relief!
Some of you will remember the humiliation i felt at the 'independent assessment' re my badge, being made to stagger round a public library amongst the readers and children, while being timed by stop-watch.
Despite the success of my application I will be making a formal complaint on everyone's behalf about the process. If I, a strong woman, can be reduced to helpless tears by it, those in charge of the system need to know.
Sorry for the long post but so gad to be back amongst the hopeful living again. 🌷🌷🌷👍
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Oxford8
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Congratulations on getting the blue badge! I hope you continue to improve, you've had a rough time. Best wishes.
That's not good new that a flare caused such pain but glad your pred was adjusted.
After that assessment I would have been fuming if no badge. So take it easy, recover and enjoy not having to always walk miles to the shops/drs/ chemist etc. Best wishes. 🌻📯
Nice to see you back again, and with some good news about the blue badge. I find that it's difficult to post when things are bad and probably I need the most support so I'm glad you had a real friend to help you. Take care!
So glad you got your blue badge. Also pleased to hear you are making a complaint about your very public assessment. I know from experience how hard it is to pursue these things when you are not feeling well. Hope your blue badge helps you to get out and about, when you feel up to it, like it has me x
Partial good news 💐- let’s hope everything else follows suit!
Christine, glad to hear you have your Blue Badge at last!
Good decision to go & see your Consultant privately to get your spine checked out& pleases you have a regime with the Pred to hopefully hit it on the head & then taper down again.
When all the Stars conspire against you, it’s jolly hard to get yourself back on an even keel, says Ashe with a perpetual kidney infection & flaring PMR, l have a Cystoscopy booked for the 14th 😖 & the Rheumatologist on 24th(ish) so hopefully l too can get sorted out!
Great that you got your blue badge , and that you are going to complain because sometimes it’s easier just to think the outcome is right, whereas you may save others from the humiliation they put you through x
You poor, poor thing! I am sorry you’ve been suffering so much. I am glad you are still feisty enough to complain about the humiliating treatment people are being subjected to, just to obtain a blue badge. More power to you!
Don't ever apologise for a post , we love to hear from you , good news and bad , we like to see how you are getting on.
Please do post if you feel up to it in future when you are at your worst just in case we can help with some supportive words not just advice.
So glad to hear the increase has started to help , you will be able to tell if you need anymore help with your pain from other areas soon when you have at least one type of inflammation in control.
Thank you for offering to put a complaint in about your awful treatment in getting a blue badge , I am about to encounter this , and glad to know what humiliation I might be forced to endure before the event , if for no other reason that I will be prepared with added serenity to stop me kicking them in the pants!.
Of course , if I gave assessors what they deserved they would probably decline me my badge on the grounds of ability.
It really will take alot of people experiencing this sort of treatment complaining regularly to make a change , so your effort will make a difference.
Take care and let's hope a little more sun will shine on you soon
Before you go, remember that the assessor is only interested in short answers which involve how many yards you can manage to walk. Apparently,
locally, 15 yards was the number. I didn"t know that until afterwards and I now know why the assessor was so fixated on getting me to answer that question. I kept trying to explain,
through my tears of anger and frustration that PMR isn't bound by rules like that. One day I might be able to walk to my car without pain, but on another I could only stagger to it. I told her that I could only shop on those days if I could find a space near a trolly park do I could lean on the trolley to get me into and around the store. I said standing was difficult for more than a few minutes, let alone walking.
'Yes, but I need to know how many yards you can walk'.
Silent screams from me.
Good luck Bee - and do emphasise how things are on your worst days.
Obviously not a very sensible person - their job to measure! You job to say what you can do.
What you are supposed to use is your worst day scenario. But 15 yards is ridiculous - it's more than that to get from a parking slace to the shop door most places!
Good to hear an explanation and increase in pred to alleviate your condition. So sorry you had to be humilated to get your blue badge. Nothing surprises me anymore in Oxfordshire where resources seem to be metered out Scroogely. I regard myself as a strong respected professional woman but ended up crying over everyone begging for help in extreme pain. I eventually only got a referral for a hip replacement after a wonderful private physio got me to a consultant, this was after I had private MRI evidence I doubt the GP even looked at. I'm now in recovery having had the operation privately. As a life long believer in the NHS this sticks in my gut, but I'd have flung myself off the nearest bridge if I could have got there as in excruciating pain. Frankly i'm shocked at the awful decline in our Social Services and NHS. The consultant said the waiting lists are only reduced by desparate people going private... you could say he would say that, but it makes sense to me now. I now believe in post code lottery and will bear this in mind for my last retirement move to ensure I get the medical I need as I age. So good to hear u finally got what you needed.
It allows you to park in car parks for free , in disability marked spots and in places that aren't usually designated to for parking so you don't get ticketed for doing it.
So glad she got it. I think I will apply for the card here that allows one to park in the designated disability slots. I would hope not to have to use it, but it would be very handy to have in an emergency,
Congratulations Oxford on getting your much needed blue badge - you 'give it to them' for such disgraceful treatment! The genuine ones always seem to get knocked back.
I hope you continue to improve - the private consultation was well worth it - shame it has to come to that though. Best wishes.
Hi Oxford8.... Sorry you've had such a rough time... Hope you're back on an even keel very soon... Great news on Blue Badge though... I was thinking about applying for one, but having read your distressing post, I really didn't want to put myself through that! Just very happy for you.... Hope you will soon be out and about, flashing your well earned Blue Badge 😊... Take care and keep us updated....
Oxford, so glad you now have the badge without having to appeal, but that doesn’t mean that the way it was assessed could ever be considered acceptable. It’s pretty obvious from your subsequent comment in this thread that the physiotherapist carrying out that ritual humiliation didn’t have a clue what PMR actually was, and officially reporting your experience may help others in the future.
Condolences on your flare. I’ve read enough on here about flares over the past 3 years but never having had a full blown one myself didn’t fully appreciate the impact. Went blithely on under the impression that if I knowingly overdid things I’d pay for it for a few days afterwards. Wrong! Having had what my GP described as ‘a proper episode’ for an exhaustingly long chunk of this year I now really do understand. And yours wasn’t even self inflicted - with Factor 50 nobody expects serious burns on the foot whilst on holiday.
I do hope that the rest of the year brings you a simpler and easier time. x
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