A man came today to fix my stairlift. I am a few pounds lighter but strangely weigh the same? I can get to the upstairs toilet and Parker can decamp the festival tent by the front door. It was inside. Whilst waiting for the engineer to finish waving his magic wand over the equipment I decided to do a deep dive (as techies say) in to my inability to have a life and move about. Because of PMR I blame everything that goes wrong medically on that. I think I was pretty much a wreck before PMR it just moved things on faster or at least felt like it. I am also 8 years older. Parker however, has been fit all his adult life except for a few things easily sortable over the years. He smoked 40 cigarettes a day, weighed 17 stone ate lard and drank copious amounts of alcohol due being in the hospitality trade. One day in October 10 years ago that all changed. Suffice it to say he had treatment went in to remission (and still is) . He reinvented himself in time to become Parker for M'Lady. How lucky am I? He lost 7st stopped smoking, drinking and eats like a stick insect. Only eats healthy food and only at meal times. So why am I not a sylph like goddess in his image? He is the fat controller and master of all he sees. Though after the washing debate this morning then quilt cover scenario again!! Seriously though he never blames the cancer or treatment on anything new he has to see the Dr about. Teaching him the NHS app and how the Drs work is a whole new ball game though. I am writing the lesson plan now. Can't blame him for being a bit less able here I've always had the upperhand in computer stuff as I used it in my job.
The NHS is soon changing how we all book appointments and contact the surgery so I will wait till November the 4th for when they introduce the new system at our surgery. I can't fault my Drs. I got an orthopaedic appointment two weeks after requesting it. Parker has had excellent care too. I can get an appointment reasonably easy with the Florey system we have. Some practices across the UK have gone on to this new way of working. You have to fill in a form on line to get an appointment which is not too friendly for the older , disabled or those not IT literate with no support at home. You should still be able to walk in or phone at 8am but there have been difficulties I believe with interpretation of this system in some areas. However its not here yet for me so we shall see.
I digress sorry. After blaming PMR then steroids for everything including the Hurricanes in Florida and all the bad things you hear on the news, I have now decided that if I have the IFUSE operation on my sacroiliac joints I shall have a new lease of life and be able to reduce the pred to a manageable level or even get off them as that will be my sole focus.
My next big hurdle is making the orthopaedic surgeon see what a great idea he has had and how much better it will be not to see me ever again. I am now waiting for my next appointment in a few weeks time.
Meanwhile Parker has to stop trying to jump on the sickey bandwagon with his whingey borderline test results at his annual review and a teeny bit of blood pressure. His prostate is that of an Adonis the Nursey said. He still has many years pandering to this whinger yet!
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Estellemac
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We passed the stairlift man on the Motorway yesterday and said we hoped he was winging his way to M'Lady's mansion - what took him so long?! (This was somewhere along the 300 mile journey en route home from Devon to Yorkshire - that's why it took so long!) Anyway, so glad to know you're out of the camping latrine and back onto your usual throne!
Keeping everything crossed that the orthopod can work his magic on your S I joints and you'll be able to chase Parker up those stairs!
I’ve everything crossed fo this. Parker and I want use all the kids inheritance up enjoying life but not paying for operations. It’s a catch 22 isn’t it?
Love this post Estellemac and admire your resilience!
You’ve reminded me to apply for a blue badge for the car (technically I may not qualify but being unable to uses disability spaces is stopping me from going out of the house….so worth a try).
Good luck with it all and thanks for the good vibes xx
You don't know if you don't ask. Its not always based on Mobility though much easier if you get the higher rate of PIP. Some people who struggle with mental health get Blue Badges. Good luck. Key phrase is not all disabilities are visible.
I'm told by someone who's recently applied that these days the Blue Badge test is you have to drive to a car park (or be driven) and they watch and see how you get out of the car and how far you can walk.
Any idea what kind of walking distance they regard as meeting the criteria? (Though I know it’s not as simple as that).
I’m thinking of times like when my daughter would like to take me shopping, but doesn’t because she can’t park near enough to the shops without me having a blue badge. Or hubby and I don’t go out to concerts or theatre etc for the same reason.
I used to make these kind of applications for people all the time when I was at work - now got to get my head right to do it for myself 🧘♀️xx
In my area you just fill in a form online. The criteria seems to be that you can’t walk over a certain distance but no medical confirmation or physical checks are made
I applied for mine by filling in a form listing reasons why needed one I got mine sent by post and did not have to leave home for it, maybe my ruptured Achilles tendon had something to do with it.
I don’t qualify for PIP (too old) or Attendance Allowance (don’t need enough help). My main mobility problems are lack of stamina and balance - I can walk a few hundred yards with a stick before needing a rest. So I’m not immobile but I am very limited in getting around. So we’ll see….🤞🤞
If you're that limited you probably do qualify for AA. I've successfully applied for it for my dad and stepmother and got myself and others PIP. The tests boil down to whether you can do something safely, repeatedly, and in a reasonable time. Keep a diary and note how you actually do every day things. For example, does it take longer than most to get out of bed and get showered? Does that trigger your illness and leave you fatigued? Do you have to use aids such as a stool, long handled sponges etc. Does somebody have to check you don't fall?
Having successfully filled in many of these forms (including for both my parents) I reckon I’m borderline… As I said to them, they worked out ways of doing things that made them feel more capable than they actually were.. that stage is hard to assess I think x
Yes when I was doing one for my dad he kept saying 'I'm not that bad' and 'I can manage'. I said that's admirable but not the point, your family and neighbours have to do things for you and you're not safe out walking on your own, you can't get in a bath anymore, even having a shower is dangerous, and you frequently have dizzy spells, you sometimes have to use the emergency call system to get help. The main thing they mentioned when they awarded it to him was the problems getting to the bathroom and frequent waking in the night needing the loo, and this counted for most of the points awarded. I had to do mine for PIP and it was a depressing experience because you have to go on about how difficult life is, when actually I'm a very optimistic and stoic person. I got help from the RNIB and a friend who volunteers for Citizens Advice
It is a depressing and frankly degrading process. I hope the new government looks into the whole system. Somebody who doesn't know you assessinig how disabled they think you are. It should be done by doctors but instead is done by supposedly trained and often non-medical assessors working for private companies. The whole system is not fit for purpose. But it's all we have for the moment so it's worth somebody else pointing things out that you may have overlooked and not thoguth about because you 'just get on with it'
I had the same experience with my husband when trying to get attendance allowance. He insisted he could do things - like getting his medication. He could - but it took all morning! In the end the assessor told ME I should be encouraging him to drive to retain his independance - he couldn't get to the car on his own because he couldn't open the door to the garage, couldn't get into it until it was taken OUT of the garage to be able to open the door full width, struggled to get out and when he did get out couldn't walk anywhere alone. So I asked her if she really thought I was going to risk my life letting him drive me - the GP was horrified when I told her. Getting the blue badge was relatively easy.
Well I think I need to take one for the team and try to make the system work as it should! The more of us who do so, the better.. will report back (no doubt after months of waiting).
Thanks for sharing your positive philosophy. I think Channel 5 should do a documentary on you two just like A year in the life of Harewood House. Can you teach me how to use the NHS booking system, our surgery has gone for PATCHS. I plucked up courage to have a go once but all slots had gone, they said they had reached safe capacity whatever that means, so you still have the 8am scrmble to try and get an appointment. Like you, I used to teach IT at one point but have been totally left behind, numptiness just sort of creeps up on you doesn't it. Still,it won't be long until we all have our own personal virtual AI doctor online and don't have to sit in a waiting room filled with snotty kids wanting a day off school.
Loved your post and totally agree with it all. Numptiness is a marvellous word which I am definitely going to use this week. I too would watch the documentary and am waiting for the book!
Our surgery uses PATCHS and I got the message that their daily allocation had been used up! I decided to try again after midnight, so logged on in the early hours when visiting the bathroom and succeeded! What a carry on, just to send a message to a GP, but arguably better than the 8am scramble.
Wow lucky you! I tried doing it out of hours one evening but got a message saying you could only send messages at certain times, I think it was something like starting at 7am through til 5pm
Morning m,lady,so glad you have your ascension to the throne proper back!Sad that basic necessities become the weary focus of our lives eh?Glad the porta loo in your hallway is now relegated to the great outdoors,probably didn’t match your decor anyway!You seem so chipper,a real stormtrooper,and an inspiration to us all.Please keep up the jokey posts,you make me howl with your comments,help brighten the day.Sending very best wishes to you and Parker,xxx💐💐😜
Goodness ! I wish you would write a book. I really enjoyed your post. You certainly have a wonderful gift with words.My ex husband also ate lard ,smoked and drunk .His cholesterol was lower than mine as I have that condition that makes it high even if I lived on lettuce. PMR also seems unfair we are usually Very Busy people who don't have time to deal with the demands that PMR makes of us. Surely the fact that I lived an extremely healthy lifestyle before PMR struck eight years ago should make some difference. I know it was the stress of an abusive marriage that caused mine.
Anyway I wish you very good luck with your Orthopedic quest. Please let me know when your book comes out! That talent shouldn't be wasted !!!
I have just got my blue badge. I had to fill in a complicated form and send it in with a photo. Chose one not too flattering. I had an interview where they asked me about my health. They had heard of PMR!! Then I had to walk along a long corridor while talking to my assessor. I forgot it was a test and walked normally then thought I'd blown it but my normal mustn't have been as good as I thought. Kidding myself? Who cares, I got the badge. Good Luck x
Just a thoght, you could go to Turkey for your op it'd be cheaper and you could get a bundle deal if you want it, walk out with a bum and tummy tuck and Turkey teeth
I was joking, I woudn't go anywhere near one of those Turkish clinics. I have a friend who is Indian and a doctor, she recommends what she calls 'corporate hospitals' in India. When I was in a right mess a few years ago she said I should go there for scans, they're dirt cheap and they'd do loads of tests and sort me out. I wish I had done
You are absolutely right about Indian medical services.We have been on holiday there 23 times and have seen some very impressive plaster casts etc on stupid tourists bunji jumping and jet skiing whilst under the influence of too much “ falling over juice”.We also saw an elderly man in a sarong with a plastic leg and foot,totally the same colour as his skin,and the toes were so realistic.You could only tell it was false by the rivets in each toe!Lots of people in our “ hotels “ were over there purely for the excellent cheap dental implants.🤣😜🌴🩴
Absolutely,maybe some get it right,but would not take the risk if it were me.Got enough wrong with my poor body without adding to the collection of bits falling off!😜🤯🤕
Thank you m’lady for brightening my day! I hope you can get the iFUSE op soon and that it gives you and Parker a better QOL. I really admire how you remain so good humoured in spite of everything.
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Diet book for PMR - anyone know of it?
Kellgren Centre, Manchester Royal Infirmary - is anyone on here under their care please?
