Tags: accident, arthritis, being a burden, burden, crutches, flare, gratitude, horse, joint pain, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I was chatting in the kitchen at work today with a lass who works in the same building. She had an accident at the weekend and is hobbling around on crutches. As an active, sporty person she’s feeling very frustrated – who wouldn’t be – but I was slightly amused (in a sympathetic way of course) at her frustration with losing her independence. I offered to carry her coffee down the corridor for her and she said no, she’d manage. ‘I hate being a burden’ she said, ‘I’m normally such an independent person and everyone’s being so kind and helpful and I’m having to rely on lifts and things for everything, and of course I’m grateful but I HATE IT!’ I do so know the feeling – although I’m incredibly lucky with my RA that it comes and goes so must of the time I can remain independent, but when I can’t that continuous feeling of pressure (entirely internal, not from the people around me) to show gratitude, and that feeling of being a burden is just horrible! I don’t think I can explain that feeling to anyone who hasn’t experienced it – but I know many of you reading this will have experienced it too!
Then she said, ‘And everyone’s got an opinion! “Oh, you’ll have to stop doing that now this has happened” and “If you’d been wearing stronger body protection …” and “You shouldn’t have gone out on a day like that” and “If only you’d thought to do this first …”‘ In fact it was one of those unavoidable things – an ‘act of god’ if you like – something spooked her horse and she came off it. It happens. She wears body protection, she was in a lesson and it wasn’t that bad a day or the teacher (and she herself) would have cancelled. But yes, everybody has an opinion!
‘Oh, eat a spoonful of honey a day and your arthritis will disappear’ – ‘Oh, if you lost weight you’d have no arthritis problems’ – ‘Oh, my mother took a whisky every night and lived till she was 122 without any arthritis symptoms, maybe you should try that’ … Doesn’t that sound familiar? The being a burden thing and the everyone has an opinion thing are two things that I think bloggers on RA and chronic disease blog out rather frequently, but it turns out it’s not just ‘us’.
But at least horse lady will get a full recovery (or I certainly hope so) and no doubt ‘look back on this and laugh’ whereas we folk with chronic disease are a bit more stuck with it! Nevertheless, in true Pollyanna fashion, I’m still grateful (and without that burdensome feeling!) for the fact that my disease is mild and for all the things I can still do … and now I can add to that the fact that I’m very unlikely to be thrown off a spooked horse anytime soon, since I’m very unlikely to be on one!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, joint pain, methotrexate, MTX, NHS, pain, R.A., RA, rhematoid arthritis, rheumatoid, rheumatoid arthritis (RA), rheumatology, work
I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!
Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …
That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!
Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!
Tags: aches, arthritis, GP, hospital, joint pain, knee, NHS, nurse, nurse practitioner, physical therapy, physio, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.
It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!
And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!
I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!
And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.
If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:
- A blood sucker (aka phlebotomist)
- The lab doing the work on the cholesterol
- The hospital secretary
- The surgery secretary who sent out the letter
- The GP who had to call me back and discuss what we’d discussed three weeks before
‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.
Tags: aches, anti-inflammatories, arcoxia, arthritis, doctor, flare, medicine, methotrexate, MTX, R.A., RA, reducing tablets, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tablets, weather
You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!
I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.
I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.
Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!
Tags: aches, autoimmune arthritis, blog carnival, joint pain, knee, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, WAAD, WAAD blog carnival, work, World Autoimmune Arthritis Day
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!
4:00 am A day in March 2008
Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.
Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?
And where the heck is that physio appointment they promised me months ago?
4:00 am A day in March 2014
7:00 am March 2008
Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.
7:00 am March 2014
Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.
7:30 am March 2008
Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!
7:30 am March 2014
Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!
8:00 am March 2008
The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!
8:00 am March 2014
Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.
9:00 am March 2008
Work – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.
9:00 am March 2014
Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.
12:00 pm March 2008
Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!
Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.
12:00 pm March 2014
Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.
Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!
3:00 pm March 2008
Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.
3:00 pm March 2014
Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!
5:00 pm March 2008
‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!
5:00 pm March 2014
I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!
6:00 pm March 2008
Still at work.
6:00 pm March 2014
Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.
7:30 pm March 2008
Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).
7:30 pm March 2014
We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.
Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.
9:00 pm March 2008
Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.
9:00 pm March 2014
In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.
10:00 pm March 2008
Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!
10:00 pm March 2014
11:00 pm March 2008
Better put the light out. Toss, turn, toss, turn.
11:00 pm March 2014
1:00 am March 2008
At last … zzzzzzzzzzzz…..
1:00 am March 2014
2:00 am March 2014
Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.
2:00 am March 2014
Wake up – roll over – zzzzzzzzzzz…………….
And so another day starts in the life of Pollyanna Penguin …
Tags: arthritis, diagnosis, doctor, fatigue, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.
As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.
Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!
Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)
The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.
The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated! 🙂
Tags: arthritis, doctor, folic acid, GP, joint pain, medicine, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology
I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.
Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.
Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.
I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:
Polly: I’ve collected by repeat scrip but it doesn’t include my folic acid.
Receptionist: Ah … let me look it up. Oh I see, that’s because you’re not due any until March.
Polly: Yes I am, I’ve run out.
Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.
Receptionist: So that’s three times a week
Receptionist: And they issue you twelve, so …
Polly: Yeeeeeeees …
Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?
Receptionst: Oh … in that case it looks like the doctor’s made a mistake.
Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.
So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.
Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?
So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!
Tags: appointment, blood test, disaster, NHS, Rheumatoid arthritis, rheumatology, rheumy nurse, walk-in
Here’s the thing. You may remember that I said back in November that the hospital were happy for us to have 3-monthly blood-tests for methotrexate? Well it turns out that I’d misunderstood. It appears that the hospital are happy for us to have monthly blood tests but only see the surgery rheumy nurse three-monthly. They are NOT happy to have methotrexate patients checked only three-monthly.
Well that would mean attending the walk-in blood-test appointments, and if you reading my most recent post on this you’ll know they’re a joke – or they would be a joke if they weren’t a tragedy. Today I attended my three-monthly test and had a wee chat to my lovely rheumy nurse about the monthly tests.
They seem to have put the blood tests on a Wednesday now, although my last notification was for a Thursday – perhaps it’s both now. If so, it’s not helping. The nurse freely admitted that the system was a disaster and I witnessed the rugby scrum as the board with the little numbers stuck to it was brought out by the receptionist.
Walking-sticks flying, old people beat others out of the way as they charged toward the board, knocking down the poor receptionist who was trying to attach it the wall. An ambulance had to be called to cart off the trampled people when the scrum was over.
OK, I exaggerated just a tad there, but not as much as you’d think!
In spite of the fact that there’s a notice up saying ‘Unless you have a really important personal reason or work, please don’t come in before 9:30 for the blood test’ I don’t think one person in the scrum was under 80. Now the thing is, from experience they all know that there’s going to be a 1.5-2 hour wait, and they have lives too – why on earth should they wait 2 hours just because they don’t have work – so I don’t blame anyone, of any age for coming in at 8:15 plus rather than 9:30 – but the whole thing is just a failure … and surprise surprise, staff are going off sick with stress – so would I be, I think, under the circumstances!
The only light at the end of the tunnel maybe, maybe, maybe, the hospital will see that people are not ‘complying’ with their monthly tests and then tell the surgery they have to reinstate tests with the rheumy nurse each month – I don’t suppose that will happen though. They’ll probably just tell the patients off instead.
It’s not the lack of rheumy nurse I object to – it’s the lack of an appointment time , and a sensible one at that, that doesn’t assume each patient can be dealt with in 2.5 seconds or whatever their crazy trial showed!
Tags: arthritis, doctor, GP, methotrexate, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff, although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.
Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!
And then it went again.
I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.
OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!
OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.
Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!
Tags: arthritis, clinical commissioning, GP, NHS, nurse, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Last time I had my monthly (now three-monthly) rheumy nurse appointment at the surgery, they happened to be running the first walk-in blood test clinic. These will run every Thursday – no appointment necessary, just turn up any time on Thursday, take a ticket, sit down, wait to be called and have your blood taken. No actual nurse appointment – in and out, ram in the needle, suck the blood, off you go. Well … that’s the theory.
My rheumy nurse had blithely assured me that they had run trials on this and each person could be seen and sent on their merry way in 1.5 minutes. I’m sure you won’t be surprised to hear that this wasn’t quite the way things were going on the day I happened to be there. As I say, I wasn’t there for one of these walk-in tests – I just had the dubious pleasure of observing while waiting for my appointment. I am supposed to go along in a couple of weeks time for one.
Well I arrived around 8:30 for my appointment and saw a big board on the wall with raffle-ticket type numbers on it. They had obviously run from 1 to 50 but 40 of the tickets were already gone and the waiting room was alarmingly full. As I sat down a weary looking phlebotomist poked her head round the door and yelled ‘Seven … seven? Is number seven here?’ Number seven was not there – I think number seven had got fed up with waiting and gone home!
‘Eight … number eight?’ A grumpy woman got up and pointed out she’d been there since 7:30 that morning and had now waited an hour for one of these quick appointments.
When I went in for my appointment (dead on time, bless her!) my dear nurse looked a tad frazzled. ‘What IS going on out there?’ I asked, and she explained that this was the first run of this new system, they were two nurses down and the practice manager was on holiday! She was trying to fit in the odd ‘walk in’ patient on top of her full rheumy list, to help out.
Well – that couldn’t be helped, could it? I mean if people call in sick, you’re stuck, aren’t you? No one to blame. And of course the NHS can’t afford to employ locum/bank nurses to fill in – just one of those things, I thought.
Then I thought again. I know this place, I thought … ‘Erm … dear rheumy nurse,’ says I, ‘how long have these ladies been off sick?’
‘Oh, don’t!’ says the dear nurse, ‘Joan’s been off so long I can’t even remember and Julie’s recovering from an operation so she’ll be off a while.’
Right … so whose bright idea was it to start off this system KNOWING they were two staff down and couldn’t possibly cope? I don’t know but I can guess … someone who was on holiday, perhaps?
By the way, when I came out from my 15 minute appointment there was a nurse shouting ‘Ten … number 10 …’
So ‘we can turn these people round in 1.5 minutes’ had apparently turned into ‘We can turn these people around in … um … probably about 15 minutes’ given that there were two nurses doing this walk-in full-time and others stepping in when they could.
Number 43 was off the board by then – I wonder how long until they ran out of tickets – I overheard a receptionist saying, ‘Oh, I think they’ve all gone – you’ll have to come back next week’ to someone, before realising there were some tickets left, so presumably there are only 50 slots and ‘Turn up any time on Thursday will actually mean ‘Turn up before 9 on Thursday or you’ll be out of luck.’
Of course the new Clinical Commissioning system that is now in place but not in place and has no one actually running it is no doubt partly to blame … but that’s a whole nuther story …