Tags: Cambridge, Colour exhibition, Ely, Poet's House, RA, the Bookworm
Well, on a discussion on Carla’s blog, Irma said ‘Wouldn’t describing a normal life, despite RA, be far more conducive toward offering hope to others newly diagnosed?’ and I thought heck, yes … at least up to a point, and didn’t I used to do that more, and not just moan about a) pain b) the **** GP surgery c) the b**** hospital d) the **** NHS? Yes, I did! Perhaps I should do that again!
So here goes- I’m not going to mention the pretty miserable last couple of weeks where I’ve been suffering quite a bit of pain and fatigue, and I’m not going to mention that the GP lost my prescription AGAIN and I had to push to get a sharps bin in time to actually put my methotrexate injector into it … (although perhaps I’ll post about those later!) Here I’m going to tell you about our fabulous 10th anniversary weekend instead.
Hubby and I had a weekend away in Ely, not too far from home. I had the Friday off and we drove down late morning, very leisurely and had a really lovely drive – we were lucky with the weather and the we took the back roads so no traffic issues apart from the odd tractor. We reached the really lovely Poet’s House Hotel (which I posted about when we stayed there last year too) rather early for check-in, but luckily the room was ready anyway, and what a lovely room it was. Alas, no photos, but the rooms are beautifully decorated, spacious an comfortable … really comfortable. I slept like a log when I was there! We had mostly good weather and Ely is a beautiful city. ‘City’ makes it sound big, but it’s absolutely tiny. It’s a cathedral city, not an economic/size-related city. We had a delicious and beautifully served anniversary celebration meal on the Friday night – with none of the Fawlty Towers elements that plagued our Sussex stay recently! We shared a bottle of wine – which may have something to do with the sound sleep that night!
We visited Cambridge on the Saturday and the walk down to the station was through the cathedral grounds two lovely parks – about twenty minutes walk, but very pleasant indeed – and my RA wasn’t bothering me much at all so the walk was a pleasure.
In Cambridge, apart from a general potter about, we went to a really superb exhibition at the Fitzwilliam museum, called Colour: The Art and Science of Illuminated Manuscripts. It really was a cracker of an exhibition – unlike most museum exhibitions in my experience, it told me pretty much everything i wanted to know and much, much more! It was easy to pick out the info I wanted (mostly about science and technique) and ignore the bits I was less interested in (mostly the details of which biblical tale was being illustrated etc.) and the way it was organised meant that even though it was quite busy, everyone could easily get to see everything. As the icing on the cake, we went to a fascinating talk by Patricia Lovett, who is not only an expert on calligraphy and the creation of such manuscripts but also a tremendously witty and personable woman who kept us all entertained for over 1.5 hours. She must have been tired after it but it didn’t show! I was flagging slightly by then, although I didn’t notice during the talk, because it was so good, so we went to the cafe and got a drink to perk us up, and then walked back to the station (more walking, RA still not a problem!) and then back up to the hotel (more walking, still fine!) We then headed all the way back down the hill (I forgot to mention Ely is on a hill) to get fish and chips, in memory of what we actually did on our wedding night ten years ago! We ate them in one of the parks and then headed back to the hotel, back up the HILL. Yes, I was tired and achy by this time, but that was OK because we were done for the day!
The following day we thought we’d go for a walk as I was quite stiff and wanted a chance to loosen up before going home … but we didn’t get very far. Just down the road we found a book shop which, to our surprise, was actually open. (This was Sunday morning.) It was a new bookshop, not second hand – you don’t see many of those about anymore! The staff were very cheerful and chatty and offered us ‘anniversary coffee’ when they found out why we were there – and lovely coffee it was too. That was the only disappointment in Poet’s House – great food, not so great coffee! Of course that meant we spent all our time there, not walking – but that was fine. I came away with two books I bought myself and one hubby bought me as an anniversary present.
Couldn’t have gone better really – apart from a bit of a breakfast hiccup where Fawlty Towers caught up with us again… but I won’t go into that! It was a gem of a short break and lots memories I’ll treasure. In fact, to help us remember to treasure the memories, hubby’s anniversary present from me will the picture that was hanging on the wall in our bedroom at the hotel. It’s the Bookworm by Carl Spitzweg. It’s a satirical picture poking fun at the poor bookworm, but in spite of that hubby and I both would actually quite like to BE the bookworm, so we’re happy to have it in our living room cum library!
Tags: biologics, depression, joints, pain meds, RA, RA blog week, Rheumatoid arthritis
My picks are top heavy towards the top of the list of contributors, not because they’re (as far as I know) any better than the bottom of the list or the middle, but because I started being methodical and going to each blog in turn, and then I got short of time and had to skip to a few others at random – so if I’ve missed you out it’s nothing personal!
I seem to have found the biologics posts especially interesting and inspiring, maybe because it’s something I know so little about. I really enjoyed the wide variety of takes on this fascinating topic.
Starting stories: A depressingly typical but nicely written starting story can be found at Jax.
Biologics: A great, and well balanced, tale of biologics from someone who has had a LOT of experience at As My Joints Turn. And a less positive one, sadly, so far, for Trish. But to balance that, Brenda has had a great experience. And a wonderful post in defence of biologics from Lene at the Seated View, and a fascinating alternative take (as always) from Cateepoo.
Wildcards: There’s a terrific post about RA and depression over at Single Rheum including some great advice.
Active versus passive patient: A nice take on this from J G Chayko and the old lady in her bones.
It’s been a fascinating week and I’ve come across a whole heap of blogs I didn’t know were out there.
Thanks to Rick Philips of RADiabetes for setting it all up and introducing me to them, and for some great posts of his own. I wish I had had time to participate more fully and post and read more but it’s been one of those weeks! Maybe next year …
Um … I have no horror stories to share because of the new laws; we can still get opiates when we need them in the UK … for the moment, and I’m lucky in that most of the time, in between flares, paracetamol (Tylenol) does the job for me pretty well. During flares I intersperse that with ibuprofen and that’s as good as it gets – still painful, but that combined with hot water bottles, cold compresses etc. and my Physicool bandage, usually keeps me going until the steroids kick in. Of course, getting steroids is a whole nuther story...
My sincere commiserations to my US buddies, and indeed everyone suffering under the new laws there on pain meds!
So, since I can’t use the other wildcard and write about depression as I don’t suffer from that either, that’s me blogged for the day! I shall look forward to spending my blogging time reading some other blogs, so that I have something to say tomorrow on the topic of Great Blogs I have Read this Week! It’ll mostly be great blogs I’ve read on Thursday because work’s just a tad hectic right now, with one employee on maternity leave and one about to take holiday (and I only have two!) Now if I could just teach Tiny Cat 2 to type …
Tags: aches, advice, arthritis, fatigue, flare, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.
What advice can I offer people who’ve just been diagnosed? Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!
- DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide.
- Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
- DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
- Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
- Use what aids you need – and find out what aids are out there that can help you.
- Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
- Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
- Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
- Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
- Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!
Tags: active, arthritis, consultant, diagnosis, doctor, GP, hospital, NHS, nurse, pain, patient, R.A., RA, reactive, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?
I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.
Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)
Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’
Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.
I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.
Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!
Tags: R.A., RA, RA blog week, RAdiabetes.com, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Those of you who know me, either in person or through the blog (or in Carla’s case both), will know that the chance of me blogging once a day for a whole week is … erm, let’s be honest … pretty much nil, and I’m in total awe of those of you who manage to do it for a month, which I seem to remember included Wren and possibly Catepoo at some point also. However, the Second Annual RA Blog Week is coming up – 26th September to 2nd October, and I’m gonna try … I really am. It’s organised by Rick Phillips wtih input from Wren (who seems to be all over the RA blog sphere at the moment – go girl) and a bunch of others.
It has this handsome badge, which I will try to remember to put in my widgets on the blog when it’s blog week time (if I can remember how) …
oh dear, that’s two things to remember.
Fortunately if you sign up for RA Blog Week here then Rick will send you reminders – or at least I think so. Maybe you have to sign up somewhere else for reminders.
I’m allowed to be brainless at the moment if you don’t mind! I’ve had a heck of a couple of months at work and I’ve just ‘broken up’ for the holidays – at least a week’s holiday, which by the time this is published I will be on …or back from, depending on when I publish this. Consequently the brain is in free-fall at the moment.
There’s been a vote on what to blog on for each day, with a couple of wildcard topics thrown in if one really doesn’t suit you, and you can find out what each day’s blog will be about here. I love stuff like this because one of two things happens: 1) We all take the same topic and come up with completely different takes on it, and then say , ‘Wow, whoda thought it – so many ways to look at the same topic!’ or 2) We all say pretty much the same thing and then go, ‘Wow, whoda thought it? Everyone’s feeling the same as me, and I thought it was just me. I don’t feel so isolated anymore.’ Either way’s a winner – so now we just have to look forward to the 26th.
And Rick, keep sending those reminders please … you can tell from this post that my brain is suffering from Swiss cheese syndrome, so I need all the help I can get. Thanks!
Tags: app, arthritis, chronic pain, cloudy with a chance of pain, graphs, pain and rain, pain and weather, pressure, study, umotif, weather, weather and pain
Preliminary data can be a dangerous thing, but the gloriously named ‘Cloudy with a Chance of Pain’ study, which I blogged about here when I first signed up for it, has produced some very interesting preliminary results. They have participants across the country and indeed internationally, but for the initial results they were focusing on two big cities (Leeds and London) and one rather smaller one, Norwich, quite close to me. They looked at chronic pain in general (not just arthritis) and found a link between wet weather and an increase in pain – something many of us have been muttering about for years (indeed people have been muttering about it for centuries), but which has never been seriously studied before so far as I know.
The Cloudy study works by getting patients to fill in an app each day which measures wellness, pain levels, stiffness levels, time spent outside, fatigue, tiredness on waking, air pressure (based on your phone letting them know where you are so they can find out the pressure from that) and possibly some other things I forget.
I’ve had some frustrations with the study, most notably that they lost five weeks of my data, which I’m still fuming about, although they did send a nice apology, which stopped me ranting at them any more. (Yes, I had the odd rant or two … sorry guys!) As time has gone on though, the app has improved a lot. It now allows you to graph any two measurements from the list above against each other to see if there are any obvious correlations. It’s then also possible to go onto the website and look at massed data for all participants, which you can then attempt to analyse and send in your own suggestions as to what the heck’s going on. I’ve not tried that – I’ve been too busy making a living – but it does sound like fun.
Interestingly, and if you’re in the UK and reading the blog I’d be mighty surprised if you haven’t heard about this already as it’s made a huge splash (pun intended) in the media, their preliminary data does suggest a link between chronic pain and wet weather. You can read more about it here on the Cloudy blog. Now it is preliminary, but it certainly does look promising. Another six months to go until the end of the study, and then we’ll see what they find out.
So do my graphs correlate – pressure and pain? Erm … nope, not really. Funny thing is they were correlating beautifully right up until the point they lost my data (thanks guys) but after the five-week hiatus pressure and pain haven’t correlated especially well. I wonder if that’s because I’ve generally not had much pain for the last couple (until yesterday, which is partly what reminded me to write something in my blog!) I think maybe if I’m already suffering, then things get worse when it’s wet. If I’m going through an ‘under control’ period, then it doesn’t matter how wet it is, I’m fine. That’s just speculation though – I’ve not tracked it properly. Maybe in another six months I’ll have a better idea.
So keep it up, Cloudy team – you’re doing a great job … even if you (or rather umotif, whose app it is) did lose my data. (Me, hold a grudge … never …)
Tags: aches, ankle, arthritis, flare, gardening, head, healthline, joint pain, knee, migraine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, tiredness, work
First of all thank you to Healthline for selecting my blog as one of the best arthritis blogs of 2016, and congrats to my online (and in Carla‘s case actually met in person) friends who also achieved one. Good to see so many old friends listed, as well as Carla, Wren, Cathy, Andrew, Amanda, Kelly and ‘Warm Socks’ also feature, and there are other blogs on there that I’m not familiar with and should take the time to get to know!
Now on to the body parts! My last post, a couple of weeks ago, stated that my knee was messing around again. Well I suspect there’s a little bit more permanent damage done each time I have a flare, and that knee has a lot of flares, but now it’s not not bad at all. Most of the time I’m having no problem – so long as I don’t walk into the printer table and bruise the precise spot that I flare in, as I did last week!
Then last weekend my ankle suddenly went ‘weird’. I can’t think of a better way to describe it. It hurt in the night and when i got up in the morning it was really painful. There was a big swelling but not really over the ankle, rather at the front of the leg above the foot, but absolutely no heat. I used my Physicool ice bandage anyway and that helped. It stayed painful and difficult to walk on for two or three days and then it was magically better. I really don’t know what that was about or if it was RA or not – I just hope it doesn’t come back.
As to the brain, such as it is, it has been subjected to a lot of migraines lately, and although I have tablets that, if I take them in time, get rid of the head pain, I’m still left feeling unwell. Work is insanely busy at the moment, which is contributing to stress which in turn is probably contributing to migraines – a bit of a vicious circle as if I have to take time off for migraines then work gets even more hectic!
However, yesterday, for the first time in a couple of weeks, I actually felt well, normal and full of energy – hence finally getting round to post! I’m not QUITE so full of energy today but not bad. I think getting outside in the sunshine made a big difference! We went for a nice long walk along the seafront at Cromer on Friday evening and then yesterday morning I did some gardening and washed my car with hubby (for which read watched and occasionally waved a shammy over the car while hubby did the hard work) – thank you dear!
I’m just hoping this energy boost will last me through the next hectic week – because next Saturday I’m going to need to work or I’ll never fit everything in!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, knee, NHS, pain, physio, physiotherapy, prednisolone, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, steroids, stiffness
Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.
I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.
Now I’m still ALL for the steroids – the side effects, now I realise that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.
This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.
Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.
So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!
Tags: arthritis, flare, helpline, joint pain, nurse, prednisolone, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids
Hurrah – I finished my week’s worth of prednisolone last night and I’m glad to say the knee is better! Oh … and the helpline phoned me back … on Monday … so five days after I phoned them. Yeah, like I said, they really are NOT for emergencies! I didn’t actually get to speak to her as she phoned on the home number even though I’d requested they try me at work. ‘If you didn’t manage to speak to the doctor or need some advice, do call us back.’ I did see the doctor and didn’t need advice, so I haven’t called back.
I’m still getting a bit of pain in that knee on and off, but then I usually do; I’ve got full ‘bendability’ in it and most of the time it’s not hurting, so I’m quite content … although I do feel as though I’ve just run a marathon, having been cheering on Andy Murray as I watched him (on the telly) fighting his way to the semifinals at Wimbledon!