Tags: aches, arthritis, Barcelona, crafting, felting, Hunstanton, nuno felting, paper fabric lamination, RA, rhematoid arthritis, rheumatoid arthritis (RA)
It all started on Good Friday (aka the first day of passover). I had to work all day and when I got home I had a slight cough – but hey, I often have a slight cough. I thought no more of it and went of to dinner with my mum and visiting bro and SIL (aka Mr and Mrs Mooseface). A very nice dinner it was too. We got home and I felt cold … then I felt REALLY COLD! Eventually, when huddled under two duvets, wearing a dressing gown and thick bed socks and with a hot water bottle cuddled up to me, I thought ‘Hmm, I wonder if I’ve got a temperature?’ I did. it was 101.2 degrees – pretty high. The next day was a big Passover celebration with a bunch of cousins and I missed that completely! NOT HAPPY! ‘Heck!’ I thought, ‘we’re supposed to be off to Barcelona in just over a week – I hope I’m OK for that.’ It turned into a very nasty bug with a sore throat, cold, stomach problems and aches, similar to flu.
To ‘cut stories long and short’ as a South African coach driver I once met used to say (a lot, which is why it’s stuck in my head for over 30 years!) I wasn’t – and neither was hubby, who trumped my temperature by going up to 102.2 two days before we were due to fly – by which time I had also contracted sinusitis.
We didn’t go!
(Mind you – if we’d had travel ‘fun’ like Mr and Mrs Mooseface did on their recent holiday, maybe we were better off staying at home!)
I’d been looking forward to this trip for years – literally years – since I was last there, in fact. A bit of a disappointment then (says Penguin with true British understatement). I was also off work for the whole week before our ‘holiday’ which caused some problems, as you can imagine. I was determined though that as a) I still felt pretty rotten and b) I was darned well going to have a holiday, I wasn’t going back in my ‘holiday week’ so I didn’t … which caused more problems. At least the boss couldn’t tell me off ’cause I’m self-employed.
Toward the middle of what should have been our Barcelona trip, hubby started to feel better, and my antibiotics for the sinuses began to work, so we decided on a couple of days’ holiday on the north Norfolk coast – ’cause neither of us felt up to driving very far. I found a hotel on TripAdvisor in Old Hunstanton which was really lovely and the weather couldn’t have been better – in fact weather-wise we could have been in Barcelona! The hotel was very quiet, had excellent food and a bar open all day, and was less than ten minutes walk from a rather lovely beach – just right for a pair of old convalescents! It did us both the world of good!
Unfortunately it ended all too soon (although Enormous Cat says it went on far too long*) and we had to come back home. I did manage to get some crafting done at the weekend though, before I went back to work – I nuno felted four scarves, so pretty pleased with myself there! (No photos as yet, I’m afraid!)
All this time the RA had been pretty much dormant, quiescent or however you’d like to describe it, which was generous of it given everything else that was going on!
Then back to work – oh boy was that hard after two weeks away – and we are SO busy, and stupid things kept happening, mostly my own fault – or at least the fault of the fact my work-brain was temporarily disconnected! That situation (both the business and the disconnected work-brain) hasn’t really resolved over the last couple of weeks!
I have got very into my nuno felting though and then I discovered ‘paper fabric lamination’ here at Felting and Fibre Studio. A whole new world of nuno felting potential! Unfortunately I also discovered that the RA’s back … it’s probably not even ‘flarette’ stage right now but it’s niggling away and making me tired and somewhat achy, not helped by the fact that the beautiful weather we had briefly has now gone and it’s dark and gloomy out there again!
I have just about (with many small breaks for coffee and a sit down!) managed to make a couple of small samples with paper fabric lamination and nuno felting (see above) – and I reckon that this could easily be incorporated into scarves and other clothing and would wear just fine – even the metallic bits – see the bee in ‘bee and flower’- so that’s quite exiting. (Well it is for me – but I’m a bit odd like that!)
Felting, however, is NOT kind to RA joints! I’ve been working on ways of minimising the problems, like using a sander (noisy!) and a tumble drier (not enough control) so I’m back to just doing it in small spurts and in small pieces! These two together are only a about 10 inches across and 6 down! When I feel better I’ll try it in some silk chiffon and then maybe make a scarf or two incorporating some fabric paper laminated features.
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, autoimmune arthritis
Well, after a food-laden Christmas and New Year, I finally got round to some serious dieting and an exercise plan about three weeks before my (inevitably food-laden) birthday! Having had a fabulous weekend away in Ely and Cambridge, staying in the delightful Poet’s House Hotel and eating their delicious dinner and delicious breakfast (scrambled eggs and smoked salmon on brioche, plus fruit juice, coffee, cereal, bits and bobs … no need for lunch then!), I thought I’d have just a nibble at lunch time. We popped into a coffee shop in Cambridge and I chose what I honestly thought was a small, and fruity, cake type thing so I could say ‘well at least it was fruit’ – only it turned out to be cherry crumble and came with ice cream. Oops.
So anyway, the point is that I decided I’d better get straight back on the wagon. No problem with the diet – right back into the healthy food as soon as I got home, helped by my birthday present from my friend Debbie – a healthy food hamper! The exercise was a bit more of a challenge though. I try to get a walk every lunch time but this week I’ve managed it precisely once. OH DEAR! Today my excuse for not going, apart from being incredibly busy at work and it being grey and gloomy and COLD outside, was that I was going to do my 20 minute embarrassing exercise video thing this evening.
Well of course I got home and didn’t want to do the exercises – so I thought ‘JUST GET ON WITH IT! If you stop, you’re done for!’ So I just got on with it. (Bet you weren’t expecting that, were you?!) I actually got through my 20 minutes (20 minutes and 40 seconds if you’re counting… I was) and was very pleased with myself that I’d done it, although not at a good, high energy level, BUT … my feet felt like lumps of lead (semi-molten) and my knees felt like lumps of wood and the rest of me felt … well, I’ve felt better. Rather disappointing since the last exercise I did, on Saturday morning, went absolutely fantastically and I felt great afterwards – if a little sweaty!
Now, four hours later, my feet still feel like semi-molten lead and my knees feel like … well, maybe balsa rather than mahogany but still not knees … and I’m thinking ‘OOPS – I think I might be going into a flare’ … in which case forcing myself to exercise probably wasn’t the cleverest thing to do after all … but hey, who knew?! I was fine early today – it’s just sprung itself on me.
Hopefully it’ll be one of my famous ‘flarette’s’ and I’ll be all right after a good night’s sleep. Anyway, having just re-read my last blog, I feel a whole lot better already. Today certainly isn’t as bad as that day was!
As things have been so good over the last few months I’m not taking any anti-inflammatories at the moment (with the blessings of my consultant), but I can always take some if need be (also with blessings of consultant), so that should sort me out if it doesn’t sort out naturally.
Tags: aches, broke, car insurance, Churchill insurance, cracked rib, New Year, RA, Rheumatoid arthritis, Spanish lesson, stress, work
Happy New Year everyone! OK, as soon as I wrote that title I realised that today actually hasn’t been that bad. I’m not ill (although I made up for that in December with a bad, chesty cold, a cracked rib from coughing, and a stomach upset, as well as RA niggles), the family’s not ill (including cats) and nobody’s died … well, of course people have died, but no one close to me. (Terrible news from France though!)
So what’s made the day from … erm, purgatory? Well it probably started yesterday when I was definitely suffering from methotrexate brain fug! I was just forgetting almost everything, and what I wasn’t forgetting I was getting wrong – unhelpful in the first week back at work! Today began bright and sunny and I was munching my breakfast thinking ‘Today’s bound to be better than yesterday! What a lovely day. La la la la la …’ Silly penguin! Tempting fate that was.
It all started to go down hill when the lovely sunny day led to having to de-ice the car – a good upper-body work-out for sure, but not much fun with a cracked rib. Then I got into work and remembered a big piece of work I’d been putting off since November so thought I’d better tackle it. BAD idea. It went horribly wrong – I ended up having to delete my ‘Normal template’ in Word because I’d got a lot of formatting in there I didn’t want by accident – and then realised I had just deleted a lot of macros and formatting I DID want … so had to put all that back in again. All in all I spent about five hours doing this work and can only bill the client for about 45 minutes of it!
Then I got home and found a letter from the DVLA – or those of you not in the UK, that’s the folks in charge of driving licences and car tax. ‘Ha, reckon this is a scam’ I said to hubby. ‘It says I’ve got no car insurance!’ I then discovered that the letter the car insurance people had sent me in September saying it was renewal time did NOT say, as I thought it had when I glanced at it, that it would automatically renew if I didn’t contact. In fact it said I had to phone to renew and I’d misread it! So I’ve been insurance-less (which is illegal!) for three months. BUMMER! (I’m a VERY law-abiding penguin as a rule and was quite horrified!)
So with about an hour to go before my Spanish lesson and supper only half cooked I rang the insurance people and asked to renew. Had I renewed in September it would have cost me approximately £190. The quote tonight was approximately £290. (If you wondering who NOT to insure with, it’s Churchill). ‘Come on,’ I said, ‘You can do better than that, surely!’ knowing they can ALWAYS drop the price if you twist their arm … but he couldn’t. Very pleasant chap but ‘I can only tell you what’s coming up on my screen.’ Paid the £290 and said, ‘I do have 14 days cancellation, don’t I? I’m just letting you know, I WILL be cancelling!’ He said he quite understood and that’s how we left it.
So I managed to finish supper as my poor Spanish teacher was also having a bad day and she texted me to say she was running late, which worked for me! We had a long talk in ‘Spanglish’ about insurance companies and how rubbish they are!
Then I went on line to check what deals I could get. Instead of £290, I can get a similar deal with someone else for around £150 – outrageous! And what’s worse, I could get a deal with Churchill for £170! I phoned and told them that and got ‘Sorry, my hands are tied. I can only apologise. There’s nothing we can do as you’ve already had the new policy discounts when you took out the new policy.’ I said they had to be joking – how could the claim there were any discounts on that – and he said sorry again …
Then I checked my poor, ailing post-Christmas bank account and discovered that I couldn’t afford to pay out for another insurance at the moment and THEN cancel the Churchill one and wait for a refund – so I’ve got to wait for some money to transfer from my slightly less ailing work account into my personal account before I make the swap. I will do it in the next couple of days when the money’s cleared. So cross that I didn’t just take the time to go on line in stead of thinking, ‘Just get it done quickly with the one you’ve been with before.’ That’ll larn me!
So all in all I ache, my work day was pants and I’m broke … but like I said at the beginning of the post it could be much worse. Flippers crossed though that from now on it’s going to get much better!
Un próspero año nuevo a todos mis amigos en línea!
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, Eye, joint pain, knee, R.A., rhematoid arthritis, rheumatoid arthritis (RA)
Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!
Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!
Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!
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: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’
Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’
Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!
The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!
Tags: aches, arthritis, canadian smocking, cats, cholesterol, coffee, crochet, decafinated, doctor, embroidery, GP, methotrexate, pains, Rheumatoid arthritis, Spanish
Well, I’ve been very remiss posting lately, I must say … so prepare for a very long and rambling post – perhaps I’ll put headings on so you can skip to the bits that you might find interesting! A combination of being very busy and yo-yo health – but fortunately, mostly busyness.
Anyone remember the game ‘fortunately, unfortunately’ where you’d take it turns to make sentences beginning with either fortunately or unfortunately, to make up a story? Well I was wondering whether to write an entire blog post like that, as my life seems to fit that pattern quite well right now – but thought it might get tedious, for you and me! Here’s an example though in case you have no idea what I mean:
Fortunately I have been doing a lot of fun things lately.
Unfortunately doing a lot of fun things is rather exhausting.
Fortunately I am, on the whole, sleeping quite well.
Unfortunately my Spanish teacher forgot I only drink decaf coffee and made me two fully ‘cafinated’ coffees last week, and I had a terrible night’s sleep (or lack of it) trying to climb down off the ceiling.
So – here we go with the update on the health front: About three weeks after my methotrexate increase in May I started to feel much better – go methotrexate! All those ‘regular’ niggly aches in my hands and feet were spirited away – I was still getting twinges and some knee pain (my knees probably being the worst affected bits of me) but no stiffness and none of that constant, nagging, draining pain. Hurrah! Unfortunately … sorry, just slipped into it there … it’s now about twelve weeks later and I’m feeling really pretty rotten. If you’re reading this then the chances are that I don’t need to describe that rotten feeling – you either know it only too well or you probably know me and I’ve moaned at you enough already – so suffice it to say I’m just not feeling good!
I’m hoping, and thinking it most likely, that it’s a temporary blip rather than that the methotrexate is ALREADY not doing the job.
On top of that I had my annual cholesterol test recently … hmm … suffice it to say I am now SERIOUSLY on a diet! :-( It’s very boring – actually that’s not really true – there’s a lot of GREAT and tasty food out there that’s fine for dieting, including much delicious fruit – but remember being a kid and having plenty of toys and games and friends, but you’re BORED and you DON’T WANT ANY OF THOSE? Well that’s how I feel right now about peipono melon and strawberries and lovely home-grown courgettes (zucchini) and all the other apparently delicious things in the fridge! I want caaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaake! But fortunately (sorry!) the weight is coming off so that’s encouraging me to avoid the cake and stick to the melon! Also I do NOT want to be on Statins at 46!!
And so to cats – it’s been absolutely ages since I mentioned my cats (or indeed my poor hubby, but he might have to wait for another post!) They are still, of course, a central part of my life (as are you hubby-dear, before you read this and complain) and in fact we may have to rename Enormous Cat as Mr. Handsome, as he has dieted (or perhaps I should say we have dieted him?) way more successfully than his penguin, so far. I should get encouragement from him – he’s ten years younger in sprightliness and joi de vivre, although (like me) he does complain loudly that he’s hungry sometimes! And Tiny Cat 2 has really come on – she’s gone from being a practically feral scardeycat to a real member of the family – she’s even been known to sit on my lap for twenty minute at a time and stay quite happily curled up next to hubby when he’s sat down beside her. (Not often – but increasingly.)
Having fun (and occasionally working)
So … the rest of life: I had a lovely visit a few weeks ago to Bro and SIL’s new(ish) house in the Midlands – and we’ve visited some other friends and had some friends visit us; Hubby and I have been doing quite a bit of wildlife surveying which is fun; I’ve been doing a lot of crochet, trying to get something ready for a competition but I fear it’s NOT going to be close to ready – but on the bright side I did get third prize in our local show for my crocheted St. Edwards Crown last month, so that was nice. I have also been trying out ‘Canadian smocking’ which is fun. Just small samples so far, practising on an old gingham curtain, because that way I don’t have to mark out squares on the fabric! I have a cunning plan for a clutch bag based on this technique – but no hurry … and the Spanish is coming on nicely – although to be honest I can understand my Spanish teacher fairly well but plonk me down in Barcelona and ask me to translate and I’m sure I still couldn’t understand a word! Still – getting better! And in amongst all this fun, fun, fun – work has, thank goodness, picked up lately, so we’re busy there too. No wonder I’m tired!
Phew – sorry that was so rambly – I’m off for a lie down now … although Mr Handsome is trying to persuade me to feed him instead.