Tags: positive thinking, R.A., RA, reframing, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, tiredness, weather, work
I’m feeling a lot better at the moment. Exercise obviously is the cure for or ills! (Well perhaps not, but I think it might have helped a bit! Perhaps it’s browsing books that made me feel better!) Anyway, in spite of feeling better physically I woke up yesterday with a major ‘Monday morning feeling’ and a distinct grump on about the fact that we’d had too really gloomy days over the weekend and yet last Friday and this Monday (when I had to work, of course, or in Friday’s case would have been working if I hadn’t been at home with my head under a pillow trying to shift the latest migraine), we had gloriously sunny, spring days.
Then I decided this was not the positive thinking penguin I wanted to be! So I ‘reframed’ and started to think, ‘Hey, at least I can glance out of the window and see blue sky and the promise of spring, even if I do have to work.’ Then at lunchtime I managed to reframe, ‘Oh heck, we’ve gone a bit quiet at work, will we have enough to keep us going?’ to ‘Ooh, goodie, we’re a bit quiet. I’ve got time to go for a nice walk at lunch time and enjoy the sunshine.’ And I did. I only went up and down the high street, popped into a few charity shops and had a browse (got seriously tempted by a knitting machine, but that’s another story) but mostly just wandered up and down soaking up the sun (in a well wrapped kind of way, given that it’s still February!) but I felt so much better for it, and so much better for seeing the aconites starting to flower, bright yellow splashes of colour that are definitely the heralds of spring round here! (It was the primroses where I used to live, in Devon, but here it’s the snowdrops and the aconites.) Anyway, I’m feeling much better for it – and hoping that today will bring a bit more sunshine and another chance for a walk … although my fears about lack of work were groundless, as a load more has come in! Even so, I shall jolly well make time for a walk at lunch time!
Tags: arthritis, migraine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder pain, stiffness, stress, tiredness, work
Hmm, not feeling quite so fine any more! I had to finish work early yesterday because I woke up with a headache and it just got worse and worse until I finally realised it was a migraine. My migraines usually start with handy visual effects that flag up, ‘Hello! I’m a migraine’ straight away, but of course I was probably asleep at the point where those were happening, so I missed that.) Although it was one sided, it wasn’t that bad when I woke up so I just took paracetamol. It just niggled away all morning, and eventually I thought ‘migraine?’ and took a migraine tablet. by then I suppose it was waaaaaaaaaay too late.
At about three o’clock it was getting really bad – feeling sick, couldn’t see properly out of my right eye, bad pain … definitely time to give up and go home. Fortunately hubby had the day off and was there to get me tucked up in bed with an ice pack, a darkened room and middle-sized cat (who purred so loudly at the unexpected pleasure of an afternoon snuggle that I was very glad my migraines aren’t affected much by noise – only light!)
I felt slightly better by about six and was able to eat some dinner, which made me feel better still, but still completely washed out. I didn’t do anything all evening except watch a bit of telly once the headache had gone.
Still, at least woke up this morning headache free. Just one small problem … they’re painting at work! Aaaaargh – the smell of paint is bringing the headache right back again! Not sure how long I’m going to last this time.
Interestingly I’ve got pains in my right shoulder for the first time in a while, coinciding with a migraine over my right eye. I’m fairly convinced they’re related … but the doctors aren’t!
If there’s anybody out there that gets migraines that they think are related to their RA Pain, I’d love to hear from you!
Tags: aches, arthritis, exercise, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, work
Is it too late to make another New Year’s Resolution? So far the first and only two aren’t going so well … eat less, exercise more. I’ve managed one exercise ‘session’ and then come down with a very painful period … which is usually an excuse to eat more, exercise less!
Anyway, the new one is to try not to let a day full of minor frustrations build up into one major bad mood!! This morning will be testing. It’s not nine o’clock yet and so far:
- I woke up at 5:50 am with a very painful back (period) and hip (who knows, maybe RA?), to hear the pitterpatter of not so gentle rain on the roof. Oh goody, another wet and painful day!
- I checked my emails to find I’d managed to slightly upset a client. (Long story I’m not going to go into here, but let’s just say I’d anticipated that, and of course it’s his fault, but still not nice to have it confirmed.)
- I went into the kitchen to make my lunch and found that Middle Sized Cat had spilt his water all over the floor. Needless to say, I found out by stepping in it.
- I chopped up a variety of bits and bobs for my salad, and then threw them on to the floor and into Middle Sized Cat’s refilled water bowl!
- I was running a bit late coming into work and then had a minor run-in with an idiot driver who thought that he had the right to pull out round a stationery bus into my side of the road because he drove a BMW and I only drive a Corsa. Wrong! Genevieve (my car) and I don’t like to be bullied, so we carried on. He wasn’t actually drawn up with the bus yet and had heaps of room to pull over on his side, but he sat there for a minute, pulled right out onto my side of the road and glowering because he thought I should have waited for him. HA! Anyway, we won that one at least, but it didn’t make me feel any better – just cross about more things!
So here I am, sitting at my desk, telling myself that none of these things are exactly a major crisis – especially as both hip and back ache have now gone – and that I should pull myself together and plan for a GOOD DAY.
Erm … so far it’s not working. Part of me is going, ‘Come on Penguin, positive thinking and all that … smile and the world smiles with you and all that jazz.’ The other part’s going, ‘Oh shut up you stupid old bat. I’m entitled to the odd bad mood if I want one!’ Have to wait and see which part wins!
Actually, seeing them all written down on the page helps rather to see just how trivial each individual incident is; the trick is just not to let the frustration build up. I feel better already!
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
Tags: aches, arthritis, depression, doctor, fatigue, flare, flare-up, GP, hospital, hypothyroidism, joint pain, methotrexate, MTX, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, T3, T4, thyroid, thyroxine, tiredness, TSH
I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.
Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.
Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.
Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)
One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!
As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.
Tags: aches, arthritis, heels, outfit, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoes, shopping, sleep, stress, tiredness, weather, wedding, work
I think that now is the time to admit defeat … talking of which my feet are admitting defeat too, but I’ll come back to that in a minute!
Ever since I was diagnosed with this dratted thing I’ve been trying to see if my RA followed some sort of pattern – diet, stress, tiredness, weather, hormones … and every time I try to keep some sort of log and think I’m getting somewhere, the pattern just falls apart after a while. I think I give up on trying to find out exactly what it is that makes my RA worse – not because I don’t think the patterns are there, but because I think they’re just too complex. I suspect that tiredness AND weather AND stress AND hormones AND diet probably all play a part – but my analytical abilities (or record-keeping abilities for that matter) just don’t stretch to trying to work it all out … especially when I’m feeling ‘carp’ anyway!
It would be really interesting to keep a log of all the different factors every day and try to analyse it – anyone up for the challenge, ’cause I’m not!
On the bright side, I have an outfit (minus shoes of course!) for the wedding of Mr and Mrs Mooseface (aka my brother and his fiancée). This is why my feet have admitted defeat – not that I’m going to give up on shoes (don’t panic Mr and Mrs M, I’m not coming barefoot although that has been suggested!) Just that my friend Debbie and I had a NINE HOUR shopping trip on Saturday (including the drive to Norwich and back, which Debbie did thank gawd!) and my feet have given up as well since then!
We had a terrific time, and a successful outfit hunt, but as my dress has black in it I thought ‘Aha, I probably have some shoes at home that’ll do the job!’ Well y’all know how much I love shoe shopping (not), so I thought that seemed like a cunning plan. Got home, tried on the outfit, showed Hubby (who liked it, thank gawd!) and tried on the shoes. These are pretty un-fancy black sort of court-shoe/pump things that I’ve had for years, with a harmless-seeming one-inch heel. I thought perhaps a shoe-bow in one of the other colours in my dress, or in silver to match the shrug I got to go with it, would smarten them up.
Well – the shoe trying on session was NOT a success. I have one thing to say about it. OOOOOOOOUUUUUUUUCH!!! Actually the heel on them was really ugly, so perhaps it’s for the best! Anyway, looks like it’s flats for me! (OK, that was more than word … I don’t care! I ache! Stop getting at me! Waaaaah!)
So … will have to have a shoe shopping day some time in the near future! Probably not this weekend as am hoping to fit in another hike with Weeny, hunting butterflies and orchids to photograph … at least the feet will be in walking boots for that so I can probably cope, if the weather improves. It’s continuous rain at the moment.
Tags: arthritis, disease progression, joint pain, joints, Omega-3, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Very interesting article in the New Scientist this week – thanks to Maggie for pointing it out – about Omega-3, the promises, the facts, the bits in between … It’s not only about joints, but all the things that it’s claimed Omega-3 can help with, and what proof there is, or isn’t, to substantiate them. It seems that ‘isn’t’ mostly about covers it – but when it comes to arthritis, “There is evidence that omega-3s’ anti-inflammatory properties remove morning stiffness and reduce the amount of anti-inflammatory drugs needed [...] but it doesn’t stop the progression of arthritis and it does not protect the joint or prevent further deterioration. It only dampens down the pain.” Well, I don’t think anyone’s actually claimed that it does stop the progression of the disease, and hey, anything that reduces morning stiffness and dampens down the pain is a plus in my book! Guess I’ll keep swallowing those horse pills then!
Tags: arthritis, cure, injection, medical journalism, medicine, R.A., RA, remission, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
OK, so I really depressed myself with my last post – what a dumb, trivial thing to get depressed about in the scheme of things,* but that’s the way it is sometimes when you’re an overweight dumpy-frump with curled-up feet and possibly PMT!! So anyway, here’s something potentially more cheerful!
According to The Daily Telegraph this morning, there’s another ‘one-treatment cure for RA’ in the pipeline, and unlike the last one, that needed to be injected into every joint, this really is a one-off treatment that could put patients into remission for years or even a lifetime.
To say it’s early days would be a bit of an understatement, but the good news is that, like most RA drugs, it’s a drug, otelixizumab, that’s already been shown to safe in humans because has already been used ” in much stronger doses to prevent transplant patients rejecting donor organs”. If it works, we’re looking ten years down the line – they’re just about to start the first clinical trial in humans. And if it works the researchers have already said that it might potentially only help people in the early stages; “”However, the chance of this happening in patients who have had the disease for a while is not altogether absent,” says Prof John Isaacs of Newcastle Uni. Oh yes, and at the moment ‘one-off’ is not quite as it sounds – you’re looking at between two and five hours A DAY for FIVE DAYS of intravenous injection. Worse than dialysis. But the point is that unlike dialysis that’s it – you’re cooked. Off you go and hopefully no more RA damage. And also they’re hoping that if they can prove it works, they will be able to produce a different form of the drug that patients can administer themselves (and that presumably will not take ten hours minimum).
This is a nicely balanced article in my opinion – and I rarely say that about medical journalism – it’s not full of the hyperbole that the last one injection cure seemed to bring out and it doesn’t say ‘lots of old people will benefit’ as did the last arthritis article I commented on, although Kate Devlin hasn’t been brave enough to try and say what RA is (probably having seen so many medical journalists shot down when they do that!) The closest she gets is “The condition is different from osteoarthritis, the ‘wear and tear’ form of the disease that typically effects older patients.” Well it doesn’t say much, but you can’t argue with it, really. ;o)
This may not be something that will ever help me (because ten years from now I guess I won’t be considered to be in the early stages of the disease, even if it stays mild), and it probably won’t help you if your’re reading this blog, but anything that really has the potential to ‘cure’ RA (and obviously it won’t undo any joint damage that’s already taken place, but if it stops further damage – great), has got to be good news – and especially good news if you have RA and also have children!
* Not that I’m suggesting your wedding is trivial, Mrs Mooseface!
Tags: aches, arthritis, clothes, comfy shoes, feet, neck pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoes, stress, tiredness, wedding
I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?
I get the feeling (probably erroneous) from my mum that she and other family members have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:
I’m sure you can see why!
Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:
(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)
Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.
Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)
Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!
Bright ideas anyone?
Tags: methotrexate, queasiness, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), sick as a parrot, sickness, weight loss
Well, you learn something every day – I thought I was feeling sick as a parrot this morning, but when I looked it up it turns out I’m not. Sick as a parrot, in case I’m not the only one that didn’t know this, means depressed or disappointed about the outcome of something … I thought it just meant feeling sick … and boy do I feel sick!
I guess I shouldn’t be writing about this now because the more you think about this kind of thing, the worse it makes you feel. I think it’s the m-m-m-m-methotrexate as this is the second week in a row that I’ve taken my m-m-m-m-methotrexate on a M-M-M-M-Monday like the good girl I am, only to start feeling rather queasy Tuesday or Wednesday … right up until Friday morning when I take my f-f-f-f-folic acid … let’s see if the same happens this F-F-F-F-Friday.
I guess I could take something to settle my stomach, but my brother and sister-in-law-to-be (aka Mrs Mooseface on my comment section) are getting married in September (00ps, I meant August), and I’m kind of hoping that this might help me lose some weight in time for the wedding. Oh foolish vanity …