My (Super) Hero

October 29, 2009 at 10:42 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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Picture the scene: it’s three in the morning and I’m in pain and wide awake. Tim Piggot-Smith has failed me – for once even his dulcet tones reading David Starkey’s Monarchy: The Beginnings haven’t lulled me to sleep. Neither has a podcast of a lecture from the wonderful Dr. Stuart Lee on Anglo-Saxon History – my other failsafe. I’m at my wit’s end.

Suddenly there’s a crash, a bound, and a superhero comes flying through the bedroom window and lands on the bed with an enormous thump. Yes, it’s The Grey Shadow, feline super-hero extraordinaire, to the rescue. A lick, a purr and I’m already feeling better.

Soon the gentle sound of purring has done the trick and I’m fast asleep.

I wake up at around 5:30 and The Grey Shadow has mysteriously disappeared. My ankle’s in agony. Why? Ah yes – Enormous Cat is fast asleep on top of it. I wonder where The Grey Shadow went? He would have been far too considerate to sleep on my ankle.

Thanks to Wren at The Rheuma Blog for reminding me about this incident with her post on wee beasties! What would we do without them? I’d far rather put up with the discomfort of the occasional sore ankle than not have these nocturnal visits from my superhero at all!

Enormous Cat

Enormous Cat

This is enormous cat. You can tell it’s not The Grey Shadow, in spite of the general similarity in colour and size. The Grey Shadow wouldn’t be seen dead on a pile of washing!

5-HTP update – hmm, not working so well now

October 20, 2009 at 3:04 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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I don’t know if the 5-HTP (which I’ve been taking for a while to help me sleep, as sleep (or lack of it) seems to be a probable cause for fibromyalgia) becomes less effective after a certain amount of time, but I’ve just recently stopped finding it very effective. My bro takes it sometimes too and he reckons that if he takes it for a while he becomes kind of desensitized to it, so perhaps it’s that.

It was fantastically helpful for a couple of months, but then I started to find that if I woke up, even if it was only an hour or two after falling asleep on taking the tablet, I couldn’t get back to sleep again.

Now the flipping hot flushes have started again, I’m waking up about once an hour and hot flushing BIG TIME. Of course that makes me feel utterly disgusting and I usually have to get up for a bit, after which I’m wide awake for a few minutes. Only a few minutes doesn’t sound so bad, does it … until you realise that this is happening six times a night or so.

Surprise, surprise – the fibro is coming back. Off to see my lovely cake-recommending physio this afternoon so that will help, but I fear I’m going to have to try the meds that the consultant recommended months ago but that I’ve been avoiding as the side effects include weight gain. (I know, I know, my favourite lecture is about how you mustn’t assume you’ll get all the side effects going, but I know when it comes to me and weight gain I’m doooooomed!)

Any advice on getting rid of the flushes (or packets of roasted soya beans in the post, and instructions on the uses thereof, Maggie, if you’re reading this) would be much appreciated!!

Some good news!

October 19, 2009 at 10:10 am | Posted in rheumatoid arthritis (RA) | 5 Comments
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The hot flushes are back with a vengeance! As anyone who’s ever had them, or has a partner who’s ever had them, will know,that is NOT the good news.

The good news is that although I’m quite convinced from previous fluctuations between hot flushes and no hot flushes, RA pain and no RA pain, that the two are correlated – for me, hot flushes usually means more RA pain and stiffness – this time the RA symptoms remain mild to non-existent. Further indication that the MTX is doing what it’s supposed to be doing.

Even the fatigue has reduced – I’ve had a really busy week – busy at work, making some bits and bobs for a charity stall run by our local sewing group, preparing for my mum’s 70th birthday (the house is full of cake, icing stuff, presents, wrapping etc.) – I had a ‘ladies who lunch’ and shopping trip on Saturday involving 50 minute drive each way to Bury St. Edmunds, and I managed the WHOLE weekend without a day-time nap.

I very nearly succumbed, but just managed not too. I hoped that would guarantee a good night’s sleep last night, but thanks to the hot flushes/night sweats, it didn’t. Oh well … can’t have everything. At least the RA is behaving itself!

I’m suffering from DPS

October 9, 2009 at 5:33 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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I was given temporary hope on this post from Warm Socks at Infinity-itis (Sorry, I can’t find the infinity symbol anywhere) on methotrexate side effects. Remicade Dream commented that she always had a mental fog on MTX day. Ahah, I thought, my problems of extreme dippyness (and fatigue) this week must have been caused by my increase in methotrexate.

I felt better for a minute – hurrah, all I have to do is blame the meds.

Then I realised the horrible truth – I take my m-m-m-m-methotrexate on a M-M-M-M-Monday and I was still being just as dippy yesterday … I actually forgot to go to a client meeting! (Thankfully she’s a nice person and happens to work in the next-door office, so a quick phonecall from here and I was there in a flash.)

Hubby has now identified the true root of the matter – I’m suffering from Dippy Penguin Syndrome. Unfortunately it is, as yet, incurable.

Oops! Pill trays are NOT infallible!

October 7, 2009 at 6:44 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 4 Comments
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I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.

When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.

I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’

You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.

I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!

5HTP update – The Dream of the Crazy Penguin

September 25, 2009 at 10:19 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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I have been taking 5HTP for my fibromyalgia now for several weeks, and my overall verdict is that IT WORKS! My sleep pattern has improved enormously … although Spain did cause a temporary blip! I now get to sleep far more quickly and easily than ever before, and generally if (when) I wake up in the night, I find it easier to get back to sleep than I used to.

I must also be getting better quality sleep because my dreams are SO much less interesting on the whole! I think this is because I’m having less dreams and more deep sleep.

Just to give you an idea of the difference in dreams, here’s a pre-5HTP typical dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP panics, starts to swerve … but it’s OK, suddenly the car is flying. Weee … PP still doesn’t know where she’s going but sails happily over the rest of the cars to a beautiful tropical island. Suddenly hubby is in the car too. They land and … do what penguins and their hubbies like best for a while, before realising the cats are missing. Then a huge panicked chase and attempt at cat herding ensues with much yelling and running around. (At this point … if not before, I’m usually tossing and turning in the bed, throwing the covers around and shouting my head off.)

Post 5HTP dream:

Pollyanna Penguin is driving along a 5-lane motorway and suddenly realises she’s lost. Cars are whizzing past on both sides. PP pulls over and wakes hubby up and gets him to look at a map. They work out where they’re going, hubby takes over the driving and PP admires the view. The end.

It’s a bit boring but so much more restful – my fatigue problems are definitely reduced these days. I can cope with a few boring dreams if I feel this much better for it!

Trying to remember to pace myself!

September 16, 2009 at 9:16 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Feeling sooooo much better after two excellent physio sessions that I went shopping straight after the last one, came home, unpacked it all and attacked my much neglected embroidery, in the meantime sorting out bits and bobs relating to Spain (not least of which is that I’ve finally got the itinerary, but due to a small mix-up, still not got my e-ticket). I am now feeling somewhat shattered and trying to persuade myself that the best thing to do is STOP. Fortunately I won’t take much persuading as I know if I keep going I’ll just put myself into another flare just in time for my little trip. So … night night everybody …

5Htp for Fibromyalgia … and a dose of morning stiffness thrown in

August 18, 2009 at 1:19 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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Well I got my 5Htp (5-Hydroxytryptophan) in the post yesterday and gave it a try for the first time last night. 5HTP is a plant extract which is converted to serotonin in the liver, and serotonin, amongst other things, helps to sort out the balance of sleep – the lack of which is suspected to lead to fibromyalgia. It’s all a bit uncertain and unproven but my sister-in-law-to-be, who has had fibromyalgia for some time, reckons it does help her, so I thought I’d give it a try.

Well I certainly slept like a log yesterday and feel better for it today. Whether it was the 5Htp or the fact that I had an exhausting, though thoroughly enjoyable, weekend, I’m not sure! I shall keep using it through the week and see how I go.

One thing I did notice was that for the first time in a long time I woke up with quite a bit of morning stiffness. Luckily that was at 5.40am, so by the time I needed to get up at 7.00 it had worn off (and yes, I did have some sleep between 5.40 and 7.00!)

I do wonder if a more solid, deep and peaceful night’s sleep does lead to more morning stiffness, because my usual sleep is SO disturbed that my body isn’t resting in one place for long, so the joints don’t have the opportunity to get stiff. My consultant did one of those looks over his glasses when I suggested this a while back, but it seems logical to me!

Reason to be cheerful – revisited

August 13, 2009 at 8:41 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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I was just revisiting my first ever post, about reasons to be cheerful, and I was pleased to see that most of them still stand (the last one doesn’t and one other … if you read it, and if you’ve read some of my other posts, I’m sure you won’t have trouble guessing which one no longer stands! But the point is there’s obviously a lot to still be cheerful about!

While I was at it I thought I’d revisit the nearest post last year to today’s date, and guess what? The car broke down then too! Now that time it cost me an absolute fortune, so another reason to be cheerful is that it’s really not so bad this time. (Although to be honest the car really has got to the point where I should be thinking about replacing her.)

And a final reason to be cheerful is that I’m SO much better, health-wise, than I was this time last year! I was having a terrible time with the RA then – giant puffball knees, every joint aching (or at least it seemed that way) and probably as yet undiagnosed fibromyalgia on top of that! This year it seems that maybe they’ve finally got the medication dosage right (for now anyway) and I’m really doing very well indeed. If that’s not a reason to be cheerful then I don’t know what is! Here’s hoping it lasts – and wishing all my virtual and actual RA friends a similar and long-lasting outcome!

Now if only we could hear a bit more about that ‘one injection cure for RA’ that was being so hyped this time last year …

I’m bloody glad I’m not flaring!

August 13, 2009 at 2:25 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.

No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)

My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.

Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.

I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …

But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!

I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!

Could be that having just had physio helped too!

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