A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
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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

Zzzzzzzzzzzzzzz…..

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

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

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 …

19 Comments »

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  1. Hi just received my first post from you after signing up recently it’s just so nice to read about someone who so understands ra:):)

    I’m wrapped In heat blanket ( a trendy one which I only got yesterday watching the paperboy on netflix and I have to say its very relaxing it was a tip I found on the nras website. Looking forward to your next post😀😀

    Sue

    (Gemma my daughter ) she sorted the phone out for me that’s why it comes up with her name lol Sent from my iPhone

  2. I love how you did this, Penguin! And really, it’s amazing how much RA symptoms can change as time passes. Thank goodness we’re living in a time when the drugs we take for this disease actually DO make a difference. And with all the research and all science is discovering about it, maybe there WILL be a cure for RA in our lifetime. Fingers are crossed.
    Sending a warm hug over the wide blue water to you… :)

  3. Hi Sue and welcome to the blog – what a great idea – I may have to get myself a heat blanket; I didn’t realise they came ‘wrapable’. If someone says heat blanket I automatically think of those underblankets that people used to set themselves on fire with when I was a kid – but these new fleece wrap heated things look great!

  4. Aw, thanks Wren. :-) You’re so right about the drugs – I may spend quite a bit of time moaning about them, and they may not be perfect but we’re almost infinitely better off than say 50 years ago!! Here’s hoping for the cure – and transoceanic hug to you too! :-)

  5. Really enjoyed this latest blog and recognise oh so much of it. Fortunately at my diagnosis stage I was invited to join a 2 yr research study looking at the difference made by using radically aggressive medication intervention at a very early stage v usual RA experience (eg your’s). Two years on a self administer once a week 2 separate injections. One of 20 mg Methertrexate – I had to stop the oral stuff and reduce the 25 mg due to a range of nasty side effects. My other jab is 50mg of Etanercept – a biologics anti TFN. The research programme was challenging and not for the faint hearted as it included long appts, form filling, ultra sound scans, uncomfortable MRI SCANS, x rays and a range of other tests. However , I’m now almost free of morning stiffness, can use my hands again , go walking thanks to Podiatry dispencesed orthotic insoles, do 2 free gym sessions a week & generally enjoy life much more . Any downsides ? Yes, as I can now only have the very occasional alcoholic drink and no blue veined cheeses, fresh mayonnaise or pate due to my medications, but figure that’s a small price to pay. I still have the odd ‘off ‘ day and still have probs with my feet, wrists and shoulders but all in all RA life is good.

  6. Hi Connie, Great to hear such a positive story (although I’d hate not to be able to eat blue-veined cheeses even though I hardly ever do!) :-) I think we’ve probably reached the same place RA-wise but you probably reached it much faster than I did, which is great! I’m hearing a lot now that aggressive early treatment is the way to go – so thanks for being one of the people that helped to prove that!

  7. It’s amazing the difference that 6 years can make! I’m still stuck at the March 2008 phase but without any meds, but I think everyone has been there and most people have gotten through it, so it’s encouraging to see the progress you’ve made ;) especially for someone at the start of the journey

  8. Hi Jenni, Well I don’t THINK I’d have ‘got where I am today’ without the meds, but we’re all different so I hope it all goes well for you. I’ve just found and started following your blog – very best of luck with the physio degree!! Hurrah for physios – they’ve done wonders for me over the years too!

  9. I’m hoping that my Rheumy gets a grip and starts to at least try to find out what is going on with me, and so I hope to start meds…. That’s odd isn’t it, actually wanting to take meds.
    And thank you :) my physio has done wonders for me too!
    Hope you are well :)

  10. Not odd to me at all wanting to take meds – mine started off with the attitude of ‘you probably don’t want to take methotrexate so let’s try …’ and I’m thinking, ‘If that’s the best one, just give it to me!’ but I wasn’t speaking up for myself as much then as I do now, so I spent six miserable months on what, for me, was the wrong med first. I can’t blame anyone for that though – unfortunately it’s still guesswork to a large extent when it comes to what are the right RA (or JA I presume) meds for whom! How long have you been seeing a rhuemy and what are they doing for it so far? SOMETHING I hope!!

  11. I have the same mentality as you, I would prefer to take methotrexate if it had the best chance of working!
    Do you speak up now? Like tell your Rheumy what you want etc?
    And I’ve been seeing this Rheumy since I was 13 or 14 but I’ve not seen her 4 times… I haven’t seen her in 15 months because I feel off of her lists but I’m seeing her in may… And I’m supposed to be on an NSAID but I can’t because of the headaches it gives me… And I’m waiting for hydrotherapy… Have you ever ah hydro?

  12. Hi Jenni, I do speak up now … but only up to a point! I should probably still do so more. You really need to say ‘Look, woman, this is MY life and these joint problems are spoiling it – don’t mess me about – I’ve had it three/four years now, what’ya gonna do about it …’ only MUCH politer than that! You could just say, ‘I can’t take the NSAID because of the headaches – is there another one I can use, and if not what are the alternatives?’ Get her to lay them out for you and not get away with just saying, ‘Off you go, see you in a year or so.’

    I’ve never had hydrotherapy ’cause I’m incredibly lucky in that my symptoms are mild, so it’s never been suggested – also there’s rather a lack of places to go for it round here in rural Norfolk! Good luck with that though and I hope when you get it, you’ll post about how it goes.

  13. I think we all need to speak up more really… It’s difficult though, because technically the doctors don’t have to do as you request. And yeah I’m not exactly going to rant at her in May but I’m going to “politely” tell her what I think of her and the system… Thankfully I should be able to move up to adult services so this will (fingers crossed) be the last time I see her…
    I think that my symptoms are pretty mild too, which is partially why I feel so lucky to be offered hydro… I think my physio is at her wits end after about 7 years of physio… Have you found physio benficial?

  14. No, docs don’t have to do what we ask, but if we don’t ask they certainly can’t do it – so it’s always worth asking … in a staying polite kind of a way. And if you ask intelligent questions they’ll probably be so happy to have a sensible conversation that you get some good answers – and you’re obviously going to ask intelligent questions because you don’t only have the patient experience but also the scientific interest.

    Physio has been absolutely brilliant – if you do a search on the blog you’ll find a lot of positives about physio but a lot of negatives about the NHS, the admin teams, the referrals etc. Once you GET to physio, the physios have (almost) all be great. As I was typing ‘all been great’ I remembered one notable exception, which was probably my most recent physio post – but on the whole they’ve been terrific. Luckily for me I haven’t needed any for quite some time now – I still have the exercises they taught me though and do them when I need to … but not as often as I should!

  15. I try to ask intelligent questions when I go, but quite often they don’t sound as intelligent as intended… And quite often she dodges questions that I ask.
    That last physio you had, the one who was going on about acupuncture?! She clearly hadn’t read your notes, which is sad actually because it help up your appointment…
    I still do the exercises they taught me too! Although I’ve even given exercises for the swimming pool while I wait for hydro….

  16. LOL – I can sympathize with not sounding as intelligent as intended – sounds familiar! You could try not to let her dodge i.e. keep going back like a rottweiler with a bone – but it’s hard!

    Ah, it was that one that was the last physio post – I thought so – yes, very naughty of her. Trying to save time just ended up wasting time!! On the whole though the phsyios have been excellent – very helpful indeed. :-)

    I hope you get your hydro soon!!

  17. Wonderful post, Polly. To me a theme that came shining through is hope. When you compare where you were in 2008 vs. where you are today, it’s wonderful that there is hope for improvement and a full, busy life. Congrats on being invited to the carnival!

  18. Carla – everyone’s invited m’dear – all you have to do is sign up on the WAAD site (link in my post) and away you go! I’m sure they’d be DELIGHTED to have a post from you too! :-) And it’s not too late – Lorna will keep on posting anything that comes in up to the day of WAAD!

    Glad you enjoyed the post – and definitely agree, there is lots of hope and it just keeps getting better at the moment – more and more things are being investigated that will hopefully help us all in the future. Flippers crossed for your latest intervention – I do hope it’s the answer for you!

  19. […] challenges and have victories (however large or small) over the disease. I was especially taken by Pollyanna Penguin’s “Life in the Day” post where she contrasted her life today with when she was first diagnosed. Her life is certainly not […]


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