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Posts Tagged ‘Paying the Price’

This weekend has been wonderful for lifting the spirits. Yesterday, I went for a short drive to town, which happens to be on the coast. I only stayed in the car, while the boyfriend nipped in and out of shops on the retail parks, but it was nice to get some fresh air and see the world flying by, instead of being stuck inside. Saturday was also both my Mum’s and my Niece’s birthdays and I was looking forward to spending some time with them today; making plans for the afternoon ahead, wrapping presents, buying balloons and special treats.

My brother brought my niece to visit this afternoon and stayed for Sunday dinner. They don’t live locally and I don’t see as much of them as I’d like to, so this was even more of a treat.  It was her first birthday and even I can’t believe how fast that first year has flown, she’s turning into a little individual and it’s lovely to see.  She opened her presents, had a play with her new toys and the helium balloon we’d bought her, then we all took turns in having a cuddle with the little wriggler; she will be walking soon and already speedy in getting about! After dinner, we all drove to my Mum’s to wish her Happy Birthday with some cuddles from her grandaughter. I hadn’t seen my mum since being discharged from the hospital two weeks ago and I  admit I was in need of some cuddles too hehe (You’re never too old!).

It was a struggle getting to/from the car on the crutches but once I was inside I at least had a ‘proper’ chair to sit on – I’ve mentioned the carers that visit me at home keep complaining about our sofa being too low and wanting me to purchase a special armchair… well I had a brainwave last night.  My nan had one such chair and when she passed away, four years ago, we couldn’t bear to part with it and it has sat in my sister’s bedroom ever since. It is absolutely perfect for me right now, so we have brought it home for me to sit in during the day. My nan was always a huge support to me when she was alive, I talked to her a lot about my illness and she would try anything she could to bring me relief – from adding me to the prayer lists at Church and bringing me Holy water from Lourdes, to looking into alternative therapies, treatments or foods and buying me useful gadgets to take the pressure off my joints. I think she would be really pleased to think that something of hers is helping me now; and sitting here I feel like she is with me somehow.

So a lovely weekend in all, spent with most of my favourite people. It’s amazing how these times can have such a healing effect on the body and the soul, even considering how much it has taken out of me physically (and believe me, I am exhausted now!)

I hope I don’t suffer for it too much tomorrow, but even so it will have been worth it 🙂

L

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Usually, when I talk of rollercoasters, it’s in relation to the rollercoaster nature of this disease – the ups, downs, twists and turns of Still’s Disease… but today I’m talking about the real thing.

Yesterday, I fought fire with fire and went to Alton Towers.

Okay, so it probably isn’t the best thing to do when you’re flaring, BUT the thing is… I wanted to! I hate missing out on things because of the Still’s and I knew that I was coming to the end of the ‘steroid boost’, meaning the flare is probably going to get worse again from here unless the Tocilizumab is effective.

Plus, it was my friend’s 30th birthday and what better way to celebrate than fearing for your life (Being 30 doesn’t seem so bad after all that). I surprised myself by going on every ride apart from Nemesis; I didn’t think my wonky knee would appreciate the dangling and swinging about. At least on all of the other rides you are strapped in very securely and they are ‘steelies’, so very smooth coasters. My favourite was a ride called Air, a rollercoaster that you ride kind of lying on your front – actually very comfortable! – and which gives you the sensation of flying.

I must admit I am shattered today but it was worth it for all the laughing I did.

L

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Things have been pretty stable since I increased the Prednisolone again a couple of weeks ago, I still have some pain and general wonkiness but it has been manageable.  So when my amazingly fantastic friend suggested an outing to the zoo yesterday, I didn’t even hesitate – I mean, Lions and Tigers and Bears…oh my!

We had a brilliant day, seeing all the animals (my favourites being the Lions and Red Panda  – the cute little fella in the picture ^), but the best thing was that I managed to keep up with all the walking, and we did quite a bit of that. In fact, I almost forgot about all the Still’s stuff and just felt like my ‘usual’ self.  Hopefully this is a good sign of things to come – it is only a month until we go to New York now after all 🙂

I have been a little extra tired and sore today, but that’s the price we have to pay sometimes and it’ll pass. The HS has been flaring up something rotten and I seem to be glued to hot compresses, but at least this time next week it should all be sorted out – if the surgery does go ahead.  It’s due to be another busy week actually, with my fourth infusion on the Thursday too. I’m hoping to see some improvement in the blood test results this time, to reflect how I feel, but once again  I wonder how will we know if it’s the Orencia or Prednisolone?

A conversation with my amazingly fantastic friend, at the zoo yesterday, got me wondering what animal I’d like to be / come back as in the ‘next life’ …it would have to be something fast and energetic, to make up for the lack of these qualities now – so maybe a little monkey that swings through the trees, or a sea lion, which look so carefree gliding through the water!

Any ideas?

L

Ps. Ketoprofen has now been added to the Treatment Section; next – Prednisolone!

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Just a mini post.

I’ve had a couple of good days this week; not sure what I owe them to but hey, I’m not complaining.  Today I went on a bus into town for the first time in… well a long time!  I went with my boyfriend’s grandma and she moves at my pace so that was reassuring.  We had a wander round the little shops and then stopped for some lunch and a warm drink before heading back, but I was out of the house for about three hours and it felt good!

I’m tired now, but worth it tired.  Although, I think I did have a mix up with my painkillers – we were out when I was due a dose and I missed it and couldn’t remember whether I took it when I got back (brain fog), so just taking my next one before bed.  This means I could have missed a dose, or maybe two…oops. I’ll have to try and take one during the night because the other day when I missed a dose it took it’s toll the next day.

I’ve now got my pyjamas on, my feet up, with a lovely cup of Horlicks, watching a cute kids’ film called Marmaduke (a must see for any dog lover!), then it’s an early night for me.

All in all a good day; maybe things are on the up 🙂

L

Ps. I’m also blaming Mtx ‘Brain Fog’ for the fact that I poured water from the kettle over my cereal this morning, instead of into my teacup… :\

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Still feeling rotten after the weekend, don’t think I have helped this flare at all.  The pain is now in both arms, knees and hips so that I’m finding most things pretty difficult and needing quite a bit of help; plus the fevers and rash are coming through more too.  I know it’s my own fault, that this is the price I have to pay for a few hours of fun, but I’d probably do the same again – not sure my rheumy would be too pleased though. 

Was I wrong to go? Should I have stayed at home and continued to put my life on hold for however many more months?

I rang the secretary and explained what had been discussed with my rheumy last Thursday and she’s added me to his clinic in the morning; it’s a 9.30am appointment, which means a very early (and creaky) start but hopefully it will be worth it.  I’m guessing the elbow will a need a shot of cortisone as that is still the worst affected joint; that extra steroid should help me in general though. I’ll also be able to show him my latest blood results, which they printed for me this morning when I went for my fornightly trip to the nurse.  A lot of them are starting to look a bit iffy and my inflammation markers are getting higher every time, so at least I know it’s not all in my head (which certain people make me wonder sometimes).

So here’s to tomorrow.

L

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Ugh

Yes, I was right; I had an amazing time last night but can hardly move now.

Back to bed I think…

But I'll leave you with a lovely photo that I took at the cause of today's pains and woes, worth it?

L

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Well, after spending pretty much all of yesterday sleeping in order to build up some energy reserves, I think I am feeling well enough to go to see Take That later on today.  I know that I will probably suffer for it afterwards, but this is something that I have been looking forward to for months and I have barely done anything this year so I’m taking the risk.  We’ve still got to have some fun right? 

I’m going with people who do understand that I’m not doing so great at the moment, so I’m sure they’ll look after me.  The main thing I’m worried about is that we have standing tickets, so I will be standing for a good few hours when I have even had to cook sitting on a kitchen stool recently.  I’ll just have to deal with things as they come I guess, at least we are taking the car so if things do go pear-shaped I can get home pretty easily.

Despite all that I’m really looking forward to it; I’m not the biggest Take That fan but they put on such spectacular shows that you can’t help but love it.  Plus it’s time with friends.

Wish me luck.

L

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