Monthly Archives: January 2013

Spoonie Adventures! 💃

If spoons allow, and I’m not feeling too sick, the most important thing for me to achieve are Spoonie Adventures! Days out, usually just for a few hours, with my fab boys :). They really make my weekends or school holidays!

Museums are a great choice as access is often pretty good, and we’re all entertained (and educated too) equally, as there is always something to impress each of us. An hour or two meandering the exhibits, a stop in the coffee shop for a spot of lunch and some retail therapy in the gift shop, and we’re happy little peeps 😀

Or a trip to the theatre :). There are lots of great shows and events that are either aimed at children, or that families can access easily. It makes for a great Saturday afternoon, sat enjoying a matinee. Although the cinema is great too, there is something special about seeing live performances. A particular favourite of mine.

We also particularly enjoy the range of different places to be found through Groupon – an online UK site that offers special discounted vouchers to different things, which companies can sign up for. It’s a great resource as it’s often new or unusual places that advertise, so we get to encounter totally different places, and at a discount too :). We have a few things on the cards to visit booked, from a small zoo, to a falconry, or a Victorian town! All within an hour or so drive.

We love a range of places to visit, anything goes as long as it’s accessible and doesn’t totally blast my spoon reserves! Spending this quality time with my boys is definitely, definitely worth every spoon!

What is your favourite kind of Spoonie adventure?? Whatever it is, enjoy it!

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Entertainment??? 📺

It’s forecast snow AGAIN today :(. But this time it’s meant to thaw rapidly :). The boys are ultra excited about the idea in the hope of closing schools! But they too are beginning to see the negatives in that we had weekend plans that might just get ruined… Let’s hope we can still escape! All of us could really do with some time out. Maybe a museum trip would cheer us all up?? Something simple and local but entertaining sounds perfect!

We’ll see… If all fails this weekend, the forecast is for warmer weather next week, so I plan on making the most of it. Dog training is a must too, so hopefully our weekly session will go ahead next week??

The one plus in all this is that I’m getting plenty spoon saving time! At least when it thaws again I’ll hopefully have a little energy for the odd outing??? Wouldn’t it be good if we could literally save spoons up!!! Although rest does give us back some, we can’t stock pile lots sadly. That would be amazing if we could! Say one week of rest = a full day or two worth of energy! Mentally though it does have an effect as I get so bored after too long being trapped or spoonless! So once I can get out I truly appreciate it and have the best time doing just the simplest of things :).

A big advantage of being a Spoonie I guess is learning to appreciate the little things ;).

I hope you all get to enjoy a good weekend this week, we’ll all keep everything crossed that we have the weather and spoons to have a great time 🙂

But whatever happens, do take care folks!

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Yum! 😋

I added one more cooking device to our new appliances yesterday, and we tested it out last night! After gaining so much from the things we’d already bought and used frequently just since Christmas, I was tempted by this next one… It’s an ice-cream maker! Yum!! A bargain from eBay ;).

We found a recipe for low-fat ice-cream too – using skimmed milk and skimmed milk powder added too for thickness, sweetener or honey etc instead of sugar and then some blended fruit of your choice and voila! Low-fat but very very yummy ice-cream! We loved our first attempt – pineapple ice-cream :D.

This evening we’re testing a different recipe – strawberry and blueberry frozen yoghurt! Mmm! Why does something so simple taste so much better frozen??!!

Add some sorbets and the odd ‘naughty’ recipe too sometimes too and we’ll have a well used machine!

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Freedom!

Despite falling snow I managed to escape yesterday! With a lot of help getting the wheelchair in the car because of the very slippery pavement, and getting me in there safely too! We made it out into a nearby town for a couple of hours browsing around the shops :). Such a simple thing, but it felt so good to just get out at last!!

Thankfully the town centre was clear of snow on the ground, so I was really relieved. It would have been dreadful with snow for the wheelchair to slip on! But thanks to the council, it was well gritted :). And the falling snow failed to let, so a pretty scene but safe!

Locally, the ground is still too hazardous. The pavements in just my street are still covered in icy snow, so a no go area for me sadly still. But I’m sated for now, I found a few bargains in the sales, and also picked up some travel guides for our summer escape too ;). So a productive time as well as fun!

Today is a home day again, but hopefully I’ll get some of my crafts achieved?? Spoons permitting… Then onwards to the weekend! The forecast is for snow again tomorrow!!! But, it is then expected to warm over the weekend and so thaw or be washed away by rain ;). I do love snow, don’t get me wrong, but being a wheelchair user, or crutches on good days for short distances, makes it just treacherous!!! So I’m happy with just a little snow sometimes, but for it not to hang around for too long!! Fingers crossed then that the forecast is correct and the predicted snowfall doesn’t stay with us for too long! It would be great if we can escape again for a little time over the weekend too…

But for now, having had some freedom and fresh air, I’m a happy Spoonie today 😉

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Stir Crazy!

I’m beginning to feel a little stir crazy being stuck in the house because of the snow!!! It’s been a long long weekend and now another day of falling snow has made it far too hazardous for me to get out again today too :(. But at least today I have my son to keep me company – he’s off school due to the weather too, but he has work to do via the Internet, so busily working…

Thank goodness for the Internet to keep me occupied!!! But I’m really hoping for something more to keep me busy. I was supposed to be meeting at the local coffee shop for a ‘Knit n Natter’ session, but with this snow, I can’t make it :(. However, I’m hoping to have a pattern either dropped off or collected by my lovely son so I can have something constructive to do 😉

If I get creative – painful hands permitting – I’ll post some pics :D.

I’d really like to be able to get back into creating a range of things. For a start, it’ll be the perfect hobby for a Spoonie and also I’m hoping to be able to sell the odd craft for my non-profit too (Still’s R Us). Every little bit counts, and my local coffee shop has offered to display anything I make available for sale too, so the perfect venue for selling too! I’ve also preliminarily set-up a website/blog for the crafts too at – http://www.chronicallycraftycreations.wordpress.com – it’s yet to be fully established, as it will develop as the crafts do, but the hope is there… Now all I need is the ability to create despite these blasted hands!!! Oh, and enough spoons too!

I’m always on the look-out for simple crafts that I might be able to achieve and sell, so do feel free to post the odd comment with anything that may be helpful 😉

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Swelling, Spoonlessness, Systemic Symptoms & Sunday Dinner 🍵

Still’s Disease; =

(1) Swelling – my ankles, knees and hands are a mess this weekend and for most of the time sadly – I blame the snow! But in reality, it’s just disease progression unfortunately 😦

(2) Spoonlessness – severe fatigue is the ‘norm’ with this illness sadly :(. Despite ever increasing steroid doses, fatigue levels are extreme!

(3) Systemic Symptoms – fever, swollen glands and flu-like symptoms are also par for the course with this awful disease!

(4) Sunday Dinner!!! Life goes on… So Sunday dinner despite it all is a must ;).

Joking aside, it can be really tough being a Systemically Sick Spoonie! I can’t do it alone :(, which often drives me mad! Having to rely on my boys for lots of ‘jobs’ is frustrating, but normal in this house…

So all the ‘S’s’ may be fun, but sadly in reality it Sucks!

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What more could I ask for???

Coffee – check, a warm cozy fire – check, food cooking via the bread maker and slow cooker – check, two very happy boys being entertained, one by his dad, and the other his friend – check, lots to read – check… I could go on and on, but the point is, it might be hard living a Spoonie life, but often we should be thankful for what we have 🙂

Yes, I’d love to be out there sledging with the boys if I really think about it. Yes, it would be great to have lots of energy too to enjoy the day with. But I can’t and I don’t, so it’s important to enjoy the little things and appreciate all the things that make me smile :D.

So today, whilst the boys enjoy the outdoors, I’ll enjoy the smells of food cooking, reading the newspaper, maybe I’ll watch a film?? I’m not sure what the day will bring, but I’m sure of one thing – I’ll try to enjoy it! Being ‘stuck’ in because of the snow isn’t dreadful! There will be plenty more days where I can get out again, so there is no point in feeling glum.

It’s time to throw another log on the fire, brew another coffee and snuggle up with something to entertain me 😉

What more could I ask for??? Sometimes it’s just important to appreciate what you ‘do’ have! Tomorrow is another day… I’m Hopeful that I’ll get to enjoy that too 🙂

Enjoy your day, whatever you’re doing!

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Loving it! 💞

We’re all snowed up here! But both my boys are home from school, so I’m happy that we’re all safe and sound. We have food, we have logs for the fire and we have each other :D. The perfect fun weekend is on the cards for the boys, whilst I become chief photographer from the safety of the house – one negative is the wheelchair and crutches are a definite no no! But who cares! I’m happy enjoying the weather through the delight of my sons 😉

Snuggle up warm folks if you’re also affected by wintry weather. It’s going to be a back to nature kind of weekend here. With sledging, snowman building and general fun in the cold stuff!

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Feeling More Human

After 1000mg of Methylprednisolone and my fortnightly Tocilizumab (Actemra) infusions, added with my daily dose of 30mg Prednisolone and lots of Fentanyl Patches, to name just my major Meds, I’m feeling a little more human at last! Thank goodness for Meds 🙂

So I’m making the most of it and getting on with sorting out life and also enjoying some leisure time too. Time with friends at the cinema and a trip to a garden centre another day too has made the perfect week. It’s amazing how getting out a little aids how much better mentally you feel 😉

Let’s hope it lasts for a little while this month… Fingers crossed if I pace well it’ll make all the difference.

To spoons, to Meds to feeling a little more human!

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Cooking Aids – A Spoonies Saving Grace! 🍳

My Christmas list this year, and the odd thing picked up in the sales online too, had cooking as the priority! Trying to eat healthily, but with limited spoons and limited use of the hands too is pretty tricky! So when I spotted some great tools and devices I was impressed 🙂

We’ve ‘tested’ everything now, and I really have to say I’m truly impressed! Everything has been so simple, yet tastes fantastic! And uses so few spoons!!! I can’t recommend them enough!

We cooked Sunday dinner – the potato peeler I still found tricky, but it made things so much easier for my son who helped me. The angled knives meant I could chop far more than usual, and the pan baskets meant I could lift the food and leave the heavy pan until it had cooled, meaning it was lighter, as it just had the water and I could get a good grip with both hands!

Then the leftovers? We mashed up added cheese and a little butter and made fresh pies using our pie maker on another day! An amazing invention!! So easy yet so so delicious!!!

And for lunch one day too?? Panini’s, wraps or toasted sandwiches! All done simply in our new machine!

Need cans?? The electric can opener is just amazing! I can open them myself again!!! Grated cheese – I have two choices – an angled grater, it came with the knives, or an attachment on my new veg slicer too!!! Still gets my hands a little too much, so I needed a helping hand, but definitely an improvement, as it’s made it easier for my son too! But a big bag of already grated cheese saved the day!

Add the bread maker too and I’m in heaven! We’ve had delicious cheese and onion bread, and next we’re testing sundried tomato and basil ;). Mmm, you can’t get better! It also mixes up any kind of dough or pastry or cake mix for you too! So we had homemade pizza too! Far healthier, as you can choose healthy toppings too ;). Ours were loaded with veggies and a sprinkling of garlic too, fab!

With the added foresight to buy things a little more pre-prepared to save those hurting hands and valuable spoons on the bad days too, and cooking has become a pleasure!

I couldn’t be more delighted!

So, although it seemed I had a rather strange Christmas list this year, it really has made an amazing difference! I don’t need more candles, or ornaments or luxurious things! I want things that make my life easier and give me some independence! Happy Christmas to me! I will enjoy healthy home cooked but spoon saving food for years to come!!!!

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