Monthly Archives: August 2015

Feeling Accomplished ๐Ÿ˜‰

I read a little of an inspiring article – 100 Day Goal, then wrote my plans for the weeks in September…

  
Then I crafted as my main task today, creating prizes for the page and some gifts for a dear friends birthday…

   
 
Feeling I needed inspiration for the upcoming days, my son went off to the shop to pick up a crochet magazine…

  
So now I have something else to keep me occupied ๐Ÿ˜‰

I’ve achieved a lot and feel very good sbout it๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

But it didn’t stop there…

James picked up some colouring pencils for me for my colouring magazine…

  
Then last night, when insomnia struck, I coloured a little (I could only do a small section because my wrists and fingers throbbed afterwards), but every bit counts right!

  
All in all an extremely productive day!

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Changing the tides…

It might have been a pretty tough year, but I’m not going to let it beat me!!!  Today I’ve been working on changing things for the better…

I’ve been positive and upbeat fighting this chronic illness and I’m not changing that now, so I’ve created a few things to keep my spirits up ๐Ÿ‘๐Ÿป

Firstly a vision board to capture things I’m looking forward to trying to achieve over the forthcoming year…

  

Plus I’ve ordered a fishing net which I’m going to hang from my meditation room ceiling and fill with things that I’m thankful for – a shell from the beach or an inspiring quote, a sweet angel ornament or a postcard from somewhere we’ve visited.  It will be a treasure trove of things we can do and have enjoyed ๐Ÿ˜‰

  
Time to change the tide and move onto pastures fresh…

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A challenging year…

It’s been a pretty challenging 12 months…

Attempting a steroid reduction wiped me out last Christmas ๐Ÿ‘Ž๐ŸปMy prof gave me a horrid prognosis of a greatly reduced life expectancy!Not being able to drive because of my eyes and feeling too unwell put a stop to holidays and far too many of our days out this year ๐Ÿ˜ŸInfections stopped me in my tracks ๐Ÿ‘Ž๐ŸปThen this darn emergency hip replacement has wiped out the summer!

But I’ve kept smiling and positive through it all, no point getting down about things I can’t change…  

According to my past, present & future tarot reading things are on the up ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

On with some fun!!! We definitely deserve some peaceful fun times… 

 Halloween is on the horizon, so we can start off the pagan new year with a Big Bang!

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ย Making the Invisible, Visible…

 You may not be able to see our chronic illnesses, but they are very real to us!  The daily pain and fatigue are things we’ve learnt to live with.

Today we’re making our illnesses visible…
  
    
    
    
  

  

   

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I Have…

It’s been one of those far too frequent nights when pain has kept me awake. The only way I can describe it is it feels like a carpentry team is at work in my joints, remodelling them…
But I’m so thankful that things are far better now than way back when I was first diagnosed!

I have many dear Spoonie friends who have chatted with me during the wee small hours…

I have 150mg of fentanyl to dull the pain…

I have high doses of steroids and biologics too to give me some energy…

I have understanding family and a wonderful carer…

I have Rolo to help me with a range of tasks…

I have fabulous support and understanding from my GP, prof, infusion nurses and Rheumy nurses, district nurses etc etc…

I have my home sorted with all the adaptions and aids that I need…

I have a much more positive attitude to handle adversities…

I have fabulous sons who truly understand…

I have purpose with my pages to help others…

The list is endless!

I truly am very very blessed!

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Finding Solutions…

Now my mobility is improving a little (I’ve used crutches and a wheelchair for years, but this hip replacement made it worse obviously), I’m finding solutions to problems I’m encountering…

Carrier bags – fabulous for carrying anything from empty cups to shampoo bottles!

A grabber – hugely helpful for picking up things, feeding my assistance dog or helping me to get my pj bottoms on ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

A child’s sports water bottle – the perfect way to get a coffee โ˜•๏ธ

Seats, seats & more seats – my perching stool in the kitchen, raised sofa, toilet seat raiser & shower seat have always been my saviours!

My stairlift – absolutely essential!

A powerchair, especially since my disease effects my hands and arms too so self propelling is impossible.  It has to be one of my best aids as it gives me such freedom!

Gadgets for the kitchen – from angled knives to aid chopping, to a slow cooker so I can cook when spoons allow then leave it when I’m shattered.  From electric can & bottle openers to a kettle tipper.  I have lots and lots of things so that I can do things independently.

Shower aids – a long handled wash scrunchie and a hair washer, a grabber for dressing and no buttons or zips on my clothes.

The list goes on and on…  But I’m sure my OT will come up with more as time and disease progression goes on…

Freedom!!!  So essential for positive mental health ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป
Now all I need are enough spoons so I can achieve more…  I’m asking too much now!  But every little helps ๐Ÿ˜‰

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An Amazing Achievement!

At the age of 14, my eldest son has climbed the three peaks of England, Scotland and Wales to raise money for research into my disease in the hope that something can prolong my life.  I couldn’t be more proud!!!
   
   
Please donate, every ยฃ1/$1/โ‚ฌ1 helps hugely!  www.justgiving.com/Cory-Alcar

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A Great Day…

I woke up and my pain was bearable so I could hobble to the bathroom on my crutches instead of having to use my wheelchair ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I enjoyed a cup of coffee.  My medication makes me nauseous so one cup is my limit, but I so enjoy it when I can drink it ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I took a shower, wonderful for pain relief – a major achievement for many fighting chronic illness as it totally zaps our energy ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I changed into lovely clean pj’s thanks to my multiple dressing aids ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I helped my son and carer prepare dinner for later, so I feel like I’ve accomplished something ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I napped for a while, wonderful as it’s difficult to sleep at night because of the pain.  Now I feel a little more human again ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I watched some funny comedy on TV, it kept my mood light and made me smile, plus it meant I could share some quality time with my children ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I cuddled my assistance dog, the perfect therapy for both of us ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I chatted with my online Spoonie friends from around the world.  Having others to talk to is lovely, but my real, local friends soon vanished as I’m no fun, but my online friends are always there for me ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I did all my grocery shopping, online shopping with home delivery is a godsend!  Now well have healthy food for me and my boys with minimal energy zapping ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I enjoyed my dinner, my only meal of the day as pain and nausea suppresses my appetite, lots of antiemmetics and strong pain relief meant that my dinner was yummy.  Thanks to my son for cooking and serving it ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

I slept for a few hours during the night, here and there, broken with pain, so I watched TV to keep me smiling ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

All in all a great day for a chronic illness fighter, a very good day ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

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A big shock!!!

It started on Wednesday…  I had my cataracts operated on recently, steroid induced at the age of 42, and finally got glasses, so was delighted to drive again.  Off we popped, my carer, known as a PA (personal assistant) and I for my regular fortnightly infusions, but I drove for a change.

On returning my hip started to hurt, so I thought the AOSD had kicked off due to driving.  But as the days went on it just got worse until by Saturday I couldn’t stand at all!

A&E (ER) here we come!  And after a lot of pain to get to X-ray I found out my hip had badly fractured!!!  I didn’t fall at all so it’s either cancer or rapid onset osteoporosis (I’ve been tested frequently by a specialist & treated with calcium, vit D & alendronic acid for years!) due to very high dose steroids.  I’ll find out in outpatients soon…

But I’m home – 2 days post op!!!  And I’m finding the AOSD pain tougher to bear than the hip replacement!  Shows how much pain we live with!!!

I can’t thank the NHS enough!  Drs working through the night to get me sorted and reasonably comfortable & operating on a Sunday too.  Nurses taking such good care of me and even leaving late to accompany me to X-ray the morning of my op.  The pain management team for keeping me comfortable – I loved the PCA, and had ketamine ready if needed too.  OT’s and Physio getting me back on my feet so rapidly (I already walk on crutches, just for short jaunts and use a powerchair for the rest, but I was amazed I could do it all again just the day after a total hip replacement!!!).  And now I’m home my GP for phoning and adjusting my fentanyl and antiemmetics, I’m much more comfortable, and the soon to be visiting district nurse too.  Not forgetting social services for getting me the few extra aids I needed so quickly.

I also can’t thank my family enough for everything they did and continue to do!  My sister in law took my boys under her wing so they were happy and busy on my op day, and my husband whom I’m separated from, but a fabulous friend now, for taking me to A&E, looking after the boys, visiting every visit, and now staying on my sofa every night for a few days whilst I get a little stronger.

My carer (PA) is back later too, so I’m sorted ๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป๐Ÿ‘๐Ÿป

Thank you, thank you, thank you!

Let’s try to have a bit of a rest from hospital now, except for my usual infusions and outpatient visits…

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