Week 13 – outings spoonie style
Getting out in those better days is so vital for my happiness, so I plan outings with friends and family as often as I can. Now the weather is perking up I’ve started planning outings by finding interesting places to go to that won’t zap me then writing them in my calendar on my phone. Yes, I might not get to all of them as my illness dictates my ability to go out, but I can hopefully get to many.
Those I don’t make it to I can move to another day and then try again…
But I won’t give in to this illness. Yes I’ll feel dreadful after going out, but I’ll have some fun and some wonderful memories to treasure.
Another problem with outings as a chronically sick and disabled mum is that I often can’t participate in lots of things so I spend my time just watching. I’ve found a fun way past this by being the chief photographer. Sitting in my wheelchair watching is now lots more fun as I happily snap away.
Taking photos also means you look on things differently. A wander in the park is now a time to see the beauty in everything as I constantly consider possible photos. An outing with the boys is me enjoying watching them appreciate the adventures and gaining much pleasure from there fun. It really helps.
Life is too short to give in, so I’ll keep those little outings coming!
Lots of rest afterwards and I’m ready for my next outing…
Week 14 – home days
Home days are very frequent in my life as I’m often just far too fatigued to go out. So what do we do to keep happy???
I love crafts, but find them far too taxing on my hurty hands. I love reading, so do read when I can concentrate. I also love watching films and interesting documentaries. But most if all I adore keeping in touch with my fellow spoonies, mainly via my page on facebook.
Seeing that my positive posts truly make a difference is awesome and keeps me motivated, feeling useful and genuinely content. Writing here is a by product of that as its where I post my bigger things.
I truly appreciate the responses I receive. Long may it continue…
Week 15 – independence
I don’t accept the ‘I can’t’ mindset. Yes I can’t walk without crutches and inky indoors, but I can zoom around in my powerchair. Yes I can’t do a lot of things because of fatigue, but I can concentrate on some things and feel accomplished. Yes I can’t do many things due to my physical disabilities but I can source ways of overcoming these via disability aids. You get the picture.
It keeps me very happy to feel independent, so I fight constantly to find ways around difficulties I face. I will do it if I can…
I’ve accumulated many disability aids along the way at bargain prices on eBay or from cheaper care stores, and often as gifts for birthdays or Christmas etc., to ensure I can do things.
Being independent does make us happier.
Week 16 – random acts of kindness
We might be facing adversity, but that doesn’t mean we can’t help others. Practicing kindness doesn’t have to cost either and it truly does make us happy.
I entered a competition this month to win 40 copies of The Happy Newspaper. The reason I won was because I said I would donate half of the copies to my hospital, the day case unit I attend every fortnight, and the other half to Clatterbridge, where my carers husband is having chemotherapy. She was so touched, she made me a winner! I was delighted!!!
I like to do small things whenever I can to help others, however small.
I’ve also received wonderful kindness too, from someone cleaning up after my assistance dog, to having my meal paid for in a restaurant! I’m incredibly touched and grateful when anything kind happens to me and my family, so I know how it feels to receive kindness. It’s so lovely!
Go on, be kind today, it’ll make you feel so good!
Concentrating on things that make me happy each day helps me to be grateful with what I do have, despite chronic illness and disability.
Today is a challenging day as I’ve felt so exhausted due to my usual fatigue and iron levels of only 4!!! Tired doesn’t even begin to explain it! But I’m grateful for my cozy sofa which I’ve curled up on sleeping and reading when I have been awake, which leads me to my second thing, good books to keep me entertained. Lastly my handmade spoons arrived today, which I just love!
These things have kept a smile on my face 😄
Stay thankful, it helps hugely!
March…Week 9 – pampering
This has been the month for pampering. I started out finding a new reiki and reflexology therapist as mine has moved house, but I wanted one who came to me since driving is much tougher with the hand controls. I found the perfect one, she even performed my treatments with me lazing on my sofa with my feet up on a foot stool! So no clambering onto a therapy table!
Next I had my hair done. My usual hairdresser has gone on maternity leave and the hairdressers salon is up three steps, not ideal in this hip brace, so again I needed a new person. So a mobile hairdresser seemed perfect! He came and I felt truly pampered, perfect, plus my hair is easy to style too, just the ticket for iffy elbows, shoulders and hands.
Having had all this I fancied one more treat so I booked a nail technician to call. I’ve never had my nails done before, it was blissful, and now I feel good too.
Week 10 – spreading my wings
Next month I’m looking for a few more things too. I love meditation and practice guided meditations usually daily, but I’d love to go to a group meditation. I’ve now found one in my nearby town where I can go by train and chill out for lunch and a drink afterwards with a friend, perfect! I’d also like to try chair yoga, so I’m on the search…
Add my new found hobby, wheelchair golf and my time will be filled with happy things! I’ve found clubs on eBay, so we’ll be off playing as soon as the weather is fine and the course is dry. I can’t wait!
Hobbies and a few hours out combined sounds ideal! Yes there will be times I’m just not well enough, but I can enjoy going when I can.
Week 11 – my spirituality
I’m pagan, but until now I’ve practiced solitary. But recently I’ve been on the search of things to join. A moot sounded ideal but I’m struggling to find one that is wheelchair accessible sadly.
But not to be stopped I started an online moot to join with fellow pagans around the world, hopefully it’ll take off and we can share our experiences together.
I also enjoyed a psychic supper this month, a regular event at a nearby town where we meet, have dinner and a reading. Mine was so accurate and positive, and I received much helpful advice. My dinner companions enjoyed it too, so we plan to visit again, another regular get together I can look forward too…
Week 12 – making my home cozier
This will kill two birds as firstly I’ll feel happier and two, my home will be more appealing to buyers.
So my closest friend rearranged my bedroom and later my chill out room too! I love them both! Now I can snuggle up in bed and watch tv with fairy lights twinkling softly, perfect for those far too often nights I spend battling insomnia.
My chill out room was unsuitable for my limited mobility so we moved the hammock I had in there into the garden and brought my comfy chairs in there instead. Again I’ve used fairy lights and a salt lamp, so I can use it as a meditation space. Alternatively I can turn in the full lights and just read in there when I want a change of space. Perfect!
I spend a lot of time at home so it’s important to be able to feel happy and relaxed in my spaces.
I used to love knitting, but struggle nowadays with my painful hands. A fellow spoonie recommended loom knitting, so I ordered a set and took them along to my local knit and natter group…
It was a big fail! My fingers hurt hugely with all the hooking over it entails 👎🏻👎🏻👎🏻, but I wasn’t giving up so I tried using large bamboo needles.
It worked fabulously! Yes I can only do a little at a time, but every little counts 😉
I chose something very quick and simple for my first creation…
A dog cowl!
He loves it so I’m now starting one for his mum 👍🏻👍🏻👍🏻
Knitting spoonie style, sorted!!!
My first guitar lesson was fabulous, he was amazing!!!
I now have three chords and two songs to practice 👍🏻, that should keep me busy 😉
I’m strumming using the backs of my fingers as it’s much gentler on the wrists, the perfect solution 😄, and I’m managing to stretch to the chords so far 👍🏻👍🏻👍🏻
Wearing my wrist supports helped hugely, but my neck took a beating, so I might need to wear my collar too, we’ll see as I practice…
Time for pain relief and my bed, but I feel so accomplished 😄
February…Week 5 – hospital appointments
I have a few hospital appointments this month, which can be zapping and boring at the same time. All that waiting around! But I’ve learnt a few tricks to get through…
Taking magazines to read in the waiting room, always having someone to drive me there and back, checking out facebook whilst I’m sat there. My carer even takes sewing with us to keep her occupied! Anything at all to while away the time.
Longer visits, when I have my infusions every fortnight, I save something to do. Catching up on my mail, making phone calls, those chores I put off. It kills two birds in that I get the jobs I hate done whilst I’m bored and ready to tackle them.
Week 6 – hospital stays
I had a bigger stay than planned this month when my new hip dislocated! So I was tested to the limit! But I kept my positive head on and remained smiling, after all, I was blessed with the NHS to pop it back and take good care of me whilst I waited for my new hip brace to arrive.
I chatted with the other inmates, watched tv, and popped on my headphones so I could be distracted with audiobooks through my iPad. Time soon passed…
I survived, but I was very happy to escape!
Week 7 – feeling unsafe
I left wearing a very restricting hip brace… So no driving and I felt totally unsafe in my house after being stuck for four hours waiting to be rescued.
But I wasn’t planning to let this stop me. Keeping smiling and positive always pulls me through adversity. So firstly I set about learning to drive with hand controls, a tough thing to master but by the end of the month I was driving to the hospital and back, a half an hour each way trip down two motorways!
The second thing I did was put the house onto the market. A move to a bungalow seems the ideal plan. Although I have a stairlift I need that extra security a bungalow will bring. Fingers crossed for a quick sale…
Then lastly I had a careline alarm fitted at £2 a week, it’s worth every penny for the security it brings! Now help is just a button press away…
I have a matron from my Drs surgery visiting soon too, to see if there is anything else that can be done… We’ll see…
Being proactive has kept me positive and smiling through it all.
Week 8 – connecting with others
On better days I enjoy nothing more than spending time with friends and family. Be it a meal together at home or a little visit to a pub to enjoy lunch and a drink.
This month we arranged a meet up with my sister in law and brother in law at a pub some miles away, so we decided to go by train so that we all could enjoy a drink as a treat. I can’t drink much with all my medications, but I wanted to relax. So the train it was. I was delighted with the ease of our journey.
At each station we were met by a guard helping me to get on the train in my powerchair, and on arrival helped off, guided to the next platform and helped on again. It was a painless journey and I’m truly thankful to the lovely staff.
We had a lovely day and plan to enjoy many more get togethers in the future.
Living life as a chronically sick and disabled person can often be very unfulfilling. We barely survive the day, never mind doing things to challenge us! But it’s an essential thing to feeling happy…
Running my page keeps me feeling fulfilled on those bad days, but what about on those days when I want a little more???
So I went on the search for things I could do, despite my wheelchair…
Wheelchair golf came out a good contender, so I had my first lesson yesterday 👍🏻, despite the bruises on my wrist and the shoulder, elbow and wrist aches, it was worth it for the personal satisfaction! I’m learning to play one handed from the side of my wheelchair, a technique I’d never have picked up alone. It was a fabulous lesson and I look forward to going back later in the week…
Guitar playing also inspires me, so I’ve booked my first lesson for tomorrow… I’ve always wanted to play, so why not now??? The teacher is coming to my home, so no excuses about getting there either, and it’s something I can practice when I can’t get out 😉
Knitting is another hobby I used to love, but now struggle with my wrists and hands 😒. However I’m trying a loom knitting method once the looms and book arrive 👍🏻👍🏻👍🏻. Hopefully I’ll be able to tick another challenge off my list… I’m planning to take everything along to a local knit and knitter group, so I can learn from them and gain social time too! Perfect!
I’m aiming to fundraiser with these challenges, so do help by donating just £1/$1, since if many do this it will soon add up. My justgiving page is; https://www.justgiving.com/Sue-Alcar-Arthritis. All funds are for arthritis research to hopefully find new medications or even a cure.
Being a spoonie means I have a lot of time on my hands so I try to do things which make me smile 😄
On good days, when my best friend is free I like to get out, just for an hour or two as a break from these four walls. Ideas for things to do which don’t zap me too much and I can accomplish from my wheelchair include;
Visit towns and villages
Wheeling along the canal, in a park or beside the sea
A Pub meal
A Meditation Class
On bad days when I’m stuck at home there are things I can try depending on energy levels. Ideas include;
My facebook page
What do you do to keep you smiling 😄