Month: May 2016

The costs of being a “Social Butterfly”

jacksdavie6 Comments

Effort-fully flawless

I’ve been talking about my Gran’s 80th Birthday Party for months. Finding a venue wasn’t straightforward given the necessity of wheelchair access, and a properly “accessible” toilet, plus a function room easily navigated by an electric wheelchair, and a buggy, and enough room to seat everyone else. Through the effort of more than one person, this was successfully achieved.

2016-05-28-11.38.06.jpg.jpeg
All dressed up in my pink lace dress, hair curled, make-up done, with somewhere to go.successfully achieved.

Despite knowing this, I knew I wouldn’t sleep much the night before. There is always too much to think about. Eating little the day before, but drinking the full jug of electrolyte fortified water, helped minimize risk of accidents as much as possible. I knew found a dress that would be comfortable enough for sitting in a wheelchair, and shoes that matched the dress but were still easy enough to walk in.

Getting ready still took me and two carers more than an hour but the finished result was worth it. I still had anxieties over the journey, and surviving the day well enough to enjoy it.

Surviving, and thriving

I found the journey very difficult due to delays and roadworks. Circling roundabouts feels very different when travelling in a wheelchair-access van. The chair pulls you one way, and the roundabout another, despite being clamped in and wearing a full seatbelt. I tell you how relieved I was when we finally landed. I found a corner where I could easily see everyone, and finally settled Eschewing the sparkling wine and orange juice for my usual electrolyte water, I enjoyed all the catching up. My Gran loved it all too, despite protesting months earlier that she didn’t want a fuss! 🙂

img_2996.jpg
My Gran’s gorgeous birthday cake, decorated with purple flowers and lots of twirly icing.

Dinner was lovely, melon and sorbet, followed by roast chicken and all the trimmings, and berry pavlova for sweet. I considered snapping pics of the plates, but decided I rather enjoy it than photograph it all. Drinking decaff coffee all the time means the after dinner coffee energised me. Enough for a ‘walk around the golf course with my mum, grandparents and nephew. Loved the fresh air and wildflowers/weeds. My favourite bit was all the catching up with family I hadn’t seen for months, and being able to whizz round the room in my chair to choose who I wanted to talk to. This was thanks to the room being re-organised by my Auntie the night before. All too soon, it was time to head back to the home. I even had an impromptu leaving party round the van!

 

Post party hangover

I was of course, exhausted when I got back, and continued to feel shattered even after a good night’s sleep. It was 3pm before I was even awake enough to get up. If asked how I felt yesterday, I would have said I was drowning in fatigue, drunk on sleeplessness, despite not touching a drop[ of alcohol. It’s a big effort to participate in family gatherings or other events, and takes a toll on me afterward which I am still feeling today. Staying in bed would have likely made me feel worse, so I got up very reluctantly. Now I’m managing to write, I’m glad I made the effort. I have fabulous memories of the weekend, and photos I can keep forever. I was able to celebrate with my Gran, and the rest of a family I love to pieces. No price can be put on that, even in terms of energy reserves used. The effort required is always worth it, no matter how much ‘recovery’ is required afterwards.

From a modern flat to a big, old home….

jacksdavie3 Comments
12974270_10153389935261898_3412654725083429368_n
A recent photo of me with my nephew, taken in my new room in Nursing Care facility where I now live. 

From ‘independence’ to full-time Nursing Care

In the last little while, I’ve moved into residential care. Not a decision I took lightly but living independently was seriously endangering my mental health. Respite was arranged in a hurry as I desperately needed a rest. A few days after my arrival, I was a different person. I’d had more sleep then I’d had in a very long time, in part due to sleeping on a specialist mattress to try to ease some of my pain. I’d had proper meals, and help with the projectile stoma output which had been giving me so much grief at all hours of the day and night. I very quickly made friends, and there are as many activities available as possible given that the home is maintained by a national charity, and as such, relies heavily on volunteers. I did play more than one game of scrabble that first week, which I loved.

At the end of the week, I hadn’t heard if there were any changes to my care plan at home and I knew I couldn’t go back for any length of time and not get in the same mess. I knew deep down there was no money for any more care at home. Long story short, I’m now in residential care full time. I’m much happier, certainly safer and healthier than I was living on my own, latterly.

Disconnect in Well-Connected Times

Of course, as with any move, there will always be teething problems. These have become apparent very quickly. The manager is trying hard to get something done about the sweltering heat, and the problems with water. The care I have is generally absolutely brilliant, especially now people have had time to get used to the idiosyncrasy of doing stoma care on my behalf. I may have startlingly high levels of pain and fatigue, and the medication needed to manage these has it’s own side effects. Staff have begun to recognise the signs, and remind me to rest often. I am slowly developing my own routine in amongst my varying levels of health. I love visitors and thrive on being around people.

There’s just a weeny problem. The house is old, and has been extended. The house has been blamed for the non-existent Wi-Fi in upstairs rooms but that was only part of the problem. Finally, a solution has been suggested and will hopefully be implemented fairly swiftly. It needs to be. After all, personal care and support is paramount, but access to social support, which arguably includes Wi-Fi is nearly as important. I look forward to the day when I can skype when I chose to, including family as well as my therapist. I am almost wholly dependent on social media for keeping in touch with my wonderful friends, who I really miss, as well as church family and blood family. I also rely on Wi-Fi to conduct research for blog posts, and find other sits to write for. Being a girly girl, I make occasional purchases too.

My life has diminished enough without losing touch with people or losing the blog altogether. These are crucial contacts for my own sanity, some of whom offer online support with my chronic illness and disability. Why should any of this have to suffer simply because my circumstances have dramatically changed? It’s time residential care caught up with the times!

Over to You:

Do you think WiFi access is important in today’s world? Why, or why not?

Do you live in supported living, residential care or a nursing home, is Wi-Fi access considered a priority? Should it be?

Do you have any other comments to make. Perhaps you disagree with me. I’d love to hear from you!