The costs of being a “Social Butterfly”

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.

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! 🙂

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….

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!

In 2016, I’m looking forward to…

Resolve to change NOW!

I have never been a fan of New Year’s Resolutions, and as far as I remember have never kept a single one. While stuck in bed being poorly, I tried to think of an alternative but got a bit stuck until I saw a Facebook post from my friend Bex saying she didn’t see the point in New Year’s Resolutions, because change could be made now, rather than waiting for a specific date. I quite agree, I thought. Just at that same moment, I remembered the film, “The Bucket List” where two men who meet in hospital by chance decide to list all the things they’ve never  done and would like to do before they ‘kick the bucket’and began compiling one of my own.

Teenage Crushes Revisited

I also told sidekicks and friends about it in the hope this would encourage me to stick to it. This had been one of the tips given for sticking to goal setting targets… that announcing intentions means other people can encourage you to stick to whatever you’re aiming for. I started to think, what did I used to love which I no longer do? Almost immediately, memories of my now long forgotten boyband obsession crashed into my head, of my first ever concert gig in a small, sadly now demolished theatre in Aberdeen when I was 12. With my Mum, in the second row, me caterwauling along, or screaming, by turns! The same theatre with my best friend a couple of years after that to see 911. AECC with the bestie to see Boyzone or Westlife, on several occasions. Edinburgh playhouse with a church friend to see Gary Barlow, from Take That. Oh yes, I went to see one or two other artists, Katie Melua was definitely one of them. It was one of her first tours I think, if not the first, at the Clyde Auditorium (aka the ‘armadillo’ ) in Glasgow.

After at least a ten minute reminisce I began searching for upcoming local gigs. Being more restricted than I used to be I decided I definitely needed something which was in the same city as I now live, with space for my wheelchair, and a carer beside me. I admit to squealing when I realised one of my current favourite acco8ustic/acapella groups was touring in the first part of the year, and even better, it was a local event, with wheelchair spaces still available. Those tickets reserved, I began searching my brain for something I’ve always wanted to do. It didn’t take long for an answer to jump into my brain. Food Festivals! Never been to one, and also never properly tried ‘street food; which I really liked the sound of whenever it’s been featured on food programmes. Quite a lot as it happens. Within a few minutes, I’d sorted out passports to an indie food fest. Quite an accomplishment to figure out all this and book it all, within an hour or so, given that I often forget what day it is, or fail to stay awake even sat up in my wheelchair!

Keeping the ‘announcement’ tip in mind, I excitedly told my therapist about my list, delighted to have something very positive to say, and things to look forward to, not to mention having come up with part of the solution to some of my struggles. Being chronically ill and severely disabled is very isolating much of the time, not to mention lonely (though I have fabulous friends and family) and it can be impossible some days to find anything good to focus on, and the days often stretch out in front of me. This is when more difficult thoughts arise, for example “will I still be in this same place feeling like this in (X) number of years’ time? I think of all the ways I am now restricted, and my world contracts much more even that the four walls it often is. This is especially true in times when I don’t have the usual barrage of appointments or sometimes endless admin tasks.

I finally thought of an appropriate title.

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year

I am sure there are other things, but I am chuffed with what I have decided on so far, alongside the events which are already happening next year. I’m still pretending 2016 is more than just a few days away!

Over to you….

How do you welcome in a new year?

Do you make New Year Resolutions?

What are you looking forward to in the coming year?

I’d love to hear your plans and share ideas!

Do I want to take pain medications? The simple answer is no. Just like I don’t want to take any of the medications I am prescribed. But equally I know that those same drugs keep me functioning. That without them I would not be able to write this post, or stand, or walk the few […]

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