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.

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.

The explanation for my absence….!!

Dear lovely followers, (should I have any left?!) If you’re reading this now, thanks for sticking with me! As you might have noticed, I haven’t been writing much over the last week or two. There is more than one reason for this, but I can only go into a couple of those here. You might remember reading about my little accident a couple of weeks ago now. I thought then I hadn’t done any lasting damage, not even to my knee, but unfortunately, I have. How long it may last, I don’t know, but the healing process may take a while. Though I live in England and have the backup from the NHS, I’ve been having to fork out (pay up!) for physiotherapy, originally for chronic pain in my back. So bad, that had I not gone private, I would have had to start being hoisted, say, from my chair to my bed, within a few months to a year, because of the severity of the pain and the level of restriction the pain caused. Fortunately, it is making a difference, but because this meant I was already regularly seeing a very good physiotherapist, I knew that if between the physio and I we could work out what the problem with my knee was, she would give me as good advice as she could. I was getting to the stage with my knee where the pain in my knee would cause my leg to collapse underneath me. An absolute nightmare for anyone with any mobility problems, never mind how someone who has mobility as poor mine is. I am still attempting to transfer front on, with the help of my zimmerframe, rather than side on with a banana board as the strength, co-ordination, and control in my arms is far from adequate for this. For those of you who know about chronic pain and/or life altering physical disability, I am sure ou can well imagine how difficult tranferring had become. Aditionally, my leg collapsing would cause my knee to spasm, which would greatly increase the pain, which would mean putting even less weight on my leg than I could all ready…!! This meant I was willing to let the physio do whatever it took to work out why I was in pain and how to help it get better. What she did have to do may well may you wince, as she had to ‘create the pain’, i.e. get me to take two or three steps so she could see it collapse, and once I was sat. prod my leg to fine out where the pain was. Yes, it was a painful as it sounds!! It turns out, I have damaged a major nerve at the back of my knee, which wraps round the side of my knee. The whole thing is badly inflamed. Apparently the nerve at the back of the knee splits into two, there is the siatic nerve, and the other one, which I cannot remember the name of! Once this was diagnosed, my lovely physio-terrorist (sorry, therapist) was able to give me advice. Advice so good, it has already helped improve my knee by decreasing the number of times it collapses, reducing the resulting spasm and increased pain. Anyone with chronic pain, or severe disability or both, will tell you things often go in a vicious cycle especially with spasms or pain. Breaking that cycle can be heinously difficult, but once you do, it can make an enormous difference. P.S. For anyone who would like to read more about the causes and effects of pain, see Health Activist, Mrs. Rants excellent blog. ————————————————————————————————————————–

I wrote the majority of the above last Wednesday, but had no time to publish the post. I am finishing this in the early hours of Monday morning, a day and a bit after early 30th birthday celebrations. My lovely friend who organised the bash asked my Dad to say a few words. I admit to having moist eyes! I may write another post explaining a little of what my Dad said that night, but he also referred to my blogging skills when listing some of the things I am now filling my life with. Apparently, I am a “Master Blogger”!! I am well and truly back. For your amusement, I have included a photograph of me at my party, which the lovely Bryony took of me.

The photo shows me at my 30th Birthday party.
I am wearing a black sash which says “Birthday Princess”, and I have a large pink badge pinned to my jacket which says “I’m thirty, pour me another”, with a picture of a wine or cocktail glass on it! I have a big smile on my face. I didn’t realise until I saw this photo that I am sat underneath one of the ceiling lights, so it looks like I have a halo above my head!!