Today is a view of the more hidden side effects of CRPS, and also knock on effects of a compliment, while finishing with a picture gallery of my day at Rutland Water.
Featured Image – Random Graffiti on the bench we sat near today. In the UK all benches are usually placed with a tribute to friends and loved ones lost, a habit I got from a friend was to go and “sit on that person’s knee” I now like to also thank the person when I sit down. I don’t mind graffiti, it’s a form of expression as long as it’s not disrespectful, and this piece in particular seemed quite philosophical. It was like the persons memory in the bench had a final message to share.
Title Song – The The – This Is The Day – My parents used to have Soul Mining playing in the house and I love every track on that piece of magic of an album. This particular song always makes me happy, mostly because of its use in the film ‘Empire Records’. I find it impossible not to smile at its fantastic optimism and it has such a beautiful flow.
The things we don’t mention that come with the pain and I think most chronic illness sufferers would face. These are the things that can get us down. Excuse some graphic descriptions:
- The itching – so many different theories on why. But god sometimes I want to tear my skin off.
- The sweating – dealing with drowning in sweat can be so awkward and embarrassing.
- The urinating – Pain killers seem to have made the bladder a similar size to a pea
- The IBS – cutting out foods you like because your body decides it doesn’t want them any more. this includes the diarrhea, the sickness and the sometimes loss of control of bladder and bowels.
- The human reaction – Coughing sneezing and hiccups are torture for myself especially as any jolt to my neck just amplifies pain
- The migraines – dark room. Slight breeze. Cold towel. Under the quilt. No sound. Maybe a bucket. Agony.
- The brain fog – forgetting, blanking on memories, thoughts. it feels horrible to forget yourself
- The fear – of accepting help, asking for help, being alone, being crowded. We may have exteriors of relative calm sometimes, but the pain is constant and that can make you over think everything sometimes in just an attempt to quiet the chaos.
- The melancholy – this isn’t exactly a side effect written on the little list of 100 bad things your tablets can do to you. However it is very real. The smallest thing can throw me off kilter and leave me spiraling into negativity and consequently more pain. To say that I am high maintenance physically and emotionally would be very much an understatement.
- The body – it isn’t being used to its fullest, it is deteriorating. Stretch marks, scars, thinning skin, these are just part of getting old, but when it begins to happen in your late 20’s you begin to become very self-conscious in your own skin.
- The bleeding – oh god, the stretch marks leak, the bed sores leak, the gums get tender, the bowels bleed if you eat something vaguely disagreeable.
I know there is plenty more and I’m sure other people going through chronic illness will be able to trigger my memory with the things we keep to ourselves. Honestly there is so many things, it becomes overwhelming to think about. I don’t say lightly that every single aspect of life with chronic illness is harder. For me specifically, I have moments where I literally cannot breath properly because of the pain in my right hand side. That is sort of the fundamental part of being able to function. I wish I could replicate the idea of the ice bucket challenge for CRPS to explain what it is like to other people. But I honestly don’t think the flaming barbwire challenge would be quite so eagerly attempted.
I spend so much of my life, either explaining my illness, or sitting there consciously not talking about it to not be a burden. I try so hard to just live and not be defined by it. I need to be prouder of my disability and become more comfortable, but that takes other people too….which leads me nicely on to.
A Moment Of Kindness
Such a simple act, a gesture of thanks that came with a compliment. I have received compliments on my writing and my attitude and my courage. It has been a long time since I have received a physical or aesthetic compliment. Yesterday Luz’s sister Emma, simply told me my beard smelled nice.
Nothing much for most. But for someone who is nervous around people, someone who is very self conscious and lacking in social confidence, It was like an explosion of happiness for me. I had recently got a new Lush beard wash, I have so many beard oils and nice softeners, that and my hair are two parts of myself I take real pride in. Honestly if I was able to use my right hand I would totally wear make up. I can’t do much to cheer myself up as easily as just some simple self grooming. So to have that recognised was a real buzz. I was flagging physically too, so the compliment was just what I needed to give me a pick up.
It showed how easily and simply we can make an impact on another persons day. So share some extra love, be kind to someone, help a stranger, or just share a compliment. You could make someone else go from having a tough day to help them focus on the happiness and positive.
So we live maybe 2 minute drive from this beautiful location, yet I can count on my hand how many times we have been this year. Luz said yesterday that we just need to get ourselves together and go sit up there more often.
Yesterday it was made extra beautiful by the celebration of ‘ birthday, which for me was brilliant because it brings all the family together and talking and happy. They are all so relaxed with each other it’s really nice to see. It’s not even the new generation of children either. The four sisters all together is something really nice to see. I love family interaction, it’s so unconditional and genuine.
So I thought I would share some of my days pictures:
It’s important to note that before we all met up, Emma, Carole, Violet and Poppy had been to Nottingham to a Kitty Cafe – yes a cafe full of kittens! Will definitely be going there sometime for a happy day!
Here is my smile to share, post compliment, feeling good about my beautiful smelling beard, and having had a lovely afternoon outside with sun, fresh air, family and love.
Then to come home to these guys:
A night relaxing and saving spoons was spent watching the dullest football match, and catching up on the world of social media. which by the way i must admit to my newest addiction:
Oh snapchat, I thought you were so silly, and you are, but such good fun! We spend so much of our time hating on what other people find fun, we forget to try them and see what they enjoy. I am definitely someone who forms an opinion of something that is easily smashed when I try it. Sometimes we just need to have a bit more fun. so feel free to add me as id say im addicted! Also there is something that appeals to me about providing stories in a more digestable media form. People do have short attention spans so It can be easier to explain if you adapt to the most convenient format.
This is The Day
So todays song, as mentioned in the blurb at the top is very dear to me, I truly cannot recommend the album soul mining enough, also if you havent watched the film Empire Records I definitely would suggest finding some time to sit down and enjoy it. For me Empire Records and High Fidelity were very personal coming of ages stories that resonated a lot, Empire Records was definitely my college days. This song however is the soundtrack to my childhood and continuing on. It is such a brilliant blend of relaxing and cheerful. It’s a beautiful track to sit with headphones in, basking in the sun on a relaxing evening. Enjoy.
Bonus here is the final rooftop scene from Empire Records with the music playing us out