#FeelGoodPhotoOfTheDay – Frazzled
Neurons are frazzled
Relentless pain transmission
Travel Theme: Broken
Well that’ll be me then! This post comes as a way of explaining my late responses to you all for comments on my posts over the last week or so. Both my immune and nervous systems are well and truly broken resulting in Crohn’s and Fibromyalgia. My consultants and I do everything we can to stabilise my conditions and I have a lot of support, especially from my wonderful Simon, to enable me to have as full a life as I can. I think you all know that I get a lot of joy and happiness out of life and I make the very best of the good days. This might be wordy so I’ll break it up with some pretty pictures! They were taken on my phone in the beautiful and quirky Igloo Flowers shop in an old Victorian Arch in the underpass that leads from Guy’s Hospital to London Bridge Underground station. I’d like to dedicate these flowers to all my fellow bloggers with chronic and life limiting illnesses like mine. You know who you are!
Sometimes things can go rather wrong for me. They certainly did last week! My teeth are in a bad way because of the Crohn’s and I’m seeing dentists at Guy’s Hospital in London now. On Tuesday one of my molars had to be removed as it’s been badly broken for a long time and I’ve been getting persistent infections. We still don’t know exactly what went so wrong but it’s suspected that the very large amount of local anaesthetic that I was given, alongside the severity of the infection, sparked off a really bad Fibromyalgia attack.
It hit me full on, without any warning, while mum and I were on the train heading home. I know I scared mum and I probably freaked out the other passengers too! It’s probably a bit like watching someone having a fit. Uncontrollable shakes, extreme sweating, complete weakness and horrific pain everywhere. To my shame and horror I had to be lifted off the train at my home station, by paramedics, before being rushed into my second hospital of the day. I do apologise to passengers on the 16:55 from Waterloo last Tuesday for having delayed the train! I just hope nobody missed any connections at Woking.
It was close to midnight before I was allowed home with Simon. The following day I still felt like I’d been in a car crash and my local GP prescribed some extra antibiotics as I still had a very high temperature. I so wish that that was the end of the sorry tale but by Friday my face was complete agony! My local dentist confirmed that the infection had spread through my upper and lower jaw and added in a third antibiotic, called Metronidazole, and codeine to take between doses of tramadol. Yes, shake me, I rattle!
I’m still in a lot of pain but I’m finally on the mend from at least this particular episode! The hospital will probably have to put me out before removing any more broken teeth. I’m not going through all that again I can tell you! My main image above is actually a self-portrait that I did in St Marks Hospital (a specialist bowel centre) the night before my fourth major abdominal surgery, three and a half years ago. I wasn’t sure if I’d ever share it but it certainly fits this week’s theme. The main thing is that I accept that I’m a bit broken, vulnerable and I do need a lot of help, but I’m certainly not useless.
I found a lot of strength in accepting my vulnerability. There’s no point in recriminations, regrets, guilt or anger. Life’s far too short for that and there’s so much to enjoy when you can. The help I get from my loved ones, friends and care workers enables me to do so much more than I’d be able to otherwise. I like to celebrate all the things I love in life through my photography and poetry, that you all enjoy what I do is a real confirmation that what I am able to do matters, that I matter.
Threshold: Also called limen. Psychology, Physiology . the point at which a stimulus is of sufficient intensity to begin to produce an effect: the threshold of consciousness; a low threshold of pain.
People often speak about having either a low or high pain threshold. I think that’s a difficult thing to quantify! My own threshold is the point at which it becomes unbearable, the point at which I break.
I’m often told that I’m brave. I don’t really feel it! Chronic illness doesn’t give you many choices. You just have to make the best of a bad situation, to find and hold onto the good and beautiful things in life.
Some years ago I made a series of self portraits when I was in a lot of pain, both physical and emotional. My Crohn’s disease had recently spread and was causing a very rare set of symptoms. I was in such agony and was having real difficulty in getting the right medical support and treatment.
It’s taken five years to finally get the complete diagnosis and a treatment plan that keeps the symptoms somewhat under control. I have Ano-genital Crohn’s with secondary psoriasis. There are only thirty cases, that know of, being treated by the specialist hospitals in London and the South East. At times I feel very isolated.
My pain threshold has been breached on far too many occasions! Thankfully the latest steroid cream has kept the wounds at a minimum and it’s been about sixth months since I last had to use any morphine.
All this is in addition to my general levels of pain from Crohn’s and Fibromyalgia. Every day feels like I’ve just been in a car crash! I couldn’t really tell you how I cope, I just don’t have any other choice.
So I just wanted to say to people that everyone has a breaking point! No one should feel like they have to put on a brave face all the time. It’s not a competition as to who can hold out the longest. If you know someone with chronic illness, let them be vulnerable, accept that their pain is real and sometimes uncontrollable. Just be there for them when you can.
After our adventures in Shropshire, I’ve been exhausted today!
Chronic fatigue has not completely beaten me though, in fact it inspired me to create an image representing just how hard it is to keep your eyes open when your lids feel like heavy weights and your vision is blurred.
When you’re unwell, do you allow others to take care of you, or do you prefer to soldier on alone? What does it take for you to ask for help?
Photographers, artists, poets: show us HELP.
Funny this prompt should come up today when I’ve been really wiped out by my fatigue! Well, I get by with a little help…….
From my medications,
From my doctors,
From my pharmacists,
From my Careousel,
From my carers,
From my photography,
From the arts,
From my family
(And not forgetting)
From my friends!
I won’t lie to you, today I have been exhausted!
I am very lucky to have a wonderful man in my life who looks after me and does lovely, little things just to make me smile when I’ve had a rough day 🙂
His Chicken Pie tonight was almost waving hello to me, inviting me to dive in and eat my fill.
I did, it was yummy 🙂
The downside of having had a really good, busy weekend is that today I can’t function very well at all!
I won’t be totally defeated though, on any day, no matter how sore and tired I am.
To paraphrase a well known saying – The blog must go on!
Hope you all like today’s little offering. Have a good week everyone!
I really wish I had a built in one of these buttons that I was in control of!
Unfortunately mine appears to be controlled by nasty little imps and goblins living in my nervous system and T cells.
Little monsters put me on standby for the entirety of today! I was not impressed.
I must try to find a devious distraction in order to prevent them from interfering with my weekend!
It’s actually pretty embarrassing when one of the little blighters decides to switch me off in the middle of the day, particularly if I have company!
And when it comes to doing a manual shut down tonight the ones on the night-shift will keep re-starting me, just for the fun of it! Theirs, not mine.
One of the reasons I called this blog “Taking One Day At A Time” is that that is often how I have to live my life. I hoped my photography could provide an insight into living with chronic illness. I work hard to overcome the worst aspects of my conditions by finding joy in life amongst all the wonderful things around me.
Sometimes, though, aspects of either my Crohn’s or Fibromyalgia catch up with me and cannot be ignored. Today an aspect of the Crohn’s, Surface Ocular Disease, has flared up keeping me housebound as well as in discomfort.
I can’t wave a magic wand to make it go away but by photographing my eyes I was then able to do in Photoshop what I wish for in real life. I magicked away the red, burning, tearing, irritated and inflamed sclera.
There is no magic cure for my ailments though. I really hope that my doctors can help me to get this flare up under control again. I won’t let it keep me from my photography or all the other things I love in life for too long!
I will have to balance my work with resting my eyes for a bit but I am very determined to keep up my blog.
If you want to know more about Crohn’s or colitis please visit Crohn’s & Colitis UK at http://www.nacc.org.uk
For information on Fibromyalgia please visit Arthritis UK http://www.arthritisresearchuk.org/arthritis-information/conditions/fibromyalgia.aspx
Also feel free to ask me anything about how these illnesses affect me
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