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Smoke And Mirrors

Smoke and Mirrors

Smoke And Mirrors

For the Wex Mondays and Fotospeed challenges this week I have created another of my little still-life squares. I added a bit of smoke to the mirror using my vape but I must say it was harder to try and control than I thought it would be! I stacked nine images together so that I could get the smoke in all the areas that I’d wanted. I kept it soft like a sea mist. These little pieces are very self-reflective. There are many times that I feel like an empty shell, a pale reflection of the person I should have become. I can put on a mask but it’s all smoke and mirrors, tricks of the light. This shell is cracked. Not fit for purpose! Even a hermit crab wouldn’t want it. Half a life of Crohn’s will do that! It’s IBD awareness week with the theme Make The Invisible Visible (Crohn’s and Colitis) so this is a way of sharing something of the impact that the disease has had on me. I think if I took off that mask and lived showing people how I really felt all the time it would absolutely destroy me. I’m a rather fragile shell really. The mask is as much for myself as for anyone else. But still, there’s beauty even in an old, cracked and empty shell.

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Weekly Photo Challenge: Water’s Edge

Feeding The Birds

Weekly Photo Challenge: Water’s Edge

Preparing To Swim The Serpentine

This coming Saturday 24th September I will be stepping off the edge into the waters of the Serpentine Lake in Hyde Park, London, as part of the Swim Serpentine event, raising money for my charity Crohn’s and Colitis UK (CCUK). Swimming is the only sporting activity that I can do since the worsening of my Crohn’s and the onset of fibromyalgia. I love open water swimming and joined Thorpe Open Water Swimming club this summer for my own enjoyment as well as training for the charity swim. I actually feel so much more like myself when I get my wetsuit on and jump into the lake! I can move so much more freely and really get some active exercise going that helps prevent the fibromyalgia from worsening. There’s only one more week left of the open water season and I know I will feel lost without it during the winter. I don’t swim much in pools as the chemicals in them can really aggravate the skin conditions associated with my Crohn’s!

Swim Serpentine Course Map

I am so excited to be able to swim around the entire Serpentine! Hyde Park and the lake are a sanctuary for people and wildlife in the heart of London. I have visited a number of times to photograph the wildlife and landscapes but now I have a chance to see it all from a different perspective. If only I could take my camera into the water! I thought I would create a few albums to show you all some of the beautiful sights around the park and lake. I hope you enjoy them and perhaps you will be inspired to SPONSOR ME! CCUK is a small charity compared to many that will be represented on the day and we really need your help. I’m also taking part in the formation of a research project into perianal Crohn’s Disease at the moment. It’s a great feeling to be able to be part of something that could really improve the care and quality of life for many patients in the future! CCUK is involved is a huge amount of research as well as giving support to patients and their families. All research projects take many years of work and can cost an awful lot of money. They are absolutely vital in furthering our understanding of the causes of these complex illnesses and finding better medical and surgical treatments for the future. There is no cure. We would like to find one! If you can’t sponsor me yourself I would be grateful if you would share this request for help with others. Thank you all!

Hyde Park Wildlife

Scenes around Hyde Park and The Serpentine

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Every Day Is Different: Day 5

Strength and Vulnerability

Every Day Is Different: Day 5

Butterfly

Handle them with care
So strong yet vulnerable
Delight in their flight

Shelter them from cold
Watch out for them as the sun
Warms their wings again

Dance with them in Spring
As you’ve never danced before
Celebrate sweet life

Every Day Is Different

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Every Day Is Different: Day 4

Hazel O'Connor

Every Day Is Different: Day 4

Every Day Is Different

Today didn’t start very well but it certainly ended on a high note! I was up less little more than an hour before having to take myself straight back to bed. I remembered to set an an alarm as I had an important date to make this evening! Having got up for the second time, I threw on some clothes, fed the cats and rushed off to get the train up to London to meet Simon and our friend Julia. Our destination was the beautiful Union Chapel venue in Islington for a 35th Anniversary screening of the film Breaking Glass.

Hazel and her band receiving applause

This was followed by a Q&A with Hazel O’Connor, a performance with her band, Sarah Fisher and Clare Hirst, who were then joined by a full choir in front of an audience that really was packed to the rafters! I was able to copy a couple of images from my camera onto my phone to process on the train returning home. The rest of my photos today were taken on the phone, including a lovely one of me and Simon that Julia kindly took for us! Lots of interesting purples for #PurpleFriday including Heather’s dress 🙂

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Every Day Is Different: Day 3

Chrysanthemum Explosion

Every Day Is Different: Day 3

#EveryDayIsDifferent #7daysofIBD #crohnscolitis

I thought you’d all like these wonderfully different chrysanthemums to mark the third day of Crohn’s and Colitis Awareness Week. Purple is the themed colour for IBD awareness and I’m having fun with my purple blooms. These ones always make me think of a big, colourful firework exploding! I really enjoy the way those petals start drooping as the flower starts to die back. Such interesting shapes 🙂

Every Day Is Different

Today I had a chat with a friend in Vienna who also has IBD. Messenger is a great way to keep in touch! Dani and I met over fifteen years ago. We were representing our country’s IBD Charities at European conferences for young adults with the disease. I helped organise one of these meetings here in London in 2000 and attended others in Amsterdam and Stockholm. They were all fun, informative and rewarding meetings. I’d never been to Sweden before and absolutely loved Stockholm itself!

My ears are improving with the antibiotics now and I have been less fatigued and more productive. Today was a good day 🙂 I’m hoping my energy levels will stay raised for the next few busy days! I may have to take naps between events but I am absolutely determined to have fun and get some new photography done too.

 

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Every Day Is Different: Day 1

Chrysanthemum

Every Day Is Different: Day 1

It’s Crohn’s & Colitis awareness week and this year we’re all trying to highlight that every day with chronic illness is different. I thought that I would share my life with Crohn’s alongside something that is beautifully different! Today it’s a chrysanthemum, a favourite flower of mine to gaze upon, photograph and create artwork with.

 

Today I woke up feeling awful from a night of sweats, cramps and night mares. That’s usual for me though! I also woke up with another day of horrible earache. I take medication that reduces my immune system in order to treat the Crohn’s, which is an auto-immune disease. This means that I get a lot of infections but I refuse to let it deter me from getting out and about.

Fatigue

This is the state I was in with my fatigue!

I set an alarm for 8.29am so I could try, for the second day in a row, to get an emergency appointment at the doctors. Yesterday was an epic fail as I slept through my alarm and by the time I contacted the doctors there were no appointments left! I tried and tried to get through today and all I got for about seven minutes or more was the busy tone. Then I fell asleep with the phone still in my hand and no appointment! That happens a lot to me as I have such bad fatigue and my nights are anything but restful.

CCUK

My care assistant came to help me get up, washed, medicated and dressed at 11am and by the time we had finished and I finally got through to the doctors – no appointments! I tried pleading, telling the receptionist that I’m immune compromised and explaining my difficulties in the morning (I have lost count of the number of times I have had to repeat this conversation). She just kept telling me that I had to phone at 8.30am and everyone else was in the same boat as me. I asked her to check with my GP and she said that she’d already asked her administration manager and there was nothing they could do. I broke down in tears. An infection can get really out of control with me if I don’t get treatment quickly. I felt so stupid, it’s just earache after all! But it really hurts 😦

My hubby, Simon, called me on his lunch break (he always does, lovely man) and was utterly dismayed that I still couldn’t get an appointment. Bless him, he got straight onto the phone to the doctors and had a discussion with the receptionists about what the NHS says about their duty of care for patients who need to be seen (strong words but a calm head!). He discovered that only 13 emergency appointment had actually been available today! That’s not healthcare, it’s a lottery based on whose phone connects first. Anyway, to cut the story down just a bit, suddenly they CAN fit me in but it’s a one-off special favour?!?

Every Day Is Different

I was seen by one of the doctors that I really like at 5pm who confirmed that I do have quite an infection, possibly inner and outer ear from how red and inflamed they were. So finally I have the antibiotics I need, a soothing ear spray and the relief that I will feel better soon. My hubby, my hero, thank you so much for backing me up and always being here for me!

Ornamental Chrysanthemum

Different Is Beautiful Too!

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Purple Friday

#PurpleFriday

Purple Friday – Part of Worldwide Crohn’s and Colitis Awareness Week

For any of my followers who don’t already know, I have Crohn’s. I was diagnosed nearly twenty years ago and have since undergone four major abdominal operations including having an ileostomy created; developed secondary Fibromyalgia, psoriasis, vulvodynia, ocular disease, dental disease, kidney stones, foliculitis, skin ulcers, allergies, abscesses, strictures, hair thinning and reflux; I’ve had countless colonoscopies, ileoscopies, barium meal x-rays, transfusions and blood tests; I’ve taken pretty much every medication ever used in Crohn’s, plus several more experimental treatments; I am now taking Azathioprine and Humira (adalimumab) injections which reduce my immune system, along with numerous other medications for symptoms of all my conditions and to counteract side-effects. I have a GREAT life; brilliant family and friends, two lovely cats, art and photography, poetry, music, travel, the great outdoors, the RHS, lots of children who aren’t mine but I love them all to bits, oh, AND next year I’m getting married to my wonderful man, Simon 🙂

For #PurpleFriday, patients, their families and friends have all been wearing purple and taking selfies to tell their stories and raise awareness of Crohn’s and Colitis all over the world. Instead of a selfie, I decided that sharing some of my favourite purple floral-photos was a much better way of telling people about myself. After all, Crohn’s is only part of my story! It’s also a great way for me to say thank to Crohn’s & Colitis UK (CCUK) for all they have done for me over the years and to send a big hug out to everyone around the world affected by these illnesses.

This is a gallery of posters shared by CCUK this week to raise awareness, please feel free to share them!

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Travel Theme: Broken

Self Portrait in Hospital

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.

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Weekly Photo Challenge: Threshold

Weekly Photo Challenge: Threshold

Weekly Photo Challenge: Threshold

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.