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ShareTwoMondays2020 – Taking Terns

 

ShareTwoMondays2020 – Taking Terns

I short-changed you all last week, many apologies! So today you get two weeks worth of news and images. Above is my entry from last week, a composite of a common tern in flight over Heron Pond in Bushy Park. My entry this week is this female juvenile stonechat, in the brambles, at Papercourt Meadows. Such precious wildlife encounters, during challenging times, have been incredibly uplifting!

Female juvenile stonechat

I had two appointments with hospital consultants the week before last! The first was a long-awaited follow-up with my specialist gastroenterologists from St Mark’s Hospital. Simon drove us all the way up to Northwick Park hospitals, where St Mark’s is based, only to find that their off-site admin had sent out the wrong letters! It was a phone appointment. I had it with the senior registrar on the journey home lol! He was great, very comprehensive with his explanations on what is actually going on with my guts, and gave me clear information on the possible treatment plans. It was a long call! Almost an hour in the end and bless Simon, he took me straight to Heather Farm on the way home so I could process everything!

There were so many gatekeeper butterflies! Such a joy to see them. I really identify with the butterflies that I have always loved so much. Their resilience just astounds me! Such delicate and vulnerable creatures, but there is so much strength in them. Many species have very specific habitat requirements. The right food sources for adults combined with the right food sources for larvae. My own diet has been getting more and more restricted over the last few years.

I had an MRI and an ileoscopy (camera into the small bowel through my stoma) just before we went into lockdown. I have two areas where the bowel is narrowed from adhesions (scar tissue) and this causes “hold up” or obstructive problems. Food can’t pass through easily and causes distension, or bulging, of the bowel just behind these obstructed areas. Yes, it is rather painful! I’ve been managing it by cutting out more fibrous and indigestible matter from my diet. The part they’re most concerned about is the section leading to the stoma. Where the bowel is passed through the abdominal muscles and wall, it has become tortuous, like a really bendy road, stuck together with scar tissue, and part has prolapsed through the abdominal wall itself. No wonder it’s become so painful and I have been having more frequent partial obstructions!

There are two possible surgical options. Both are less invasive than the full open abdominal surgery I have had before but they will require a bit of time in hospital and recovery. It could be a while before I actually get to see the surgeons, as they’ve only just been able to start doing planned surgery again, and outpatient appointments are still mostly over the phone. Many patients who attend St Mark’s are immunocompromised like myself and will have been shielding. Even my consultant has been shielding! Getting services running again is a huge challenge for them, especially as Northwick Park Hospital was at the forefront of treating Covid patients in London from the outset of the pandemic. I have so much admiration for them all!

Flying ants

Flying ants emerging and climbing to the top of grasses to take flight and form new colonies.

We all face personal challenges in our lives, and at times like this, it can feel even more like a scramble to get the help that is needed to move forward. That might be getting financial assistance due to work loss from Covid disruption, getting an urgent surgery rescheduled, trying to get back to work safely as a shielded individual, or getting your education back on track after the disruption. The one constant in life is change! In many ways I feel that I was better prepared for the difficulties we have faced this year because of my experiences of living with chronic illness. When I watch nature and wildlife I am constantly reminded that we are not alone in facing change and challenge! Watching the newly fertile flying ants emerging from the ground, struggling up grasses and scrub to take flight and form a new colony was a real privilege. This is life, it is fleeting and in constant flux. It is wondrous, precious, strong and vulnerable.

Common Tern

Common Tern at Bushy Park

On the last day of July I had a more simple appointment with the dental surgeons at Guy’s Hospital. A quick check to ensure everything had healed well and I have been discharged! I will likely have to see them again in the future but the hope is that all the measures that have been taken, along with my special dentures, will delay the loss of other teeth as long as possible. Incredible to think that all the decay and loss of teeth stems from dry mouth! I only have four of my own upper teeth remaining. Our saliva is a natural defence against many types of harmful bacteria and fungi that inhabit our mouths. By the time the oral medicine team at Guy’s Hospital had seen me and diagnosed the condition, so much damage had already been done. All the specialist teams at Guy’s Dental hospital have done everything they can to treat my condition and help me manage my dental care to protect my remaining teeth. I can’t have dental implants sadly, as my bone density was impaired by years of steroid medication and my infection risk is very high from the current immune suppression therapies. The worst part of that appointment was the drive in and out of London! I have been advised not to use public transport still because of my extreme risk factors. That day was the hottest of the year, almost 38 degrees in London! The journey is about 30 miles but took two hours. I headed to Bushy Park on my way home for some fresher air and just to wind down a bit!

It did me the power of good! A breeze had started up and the wildlife was getting more active as temperatures finally dropped off a bit. It was late afternoon by the time I got there and so the park wasn’t too busy. It’s always a joy to watch the smaller birds flitting about in the bracken! Reed bunting, wrens, blue and great tits and stonechats all made brief appearances. There were lots of gatekeeper butterflies and the red-eyed damselflies were a real treat to see! I hadn’t expected to still see any terns around the pond so the sight of one adult tern circling and skimming the water to drink, was wonderful. I could have happily watched this incredibly acrobatic flier until the sun set! Capturing a series in flight, using burst mode shooting and continuous focussing, allowed me to put together the composite showing the tern making a turn in front of me. I was really thrilled with the response to the image in the weekly competitions on Twitter! Making shortlists is always a real bonus.

Long-tailed Tit

Long-tailed tit in an oak tree at Papercourt Meadows

Of course I am far from the only person dealing with physical or mental health difficulties at the moment! I’m sharing so much about my health in this blog, partly to update people on what’s going on with me, but also to let others in a similar position know that they are not alone. Over the last few months many of my family members and dearest friends have been battling ill health. Some of them have been in and out of hospital during the pandemic and I want to thank the NHS for keeping them safe and looking after them well, despite the difficulties they have been facing. The very hardest thing for us as family and friends, is the inability to be with our loved ones. It brought home the plight of the families of those who have sadly passed away from Covid 19 in hospital. My heart goes out to you all!

I was able to watch a beautiful family of stonechats at Papercourt Meadows last Wednesday, after having my routine blood test done. It was the first time I have been back into our local health centre! All my doctors appointments have been via phone and video, and nurses had been sent out to me to do blood tests while shielding kept us indoors. I think they’ve got everything set up well to keep patients and staff as safe as possible. It was very breezy at the meadows which I really enjoyed with the heat we’ve had! The stonechats had four juveniles who are starting to feed themselves but still getting a number of extra feeds from their parents. It was lovely watching them busily flitting from the hawthorn to the brambles, perching on the fenceposts and the tops of scrub in the tall grasses. It probably wasn’t the best conditions for macro (too windy!) but I did find a fabulous crab spider on a dog rose near the river bank!

Crab spider on dog rose

I have always loved being by the water, and Papercourt Meadows are bordered by both the River Wey and the Wey Navigation canal. It makes it a rich habitat for a real variety of plants and invertebrates. That brings in lots of birds, small mammals and some fabulous birds of prey too. The kestrel was out hunting but she was far too distant to photograph. Still, it’s such a thrill to watch them hover and then dive down into the grasses! I haven’t caught sight of the barn owls at all and I have to wonder if the extreme weather conditions this year have affected the numbers of voles present in the meadows. Just before we went into lockdown, the meadows were flooded. It was absolutely inaccessible even in wellies or waders! Since the heat of May, the ground of the meadows has dried out and become rock solid in areas that would usually still be boggy. Not great conditions for any small burrowing mammals that are the key prey species of barn owls!

Invertebrates are doing pretty well at the meadows. I really enjoyed finding banded demoiselle and common blue butterflies in the grasses and reeds along the river bank! The sunlight was picking up the iridescent colours on these little beauties. A perfect end to a glorious day by the river! Whatever challenges I am facing in life, I always manage to find peace and joy in the simple pleasure of watching wildlife. Good field-craft includes being still and quiet, which I find very meditative. Listening to the soft sounds of flowing river water, the rustle of leaves in the trees, the whisper of grasses in the breeze and the chatter and trill of birdsong. Every environment has it’s own soundtrack and it’s lovely to just get lost in it for a while. I hope everyone can find their own spaces of peace and tranquillity, to be still and mindful, to let a bit of nature into your soul.

 

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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.