The body does keep the score

Goodness, it’s been so long since I last wrote a blog post. The last 18 months have been good, and my kidney is doing well. However, the health anxiety and generalized anxiety did not abate. I could not understand this and was frustrated by it. My health was better. So, I wanted to get out into the world and reclaim some of the things lost to me. But, as I’ve found out the body keeps the score, and all that trauma is not forgotten. Reading and listening to podcasts about trauma and taking steps to look after my mental health has helped me to understand why my body could not get itself out of the fight or flight response. I’ve become more compassionate with myself and am trying to accept that I will be left with this anxiety, but it will become less with time.

Photography as always, has been a positive outlet, and getting out in nature with my camera makes me feel better. My nervous system calms, and I’m in the moment, which is so good for me – as I often can’t feel the moment. My adrenaline courses through my body, panic sets in, and I’m busy trying to work out how to get out of the situation I’m in (however benign). First happening at the hospital and the doctors, it then happened at the cinema, theatre, and restaurants. Various strategies are helping me manage this, and I think going forward I’ll just have to expose myself to these situations. But reassure my body that it is fine, and safe, use tracking techniques and distract my amygdala! At first, I thought I should be just able to talk my brain down. But I now know that once this fight or flight sets in, you can’t reason with it – my brain perceives a threat and wants to get me away. By tracking, I should be able to calm my brain before the stress hormones flood the body. Yet again, I am on a journey of learning. I can’t fight it or wish it away. My brain has looked after me through the darkest of times, now I have to return the favour.

A few of my recent submissions to Arcangel

Progress – I am getting better

In May it will be two years since my transplant. My transplant has been successful and incredible and it has allowed me to live again, rather than exist. I no longer need a machine to keep me alive.

My body sustained considerable trauma, though. The transplanted kidney has helped my body to heal, but I am not completely healed. The 12 scars that litter my stomach and neck are a constant reminder that I have been in many battles. Apart from the scars, it is the nerve damage and subsequent pains and strange sensations that are still with me every day. Though, the pain has lessened, and considerably so. At the peak of the pain, I felt like I was constantly being given electric shocks, or being stabbed by a sharp implement. For a few months, there was no let-up. If I got three hours of sleep in a night, that was a good night.

Before dialysis the pain was so intense that walking became difficult. So I started walking with a stick, then crutches and then I needed a wheelchair. The result of all this was that my feet had lots of muscle atrophy and the damage meant I could barely feel my feet. I knew the phrase ‘use it or lose it,’ so I tried every day to put my foot on the floor, and it was agony. I lost almost all sensation in my right foot. So much so that it did not feel like it was my foot anymore. At the time, I thought my brain had disconnected from my foot because of the intense pain. But my friend gave me a book called ‘Livewired‘, which is about how the brain adapts to its experience, its environment, and creates a new normal. I realized that my brain had disconnected from my foot because it could not feel it anymore. So, for all intents and purposes (at least according to my brain), my foot was no longer there.

After the transplant, Covid put my recovery on the back burner. So I decided I had to work out what to do myself. Thank goodness for YouTube and the physiotherapist’s Bob and Brad (I love you!) My cousin Helen, has also been a great help. She is a therapist, and I have been going to her for reflexology since the transplant. I could see no one else (physio wise) so my transplant team allowed me to see Helen as long as she was in full PPE. They were also happy because she was working on my feet. Though I’m tiny, so there was certainly no social distancing! After the first session, I got off the bed and I could feel my feet. Amazing, it was wonderful. It did not last long, but I shall never forget it. The problem when you can’t feel your feet is that you stumble: you catch your toes where the foot has dropped. It meant my walking was painfully slow. I had to lift my foot with each step, (as does everyone) but it was a conscious thought. It is surprising how tiring it is when something so innate becomes unlearnt.

I could not drive. I still can’t. When I push down with the ball of my foot, I get a searing pain. As well as all the muscle atrophy, I lost the fat pads in my feet – which meant I lost my cushioning. My bone protrudes, and it pushes down on damaged nerves.

My independence was lost. I wanted to drive, but I knew I would be a danger. Before I stopped driving – before the cushioning had completely gone, I was driving Darren home when the pain struck and I could not put my foot on the pedal. I had to pull over. It frightened me. As things got better, I wanted to see if I could push down on a pedal again. I thought trying the yoga position The downward dog (as you put your weight fully down on the balls of your feet and hold it) would be a great test. After doing that exercise for about a minute, I could not walk for a week. I still keep trying and now I hobble about for a few hours, rather than a week, so there is progress.

The exercises were painful, walking was painful, but eventually, things got easier. It was hard not to get disheartened, as the gains were so small. But, when I look back now, I realise just how far I have come. Some days were better than others. I pushed more on those days and then my foot would inflame, swell, go blue and I had no choice but to rest up and elevate it. But when my foot got better, I would be up and off again. I often wonder what would have happened if I had not kept ploughing on through.

A year after the pandemic, I finally saw a physio. It was not the ‘don’t worry – just do this and it will be all ok’ appointment that I had hoped for. Instead, the physio said I had sustained so much nerve damage that it was probably never going to get better. She thought it unlikely that I would ever drive again, and she did not give me any exercises, as she thought it would be too painful. I was pretty upset. But the physio said that she wanted to manage my expectations and not give me false hope. I understood that, but I was so deflated. She told me that the nerves had stopped talking to the muscles and if I could get my brain to connect to those nerves again, it might help. Something I could work with, at last! I could do this by using sensory stimulation, walking on grass or sand, pebbles (ouch) If my brain was aware it could feel something, it could help get the brain to rewire, and talk to the nerves again. I massaged my feet every day, and I had noticed that if I missed a day, the pain and numbness were worse. So this made sense to me and it was a positive thing to try. I saw two other feet specialists, but both couldn’t help. Although one of them said that no one could tell me that nerves couldn’t heal. I just had to persevere and realise that recoveries like mine take a long time.

I’m now 20 months post-transplant. Things are better. When I saw Helen a couple of weeks ago, she said it was the first time she could do a proper reflexology treatment. Previously, my foot would shake with pain or I would jump a mile, so she had to be very gentle. But at this latest treatment she could apply pressure. She also said my foot had some muscle tone (finally!) So my nerves have started to talk to my muscles. Helen was so happy. She has seen more than most what a struggle it has been and has always been championing me on. I could hardly contain my smiles. I could feel most of the treatment, and this had not happened before.

Something else has happened in the meantime – I’m not sure if this is because of the nerve damage or if it is unrelated. But some of my muscles are stronger than others and occasionally I no longer have control of them, particularly in my neck and hands. They have referred me back to a neurologist. But in the meantime, I have applied the same things I have learnt from my feet. I need to exercise to strengthen the muscles I have control over and hopefully, this will help connect my brain to the overworking muscles and bring back control. I’ve coped well with all the kidney dramas over the years. But this has been hard. I don’t want to see people I don’t know, and I dread going out and sitting for long periods as the tremors start and I cannot stop them. Covid has added to anxiety on top of this, so I know I’m not the person I should have been two years after my transplant. I’m trying to get back to that happy-go-lucky girl, but I feel I may have more work to do before that happens. Writing helps – once it’s on the page, it does not feel like it’s filling my mind and I suppose it helps me to let go of it.

So, lots to reflect on, I realise that the only way forward is to keep going, keep putting one foot in front of the other. The brain is amazing and if you help it, your brain will help you. I’m not sure how much better my foot can get. I’m not sure fat pads can come back once they’ve gone. But who knows? Doctors talk so much in absolutes, I try to remember to take it with a pinch of salt. I have been told so many things over the years that the doctor says as gospel, but they turn out to be wrong. I just have to keep taking those steps forward and we shall see what another year of recovery and exercise bring.

Celebrate the wins. I learnt this so long ago, but I still have to remind myself. For so long, my walking was so slow, everyone would go around me. I would always think please don’t be an old person, please don’t be an old person (it nearly always was!) But now I am finally walking faster and stronger and I’m happy to say that old people are not charging past me.

PHOTOGRAPHY

I had a wonderful year photography wise. We were able to go and explore and saw many sunsets and a few sunrises. Here are a few of my favourite images.

Photographing landscapes; and the healing power of landscape photography

In July, we went to North Wales for a landscape photography trip. The trip was important to me for many reasons. I went to Bangor University, and I loved my time up there, really feeling like I had found my home. I had not been back to Bangor for ten years due to ill-health – so a trip was long overdue. North Wales has the most beautiful landscapes, seemingly a vista around every corner – so it is a must for landscape photographers. Also, I knew it would be challenging physically. I wanted to prove to myself that I could handle the hiking, despite my painful neuropathic feet.

It was indeed challenging. But, as soon as I saw the mountains, I felt like my spirit lifted. I have recently realised that photography, in part, is a healing tool for me (no pun intended photoshop users!) Being out in nature makes me feel better. For a while, I can forget everything. The transplant has been incredible, but I have side effects from the medications. I cope with most of the side effects, but the shaking makes me so anxious, and I feel like everyone is looking at me. I am still suffering from panic attacks – my last one was at the photography show. I managed to breathe through it with my husband stroking my hand until I calmed down. The severe, at times, neuropathic symptoms have not gone either. My feet are in pain much of the time. It leaves me trapped in pain, feeling trapped in my body. Landscape photography gives me a goal. If I capture something awe-inspiring, it is such a high – suddenly that pain does not feel so acute. I am outside of myself, living in the moment. Darren is always there whilst shooting. I am glad that he sees this and can share in this less strained Vicky, for she is enjoying life.

On the first day, we went to Llyn Ogwen, it was pouring with rain, but it was so atmospheric. We pulled up in our camper van, making a cup of tea, just looking out over the lake. I took a few shots, waiting for some light to emerge – eventually, it did, but it was fleeting. As the light went, we thought it was time to go to our campsite – just down the road at Gwern Gof Isaf. A Campsite that has been operating since 1906, no-frills, but a beautiful site. We decided to take a walk to explore the area. The mountain Tryfan dominates the landscape, so we began walking towards it. I am always drawn to photographs with historical or archaeological foregrounds, particularly since shooting for book covers. Straightaway we found an enclosure – now I think it was just for the sheep (insert laughing face here). But there are so many Neolithic and Bronze age settlements in the Snowdonia national park, so I was not sure. The clouds came menacingly over the brow of Tryfan and, so with my wide-angle lens I put the enclosure in the foreground with Tryfan right behind. It is a brooding shot. The rain-filled clouds soon reached us, and it poured. Facing defeat, we went back to our camper for a hot chocolate and a good night’s sleep.

Stone enclosure in front of Tryfan

Thursday was our full day in the national park. We intended to drive to Llyn Ogwen cottage and then walk to Devil’s Kitchen. But our campsite suddenly started filling up. You do not get pitch allocation at this campsite, so if you leave your spot, you could lose your spot. So, we thought our best bet was to walk – adding 4 miles to our walking that day. As we began our journey, the weather was brutal. The rain cascaded – we knew we would be soaked all the way through, so we walked the mile or so back to our campsite and had some lunch. Fortunately, the weather can change very quickly in the mountains – and by the afternoon, it looked much more promising.

We began our walk back to the lake, taking stock shots along the way. Eventually, we reached the car park at Llyn Ogwen cottage and started our ascent to Devil’s kitchen. You can walk around the lake, and it is a relatively easy walk, but we went up. I knew this would be a challenge because of my feet, but I did not think vertigo would be the thing disabling me. I wanted to get a shot over the lake with Y Garn behind. Halfway up, I knew I could go no further. Views from this vantage point are spectacular, but I was shaking so much from vertigo. I said I could not do it – Darren had to take the photographs. But as soon as he had put the camera on the tripod, I had to take over. Vertigo ignored! By this point, nearly all the dark clouds had gone. It left the most beautiful light over Y Garn. I was so pleased to get this image – the pain just drifted away, it is such a special place to be, and I will never forget it. We made our descent, and the walk back was difficult, especially when we got back to the road and the unforgiving tarmac. I barely got a wink of sleep. But the high of that evening still clung on – the pain did not matter, my soul felt nourished.

View from Devils Kitchen over Y Garn

The next day we went to Llanberis, specifically, we went for the lonely tree. The Lonely Tree is now a famous place for photographers to go, so it was no surprise that there was a queue. The photographers talked about nd filters (neutral density). The filter limits the amount of light that gets into the sensor. I wanted to use one too so I could do a slow exposure and get the lake looking glassy and ethereal. But there was a slight breeze. One of the other photographers said: ‘I’d rather have a glassy lake and an out of focus tree’. I thought the whole point of this shot (bar the breath-taking background) is the tree. It must be in focus. So, we used a four-stop ND filter, which limited the amount of light but not overly so – the lake is not as ethereal looking as I would have liked. But the exposure was fast enough to get the tree in focus. It was a compromise, but I am happy with the shot. The stormy clouds lend drama and framing, and my portrait version of the tree was accepted at Arcangel.

The Lonely Tree, Llanberis

We spent our final day on Anglesey; our campsite was a couple of miles from the lighthouse at Llanddwyn Island. We knew that the lighthouse was another must for landscape photographers. But getting these images ended up being trickier than we had imagined. We walked from our campsite and underestimated how long the walk would be – so we got there just in time for sunset. We hurriedly set up the tripod and took as much as we could whilst we had the light. This is not how I like to photograph – I need to spend time, find the composition, and make sure the settings are all correct. I also want to explore, and I know that I missed the remains of a church on the island. Still, it was stunning, and these failings give me a reason to go back. Our underestimation was not our only failure. Llanddwyn Island is exactly that – an island, all be it only at the highest tides. As we came down to the beach, my heart stopped. The tide had come in – it was cutting us off from the mainland. Swimming was not an option. We had all our camera equipment, all our used memory cards. To lose these would be beyond devastating. We started walking to the other side, but it shelved, and it was deep very quickly. Luckily, closer to the rocks, the sea was shallower. We managed to walk across. Thankfully with only wet legs to show for it – and wonderfully – a memory card full of shots of the lighthouse, with a great sunset and glowing light.

So, our mini trip to North Wales had little adventures, lots of photographs, lessons learnt and some good fun. A trip I could only dream about whilst on dialysis. The healing power of landscape photography is indeed a tangible tool on the road to recovery. 

Tyr Mawr Lighthouse, Anglesey

Arcangel Images – Creative Stock Photography

Thingvellir national park, Iceland

I have recently signed a three-year contract to join Arcangel, a creative stock photography agency. I’m mainly interested in producing photographs that will end up on book covers, and I hope that this is a fruitful endeavour.

But, goodness has it been challenging. I have submitted 42 pictures so far and only 12 have been accepted. Rejection is difficult, but as it turns out is quite common at Arcangel. They have a high rejection rate (as they only accept the best imagery to keep their image library strong), which is no bad thing for the photographer and the industry. So, it has been back to the drawing board for me. I have listened to and watched many tutorials on luminosity masks, and adjustment layers – something I knew a little about and used but never really delved deep into this photoshop treasure trove. It has been quite enlightening and my imagery is all the better for it.

It has also been hard finding inspiration and as my portfolio is small I’m not earning any money from it. So doing a shoot with paid models is not an option for me right now. Fortunately, my niece and nephew obligingly helped me and I know I’ll be calling on my niece again – that is of course if she doesn’t mind.

Creative imagery fo4r Arcangelm images
Young girl looking out at the waters edge

Landscapes are still my passion. I just think I need to add a person into the mix as they give scale, meaning and context to the imagery I’m trying to convey. The lone figure in the picture below was (luckily for me) walking on their own. I did wonder if it was another photographer. But their presence in this rift valley can evoke so much, loneliness, isolation, fear – and as crime/mystery is one of the biggest book genres this is exactly the kind of imagery I need to be creating. I just hope the hard work will pay off and I will get some sales.

Thingvellir national park, Iceland

Archaeological Sites in the local area…

I am nine months post-transplant. I would love to say that it’s been an easy ride, that I instantly felt amazing. Well, actually I did, but I think this had a lot to do with the initial high dose of steroids, the incredible high at being alive and the instant easing of the strain of kidney failure. As steroids were weaned down (to my maintenance dose), I started to struggle – there was a realisation that this would not be a smooth ride. Consultants have told me repeatedly to not be surprised by this. After having peritonitis last January, then covid in April and then a kidney transplant in May. They thought it would take me a year, if not longer to recover fully and then I had the nerve pain, which kept me awake for hours at night and endometriosis on top of this. Frustration has been my ever-present friend.

Saying all that, I do not want to moan. I realise that an extraordinary chance of a full life has been gifted to me. I am getting stronger all the time – and the pain lessens a little bit each day. Work is something I’ve been able to do part-time, thanks to my brother, and photography is still a blessing to me. We have got out and about locally as much as we can, as much as we are able to in these strange times.

As we have kept close to home, I have tried to focus on local places, specifically local places of historic or archaeological value. Studying a history and archaeology degree at university – the two subjects have never been far from my affections. I thought combining my two passions – photography and archaeology would be a great use of time and documenting local archaeological sites would be useful too.

The sites we have visited are Cley Hill, in Wiltshire, which has two bowl barrows an iron age hill fort and medieval strip lynchets. Aside from the archaeological interest, Cley hill has also been my very own personal challenger. When I first ventured into the world after I learned to walk again, we went to Cley hill. I managed to walk only to the path. I couldn’t even get to the hill. We have been back many times since – and each time push through just a little bit further. In January, for the first time, (since Spring 2018), I managed to get to the top. It is a small achievement for most people but a significant milestone for me.

We also visited the abandoned Fussell’s iron-works in Mells – one of the pictures above shows an old sluice. The iron-works were started in 1744 by James Fussell. Just over 100 years later – due to bankruptcy, the site was abandoned, nature eventually took the area back. The iron-works are only a couple of miles from Frome, it is a site with prolific industrial archaeology, yet we only found out about it in the second lockdown. We have also walked the Vallis way walk, which also goes through the iron-works and beautiful ancient woodland. Additionally, there is an area of interesting geology.

There is significant archaeological interest at Mere downs, another site that I have only learnt about in the past year – cross dykes from the bronze age, a neolithic causeway and camp at Whitesheet hill. There is a cropped photograph of Whitesheet hill above. We also found a milestone from 1750, which now seems relatively new. There is still much to explore, so we will go back as soon as we are out of this current lockdown.

Finally, there are a couple of pictures at Avebury, which I believe we visited before the first lockdown. No words needed for this neolithic stone circle. It is a place of wonder and awe and a link to our ancient ancestors. I feel, on visits to Avebury, that I am reminded of something once known, but forgotten, maybe it is just an intangible connection to our past.

Silver linings are found everywhere, even in the most difficult of times. I hope we will continue to pursue this new hobby after lockdown – documenting as many local archaeological sites as possible, building my strength along the way too.

Life

Just over two months ago, I had my transplant! It’s been both an amazing time, and at points very difficult – due to the horrible word rejection and a near hospital readmission. It has been beyond what I could have possibly imagined. It’s also been quite lonely. I’ve been shielding and so my normal support network (apart from Darren), have not been able to help me like they would have done. So I have had to achieve a lot on my own, this has – according to the transplant team put me further forward than a lot of recovering transplant patients, which is positive. But its also been hard. I’ve appreciated more than ever, my family and friends, checking in.

There have been many wonderful moments – thinking I should be at dialysis and realising I don’t have to go. Having my first shower in 8 months and my first bath in 2 years. Knowing that all tubes and bits of plastic are out of my body. And most importantly, knowing that I made it. A week before the call, Darren and I had a painful conversation, we didn’t think my body could take much more. I’d had two bouts of peritonitis, one in November and one in January. I’d had covid in April and that was terrible, I narrowly avoided a hospital admission. So after covid, I was broken. But I did make it. I think my consultant may have also thought the same… when she came in to see me after the transplant she cried and then I cried.

There have been lots of challenges too. I’m on 30 tablets a day at the moment. So many drugs to get used to and their associated side effects – and all at once. One of which is a tremor in my hands. I cannot even take a picture on a camera phone without it being very blurry (though I managed it today, I think I just got lucky). They tell me that eventually, my body should get used to the drugs, but it could take a few months. They also took me off all the medication I was on before transplant. They want to see what the kidney can do and what it cannot. One of those drugs was for nerve pain, the nerve pain came back almost instantly and it was awful. Fortunately, I’m back on the medication. But it’s taken a while to get the dose right and I’m only now seeing respite from the pain.

In my first consultation after the operation, the doctor told me that these first three months would be harder than the previous three on dialysis. I did not believe him, as dialysis is so gruelling and I had covid. But now I’m living it I realise in some ways he was right. It takes a while to get the drugs right and the level of anxiety has been intense. In fact, I’ve never been this anxious before. But every time they mention the word ‘rejection’ the level of fear is palpable. This kidney is my life line, and a chance at a normal life. Although when it was said for the third time I handled it a bit better. Previous experience is helping – the new kidney keeps rallying.

Despite all the challenges, I really am so incredibly grateful. I know that once I’ve got through these first 3 months and once the fear of rejection subsides (all being well), there will be no stopping me. Now and then I have a really good day. On these days I can see a glimmer of my new life, a truly wonderful one. I am not sure what this new life will hold for me. I may go on a different path career-wise. But we will have to see what happens with this tremor and how I am feeling in a few months. I also don’t think I can build everything back up again, it took me a long time to save the money to buy all the equipment and a lot of it now needs updating. Plus, I now have a suppressed immune system and always will, so I have to seriously think about working with young children. Covid has brought this even further to the fore. So I will consider everything and think long and hard.

I appreciate all the clients that I have met along the way and some of you became friends. You have been there with me on this journey (I laugh as I write this as my Dad groans when he hears someone say they’ve been on a journey). But it truly has been. Your support has helped me through the darkest of days, now I hope there will be so much more light. Life will be full of possibility I just do not know where it might take me…

Oh life…

So, I thought I’d should give a progress report. I am better, but life is still challenging and unfortunately for me it’s painful the majority of the time.

I thought the best way to show you a glimpse into my life would be to write about a typical day. I wake up at 7.30, have breakfast and then get onto dialysis just before 8. When its not painful I can be off dialysis and clearing up at about 8.30. When its painful, its a very slow drain and takes me up to an hour. The pain is due to endometriosis in my peritoneum, which is where the dialysis fluid cleans my blood. When I drain I feel like it starts to rip at my insides. The only way I can get through it is to burn myself with a hot water bottle. I think my stomach is now permanently scarred.

After the first dialysis is finished I go and have a shower. I have a dressing where the tube comes out of my stomach. If this gets wet at any time you have to take down the dressing, clean the area and then redress it. Changing the dressing takes me about another 20 minutes or so. So, by the time I am dressed its about 9.30. I have three hours now before the next dialysis. If I’m well I get on the computer and so some photoshop work, After the lunch time dialysis, I make a kidney friendly lunch and then pretty much have to sit down, I normally have a nap at this point, as I just can’t stay awake.

I do some more work (if I’m well enough) or a couple of times a week my Mum and Dad come and get me just to get me out. At 5 I get back on dialysis. Once that is finished I have my evening and I try and get out for a walk with Darren. I’ve found that some walking each day helps me with the pain. At about 10 I do my last dialysis of the day and then fall into bed.

If the dialysis isn’t painful its a gruelling part of my life, but its manageable. But if its painful my days are awful and some days I don’t know if I’ve got the strength to do it. Invariably though I somehow keep finding that strength, and I move through it. In a months time I would have been waiting for a transplant for three years. To not be tethered to dialysis just to keep me alive, well as you can see that would just be life changing.

On a photography note, I am still practising with my camera and my nieces are guinea pigs, luckily for me. Here are a couple of pictures I’ve taken recently, next mini shoot is with Kara… not that she knows it yet.

There and back again

https://www.etsy.com/uk/shop/AuraDigitalBackdrops/edit?ref=seller-platform-mcnav

There and back again

So my last post was a bit traumatic. I wrote it, I lived it and I never want to revisit it. A few months on and I am much stronger. Life is still challenging as I am doing dialysis four times a day and sometimes its painful, sometimes its gruelling and sometimes its just over with no fuss. Fortunately there is a bit of light in sight. I am going to the overnight machine, which will give me my days back. I cannot wait, as I literally feel tethered to the house at the moment. They are also changing the fluid. Apparently it is less acidic and so will reduce the pain quite significantly, I am genuinely really excited about this new fluid.

After I started the dialysis, my body went into shock and my hb fell through the floor, because of this and because my weight was so low they decided I would not be strong enough to go through a transplant. So, 4 months ago I was suspended from the list. I was absolutely devastated about this. Transplant is my goal, my lifeline. So to be taken off was a blow, (even though I knew they were right.) Three weeks ago I thought they were going to let me back on the list. The meeting was scheduled to discuss my case and my consultant (who had to make sure I was strong enough) told me that he was sure I would be put back on. But I got the call and they told me that because I had been so poorly I still was not strong enough for the operation. So, I needed a bit of extra time and I needed to put on at least 2 kilos. I hadn’t put any weight on in 6 weeks. So for me this seemed like an impossible task. But, three weeks on and I am half a kilo away from my goal. I cannot imagine how I am going to feel when they put me back on the list. Elated springs to mind.

I have continued to work as much as I can. Shoots are still a way off. I get tired so quickly and shoots require such a continued burst of energy, which I just don’t have. I can though work on my digital backdrops on photoshop. I sold one to a photographer I really admire last week and I was chuffed to bits. I am also still doing my stock work. The two combined aren’t bringing me in a wage, but its enough to pay a few little bills and buy Darren a guinness every now and then. Plus, its kept up my skills in photoshop which would have been quickly lost had I not been regularly working in photoshop.

https://www.etsy.com/uk/shop/AuraDigitalBackdrops/edit?ref=seller-platform-mcnav
Digital Backdrop, fluffy sheepskin and teddies

Above is one of my backdrops and here is the backdrop with my niece composited into the image…

 

https://www.etsy.com/uk/shop/AuraDigitalBackdrops/edit?ref=seller-platform-mcnav
Digital Backdrop, fluffy sheepskin and teddies

 

The one below is one of my most popular backdrops at the moment.

 

Digital backdrop, wicker basket and white fairy lights

I really hope that my next blog is even more positive and you never know that transplant call might be just round that corner. I don’t think there will be any stopping me then. I am going to grab life and celebrate everything. I am as before so grateful to the people in my life that have got me through this time. Their support means everything to me and it will not be forgotten.

 

Getting better – in kidney failure

This is a blog post that has been so hard to write. There were a couple of occasions over the past few months when I didn’t know if I was going to be here to write it. Every time I thought I was getting better there was another twist and subsequent turn that meant I was more poorly than before. I did everything I could think of to get myself better, but in the end I needed an operation and dialysis.

 

So, as I said in my last blog post, my problems started in January. I had unexplained sharp pains in my body. In February I developed a chest pain and in April I was struck down with gout. I didn’t know it at the time but I was becoming very ill.  If I look back now I can see I’ve had pretty severe weight loss since January. I was 7 and a half stone in January and now I weigh 6 stone 2 pounds. The gout that for most people lasts a few days didn’t seem to get any better and every time I came off steroids it flared, and I was in agony. By May I had extreme pain in my hands, arms, feet, legs. I joked that the only place I didn’t seem to have any pain was in my head. Though I had confusion and even the smallest things seemed to fox me. Running a business for me became out of the question I just didn’t have the energy or brain power. I have since been told by a rheumatologist that I probably had pain from the gout, I had calcium in my blood which caused pain and a nerve pain which went from my foot to my knee. I soldiered on, but I could not walk, I could not sleep, I was not functioning at all. Three weeks later I saw my consultant and his reaction when he saw me was ‘oh golly’. I was subsequently admitted to Southmead hospital.

 

Whilst all this had been going on I had been seeing another consultant about a malfunctioning gland in my neck. I had a scan which revealed a small tumour on one of my glands. This gland was due to be removed fairly quickly, but my renal consultant had decided that this was causing some of my symptoms and maybe all of them. Two days after being admitted I had an emergency operation to remove this gland. There are four glands next to the thyroid called the parathyroid (parathyroid means next to thyroid, but has nothing to do with the thyroid, confusingly). They thought one of these was not working. They did not think it possible that all of these were not working because for this to happen you need to have either been on dialysis for years or have had an extremely low kidney function for a prolonged period of time. My function was holding at 12%, so they didn’t think that this was possible. I had the operation, and all of the glands were malfunctioning. They had all gone autonomic causing calcium to be leeched out of my bones, (giving me bone pain) and then it was depositing the calcium all round my body, causing me other pains. This also becomes extremely dangerous once you reach a certain level and mine was at that level. The operation was a success and I felt much better straight away. I was sent home two days later. I did well initially, but soon I couldn’t walk again, although the pain was not as bad as before. I was just so weak and my legs were so atrophied. Two weeks after the op I went to see my renal consultant in a wheel chair. He was perplexed as to why I was still struggling to walk.

 

Four days after this I saw a rheumatologist. He thought that I needed dialysis to clean my blood and once that had happened I would be able to walk again. My renal consultant phoned me on the same day, he told me that for all the glands to be misfiring I must have had an extremely low kidney function for a long time. He had gone back through my results and decided that I had probably been below 10% for the last couple of years. He thought I had uraemia and it was this that had caused the weight loss, muscle atrophy, weakness, fatigue etc. He agreed with the rheumatologist that I needed dialysis, but I needed it right away. He was worried that the uraemia was atttacking my heart. I was already scheduled to have planned dialysis and an operation date had been arranged for later that month but my consultant said that this was not soon enough and admitted me to Southmead hospital the next day. At Southmead they did emergency dialysis putting a line in to my neck so the dialysis machine could be hooked up to me. The line went from  my neck down to my chest. I was awake. I had a local anaesthetic, but I was so weak I felt like they were going to break my bones. I could hear the tube rubbing and being pulled through and then I was stitched up. It felt like I was awake for my own post mortem. I was traumatised and when my husband saw what had been done, he was traumatised too. I went straight down to dialysis. They asked me how much time had the line had to heal. I said an hour. It was a difficult day, probably one of my worst.

 

I have now been on dialysis for three weeks. In this time my body has gone into to a bit of shock, I have had extremely high blood pressure, severe anaemia and intermittent very high calcium. Lots of my blood results have been very poor. All have been treated with drugs and I’m hoping that I now will be able to get strong again. In the meantime, I have unfortunately been suspended from the transplant list. My weight is too low and they want to make sure my heart is strong enough for the transplant operation, my hb level also needs to rise as they will not do the operation with hb as low as mine. So, its been traumatic, and absolutely the toughest time of my life, (and I have been through my fair share). What I can say though is the people around me have been wonderful, beyond wonderful. I have been truly supported. My husband has been amazing, words cannot describe how brilliant he has been through some really exhausting and distressing days. He has cared for me while juggling his work and all the day to day activities that still need to be done and he has supported me throughout.  Also My Dad who has taken me to nearly all my dialysis sessions (which unfortunately are in Cossham, Bristol which is 25 miles away so it makes dialysis days extremely long). My Mum and sister have also been carers taking the load off my husband. My brothers, Sister in law and nieces and nephews have all been there to make me smile and bring some much needed moments of normality.  My best friend and cousins have been a constant support too, especially in the darker moments. A friend of mine sent me a care package with lots of amazing treats. A great aunt and uncle sent me some money to make sure I could buy good food to make me better, another great aunt and great uncle and cousin sent me money to go and get pampered. I have had lots of flowers from other family members. I have been overwhelmed by the support. To know they are thinking of me has helped me through some difficult days and I can’t thank them enough for their thoughtfulness.

 

My next step is an operation, (which is tomorrow) to have tubes put in my stomach for home dialysis. This will hopefully make my life a bit easier and then maybe, I will be able to get back to some semblance of a normal life and get back on the transplant list as quick as possible. For now, my business is on hold, I just need to concentrate on getting better. Then hopefully I will be able to return to the job I love, capturing special family memories on my camera, and making lots of happy memories of my own.

 

Thank you for reading my blog,

Victoria xx

Health and photography

Health and photography

Importance of health and my love of photography

 

Fyi, this is more of a personal post, but it does talk about both my health and photography.

Last night, was a long night. I was up at 2am and then 4am, which in itself is nothing unusual for me. But, last night as well as not being able to walk, (as there is gout in my foot) for a very brief moment I could not open my eyes. It was frightening, it took me about 30 seconds and then I could open them but they were stinging so much. I have had what feels like grit in my eyes for the last couple of months. But I wonder now if this is to do with the gout, another horrible complication of renal failure. Fortunately the Gp has given me steroids and I really hope that this is quick to work, for my eyes are very sore today.

As I couldn’t sleep, I was just thinking. A past-time I have got particularly good at in the last few months. My thoughts focused on positive mental attitude. I am a firm believer that this makes a difference. If the brain can keep going, the body keeps going too. If the brain gives up, the body has nothing to tell it it needs to fight on, it will be ok, it is worth the pain, and you will get through to the other side. It motivates and mobilises the body to keep fighting. But at the same time, I also think that a positive mental attitude can’t cure you. If major things start to go wrong with the body, you need help. The body is an amazing delicate ecosystem and once things start to go wrong there is a domino effect. All the positivity in the world cannot redress that.

My photography as always has always been a positive force in my life. I am continuing every day to do photoshop work and to take a couple of pictures, even if I am only walking a couple of metres to photograph it. The photography has been my solace ever since my diagnosis, it provides distraction and it is a creative endeavour. It is important to be able to create when your body feels like it is being constantly damaged. My love of photography is uplifting and no pun intended keeps me focused. My health and photography are now completely entwined.

I do remain positive, and I do believe I will be ok. The aches and pains that have been plaguing my body for at least a year, well, the doctors have found the cause. It can be easily rectified by removing a troublesome gland. So, I am positive that I will be able to keep strong, keep going and keep shooting.

Stay well, Victoria x

 

Saunton sands, Devon
Saunton Sands, Devon. Reflections in the water.

 

Saunton Sands, Devon. Reflections in the water.
Saunton Sands, Devon. Reflections in the water.

Saunton Sands, Devon. Reflections in the water.
Saunton Sands, Devon. Reflections in the water.

Stock photography by Victoria Ashman at Alamy

 

 

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