So over a year has passed, where have I been?! Well I have been very scarily fighting for my life.
I’ll try to keep this short, but it’s a long story.
Last September, having a relatively good period of health, I’d taken my handcycle and gone on a three-hour coaching spree in the absolute pouring rain. I’ve been less wet in the bathtub!! Other than resembling a drowned rat, I was feeling absolutely fine. I warmed up, dried off etc… and went to bed.
The next morning was the beginning of the nightmare that has been the last 10 months. I woke with backache, nothing spectacular and not horrifically uncommon- I sit down all day and had spent 3 hours on my bike in the freezing cold, something was bound to hurt. The odd thing was that I couldn’t straighten up. Refusing to pay too much attention to this, I applied heat, convinced myself it was a bad muscle spasm, got medication from the GP, and arranged an emergency sports massage. As the day progressed the pain got worse, it wasn’t responding to heat, ice, pain meds, muscle relaxants etc.… I carried on though, as the day progressed I started shaking and not being able to bear my weight whilst sitting up, despite this I still coxed a crew, well it was that or they didn’t go out and I couldn’t bear that.
Things kept getting worse, I had to take the weight through my arms when sat, I still couldn’t move to an upright position, but still I denied a serious problem. The Calea nurse came and went, my carer came, and I insisted I wanted a shower (despite the shaking and severe pain thing). She insisted I sought medical attention so I messaged a medic friend of mine who replied with “You should have phoned an ambulance 6 hours ago”. Reluctantly I considered this, with her messaging every few minutes to check whether I’d phoned an ambulance.
With much reluctance, I gave up, and the carer phoned for help. I got a friend to come round as well. By this time I was just lying on the bed yelping. Still trying to convince myself it was just a muscle spasm and this was fuss over nothing.
Eventually the paramedics arrived, by which time things were getting a little hazy. I recall them walking in and thrusting Entonox at me without saying much. I think they could probably hear my yelps in the street. With plenty of Entonox on board, they managed to get some sense out of me.
I remember we did my basic obs; everything was fine bar the raging fever, which I hadn’t noticed at all. At this point, I remember saying, “Is this the time to tell you I have a central line?” Cue serious faces from them and checking I was serious. We rushed, very gently over to A&E, where I continued to consume copious amounts of Entonox.
The Doctors were fantastic. It was clear I had an infection and it was assumed I had a central line infection that had probably gone septic that was causing all the pain. They tried, but failed to follow sepsis protocol- I should have had a stat dose of IV Domestos before leaving ED, but they were too worried about me breaching to get it sorted. They also didn’t sort out my pain relief properly and left me screaming in agony all night.
I had started having huge back spasms that brought my knees to my chest. The plan was badly thought out and they decided to send me for a PICC before starting my PCA, by this point, my back was continually spasming and I was stuck, completely in the foetal position on my side, which made for PICC insertion difficult. They also failed to sort out my dignity – I was desperate for the bathroom at 5 AM, but couldn’t get on a bedpan for the aforementioned reasons. Eventually my team came and decided that I probably had a line infection and would be up and out of there in a week with some IV antibiotics, but they would do a spinal MRI just to make sure. The plan was to put an In-Out catheter in until the PCA started and I’d be able to move more easily. The ‘minor’ problem being no suitable catheters on the ward, and I think the world’s slowest walker went to the other side of the hospital to steal some from Urology. Then there was the faff that the nurses didn’t know how to use them, errmmm it’s a catheter it’s not that hard and you put Foley’s in regularly.
My bladder by this time was progressing from hill to small mountain and eventually got impatient, I won’t tell you the rest, but I was a very soggy and unhappy patient.
Eventually things were settled, I had the PICC placed so I could get some decent pain relief, I moved to my usual ward, but I was still having massive back spasms. Eventually someone added in some IV diazepam and I finally managed to start sleeping a bit better.
MRI day came, I was told off for moving too much- they’d taken away my pain relief as it was out of hours, and I hadn’t had any diazepam for hours. Eventually exhaustion hit and I fell asleep in the scanner.
Back on the ward, the next morning and hell really started to happen. The MRI showed I had a massive Paravertebral abscess from L4- base of sacrum, Discitis at L5/S1 and Osteomyelitis at the same point, as well as a few other bits and pieces. The question was what to do. They said they couldn’t biopsy because of all the nerves in the area, but the blood cultures were showing nothing. Therefore, we started chucking more antibiotics at it.
I just didn’t get better. After 2 weeks, I was still as bad clinically and my fevers hadn’t gone anywhere. More antibiotics were trialled, but after 5 weeks no change. A 6-week course of other antibiotics was embarked on. I was starting to turn a corner, the labs were looking better and my fevers were down. Then 5.5 weeks into the course fevers returned and my labs were off again. We extended for another 2 weeks, at point 7 weeks and 5 days having been fever free for nearly 2 weeks I spiked a massive fever. I told my consultant and she said it was just a one off and not to worry. Cue a whole day of fevers. I woke up the next morning and found my consultant at the end of the bed “I wasn’t expecting to see you today”, “well I wasn’t expecting you to have fevers all day” she retorted!! After a long discussion with Infectious Diseases, they decided a 12-week course was the answer.
Sometime during this experience, somebody decided that I might be having antibiotic fevers and they wanted to stop my antibiotics for 48 hours and see what happened. Part way through that experience I spiked an over 40°C which persisted for the whole day, at some point in the early hours of the morning I was woken by the Critical Care Outreach Team, one of the scariest points of the experience, they are NOT a good sign. Thankfully, I went back on to the antibiotics and the fever came down. I had a similar experience when they changed the antibiotics to one I told them never worked for me, and that didn’t go well either.
So having had 5 weeks of mix and match antibiotics I then had a 12 week course of IV Domestos (other brands of bleach are available).
Somehow, a week turned into 100 days, I don’t quite know where or how, but what I thought had been a couple of weeks had turned into several months.
Eventually my birthday loomed, yet another big birthday that was looking to be a disaster. People did their best. My Mum sent some 30 balloons, they were much larger than anyone ever expected and caused much amusement on the ward!!
They also let me use a meeting room to have a little party the weekend after my birthday. I was so grateful to everyone who came to make it a special day. I eventually crashed out and fell asleep in the party!!
Birthday joy (and the giant numbers!!):
During all of these antibiotics, I had to undergo major physio- I couldn’t sit up to begin with and we did a lot of work to get me moving again. The first day they hoisted me out of bed I didn’t even make into the chair before I had to go back to bed again.
This was one of the hardest fights of my life. I was determined I wasn’t going home needing to use a hoist. Nope not happening, no way. (I have nothing against hoists as such, but I wasn’t letting this infection change my life even further). We battled a lot; there was a lot of tears, a lot of pain, but also a lot of laughter. I was fortunate enough to have the most amazing Physio and OT team. I don’t think I could have done it without them. They told me it was all my work, but they were there cheering me along, making me believe I could do it. I honestly think the outcome would have been different if it hadn’t been for them. Towards the end of my stay the physio changed and he was not at all supportive and I think would have made my recovery a lot less effective. Thankfully, by the time he was involved I was well on my way back to recovery.
My first time in a chair for months:
My first trip outside in even longer:
Shortly after my birthday came Christmas. Hospital Santa left me a nice present, and I was allowed a few hours home with my parents. We made the best of it as we could, but I eventually hit a wall and needed to go back.
I got to play with my beautiful gerbils though, who I hadn’t seen since September, and I’d only had them about 3 weeks before I went in, but, they seemed to know who I was and were very well behaved.
I spent Boxing Day recovering in hospital and slowly opening some more presents. I learnt Santa is extra generous when you’ve been fighting for your life!! The next day I got a few more hours leave and went home again. I had to wade through masses of paperwork and try to get some sort of semblance of normality going on. There were more presents (yay!!) and then back to recovering at hospital.
Eventually I started being able to get more independence. I still couldn’t sit up straight, and was stuck in a huge wheelchair, which reclined and tilted in space, which was fantastic at the time.
During this time, I was also assessed for Continuing Healthcare to try to get me more support at home. I had to prove that my needs were mostly medical rather than social, and that they fulfilled a few other criteria. A lot of stress, a lot of paperwork and unpleasant experiences accompanied that, but eventually I was approved.
I was to be sent home with 24/7 live- in care. This was a huge shock and is still taking adjustment. It also meant I had to sort out the spare room as it was basically a junk room, and we had to make it habitable somehow. Fortunately, just before I went in some friends and I had cleared the room a bit so that the gerbils could live in there, and people could stay the night at a pinch.
There was still a lot of work to do to make it habitable though.
By now, it was February and I was finally off my antibiotics, but still under the care of the Physio and OT and still trying to sort out the care arrangements.
I was given weekend leave, which was exciting and a big step forwards (and a huge one back as well as I was to discover). I was chief delegator whilst sat on the sofa. Eventually I fell asleep, I woke up shivering. I assumed I was just not used to the normal temperature of my house rather than the Greenhouse of the hospital. I was due to go to a formal meal and then a meeting the next day, which is why I choose that weekend for leave.
I continued to shiver despite a warm bath and many layers. I headed off to my dinner regardless (Denial is fantastic!!) Eventually I stopped shivering and didn’t think much of it. The next morning I woke feeling okay, and then all of a sudden the Rigors hit again. I was vomiting and apparently looked horrific. I was adamant I was going to my meeting, and then all of a sudden it hit me and I was desperate to go back to the hospital to sleep.
On arrival, we mentioned it all to the nurses, and I had a raging 41°C fever. ‘Flu had just hit the hospital and was about to hit the ward, so it was assumed that was the problem, and we would continue with preparations for discharge on Tuesday. They took some blood cultures just in case, but my primary consultant had just gone off sick too, so it was assumed to be one and the same having spent an hour or so talking to him on the Friday.
We continued planning for discharge, being reassured again it was just ‘flu, and then a nurse asked me why I was being started on IV antibiotics. I had no idea and we thought maybe it was a clerical error; suddenly a Doctor appeared and explained that I had sepsis again. This time they’d grown a bug so they knew what to treat. This was a kick in the teeth; having already had 17 weeks of Vancomycin my body wasn’t keen on more. To add to the joy I also managed to contract MRSA and got myself moved to a side room.
I redecorated the room with all the amazing cards and letters that my friends had sent. I couldn’t believe the amount of support I’d had over the last five and a bit months.
The Wall Of Love (several layers deep in places):
Another 2 weeks of IV Domestos and I was ready to go home. It was a new world I was going into, my hopes and dreams had been crushed (that’s for another post), and someone was going to be with me 24/7. For a creature of isolation, this was going to be a big change.
I made it 5 days and then aspirated vomit into my lungs. Having done a sputum sample I’d grown some nasty bugs and needed some IV antibiotics to treat it. 10 days after spending over 6 months in hospital, I was being readmitted. This was to be a simple couple of days impatient so that I could pass my test to treat at home. This, however, being me meant things didn’t quite go that way. What I hadn’t been told on admission was that my kidney function had gone awry. I continued with treatment and then one day I started becoming really drowsy and unresponsive. The nurses weren’t worried and thought I’d just had too many of my drugs. I was in a state; I was very distressed, as I couldn’t work out what was happening and why I couldn’t stay awake etc… The night team came on and the HCA went ape, she demanded a Doctor came to see me immediately I was completely different to the night before.
The doctor came and informed me that my kidney function had deteriorated even further, and that I had nephrotoxicity because of the opiates and benzodiazepines I was taking. She started treatment for that and kept an eye on me over night and into the morning. Around the same time, I’d had a bag of TPN and started feeling increasingly unwell. My obs were further off, and my central line tunnel was very swollen and painful. I’d become septic for a third time, despite already being on strong IV antibiotics. My heart rate slowed right down, my body was struggling, and I was actually very scared. Thankfully, with aggressive treatment things have recovered – my heart rate is still very slow at random, points and my kidney function is not completely back to normal. I have kidney pain now from the Acute Kidney Injury, but I’m hoping in time that will change.
I was eventually stabilised and managed to get home, but things have been rough since then. Having gone into hospital in September it was now April and I’d fought for my life three times in six months, lost my hopes and dreams, and had a completely new lifestyle to work with. I have permanent back damage, and have only just started managing to sit up straight again.
My life changed majorly and it was one of the scariest and exhausting experiences of my life.
Where I go from here unknown, and is definitely for another post.
If you’ve managed to get this far, I’m very impressed and I’m sorry it’s so long, but for an 8 month long rollercoaster ride from hell I’ve done my best to condense it. Thank you for your efforts, and of course to everyone who supported me during this hell.
I try not to spend too much time in my own head, but a few conversations I’ve had recently have caused me to do some reflecting.
I recall a Paralympian being asked
Did you always dream of being a Paralympian?
No, not before my accident!!
Nobody born healthy plans to be a Paralympian, let alone disabled. It certainly wasn’t on my career plan at any age. I grew up, like so many, with no indication of what lay ahead for me. So how did I get here? Could I have done things differently? Would an earlier diagnosis have improved my prognosis? There are so many questions you can ask, but does it really matter now? I’m where I am and I’m going to make the most of it I can. Do I blame anyone for what’s happened? Was it my fault? Blaming anyone isn’t going to help, pent up anger is only going to expend precious energy, and nobody is perfect, we are not infallible. All we can do is learn from any perceived errors, and try to ensure they’re not repeated.
I write the rest of this from a position I’d become relatively unaccustomed to. I’m back in hospital after an emergency admission, just waiting to get my discharge letter.
Last night was a very long and drawn out procedure, including being told I could wait six hours for the OoH’s doctor, when the EMT who arrived first on the scene quickly identified that I couldn’t wait that long. Whilst we waited for the paramedics we chatted, amongst things he said that I must have done all the
why me? Why did this happen to me?
But in reality, no I didn’t. I was too busy trying to live the best life I could and as someone else once said,
why not me? What makes someone so special that they can avoid their share of difficulties?
I’ve now escaped hospital, after one of my more traumatic hospital experiences. The nurses were fantastic, I was looked after really well, but the actual situation was quite unnerving.
Anyway back to the original point, I’ve known from a very young age that I was different. I didn’t do the same things other children were doing. I never really fitted in, but because I was succeeding at school, (I was fortunate to have a strong interest in academia from very early on) nobody really paid much attention to my social interaction and other difficulties. It certainly made things more difficult as I went through school, but would having a diagnosis in childhood made things better? Or would it have just segregated me even further? I suspected in my teens I had Aspergers, but I didn’t know how to pursue it, and debated whether I wanted to be labelled, when I was having a hard enough time with the bullies on a daily basis.
I also remember being in pain from about the age of five. I particularly remember doing a vault at gymnastics and my knees made a huge cracking noise, which sent pain rushing down my legs. It was always passed off as growing pains, and I spent a lot of time with various bits of me strapped or in tubigrip. There were so many signs that there was something going on, like ‘spraining’ my wrist using a cookie cutter. That ‘sprain’ turned out to be a tear in my scapholunate ligament, which took doctors about 10 years to actually do something about. I was fortunate to be referred to a fantastic plastic surgeon in my early twenties who realised when he could manipulate the bones independently there was clearly something wrong. I owe so much of my hand function to him. As the tear had been left so long other problems had developed, including a thumb joint that spent more time in a dislocated position than it did in place. There was also the time I fell off an inch high curb, and tore ligaments in my ankle- that was a pretty lovely looking bruise!! These are just a few of the incidents. Warning signs were missed, none of my dive or gym coaches questioned all the strapping and injuries that in all honesty I couldn’t explain. I was identified as hypermobile, but that was it. I was doing sports that welcomed flexibility so I guess they weren’t too worried. I guess I do feel a bit let down by them, they just kept pushing and pushing, and didn’t worry that I got pain from doing any high board work. I hope situations like that now come under welfare concerns.
In general I was passed off as clumsy and a bit of a hypochondriac. The GP was fairly useless, we turned up in an emergency as my knees had completely locked straight after being outside for a fire drill. His response “don’t go out in the cold”, very helpful(!). I bumbled on like this for years, spending a lot of time in pain especially with the aforementioned wrist. I used to get in trouble at school as my writing changed style regularly, but it changed dependent on pain and strapping positions. Exams were a nightmare, so much pain whilst writing essays, but I was a case of ‘suck it up, and get on with it’. I passed them all and eventually started university.
I could spend time wondering if things wouldn’t have reached this stage had there been an earlier diagnosis. Instead I realise that the lack of any diagnosis from either aspect taught me to be resilient, determined, physically and mentally tough, motivated and generally it has caused me to be who I am, for which I’m grateful. The skills it taught may never have developed to such an extent had I not been through the situations I’ve been through. I honestly don’t know if I would change how I did things as I could have ended up being a very different person, and I’ve kind of grown to quite like me.
University brought more problems- I took up rowing, which my knees didn’t really agree with. I later discovered they were maltracking which was causing the pain. A physio put me back together on regular occasions, and again identified hypermobility, but said the knee pain was because my bones had grown faster than my muscles, so my knee caps weren’t sitting quite right. He diagnosed me with a few things he could tell I’d had previously, but still nobody took me very seriously. I learnt the art of strapping joints in place with tape, and that was it really.
Things started getting a lot more complicated when I went back to uni for my second year, a chapter of my life which was the beginning of the 5 years I spent with a misdiagnosis.
That however is another long story, but as I said originally none of this was in the plan, but nobody has a life that runs to plan, if they tell you they do, they’re lying!! We all have our obstacles to climb and hurdles to get over, some are just bigger and more plentiful than others.
This time last year I had just got home from hospital, on a life changing, and life limiting treatment. Today, I attended a meeting of people from the lovely charity PINNT. I hadn’t seen most of the people for at least a year. At the meeting a year ago, I was in hospital, just starting on Total Parenteral Nutrition (TPN). I escaped the ward and I went down in my PJs to see everyone. Many comments were about how unwell I looked, and how much weight I’d lost. This year, completely different, everyone was saying how well I looked, which was fantastic to hear, it’s been a long time since I’ve had that said about me.
I have been fantastically lucky, and I am hugging some wood, and crossing absolutely everything I can as I say this, but TPN, has not only saved my life, not just in the basic, “I have nutrition, now I won’t die of malnutrition” sort of thing, but it has also given me a life. Prior to being on TPN I had a fairly limited life, I needed a lot of rest, basic tasks were impossible, and I was vegetating and not really doing much else. Not only does that take a physical battering to your body, but also an emotional one, a willing brain trapped inside a failing body is not a good combination long term. Now, a year on, I’m a different person, I was on the phone to a friend last week, who commented that I seemed to have a sparkle back in my voice. As much as I tried to deny it, these last 7 years have been trying at the best, and at the worst insurmountable. I don’t like to dwell on these things, life is too short, and it really doesn’t get you anywhere, but seeing where I am now, has made me realise actually how unwell I was at various points. This just makes me even more grateful for the life I’m living now. I understand how delicate life can be, so I’m going to make the most of what I’ve got.
I try to go to as many PINNT meetings as possible, because I believe they are a fantastic charity, but more so that the meetings aren’t illness, feeding focussed. There’s none of the “woe is me” that I’ve come across with so many other charities. We share knowledge and resources, and as the saying goes “knowledge is power”, in this case not in the evil dictator “I’m going to take over the world mwahahah” style, (although I am working on world domination!!) but we all have different areas of expertise and sharing even a small point can make a huge change to someone else’s situation.
They have also been there for me whenever I’ve had questions, from deciding whether a port-a-cath or Hickman line would be better, to how to treat a stubborn Jejunal infection, anything nutrition related really. As well as popping their heads in electronically from time to time just to check whether things are going okay.
There’s also the infamous quiz we have at meetings, which usually provide plenty of entertainment, not always intentionally(!!), seeing the look on people’s faces trying to remember all the reindeer before Rudolph showed his big shiny nose off, was quite amusing. For what it’s worth It’s about as frustrating as trying to name all 7 dwarves, which I am proud to announce, I have managed to do, whilst sat in a large rowing boat, in the middle of a lake, clearly the most obvious place to be asked to do that!!
Anyway I digress, PINNT are fantastic, and do so much for all members, especially given the size of the charity. Hopefully when I’m more settled in terms of finishing my degree, I can be involved in some way. Whether they’ll have me is a different matter!!
So much can happen in a year, I never expected this change of life, but definitely the best decision made about my health for many years. Edging my way closer to giving up, this year has been difficult in many ways, but also amazing, I’m so glad I never gave up.
I received the devastating news last week, that a dear friend of mine, had finally lost her battle with cancer.
It was a chance meeting that brought us together, we met in hospital, she was waiting to have major surgery, I was in because I’d dislodged another feeding tube. Doesn’t sound like the most obvious grounds for a friendship, but we were the only two young people in the bay, and happened to be in beds opposite each other.
I was immediately taken by her kindness and attitude to life. She was concerned about how she’d changed physically, but I had only known her as she was there at that time, and she looked beautiful to me. There was a spark to her when we met, that is impossible to explain, but made me want to stay in contact with her.
I remember passing her downstairs in the concourse one day, I think I’d been discharged at that point, and I went over to say hi, to which I got told to pick some numbers for the Euro millions (don’t think we won sadly!!) and she scribbled her number on the back of a lottery slip.
Knowing how overwhelming hospital can be in any circumstances, I made sure I text her regularly. I hope she found these messages beneficial. I think she found me to be someone to rant to when hospital politics were causing problems, or treatments weren’t going to plan. I know from another friend of hers that she was grateful that I stayed in touch when many of her old friends didn’t.
She quickly and easily fitted into my life, and it has always felt like I have known her for much longer than I actually have.
I remember her telling me excitedly about Fynn, he sounded just like her match. The same ethos and attitude. When I first met him, I could see why Vicky was so in love, and as cliched as it may be, I knew he was the perfect man for her. She had been concerned that she’d never find anyone because of her situation, so I was absolutely delighted when she announced they were to marry.
Her wedding was such a special day, although I know it was eventful in preparation. I got a text one day announcing that she couldn’t find any shoes so was going barefoot, which just seemed so Vicky, it always makes me smile. This eventually led to Fynn and his best man going barefoot, which seemed to confuse a lot of the guests, and had others in tears before it had even started!!
Watching her beam with happiness as she exited the church, is an image that will always stay with me. Another special memory is at the reception, when ‘Stand by me’ came on and everyone surrounded the happy couple and blasted the song out.
Vicky has always been there for me. From finding people for me to contact to try and keep me out of a nursing home (that’s a story for another day), to sending me postcards she had drawn with messages on whilst we were both in hospital, but at opposite ends of a huge building. It confused the nursing staff greatly when they were delivering internal post to me at 6 am, and random members of staff being asked to deliver them to me. I don’t think she knows how much they brightened my day and helped distract me.
Vicky will leave a hole in many peoples hearts and minds, even those who didn’t know her directly, but had followed her blogpoppies and epiphanies or had come across her story in the media. She wanted to make sure before she passed that the business she and Fynn ran, was in a strong position and she could leave a legacy. She has certainly done that. Please take a minute to look at their site Imagine It and help make sure her legacy reaches its full potential.
I can’t imagine what her husband and family are going through right now, but there are so many happy memories she created, that I hope they can be remembered at this dark time.
Vicky you will be missed, but your spirit will forever be strong, and in my heart and mind.