Disneyland.

This week, Oliver and I spent three nights/ four days in Disneyland Paris; it’s a trip we had booked for a long time, and one I wasn’t sure would happen after my extensive hospital admission, but we made it. I’ve been to Disneyland Paris before, but not since I’ve been in a wheelchair, and so I was worried about how accessible it would be and how much I’d be able to do. It was Ollie’s and my first holiday together so we wanted it to be special… and that it definitely was.

Disneyland Paris operate a ‘card’ system where, with a permanent disability, you can bring proof and a green card is issued which entitles you to enter attractions via the exit or another designated entrance for those with disabilities where there is a shorter queue time and an accessible entrance. The type of disability you have is indicated on the card by a cast member when it is issued, and this dictates what rides you are able to go on. Surprisingly, the only ride I wasn’t allowed on was Peter Pan’s Flight, despite going on Tower of Terror, Thunder Mountain and Rock ‘n’ Roller coaster to name a few!

The majority of the rides were fairly well accessible, but this obviously depends on your type of disability as I transferred for them all. Rides such as ‘It’s a Small World’ had adapted boats so those unable to transfer could stay in their wheelchairs, Rock ‘n’ Roller coaster had carriages where the entire side could be opened as a door so I didn’t have to step over anything, and the sides of the carriages on Thunder Mountain folded down so I could use them as a slide board to get into the seat, reducing the risk of my hips dislocating.

One of our favourite rides, Crush’s Coaster, in the studios park, had an ‘accessible’ entrance which involved a flight of stairs both down and up, and a walk along a couple of corridors so wasn’t the easiest to access.

In terms of the parades, again there was a designated area for those with a green card to be able to sit. This meant that Ollie and I watched a parade and the illumination/ firework show without me having people standing in front of me. Although the space was cordoned off for us, obviously numerous green cards are issued, and so we still had to get there early to not have other wheelchairs or people in front of us.

For meeting characters themselves, there were numerous different, conflicting rules in place. For some the green card wasn’t accepted at all and the regular queue had to be joint; this seemed to be the case for the characters which weren’t on the programme but made a random appearance. For those on the programme, more often than not an appointment card was issued to us and we came back at a particular time and was taken straight to see the character at that time. A few characters in the studios park had to have appointments booked with through the ‘Lineberty’ app and with others the green card meant that the regular queue was held and we were able to see the character almost straight away, occasionally waiting for one or two families to go ahead.

We stayed at the beautiful Disneyland Hotel which helped with accessing the parks; it meant we didn’t have the shuttle busses or long walks to contend with, particularly when I was feeling unwell or exhausted as our hotel was right on the doorstep of the Disneyland Park.

We had an accessible room on the ground floor which was huge, and also had a large bathroom. However there was only a bath and no walk in shower although we got by with that. We had breakfast included in the hotel which was lovely, but the food was laid out in quite a tight space which wasn’t too easy for Ollie to get the chair round.

We had a gorgeous character dinner at our hotel on the last evening of our holiday, which was a buffet with a huge selection of starters, mains and deserts and was a bit more spread out than breakfast, making it easier to get around. However, three of the staff members just totally spoke over the wheelchair to Ollie, totally disregarding that I was even there which led to us complaining; we didn’t let it ruin our evening, but it’s hard to put into words how awful being treated like that makes you feel.

I always have found packing to go away stressful, but since being unwell that stress reaches a whole new level. Having the worry of sorting medical supplies, stoma bags, catheters etc and ensuring assistance is in place for the station amplifies that stress enormously. Despite booking it months in advance, the assistance from Eurostar definitely wasn’t the best I’d experienced. All it really seemed to consist of was a member of staff getting a ramp to get us on and off the train (which you would have thought would have been a given as my ticket was a wheelchair space and not a normal seat). At Ebbsfleet Station we happened to be lucky, getting a nice member of staff who helped us with our bags although we were told that’s not what always happens, but when we got to Disney there was no member of staff able to help with our bags so Ollie could push me, so we had to struggle ourselves with our suitcase and my wheelchair which wasn’t easy, and we had to do the same coming home. Why offer assistance when all they do is get a ramp to get me on and off which should be the case anyway for me to access the service? Obviously this didn’t spoil our time away, but would have made the travelling much less stressful.

I wish a holiday would mean a break from my symptoms too, but unfortunately that wasn’t the case. Dislocations, faints, pain, needing the chair, sickness, dealing with my stoma bag etc continued, but I may be the first person to have dislocated their shoulder on Tower of Terror!

Whilst I’m now beyond exhausted and could (and probably will) sleep for a week, we had an amazing break together, and I’m so grateful to have Ollie and for him being so understanding and accepting of my health needs. I am back to reality now and to my days being filled with hospital appointments, waiting for surgeries and trying to best manage my illnesses; However, we have memories that’ll last a lifetime and we’ve had the happiest time together at the most magical place on Earth.

Dictation.

Having multiple, complex medical issues mean that, to atleast some degree, my days (and life) are dictated by my ill health. This can be things such as regularly taking medications everyday throughout the day, getting to appointments, having medical visits at home, emptying and changing my stoma bag and even things as simple as mealtimes to correlate with antiemetic medication. Illness has also meant that I’ve had to intermit from university for the last three years and be living a life I never expected I would be at 22 years old. However, the more of the day that is dictated due to my health, the more things really start to get to me as I feel like I have no control over my life, and any sense of normality is lost.

Lying in bed the other morning, I felt exhausted after a bad night and just wanted to lie there for longer; yet, whilst others could just lay in bed, I had a stoma bag that was fit to burst, and I also had to get up to take morning medications before it got too late for them. I get so frustrated when I can’t choose what I want to do because of being ill and the implications of that, yet there’s nothing I can do about it. Being unwell truly has turned my world upside down, from the smallest impacts to having to use a wheelchair and rely on carers, my life is far from how I imagined. The lack of control really is such a difficult aspect of chronic illnesses to deal with.

One of the most devastating losses has been having to intermit from university. I was fortunate enough to have had successful interviews and get the grades for Cambridge University, yet after my first year, during which I had the time of my life, my health had deteriorated to a point where I was unable to continue my studies. At the time I honestly didn’t see a way forwards. Yet somehow I got through it, but my ill health has been relentless, and one year of intermission ended up being three years which have been, and continue to be, the most difficult time of my life. I was hoping to go back to study this October, but my body had other ideas where I ended up with life threatening sepsis and a two month hospital admission to endure.

However, after a meeting with university this week, I am starting to see a small twinkle of light at the end of this very long ‘intermission’ tunnel… I just hope it’s not another oncoming train! On Wednesday, my Mum, Dad and I went and met various members of staff from Churchill College, the Disabled Resource Centre and the Student Union. To say I was nervous would be the biggest understatement, but I came out feeling the most hopeful than I ever had about getting back. Unfortunately, due to the way that things work, college can’t just put our plan in place, but instead it has to be agreed by an ‘Applications Committee’ who most probably won’t discuss my case until late August at the earliest.

Our hope is for the plan to be that I will return in October 2020 for Michaelmas term. I’ll start from my first year, but only do 50% of the modules as these are the ones who’s content has changed since I was there. I will then progress onto my second year in October 2021, but split my second year over two years so I have half the workload, giving me more time to deal with my symptoms, overwhelming fatigue, any potential flare ups and medical appointments. We don’t know yet if this will be ‘okayed’, but I’m keeping everything crossed that it will as I actually think this will be manageable. We do have a plan ‘B’ if this isn’t approved, but I’m hoping it won’t get to that.

Life is tough, but feeling like it’s out of control makes it even tougher. My daily routine is often dictated by implications of my illness and ultimately the pathway of my life is being directed because of my ill health, but I’m determined to keep what control I can, when I can, although the situation is far from ideal. I’m going to do everything in my power to get back to university, but with a body and health as unpredictable as mine, I just don’t know what’s around the corner. All I know that in the meantime, despite my shocking anxiety and depression at the moment, I’ll make the most of all I can and cherish those around me who have stuck with me throughout this ordeal – I’m eternally grateful and indebted to you all.

Family.

I am a very family orientated person, and am insanely grateful for my family as I often mention, but this week as we had the chance to celebrate various family members, it made me realise just how lucky I really am.

Sunday was Father’s Day, and so we had a lovely family meal with my Mum, Dad, Laura, Nan and Jeffrey. We only ate indoors because of my vomiting and stomach pain post eating being bad, but just spending some time together was so lovely and actually having time just to sit together and have quality time to chat was amazing.

It’s crazy as having the chance to sit together to have a meal is something that most people take for granted, but it’s something I longed for when I was in hospital, and it really is the little things in life which mean the most. My family have been my absolute rock throughout the last couple of years, and having time together meant so much to me.

As well as this, it was then my boyfriend, Ollie’s, birthday on Wednesday. I really enjoy celebrating others’ birthdays, and I just wanted to make it as special as possible. Ollie stayed at my house the evening before his birthday, and he opened his pressies and we had dinner together. We then woke up together on Ollie’s birthday, and had a bit of time together before he went to work. In the evening, Ollie, his parents and I went out for a lovely curry – it was really nice to spend time with the Mendes family (my second family!) who again have been so supportive throughout everything, particularly my most recent hospital admission. I can’t explain how amazing it has been to be ‘accepted’ into another family and to be made to feel as welcome as I do despite all of my medical problems. It’s something that I never thought would happen.

To finish off the week, on Wednesday I had a visit from my dear friend Deborah, and yesterday was my Dad’s birthday so another celebration was due. He opened his pressies with all of us, and got lots of cards and of course cake was in order. It’s crazy because I know how fortunate I am to have my family around me, but events such as those this week makes me sit and reflect on how truly lucky I am to have such wonderful people in my life.

I’m desperately trying to see the positives within the difficulties I’m having at the moment, and the family I have surrounding me is the biggest blessing I could be fortunate enough to have.

Making the Most of Things.

Relentless is the only way that I am able to describe my ill health at the moment. Fainting, dislocations, being sick after eating and pain just to name a few, but somehow I’m trying to have a ‘life’ alongside the medicalisation which is dominating my life at the moment, but this is far easier said than done.

Ideally, I shouldn’t have any of these issues, or at least be having a life with my medical problems just ‘slotting’ in. I should be at uni or having graduated, just going to the odd few appointments having adapted to my new ‘normal’. However, here I am, my health deteriorating, relying on carers, not having a purpose in life and ultimately, just existing. I’m trying to plan things to look forwards to, but most of the time these have to be cancelled, and I no longer want to plan things as cancelling things in my eyes means letting others down or being an inconvenience having to cancel fairly last minute.

However, whilst still weak from my admission and struggling mentally with everything, I tried to find some time for ‘nice’ things this week.

On Monday I was lucky enough to spend some time with Grace, a dear friend of mine. We just stayed in and chatted, but it really cheered me up and it was just so lovely to spend time with someone so understanding. On Wednesday, before the rain started again (has it even stopped?!), my carer and I took Jeffrey out to Jeskyns. It’s unbelievable how much better some fresh air and getting out in the open can make you feel; we also met some other dog walkers and Jeffrey had a good run around with the other dogs. As well as this, we went shopping afterwards and took Jeffrey with us to do some assistance dog training… he just makes me so proud – we have a long way to go until we are fully qualified but I can’t wait until we get there!

My biggest achievement this week came on Wednesday afternoon when, for the first time since my two bladders stimulator surgeries, since battling sepsis and since being bed-bound for eight weeks, I went swimming. This was a huge thing for me for two reasons; physically because my body is so weak after being through so much, but also mentally, being in a swimming costume when I have an awful body image since all the weight gain, steroids and medications. Swimming was exhausting, both physically and mentally, and I could only swim a tiny fraction of the distance that most other people can and also what I could previously, but that’s not what matters; all that matters is that I’m doing what I can do for myself, and I’m so proud I made the first step of getting back to building my strength up again.

Yesterday, I had my hair cut and highlighted – again something that most people don’t think twice about, but I find it exhausting and my joints kill me after sitting in one position for so long. I’m fortunate that our hairdresser comes home and is understanding of my problems, but I feel slightly more human now all the split ends from my hair being shoved up in a bun for the best part of 8 weeks in hospital have gone.

The final ‘treat’ of this week is going to the Spice Girls this evening. This has been booked since last November and is something that, when I booked it, I thought I’d be in a fitter state for. However, I’m trying to learn that I have to make the most of what I do have and what I can do. I don’t have the energy to get ready, but I know once I get there it’ll be a nice (albeit exhausting) evening.

It’s so very hard to try to focus on the positives and arrange ‘nice’ things when I feel this awful and when my mental health and self harm is as bad as it currently is, but I’m trying my best to do so. I need to keep looking forwards, and only look back to see how far I’ve come.

Back Again.

After being in hospital for eight weeks and only managing to spend a week at home, I landed back in A & E this week…

On the day I was originally discharged from hospital I was supposed to have blood tests done to just check all my infection markers were okay and had continued to improve. However, due to me having both my port and my PICC line removed because of the sepsis, and my rubbish EDS veins, the phlebotomists and doctors were unable to get any, and so decided that it was absolutely fine to go home without them and they suddenly ‘weren’t needed’.

When I got home, a UTI was confirmed as we had suspected prior to leaving hospital from when my indwelling catheter was removed, and I was given a weeks course of antibiotics. After a week of taking the antibiotics, my symptoms hadn’t cleared up, and on Friday evening I had worsening pains in my back (kidney area), spiking temperatures again and an extremely high heart rate, so my Mum had to get me to A&E.

I couldn’t believe it. After only seven days at home, I was back in hospital. Memories came flooding back, and I just couldn’t cope. Without my Mum with me, I honestly don’t know how I’d have got through it. Why can’t my body just work? I need a break from this relentless ill health. I surely must have a change of luck. There was no way I was being admitted again – whatever happened I’d decided I’d have the necessary treatment but would be coming home.

I sat in the A&E waiting room in tears – I just wanted my life to be carrying on as any normal 22 year olds’ would. It was a Friday evening; I should have been out shopping, for dinner, at the cinema, seeing friends and family, or even just being at home not feeling this unwell would have meant the world to me. When will this all end? It’s a question that constantly goes around my head, but what if it doesn’t end unless I end everything myself? For the last couple of years I’ve kept telling myself that I’ll get through this, that things will be okay… but when will it be okay?

I was taken through to majors and urgent blood tests had to be done. It took two nurses, three doctors, over 10 ultrasound uses and six and a half hours, from 8pm until 2.30am, for my bloods to be taken as my EDS veins were playing up once again. If I heard a medical professional say ‘sharp scratch’ one more time, I think I’d have screamed.

The thing is, needles don’t bother me at all after all I’ve dealt with, and all I wanted was for the doctors to get blood so we could know what was going on, but when you feel so ill, exhausted and upset, there is a limit to what you can take. I’m always one for asking doctors just to ‘try one more time’ when they want to give up trying to get blood and leave it for someone else as I just want the tests done so they can be processed, but a doctor we had trying was just butchering me, using the ultrasound and ‘aiming’ for veins in my arms, feet and legs almost like he didn’t want to be beaten, but all his attempts came to no fruition apart from numerous bruises and swellings.

The third (and final!) doctor who tried managed to find a deep vein with the ultrasound which fortunately cooperated and he was able to get blood at 2.30am. I also had to do a urine sample and then it was a waiting game for my Mum and I who were absolutely exhausted by this point.

After waiting for another two hours, the doctor came back to tell us that they think that the UTI I have has spread to my kidney, as I had expected. They were letting me home with another weeks worth of antibiotics, and on the proviso that if the pain doesn’t improve or I continue spiking temperatures etc, I’m to go back. My Mum and I finally got home just after 5am; I was emotionally and physically drained, just got myself into bed but then struggled to sleep as I had so much going through my mind. I did have a couple of hours sleep, and had a lazy weekend in my pyjamas, but I just long to be outside enjoying life. There’s no point saying ‘I’ll get there’, as no one knows that. No one knows how long this relentless spell will continue, I just have to somehow find the hope that things will stabilise for a while and some form of normality will resume.

Home.

The first week at home has been overwhelming, exhausting and wonderful in equal measures. It’s so difficult to convey how mentally and physically challenging it is coming back to ‘reality’ after such a long admission, where my body is insanely deconditioned, I’m so mentally and physically weak and am finding even the smallest task crazily tiring.

One thing that I knew would be a mammoth task when I came home was organising the coordination of my healthcare. This is always a task that often takes the majority of my time in day to day life, but recently my Mum and I had to cancel, re-arrange and postpone so many hospital appointments which I was obviously unable to attend whilst I was admitted. This meant we are now left with piles of appointment letters, notes we’ve both written in various places, my diary with annotations everywhere and, after the bank holiday weekend, a huge list of phone calls to make to try to put appointments back in place and have some sort of follow up from the hospitals.

I’m so grateful to have had my Mum on half term from work this week to spend time together, but also for her practical assistance to make calls and help with my filing as I couldn’t have waded through it without her! I’m slowly getting back to my diary being full of appointments, although I’m still waiting to hear back from a lot of people. I always have to keep on top of this admin as I feel it’s part of what I can to help myself, to ensure I have the appointments I need etc. Being behind with this, although due to no fault of my own, makes me really anxious so I can’t wait to be back to normality.

However, as well as having to be my own medical secretary, there have been some real highlights to my first week back at home. Being cooped up for eight weeks in hospital, I had a real craving for sea air and my parents promised me that we would have a trip to the coast once I was home. So… true to their word, on Sunday, my Mum, Dad, Jeffrey and I went for a drive to Southend. As previously alluded to, I’m finding everything exhausting so we weren’t there for very long, but it so satisfied my craving and being able to breathe in and experience the sea side made me so very grateful. We had a walk along the front, got an ice cream, went into some arcades, had some salty chips and then came home again (and that was enough to mean I slept for the entire journey back!). It was just amazing to appreciate all of the little things, the ebb and flow of the tide, sea air and time spent with my parents whom have been my rock as always, but particularly over the last couple of months.

Another huge positive of the week was watching the Europa League final with my Mum, Dad and Ollie, and of course Chelsea winning made the night even more special. Through times of hardship, I have realised even more how the little things in life truly are the things that mean the most, and having this evening in together with loved ones was just amazing. We ordered Nando’s (even though I was sick), just snuggled on the sofas and Chelsea coming out victorious made the night even more amazing.

I’m also very lucky to have had visits from friends and family, which has been so kind of them so we’ve be able to catch up in the comfort of my own home. I’ve been absolutely spoilt with beautiful cards and gifts which I appreciate so much.

Getting back to some sort of normality after such a long admission is never easy, but with persistent vomiting remaining a major problem, a UTI still lingering and Post Sepsis Syndrome to deal with, it has been more difficult than I could have ever anticipated. I can’t even begin to put into words the knock on effect this has all had on my mental state. Of course I can try to ‘move on’ and ‘look forwards’, but unfortunately these things are far easier said than done, although I am doing everything in my power to try to do so, as difficult as that is proving to be.

I have to remember it’s still early days and, to say the least, my body has been through a hell of a lot over the last couple of months. “Sometimes it takes an overwhelming breakdown to have an undeniable breakthrough.”

Discharged.

After a blue light ambulance journey, stay in resus, emergency surgery, two bouts of sepsis, over 75 doses of IV antibiotics, a central line, a PICC line, countless blood tests, scans and over eight weeks in hospital, I’ve finally been discharged home to continue my recovery there.

This admission is one that I am very fortunate to be coming out of alive, and that is a thought I’m really struggling to come to terms with. This has been the case before, but this time seems particularly difficult as the sepsis had been missed by two GPs and an A&E visit before I deteriorated as much as I finally did. I couldn’t do anything more to try to get help, but as difficult as it is I need to move on from that thought and just be grateful this hellish chapter of my life is over. I spent a lot of this admission, particularly the start of it, being absolutely petrified what the outcome would be, that I perhaps would lose my life, and these kind of thoughts are something that I never imagined having to cope with.

As well as dealing with my own illness whilst admitted, there was also a lot to cope with in addition to that with what was going on in my immediate surroundings, this admission more than ever. People aren’t in hospital because they are well, and so it is to be expected that difficult situations will be encountered, but some of the things I witnessed this time have truly stuck with me. I saw the death of two fellow patients on the ward, a patient who became a friend was given 8 months to live, another friend was given a cancer diagnosis, I watched dementia steal people’s loved ones and I saw patients who nothing could be done for. It’s crazy because fellow patients, who you spend all day and night with for weeks or months at a time become friends, and particularly the two deaths were incredibly hard for me to deal with. Sitting behind my curtain with tears in my eyes as the bodies were collected is a feeling that I can’t even put words to.

However awful they are, experiences such as the above do put life in perspective. They make me even more grateful for what I do have; For getting outside and experiencing fresh air again, for being able to go home and have a bubble bath, for time spent with my family and cuddles with Jeffrey.

One huge silver lining to my illnesses has always been the lovely people that I’ve met along the journey, this admission being no exception. I met Tina, a fellow patient, who I’ve made a friend for life in and who was my shoulder to cry on (literally) for the last 8 weeks. I met Miriam, a nurse who understood me like no one else and showed me unfailing care and support. I met Marilyn, a hostess, who always went out of her way to listen to me, whom nothing was ever too much trouble for just to name a few. These are relationships that I will always be grateful beyond what I can put into words for, as they were forged when I least expected it and when I was at my least loveable. Yet I wasn’t judged, and I was supported to get through eight of the toughest weeks I’ve had to endure; I’ll forever be indebted to everyone, both old friends and new, whom were there for me.

I could also not have endured the last two months if it wasn’t for my family and friends whom were there for me despite everything. Despite me not coping, spending most of my time in tears and being an utter mess, I was shown constant love and support and I will never be able to express my gratitude for that. To my Mum, for being my absolute rock, at my hospital bedside day in day out. To my Dad, Laura and Steve for constantly being there. To Ollie for loving me when I was at my worst. To Thea for coming to visit, for my lovely cards, messages and gifts. To Hayley for always messaging me, for being so understanding, for your visits and gifts. To Deborah, for your support and weekly visits. To Grace for visiting me, for my lovely blanket and lending me DVDs. To Ella for always checking up on me and coming to visit. To Emma for your constant messages of support. To all my other family and friends who visited, sent cards, messages, gifts and were there for us; your unfailing love and support truly got us through some of the hardest days of our lives.

I’m now home, and it goes without saying that it’s amazing to be back to home comforts surrounded by my family, but things are still far from easy. I have a UTI since having my catheter removed, I’m still being sick a lot and I have oesophageal thrush from the extensive use of antibiotics over the last couple of months. I’m also far from my ‘baseline’ mobility since spending the vast majority of my admission in bed, and it’s very frustrating not being able to do what I want to for myself and dealing with extreme fatigue, but I have to keep hope that things will improve and I will get some quality of life back. I also missed a couple of visits to Cambridge and missed sitting my exams, and so getting back to studying this October is looking very unlikely.

However, for now, I need to remain grateful for what I do have. I’m alive, I have the most supportive, loving family whom I’m lucky to be surrounded by and I’m back home where I belong. Thank you to everyone who got us through this admission… I’ll be forever indebted to all of you. 🖤

Homeward Bound?

After a very tough eight weeks in hospital, it is hoped that I can be discharged home on Thursday to continue my recovery there.

It’s crazy as I’m desperate to get home, yet for the last two months I’ve had the ‘safety blanket’ of and been fortunate enough to have been surrounded by doctors and nurses 24/7 who have been on hand to help manage my acute medical symptoms and deal with the issues that have been arising. Going from that level of medical support to coping with things alone at home is daunting no matter how long the hospital admission, but it’s a step I need to take to be able to hopefully get back to some level of ‘normality’, and maybe have some quality of life. Hospitals always find it difficult finding the right point to discharge me because I’m never ‘well’, and so it’s finding a balance of when they’re doing no more for me that I couldn’t be doing myself at home.

My IV antibiotics finish on Wednesday, and as I’ve not spiked a temperature in a while we appear to be getting on top of this infection, although I’m going to be sent home with oral antibiotics as a precaution due to how high the concentration of the bug in my blood was for a second time.

Whilst we appear to finally be coming to the end of this hellish admission which I’m lucky to be coming out the other side of alive, my mental health is at rock bottom, much worse than it has ever been before. Self harm has been an issue again, I’m struggling to sleep and spending most of my time in tears. I can’t explain how hard it is getting up day in, day out with a body that is constantly failing me, my ill health being utterly relentless. Whilst I’m dealing with a vast range of symptoms and having to deal with things such as caring for my stoma and catheterising, I’m also going to endless hospital appointments, and spending the rest of my time being my own medical secretary, chasing up appointments, sending emails and making telephone calls to try to get the care I need and co-ordinate everything. It’s such a huge responsibility and quite honestly feels like a full time job that I wish I didn’t have to do, as the being ill part is difficult enough in itself to cope with.

These past eight weeks have truly been eight of the most difficult I’ve had to face in my lifetime; I’ve had a whirlwind of emotions, and the fact that things may have been very different and I may have not come out of this alive is a thought that still haunts and petrifies me. My experiences have left me with PTSD as well as worsening my anxiety and depression. It’s true when they say that every cloud has a silver lining, and without this admission I would not have met Tina, a fellow patient whom I have been fortunate enough to have shared the majority of this admission with and who I wouldn’t have got through it without. Tina, you’re the most selfless person always being there for me despite what you’re facing yourself; I’ve truly made a friend for life.

With the next few days to get through and the task of packing up what I’ve called home for the last two months to fulfill, I’m full of a mixture of emotions with tears in my eyes. I wish I was going home entirely ‘fixed’ like I’ve seen countless other patients do, and I’m petrified of what’s going to go wrong next, but I really need to appreciate what I do have, what I can do and continue to engage with medical professionals in outpatient appointments to hopefully improve my current symptoms.

I can’t thank everyone enough for your love, support and concern throughout this admission. It’s been a very trying time for both my family and I, and every single kind gesture, visit, message, card and present has been appreciated more than I could ever express. I also wouldn’t be here without my Mum who has been by my side from the ambulance journey, to resus, to majors, to the theatres for my surgery and every single day since on the ward. You’re my absolute rock, you’ve dried more tears than I ever thought I could cry and I couldn’t do this without you. I truly am eternally grateful and indebted to everyone for everything. ❤️

Sepsis Round Two.

For the second time this admission, I’m battling sepsis.

I haven’t been able to bring myself to post until now – the last 10 days have been beyond difficult to deal with and things are still challenging to say the least. This second bout of sepsis stemmed from the PICC line that I had put in during this admission to have the antibiotics for the first bout of sepsis, and now I’m waiting for yet another PICC line for the antibiotics for this time. Having another central line put in is a huge worry for me, particularly after having sepsis twice in the last 6 weeks, both times from a form of central access, but I have real trouble being cannulated, and I have missed numerous doses of the antibiotics waiting for anaesthetists trying to get cannulas in so I’ve been left with no choice.

At the moment it’s a waiting game for the PICC line to be done, and they’re going to try to get another cannula in for the meantime. The microbiologist came up to the ward to see me to tell me that the bug grown by my blood was one of the many which grew from my port-a-Cath too, and is very aggressive. It can attach to bones and joints and valves of the heart so I’ve got to have another echocardiogram scan, and scans of other areas to check it hasn’t attached to anywhere else. There is concern about my Sacral Nerve Stimulator too which will have to be removed if the bug attaches to that so I’m really hoping the antibiotics get on top of it soon. I’m having another 14 day course of IV antibiotics (or ‘bleach of the medicine world’ as it’s being referred to).

As well as the infection, my gastro issues are continuing. I was supposed to have an NJ tube sited as I previously spoke about and, after being nil by mouth and all gowned up ready to go down, the decision was changed for the time being. It was suddenly decided that because my long term gastro care isn’t here, they are against doing any interventions for it here where they wouldn’t be followed up. It is uncertain as to what will happen going forwards, as the plan has been from here for me to be transferred as an inpatient to either the Royal London Hospital or UCLH for my gastro issues to be addressed which have flared up since the sepsis. However, it has also been mentioned by other doctors here that I’ll be discharged to home once my infection is cleared and have to be seen as an outpatient for my gastro problems… there is a real lack of communication and no one really seems to know what is going on so I have no hope of knowing! As hard as it is, I’m trying to take things a day at a time. I’m desperate to go home, but I also know that as things currently are, it wouldn’t be long before I’d become dehydrated and have to be re-admitted.

For now, I’m just trying (and failing) to cope. To deal with the sleepless nights, side effects of medications, constant cannulations, blood tests, relentless vomiting, fatigue, lack of control over anything and ultimately having my life on hold whilst it feels like everyone else’s worlds continue to revolve. This just isn’t how I imagined my life to be at 22 years old – this isn’t even a way of life. It won’t be like this forever, I won’t still be around if it is, but at the moment there’s nothing I can do apart from ride this tough time out. I just have to make the most of what I do have, and I remain insanely grateful for the support of my family and friends who have been, and continue to be, there for me, making this nightmare more bearable.

Blood, Sweat and Tears.

It’s been another week of blood, sweat and tears… Oh, and a lot of sick.

As I mentioned before, my Sepsis has now (very fortunately) been got on top of, but I’ve been left with flares of a lot of my chronic conditions, predominately my gastro problems. It’s beyond the remit of my current hospital and so I’ve got to be transferred to the hospital at which my neurogastro care is at, but this hasn’t been as straightforwards as I’d hoped.

I’ve been in the process of continuing with my gastro care at The Royal London Hospital rather than UCLH, and so this is where the referral was made. However, they’ve rejected the referral, saying that my care is at UCLH and so that’s where I should be transferred to, and have made the decision not to continue my care despite me explaining this is where I’d like it to be. The Royal London are going to have an MDT to discuss my case next week although the doctors here have told me not to hold out much hope.

This has been frustrating beyond words; there’s enough in my life I don’t have control over, and now I can’t even have my gastro care where I’d like it to be. We’ve also written to the NHS ombudsman to appeal their decision but I’m just keeping my fingers crossed that the meeting they have next week goes in my favour (although not much seems to in life).

Whilst waiting for this, the doctors here have decided to insert an NJ feeding tube on Tuesday. This is something that has been discussed on various occasions over the past year, but still news that I wasn’t prepared for and am struggling to process. They spoke how the next stage from there is usually PEG-J insertion and despite enteral feeding being something I’ve done a lot of research into, these are all huge steps away from normality and major things to deal with.

At times like this I have to focus on the little victories, and today I managed my first shower and hair wash in just over five weeks. That’s something I never thought I’d be so grateful for! It absolutely exhausted me and I slept for hours afterwards, but was definitely worth it.

For now, it’s a bit of a waiting game until we hear back from the Royal London, which I’m hoping we will do by the end of next week. However, I’ve got the tube insertion on Tuesday to get through in the meantime.

I find being in hospital difficult in so many ways, and it’s not just challenging for me but also a strain on my parents too who have and continue to do everything in their power to make this admission as bearable as possible for me, being by my side throughout the entire thing; I can’t explain how grateful I am – I couldn’t do this without them (or the cuddles from Jeffrey!).

Mentally I’m at an all time low and I can’t wait to get home, but realistically I know I’ve got to be in a more manageable state than this to be able to cope at home, and I will get there… I don’t have a choice.