2019. What. A. Year.
I’ve been tried beyond belief, but against all odds I’ve survived it and I’m still here fighting.
Starting back in January I had absolutely no idea that this was going to be the toughest, most scariest year I’d faced; It was probably best that I didn’t know what was to come.
January saw me have the first (trial) stage of my Sacral Nerve Stimulator (SNS) surgery. This was under my urologist with the hope to give me some sensation in my bladder and potentially enable me to pass urine normally. For the past three years I had to self catheterise everytime I emptied my bladder – I could pass no wee normally at all, and I had absolutely no sensation in my bladder which meant I had no idea how full it was. The temporary stimulator was inserted, which left wires coming externally out of my back, meaning I was unable to shower or bath for the following six weeks until I had the second stage surgery. The first few settings we trialled the stimulator on had no success at all, but eventually we found a setting which gives me some sensation in my bladder and enables me to empty some of my bladder, meaning that I have more of an idea when I need to use the loo, and also reduces my catheterising down from 5 or 6 times a day to usually just 2 or 3.
Recovery from this was tough, even tougher knowing the second stage surgery was looming, but having some benefit from it made it more bearable. I was also supported hugely by my wonderful family, who I couldn’t have got through this year without.
February came and Ollie officially asked me to be his girlfriend. This was one of the highlights of my year, as many of you know, Ollie is my absolute world and I have no idea what I’d do without him. I feel like we have been together way longer than ten months; he understands me like no body else and has supported me through the hell my body has given me this year, something I didn’t imagine anyone putting up with.
In the beginning of March, I had the second stage of my SNS surgery. This was really hard for me to cope with as I’d just been getting over the initial surgery then I was back in for yet another general anaesthetic and another operation. However, whilst the recovery was far from easy, no longer having the wires out of my back, and having the device entirely internally was so much easier to live with.
March was a rough time ‘health-wise’ with random deteriorations in my health and being extraordinarily poorly without an obvious cause. This continued, leading to my family and I missing out on various things as I was just too ill to leave the house. Little did I know I had red flag, raging, sepsis which came to a head during the early hours of 27th March. This resulted in me being blue lighted into resus just hours from losing my life; if my Mum hadn’t been sleeping in with me then I wouldn’t be here writing this now. This is a thought that has stuck with me and I find really hard to come to terms with.
Following being admitted, I spent eight weeks admitted to hospital; I had to have further surgery to remove my port-a-cath, I had a central line and a PICC line inserted which then also became septic and I required over 75 doses of IV antibiotics.
I have never been so petrified in my life than I was when I was admitted and I felt ill beyond what I can put into words. Still, finally, on the 23rd May I was discharged home with the hope to rebuild my little world there. Recovery, both physically and mentally, continued to be tough and Post-Sepsis Syndrome made things a lot harder.
For me, this admission put life into perspective even more than it was before I went in. The gratitude and appreciation I had for things such as fresh air and being able to go out on a walk with Jeffrey was overwhelming. My parents and I ensured that we made the most of everything, even having a quick trip to the coast during one of my first weeks home as I was craving sea air so much.
One of the first huge things I had to look forwards to (and get myself well enough for) a month or so after being home was going to see the Spice Girls. We had had the tickets for ages, and I was so ready for a night where I could re-live my childhood! My Mum, Laura, Laura’s friend Cait and I all went and we had such an amazing, albeit exhausting, night. I had a wheelchair space so I didn’t have to transfer, we had an amazing view and I even bumped into Thea and Jakob on the way out (what are the odds?!) which made the night even more special.
At the end of June, Ollie and I went to Disneyland Paris for a couple of nights; this was honestly one of the highlights of my year. Whilst I didn’t get a break from my symptoms (and managed to dislocate my shoulder on the Tower of Terror) the most ‘magical place on Earth’ really lifted my spirits.
We made some wonderful memories together which I will cherish for a lifetime, and the exhaustion when I got back home was worth it a million times over.
We got back from Disney and the following weekend Ollie and I stayed at The Grand in Brighton for a night which was one of Ollie’s birthday pressies from me. Although I was tired, I loved having this to look forwards to during the come down from Disney!
We were really lucky with the weather and had a lovely couple of days by the coast. We went on the BA i360, had time in the arcades, on the pier and along the front.
Hospital appointments continued to be relentless throughout the year, but I’ve continuously tried to focus on the positives that I’ve done this year (although that’s far easier said than done!).
In August, Thea turned 30 and I really enjoyed celebrating with her. As most of you know, Thea suffers from EDS too although, like everyone, it effects us slightly differently. Thea has been such a great support to me throughout everything despite what she is facing herself and Thea had the best news this year that her and Jakob are expecting baby Seger in April 2020! Finding out was honestly one of the highlights of my year as if anyone deserves some positivity, it’s Thea!
In August, to celebrate our 6 month anniversary, Ollie and I went to see Book of Mormon. Nights out like this take a bit more planning with my wheelchair etc, but we got a cab up to London and my Dad picked us up afterwards so it worked out perfectly, and it was so lovely to have a ‘date night’ before I was due to go into hospital to have another port-a-Cath inserted. This surgery got cancelled on the day, and I can’t express how difficult that is to cope with, especially as it could have been prevented as my notes weren’t read so the team weren’t prepared for the complexity and risk associated with my case.
At the end of August, after everything I had been through, my Mum and I had a couple of days away with Jeffrey in a little cottage in Lincoln. This was lovely as we were very secluded, had a hot tub, and had some gorgeous local country parks and walks which Jeffrey adored! I also got to catch up with a good friend, Rory, whilst I was there which was really lovely.
I finally was admitted to hospital on the 4th September to have a new port-a-Cath inserted. As you all know, I was extremely apprehensive about the procedure after my previous port nearly killing me due to it getting septic. Still, I kept positive that I was extremely unlucky, with the surgeon telling me the statistics of infection in a port is 1 in 100, and he’d ‘never had one that had got infected straight away’. I feel like he tempted my fate by saying this knowing what happened later that month!
The weekend after my surgery, my Mum and I took Jeffrey to a Dog A.I.D training weekend. Throughout the year I’ve been working on Jeffrey’s assistance dog training when I can, but due to my relentless ill health this year we haven’t progressed as much as I’d have liked to. Still, it’s a focus when I feel well enough and a goal to work towards to get Jeffrey fully qualified. The weekend was lovely, meeting other clients and dogs in a similar position to Jeffrey and I, and realising the dogs aren’t robots and I can’t be so harsh on myself when training. It was also lovely to see Ruth and Willow.
In mid September, Ollie, his parents and I all went to Tenerife for Jon’s (Ollie’s Dad’s) 60th birthday. Despite still having to deal with my stoma, sickness and wheelchair etc, it was so lovely to have a week together in the sun away from hospital appointments, with no where to be at any particular time. We spent the week relaxing by the pool, playing games, shopping and enjoying the sunshine. I feel so insanely lucky to have Ollie’s family as my second family, who accept me as I am with my illnesses etc and are only ever too willing to help out and push the wheelchair etc. I’m so grateful to have them all in my life and I love them all so much.
Despite having a lovely week together, my ill health can’t give me a break for 5 minutes, and on the Wednesday evening whilst we were away I fell quite unwell. We were on the verge of seeking medical help, but I was eager not to ruin the holiday and just kept putting my symptoms down to the heat, dehydration, exhaustion etc. However, on the Saturday evening that we arrived home, my condition became critical again and I was blue lighted back into resus with what was confirmed to be sepsis from my port-a-cath I had inserted only two and a half weeks earlier.
I was gutted, and came back to reality with the biggest bang going from being away in Tenerife, back to emergency surgery and another three week admission.
It’s insanely scary how quickly my health can deteriorate and I’m only just so grateful that we made it home before medical intervention became an emergency. Coming home from hospital (yet again) led to another very tough recovery and left me with yet another horrifically scary situation to mentally come to terms with.
Fortunately, I got home in time for Jeffrey’s 3rd birthday and we had a little party with a few of his doggy and human friends to celebrate. I think being unwell also teaches you even more to make the most of the better times and celebrate any little thing, and as you all know Jeffrey is my little furry human who keeps me going through the rough times.
Over the course of the year my gastro symptoms have deteriorated resulting in a firm diagnosis of severe Gastroparesis, which now means if I eat orally I vomit and I also struggle to keep my medications down too. After eating I get severe bloating and extreme pain which I struggle to control even with opiates. I have to inject myself with potent anti-emetics to keep any food down, but these medications have now started to have a detrimental impact on my kidneys, and so, even though the effectiveness of them is decreasing, I have to ration when I use them.
This meant that my nutritional status was getting increasingly poorer, which led to the decision to insert a nasal-jejunal (NJ) tube. This goes up to my nose and down into my small bowel through which I receive my feed, fluids and all of my medications. Mentally this is insanely taxing; I’m very self conscious of having a tube stuck to my face, but also frequently missing out on social events or not being able to participate in things due to not being able to eat is really difficult. It also didn’t help that the tube was sited the day before my birthday (happy birthday to me!!).
Despite this and everything else going on, I was utterly spoilt for my 23rd birthday and it was made as special as it could be given the circumstances. I had wonderful presents from my parents, Ollie took me to the zoo and adopted me a Zebra, we went out for a lovely family meal (despite me throwing up) and Ollie surprised me and took me to see Waitress!
I’m so grateful, my heart was so full and I appreciate everyone’s efforts so much, particularly Ollie’s who put so very much effort into the day and really made it so memorable.
As a gift to Ollie to thank him for his continued support (particularly throughout my hospital admissions), I treated him to a long weekend away in a little cottage in Suffolk. It was very rural away from the rush of everyday life, and we took Jeffrey with us. It was so lovely just having time to ourselves, and, of course, we had a hot tub!! Jeffrey had so much fun on the beach and there was a beautiful National Trust park nearby where we went on a gorgeous walk. My hospital appointments have been absolutely relentless throughout the year, that the good times are about making memories together and that is exactly what we did!
Despite having to go into hospital for a gynae procedure at the end of November, I made a concerted effort this year to organise as many ‘Christmassy’ things as possible leading up to the big day to try to help get myself in the spirit. It’s so difficult being quite isolated at the moment due to my illness that I don’t have a workplace etc to help get me Christmassy, so I did everything I could.
I went to see a G4 Christmas concert with Ollie and his parents, Ollie and I took Jeffrey to see Santa Paws as well as going to Christmas at Kew, the Palladium panto with my family, and away for a night to the Brussels Christmas markets.
Just before Christmas I spent some time with dear friends, having Thea and Jakob to visit which was so lovey, as well as a Christmassy day with Rosie, watching festive films and exchanging our pressies! Despite not knowing Rosie for very long, we have just clicked and I’m so lucky to have a best friend in her who loves and accepts me just as I am. I’m so excited for all we have to plan for the new year together!
Christmas with family was lovely, albeit absolutely exhausting. Christmas Day was with my parents, sister, Nan, Jeffrey and I and then on Boxing Day we had my Dad’s family come to visit. I injected myself and tried to eat on Christmas Day, although I really paid for that the following day, and I honestly feel like I could sleep for a week after it all!
Whilst I’ve tried to focus on the positives of this year (of which there have been many) and the memories I’ve made, it has honestly been the toughest, scariest year of my life. The thought of how lucky I am to still be here really lingers with me and puts into perspective how much the good times need to be appreciated as my body is so unpredictable.
I cannot thank everyone who has been there for me this year enough, as I truly wouldn’t have got through the year without you. Your love, messages of support, visits, gifts, cards, kindness and just understanding means more to me than you’ll every know, and really makes such a difference to my life.
I struggle to make New Years resolutions as the unpredictability of my body often makes them difficult to fulfil. If I had my way I’d be back at Cambridge now, not spending over a quarter of the year admitted to hospital and having numerous surgeries. However, going into 2020, a new century, I’d like to…
1) Continue to make the most of the good times. The memories I make on the good days make the bad days a lot more bearable.
2) Not say things like ‘we must meet up’ but instead organise something and get plans in place (with the understanding they may not be able to be kept if my body decides against it). Life’s too short not to.
3) As difficult as it is, try to accept the things I can’t change. Surgeries will need to take place, I have the implications of chronic illnesses to deal with, but I need to keep the faith that I have the strength to get through these things. It’s okay to get upset as long as I pick myself back up again.
4) As a ‘normal’ resolution, I’d like to lose weight. However, a lot of this is down to my immobility, gastroparesis, various medications and feed. Still, I’ll do everything in my power to do so when I am able.
I can’t even express how glad I am to see the back of 2019, however, I will take with me the memories made and cherish those of you who got me through the days I never thought I’d survive the 24 hours of.
I wish you all the happiest of New Years and thank you again for your love and support this year with my blog and otherwise, it means more to me than you’ll ever know.