Absence.

Sorry for the radio silence over the last couple of weeks, but the truth is I’ve been sinking.

There’s only so much a person can cope with, or so strong a person can be before they crumble. I’ve taught myself though that that’s okay, I’ve just got to dry my tears, pick myself up and carry on when I’m able to; I’ve done it before, so I hope I can do it again.

I don’t even know where to start explaining what’s been going on over the last couple of weeks, or to express just how relentless things have been. My vomiting has been horrific, and pain pretty bad too. I had an endoscopy the week before last and an endoflip test to asses the function of my pyloric sphincter (which enables the emptying of my stomach). Unfortunately, it was found to be utterly paralysed and so I was given Botox into it and my NJ tube was also changed. However, the Botox has had no impact, and if anything, my pain has been worse since. My vomiting has been happening daily, even if I haven’t eaten anything orally.

Aswell as this, one of my carers suddenly left. This was difficult because there wasn’t even a goodbye, and I’d had her for quite a long time. It’s so hard for so many reasons needing to have carers, and losing someone that I trusted so much and spent so much time with has been so upsetting, particularly given the way it happened. Trying to find carers that can cover my hours and meet my needs has been far from easy over the last few years, and starting afresh with a new carer is a really challenging time too. I’ve been fortunate that I have one new carer who has started last week whom I’ve clicked with and is fortunately settling in to the role so well, but I’ve still been left without all my hours covered for the time being which is an added stress.

One thing that I was looking forwards to this week was my ‘Smart Wheels’ being delivered. These are the powered wheels for my wheelchair that I have waited for for around 8 months after having to appeal for funding etc. However, when they arrived on Wednesday, they were faulty. I can’t even put into words how disappointed I was after planning taking them to different places and looking forwards to hopefully having a bit more independence being able to propel myself. It ended up that they had to be taken back by the rep, and I have to wait to hear from the factory as to when they’ll be ready again when we’ll attempt another hand over of them.

With everything going on and my symptoms also being so relentless, I’ve just felt so distant and isolated with no motivation to do anything whatsoever. I really enjoy things such as blogging and also writing to my pen-pals, but I’ve really struggled to bring myself to do anything. I try to keep hope that things will get better, but I wake up and every new day is the same as the last.

There is a new week ahead and I’m trying my best to go into it with a more positive mindset, but we shall see what each day brings. I’m just so grateful, as always, for my Mum being my absolute rock throughout this all, the love of Jeffrey and support of Ollie and my other friends and family; it is because of you that I keep fighting.

Same Old.

I told myself this year I was going to try to accept my health issues more and live alongside them. I was going to have a better year health wise, not let it get in the way of life more; this lasted a whole 4 days. Yep, you heard correctly. 4 days.

Last weekend was due to be a chilled one, I had nothing organised, so Ollie and I decided to spend it at his house. I was due to stay round from Friday until Sunday, watch some TV, relax and visit some of Ollie’s family.

This was all going to plan until on Saturday night when I injected myself and had a little something to eat. Nothing huge, but I then proceeded to be violently sick. It was relentless, and to such a degree that I threw up a huge length of my NJ tube which coiled out of my mouth and was making me choke as well as constantly irritating my gag reflex so making me sick further.

With the tube hanging out of my mouth, we had no choice but to go to A&E. Ollie’s Mum and Ollie took me, and my parents met us there. There was a 6 hour wait for a doctor, but because of the state I was in, the triage nurse had to remove my tube. When I saw the doctor, he planned for an on-call doctor to come in the following day to replace my tube, so I went home and with very little sleep, my Mum and I returned on Sunday morning to find that no one at the hospital was aware of my case or the fact that I’d been told to return. I was very dehydrated and was also unable to keep my medications down, and so they tried (and failed) to cannulate me, until eventually we got a cannula in which I had my meds through, but it tissued before I was able to have any fluids.

The A&E consultant was adamant that I needed to be admitted, but I was adamant that I wasn’t! I appreciate all the issues I was having, but the risk of infection whilst I’m in hospital is so high, and they’d already tried (and failed) to cannulate me with ultrasound so they wasn’t going to have any more luck on the ward. My Mum and I spent a further 10 hours in A&E on Sunday, and with no one to replace my tube my Dad came to collect us in the evening. My condition deteriorated and I went into withdrawal from some of my meds that I was no longer getting down, and so I had to go into ambulatory care on Monday for IV meds, where there was STILL no one who could do my tube!

Finally, on Tuesday morning, after more IV meds in ambulatory care, there was someone able to replace my tube. Having an NJ tube isn’t easy, but at the same time this period of time without it showed me just how much my body needs it at the moment for medication, feed and fluid.

It was fortunate that I had an appointment with my gastro consultant on Wednesday which my Mum came with me to. The gastro is disagreeing with the second opinion I got, and still wants me to have the G-POEM surgery. However, we decided that he is going to do an urgent endoscopy on Tuesday, during which he is going to do an Endoflip test. This will take various measurements of the pressure of my sphincter in my stomach; if it shows it’s not working correctly, I am able to try Botox. If it shows the problem isn’t with my sphincter but is in another area of my stomach, then the Botox in my sphincter wouldn’t be worth trying.

I’m just hoping we find something that helps as having an NJ tube isn’t ideal, as has been proven this week. I feel totally done with everything after this past week and it’s only the first week of the year. I’m just grateful for Ollie and his Mum for being so understanding and taking me to the hospital, and my Mum for being there with me throughout it all – being my absolute rock, as always.

I’m so fed up of my body being so unpredictable and constantly letting me new down; Can I please have a new one?

New Years.

I have really mixed emotions on the turn of a new year, and to be honest I find it a really difficult time.

The idea that going from the 31/12 to the 01/01 is a new year is such an arbitrary thing. It’s a time I wish that a lot of things would change, but in reality it’s just the turn of a new day, like any other day of the year. I feel like I read people’s end of year social media posts highlighting their achievements which I don’t resent them for even for a minute, but when I look back at my year where, achievement wise, all I ultimately managed to do was survive, I find it so difficult.

I’d love to be posting that I’d graduated from Cambridge and working in medical research, that I’d brought a house or other things that healthy 20-something year olds are able to do; as much as I long to finish my degree and be working in the scientific industry more than anything else in the world, the truth is my ill health has been so relentless I haven’t been able to. This isn’t through choice, but something taken entirely from my control.

I know I shouldn’t compare myself to others, particularly when it’s comparing my reality to someone else’s ‘highlight reel’, but that’s far easier said than done. Myself and my close friends and family are the only ones who truly know what I battle on a daily basis and what my circumstances really are like, and so simply surviving this year really is a huge accomplishment for me.

It doesn’t get any easier, as with it being a new year, it’s a time when, as well as looking back, people also make resolutions for the 12 months ahead. With my body being so unreliable, so much being out of my control and realistically nothing drastically changing overnight, I’m unable to make the goals I’d like to without knowing I’d just be disappointed when, due to no fault of my own, I hadn’t met them.

New Years also fills me with anxiety, as whilst I try my utmost to be positive (although this can be far easier said than done), I start to think that I just couldn’t survive another year like the last. I couldn’t face the thought of the sheer panic when my health deteriorates and the future is uncertain, the thought of lengthy hospital admissions, relentless surgeries, the agonising wait for an ambulance when my condition becomes critical… these are all things that I just can’t think about.

2019 had it’s ups but it also had huge downs that have had a lasting impact both physically and mentally. I’d like to think that 2020 will be my year, one of good health but that’s something that’s so unrealistic so I’m just hoping for better health. Whilst some people are able to go out and celebrate New Years Eve, who had a great year and think of new year as a fresh start when things will change, that’s fine, but it’s also fine to find this a difficult time of year, as I do. Despite everything, I hope that the 366 days of this year are as happy and healthy as possible, and whenever you’re struggling try to have faith that there are better days ahead.

“Hope is not wishful thinking. Hope is the audacity to believe that after everything you have been through, there is more ahead of you. It’s the courage to trust that as long as you’re still breathing, you have not missed out on what was meant for you.”

2019.

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.

Christmas.

Christmas is a time of year I have always loved, but since being unwell it is a time of year that comes with it’s own challenges.

Firstly, let’s talk energy levels. Christmas is a busy time; for me it’s usually cramming in hospital appointments before the break, ensuring I have enough feeding, stoma and catheter supplies, ensuring all prescriptions are ordered that I need to and still being ill on-top of buying and wrapping presents, writing and sending cards, helping decorate the house etc. Of course I can and do have help with Christmas preparations, but I like to do at least some of it myself or it makes getting into the Christmas spirit even harder than it is already.

However, before I’ve even done anything, I am exhausted. I’m not just talking tired like you may be if you’ve worked a long day or had to get up early, I’m talking chronic, debilitating fatigue. My joints feel like they have weights attached to them, some days I’m physically unable to get out of bed and the days where I do the exhaustion and brain fog is horrendous. This makes trying to participate in Christmas preparations so difficult. It’s really hard as I resent (so very much) what I can’t do. This year my Mum got the Christmas tree down for us to decorate together, but I was so exhausted I fell asleep on the sofa and missed out on doing it – it’s so insanely frustrating and may seem pathetic to those on the outside who don’t understand. These little things really are the big things in my life which mean a lot to me!

Missing out on activities such as decorating the house makes it really difficult to get into the Christmas mood, and the season can so easily come and go without getting any enjoyment out of it. This leads onto my second difficulty of getting into the Christmas spirit which is not having a lot of things that ‘healthy’ people do; I don’t have a Christmas party, I don’t have a works secret Santa and I find it so difficult to hear about others doing these activities which I should also be doing. I should be able to work and I should have the Christmas celebrations with the workplace like healthy people do.

I don’t begrudge others even for a second for doing these things, it just makes me resent even more what I’m unable to do. I hate myself for it, as I really want to hear about what other people have been doing, but I just find myself shutting off or wanting to change the subject as it hurts me so much.

I make a concerted effort to organise and do as many ‘Christmassy’ things as I can leading up to the big day as otherwise I could carry on spending all my time at hospital appointments and it seems the same as any other day of the year. Ollie and I went to Christmas at Kew which was lovely and also very accessible, and in addition to that as a family we all went to the Palladium to the pantomime.

I was also lucky enough to see G4’s Christmas concert with Ollie and his family, as well as Ollie and I going to the Christmas markets in Brussels.

These events totally wiped me out, but getting into the Christmas spirit whilst having quality family time is so worth it for me.

Obviously, another huge issue I have more so around Christmas time, is not really being able to eat. No one wants to be tube fed at the best of times, but around Christmas when there’s lots of nice food and treats around I am so desperate to be able to eat. Going out for meals and suchlike is also a huge social thing around the Christmas period too, and going and only being able to have a drink is miserable, but eating then being up all night being sick isn’t really ideal either.

I am lucky that I can even keep some food down on good days by giving myself intra-muscular Cyclizine injections (which sting insane amounts), but the effectiveness of these is decreasing as I’m now still sick and the injections just delay the vomiting a little while. I’d honestly give anything to be able to eat normally, even just for a day. To be able to sit down and eat Christmas dinner without the need to inject and then the subsequent vomiting and intense stomach pain would mean the world to me – something I took for granted until I was unwell and something I never imagined I wouldn’t be able to do.

Until you’re in a similar position to me and can’t eat, you don’t realise what a huge chunk of your life has gone, and this is even more prominent at Christmas time.

To be honest, now, I find a lot of Christmas overwhelming and exhausting. I try my best to participate in what I can, but then my body pays for it, whereas if I don’t participate it’ll pass me by and I’m isolating myself even more than I naturally already am.

Finally, whilst it is always an issue, at Christmas, the unpredictability of my body and illnesses can be even more of a problem than it is at other times of the year. It’s horrible having a huge build up to Christmas Day, then it being a ‘bad’ day with horrendous symptoms and missing out. Whilst some say it’s ‘just a day’ and it can be celebrated another day, it really isn’t to me. Of course that’s second best, but I want to be able to celebrate on the right day like everyone else is able to. I hate not knowing how I’m going to be from one day to the next, and one good day definitely doesn’t guarantee the next day to be good.

I think at Christmas time, I can’t compare myself to others. As difficult as it is, I can’t scroll through social media and compare my own day to other peoples’ ‘perfect’ Christmases. I also need to ensure I can get rest when I need to but most importantly, make the most of what I do have. This can sometimes be the most difficult thing to do when it feels like life is falling apart, but I have an amazing family and boyfriend, Jeffrey honestly keeps me going throughout everything and the good days allow me to make memories which I cling on to in order to get me through the bad days.

Anyway, I wish you all the most magical, happiest Christmas, cherish every moment, and here’s to hoping for a happy, healthy 2020 for us all. Thank you for your unfailing love and support – it means the absolute world to me.

“Merry Christmas and a Happy New Year” x

‘You Look Well’.

I know that sometimes people just don’t know what the right thing to say is when they see me. I’m never ‘well’; if they ask what’s wrong they’ll be there all day whilst I answer if they want the truth, but I’m often told, if I have the energy to do my hair or make up or have a carer help out with it, that I ‘look well’. Whilst I’m sure it’s said with the best intentions, I find this a really difficult comment to take. If they turned my body inside out, it would be a very different picture.

I could have just had an eight week admission, lost or gained weight due to my Gastroparesis, had a morning of being sick, had to self-catheterise, deal with my stoma bag and potential leaks, be riddled with pain, have fainted and relocated joints which have dislocated and cope with my tube feed whilst everyone eats around me, and then I’m told I ‘look well’. I feel like people really have no idea of what I and so many others go through, and just how invisible illnesses can be.

My stoma bag is hidden under my top, my scars are all under my clothes, and whilst I’ve now got a tube stuck to my face which makes things slightly more obvious, people just have no idea of what’s going on. Then when we see people and they tell me I ‘look well’ I feel so frustrated; I almost feel the need to have to justify just how unwell I have been or still am. Of course I have periods where my health is slightly better than others, and I try my best to be positive about things, but there isn’t really a way to sugar coat how I nearly died twice from sepsis this year and how much my illnesses impact my life.

I appreciate it really is hard to know what the correct thing to say may be, but I don’t think it’s always realised what a detrimental impact some comments can unintentionally make. It must be tough for even the people with the greatest intentions to converse with the chronically ill, as it may feel unnatural to make conversation with those who are forced into a particular lifestyle due to being relentlessly unwell.

Honestly, from the bottom of my heart, I know that when I’m told I ‘look well’, the speaker is only trying to be nice. However, any truthful replies I could give such as ‘Thanks, but I’m really not feeling great, I’ve been throwing up all afternoon’ makes me seem as though I’m being ungrateful and constantly negative.

To be honest, I don’t know what a satisfactory response to this comment may be, I usually just say thank you and try to change the subject. Even if I ‘look well’, I can assure you that couldn’t be further from the truth…

Medical ID for EDS and Other Conditions.

Whilst I usually have someone with me, be it a carer, family member or friend, having some sort of medical ID had been suggested to me by multiple consultants. It has been something I’ve been meaning to do for so long, and as my medical issues have been getting increasingly complex, for peace of mind, I finally got round to sorting it out.

What if I collapse when I’m out and no one knows my background? What if I’m taken for a MRI scan with no one knowing my sacral nerve stimulator isn’t MRI compatible? What if people transfer me without knowing about my connective tissue issues? Having this medical ID bracelet really alleviates so many of my worries when I’m out and about, particularly with friends or new (& changing) carers.

I got a bracelet from American Medical ID, an amazing company with a huge selection of different forms of ID. There are a variety of reasons as to why people choose/ need to wear some form of Medical ID jewellery, some of which are listed in this article.

I chose a silver medical alert bracelet because I love the fact that, to anyone who doesn’t know, it just looks like a normal bracelet. I hate standing out because of my medical issues and this bracelet doesn’t make me feel as though I do that.

I was able to have both sides of my bracelet engraved, so I took a while to decide what I felt were the most vital pieces of information to go on it. Here is an extensive guide to help you choose what to engrave and how to make the most of the space.

I could have three lines on each side, and so on the front I had:

‘Ella Hollis

EDS (hEDS)

POTS’

And on the back I had;

‘Sacral Nerve Stimulator

No MRI Scans

ICE CALL; (my Mum’s number)’.

I absolutely love the emergency ID bracelet; it arrived in a little pouch to keep it from any scratches etc, and I was able to order charms to attach to it, and so I selected a St. Christopher charm. Obviously, the characters that can fit on the bracelet are limited, and so I also chose to also have an Emergency ID Card.

This is a card which can be kept in my purse etc., and includes space for personal information, two emergency contacts, doctor’s information, medical conditions, allergies, medications and a space for other information. This, for me, perfectly complements my bracelet as I can put more in-depth information in the card incase anything additional is required beyond what I have on my bracelet.

The bracelet comes in different lengths so you can have it to fit your individual wrist, and it is such great quality. To those who are unaware, it blends in with my other jewellery, making me feel no different to anyone else. However, I feel so much safer with being out and about with so many different people (carers etc) as I know the vital information about my medical conditions can be accessed should a medical emergency arise.

I’m so grateful to American Medical ID for their advise throughout the process of me choosing my medical ID, deciding what to have engraved etc. Now I have more confidence and peace of mind when leaving the house with my complex medical history.

Weekend Break.

The weekend before last, Ollie, Jeffrey and I had a long weekend near Southwold which I’d booked when I came out of hospital to thank Ollie for his support, but also for a chance to get away from everyday life.

We left home on Friday lunchtime, heading to our little cottage which was on a farm and was absolutely gorgeous. It was very rural but that’s just what I needed; a break in the middle of nowhere, separated from everything. I so wish I could have also had a break from my illnesses, but we all know that’s not possible. It was amazing to have a few days with no set time to have to get up, no appointments to be rushing back and forth to and having a break from carers.

The Friday when we arrived we unpacked a few bits, and went straight for a dip in the hot tub. Whilst I find it difficult to get in and out, the warm water on my joints feels amazing. It was lovely for us to both relax in there whilst Jeffrey explored the grounds, trying to find squirrels to chase! I decided for the weekend that I was going to try to inject IM Cyclizine to hopefully keep some food down rather than relying totally on feeds as I was on holiday – the keeping food down bit didn’t really happen but it was lovely to enjoy meals together (whilst they lasted)!

As we were rural, no take away restaurants delivered to our cottage, so the three of us drove out to the closest take away to get our dinner, got into our PJs and enjoyed it in the cottage (as eating out is difficult with my sickness at the moment). We got an early night as we were all quite tired, and had a good nights sleep before our first full day – a visit to Southwold.

Southwold was absolutely gorgeous. There were areas of cobbles and some of the entrances to shops were small so it wasn’t the easiest place for the wheelchair, but it also wasn’t the worst we had been to and we managed to access everywhere we went to. We found a gorgeous coffee shop where we stopped for a drink in between looking around the shops, and they did homemade doggy ice cream which Jeffrey absolutely adored.

After looking around the quaint shops which were so lovely and unique, we decided to go to the pier and the beach. The pier wasn’t overly large, but it had an arcade in it which Ollie and I had a go on a few of the machines in. We then walked right down to the end of the pier and the view was gorgeous – we were so lucky with the weather as, despite it being cold, it didn’t rain and we were able to all wrap up warm.

After finishing on the pier, we walked down to the beach. Obviously wheelchairs and sand aren’t the best combination, but we found an empty section of beach which had a ramp down to it, so Ollie was able to push me down then we lifted my chair onto the sand where I sat whilst we played with Jeffrey. Jeff absolutely loves the beach, running back and forth between Ollie and I and digging his way to Australia… it was so lovely to see the pure joy on his face!

On our way back to the cottage we stopped off at Co-Op and brought some food to cook for dinner. We (obviously) had another chill in the hot tub before getting into our PJs and cooking together whilst I crushed my tablets and prepared my medications etc.

On the Sunday we wanted to find a nice walk for Jeffrey, and so we ended up going to National Trust’s Dunwich Heath; It was absolutely stunning. We borrowed one of the electric chairs which made it so much easier for me to get over the uneven ground. Ollie and I walked around some of the set pathways with Jeffrey having a wonderful time running everywhere and taking in all of the sounds and smells. It was such a gorgeous walk and so tranquil too.

Afterwards, we went for a Sunday lunch in a local pub, before another dip in the hot tub and packing up the cottage ready to leave fairly early the following morning.

We honestly had the loveliest weekend together; just having quality time and being away from the rush of everyday life and hospital appointments etc. I find it difficult still having to deal with my tube and stoma etc whilst I’m away, but I’m trying my best to be grateful for what we did have, and we made memories I’ll treasure forever…

Second Opinion.

I find chronic illnesses so hard to deal with for countless reasons, and sometimes decisions I have to make with regards to treatment etc that will have a lasting impact on my body are even harder to deal with.

Have I made the right decision? Will I regret my choices? What if I’d decided to go for something else?

As I blogged about a couple of weeks ago, I’ve been really unsure about the G-POEM surgery for my Gastroparesis that I have been offered at King’s, and so a deterioration in my symptoms whilst I’m deciding has meant I’ve had to be fed enterally via an NJ tube that goes up my nose and down all the way into my bowel.

I have had such concerns about the G-POEM procedure that my parents and I decided to get a second opinion on the situation privately, out of pure desperation for help but also to be sure we’re making the right decision as we’ve had such conflicting advice about the G-POEM. I went to the London Clinic to see Dr Gabe who also works at St Mark’s in the Intestinal Failure Unit, and we had such a lengthy discussion about my (very) complex history. He came to the same conclusion as I’d been thinking, that the G-POEM isn’t the best way forwards for me at the moment for various reasons and it’d most likely lead to other problems. This left me with mixed emotions as, I’d hoped that the surgery would enable me to eat normally again without the need for potent injections and still vomiting etc, but at the same time I was extremely cautious that I didn’t want to have something done to cause yet more problems.

Dr Gabe said that, ideally, he’d like to admit me and try to rationalise my medications, particularly focusing on cutting out/ swapping those which have the greatest impact on my gut function. He would then trial different feeds until we can find one that I can tolerate at a sufficient rate when a surgical tube could be considered as he doesn’t see the stomach issues getting any better. However, even if we could get this planned admission covered on our private health insurance, Dr Gabe said I couldn’t be managed privately as, due to the complexity of the case, he would need the back up of a multidisciplinary team on the NHS to manage me.

However, whilst it’s my body and whatever treatment I decide to go through is my choice, deciding not to have the G-POEM procedure for now has left me in a very awkward situation. This is because, whilst Dr Gabe is happy to take my case on, I’d have to wait for an NHS referral for the intestinal failure unit at St Mark’s to go through, leaving me with no support in the meantime. My consultant at King’s see’s the only way forwards as the G-POEM and, whilst I’ve sent him an email explaining my decision, I doubt he is going to want to take my care forwards now I’ve gone against his plan as he seemed to get upset with me when I was unsure about it to begin with.

To be honest, life is just so difficult, and situations such as these make me resent my malfunctioning body even more than usual. Still, I have to go with my gut feeling (although who would trust my gut with the state it’s in?!) and not have this surgery, at least for now. I’m just trying to have some faith that somehow, things will work out…

Ostomy Support Bears.

I was kindly gifted an Ostomy Support Bear as I was so eager to work with and share the story of Kelly Moss, an absolutely amazing lady running an equally wonderful project.

On 28th January 2019, Kelly started Ostomy Support Bears to raise awareness and reduce the stigma around having an Ostomy. An ostomy is a stoma or an opening made during a surgery such as an ileostomy, where part of the small bowel is diverted through an opening in the tummy which requires a bag to be attached over it. Kelly’s bears are made with a stoma and have a bag attached which is absolutely amazing for ostomates of all ages, to have a bear that has the same appliance as them.

I really struggled when I first had a stoma; I couldn’t face the thought of being so ‘different’. I didn’t want people to know, I didn’t want anyone to see it, but Kelly normalising stomas through her work with Ostomy Support Bears really helps patients such as myself come to terms with needing to have and living with a stoma.

I think this project is even more special as Kelly understands herself first hand what going through such a life changing surgery such as the formation of a stoma is like. Kelly has struggled with Crohn’s disease for years herself and has had an ostomy since 1998. After further bouts of severe ill health and subsequent surgeries, she started up Ostomy Support Bears as a small initiative to give her a purpose which is something that illness strips us of.

The project started just in Australia, but seven months later over 400 bears have been sent worldwide, putting smiles on faces, raising awareness, educating people and reducing the stigma that comes with having a stoma bag. It helps to prove that a bag is nothing to be ashamed of or embarrassed about.

This project is run entirely through donations on Kelly’s ‘Go Fundme’ page, the link for which can be found below.

https://www.gofundme.com/ostomy-support-bears?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_campmgmt_m

The bears are reasonably priced, they are shipped worldwide and they make a perfect present for someone with a stoma. Kelly makes no profit from this project apart from donations which are kindly made, and that money goes back into making these wonderful bears.

If anyone is interested in these bears, please visit Kelly’s Facebook or Instagram page or if you are able to, please donate to this wonderful project which is helping patients, such as myself, come to terms with life changing operations.