Silver Linings.

I blog regularly about my struggles but feel like I very rarely mention the positives that arise from my difficult situation. I get so caught up in hospital admissions, surgeries, constantly taking medications and not being able to do things that would usually be taken for granted that I don’t often get the chance to appreciate the silver linings to my very medicalised life. It’s all so easy to think about the university life I’m missing out on and the fact I should be graduating this month, the fact that I spend extended periods of time in hospital so miss out on ‘normal life’ and the fact I have to use a wheelchair, but the truth is my illness has brought some positives into my life which I wouldn’t otherwise have which I really should focus on, but it can be difficult to do that.

1. Friendships

Without suffering with my ill-health, there are many friendships that I wouldn’t otherwise have. I met my best friend through us both having the same condition, and whilst I wish I could take Thea’s suffering away from her, us both being in similar situations mean we understand each other like no one else and have such an amazing bond because of that.

Thea’s strength truly is admirable, and if I could be half as strong as her I would be happy. Despite what Thea goes through, she is always there for me and I wouldn’t cope without her, particularly throughout my most recent hospital admission.

I’ve also met some other amazing people due to hospital admissions etc because of being unwell. One such friend is Doris whom I recently blogged about, as well as my friend Emma from a POTS support group, and meeting people such as them in similar situations to myself gives me strength seeing how they cope with all life has thrown at them.

2. Strength

Whilst I wish I could be stronger than I am, particularly when I compare myself to other people, my illnesses have meant I’ve found greater strength than I would otherwise have. Unfortunately, being poorly means that a lot of things end up being out of my control; periods of time spent in hospital, side effects of medications, having to use a wheelchair etc, but there is no choice but to cope with these difficult times and I have come out the other side stronger for it.

3. Appreciation

Having my independence taken away from me and my health problems dictating what I can and can’t do makes me appreciate everything so much more. Just recently I spent eight weeks in hospital, most of which I was bed-bound for, and so since I was discharged I have an increased appreciation for things that I otherwise may have not even thought about. Fresh air, getting to the woods with Jeffrey and having a bath are just a few of the things that, since my discharge, I have been so very grateful for whereas, for healthy people, they are just things experienced in every day life without a second thought.

I also have a greater appreciation for the people around me. I’ve always been extremely grateful for my family, but since I’ve been poorly they’ve gone above and beyond their roles to support me and make me feel like I’m not facing my health issues alone. I’m also appreciative for my friends who keep me going, and for the NHS staff who constantly support me, and who’s treatment and efforts mean I can live the best life possible given the circumstances.

It’s very true that being constantly positive whilst living with chronic illness is so unrealistic, but keeping a positive outlook wherever possible is vital to being able to cope long term. Chronic illness truly has opened my eyes to the blessings in my life which, in itself, I am so very appreciative for.

Welcome Home.

My first week at home has been an utter whirlwind.

The thing that hit me when I first came home was the weakness and de-conditioning caused by being bed-bound for the entirety of my eight week admission. Absolutely EVERYTHING, from transferring, to moving, to holding things has been an absolutely huge effort. I find this one of the most frustrating things in the world, as I already have a reduced independence and mobility, yet when I can do even less than my ‘baseline’ and can’t do simple tasks that I need to, I find it very hard to deal with.

Despite being home, I have a long road ahead in terms of re-building my strength, trying to reducing the frequency of my dislocations and getting back to where I was, but it’s a road I’ve got to pursue to get back to some normality. At the moment fatigue is also playing a huge role in my life but I’m hoping that too will improve in time as it is extremely debilitating.

My eating is still as bad as it was when I was in hospital. I can usually keep ‘junk’ food such as sweets down as they have basically dissolved in my mouth and the sugars are easily absorbed, but anything else and any substantial food or meal that I’ve eaten has made me very sick. I’m finding this really challenging as I really struggle with vomiting and find it so draining, but also food is one of life’s pleasures which I’m now missing out on, and with the way things are at the moment I can’t eat out, can’t have a take-away night and I really miss the taste of things. I’m back at the hospital on Monday to see my gastro consultant and the dietician again to see where we go from here and how much longer we leave it before we decide to intervene; I’ve exhausted meal replacement drinks without finding one that I can keep down, and with no nutrition in me I’m feeling increasingly weaker which isn’t aiding my recovery. When I first came home I also developed a UTI from having an indwelling catheter in for the entirety of the eight weeks of my admission, but having to take antibiotics on an empty stomach made me violently sick… I can’t win! Fortunately with stronger anti-emetics I’m keeping the antibiotics down, and so hope the UTI clears up soon as with all this going on I feel overwhelmed and feel like I have a hugely decreased ability to cope with my ileostomy.

However, there have been many positives since I’ve been discharged which I must focus on.

Firstly, I was reunited with Jeffrey. My fur baby is my world, spending basically all day, every day together with him being trained as my assistance dog, having eight weeks apart was so difficult. I cried tears of happiness when I saw him, and Jeffrey wee’d all over me with excitement (just what I wanted!), but being back together has been so lovely and he cheers me up immensely. He is such a little darling and, since I’ve been home, if I’m in a different room he has frequently come to check that I’m still here!

I’ve also been fortunate enough to have been spoilt by more beautiful cards, gifts and balloons; our friends and family have truly been our strength through what has been a very trying time. This was demonstrated further as, since the care agency haven’t been cooperative and only provided one day of care this week, our friends have come round to look after me. I can’t thank Deborah and Kate enough for coming round, keeping me company and caring for me; their friendship truly is invaluable and without their kindness I wouldn’t have been able to come home.

Of course things still aren’t easy – I’d give anything to be able to eat properly, to not constantly be sick and to have some energy but I need to remember how far I’ve come.

The absolute highlight of my week came yesterday when I was asked the most exciting question ever. My lovely friend Becka, who is recently engaged, asked me to be her bridesmaid! Of course the answer was instantly without a doubt yes; it’d be such an honour! This has made my week, month & year… it is the positive thing I so need in my life to look forward to and I just can’t wait. In the meantime we have lots to plan and having this focus is so wonderful.

Becka and I met at school, becoming particularly close in our physics lessons in the upper school which we got through together. We just clicked, staying in touch since and Becka has been so supportive and understanding throughout my health difficulties. I’m looking after her gorgeous son, Chester, today which I am also so excited about! Becka, thank you so much for asking me to be one of your bridesmaids; it is so kind of you and means more to me than I can put into words – I love you so very much.

The reality is that there are going to be good and bad days, but that’s life and I’ve got to grasp on to the positives; I’m home again, I’m with my family, I’m back to spending time with Jeffrey doing his training and I’m going to be bridesmaid for a beautiful bride which I absolutely cannot wait for.

Discharge Day!

Packing up what I have called home for the last eight weeks, I’m overcome with a huge range of emotions – after two months, countless crash calls, more tears cried than I thought possible, a week in intensive care, an NG tube and an ileostomy, my discharge day is FINALLY here!

Thinking back over this admission, things seem a real blur; I knew things wouldn’t be easy and I had a major operation to face, but nothing could have prepared me for what was to come and it was probably best I didn’t know what was around the corner.

Little did we know that the first cardiac arrest call that was put out when I stopped breathing after being taken into recovery would be the first of many, and the crash-call filled week in intensive care that was to follow had to be one of the scariest that my parents and I had to face. I wouldn’t have got through that time without having the 1:1 nurses, who in all my experience with the NHS have been the people I admire the most; the resilience and strength they constantly portrayed whilst working tirelessly to ensure my stability and comfort wherever possible was appreciated more than I was ever able to express to them.

With my health being as unpredictable as it had been, being moved to a ward was a hugely scary concept; I was leaving behind the crash team who had resuscitated me numerous times and the reassurance of so many specialists being on hand, but it’s a step that had to be taken and one of the first, biggest ones towards getting to the position I’m in today. I was moved to T9, a surgical gastroenterological ward; from this point on I was allocated a 1:1 Nursing Assistant to try to meet my care needs as, due to organisation of funding, I wasn’t able to have my usual carers whilst being admitted to the hospital.

Unfortunately, on the ward, the crash calls continued, I was still on full time oxygen and progress continued to be slow, often feeling like I was taking two steps forwards and three steps back. My stoma continued to retract (which was thought to be due to my EDS), I was still unable to keep any food down and when I got to the point where I’d lost 10% of my body weight since the ileostomy surgery, it was decided that I would need to have an NG Tube, via which I received the entirety of my nutrition when my body could tolerate it.

Days continued to merge into weeks, and friends I had made whilst in hospital were coming in after me and being discharged before me… it felt like my chance to go home would never come. The one person whom I met in hospital who touched my heart the most, and will always have a special place there, is Doris. Friendships truly are made when you least expect it, and being stuck opposite my grumpy face on T9 for an entire month, Doris got me through some of the darkest times and was there to celebrate the better times with me, constantly giving me strength and encouragement. Ever since Doris has been discharged, she has checked up on me every single day, and once I’m settled at home and more mobile, we are going to meet up for a much deserved lunch date.

There is something so special about our bond, as, as much as I wish I could take all of Doris’ suffering away, we have both had our lives turned upside down due to different chronic illnesses, and so we understand each other like no one else. The resilience that Doris portrayed day in, day out, despite all she was going through truly was admirable, and Doris, you gave me strength that I didn’t know I could have to get through some of the most difficult days of this admission.

As I spoke about extensively in my last blog post, a huge unexpected hurdle was put in my way when I was suddenly moved from T9 to T13 last Sunday after many weeks of familiarity on T9. The move was to another gastro ward, but since has been explained by the fact that T13 is more nutrition based than the surgical focus of T9, and my needs had shifted during my recovery, although there were many different excuses. As well as causing myself a lot of unnecessary distress, it also caused a lot of disruption to the 1:1 support I was receiving as it had all been established on T9. The move has made the last couple of weeks of my admission a lot more challenging than they needed to be, and since I’ve moved I haven’t had the same person twice for my 1:1 care which hasn’t been easy due to the complexity of my needs.

More than ever, during this admission, my Mum has been my absolute rock. I truly mean it when I say my Mum is the most selfless, thoughtful human being I’m fortunate enough to have in my life, and really is my absolute strength throughout everything. Day in, day out, over the past two months, my Mum has been at my bedside and got me through everything that was thrown my way. Whilst holding down her job, looking after my Nan and doing all other day to day tasks, my Mum has always put me first, being by my side every single step of the way, never making me feel like I was facing any of this alone nor that it’s a burden. There are days that I haven’t wanted to carry on, yet my Mum has worked, and continues to work, tirelessly to hold me together when I feel broken, and for it all I am so indebted to you and eternally grateful to have you.

I am also so appreciative for the support of all of our friends and family throughout this admission, and for every single card, present, message, phone call and visit; there are no words that are just to express my gratitude for every single thought and act of kindness which brightened up such a difficult extended period of time.

I’m beyond relieved to finally see the end of this admission; I’ve cried, I’ve been petrified, experienced every emotion inbetween and I’ve cried some more, but I’ve found strength even when I thought it impossible. The entirety of April and May have been spent with my life on hold in UCLH unsure if I’d ever get back to normality, yet here I am on my way home to Bexley at last, with Jeffrey there desperately awaiting the return of his Mummy.

The next chapter of my life will continue to be extremely hard, trying to find myself again whilst rebuilding my little world, getting back in to some sort of routine and attempting to adjust to living with Stewie the stoma. There are other operations ahead and my entire life to get back on track, but it is all with the mutual aim of getting back to Cambridge University where I long to be more than anywhere else on this planet.

Thank you again for everyone’s love, comfort and support; I couldn’t be this strong without you all. I also owe a huge thanks to the crash teams, nurses, nursing assistants, my surgical and medical teams, stoma specialist nurses and everyone else here who have gone above and beyond their jobs to help mend me physically and emotionally, and ultimately get me through one of the most difficult periods of my life… your efforts never went unnoticed and for all you have done I will be forever grateful. ♥

Anxiety.

Depression and anxiety have always been conditions that have reared their ugly heads when my physical health has been bad, but during this admission my anxiety has drastically worsened. I find this extremely hard to talk about, probably due to the taboo around mental health, but it’s a topic that I need to get my views ‘out there’ on.

Being in hospital, you have very little to focus on. I’ve been unable to get out of the ward, was unable to get out of bed at all, and so I’ve been lying in the same four walls with very little to occupy my mind with and very little I have the ability to concentrate on. With all this time to myself to mull over thoughts and feelings, I have become anxious about absolutely everything.

Will I have a nice nurse? Will I get my medication on time? What if I don’t have time to brush my teeth between now and when the Drs come? What if I don’t get woken in the morning for my medications? What if I have a nap but don’t wake up if someone comes around? What if my bag leaks?

A lot of these questions I have no control over and to be honest, they aren’t my responsibility, yet they go around and around in my head and I can’t help but stress over them. I feel like I’m doing other people’s jobs for them, but if I don’t and things don’t happen as I need them to then it is me who suffers or loses out because of it. Already struggling with the relentlessness of my ill-health, last Sunday at 8pm after all visitors had left, I was told that I had to move wards to T13. After being here for over six weeks I have accumulated lots of things, so with no visitors to help me pack up and unable to get out of bed myself, I phoned my Mum in tears of frustration. I was so nervous about the porters turning up and not being ready, so I got as much as I could into bags from what I could reach, and the rest of my belongings were bagged up by a Nursing Assistant into countless carrier bags so I had no clue where anything was.

I laid in bed and waited for the porters, checking time and time again that I had picked up everything. Finally, at half past midnight, the porters turned up to transfer me; exhausted, I had no energy to process what the move meant or how I would cope with it. I arrived and had a tiny bed space far from the window, making me feel so claustrophobic but I was so exhausted finally at about two am I couldn’t keep my eyes open any longer and fell asleep until I was woken for my five am medication.

The following day was when the reality of the move had hit; I left behind nurses who knew my health problems and the routine I needed to get certain medications on time, I had left behind a team of Nursing Assistants, most of whom had worked 1:1 with me and learnt to deal with my fainting and knew what help I needed due to the implications of my EDS and so I’d ultimately left behind my comfort zone but also where I felt safe. My first day here I was beside myself; I desperately tried to get moved back downstairs but with no joy. I’m 21 and my health problems consist of what most 21 year olds don’t even have to think about, and I couldn’t face going through the embarrassment of them with new members of staff on top of everything else I am dealing with… I was also promised continuity and this was yet another promise that was broken. I was missing medications as they came at the wrong time and when I asked the nurse why they were two hours late I was told ‘it is what it is’ and I felt like no one was bothered that things were going so wrong. I tried to discharge myself and tried to pull my NG tube out, but deep down I knew that I had to stay here with how my health currently is, and eventually my Mum managed to calm me down.

To try to help with the transition, I was allowed a Nursing Assistant from T9 to come up for the first couple of days, but again promises were broken when I was told I could have that in place for one more day, and T13 refused to send someone down to replace my Nursing Assistant and so it couldn’t happen and once again I was caught up in the logistics of hospital staffing which shouldn’t be my problem. I’ve been moved to a window bay which makes me feel less claustrophobic, and now I’ve got to get used to an entire new ward’s nurses, nursing assistants and routines which, with my additional health needs, is never easy… I hate having to be so beholden to so many people.

It’s just another thing to make the situation more difficult than it has to be, and as much as I’d like to end it all at the moment I have to keep going. My family are my strength and I’d be no where without them.

Relativity.

Things really are relentless. I know there are people worse off than me, I know there are people better off than me, but that doesn’t change what I’m going through, how I’m coping with it and how I feel about what I am facing. Everyone’s problems are relative to what they’ve been exposed to.

It’s a hard concept to understand how a headache or a cut thumb may seem like the end of the world to one person, whilst for another person to feel like that it could take for a cancer or a severe RTC or suchlike to be suffered. How challenging you perceive things thrown at you in life depends on your experiences, what you’ve been through or what you’ve supported others going through. As much as my patience is currently worn thin after spending five weeks in hospital and still being here, and as overwhelming as my frustration is, I still try to sympathise with others with what they’re dealing with despite how I compare their problems with mine, which is a thing I do too often. To me, I get no comfort from being told that there are people worse off than me; it just makes me feel as though my problems aren’t important just because in one persons opinion they are being undermined by what another person in a completely different situation is going through.

For me, at least, this is quite a difficult thing to do, as it’s so easy to wish yourself in other peoples shoes, but quite often everything going on in the other persons life isn’t known, and it’s not always as sunny as it seems. People are spending increasingly more time on social media where, for the majority of the time, only the positive parts of peoples lives are shown and so not a very realistic understanding is gained; peoples lives seem so wonderful on Instagram, but there is often so much more going on than what is visible through those little squares. People are so often fighting a battle that others know nothing about.

I feel like things have been relentless since my health began to decline some years ago now, but the deterioration has sped up over particular periods of time, as it has since the beginning of this admission. I am honestly scared to say it, but I don’t know what else can go wrong… however my life seems to take that as a challenge and find something else, this time being my stomach shutting down. In addition to that, daily life currently includes things such as my NG tube, an indwelling catheter, intermittent Oxygen and multiple, potent medications.

In addition to this, me being admitted and going through what I am doesn’t only impact me, but also impacts everyone around me. My parents have been here every single day, be that after work or for the whole day, they travel up no matter what, regardless of how tired they are or what else they have going on; This is all whilst they are holding down their own jobs, looking after my dog and caring for my Nan who also wants to visit whenever she can. My sister comes to visit when her shift work allows, and friends have been so kind to offer help, come to visit and send in thoughtful gifts.

I’m struggling, but it’s also not easy for those around me; my Mum’s witnessed numerous crash calls and me not wanting to go on just to name a few things. These are things my parents never imagined we would be facing, things I also imagined I would not be going through, but the truth is this is now our reality and we all have to cope with it. It doesn’t matter what other people think or what they’ve had to deal with, we all will deal with all that is thrown at us together as a family, for which I am so appreciative.

Hanging in there.

I am hanging in there… just about. That’s what everyone has been telling me to do but really there is no choice.

I had a conversation last week with a lady who told me that things can’t happen quickly so I’d need to ‘tough it out’ a couple more weeks, and I can’t count the number of times I’ve been told to ‘stick with it’ but I don’t think anyone realises what that involves. Being away from home, not getting enough sleep, being bed bound, having no control over so many things whilst constantly being unwell is extraordinarily difficult to deal with.

It’s been over a month now, my family are stretched between home and the hospital, I miss Jeffrey more than I can put into words and I just want to be back to ‘normality’; for instance I should have been going to the theatre with my Mum this evening and us both having to miss that is totally gutting for me as I’d been looking forward to it for so long. Since being admitted I’ve noticed a decline in my mental health, my ability to cope with what is thrown at me, and I’m spending increasingly more time in tears.

Since I’ve been unwell and interacted with other people in similar situations to myself through forums and support groups, I’ve seen many instances of peoples partners leaving them in their time of greatest need as they ‘can’t cope’ with what is going on. I always thought that Jack was different to that, but I was proved entirely wrong last week when he decided to split up with me whilst I was alone in the hospital, then left, went down in the lift to his new life. Not only could the timing not have been worse, but in addition to losing him I have also lost his family whom I always felt like I belonged with. Not hearing from any of them seemed like a void in my life, but one that, now I’ve had time to process, will be filled as I recover, get back to normality and back to socialising with the people again that have been there for me through the bad times as well as the good, not just a ‘fair weather’ companion.

I still have my NG tube and have feed via that if I can tolerate it. We have tried to increase the rate of feed but a tiny amount so I have more over the 20 hour period, but that caused me to be very sick and so we have had to reduce it back down to 35ml/hour. I am trying to eat when I can alongside that, but unfortunately the nausea and vomiting haven’t improved at all, meaning that I still bring up absolutely everything I consume which is draining beyond what I can put into words. I discussed the possibility of a PEG with my consultant as I am really struggling to cope with the NG tube, but she is completely against that idea at the moment.

I’d be so grateful for anyone’s experiences with a PEG as, like a lot of what I’m going through at the moment, this is new territory for my family and I and so any advice would be gratefully received.

The fainting has improved, and today for the first time since I came in over a month ago, using a slide board, I managed to transfer into my wheelchair. I was so proud of myself, it’s a little step but in the right direction. With all my attachments, my catheter and my feed, two healthcare assistants and my mum managed to push me over to see Doris, another lady in my bay who has been my strength throughout this admission. We were all so elated it was the most wonderful feeling in the world. I fainted transferring back into bed, but there’s an improvement and I’m so happy.

Things are still far from where I’d like them to be, and particularly today I’ve longed to go home, but I’ve just got to hang in there.

Artificial Feeding.

Numerous EDS sufferers have to rely on artificial feeding at some point in their journey, and since I’ve had an NG tube inserted this week, in addition to it being EDS Awareness Month, I decided to focus this weeks blog post on it.

Artificial nutrition is a medical intervention that allows an individual to continue to receive vital nutrition when they aren’t able to eat enough to meet their needs; this can happen for various reasons such as gastroparesis, inability to swallow or conditions such as inflammatory bowel disease.

There are two main types of artificial nutrition; Enteral Nutrition and Parenteral Nutrition. The main difference between these is that Enteral Nutrition is given via different types of tubes into the stomach or bowel, whereas Parental Nutrition is given into a vein. For me, TPN was considered which is a type of Pareneral Nutrition, but this was soon disregarded as, due to my health problems it was thought that would be more likely to encourage my stomach to shut down permanently. Therefore, the situation was reconsidered and the NG tube that was decided on and I have is a form of Enteral Nutrition, and so that’s what I’m going to focus on for the rest of this post.

I have had an Nasogastric (NG) tube inserted; this is a kind of nasoenteric feeding tube as it goes up my nose, through the back of my throat, down my oesophagus and into my stomach. Before the feed can be started, the position of the tube has to be confirmed. This is done by attaching a syringe to the end of the tube and withdrawing an aspirate. The PH of the fluid obtained is tested, and if it is less than 5.5 it is successfully in the stomach and feed can be commenced. However, in my case, absolutely no fluid could be drawn from the tube (probably because I haven’t kept any food down for a while), and so the position of the tube had to be checked using an x-ray.

Once the x-ray had been checked and the tube was definitely in the correct place my feed could be started; the two main methods of delivering the feed are ‘Bolus’ and ‘Continuous’.

  • Bolus – This is where the feed is given over 15-20 minutes via a syringe several times a day.
  • Continuous – This is where the entire feed is given at a certain rate over 8-24 hours via a pump.

At the moment, whilst in hospital, my feed is administered continuously. This was deemed the most suitable and also allows us to start by giving tiny amounts of feed over a longer period of time to reduce the chance of my stomach rejecting this too like it has done with food. The dietician devised a feeding regime for me, starting with 20mls/hour over 20 hours, with the hope that we can increase daily by 15mls/hour until we reach my target of 65mls/hour over 20 hours.

I have had my first 20 hour feed which was at 20 mls/hour, and I was only sick once so, although I haven’t seen my team or my dietician since, I think that’s quite positive. I’m nervous about increasing the rate today, but I’ll have to see how things go and have it reviewed if necessary. I’m allowing my stomach to rest for a couple of days, and then going to eat little bits alongside the feed to continue to try to increase my tolerance to food again.

Artificial nutrition is an odd conception as it’s medicalising something that shouldn’t be, but for many people for various reasons it has to be relied upon. If EDS hadn’t already shattered enough of my body the severity at which it’s impacting my stomach has drastically increased, but I remain hopeful that the feed will help to build my strength and at some point I’ll be able to start eating normally again. It’s been a tough few days having to accept and adapt to the tube feeding, but the support and love of my family have made that transition so much more bearable.

EDS Awareness Month.

Today, 1st May, marks the first day of Ehlers-Danlos Syndrome (EDS) awareness month, a condition, as most of you know, that is very close to my heart. EDS and conditions secondary to it have seen me in hospital, having to use a wheelchair, require major surgery, rely on multiple medications daily, have to intermit from uni and ultimately turn my life and the lives of my family upside down.

From EDS UK;

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. The stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.

I’m fortunate enough that I’m the only member of my family with this diagnosis, but that does pose the question of where it has come from? The hugely varied presentation of symptoms amongst us individuals with the same diagnosis was so evident to me when I attended the EDS/HMSA conference last year. For me, the affects of EDS include me having to use a wheelchair, fainting frequently, my bladder doesn’t work so I’m awaiting some type of surgery on that, my bowel doesn’t work which led to my ileostomy, my joints dislocate daily, my swallow function is impaired and since my operation my stomach has been rejecting all food so an NG tube is being considered. It’s fair to say that since I’ve had my EDS diagnosis it’s been a journey… a relentless one.

There may just be one diagnosis of Ehlers-Danlos in my family, but my whole family feel the impact of it.

The month of May aims to improve awareness and knowledge of Ehlers-Danlos Syndrome, in addition to raising vital funds. EDS is hugely underdiagnosed, which is where the zebra symbol originates from; in medicine, the term ‘zebra’ is used to refer to a rare disease and throughout medical school, students are taught, ‘when you hear the sound of hooves, think horses, not zebras’. This means that doctors learn to expect common conditions, and forget that zebras do exist, so getting a diagnosis and treatment for these rarer conditions such as EDS can be difficult.

There are many things that people can do to get involved in EDS awareness month. These include;

  • Using the awareness presentations on the EDS UK website to gain a better understanding of the condition and to share the knowledge with others.
  • Organise a fundraising event for EDS UK; fundraising packs can be requested from their website.
  • Volunteer for EDS UK in various roles that they have available. These include becoming an area coordinator, working in the office or helping test new information for the website before it is published.
  • Recycle your old stamps! I save them all year; it doesn’t take any time at all to cut or tear them from envelopes, save them up and post off to EDS UK, the address for which can be found on their website.

I long for the day where more individuals know about these conditions, more research has be done into them and ultimately a cure is found; EDS awareness month is a great opportunity to work towards this dream.

Admissions.

It’s not until I’m back admitted to hospital (which I am all too frequently) that I remember just how challenging it is.

I’m sure there are many people who cope with it better than I do and maybe it isn’t such a big deal, but being ill, being away from home, not able to see Jeffrey, being bed bound and trying to get my head around living with a stoma has been all too overwhelming, particularly over the last couple of days. I know I’m not in a state to go home and I still have a way to go, but I want to be back there and back to my ‘normality’ more than anything.

I’ve been in hospital for eighteen days now, the beginning of which was spent on Critical Care, and since on a surgical gastroenterological ward. My ileostomy is functioning, but as mentioned in my previous post, due to my EDS and scarring from my Crohn’s Disease it is retracting and is continuing to do so; this means that my stoma is now below the surface of my skin, so despite using various accessories to try to prevent them, I’m suffering persistent leaks where it’s not protruding into any bag. This is both distressing and frustrating as it makes the surrounding skin sore and break down even further.

The stoma nurses come daily Monday to Friday to try different techniques and continue educating me about living with an ileostomy – their support has been invaluable. My joint problems cause some difficulties, but I’m trying to make stoma care part of my normal routine. Once I’m in a position to be discharged, looking after it alone is going to be daunting but the joy of returning home will far outweigh that worry I’m sure.

My POTS and orthostatic intolerance continue to be a huge issue, made worse by the de-conditioning of being in bed meaning I’m in a vicious cycle. The physios now hoist me out and sit me in a reclined chair, their plan to increase the time I’m out and increase the inclination. Tilted back, with a few faints on the way, I can manage a maximum of 35 minutes in the chair but I’m determined to improve this and be able to use my wheelchair again. This will mean I can be taken off the ward for a change of scenery which I believe will help my wellbeing greatly.

I decided to dedicate the second half of this post to ways of coping whilst in hospital, some of which I use myself and others which have been recommended to me; if it can help even one person it’ll be worth it as I’ve had some very dark days even throughout this admission.

1 – Distraction

Probably an obvious point, but distracting yourself from the situation can be helpful – obviously with machines bleeping, various lines hanging from you and nurses being around this can be hard.

I find the most effective way of doing this to be listening to something. I downloaded some shows on Netflix before coming into hospital, but having my headphones on helps me zone out from where I am. You could even listen to music or an audiobook, but this helps me remove myself slightly from the surroundings and music can often be uplifting.

2 – Control

I find one of the hardest things about being admitted is the lack of control. Even me having a lack of independence generally, I still see a stark difference when I’m in hospital; unable to administer my own medications, to get to the bathroom, to wash myself etc and this has been even more prominent this time around as I’ve been entirely bed bound for the last eighteen days.

My advice is take what control you can – for me this includes checking my tablets and making sure I’m taking what I should when I should be, washing myself where I can and communicating my needs with the staff; if you’re unsure of something, have the confidence to question it as you have every right to do so.

3 – Comforts

Having something from home, or something that I normally use day to day with me in hospital really helps. This can be different for each individual, be it a blanket, food, toiletries or something else, a bit of ‘normality’ always brightens my day. Even keeping in regular contact with family/friends can help; as I can’t even get out of bed to get downstairs in my wheelchair to see Jeffrey, we FaceTime which always brightens my evening up.

There is no doubt about it; being in hospital is difficult, but when it is a necessity the best just has to be made out of the situation. I’m hoping for some progress today as I go to The National Hospital for Neurology and Neurosurgery to have tests to try to get some answers about my fainting, and potentially be allowed to start Octreotide. They were due to happen yesterday but due to a severe hypo with my blog sugars because of a lack of steroid, they had to be cancelled.

Thank you particularly to my Mum who has been at my bedside everyday, and again to everyone for your kind cards, gifts, messages and visits; you’re all making this very difficult time so much more bearable, and for that I’m eternally grateful.

Post Op Update.

I thought it was finally time, now I’m over a week post-op, to publish an update post. I’ve been too weak to write this on many days and very fatigued but I’ve finally got something together. I really hoped that I would be saying how well the op went and that recovery was going smoothly, but let’s face it, with my body and my bad luck that was never going to happen…..

Surgery day itself saw the usual stresses that come with having an operation. These were exacerbated by the fact that I was first on the list and told I’d be in the anaesthetic room by 8am, but instead It was announced that there were emergencies which I’d have to be slotted in between. I’d gone through bowel prep, pre-op drinks and fasted, yet come 3pm I was still waiting, with the idea of surgery that day looking increasingly less likely. The surgeon came to me on the ward shortly after, explaining that it wasn’t good news, and what we were told about the emergencies were lies as he’d had an entirely elective list, but instead there wasn’t an ICU bed so the operation couldn’t be done until there was the guarantee of one.

I just broke down. This was the second time that the surgery had been cancelled/postponed, and I just couldn’t take people playing with my life in this way anymore. I am so beholden to so many people due to my ill health and there gets to a point where it’s so frustrating I just can’t cope with it. The surgeon saw me in this state, begging for him to do the surgery no matter what it took – whilst it wouldn’t have been sensible, I even said I’d chance not having an intensive care bed. He calmly told me that he had one more procedure to do; if there was an ICU bed after it he would stay and do my op, and if there wasn’t then I’d have to go home and it be postponed. After some more tears to my Mum, the nurse popped her head around my curtain and said the theatre staff were on their way to collect me; I had an utter mixture of feelings but felt like I didn’t have time to experience any of them! They had a bed and it was finally time for my ileostomy.

My Mum was allowed into the anaesthetic room until I was put to sleep, and then had to play the waiting game for the next 4/5 hours. Once I was awake in recovery and Stewie (the stoma) had entered the family, all I wanted was for my mum to be able to come in so she knew I was okay as I couldn’t even imagine how awful the wait must have been. My pain was excruciating so once that was under control with copious amounts of morphine and I was thought to have been stable, my Mum came in. Stewie met his Grandma, my Dad and my darling Jack were waiting outside and we were just leaving for The Critical Care Unit, when I had my first crash call.

Initially it was thought that it was just a normal fainting episode, but when all the machines started bleeping and a further look was taken, it was discovered that I’d fallen unconscious. I was told my chest was entirely rigid, my lips were blue and drs from all directions ran over to my bedside as my mum was evacuated from the room in what she called the scariest moment of her life. Extra lines were put in in my feet, needles were pricked, meds were administered and bloods were taken as the doctors came to the conclusion that the safest option would be for me to be intubated. Just as the first tube was inserted into my throat I woke up and eventually once declared stable again, my Mum was allowed back in.

On Critical Care I had a 1:1 Nurse, and these crash calls continued, as unfortunately, they still do now. The worst part for me is that my family members have experienced them which must be so traumatising, but it’s also worrying that the root of them hasn’t yet been found. My faints have also been terrible, meaning I’m unable to even get myself into my wheelchair and so am ultimately bed bound and have been for the last 10 days. After five days in Critical Care, I’ve been moved to a surgical gastroenterological ward which is where I remain and expect to remain for at least the foreseeable future.

However in addition to the fainting and crash calls, recovery from the surgery hasn’t been otherwise straight forward either. During my first visit from the stoma nurses, it was noted that my stoma wasn’t as prominent as expected, particularly as it should shrink as the swelling from the operation goes down. It’s now been found to be retracting, and is thought that a mixture of my EDS and scarring from my Crohn’s Disease is causing this to happen. We won’t know for a while whether I’ll require revisional surgery as we’ve got to allow this to settle, but at the moment we are using convex bags, ‘doughnuts’ around the stoma itself and additional seals to try to create a good fit of the bag and prevent leaks.

Another issue I’ve encountered is that many of my medications have been going through to my bag whole. The fact that I would now have a fast transit, especially in comparison to before, and so absorption of my medications would be different had never crossed my mind. Numerous of my medications don’t come in other forms and due to not absorbing them I’m suffering a flare of many other symptoms. Those that come in a liquid preparation have been changed to that and we are still trying to work out what to do with many of the others of them.

This is complicated further by the frequent vomiting I have experienced since the operation. I’m fine snacking on naughty foods (crisps, sweets etc), but the second I eat anything with substance I bring it straight back up, and we have tried everything. The foods attempted have included a forkful of potato, dry cracker, chicken, salty chips, plain white rice, chicken goujons, porridge and basically everything else! I implemented strategies such as chewing everything well, having only a small amount and giving myself time between mouthfuls but we’ve had no luck, it’s been so draining and I’ve gone nearly a fortnight now with no ‘proper’ food. There were talks about starting TPN, but with my condition and the way my body works (or doesn’t work most of the time!), my stomach would most probably never be able to process food again. With the nutrition team, I’m on glucose and vitamin drips over the weekend, and I’ll be reviewed on Monday when I’ll most likely need to have an NG tube sited whilst we come up with a more long term plan.

As you can tell, things are far from easy and I’ve had days where I’ve struggled more than I ever expected I would. I’m still on constant oxygen due to significant desaturations and pain is still an issue so I’m still using my Oxycodone PCA until I have a review on Monday. I really mean it when I say I truly am grateful for everyone around me, for the constant love, messages, support, visits, presents and cards which have got me through these extremely difficult weeks; there have been times when I haven’t seen a way forwards and you’ve all helped guide me there.

Please bear with me and keep me in your thoughts and prayers whilst I continue my recovery and adjusting to this huge change in my life. Stewie… we can do this.💪🏼