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.๐Ÿ’ช๐Ÿผ

See you on the other side.

So the day is nearly here… I’ve been admitted to UCLH, my IVs have been administered, bowel prep has been drunk and tomorrow I’ll be having an ileostomy.

I’m petrified. I’ve cried so many tears since I’ve been here and reality has hit. This is the last time I’ll have a non scarred stomach, the last day without having to cope with a bag and the last day before the major op I’ve waited so long for.

Because of my health conditions, I’m going to be in ITU after the op with extensive monitoring, an arterial line, drains, PCA etc and so it will be a while until my next blog post unless a guest post is published or a family member posts one of my draft posts.

I just wanted to say a huge thank you to my friends and family who have been a constant support, shoulder to cry on, ears to listen to me and my strength through all of this. I appreciate it more than I can put into words. As the blog post is titled… I’ll see you on the other side.๐Ÿ‘‹๐Ÿผ

Finding a new normal.

With major surgery looming on Tuesday, I felt a suitable topic for this weeks blog post was adapting to a new ‘normality’.

When I think back even just a few years, I had so much more independence, there wasn’t the need for a wheelchair, I was on fewer medications and ultimately my life was much less ‘medicalised’, even allowing me to complete my first year at Cambridge; I never, ever imagined my life would be like it is now. I have been told time and time again that I will adapt to the new ‘normality’ that my ill health has forced me in to, but the truth is I don’t think I ever will. Of course the definition of normality is different for each individual and what is regarded by society as normal differs, but in my case it would just be going back to how things were before I was burdened with these diagnoses. Going back to all I knew for the first sixteen or so years of my life. Whilst I wouldn’t wish ill health on my worst enemy, I frequently try to remind myself that I’m not alone in my situation. A simple search on social media reveals numerous other young adults in a similar position to myself, and it can be of some comfort that there are people out there that are experiencing the same difficulties as I am.

I will never consider having to catheterise, dealing with an ileostomy, frequent faints and coping with multiple dislocations a day, just to name a few things, as ‘normal’. I think in my case this is even more challenging than it is for some others as, whilst I’m grateful I had years of better health, I was teased with a taste of what life could have been like without these health conditions – this was cruelly stripped away as my health rapidly deteriorated. I truly grieve for the life I had, and that I believe I should be living; I should be in my third year at Cambridge, coming up to graduation, stressing over my dissertation, being able to travel the world without a second thought… yet here I am just days away from major surgery, living my life around hospital appointments, my days dictated by my symptoms and able to do very few things that healthy 21 year olds wouldn’t even think twice about. Furthermore, after this operation, I have numerous others that I will have to endure to address various issues caused by my chronic health conditions… things truly are relentless.

When I tried to think about exactly what my normal is, I could not quite pinpoint it. Is it the fact that I have drastically reduced mobility compared to what I used to have? Is it the new symptoms that crop up, and the worsening of my current ones? Is it that I’ve gone from a Cambridge student to now having days where the best I can do is get out of bed? I think that my normality is just reality; life the way it is now. There is no getting away from it, most of it I am unable to change, but it just has to be made the most of.

If you’re reading this as a friend or member of my family, all I can say is thank you for your constant support and for getting me through some of the most challenging days of my life. It means more to me than I can express; a text, thought, visit or other kind gesture can uplift my whole day. If you’re reading this as you’re in a similar situation to myself, as difficult as it is you aren’t alone and it won’t be long before you realise your strength.

Since becoming unwell, my priorities and outlook on life have dramatically changed. I appreciate the little things so much more, nothing is taken for granted and I have a much improved ability to see the positives in situations, even when it is thought there isn’t one. Of course some days are harder than others, but there is good to be found in everyday, victories to be celebrated no matter of their size and others to be reached out to for guidance and support.

“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.”

Ileostomy.

Finally after about a year of seeing various consultants and dates being cancelled and re-arranged, I’m having my ileostomy on Tuesday 10th April; only 11 days away. This is an operation that isn’t spoken about very much and many people aren’t aware of, and so I decided to focus this weeks blog post on it.

An ileostomy is a stoma formed from the small bowel (stoma is Greek for ‘opening’). The end of the bowel is brought through the abdominal wall and stitched to the skin; a ‘bag’ will then be attached to the skin externally to collect waste products. This operation is being done to eliminate the need for me to carry out irrigation. Ileostomy’s are performed for a variety of reasons; Inflammatory Bowel Disease, cancer, trauma or perforation to the bowel, but in my case is due to EDS and the severe gut motility problems it has caused me.

Adjusting to living with a bag is going to be a huge challenge for me, and I expect to feel weak and emotional after the surgery. In addition to the practical differences of living with a stoma, there are additional lifestyle changes. Firstly, diet has to be carefully considered. Fluid and salt intake has to be increased, food has to be thoroughly chewed to aid digestion and small, regular meals are recommended. There is a chance of blockage, either from adhesions after the operation, or from foods such as nuts, dried fruit, pineapple and popcorn. Any stoma is at risk of a hernia, but even more so in my case due to the nature of having a connective tissue disorder. To minimise this risk as much as possible, a support band can be worn which I already have been given to reduce the chances of this occurring from the start. I will also have to consider what clothing I wear; to begin with my stomach will be sore and swollen so loose clothing will be ideal, but once I’ve healed I want to choose things that disguise the fact that I have a bag. After I’ve recovered, there will be other things to consider such as travelling with the ileostomy, going swimming and exercising, but these will be things that I’ll think about when the time is right.

I am already dreading what the next few weeks will bring, being admitted for at least 2-3 weeks is difficult enough in itself, UCLH isn’t exactly close to home, then there is the mental and physical challenge of the operation in addition to that; I should be grateful I have some time to think about things rather than it being done in an emergency situation but it’s hard to see the silver lining at the moment.

I’m eternally grateful for my family and friends who have given me constant support, guidance and love and who I wouldn’t be coping without; I’m so very lucky.

Casualty.

I was SO excited when I saw on some of the EDS support forums that EDS and POTS had been covered on last Saturday’s (24/03) Casualty, so I instantly downloaded it from iPlayer and caught up on it.

Whenever EDS is covered on a programme or suchlike, I always see it as a positive thing to help raise awareness of it and I was particularly impressed with the way it was portrayed on this particular episode. The story saw a girl who had fainted from a standing position and as a result had dislocated her shoulder. She went on to explain that her dislocations had become a frequent occurrence, and so her parents had grown used to popping her joints back in for her and showed no sign of being in pain when the doctors relocated her shoulder due to being so used to it. The patient also complained of stomach problems and weight loss, which could also be explained by her EDS diagnosis.

The most poignant part of the story to me was how the patient had suffered symptoms for in the region of ten years, yet felt like she hadn’t been listened to by doctors and had been continuously told she needed to see psychiatrists etc, which had led to her not wanting to open up to the doctors who were willing to listen to her. This seems to be so common amongst EDS patients, waiting unacceptable times for a diagnosis, with the multi-systemic nature of the condition making some doctors believe it’s all in the patients’ heads. “When you can’t connect the issues, think connective tissues’.

I am fortunate enough now to see doctors who specialise in EDS, but I still have to different consultants for each speciality (i.e. rheumatology, urology etc) as there is no one specialist who oversees the condition as a whole. However, on my journey to my diagnosis, I didn’t come across any doctors who were willing to give me the time I needed, to consider my symptoms as a whole rather than individual problems and help me towards a diagnosis. Still now, despite having established EDS/POTS, if the need arises to go to a local hospital rather than a more specialised centre, there is still so much ignorance surrounding the condition. Before I knew what was wrong I’d go to A&E with dislocations, yet all that would happen would be my joint relocated and often plastered, before being put through physio which failed to strengthen the joint, rather than the cause of the problem ever be really looked into.

However, I’m grateful that EDS and POTS are getting ‘out there’ more, raising awareness and hopefully meaning others don’t have to wait as long for a diagnosis as sadly so many people have had to. I was also impressed with how Casualty conveyed that EDS is way more than being bendy; it impacts most organs and systems, and has many conditions (such as POTS) which occur secondary to it. If you want to catch up with the episode on iPlayer, it can be found here; https://www.bbc.co.uk/iplayer/episode/b09xt8n7/casualty-series-32-episode-29

โ€˜Normalโ€™ people illnesses.

The past two weeks have been horrendous as I’ve been completely wiped out by a flu bug. I’m not talking a cold or a cough, but instead dripping with sweat whilst shivering, unable to get out of bed, no fresh air for 8 days, unable to eat, weight loss, fevers, beyond achey and extreme fatigue just to name a few symptoms.

It all started with yet another bout of severe tonsilitis for which I had to go into Medway Hospital for the day as my tonsils were at risk of blocking my airway, so I required IV steroids, antibiotics and fluids. Even then I didn’t feel too bad in myself, but thanks to a compromised immune system and having to put myself in a susceptible position in a hospital A&E, the following day I came crashing down.

I feel that with my chronic health problems I just about cope from day to day, but the second I get a ‘ normal person illness’ on top, it’s what pushes me over the edge. It knocks me harder than it would a healthy individual, takes me longer to fight it off and makes everything seem unbearable.

However, these additional illnesses have consequences further than that. Firstly, this time it meant I totally missed Mother’s Day. My Mum is my absolute rock and missing the chance to spoil her (as she should be everyday) was gutting. As understanding as my Mum is telling me it’s ‘just a day’ and all that matters is me getting better, to me it is a big deal as my health gets in the way of so much, and we had to cancel a meal we had booked and I was too poorly to even sit at the table with my family for the meal they ended up having at home.

Also, it meant that I had to cancel all my medical appointments I had for about 10 days – not only does this delay treatment that I’m waiting for, but my diary is so packed with appointments that it puts everything back and trying to rearrange appointments becomes a logistical nightmare. I’ve had to cancel the hand OT who I was meant to see again before I go back to the orthopaedic surgeon about having my thumb fused, I had to miss taking Jeffrey for his therapy dog visit and ultimately just felt like I was missing out.

My head was spinning and for the first four days I couldn’t even pick up my phone let alone look at the brightness of it. As my symptoms gradually begun to improve, which feels like it’s dragged on forever and is still lingering, I spent the days in my pyjamas, lying on the sofa watching TV and scrolling through my phone, giving me way too much time to overthink everything. I love social media for being able to keep in contact with my friends, but I also hate it when I’m physically ill as, naturally my mental health starts to suffer when I can’t do what I want to, and seeing everyone else’s lives carry on is one of the hardest things. I don’t begrudge anyone anything, but I’d give everything to be able to do everyday things such as get out with Jeffrey, get to my appointments, get out of my PJs and get some fresh air.

I’m beyond grateful this flu bug is finally passing and I’m getting back to my ‘normal’, but with an immune system like mine I always dread what might be around the corner.

Frustration.

I’m sure I felt frustration before the deterioration of my health, but recently it’s been a feeling that has become increasingly prominent in my life.

On Monday I went to see a neurologist at The National Hospital for Neurology and Neurosurgery to try and set up a collaboration between herself and Dr Gall (my POTS doctor) to start Octreotide. As regular readers of my blog know, we’ve been trying to start this drug since last May and the past nine months have been occupied by phone calls and emails trying to implement this with no success and excessive frustration. I’m 21 years old, I can’t stand without fainting meaning I can’t participate in very much physio to help my joints, and each faint results in dislocations which are painful and distressing, particularly when it’s a larger joint such as a shoulder or hip; I’ve got to the point where I am absolutely sick to death of being passed from pillar to post and ultimately having my life played with as I’m suffering these symptoms.

The appointment was difficult enough having to regurgitate my entire history again, but when I was asked for my medication list, I was absolutely taken aback when I was blatantly told that being on the medications I am long term would be a serious danger, and that I wouldn’t be here very long on the concoction that I am; being told that I’m on more tablets than most 80 year olds also wasn’t appreciated. I understand that every medication has side effects and ideally I should be on the minimum possible, but I have explored every avenue possible to get a medication review, but as I’m not on first line or ‘common’ medications, no one is happy to take my case on. I got to the point where I cut down my medications myself as much as I could, so when I gave the list to the neurologist I asked her what she could advise I stop, and there was nothing… everything is taken for a reason. I was then told that due to having Crohn’s Disease and Adrenal Insufficiency in addition to my EDS/ POTS/ MCAD I was a very complex patient – I couldn’t have felt worse about things if I tried than I did at that point.

Despite having already endured full autonomic testing, I was told that the drug wouldn’t be considered unless I had the tests repeated. I’m not talking a quick test, but it’s two full days of gruelling testing, comprising a Tilt Table Test which most commonly results in a faint and the tests leave me feeling utterly drained and unwell. To healthy people, the tests probably don’t sound too bad in the scheme of things, but having autonomic dysfunction makes them unbearable. I expressed my concerns to the consultant, and even though I’d already had the tests at an established autonomic unit she said she would not proceed or even consider the drug without having them repeated herself; I hate how beholden I have to be to these medical professionals. The result of the appointment was that I’ve got to have three days of tests, during which I’ll be admitted. The main test is a ‘meal’ test where I am given a liquid meal and the impact of that is investigated by having my blood pressure and heart rate monitored as I’m tipped up on a tilt table – this will then be repeated the following day with Octreotide injected first to see if it improves my symptoms and observations. I am absolutely dreading the testing as I know what to expect, but as with many things, there is no choice if I want to try something that could improve my quality of life.

The bombshell was then dropped that the waiting time for these tests will be 6 months; that’ll bring us to September… sixteen months after starting this drug was first suggested to me. Again, I can fight this and try to get things moved forward with PALS, but that’s another thing to sort out, another email to write and another battle.

Already feeling disheartened after the appointment, my carer and I then got to Charing Cross to get the train home. As always, we spoke to platform staff who contact my local station to organise a ramp to get us off once we get home to Bexley, however, they weren’t answering and so the staff couldn’t put us on the train. This was breaking point; I’d had a long day, it was so cold (even colder sitting still in the wheelchair), and all I wanted was to be at home. It took for me to pour my heart out to the station staff (poor man!), who then finally agreed to put us on the train despite not getting hold of Bexley, against their policy. Why is everything a fight? I refused to wait another half an hour for the next train when there still may not have been any answer from Bexley. Whilst we were on our way home my Mum kindly got hold of Bexley and the ramp was arranged, but I should just be able to get on and off public transport as easily as a healthy individual, and as I can’t this really gets to me.

Even though it was before rush hour, the train was packed due to the snow being on it’s way and it’s situations such as this that really opens my eyes to how inconsiderate people are. There were people resting things against my chair, leaning on the handles, stepping over me, jumping in front of me and ultimately making me feel worthless. It’s already so difficult being at the height you are in a wheelchair in a crowd as you’re just not noticed or considered, but the day I had just intensified how invisible I felt.

I try my hardest to be positive, but there are some days where you just can’t and this was one of them. “Don’t forget that you’re human. It’s okay to have a melt down. Just don’t unpack and live there. Cry it out and then refocus on where you are headed.”

Dog A.I.D.

As I currently have Glandular Fever and my whole life is ruled by illness, I thought a post with a more positive focus was definitely needed.

Dog A.I.D (Assistance in Disability) is a charity who help people with physical disabilities train their own dogs to become assistance dogs. I had become aware of this amazing charity from various online support groups I’m part of, and even met a dog who was being trained with the support of the charity whilst at the EDS conference last year. The charity will consider taking you on as a client if you are over 15 years of age with a physical impairment.

Since having Jeffrey I had continuously checked the Dog A.I.D website as you will only be considered as a client if there is a trainer within a 30 minute drive from your residence. The trainers are all volunteers with the charity, and I truly admire the time they give up and the work they do. A while ago I happened to check the website (as I did frequently), when I saw there was a trainer in Tonbridge. I instantly contacted Dog A.I.D, was told I was in the ‘catchment area’ and Jeffrey was suitable (as he’s under 5 years old), so we proceeded to go through all of the necessary paperwork.

I was told that my details had been put forward to the trainer and I should wait to be contacted which, soon after, I was by Mandy, our local trainer. She came round to assess Jeffrey, recording things such as his personality, and his reaction to certain situations. As well as assessing in the house, she also accompanied my Mum taking Jeffrey out on a walk to observe his reaction to other dogs. We discussed the commitment involved in Jeffrey being trained as a registered assistance dog, then began to think about what tasks would be useful for him to do; these included fetching things, picking up items, taking off my socks etc, and when I faint either setting off an alarm to alert someone or staying by and comforting me. Mandy was so lovely, so understanding of our situation and took off her completed paperwork to put in-front of a board who would decide whether or not we could be taken on as a client.

To my absolute delight, about a fortnight ago we received a letter saying that we had been accepted, and we had forms to be filled in by both my GP and Jeffrey’s vet. After getting those completed and returned, we are ready to start the training and have been sent the ‘Level One’ booklet; Mandy is coming on Friday to get going with things. It’s going to be a long process requiring a lot of commitment, but I’m prepared for that and so looking forward to a distraction from being unwell.

Berlin.

For Christmas, Jack’s present from me was a long weekend in Berlin. I had seen online that it’s one of the top cities for accessibility and so I thought I’d try it out myself.

Firstly, I had assistance booked at the airport and I cannot fault the help we received at Gatwick. From the drop off point there was a man to take our luggage into the terminal so Jack could push my chair; he took us to the bag drop, got rid of our suitcases and sorted out a tag for my chair which would be put into the hold later on. He then left Jack and I to go through to the designated assisted security where they used hand held devices to screen my body meaning I didn’t have to leave my wheelchair and risk faints and dislocations. I got my medication out of my bag which consisted of tablets, sharps, sharps bins and vials of liquid injectable steroids and put the bag containing it in one of the trays to go through the scanner. I was so surprised but I wasn’t questioned about any of it, nor asked for the doctors letter which I was carrying confirming that I needed all I had – one of my biggest worries was being questioned about it or having some of it taken away so I was so relieved!

Once through security we made ourselves known at the main assistance desk who gave us a time to return (one hour before our flight departed) and gave us a pager which would also go off at this time. When we returned there was a man ready to take us to the gate, and the way things work at Gatwick meant we were taken to a different gate to the rest of the passengers in on our flight. As we arrived, a lady arrived in a minibus to drive us across the runways etc to an ‘ambi-lift’ which I was pushed into in my chair and this was then raised to the door of the aircraft, but the other side to it than where the stairs were for the able bodied passengers. Jack and I were first onto the plane, and just before getting on I transferred to their ‘aisle chair’ which fitted down the aisle of the aircraft and my own chair was put in the hold. I was pushed right up to my seat where I was then able to transfer on to it; the assistance worked like clockwork and I was so impressed by the service I received. The assistance continued in Berlin getting me off of the plane, back into my own chair, through border control and baggage collection right to our transfer to the hotel.

Berlin itself was on the whole fairly accessible – Jack and I visited all the major landmarks (Checkpoint Charlie, Brandenburg Gate, Topography of Terror etc) without major issues. The only disappointment was that we had planned to visit the museum at Checkpoint Charlie but that was totally inaccessible so we had to abort that plan.

On Saturday night Jack and I had planned to go to a Comedy Club called ‘Cosmic Comedy’ to have an evening out. As with most things, I had emailed beforehand to ensure its accessibility and was told that they had a lift down to the basement of the bar where it was held and so being in the wheelchair would pose no issues. However once we arrived there the lift was out of order and so it looked like we’d had a wasted journey. However, the co-host had remembered that we were coming that evening so waited outside for our arrival and without making me feel at all like a burden, had planned for himself and a security guard, with Jack’s help, to carry me in my chair down the stairs.

One of the hardest things about using a wheelchair is constantly feeling like a nuisance, but I was treated like it wasn’t a problem at all. Jack and I had such a wonderful evening there and I laughed more than I can remember laughing in a while. At the end of the night the same men (although slightly drunker than they were at the beginning!) we ready to carry me back up the stairs whenever we wanted to leave. I was so delighted by how accommodating and thoughtful they had been and it really made that evening a highlight of our trip. A bit of thought really can make so much difference.

Our weekend flew by, and we had the same assistance booked at the airport coming home as we had on the way out there, although it was much more poorly organised. We didn’t have a definite place or time to meet our ‘helper’ and so as the plane started to board we were getting stressed that we had been forgotten. We were also put on the plane last which meant that people had to move out of the way for them to get the chair down the aisle of the plane, and the people on the aisle seat had to move for me to get into my seat which was by the window, all causing more stress and embarrassment in comparison to the faultless service we had received from Gatwick.

Overall, we had a really lovely weekend; we had minimal access issues, we managed to be assisted and successfully get on the plane for both flights and we really enjoyed having time to spend together which is usually overtaken by the busyness of life.

Surgery Update.

I just wanted to post a quick update on my surgery, as it has been postponed.

I had a period of time before Christmas where my bowel suddenly was ‘working’ where I had an upset stomach and accidents, which was a huge contrast to it entirely not working which is what I’d grown used to. My gastro consultant knew this was the case, in addition to me vomiting, yet only last week she has emailed saying that before I have my ileostomy I need to have a colonoscopy and an MRI to check for any other abnormalities which could have caused those symptoms as it was a cause for concern.

The tests have been requested urgently, and we are yet to know whether they will be done as an inpatient or outpatient; we will just go with whatever will be quickest. At the moment there are a lot of unknowns and I hate not knowing when things will be, but hopefully it’ll all fall in to place and work out for the best.