Dog A.I.D Training Weekend.

Last weekend, my Mum and I went to Stoke Mandeville stadium for a Dog A.I.D training weekend. Dog A.I.D are the wonderful charity whom are helping me to train Jeffrey as my assistance dog, and these weekends aim to work on various tasks required for dogs to fully qualify. There were around 10 clients with their dogs in total, all at different stages of the training programme.

The weekend was so enjoyable, despite my nerves and me not really being up to it after only having my port surgery and getting out of intensive care a few days before – it was well worth it!

We were split into groups of three dogs; in ours was Jeffrey, my Mum and I, Mutz the Labrador and his owner, and Bella the staff with her owner. Being surrounded with people doing the same training as I was so lovely – it was reassurance that everyone experiences similar frustrations, and also enabled us to learn different training techniques from each other.

The Saturday was split into four sessions; recall, ‘leave it’, ‘stop’/ control at a distance and learning to pick up items/ open doors etc. The day was structured such that there were numerous breaks scheduled in which I really appreciated as, with being ill, I get so exhausted, and Jeffrey was definitely grateful for a breather in between sessions too! Jeffrey made me so proud, and the weekend has motivated me more to continue with the training, with the aim of achieving Level 2 before working towards full qualification. It was also a much needed reminder that they are dogs that we are trying to train, not robots and everyone feels despondent at times but ultimately, practice makes perfect. Saturday was also lovely as I got to see my friend Ruth with gorgeous Willow whom is fully qualified and was also trained by Dog A.I.D. It was really nice to be able to catch up, and it made me even more excited for Jeffrey to be my fully accredited assistance dog.

After the four training sessions Jeffrey and I were absolutely exhausted, so we went back to our room and relaxed. We definitely slept well that night and Jeffrey was raring to go on the Sunday morning, although I wasn’t feeling great health-wise I was excited to get back to the training and my Mum helped out where I couldn’t. Sunday was a more relaxed, fun day for us and there was a big course set out for the dogs to go round, and practice different elements of their training along the way. We all had lunch together and it was so lovely to chat to other clients who had such an understanding of what we were going through too.

After a raffle and lots of goodbyes, we all parted ways although I am keeping in touch with some of the other clients. It was such a lovely weekend and my Mum, Jeffrey and I took so much away from it. After the busy weekend that we had, a well deserved early night was needed all around…

Sepsis Awareness Month.

September is Sepsis Awareness Month, a cause very close to my heart and a blog post which still feels so raw for me to write.

On 27th March this year, a day that is engrained in my memory, I was blue lighted into Resus with what we found out to be life-threatening sepsis; I know just how lucky I am to be here today in a position to spread awareness of this devastating condition. In the UK alone, 5 people are killed every hour from it.

Sepsis (or blood poisoning), is the immune systems over reaction to an infection rather than fighting it. This means that the immune system attacks the body’s organs and tissues, potentially resulting in organ failure and ultimately death if not treated. I went to see two different GPs, and attended A&E with my symptoms worsening, yet it wasn’t picked up at all. It was left until my temperature was dangerously high and my breathing failing that I was taken seriously and not made to feel like a hypochondriac.

The bug that I had in my blood was very dangerous and rife, I was at the risk of it attaching to my heart valves and my joints, and I had to have emergency surgery to have the port-a-Cath removed. I had to have a minimum of a fortnights IV antibiotics which was said to be like the ‘bleach’ of the antibiotic family. I have never felt so ill in all my life, and to be honest I felt like I was going to die; at times I thought I’d be better off dead than dealing with the symptoms I was.

Whilst I was fortunate in getting over sepsis, that was never a given and it was an extremely worrying time for my family and I. We tried in excess of 8 different IV antibiotics before we found any that the infection responded to, all the while I genuinely thought I wouldn’t get through it. Whilst the Sepsis is now in the past, I am struggling with Post Sepsis Syndrome now which is said to last up to 18 months or even longer after the infection itself. This has a range of physical and psychological symptoms, including; lethargy, swollen limbs, joint and muscle pain, repeated infections, flashbacks, nightmares and PTSD. I think the most difficult impact for me has been psychological, the trauma really scarring me.

The month of September is dedicated to raising awareness of this potentially fatal condition, and even more poignant to me as I’ve had another port inserted this week which was the cause of my infection. If you think symptoms you are experiencing could be sepsis, don’t wait, and don’t be afraid to ask if it is a possibility. This condition has changed my life, but I’m one of the lucky ones as it didn’t take my life; hopefully by raising awareness more people will be survivors of this horrendous condition.

Mini-Break.

Last weekend, my Mum, Jeffrey and I went away on a mini-break to a cottage in Lincoln for the bank holiday weekend.

My Mum and I get very little time, and even less quality time, together at home and so a few days away together were in order. I spend so much of my time at hospital appointments, in hospital or with carers, and so some time away from all of that was necessary. Going away whilst having complex health conditions is extraordinarily stressful, even if it is only for three nights in England! I have to ensure the location is accessible and suitable, as well as remembering and packing sufficient stoma supplies, catheters, medications, injections, sharps bins etc before I can even think about clothes! The few days before going away was particularly stressful as I wasn’t very well and fatigue was overwhelming, but fortunately I got through it and managed to get my packing done.

On Friday, the drive here took around five hours due to bank holiday traffic and various accidents along the way. However, when we arrived we had the warmest welcome from the owners who live in a house next door to the cottage in which we were staying. Our cottage was perfect as it was all on one level, and beautifully rural which was such a welcomed break from the mania of day to day life. The hosts were such lovely people, and it was lovely to talk to the owner whom had had his own life turned upside down due to an accident and could relate to my struggle with what I’d lost due to my illness.

The cottage was gorgeous; low beams, cozy, quaint and to top everything off… had a hot tub! The hosts showed us around and how to work everything before my Mum and I ordered pizza and of course… jumped straight in the hot tub. I love the feeling of the hot tub on my joints, and to just be relaxing with my Mum as the sun set was lovely. We were both exhausted so the rest of the evening was spent watching Netflix before diving into bed. Being so rural, the nights were absolutely pitch black and it was so lovely to not have the usual whir of sirens and glare of street lights.

On Saturday, we went for a trip to Whisby Nature Park, a gorgeous area full of wildlife, a lake, different walks and a doggy ‘beach’ to name a few – we had beautiful weather for the day too. The paths were relatively hard and dry, and the walk we took mostly flat so getting the wheelchair round wasn’t too difficult. We chose the walk that allowed dogs off of leads so Jeffrey got a good run around; we stopped at the beach half way around so Jeffrey had a little paddle in the water, then when we finished the walk we stopped in the cafe overlooking the lake for a drink. There’s just something about being out in green, open spaces that help me to clear my head and feel better about things.

On the way back to our cottage we stopped in a few shops to get supplies (which also enabled me to do some assistance dog training with Jeffrey), and then got back and into the hot tub… we definitely made the most of it! I was absolutely exhausted again, and so watched some TV in our PJs before getting into bed. Sunday was a similarly relaxed day, with no where to have to rush to we took Jeffrey out for the day and also enjoyed the hot tub again. Sunday evening was made by a lovely friend who lives near Lincoln (also with a stoma bag) popping in. We hadn’t seen each other for months and it was lovely to have an evening to catch up.

On Monday morning we had to be out of our cottage by 10am, and so we got up, packed the last bits away and then headed home. The journey home, fortunately, was just over three hours so much better than on the way there. My Mum and I had the loveliest few days together, with time to just relax. The thing that gets to me most is not getting a break from my symptoms which I wish, even for a day, I could, but I’m trying to make the most of what I do have.

Our mini-break now seems a distant (but lovely) memory – Now, back to reality; knee surgery pre-ops, hospital appointments and the thought of my port surgery and hospital stay next week…

Smart Wheels.

I’ve been in discussion with the local wheelchair service recently about a power chair which I am now finally eligible for now our house is totally accessible.

A traditional power chair isn’t suitable for me for various reasons, one of these being that I can’t get it in my motability car nor my carers cars, and also that I’m not always able to control it myself. The ideal solution that we all decided on was to have ‘smart wheels’. These are manufactured by Invacare and are ‘e-motion wheels’.

With my current wheelchair, although it technically is attendant propelled, I am unable to propel myself as it causes my joints to dislocate. However, with these e-motion wheels, they have a motor in them, and so just a slight amount of force on the push rims helps to propel the wheelchair. This means that even with the limited strength I have, I’d be able to have some independence back by being able to move myself, whilst it would greatly help my carers/ family/ friends etc whom don’t have the easiest job of having to push me everywhere. These smart wheels also can still be taken off and I can have my manual wheels clipped back in if needed, so I have the best of both worlds and it’ll fit in my carers’, and my, car.

As my carers are funded by continuing health, I was advised by the wheelchair service to apply to funding from them, and so this is what I did. The wheelchair service wrote a report, and I wrote a supporting letter which we sent off just over a month ago. I was assured by continuing health that the application was likely to be successful, and so whenever I’ve recently got frustrated about not being able to move myself to look at something on a shelf, or adjust my position to get out of someone’s way, I’d get by on the fact that I’d soon have these wheels and have some quality of life from them.

I know that there are countless other people needing support in the ‘system’ and that these things take time, and so I was patient but eagerly waited to hear what the next step was.

My hope was totally crushed yesterday afternoon when I received an e-mail saying that the wheels are not going to be funded as ‘finances are stretched to breaking point’, and ultimately the point was that I have a useable wheelchair and constant carers who can push me so there is no need. Seriously… what next?! It actually reduced me to tears which sounds so pathetic at 22 years old over this, but these wheels would give me more independence and some much ‘craved’ normality. Every. Single. Thing. Is a fight and I just do not have the energy to keep battling everything, whilst trying to cope with my body which fails me on a daily basis.

I could apply to charities as I did for a different chair in the past, but this is an extremely long, exhausting process and I’m not sure I’d get funding from many of them now anyway. I really don’t want to crowdfund as our friends and family support us as it is, and it just isn’t what I’m comfortable with, so I’m ultimately at the end of my tether. This is something that should just be straight forwards, the wheels should be ordered now and I should be looking forwards to a sense of independence on the days I’m able to use them; But no. It’s another fight I have on my hands.

For the time being, we’ll have to continue how we are, but it’s infuriating beyond what I can put into words. My carers are unable to ‘care’, anyone I’m with is stuck behind me so I can’t even have a conversation and I have no independence, not being able to get to where I’d like to without needing to be moved every inch.

I don’t know why I was hopeful for these because nothing in my life works out and this is just further proof of that. I’m sure somehow I’ll get myself together and I WILL get these one way or another. I just can’t think like that at the moment, so for now it’s just coping from one day to the next. Things must get better from here, mustn’t they?

Disappointment.

This week has been full of disappointment.

As you know from my last post, my port surgery was scheduled for Tuesday, and I had some real worries about it after what I went through with my last port. When Tuesday morning came, after a night of no sleep my carer and I left home at 6.30am and headed to UCLH. I got changed, signed the consent form, had a chat to the surgeon and finally met the anaesthetist just before I was due to be taken to theatre.

After a discussion with the anaesthetist, due to my reflux and very slow transit, he decided that it would be safer to do the port insertion under a general anaesthetic rather than sedation as was originally planned. He also said I would have to stay overnight due to my past episodes of respiratory failure after a GA, and so, as much as I hate hospitals, I just agreed to it as this needs to be done. So, despite having 5 surgeries at UCLH, my notes hadn’t been reviewed sufficiently to realise this was needed in advance.

I was told that it now wouldn’t be done until the afternoon list, and so we were left for a few hours whilst the anaesthetist went off to pull everything together. As time went on, I started to become increasingly doubtful that this was actually going to take place and unfortunately eventually, the anaesthetist came back and confirmed my suspicion. Mentally it absolutely shattered me. I had got myself so psyched up to have this over and done with, I was exhausted after having no sleep and just so angry that this could have all been prevented if my notes had have actually been read and the necessary precautions put in place.

I had to wait a couple of hours further to speak to yet another anaesthetist, who asked for me to send in some clinic letters from my cardiologist to reassure him that, despite my POTS, the surgery could go ahead. I’ve sent these letters in previously, but apparently after recently going from paper to electronic notes, they haven’t been uploaded to the system. I have sent in all the necessary documentation, and I now have to wait for another date to be sent through to me once a high dependency bed has been booked and everything has been organised for a GA to be administered in interventional radiology, where most of their lists are done under sedation.

Frustrating doesn’t even cut it; the whole situation could have been prevented, and the port insertion would be out of the way now.

I was then due to have my Gastric Emptying Study on Thursday – my third attempt at it after be asked to come off of all anti-emetics for the previous two and throwing up before results could be obtained. I received a phone call on Wednesday evening telling me that, despite it being booked for weeks, they could no longer fit me in for the test. I got so frustrated and the conversation finally ended that I should just turn up and they would ‘try to get it done’.

Fortunately, they managed to fit me in, and I managed to somehow keep the radioactive mash down on my IM antiemetics. It showed that after the test, none of the food had digested whatsoever, and so my carer had to go away for a while and return for another scan. Still, after this extra time, my stomach had failed to empty at all.

This confirms gastroparesis due to my EDS, and finally gives me evidence to show a particular consultant that my vomiting isn’t all ‘in my head’. I’m seeing my new gastroenterologist on 25th September and so I’m really hoping we can come up with a plan going forwards from there, as my stomach is deteriorating and I’m desperate for help.

It has been an absolutely draining week to say the least, and I’m now playing yet another waiting game for my port-a-cath to be inserted. However, I have to draw on the positives as, whilst I feel overwhelmed at finally having confirmation that my stomach isn’t functioning, atleast it’s a step forwards in getting much needed help.

Port Paranoia.

After seeing a vascular surgeon a couple of weeks ago, it has been confirmed that I need to have another port-a-cath inserted – the very thing that led to life threatening sepsis and an 8 week hospital admission earlier this year.

To say I’m petrified would be an understatement, and as the surgery has been booked for this coming Tuesday, it really seems all too real. I’m used to having surgeries etc now, and after going through this particular one four times I know what to expect; however, knowing just how poorly my last port made me and what I went through as a result of it, I really wish there was an alternative. In terms of central lines and vascular access, it’s the device with one of the lowest infection rates – it must have just been my bad luck earlier this year, but I can’t help but think if it’s happened once there’s every chance that it could happen again.

As I’ve already had three ports and, as a result, have a lot of scar tissue, the surgeon has decided to site this one on the left of my chest as the other three have all been on the right hand side. As vascular access is notoriously hard and my Ehlers-Danlos syndrome causes a multitude of issues, this week I had to go up to UCLH for a duplex ultrasound scan in preparation for the port insertion. On Wednesday, I had an ultrasound of the left side of my neck, chest and my left arm to consider suitable positions in which to site the port. The radiographer was fairly happy they had good enough options to go ahead, and so I was then sent down to phlebotomy to have pre-op screening blood tests done. As always, hence the need for a port, it was like getting blood from a stone, but fortunately we eventually got enough from various veins and I could go home, all ready to return on Tuesday morning.

After all I’ve been through, very few things make me nervous like this now, but my most recent admission was one of the, if not the toughest thing I’ve faced in my life, and I just couldn’t do that again. However, I wouldn’t be having the port if it wasn’t totally necessary and it’ll enable me to have further surgeries and treatments to hopefully, in the long run, improve my quality of life. Being immunosuppressed, there are countless potential infection risks, and whilst my port remains one of them, I just have to try to minimise that risk wherever possible but also appreciate the benefits of having the device. Tuesday is coming round insanely quickly, and here we go again with yet another surgery…

Gastroparesis Awareness Month.

August is Gastroparesis Awareness Month; a condition that occurs commonly secondarily to EDS and is what is suspected to be causing my hugely debilitating gastroenterological symptoms.

Gastroparesis, literally meaning paralysis of the stomach muscles, is the delayed emptying of food from the stomach into the small intestine. One of the diagnostic tests is known as a ‘Gastric Emptying Study’, where food such as egg or mash potato is eaten containing a small amount of radioactive substance and a series of scans are carried out. Gastroparesis is typically characterised if, during a Gastric Emptying Study, more than 10% of the food is still in your stomach four hours after eating.

Symptoms of this condition can vary from person to person, but typically include feeling full quickly, nausea, vomiting, loss of appetite, bloating, stomach pain and heartburn. In my case, I get full very quickly, only being able to eat a few sweets before I then look 8 months pregnant, I have severe stomach pain and frequently vomit.

Gastroparesis can occur idiopathically (without an obvious cause), or it can occur secondarily to another condition such as EDS or amongst diabetes sufferers where poor blood sugar control has damaged nerves to the stomach. Unfortunately, there is no cure to this condition, and so it just has to be managed. The severity of it can hugely differ from person to person, and so the medical intervention needed varies.

A dietician can be involved to offer advice such as trying eating little and often, taking soft/liquid foods which are easier to digest and chewing foods well. In addition to this, medication can be prescribed; this can be to either help stomach contractions to take place to move food along, or antiemetics may be started to control the nausea and vomiting.

In more severe cases, a feeding tube may be needed. These can be on a more temporary basis such as a nasal (NJ) tube such as what I had, or can be a surgical tube which goes into the small bowel through a cut in the tummy. A liquid feed then is pumped down the tube into the small bowel, bypassing the troublesome stomach. If this isn’t appropriate or doesn’t help, sometimes parental nutrition is required where a liquid ‘feed’ is passed into the blood stream via a central line.

August, the month dedicated to the awareness of Gastroparesis, aims to improve understanding and management of this horrendous disease, with the hope of improving the quality of life of those living with it.

“It’s In Your Head”

It’s crazy how the opinion of one healthcare professional can have the biggest detrimental impact on the overall care you receive, and on the way you feel yourself.

If it’s not difficult enough dealing with multiple chronic illnesses and the implications of them, having consultants who are telling you that the health problems you’re dealing with are ‘in your head’ makes the situation almost unbearable. Regardless of test results confirming conditions, surgeries and emergency admissions being needed to manage them and diagnoses being proven, it still doesn’t seem to be enough for some consultants. Unfortunately, I know I’m not the only member of the chronic illness community to be treated and disregarded in this way.

It has really been getting me down this week. There has been one consultant whom I’ve been led to have very little faith in after making me numerous empty promises, and I thought that once she had discharged me (without actually helping me!) that the negative impact of her being part of my care was over. However, she has contacted my other consultants giving her opinion that things are ‘in my head’, and so now this is having a severe horrendous impact on the care that I am receiving overall, really ‘tainting the water’. Apart from making a complaint I just don’t now where to turn as, in my opinion, the damage is done and it really is the last thing that I needed. It’s just another fight on top of everything else for me to be believed which just shouldn’t be the case.

At the moment my gastro symptoms are getting increasingly debilitating. I am vomiting after eating, with severe pain and bloating if I do eat anything and I’m left trying to control symptoms with intramuscular injections and opioids for the pain. I don’t manage to eat anymore, and I can’t keep meal replacement drinks down either, so my calories are coming from boiled sweets and other things that are absorbed basically in the mouth, relying on strong anti-emetics. It’s no way of life, and whether it’s ‘in my head’ or not, all I want is relief from it and some normality to be able to eat again. It was pretty certain that my issues are from EDS related gastroparesis, but now is this going to be ‘all in my head’ too? It’s hard to believe that my stomach is working perfectly when the function of my bowel and lower GI tract was so poor it lead to needing an ileostomy, but some health care professionals just don’t seem to see sense.

I have mixed feelings about things being classed as ‘in my head’, especially when it seems to make my conditions so invalid when I’m suffering with the symptoms of them day in day out, having had my life turned absolutely upside down by it all. Doctors can be amazing and have saved my life, but they can also make you feel totally hopeless and have such a detrimental impact on both your life and future care, and right now I have this to contend with.

Distant.

I think sometimes, in a situation as overwhelming medically as mine has been of late, you just need to distance yourself from everything (as much as possible) and this has been how I’ve felt the last couple of weeks. I haven’t been able to bring myself to write a blog post, I’ve been struggling to keep on top of everything, I’ve found it hard making contact with people and to be honest it’s all just become too much.

I’ve had a few appointments, some of which have been extremely challenging to cope with, but moreover my symptoms have been worsening. Dislocations (particularly of my shoulders) have been more frequent, my gastro symptoms have been deteriorating with no appointment until September, pain has been through the roof and I have my knee surgery coming up in October. My mental health has been at the lowest of the lows, and, whilst I don’t begrudge them at all, seeing a lot of people graduate has really been getting to me as I should be there too.

I just feel so distant from everything, and I don’t know how I’m going to change that. I’ve been desperately trying to ‘pick myself up’, but that’s way easier said than done. The only way I can describe things is that my world is standing still whilst I’m overwhelmed by people’s lives carrying on, as mine should be, around me. I feel super restless; concentrating to read or watch television seems almost impossible, and I just don’t know what to do with myself.

In an ideal would, I’d like a break from everything medical. From the physical symptoms, the appointments, the wheelchair, the mental health symptoms, the carers, just a break from it all, and ‘normality’ back, even just for a day. However, I know that’s totally unrealistic and not going to happen, as difficult as that fact is to digest.

Of course the coming week is nothing different to normal, filled with the usual itinerary of appointments, but I just need to find a way to stop me feeling like this and to start enjoying and appreciating the little things I do have again. Of course I’m grateful for what I do, such as getting out in the fresh air with Jeffrey etc, but unfortunately the medical side of things is just overwhelming, and there truly is no joy in living like this.

Disneyland.

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

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

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

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

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

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

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

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

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

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

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

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