The Toughest Weeks of my Life…

I really don’t even know where to begin…

I haven’t published a blog post since 20th March as this was when Coronavirus really started to take hold and mentally, like many people, I was really struggling with what was going on and the implications it was having. However, since then, my health spiralled downhill and so my Mum and I have finally managed to put this post together.

A few days after my last blog post I started to show signs of infection with no indication of the source; I was spiking temperatures, lots of general pain and nausea and vomiting seemed worse than usual. I phoned the GP and over the phone a course of antibiotics was prescribed which, whilst I still didn’t feel right, settled my temperature and I felt better than I had. However, a few days after finishing them I was deteriorating again and my temperature was creeping back up. Another phone call to the GP, more blood tests, a urine test and me querying the possibility of it being my port or my stimulator, they still couldn’t get to the bottom of the source, but another course of antibiotics were prescribed with a similar outcome to the course before.

With the Covid situation, I was unable to leave the house even if the GP had offered me an appointment which they didn’t, and they wouldn’t do a home visit despite the fragility of my health which they are obviously aware of. Things still weren’t great; the following week the district nurses visited to routinely flush, take bloods from & heparinise my port, two days after which I woke up to worsened spikes in temperature, the area around my port being agonisingly painful, the scars rapidly changing, the area very hot/ tender to touch and my fears of a third incidence of line sepsis from a port-a-Cath looking ever more likely.

Another phone call to the GP, a third course of the same antibiotic was prescribed and the district nurses organised to come and review the site the following week. However, my condition was deteriorating so yet another pointless phone call to the GP, still no home visit would be put in place, and so 111 ended up having to send out a doctor as I was advised to avoid A&E at all costs with my lack of immunity and Covid still being rife. The doctor changed the antibiotics that I was on, and things actually improved quite significantly – my temperature settled and the port site itself looked much better than it had. I was obviously being too optimistic that I could stay out of hospital, as when we stopped the antibiotics things started to flare again. I managed to convince the GP to finally allow me to send off a swab of the discharge from the port site that had started again, and yet another course of antibiotics were prescribed. No home visit would be put in place and I felt utterly let down by the care (or lack of it) I’d received from the GP surgery over the previous five weeks. I totally understand restrictions in place and the impact Coronavirus was having on health services, but swabs should have been done earlier and I had to push for them to allow me to email them pictures of the site etc and to get what ‘support’ I had recieved.

Unfortunately, on 2nd May, I ended up being rushed back to A&E after deteriorating quite significantly, where they confirmed I was septic for the fourth time in a year, my port being confirmed as the source which they’d have to remove. Considering my severe immunosuppression and my conditions which can be better managed at home, the plan was for as quick as an admission as possible to stabilise me sufficiently, before being discharged home to district nurse care who would finish the course of IV antibiotics. However, writing this seven weeks after being admitted and I still lay in a hospital bed, I can assure you that this didn’t go to plan…

The sepsis, as always, was very difficult to get on top of, with frequent reviews of my bloods and antibiotic treatment from microbiology and ending up being on IV antibiotics for over four weeks in hospital as things weren’t stable enough for me to return home.

During this time, as always when I am septic, my Gastroparesis really flared up which resulted in my vomiting up my feeding tube which had to be pulled out the rest of the way as it was unsalvageable. Eventually an attempt was made to replace it in Endoscopy which failed, and the tube had coiled back up before I was even out of the Endoscopy suite. Days later a second attempt was made to replace it (putting in an NJ Tube that was down to my knee?!), which I got back up to the ward with only for it to be vomited our around an hour later. To say I was gutted would be an understatement, and after going for almost two weeks with no nourishment, frequent vomiting, vomiting blood etc I was becoming increasingly weaker and all surgeries and procedures becoming riskier than they already were.

It was then decided that, after three failed NJ tubes, weeks of being left with no nourishment, my vomiting remaining relentless, my electrolytes critically low and my blood sugars uncontrollable, that a surgical PEGJ tube would be inserted, and so on 20th May this was done.

The following day we trialled feeding into the intestinal port, only beginning at a rate of 15ml/hour to find the pain, vomiting and bloating unbearable, before the feed began backing up so I was throwing it up and we had to pause it. We continued, lowering the rate of the feed until we reached 5ml/hour where the problems persisted and the feed had to be stopped. This continued and so it was confirmed that I’d gone into total intestinal failure.

Prior to the COVID lockdown I’d been referred back to St. Mark’s Hospital, Northwick Park for my Gastroparesis and Crohn’s care to be under one roof, but when the Coronavirus struck (with St. Mark’s being one of the worst hit hospitals) all appointments were cancelled and my referral appeared to be lost in the mania of everything. With the doctors telling me continuously that I was ‘out of their remit’ they tried to get hold of St. Mark’s for specialist advice but we’re ‘unable to get hold of anyone’. My electrolytes weren’t being replaced, my blood sugars not controlled and it took a formal complaint to get the care I needed.

Eventually, weeks later, the doctors got hold of St. Mark’s who confirmed I needed to be transferred to their ‘Intestinal Failure’ unit, one of only two such units in the country, the other being in Salford, Manchester. However, transfers were still suspended due to COVID, and a very long waiting list already in place. It took a while for the referral to be accepted which it now has been, and transfers recommenced a couple of days ago but I’ve been told to expect to wait ‘months not weeks’. St. Mark’s have advised the team here to start me on Total Parental Nutrition (TPN – nutrition directly into a vein) which I’ve been on for two weeks now and meets my total nutrition and fluid requirements.

TPN has literally saved my life, although it’s far from ideal and it’s not without risk. Firstly, a form of central line is required for it to be delivered through with a dedicated lumen for the TPN alone. When I was first brought in here a single lumen PICC line was put in as my port couldn’t be used and was removed, and I was reliant on all IV medications, as I still am. When the decision was made to start TPN, a Central Venous Catheter (CVC) line was put in my neck. This had a dedicated lumen and the TPN was commenced through that, starting off with it running for 24 hours a day and gradually reducing it down to 12 hours overnight. However, a CVC is only temporary and TPN will be my source of nourishment for at least the foreseeable future, and so a longer term Hickman line was put in.

Left; CVC, Right; Hickman Line

Having another tunnelled central line, even more so being so close to the areas of my previous septic ports, absolutely petrifies me, but unfortunately I was severely malnourished and there just wasn’t a choice. TPN also comes with its own potential complications, including; dehydration, electrolyte imbalances, poorly controlled blood glucose levels, infections, liver failure as-well as vitamin and mineral deficiencies.

I’ve never struggled as much mentally as I have in here over the past seven weeks and continue to do so. I’ve currently got an infection in my PEGJ, pain, vomiting and bloating remain unrelenting day and night, I’m absolutely exhausted and to be honest, I’m petrified. I’m not stable enough to go home, and I can’t be sent home from here on TPN which means that I have to remain here until I’m transferred, but at the moment being transferred just feels like something that’s never going to happen. I’m making no progress being here, but I’ve got to wait here to get to where I need to be which is far easier said than done; I know I couldn’t cope at home like this, but it doesn’t make waiting here dealing with what I am any easier.

My Mum and I just wanted to finish this post by saying a huge thank you, from the bottom of our hearts, for the love and support shown by certain friends and family members over the last couple of horrendous months. Your offers and acts of help and kindness have made the world of difference to us in an extraordinarily difficult time, and your messages, cards and gifts truly mean so very much to me and are all up here brightening up my hospital room.

“Strength grows in those moments you think you can’t go on but keep going anyway.”

Coronavirus.

Covid-19. I think we’re all sick of hearing about it, but the truth is it’s impacting all of us in one way or another.

I just really wanted to publish this post today to explain why I’ve taken, and am taking, a bit of a break from blogging. To be honest, with all that is going on, my anxiety is through the roof. It all still feels so surreal to me and I feel like I’m going to wake up and it’d all have been a bad dream, but unfortunately that isn’t going to be the case.

My knee surgery had been rescheduled for Wednesday this week, but obviously in light of everything going on it has been cancelled (for the third time) for the foreseeable future. I totally understand the need to cancel it with the virus putting a strain on the NHS as it is, but I find it so frustrating that we had two chances to get it over with before Coronavirus really kicked off and that’s what I find so infuriating as I’d be recovering now.

Knowing I’m in the ‘at risk’ category for Coronavirus, and how much any ‘normal’ illnesses knock me sideways, I have to take every precaution I can in order not to contract this. This has meant I’ve had to go into ‘self isolation’ for the whole of this week and will have to remain that way for the foreseeable future until this all calms down. My Mum & Dad are now home from work for various reasons and so this means they leave the house as little as possible in order to reduce the risk of infecting me, and we are unable to have any visitors. The anxiety of what’s going on for me is unbearable as it is, but then my mental health isn’t helped further by not being able to leave the house or really hugely distract myself.

The thing is, I’ve had plenty of periods of time where I’ve been unable to leave my house or a hospital when I’m too unwell, but I think it’s the fact that I know I can’t, even if I just want someone to take me for a walk around the block when I feel up to it, and that’s what’s making me feel almost chlaustrophobic.

I’m struggling. I just have to remember this is for my own good, and however long it takes, this too shall pass. I’m doing what I can indoors to keep some sort of a routine and distract myself as much as possible although my concentration is very poor. I’m limiting what news I watch, I’m trying to find short episodes of programmes to hold my attention, I do training with Jeffrey, but this virus is constantly at the back of my mind.

Thank you so much to those of you who messaged, checked up on me & asked if there was anything they could do to help. Those gestures really have gone a long way and I’m so grateful. I can’t wait for all of this to be over and for normality to resume, but until then please take care, stay safe and if you need anyone, even just for a chat, I’m always here.

More of the Same…

After my MPFL Reconstruction surgery was cancelled on the day on Wednesday 26th February, it was rescheduled for the Wednesday just gone (04/03).

Due to being high risk and having a plan that had to be implemented before my surgery, on Tuesday my carer and I once again made the journey over to St. George’s Hospital (which is a bit of a nightmare to get to) ready to be admitted again. Of course despite talking to the Trauma & Orthopaedic Service Manager and the Bed Manager before leaving home, I arrived at the ward as instructed to find that, once again, no one was expecting me. After getting past the confusion, a bed was finally allocated, albeit in a bay with mostly elderly, dementia patients which I found very difficult, particularly given what I went through last week and with the surgery still to face.

On Tuesday evening, both the anaesthetist and one of the surgical team came to see me and gave myself and my Dad faith that everything would finally go ahead this time. My leg was marked up and ready once again, and I was told that due to the risks my case posed I would be first on the list.

My Mum & Dad left home at 0600AM on the Wednesday to be there with me, and then we waited for me to be collected for theatre. Due to being off of my feed and because of my Gastroparesis, my blood sugars had been fluctuating so I had constant IV Glucose to help stabilise them. It took until around 1030AM when the service manager came to see me saying that, despite it being booked, once again there was an issue getting an ICU bed due to emergencies that had come in and, understandably, were in a situation where they needed the bed more than me who needed it as a precaution after an ‘elective’ operation, albeit one to help improve my quality of life. The service manager was to go and continue to fight for a bed and would come back to us ASAP once she knew what beds would potentially come available as people were discharged or able to be stepped down from ICU onto a regular ward.

The wait was agonising; I think deep down I expected the worst although I was hoping beyond hope that the surgery would happen as the mental toll the first cancellation had on me was beyond what I can put into words. The service manager came back and, once again, it was bad news. There was no ICU bed – emergencies had come in who needed them and so there wasn’t one for me to go to after my operation therefore it was cancelled for a second time. I literally begged for anything to be done, the surgeon had even kindly offered to stay into the afternoon to operate then despite her only having a morning list if a bed became available, but we were told there was absolutely zero chance of that happening. I then asked if they’d do the surgery without the ICU bed if I was happy to do so, but, as I expected, I was told no as it was stated in black and white from the high risk clinic that I attended that an ‘ICU bed was essential’, and so the anaesthetist and surgeon couldn’t go against this instruction.

To be honest I just had, and still now have, no words. Nothing can describe the crushing feeling after getting psyched up for a surgery, the anaesthetic, the potential risks, pain, recovery and having to stay in the night before for it just to be cancelled on the day – and all of this for a second time. The thing is, I just don’t see a way out. My surgeon is very specialist and doesn’t practice at any other hospitals, however St. George’s is a major trauma centre and so I feel there will always be a patient who needs an ICU bed more than me having an elective surgery which can be postponed compared to someone with life threatening injuries.

I’m now back home after my second failed attempt at this surgery waiting for another date. I hope and pray with everything I have that it’ll be third time lucky, but who know’s? After the last couple of weeks, words just fail me…

Mental Implications.

Being chronically ill is far from easy (as many things in life aren’t), but I’m not sure the mental implications of what we go through are always realised, by medical professionals in particular.

Being in pain, having to use a wheelchair, spending lengthy periods of time in hospital etc all impact me mentally, but this week I was absolutely mentally shattered when my knee surgery was cancelled on the day it was due to be done. Due to my complex medical history and previous reactions to anaesthetics I’m considered ‘high risk’, which means quite a lot more planning and preparation has to go into an operation before it can be carried out.

I suffer dislocations of multiple joints because of the nature of my EDS, but my knees have been problematic for one of the longest. An MRI I had done a while ago showed that, due to increasingly frequent dislocations, my MPFL ligament is now so lax my patella is no longer being held in as it should be, meaning dislocations are becoming more often such as by just a small movement in the night and the pain is relentless.

I have tried various specialist physios, hydrotherapy, orthotics etc, but nothing has been able to help. I then was referred to orthopaedics locally whom I was ‘too complex’ for, and so they referred me to Guy’s Hospital. After my case was found to be out of the surgeon’s remit whom I saw there, I was referred to one of the top surgeons in the country for these kinds of MPFL reconstruction surgeries (using a donor ligament due to my connective tissue being defective no matter where it’s taken from), which took another year until I got an appointment.

Eventually after the consultant examined my knees and scans etc, I was put on the list for the surgery but my two bouts of sepsis last year delayed this being done, and after having another pre-op, a lengthy appointment at the high-risk clinic with a full pre & post op plan, the date for the surgery was set for last Wednesday 26th February. I was told to arrive the night before for the pre-op plan to begin and then I’d have to go to Intensive Care afterwards (as always) due to previous respiratory issues after anaesthetics.

I phoned the hospital on Tuesday at midday, and the lady I spoke to told me that my bed was ready and everyone was expecting me. Despite this being planned months in advance, I should have thought it was all too good to be true with the luck I have, and I turned up to the ward to find that no one had a clue that I was coming, there were no beds and no one could track down whom I’d spoken to on the phone just an hour or two before. I ended up being put on a different ward as there was no way I could be fitted onto the Orthopaedic Ward where I should have been, and then I had to wait for the doctor to have my medications written up. Finally, 9 hours later at 1.45AM, the doctor came; by this time I had vomited so much bile due to not having my meds etc, I was so dehydrated as I also had to fast so couldn’t even drink and the plan set out by the high risk clinic had only just been started.

I hoped the view from my room window would be a good sign.

The morning of the surgery came (although I had basically no sleep the night before) and I was prepped for the op. I saw the anaesthetist whom (fortunately) was fully aware of my case and had put everything in place including getting a second anaesthetist in to support her for my procedure, I saw the surgeon who marked my knee and said I was first on the list, due to go down in the following half an hour, and so I waited to be collected from the ward.

Unfortunately, this waiting game continued for the following 6 hours as there was no Intensive Care Bed available for afterwards; this resulted in finally, at about 1400hrs, my surgery being cancelled.

I had no words, only tears.

This has happened to me before and it’s never easy, but this has been so long coming, there has been such a build up and preparation for this surgery, and whilst any procedure is nerve wracking, I felt particularly anxious for this one. It’s no ones fault, emergencies happen and ICU bed availability is unpredictable (I’ve been an emergency myself going into ICU and I know they must take priority), but I just felt beyond devastated. I can’t even express how I felt.

Whilst there was nothing that anyone could do, I don’t think that the mental implications of being let down like this are understood. For the surgeons and medical professionals it was just another day at the ‘office’, but for me it was the chance to improve one of my symptoms delayed. It was the sleepless nights over the risks of the anaesthetic going to be dragged out for even longer. It’s the unknown as I still don’t have a revised surgery date. It’s having to disrupt my feed and medication regime for fasting again. It’s ultimately having to mentally psych myself all over again for a hospital stay, a surgery with potential complications, time in Intensive Care, pain, recovery (which I should have started now) and everything else that comes alongside that.

Obviously there are also practical implications as a result of the cancellation too, but it’s really the mental ones that I struggle to come to terms with. All I keep thinking is that the worst bit would all be over now, I’d maybe be home and my recovery would have begun. Instead, I’m stuck in limbo waiting for another operation date with all of the emotions, worry and risks of the surgery to come once again.

I honestly wouldn’t have got through this week without my Mum being there every step of the way; I don’t know where I’d be without her. I’m also insanely grateful for the love and support of our friends and family as, from the bottom of my heart, it’s what keeps me going through the difficult times like these.

So Many Surgeries.

Surgery is never easy to go through; a hospital stay, pain, recovery, risks, complications etc. It’s even more stressful that I have had such severe reactions to anaesthetics which complicates things even further, meaning an intensive care bed is always required afterwards.

It’s just happened that, once next week is over, I’d have had three surgeries in the last three weeks of February. Last week I had to go through a cyst removal, this week I had a port-a-cath insertion on Monday and next week I’ve got my MPFL Reconstruction.

For a ‘healthy’ person, the port-a-cath insertion can be a day case, but I was told I’d have to stay atleast one night in intensive care for observations. I had quite a lot of complications afterwards; sickness, pain, I was totally out of it on the medications, and I ended up spending two nights in intensive care. Even the smallest of surgeries/ procedures which other people can just bounce back from really knock me sideways and take me a long time to get back to my ‘normal from.

When you suffer from chronic pain conditions, acute pain can be extremely difficult to manage. I have Fentanyl patches and take sub lingual Fentanyl for my everyday pain from dislocations etc, so this means when they try to use it or similar to control my post-op pain, I have a high tolerance to it. I also bruise very easily, take a long time to heal and am at an increased risk of infection, so sterile dressing of the wound is even more important that it’d otherwise be.

I’m home now, I’ve had my cyst removed, my new port-a-cath is in situ, and I have probably the most major of the three surgeries, my ligament reconstruction, on Wednesday which I’m being admitted on Tuesday for. I feel so weak at the moment, but once this coming week is out of the way (as difficult as it may be), I’m hoping I can move forwards and things will stabilise… at least I can hope.

Budapest.

Last weekend, Ollie and I went to Budapest for three nights for our first anniversary. We had a lovely (albeit exhausting) break, although the accessibility didn’t end up being as straight forwards as it should have been…

We had to be up at 0330AM on Saturday to get to Gatwick for our early flight, so by the time we arrived in Budapest, I was totally exhausted. On the way, the assistance at the airports worked out perfectly, getting me on and off of the plane using the aisle chair and the ambi-lift. We had our transfer to the hotel and when we arrived and went up to our room, I was greeted by gorgeous flowers and chocolates that Ollie had organised in advance as a surprise for our anniversary! The thoughtfulness of this gesture meant so much to me!

We had planned to explore on that first day, but we were so drained we decided to just relax for the rest of the day in the hotel room so we could make the most of the rest of our trip.

The following day was our first full day, and we decided to go on the hop-on, hop-off tour busses which we had brought tickets for prior to going away. We thought this would be easier as we were told the busses have ramps so it would be easy for Ollie to get me on and off in the wheelchair, and it would be a way for us to see the most possible in the short time that we had there. We walked to St. Stephen’s Basilica which was the first landmark we saw which was absolutely stunning. Despite the weather being freezing cold, it was so bright and sunny which made everything look even prettier!

We waited for the tour bus by the Basilica which was the first stop; when the first bus came along, we explained to the driver that we would need the ramp, when he said that it was ‘stuck’ and we had to wait 20 minutes for the next bus, no apology or anything. A bit frustrated, we reluctantly waited for the following bus which, when it arrived, the driver told us that his ramp wasn’t working either. This really got to me as I should be able to access these busses as easily as any able bodied person, but unfortunately, as with a lot of things, that just wasn’t the case. There was a group of four Irish people who saw what had happened, and very kindly offered to carry me on with Ollie so that is what we did. I was so grateful to these people for getting me on the bus, but as well as the annoyance that the busses were something that I couldn’t access, there was also the humiliation of being carried on with everyone watching when the last thing I want is attention drawn to me.

We rode around on the bus and saw various landmarks, although when we got to some stops, the drivers were going on their break and so we had to change to another bus. Out of all of the busses we got onto (which was probably about 6 in total) only one driver had a functioning ramp. He had to get out of his cabin and manually pull the ramp out, and so I wonder if it was sometimes the case that the drivers couldn’t be bothered to get it out. The treatment was absolutely disgusting and without the kind strangers we met, I couldn’t have got on and off the busses.

As well as the beautiful architecture of the the Parliament Building, one of the most poignant things we saw for me were the ‘Shoes on the Danube’. This is a memorial of the Jews who were killed during World War Two; they were ordered to stand on the river bank & remove their shoes where they were shot so their bodies fell into the river. This memorial represents the shoes of each Jew shot which were left on the bank.

Monday was Ollie’s and my anniversary, and we had pre-booked the Szechenyi thermal baths. The building itself was absolutely beautiful and the outdoor baths are natural hot spring waters which were so lovely and warm which was a stark contrast to the weather!

I did some research before we went, and the website said that there was a wheelchair accessible entrance and also lifts to access the various areas of the baths. However, when we got changed and got ready to go to the outside pools (the most popular part of the baths), we found that neither of the two lifts were working and so the lifeguards decided they were going to carry me down a huge, steep flight of stairs. They said that the lifts needed fixing, but when we saw them they were totally rusty and full of rubbish, looking like they hadn’t been used for a long time. The lifeguards could speak very little to no English which made the situation even more daunting, especially when one of the men at the front of the chair picked it up by the footplate which could have easily detached, but I couldn’t make myself understood! The lifeguards were all at different heights, a lot of them in flip flops on the slippery wet stairs which would only have taken one wrong step for them to slip. The men were also all at different heights, and so I was tipped forwards going down the stairs, holding on to the handles of my chair for dear life as the people waiting to come up the stairs stood and stared.

I was absolutely mortified as it was another situation where so much attention was drawn to me (which I already have enough of being in the chair and with my nose hose), and all I want is to blend in like any able bodied person would. This obviously also meant that I had to be carried back up the stairs in a similar fashion.

It was also disappointing as, whilst we were in the outdoor pools I needed the toilet. We found the disabled toilet which needed to be unlocked by a member of staff, one of which we eventually found who came to unlock the door for us to reveal that the disabled toilet had actually been used to store large, bulky items with everything thick with dust, meaning there wasn’t even space for my wheelchair and I to get into the loo. The employee removed a few of the items, but the toilet was in a disgusting state and with all the stuff that was still in it we couldn’t even get my chair up to the sink to wash my hands.

Ollie and I complained to a manager at the baths who refunded my money and gave me a bag of ‘spa toiletries’, but really I’d have preferred to have been able to access the facilities like everyone else without the humiliation that was caused.

We went out for an Indian meal on the evening of our anniversary. It was lovely although the dishes were very different to how they’re made at home. I was very sick when we got back to the hotel room, but fortunately my tube stayed down and this once it was worth it for me to feel like a ‘normal’ couple and actually go out for a sit down meal.

On our last day I was pretty exhausted (nothing new there) so we had a lazy morning before we had to check out, then just had a wander around a few of the local shops before getting our transfer back to the airport. I thought I’d had my fair share of incidences of inaccessibility for the trip, but I didn’t know how wrong I was! Our plane was delayed by around an hour and a half, and when we finally were able to board and the assistance arrived, they took me to the steps of the aircraft in my wheelchair and asked if I could walk up them. It was pretty clear that I couldn’t (and the ambi-lift and aisle chair to my seat had been pre booked), and so they proceeded to tell me and another disabled customer that they were going to carry us up. I honestly thought (and hoped) that they were joking, but they really weren’t. They said it was ‘too windy’ to use the lift despite it being windier at Gatwick who used it with no issue. They carried us up in the aisle chair infront of all the other passengers staring with just one tiny strap across my lap. It was insanely embarrassing, but more than that absolutely petrifying as these two men struggled to get me and the other lady in the chair up the stairs and onto the aeroplane.

When on board the manager of the aircrew flying with us explained that it was utterly against health and safety to carry us up like that, and taking the conditions into consideration the lift could have been used (like it was at Gatwick when we arrived home). The EasyJet staff filed a complaint about how the situation was handled and told the other disabled customer and myself to do the same which I’m going to do this weekend. Meanwhile, Ollie and I tried our best not to let the lack of accessibility ruin our trip.

It was so lovely to spend time together and explore a new place to spend our first anniversary in before coming home to three surgeries before the end of the month (the first of which was yesterday). I can’t believe where the last year has gone, but Ollie has made it the best year of my life during which so many memories have been made. There is more I’d have liked to explore in Budapest which we ran out of time to see, but I’d like to be assured that all of the ‘broken’ ramps and lifts were sorted first so I didn’t have to endure anymore fireman lifts!

Feeding Tube Awareness Week.

Next week, 10-14th February, is feeding tube awareness week.

As most of you already know, I have an NJ feeding tube. This is a tube that goes up my nose, down my throat, through my stomach and into my jejunum which is a part of the small intestine. The tube bypasses my stomach as, due to my Gastroparesis., my stomach doesn’t function.

I think that having a feeding tube, and understanding the implications and complications that come alongside it, is one of those things that you aren’t aware of until it affects you or someone close to you. At least I know that was the case for us.

There are many different types of feeding tubes including those inserted surgically, and nasal tubes. They can go into the stomach or the bowel depending on the reason why a tube is needed and where the problem area is.

One huge difficulty of having a tube is the fact that, as you need one, it normally means you’re unable to eat, or not eat enough to obtain the required nutrients/ calories etc. In my case I’m unable to eat without vomiting and severe stomach pain. I can inject anti-emetics which aren’t very effective anymore, are impacting my kidneys and I usually still end up throwing up even if it’s hours later and being in excruciating pain. I don’t think it’s realised just what a huge part of life in general and a social life eating is until you’re unable to do it. Just meeting a friend for a cuppa and a cake, going out for dinner for a date night or going out for a family meal are all things that can no longer be done as they should be. I find it upsetting sitting at a table whilst everyone else eats and I’m unable to, and if I do inject and try to eat, I’m up most of the night in pain and vomiting, risking throwing up my tube as I’ve done in the past.

I try not to miss out on things even more than I have to due to my other health issues, so I will go along to a meal even if I’m unable to eat; it’s one of the most difficult situations sitting at a table watching everyone enjoy their meals when you’re desperate to be able to eat too without the consequences! However, if I do eat I’m always wiped out due to the side effects of the anti-sickness injections, and constantly on edge incase I’m sick before we get home and can’t get to the loo etc.

Having a tube/ tube feeding couldn’t be further from being the ‘easy option’ and for me it became a necessity that I honestly wish I didn’t have to deal with.

Having feed can be a messy business. The bottle can leak, there can be a fault in the giving set, or you may just connect it slightly wonkily and it’ll leak, leaving sticky feed everywhere. As well as this, as feeding overnight didn’t work for me, and I can only tolerate a very slow rate of feed due to the dysmotility of my GI tract, I’m connected to the feed for a long while throughout the day. This means that I feel like a dog on a lead, lugging around the drip stand or backpack with me as I’m constantly attached.

In addition to the feed, my medications also go down my tube. This means that all of my tablets have to be crushed, the capsules opened and emptied and liquids measured out. The water the meds are dissolved in has to be sterile, and as I’m unable to get this on prescription it means it has to be cool boiled water. The fragments of the tablets, even though they’re as small as possible, often cause blockages in my tube, but it’s a fight to get the meds that come in liquid form as a liquid due to them costing the NHS more. After a fight I have those which do come in a liquid form, but the others we just have to crush.

This is all obviously a time consuming process and has to be considered if we are going out for the day as they have to be prepared in advance and taken with us. This can also be messy as the syringes are often leaky and the fluid can leak out the end of the tube inbetween medications and flushes being administered. Having my medications down my tube also means I have a lot more to carry with me if we go out and even more if we go away. Too much fluid down my tube at once makes me sick, and so we have to get my medications and flushes down to the smallest volume possible.

Furthermore, having a tube stuck to my face is quite difficult to deal with, for more than one reason. Firstly, just the fact that I have a tube hanging out of my nose which is visible to everyone is difficult. Some people stare at it but don’t mention it like it’s the ‘elephant in the room’, and others make comments such as stating the fact that it’s there (as if I could forget!). I’m fortunate that those close to me who understand what it’s for just make me feel better and treat me as though it’s normal, but most trips out are full of stares and people making comments. I’m so not used to this as all of my scars and my stoma bag etc are hidden under my clothes and so are not visible to others. In addition to this, whilst I know my skin is particularly sensitive and the face is a generally sensitive area, I’ve found it a nightmare finding dressings/ tapes to secure the tube that my skin doesn’t react to. Everything we have tried has left my face red, almost ‘burnt’ and really sore, or I just haven’t been able to tolerate them for very long. However, now we are trying different samples although if we find a suitable one they have to be purchased as they aren’t available on prescription.

Having a nasal tube also makes everyday things such as washing my face, applying make up, washing my hair and brushing/ straightening and tying my hair up so much more difficult. The heat from a bath or shower and the moisture from washing my face or hair often makes the dressing holding my tube in place peel off or loosen, and when my mum or carers help wash my hair, we are constantly trying to hold my tube out of the way so it doesn’t get bundled up and shampoo’ed and conditioned! When I do my make up I usually change my dressing then as it’s easier than trying to put make up on around it, so then I have to try to apply foundation etc whilst holding my tube in place but in various positions to get it out of the way.

As I’m sure you’ve understood from this post, living with a feeding tube, coping with not being able to eat and dealing with feeds, flushes, medications etc is far from easy. However, although I’m going through a difficult patch with feeding at the moment and losing weight, a feeding tube has allowed me to absorb my medications much more effectively than I was able to before, it enables me to run feed which gives me much needed nutrients, has helped to stabilise my electrolytes and ultimately reduced (although not eliminated) my vomiting and risk of dehydration etc. I’d much rather be without my tube, but at the moment, despite the many struggles that come alongside him, Norman the nose hose enables me to stay out of hospital more than I’d be able to otherwise and for that I’m very grateful.

Life’s Not a Race.

As hard as I find it to remember, life is not a race.

It’s not that I want to be further ahead than other people, I just want to be where I believe I should if things were in my control. I would have graduated a couple of years ago, I’d have maybe done a masters, but I’d be working now. I’d be having a day starting off being woken up by an alarm clock, going off to work, coming home, cooking dinner and going to bed. However, things healthy people moan about and may see as ‘mundane’, such as the early mornings, the daily commute, the day at work etc, are the things I’d do anything to be doing as that would mean ‘normality’.

My day starts by being woken up by pain, my stoma bag needing emptying, or by my carer with my meds. I then spend my days with no purpose; being unwell, entirely fatigued, going back and forth across London to hospital appointments, having procedures done, surgeries, setting up my feed and doing my medications etc. I’m desperate to have finished uni, but instead I sit at home being happy seeing all my other friends graduate whom I’m elated for, but inside I’m utterly broken that I’m not in the same position. People tell me getting a degree isn’t everything, that I can go to places other than Cambridge, and whilst I know they mean well, I want to complete my degree at Cambridge, it’s just unfair that my health is preventing me from doing so. It was my dream to get to Cambridge, so why won’t my body let me live it?

If I had graduated now and was working, I could be looking at moving out, moving on with my life like I should be… I’m 23 years old and I feel like I’m a prisoner to my medical conditions. Of course just because I see other people buying their first properties it doesn’t mean I have to, but I should be in the position to if I wanted to. I’m so pleased for those getting married, having children etc but I feel so behind where I should be and where I want to be.

The thing is, me not being where I’d like to be because of my health doesn’t just impact me, and I think that’s even worse. Firstly, my ill health means that I have to rely on my parents more than I should have to, and so their freedom is reduced and their lives impacted by having to factor in whether or not I’m being cared for before they’re able to do anything. Ollie and I would love to be spending more time together, but even if we wanted to we can’t even think about buying a place together until I’m in more of a stable position… I hate this so much.

I don’t want people to think that they have to do things at a certain age; if you want to go to university at 30, there’s nothing wrong with that, if you want children later in life, that’s fine, it’s just that that isn’t what I want to do and the lack of control I have in my life is something I find extremely hard to accept.

Life’s not a race, but I definitely feel like I’m losing at the moment.

Absence.

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

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

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

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

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

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

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

Same Old.

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

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

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

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

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

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

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

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

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