When does it end?

My blog posts have had a very negative tone over the last few weeks which I hate to be the case, but of late life has just been horrendous. Every time I try to do something that will help one problem, another issue arises.

Last week I had an iron infusion which I have waited months for; I’ve had one before which was a couple of years ago and I was an inpatient at the time so I don’t really remember any impacts it had. However, after the one I had last week I have been so poorly. I’ve been constantly going hot and cold, having to change my pyjamas multiple times a day as I’ve been dripping with sweat yet shivering, been more exhausted than normal, had severe stomach pain and gastro issues including problems with my stoma etc.

This meant that all the plans that I had for last weekend and had been looking forward to had to be cancelled. On Saturday I was meant to be going to an afternoon tea for a family friends’ 90th birthday, and on Sunday it was my Nan’s birthday for which we were meant to be going out for a family meal, yet I could do none of it. I had to miss the afternoon tea entirely, as did my Mum, as she had to stay with me to look after me, and on Sunday we had to cancel the meal. In the end, just my sister and her boyfriend took my Nan out for lunch whilst I stayed on the sofa. They popped in afterwards so I could see my Nan open her presents although I really struggled to even stay awake. I was absolutely gutted.

To be frank, life is shit at the moment, and something as simple as just leaving the house to celebrate a loved ones birthday can’t be done because of my ill health. We can’t be totally sure that it is a reaction to the iron, but it is what it is thought to be due to.

Despite this, I’ve had to get out for a couple of important appointments this week by which, fortunately, my symptoms had reduced enough for me to leave the house although I still feel far from back to ‘normal’. On Wednesday I was supposed to see my colorectal surgeon as I’ve been having issues with waste bypassing my stoma, and urgency and accidents have returned. However, despite my Mum taking the day off of work, me being assured that we would see the consultant himself after a wasted visit to a registrar last month, and us making the journey to UCLH, the consultant had decided to get cover for his clinic at the last minute, and so yet again I saw another registrar. With all due respect, this doctor had no idea of my case, no idea when I had my ileostomy formed and also admitted to us that he didn’t know anything about Ehlers-Danlos Syndrome. All I feel like I got out of the appointment was having educated one extra person about EDS, but I’ve now been put on the waiting list to have my ileostomy converted to an end ileostomy rather than the loop that it currently is, which will hopefully stop the distressing problems I’m currently dealing with daily.

On Thursday (yesterday) I had to endure yet another colonoscopy. I have lost count of the number of these that I have been through, and yet they’re still as stressful as ever. I was told that the one I had in December would be to give us the answers we needed, however apparently the results weren’t sufficient and so it had to be repeated only three months later; the thought that this one could have been avoided made it even harder to cope with. Yesterday, it was a struggle to get through, the pain was so severe and despite the sedation and pain meds, it didn’t even take the edge off of it. Many ulcers, bleeding and inflammation was found, and it is thought to be either a flare of my Crohn’s disease or diversion colitis due to part of my bowel not being in use although we have to wait for biopsy results for this to be confirmed either way.

This week has been so difficult to deal with, and every time I think things can only get better, life seems to take it as a challenge to prove me wrong. I now have a cold and sore throat which I always find difficult to deal with on top of my everyday symptoms, but in addition to that and what I’m finding really hard to cope with is the fact that I’m still having night sweats and really severe calf pain which we still don’t have a real cause for. Yet again, I’ve had to cancel all my plans for this weekend, and whilst I’m fortunate that Ollie and Thea have been understanding, I was so looking forward to what we had planned. Yet again, all I’m doing is letting people down.

I’m truly not sure how much more I can cope with, I’m absolutely desperate for a break yet things have just been relentless. I crave normality, I crave some days of ‘better’ health just so I can have some sort of a life rather than being stuck indoors on the sofa. I try to remain hopeful, hopeful that there are some better days ahead and life won’t always be as unbearable as this, but things just have to improve soon. All I do is let those around me down; I can’t keep plans, I am unable to do anything apart from stay indoors, and I’m just constantly ill – I don’t understand why anyone would want to stick around. I’m praying things get better, they have to soon because I just can’t carry on like this…


A burden. It’s what I constantly feel like.

It’s really difficult relying on other people for so much, and it’s something I’ve struggled with from the beginning of my illness. Even before I was unwell I wasn’t good at asking for help, but I was able to be independent and get on with things myself. However now I’m so much more reliant on other people, and whilst my family do everything in their power to not make me feel like this, I just can’t help it. I feel like a burden physically, emotionally and socially; it impacts every single aspect of my life. I can’t go anywhere without someone needing to take the time and effort to set up and push my wheelchair, plans are hard to make as so much needs to be considered and I can do so little for myself.

It’s hard enough to ask someone for help once in a while, let alone having to ask for it constantly for simple tasks that I never imagined at twenty two years old I wouldn’t be able to do myself. My parents and Ollie are amazing at doing things for me automatically without me having to ask, making the situation feel more ‘normal’, but no matter how hard I try, I can’t help but feel like this. If I wasn’t here people wouldn’t have to constantly go out of their way to do things for me, and I can’t help but think like this. Others are willing to help at the beginning, but as the reality hits that my illnesses are chronic and so don’t go away, they lose interest and so abandon me and therefore get away from the inconveniences of having a friend who is unwell.

As you know, I have carers but the whole situation with them is such a mess, and my thoughts of being an inconvenience are even more prominent with them looking after me. There isn’t much continuity, carers are leaving, unsuitable ones are being sent, and this doesn’t help my needs being met and so in turn doesn’t help how I feel, yet I’m so beholden to these people. Although it may be my current mindset, I just feel like everyone is so unwilling to do anything, despite being paid to do the job. When I feel brave enough to ask for something, my sentence always starts with ‘I’m really sorry but’, or ‘When you have time’ and I just feel like every single thing I ask for is a nuisance to have to carry out.

I just don’t know what the answer is, I don’t think there is one. I just want to be the person that I was before these diagnoses, the person who was independent, had a purpose in life and could do things for myself; I mourn for that. Yet my life has been turned upside down, and suddenly my illnesses don’t only change my life, but also impact those of the people around me. I’m ridden with guilt for constantly having to ask for things. I can’t do my share in various tasks, even some of the aspects of looking after Jeffrey who is my responsibility I’m unable to do, and I’m here feeling like I’m just tearing everyone’s lives apart.

This feeling of being a burden is having a further negative impact on my mental health, as I feel anxious and more depressed that my needs inconvenience people, even if it is their job. I’m probably very sensitive at the moment, and I need to change my mindset, but that is so much easier said than done. I can’t try to adapt to my new ‘normal’ and re-build my life whilst I feel like this, and I just feel like my life will be like this forever.

I need to let those who are willing to be there for me to do so, to help support me out of this rut that I’m currently stuck in. I keep trying to think that my illnesses aren’t my fault, yet still if I wasn’t here my family and friends wouldn’t also have their lives altered by the implications of them. My loved ones have had to take days off of work, lose pay, have sleepless nights, spend countless hours at the hospital and go through the stress of me being so poorly just to name a few, yet they stick by me no matter what; I love them more than I could put into words and I genuinely wouldn’t be here without them. I’m eternally grateful and indebted to them. I need to focus on the positives, I need to draw on what I can do and accept help for what I can’t. It’ll be hard, but it’s what I need to try to do in order to ever move on from this and rebuild my life. I want to no longer feel like such a burden which is currently taking away so much enjoyment and fulfilment in my life.

A Week Post-Op Number 2.

I always knew that going through a second recovery just six weeks after my first op wouldn’t be easy, but maybe I underestimated just how much of a challenge, both physically and mentally, it would be.

I was admitted to hospital on 28/02 and had my surgery on 01/03. After the operation I was taken to intensive care where I suffered numerous episodes of respiratory failure and needing to be intubated. The pain was also immense despite the analgesics I was given whilst asleep, and so I was given Ketamine before a PCA (Patient Controlled Analgesic) was set up so I could press the button to administer more pain relief as and when it was needed, whilst my nurse could give me other pain relief as needed in between. In addition to this, I also suffered constant vomiting.

It was a tough, entirely sleepless, first night in ICU, pretty much constantly being sick and the pain being hard to control, although fortunately this eased with time and altering medication regimes. Late the following day my breathing had stabilised enough for me to be moved to the ward, and so the nurses, consultants and pain teams continued to work there to make me as comfortable as possible. I wasn’t discharged from hospital until late on Monday as there was the query of an infection, but I was sent home with antibiotics as a precaution. The admission wasn’t an easy one, but with the constant love and support of my family and friends, who I’m forever indebted to, I got through.

Coming home from hospital, no matter how long the stay, is always an overwhelming experience. There is a sense of being overfilled with joy to be back in the comfort of your own home, having your loved ones around you and for me it means I’m back with Jeffrey, but it’s also being away from that around the clock medical care and support which I’d so heavily relied on, even just the day before being discharged.

Since I’ve been home, I’ve been stuck in the same four walls, spending every day on the sofa in my PJs. This has been so hard as I feel like, whilst everyone’s lives are carrying on, as should mine be, my world has stopped still. I haven’t had the energy to get dressed, or been well enough to leave the house, and this has been so detrimental to my already struggling mental health. I’m extremely grateful for Deborah visiting this week to make a change to one of the days and it was so lovely to see you. In addition to this, dealing with the discomfort from the operation site has been a challenge, and getting comfortable to sleep or to even rest has been really difficult with the stitches all being on my back.

In terms of the device actually working, it was activated before I left hospital on Monday, and to be honest it has been a bit hit and miss since getting home which has been an additional worry. I’m hoping it’s a case of my body having to get over this second surgery and getting used to the device again, as sometimes I’ve been able to empty some of my bladder, and sometimes I haven’t at all. However, my minimum aim is to get back to emptying around 70% of my bladder again which I could throughout the trial, meaning I only had to self-catheterise once or twice a day.

I knew this period of time wouldn’t be easy, but now I’ve just got to get through it with the faith that there will be better days ahead (with hopefully less catheterising!). Thank you so much to everyone for constantly supporting me throughout this time; I wouldn’t be getting through without you. If anything, from this recovery, I’ve learnt that ‘You don’t know how to be strong you are until being strong is the only choice you have’.

Difficult Decisions.

I’m currently admitted in hospital ready for the second stage of my Sacral Nerve Stimulation operation which is being done tomorrow, but after a clinic appointment I had last week I have a very difficult decision to make about yet another surgery.

My knees and hips were the first joints I had issues with before I knew I had Ehlers-Danlos Syndrome, and my knees have become increasingly problematic over time. In particular my right knee is very painful and I have constant dislocations throughout the day and night, waking me when I’m asleep and really reducing my mobility. I had an MRI scan on it which showed a very lax Medial Patellofemoral Ligament (MPFL which holds the kneecap in place). It also showed my kneecap not being aligned and a very shallow femoral groove which is the space the kneecap sits in. This all results in the fact that my knee is extremely susceptible to dislocating.

I have tried everything and anything to help reduce the impact of my knee problems; I’ve seen countless physiotherapists, had hydrotherapy and exhausted orthotics departments, trying various supports and braces but just nothing has been able to stabilise it.

I saw an orthopaedic surgeon at Guy’s a while ago who felt my case was beyond his remit, and I was referred to a specialist at St. George’s. After waiting nearly a year for the appointment I finally saw this particular orthopaedic surgeon last week. She examined my knee and confirmed all of the issues with it, and said that there are a couple of types of surgery she is able to do, but due to other factors of my ill health, the most suitable one would be an MPFL reconstruction. This means using ligament from elsewhere to reconstruct the MPFL ligament to hold my knee in place, hopefully reducing the risk and frequency of dislocations. However, using my own ligament wouldn’t be ideal for me as whatever ligament is used from my body would still be faulty due to my EDS. Therefore, in my case, this operation would be using an ‘allograft’, meaning that donor tissue (from a deceased person) would be used to reconstruct my MPFL ligament. I wanted a chance to discuss things with my parents, and so I’ve been put on the list for this surgery, but I’m going back to see the consultant in a fortnight to make a final decision.

If it’s successful, having this done will make a huge difference as my knee dislocating in the night constantly wakes me up whenever I actually manage to get some sleep. However, I don’t know if it’s a problem I should prioritise with so much else going on, including my shoulders getting increasingly weaker and frequently dislocating. It’s such a difficult decision to make, especially with it having no guarantees, although the four EDS patients the surgeon has done this operation on before have found benefit from it.

I think for the time being I need to get through this admission and the surgery I’m facing tomorrow, but the knee operation is still something I’m going to need to have a serious think about in order to come to a decision about it that, either way, will have future implications on my quality of life.

Playing with Lives.

I’ve had a lot of hospital appointments this week and have a lot coming up at the start of next week too before I go into hospital on Thursday (28/02) ready for my next stage of bladder surgery. I crammed lots in so I can have a few weeks without much on after my operation to be able to recover. However, whilst the appointments have been relentless, I’ve really felt like I haven’t been considered as a human being, just a number in the system, and ultimately like my life is being played with.

I had to go to Addenbrooke’s this week for a check for my Crohn’s which had to be brought forwards as I’ve had some symptoms which could indicate a flare. I took along my biopsy results from my colonoscopy I had at UCLH in December to investigate the issue so the Crohn’s specialists could analyse them and try to work out if it was a flare or not. My Crohn’s consultant absolutely devastated me when he told me that the biopsy results didn’t tell him what they needed to know (despite the camera being done to investigate this exact problem!), and so the colonoscopy would have to be repeated at Addenbrooke’s in the next 4-6 weeks.

These tests are gruelling, and I find them difficult enough to go through once, let alone now needing another one just a couple of months later for the exact same purpose as the initial one was for. My hands are tied as I have to have the camera to investigate my symptoms as they need to be treated, yet I was just told I need the colonoscopy casually like it’s nothing at all. This is a test that should have been out of the way and I should be now receiving treatment for the issues, yet we still haven’t moved forwards, and no health professional seems bothered by the fact that I’ve, yet again, got to face another colonoscopy only two months after the one that should have given us the answers we need. It’s not the doctor that has to go through the tests, deal with bowel prep and enemas, nor be left waiting even more months for answers… it’s just me.

The consultant said that it could be a Crohn’s flare, but he thinks that my symptoms are most likely due to ‘Diversion Colitis’. The consultant said that he wants to do the colonoscopy personally to ensure we get the relevant results this time, but having to go through this again is so insanely frustrating.

As my regular readers know, I’ve been having a lot of issues with nausea, vomiting and stomach pain associated with eating. I’m now losing weight as I’m able to tolerate increasingly less, and I had an appointment at the Royal London this week which is where I’d like my Neurogastro care for this to be rather than at UCLH where I don’t feel like we are getting anywhere. I was told that they’d had an MDT, and ultimately felt that my care should be kept at UCLH as I have a couple of my other consultants there, but my care is still fragmented and so I don’t see having my care for this being at the Royal London where I feel I’m better understood and supported. However, I have to go to UCLH on Monday to discuss the outcome of their MDT and how they plan on going forwards, and if I’m not happy I have to email the Royal London to explain and then things will be re-discussed.

The thing is, I’ve been struggling with these symptoms since last April, but they’re slowly going downhill and I’m caught in the middle struggling at home with the symptoms, Nothing is moving forwards and whilst I appreciate how stretched the NHS is, I’ve already waited so long and now I have to wait even longer. I went to the Royal London today with so much hope that we could start to put a plan into place, but instead we are no further forwards and I have to go to yet another hospital appointment on Monday to discuss things with the UCLH consultant. It’ll be decided then who will be my consultant going forwards for this issue despite me wanting it to be at the Royal London. This means another day of traipsing into London, sitting around in a waiting room, but more than anything it’s even longer to wait until anything is put in place to help me and I’m so desperate for this as I can’t cope with the way things currently are.

All I can do now is wait until Monday to find out UCLH’s opinion and outcome of their MDT. I’m keeping everything crossed that it enables us to move forwards in some way, but I’m really not holding out much hope. All the while this has been going on, I’ve been caught in the middle left with very little medical contact; it’s okay really because to these consultants all I am is a number in the system, and they have the power to play with lives – and that they certainly do.

Mental Health.

I find the mental side of my health problems really difficult to talk about, and so this has been one of the most challenging blog posts for me to write, but I think it’s an issue I need to address, even though I’m only skimming the surface of it.

I’ve always said from the beginning, I’d rather deal with more physical symptoms than the mental implications of what I deal with day in, day out.

Anxiety and depression have been huge problems for me, particularly since my health has deteriorated; over the last year my depression has been at an all time low. I’m actually ashamed to say that I struggle with self harm. It seems a crazy idea when I have enough physical problems, but it’s been an unhealthy habit that I’ve turned to in order to cope with everything that has been going on, and ultimately I do it in order to stop myself from doing anything more drastic. I don’t heal well, and I have a lot of pain, yet I’ve found release from cutting myself. It’s a problem that’s been gradually getting worse, but a coping mechanism that I unfortunately currently rely on.

Over the last couple of weeks, suicidal thoughts have been dominating my mind, and I genuinely don’t want to be here anymore. It’s really difficult because my Mum has and continues to be my absolute rock throughout everything, and does absolutely everything in her power to make my life more bearable, but there are just some things that people can’t help with. I have lost friends, I have to rely on a wheelchair and carers, I have to deal with a stoma bag, I’m in pain daily, I can’t eat without being sick, getting back to university seems an unachievable goal, I’m facing surgeries, I’m constantly at hospital appointments, and this just isn’t the life that I want to be living, yet there is nothing that I can do about it.

On Wednesday night, in a bit of a crisis with just not wanting to be here anymore, my carer took me to the Crisis Cafe. This is a safe space that you can visit if you’re ‘experiencing severe emotional and psychological distress’. It was a very calm environment, with just myself and my carer there with two members of staff talking things through with me. In a way it felt good to get things off of my chest to people completely removed from my situation, but at the same time going through everything stirred up so many emotions, and I just feel totally broken, spending most of my time in tears ever since.

The psychologist I currently see weekly as part of the Community Mental Health Team is currently away, but the on call member of staff has been making contact with me daily until she returns since she heard I was suicidal. When my member of staff is back at work I’m hoping we can put more structured, intense support in place with a clear crisis plan for times when I feel like I really can’t carry on, and maybe now she will understand the severity of my current situation. I’m also trying to get my anti-depressants reviewed to see whether or not they can be optimised to boost my mood.

I’m doing absolutely everything in my power to help myself, but I just feel like I’m not getting anywhere. I find it really difficult to talk about all of this in person, and writing this post has been so very challenging. However, I suppose a message of it is that it’s okay to not be okay, and this is also something that I need to accept. It’s okay to break down and cry as long as you manage to pick yourself up and carry on. My Mum gives me a reason to live, and the love and support I’ve had from our family and friends who have been there for me has been so gratefully received.

I just need to remember, be it mental or physical health; “Your illness does not define you. Your strength and courage does.”

Feeding Tube Awareness Week.

This week is Feeding Tube Awareness Week, a week that is even more relevant to me after a gastroenterology appointment I had on Monday.

This week aims to increase awareness and knowledge of feeding tubes and enteral feeding. Enteral feeding is being fed via a tube when sufficient nutrition cannot be obtained via mouth. This can be for a variety of reasons such as someone not being able to swallow safely, problems with their stomach or medical conditions such as Crohn’s Disease. In my case I have Gastroparesis symptoms linked to my EDS, and so for a while now have been being sick after eating.

Last year after my ileostomy surgery I developed Gastroparesis which resulted in me vomiting everything I ate. After losing 10% of my body weight, the consultant decided that I’d have to be artificially fed via an NG tube. It was extremely uncomfortable and a very difficult time; it wasn’t ideal as I had to push it back down quite a few times after vomiting it up, but being fed using a very slow rate meant my vomiting reduced and my weight stabilised.

I eventually found a medication which reduced my vomiting, leading to periods of time where my eating improved and, after around four weeks I was able to have the tube removed and obtain sufficient nutrition orally. However, the period of relief was short lived where my tolerance to the medication built up quickly, and so I was frequently increasing my dose of a very strong drug in order to be able to keep food down.

It wasn’t long before my worst fears became a reality; I had already exceeded the maximum dose of this drug as well as adding in other antiemetics, and my body is back to rejecting all food again apart from sugary sweets which can just dissolve in my mouth. Having emetophobia, being sick causes panic attacks and really is the one symptom that I can’t deal with, and so this is a very difficult time. I’m keeping my calories up as much as possible with sugary drinks and sweets, but my weight has been steadily declining. On Monday it was decided that I’m going to have another NG tube put down to gain some nutrition artificially whilst I try to build my eating up again. I need to get off of the strong antiemetic but the others I’ve tried have been totally ineffective, so I’m not sure how I’m going to do that, but I’m willing to do anything in my power to be able to eat normally again as it’s such a huge part of life lost. I’m waiting for a date to have the tube put in, and until then I’m carrying on living on what sweets I can tolerate and not much else.

Feeding tube awareness week aims to raise awareness of all types of feeding tubes; some people with tubes aren’t able to eat at all, whereas some are able to also take some or certain food orally.

The type of tube I’m having is one of two ‘nasal’ feeding tubes; this can be either a Naso-gastric (NG) tube, or a Nasojejunal (NJ) tube. NG tubes go through the nose and into the stomach, whereas an NJ tube goes further and ends in the jejunum (a part of the small intestine). With me they are going to start with an NG tube with the hope I won’t continuously vomit it up, and we will see how I go with that; I’m hoping I’ll be able to gain enough nutrition from it and be able to have it taken out before too long, but I’ll just have to see how things go.

There are other feeding tubes which are inserted surgically such as a ‘Percutaneous Endoscopic Gastrostomy’ (PEG), but I’m hoping I won’t have to progress onto one of these, particularly with how I react to operations and anaesthetics. The truth is I just don’t know what the future holds, but I’m trying to take things a day at a time.

What A Week.

This week has been a real mixture of highs and very difficult lows.

Maybe I’ll start with the positives, as, after not being able to pass a drop of urine for over three years… I CAN WEE!

Okay, so things aren’t perfect, but I have made progress! I’m on the second of the three programmes, and to begin with, just like with programme one, there was no change whatsoever. However, I have slowly started to get a sensation when I need to wee; It’s not like what it was or as strong as when I could wee normally, and the sensation doesn’t always come, but I sometimes now have an idea when I need to empty my bladder.

As well as this, I am now able to wee a little bit sometimes. By this, I mean, I always try to wee normally before I catheterise when I go to the loo, but I’m not able to every time – in the last week I have been able to wee five or six times. Also, I’ve not been able to completely empty my bladder when I am able to wee yet, but instead can wee normally a bit, but then have to catheterise to empty the remainder of my bladder.

I spoke to one of the specialist nurses this week and they’ve said that the programmes working can be progressive, and so things could continue to improve on this programme. Also, they said that the programmes can lead to some improvement without my bladder function being back to ‘perfect’, so it could mean that I may have to catheterise sometimes still, or maybe once or twice a day to empty what is left in my bladder and be able to ‘wee normally’ as much as I am able to in between. I’m hoping things will improve further though, as at the moment, even though I’m able to wee a bit, we don’t know whether it will, or how much it will improve further. I also have programme three still to try and that may or may not work better, I’ll just have to see.

One of the main concerns I’m having at the moment is the dressings over the wire which is coming out of my back. I have a lot of issues with allergies because of my Mast Cell problems, and a lot of plasters which the hospital usually use I’m allergic to. With the other two incisions in my back I’ve been able to take the dressings off and the stitches have been cut out. However, with the wound where the wire comes out, the initial plaster the hospital put on cannot be removed as there is the risk of dislodging the wire. This means that when the plaster starts to peel (which happens frequently with my temperature regulation problems), we have to put more on top. I’m still very uncomfortable, what with the wire on one side on my back, another incision in the middle and a further one on the other side, and as I have my ileostomy bag on my front I really struggle to get comfortable despite my Mum trying to help alleviate the discomfort with pillows.

Another thing I hate is not being able to bath or shower, and at the moment with my joints etc I’m not able to even sit on the edge of the bath and put my feet in it and wash. Therefore my carer has to help me have a strip wash downstairs and at 22 years old I never imagined this was something I’d have to accept to happen. I’m also having to still use the bedpan during the day but I just pray that things continue to improve and it’s been worthwhile going through all of this.

The highlight of my week was a gorgeous gift arriving from lovely Diane who I met on a Facebook support group. It was the most wonderful surprise and such a thoughtful gesture. Thank you so much Diane, it’s going to come everywhere with me in my handbag.

The not so good side to this week has been my mental health – I’ve been at an all time low, crying myself to sleep at night and quite frankly just not wanting to be here anymore.

It’s crazy because people expect me to be feeling more positive now the SNS is showing signs of working, and of course that’s a ray of sunshine, but the truth is the rest of my ill health continues to be relentless. I’ve been unable to eat a meal without being sick for months now, either eating and dealing with vomiting and severe pain, or not eating and still feeling extremely nauseous. The only thing I can tolerate are certain sweets as the sugar is absorbed quickly and I don’t bring them back up. I didn’t realise how big a part of life eating is until this issue arose; I can’t go out for dinner, meet for a coffee or just enjoy cooking a meal, and living on sweets really isn’t as great as it may sound.

As well as this I’m permanently exhausted, in a lot of discomfort with the wire in my back, have joint pain, aren’t able to do very much at all, can’t get out very easily and as a result my mental health is really suffering. I haven’t been able to see the psychologist I usually see for the last two weeks and she’s now away for a fortnight – I have no other support apart from being told to go to ‘the Crisis Cafe if things get that bad’. The thing is, it’s my situation that I’m struggling with, how isolated I am, but more than this it’s that I should be revising for my ultimate goal of going back to Cambridge; However, I’m just not in a state to be able to do it, which in turn is having a further detrimental impact on my mental health because I’m desperate to get back there.

I will get through this somehow, there is no choice, just at the moment I can’t see a way forwards. I need to express my gratitude firstly to my wonderful Mum, but also to our friends and family for your constant love and support; I’ve never needed it more, and I can’t begin to express how much it means to me. The visits, gifts, messages and phone calls really are what get me through, and my beautiful get well cards brighten up the room.

Thank you all so much from the bottom of my heart, surely things can only get better from here.

A Week Post-Op.

The past week has been and continues to be a real struggle, both mentally and physically.

I was admitted last Thursday (17th) for my stage 1 SNS operation the following day. The day came, and my Mum and one of my carers arrived; I was prepared for surgery and changed into a gown, waiting to go down as I was first on the list. I’d seen the surgeon and the anaesthetist, the specialist nurse had visited, my back had been marked up for the wire and where the permanent implant would go should the trial be successful, and I was waiting to be collected for theatre. This was when one of the nurses came up and said that they didn’t have an ITU bed and so I couldn’t go to theatre until there was one. I were to wait on the ward and would be told if one came up, but if not I’d have to go home and wait for another date. I was absolutely gutted, and this really was an additional stress that I didn’t need.

I was so very grateful when the nurse came back not too long after, telling me a bed had become available and I was going to be collected for theatre imminently. I couldn’t have coped with the surgery being cancelled after getting so worked up for it. I was taken down to theatre, the surgery was performed and when I woke up in recovery the crash calls due to respiratory arrests started, as has been the case after most of my anaesthetics. Recovery staff tried to get my pain under control, but I was taken to intensive care where they could better deal with the state of my breathing. The crash calls continued, my Mum wasn’t allowed in to see me, and in the end I had to be intubated again which was all a very traumatic and upsetting experience.

Once things stabilised we worked further on getting my pain under control, although this was difficult as the staff were trying to balance reducing my pain, with the potential impact of opioids on my breathing. My Mum was finally allowed in which I was so grateful for as I was a tearful mess by this point, and fortunately things continued to stabilise although the pain persisted. I spent the night in ITU being monitored and with pain relief being administered periodically.

I spent the following day in ITU as well, before being able to move to the ward in the evening. I spent a further night there, and then was allowed home the following day to continue my recovery there. This was because the chance of picking up other infections with being so immunosuppressed is so great, and so as soon as I’m stable enough to be discharged it’s much safer to be at home.

Coming home and realising how little I’m able to do at the moment has been really difficult. I’ve been in a lot of pain with the incisions in my back with very little energy, and so spent every single day either in bed or tucked up on the sofa. My carers and my Mum have literally had to do every single thing for me, and I’ve even had to use a bedpan as I haven’t been able to get to the toilet. All of this is really difficult to deal with, on top of being stuck in the same four walls all day, and the side effects of all the drugs and anaesthetic in my system, my mental health has been at rock bottom.

In terms of the stimulator itself, we switched it on with the support of the specialist nurse on the evening of my surgery. I was told to turn the stimulation up until I could feel a small ‘tingling’ sensation in my back where the wires are. I lost feeling of this quickly, and so continuously had to switch it up until I got to a fairly constant high level which I’m on now. There are three programs on the trial stimulator all of which stimulate different areas of the sacral nerve, and different settings work better than others for each individual patient. We started on Program 1 which I’m still on now, and I’m on a fairly high level of stimulation. I was told by the nurse that even if it’s the right setting for me, it may not work straight away but can take time so we are still on that now. However, I’ve had absolutely no change in my bladder function or sensation yet which I’m gutted about, and has made the whole process of going through this surgery and recovery more difficult to deal with.

However, as hard as it is, I can’t give up hope as we still have two settings to try; It’s looking like I’m going to change to program 2 later today so I’m keeping everything crossed that I find a setting that works. Before the operation the surgeon told me the procedure has a 70-80% success rate, and so I’m just praying I’m not in the other 20-30%, although she did say that my other health conditions complicate things further.

I can’t quite get my head around the fact I’m going to be going through stage two surgery in five weeks whether this is successful or not as I’m struggling so much at the moment to get over this one; however there isn’t a choice and I’ll do it somehow (plus I can have a bath once the external wire is removed which I can’t wait for!).

I can’t begin to express my gratitude for the help and support I’ve had over this last week. My Mum for being there physically and emotionally 24 hours a day for me, being my rock. My carers for doing absolutely everything for me, Jeffrey for not leaving my side, Olly for being a constant support, our friends who have messaged me, phoned, sent cards and gifts or popped in to visit; it all really does mean the world to me and it’s truly what has kept me going and got me through this really difficult time. I struggle to find the strength to get up and face each day, but I have to try to keep the faith that things will gradually get easier, and this pain is temporary and will pass. I just have to remain hopeful that we will find a setting that works and my bladder will regain some function.

Thank you all more than ever for everything, I’m eternally grateful. 🖤

It’s Time.

After years of discussions about Sacral Nerve Stimulation, which I’ve mentioned in previous posts, tomorrow is finally the day.

Due to being so high risk, I had to come into hospital today and stay tonight rather than arriving at 7am tomorrow morning. Being back admitted in hospital again is so very difficult to deal with, but I’m just hoping it won’t be a long stay, and this is the first step in trying to find a better solution for my bladder, potentially allowing me to wee rather than catheterising.

Today has been a blur and I expect tomorrow will be much the same. I haven’t been able to sleep very well in general for a long while, but the last two nights have been pretty much sleepless, and the sheer fatigue is also adding to my emotions.

It feels surreal the day is finally here. I got up this morning, said goodbye to Jeffrey before he went off to doggy day care, and the district nurse then came to take bloods and insert a needle into my port-a-cath so my IV access is ready; this avoids any further issues as hospitals can never cannulate me. I then had lots of last minute bits to do, and it seemed like I had the whole morning ahead of me, but time just flew by.

I had a very long bubble bath as I won’t be able to have one in between tomorrow and 1st March, my carer and I washed my hair and then I changed my stoma bag. All last minute bits had to be packed, and I literally feel like I have everything with me apart from the kitchen sink – I don’t pack lightly!

My Dad dropped my carer and I off at UCLH at Westmoreland Street where we went up to surgical reception and were told we had to wait in a waiting area as no beds were ready. The lady whose bed I was due to have was no longer being discharged. We waited hours and this I absolutely hate; I hate waiting around when I have so much on my mind, and there is also the uncertainty that a bed wouldn’t become available and my surgery would be postponed or I’d be sent home. My joints were killing me sitting in my chair, and eventually, when we continued to ask and keeping everything crossed, we finally got a bed.

I just didn’t know what to do with myself; my mind is everywhere, although I’ve brought lots of bits with me as a distraction I can’t concentrate on anything. I managed to get a bit of a nap, before my parents and Ollie visited this evening, but them leaving was so horrible. I just wish I could go with them and didn’t have to be here on the ward alone, with all I have to face tomorrow. I. just hope the operation will be worth it.

I’ll see you on the other side.