Lost.

Do you ever just take a step back from things and feel totally lost in the situation, with absolutely no idea where to go from here? That’s how I feel right now.

As I mentioned in my last post, I’ve found out I’m severely anaemic, deficient in folate, with an abnormal thyroid reading, and so some other blood tests have also been carried out which I’m waiting for the results for. It has been agreed that I can have an iron infusion to top my levels up, but unfortunately I have to wait for a referral to haematology for that. Yet here I am, stuck in the middle, barely with the energy to move myself off of the sofa some days. I can start the folic acid tablets, although I’m not sure how much of it I’ll actually be able to absorb.

This week I also had my long awaited ‘Gastric Emptying Study’ at The Royal London Hospital, which I was so hopeful would give us some answers, or prove a diagnosis of Gastroparesis which we would be able to start managing. I had to stop all anti-sickness tablets for the test, meaning that I was back to throwing absolutely every single thing I ate back up. I went for the test on Tuesday, and within barely anytime at all I started to vomit, and was sick so much the test had to be aborted. I’m having to have these tests due to the vomiting, yet they aren’t suitable if you vomit… it just doesn’t make sense?! I’m not seeing the consultant there until the 29th November so I’ve got a long wait now, and I have no idea where we will go from here, everything just takes so long. My body is getting used to the strongest anti-sickness medication and I’m taking increasingly greater doses for it to have any impact.

Here I am, with no energy, sleeping for way more of the day than I’m awake for, with deficiencies I’m unsure how to correct and relying on strong tablets with severe side effects in an attempt to keep any food down. This isn’t how I imagined my life, this isn’t how things should be. UCLH seem to have hit a wall with trying to help me, and so now all my hope for the gastro side of things is with The Royal London and my appointment on 29th November – it can’t come quickly enough. Fatigue is horrendously debilitating, and I’m just unable to live my life like this. I’m always willing to help myself, but I genuinely just do not know which way to turn at the moment, everything feels like a losing battle.

I’m sure I’m not the only one who has felt like this, but if there is anyone else in a similar position I just want to let you know you don’t have to face this alone; my inbox is always open. I genuinely can’t see a way forwards from here, I just don’t know how things will get better, but I know I’ve got to keep going. However, at the moment, I’m lost.

Setbacks.

I’ve learnt that my journey is never going to be straightforward, but this week just felt like it was full of setbacks.

I’ve always struggled with fatigue, but accepted it as part of my illnesses. However, over the past couple of weeks it has been extreme to the point that I’ve been falling asleep whilst sitting up texting, talking to people and just generally been way more exhausted than my normal; I could sleep all day and all night and still wake up tired. It’s really difficult when there’s so much in the ‘mix’ to pinpoint what the extreme tiredness is due to. It could just be my illnesses, it could be side effects of the many medications I take, it could have been that I’ve done too much, I’d just never know. I also get extremely cold as I struggle to regulate my temperature, but recently my lips and hands had been going blue at the slightest drop in temperature.

The sheer fatigue has been so extreme and so concerning that we decided to go to the GP to ask if she could run some blood tests just to check there was nothing else going on, and since getting the results I’m so glad we did. The tests showed that I have severe anaemia, a severe deficiency in folate and also flagged up an abnormal thyroid function. How much more can I deal with?

It’s thought that this could be due to gastroparesis and malabsorption issues. I’ve got to be on both iron tablets and folic acid tablets, and waiting to hear whether or not I can have an iron infusion to top my levels up quicker as I have done in the past. The deficiencies are also causing me all manner of other nasty symptoms alongside the overwhelming fatigue, and I’m really struggling to do anything at the moment. Due to the extremity of my deficiencies, my gastro consultant was very concerned and has kindly fitted me in as an urgent appointment on Monday. I feel so hopeful for this appointment as I’m desperate for help, but I know, as ever, there is no ‘quick fix’, and I usually come away disappointed. I don’t know what I expect them to do, I just want to feel better.

In the face of so many serious health issues, it’s sometimes easy to miss the little victories in life, which really need to be recognised and celebrated more than ever. However, this week, I went swimming for the first time since I’ve had my ileostomy.

Before having my stoma, I regularly went swimming and to Aquafit as it is one of the only forms of exercise I am able to do. However, since having my bag, I just couldn’t bring myself to go. Having Stewie (my stoma) and a bag stuck to my stomach has hugely changed my body image; I couldn’t face the thought of even putting a swimming costume on and the fear that someone may be able to notice my bag was overwhelming. Also, I haven’t been in the pool for six months, and for two months of that I was bed bound, so my fitness, which wasn’t great in the first place, has hugely reduced.

I’m proud beyond belief of myself for getting in a swimming costume, getting in the pool and taken the first step to get back to swimming. I’m nowhere near where I was before my operation, and I still struggle with body image, but I did it. I took the first step.

There will be people entirely confident despite having a bag, there will be people who can swim double, triple and quadruple the amount I am able to, but the only person I want to be better than is the person I was yesterday.

Dysautomnia Awareness Month.

October is ‘Dysautomnia Awareness Month’, and with it only being three days away, I decided to dedicate todays post to it.

The term ‘dysautonomia’ refers to any disorder of the autonomic nervous system (ANS) – this is the system that controls automatic functions of the body, that we do not consciously think about; this includes heart rate, blood pressure, digestion, stress response and temperature control. One form of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS) and this is one of the conditions with which I suffer.

POTS is categorised as an abnormal increase in heart rate that occurs after sitting or standing up, resulting in a variety of symptoms. It is also if symptoms are experienced in an upright position that are relived upon lying down. A POTS diagnosis is given if an increase in heart rate of 30 beats per minute (40bpm if under 19 years old) is recorded within ten minutes of standing. A drop in blood pressure can also be evident, although it is not always the case.

The severity of POTS hugely varies amongst patients, some (like myself) are very disabled by their symptoms, whereas with others symptoms can be easily managed with a combination of lifestyle changes and medication.

When a healthy person stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to the heart and brain. However, in POTS patients, the automatic adjustment to standing doesn’t function correctly, resulting in an excessive rise in heart rate, increased norepinephrine in the blood and an altered blood flow to the brain.

My most debilitating POTS symptom is fainting upon standing, and around 30% of POTS patients experience fainting (syncope). Other symptoms include dizziness, palpitations, headaches, tiredness, brain fog, shakiness, gut problems, poor sleep and bladder issues. Symptoms can vary from day to day, but some triggers which can worsen symptoms include excess heat, after eating, speed of positional change, dehydration, extended bed rest, alcohol and exercise. There are numerous tests which can be done to diagnose POTS, but the most common is the Head-Up Tilt Table Test. This involves lying on a table which can be tilted to an angle of 60-70 degrees, and continuous readings of heart rate and blood pressure are taken.

There are medications which can be used to try to reduce POTS symptoms, however there are also tips to manage symptoms from day to day. These include pacing yourself, avoiding stress, use of mobility aids, learning limits and setting achievable goals. Compression tights can also be worn to increase blood return from superficial veins in the legs.

There are numerous other conditions associated with POTS, and these include Ehlers-Danlos Syndrome, Chronic Fatigue Syndrome, Mast Cell Activation Disorder and Inappropriate Sinus Tachycardia.

There is currently no cure for dysautonomia, but medications and lifestyle changes can help to improve things. However, many dysautonomia patients experience disabling symptoms despite this, which significantly reduces their quality of life.

So much more awareness is needed of these conditions, and the month of October is a great opportunity for this – the average time to get a dysautonomia diagnosis is six years because of the lack of knowledge of the conditions. 25% of people with POTS are so disabled by it they are unable to attend school or work and researchers compare the disability seen in POTS to those with Congestive Heart Failure. If this post does anything, I hope it can help educate at least one extra person about these conditions, or encourage someone to research further into them.

Sacral Nerve Stimulation.

My last hope at ever going to be able to ‘wee normally’ is in the hands of a series of operations and the use of ‘sacral nerve stimulation’ (SNS).

SNS (also knows as sacral nerve neuromodulation) can be used to treat a variety of conditions, including overactive bladder syndrome, faecal incontinence, chronic pelvic pain and, as in my case, chronic urinary retention. SNS works by sending electrical signals to the nerves that control the bladder, and is often referred to as the bladder pacemaker.

I’ve been asking about this for two years, but was constantly declined it because of the severity of my EDS and the heightened risk of the wires migrating (moving and attaching onto another nerve causing symptoms such as leg pain). However, the surgeon I saw this week under UCLH at Westmoreland Street listened to me and my desire to not want another bag or tube hanging out of my stomach if it can be avoided, when there is something I can trial which may be able to restore some form of ‘function’ of my bladder.

My bladder has been in complete retention for just over two years now, meaning that was the last time that I passed urine normally, and since I’ve had periods of indwelling catheters, but for the majority of the time have self-catheterised; this means inserting a catheter into my bladder, waiting for it to drain and then removing the catheter again. I also have no sensation in my bladder (so now idea of when I need to wee), and so I have to catheterise by the clock.

SNS has the potential to increase my bladder function, and occurs in two stages, meaning that there are two operations for me to endure, and the risk of yet another two general anaesthetics which my body doesn’t react well to.

Stage one is known as the ‘test phase’;

The operation entails incisions being made in the lower back, and an electrode being placed near one of the sacral nerves. The other end of the wire comes out of the skin and is connected to a stimulator box outside of the body which sends electrical signals to the bladder. This phase usually lasts for 4-8 weeks and acts as a trial to see whether or not this operation is successful in treating the patients’ symptoms before the permanent device is implanted under the skin.

What happens during Stage two really depends on the outcome of stage one and how it went.

If there is a marked improvement in symptoms, so in my case having sensation back in my bladder to know it needs emptying and maybe even being able to pass urine naturally, even if it was just a small volume and needing to catheterise occasionally. This would mean that, 4-6 weeks after the first operation, I’d have a second surgery to implant the permanent battery.

If, however, the surgery isn’t a success and there is no improvement, the second surgery will consist of simply removing the electrode.

I’ve had a pre-op incase a cancellation slot comes up whilst I’m on the main waiting list, but with two major surgeries looming with associated risks, and this being the only hope of me ever having sensation/ being able to wee again, things are starting to feel all too real once more…

Recognition.

There are many things I do in life for various reasons; it may be because I enjoy it, because I think it’s the right thing to do or because I believe in it, and for me, that is enough to keep going, but getting recognition for something you’ve done just makes it worth it on a completely new level.

I’ve always been interested in equality for women, more recently particularly looking at the Science/Technology/Engineering and Mathematical industries as this is where my interests largely lie. When I was in sixth form, I completed an Extended Resesarch Project on this, travelling to Silicon Valley in San Francisco and seeing for myself the gender discrepancy amongst some of the biggest computing companies in the world. Looking back, I think I took my good health for granted with absolutely no idea that my rapid decline in health was just around the corner; I was able to have a normal school life, going on amazing school trips with countless opportunities, getting the GCSE and A-Level results I had hoped for and ultimately gaining my place at Cambridge University, my absolute dream.

After having the most amazing first year at Cambridge (despite a few bad patches with my health and hospital admissions), having to take two years of intermission and about to go into my third year off has made me despondent. I feel like such a failure and would do anything to go back to when everything was still as it should be towards the end of my school life, before my world was turned upside down by illness. I currently feel like I have no purpose; apart from Jeffrey, I have nothing to get out of bed for in the morning except monotonous days of medication taking, going to hospital appointments and often very little else.

However, my week was hugely brightened when I received a letter from Jeremy Hunt completely out of the blue which I have included below. It has been such a big pick me up after a really tough few months health-wise, with Cambridge seeming so far away. I’m absolutely over the moon and more determined than ever to be back there where I should be. “All our dreams can come true if we have the courage to pursue them.”

Catch 22.

A catch 22 situation is defined as ‘a dilemma or difficult circumstance from which there is no escape because of mutually conflicting or dependent conditions.’ I find myself in this sort of situation often due to chronic illness, the most recent example being encountered over the past few weeks involving my gastro symptoms.

On Monday my Mum and I went back to UCLH to get my MRI results; as we expected, they showed nothing remarkable that could be causing my vomiting. There does seem to be adhesions in my small bowel which were there before my ileostomy surgery, but we have no idea why… however, the bottom line was there is nothing physical causing my vomiting, making it more likely to be Gastroparesis.

Since starting Levomepromazine I have been able to keep my medications down which I was unable to do prior to that but food persisted to be an issue, resulting in me vomiting multiple times a day as well as other symptoms such as stomach pain and bloating. I decided to increase this antiemetic medication to see if I could keep food down as I’ve literally been at the end of my tether with these symptoms manipulating my life. Finally, after increasing it by a few increments, I had some luck with being able to keep some food down on ‘good days’. However… this comes at a cost.

Firstly, Levomepromazine is, in effect, the last antiemetic I have to try. All the other medications that are first and second line have stopped working, and so when Levo was started, it was with a view of only being short term until things settled down… yet five months later we are still here.

Secondly, the side effects have hit me hard, the main one being fatigue. I suffer with this anyway, but since being on this tablet I’ve been exhausted, napping everyday and with very little energy.

Also, Levomepromazine has started to impact my liver. I’ve had abnormal blood test results and my body is struggling to cope with me taking it.

Ultimately, at my appointment, the consultant told me that I need to get off of the medication and find a way of coping with my symptoms without being reliant on it. I’m really shattered as I finally found something that gave me some relief, and now I’ve got to stop it, with no guidance how to do so or what to do to replace it so I feel so alone in this. I’ve tried cutting it down by a tiny amount but no less than my current dose gives me any relief. I’m being referred to the nurse specialist who does hypnotism and acupuncture whom I’ve seen before with no avail, but as with everything there is a wait for that.

So, I’ve got to cut down the medication, but it’s the only thing that gives me some relief… here I am in another catch 22.

Pacing.

One thing that I’ve found really hard to do since I’ve been unwell is pacing.

The idea of pacing is to spread activities out over the day and not to ‘over-do’ things, in order to maintain a constant level of activity throughout the day and avoid exacerbating your symptoms. This could be to avoid excessive fatigue, sickness, pain, flare-ups and ultimately crashing out.

Despite being a fairly disciplined person in everyday life, pacing is something that I’ve never managed to quite master. I think part of this is because on a good day, I want to make the most of it and get everything done I can, and on a bad day I feel like I need to do at least something as I really struggle to rest with everything I need to do going around my head.

I have set myself a target to be able to pace better and have been researching some tips to be able to do so which I thought some of you may find helpful…

Tips to pace effectively;

  • Decide what you can comfortably do on a particular day, then only do 50% of it. This is a good way of not overestimating what you can do, and ensuring you don’t do more than you are comfortably able to.
  • Write the tasks down you have to do in a day broken into little steps, and split them into things that are easy, average, and difficult to do in terms of what requires the most energy/ movement etc. Break the difficult tasks up with those that are easier to complete.

  • Schedule in breaks between each task you have to do.
  • Ask for help if there is a task that someone else is able to help you out with.
  • If there is a task that unexpectedly crops up that is essential to be completed, try to pace it the best you can.
  • Keep an activity and symptom diary to be able to detect any patterns which can then be more easily rectified.
  • Slowly build up what you can do at a reasonable rate.

I already make ‘to-do’ lists, so my first step is going to be to break these up into smaller steps and categorising them by the difficulty of each task. It’s not going to be easy and I’ll have to build this up very slowly, but I’m going to give it a go to better preserve my energy and complete tasks more effectively. If anyone else has any other tips or ways that help them then please leave a comment!

Holibobs.

This week my family and I went away, just to Rye in Sussex, where we rented a bungalow from Monday-Friday. We haven’t had a proper holiday in years, and this was a much welcomed change of scenery, all on one level so there were no stairs for me to struggle with, and it was dog friendly meaning Jeffrey could come. However, travelling with a chronic illness, even just a short distance away from home, can be a stressful and overwhelming experience, but after all I’ve been through this year I was determined to make the most of it.

Packing can be stressful for anyone, but on top of the usual necessities I have to consider medications, catheters, stoma supplies etc all of which are essential. I find the task of deciding how many of those to take etc very stressful as I don’t want to take ridiculously too many as they’re all bulky, but at the same time the thought of taking too few and being stuck trying to get emergency supplies is a huge worry of mine. It’s things like this, the extra consideration that has to go into what I need to take and to packing, that makes me struggle to cope with having chronic illnesses, as it just adds stress to so many aspects of my life. This was also Jeffrey’s first holiday, so as well as packing for myself, I also had to pack for my fur baby (although that task was much more enjoyable, choosing what toys he wanted to take etc!).

If I’ve learnt anything from this holiday, it has reaffirmed my belief that family is everything. Life is so fast paced and time is so valuable, yet we very rarely get to spend quality time together as a family. This week gave us the chance to do just that for a couple of days before Laura had to head back home to work, and it was just what I needed.

Obviously unfortunately being away for a couple of days doesn’t give me a break from my health problems (as much as I wish it did), but it’s a very much welcomed change of scenery, time without hospital appointments, time off of having to act as my own medical secretary and a break from the monotony of my current daily life. However, despite the absolute delight of being able to have a few days away, one thing I really struggle with is going back home again.

It sounds silly because most people don’t want a holiday to end, but I find the thought of going back to normality, considering how tough I’m finding things at the moment, so difficult. This week I’ve had time to do things other than things centred around my health problems, whereas at home my life is currently so medicalised I struggle to balance having a life alongside that.

Despite that, I do have a positive piece of news to end this weeks blog post on which has made having to come home today slightly more bearable. Yesterday, I received an email from Cambridge University informing me that my third year of intermission has been approved; this was such a relief after months of waiting! This means that subject to being ‘medically fit’, and completing exams nearer the time, I can return for my second year at Cambridge starting back in September 2019, giving me just over a year to stabilise my health and be confident with first year work. The year ahead won’t be easy, with operations, medical procedures and appointments still to come, as well as a hugely vast amount of work to go through which I’ve been too poorly to do so until now, but the goal at the end, of being back at Cambridge, makes it all so worth it.

Gratitude.

Seeing people get their A-Level results yesterday absolutely broke me. I couldn’t face to watch the news about it or read people’s posts about them. I don’t begrudge anyone for being rewarded for their hard work and taking the next step in life to university, but seeing students three years younger than me, and watching others for the third year in a row be able to go to university when I can’t because of my health absolutely breaks my heart.

Flicking through various social networking sites, my feed has been full of my friends posting about being stressed doing their dissertations, and now it’s mostly full of graduations; every post I see makes me long even more to be in that position and absolutely shatters me. I’d give anything to be having a normal life, just finished my third year at Cambridge, either just graduated or preparing for a fourth year. It seems an odd thing to want, the stress of a degree, but for me that would mean normality. All through my life I have been very academically driven, and I was fortunate enough to achieve my ultimate goal of gaining a place at Cambridge University.

Yet here I am, my body failing me, needing round the clock care, going through gruelling hospital tests, recovering from surgery, waiting for other operations and having my life dictated by illness. This had me thinking; does everyone want something that they don’t or can’t have, regardless of what that might be? There might me people out there wishing for something I have (although at the moment I find that hard to believe).

This has truly made me think about what I do have, and how grateful I should be for it. I have the most supportive family who go through everything with me, always putting me first, dropping everything to help me out when the need arises and caring for me more than I thought possible. I have amazing, supportive friends, particularly in Thea, who are constantly there for me and at the other end of the phone anytime of the day or night, quite often putting up with me crying down the phone, offering their advice and cheering me up. I also have Jeffrey, my Maltipoo, who brightens up even the darkest of moments with his cheekiness and loving nature.

I also need to be grateful that I did get the chance to experience studying at Cambridge. It may have incorporated hospital admissions and deteriorating health, but I was lucky enough to be there for a year, making friends, doing a degree that I loved and participating in various aspects of university life. However, this makes me sorely miss that experience and long more than anything to be back there; it was a period of my life that I thoroughly enjoyed, I had such a strong sense of belonging. I loved what I was learning and the lab work, and the entire experience was one that I wouldn’t change for the world. I so hope I’ll get back in October 2019, although it’s on my mind that I’ll need carers, adaptations to meet my needs and be three years behind all of my friends graduating.

Being ill has also made me appreciate the little things in life. I’ve had periods of being admitted to hospital, being bed bound and being house bound etc, and when I finally manage to get outside there is nothing more amazing than fresh air, something that I would have taken for granted previously. After recently recovering from surgery and being able to do very little, as things have got easier I’m also grateful for things such as being able to play with Jeffrey and do his training again, seeing friends as I was lucky enough to spend time with Deborah and Thea this week and just being able to leave the house which has been amazing.

Everyone has things in life that they long to have, to do or to be, but it’s so important to take a step back and appreciate all you have. “Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have you’ll never, ever have enough.”

Post Tonsillectomy.

To say the last nine days have been horrendous would be an understatement. Nothing could have prepared me for how tough the post-op period of my tonsillectomy would be, and today, finally nine days post-op, things are gradually getting easier day by day. I think that having your tonsils out is seen as a ‘minor’ op, of course one that is easier to recover from if it’s done as a child, and it’s definitely a recovery that I underestimated.

On Wednesday 1st August, I had to be at Medway Hospital for 7am, and due to the risk because of my other health conditions I was first on the list so taken down for surgery at about 0845am. The operation itself didn’t take very long, and I was in recovery by around 1030am as far as I can remember. They had to put one crash call out for an episode of respiratory failure that I went into as a result of the anaesthetic, but I was grateful it was only one in comparison to previous operations.

I knew that I would have to stay in overnight, and so was waiting in recovery for a bed on a ward which they were struggling to find. There were talks of staying in recovery overnight with it staffed, but fortunately, finally at about 1900, a bed was available on an ENT ward which I was moved to. My throat felt very sore and I was generally exhausted from the anaesthetic etc, so I was grateful to have a bed, be able to see my parents, Laura and Steve who had also visited, and finally get some rest although sleeping was very difficult with excruciating pain every time I swallowed.

I’d been very sick in recovery, and so the ‘criteria’ for being allowed home the following day was to be able to keep fluids down which I fortunately could, and so during late afternoon on Thursday 2nd August I was allowed home. I slept for the entire day on and off on Friday, and on Saturday, which was probably the most difficult day during my recovery, I couldn’t even get out of bed. Swallowing was agony, every sip of water I took felt like I was swallowing over razor blades, my ears were killing me and I’ve been suffering extreme abdo pain and issues with my ileostomy.

I don’t know whether the latter has been due to the ‘gunk’ going down my throat during the surgery, to not eating anything so my stoma hasn’t really been working or what, but the whole experience has been horrendous and for the majority of the time I’ve struggled to get any oral medications down until the last few days, and so even pain-relief hasn’t been easy to take. The pain has meant I’ve not been able to sleep at night so the days have seemed harder to face, and for a whole week I couldn’t even summon the energy to get out of my pyjamas. The heat hasn’t helped me get any rest, and I’m so grateful it’s finally cooled down a bit the last few days.

I’ve found it so difficult as the decision to have this surgery wasn’t an easy one to make; I don’t heal very well, there are so many treatments that I’m trying to prioritise, time is of the essence for hopefully getting back to Cambridge for October 2019 and I constantly put my tonsils to the bottom of the list. This was until they were impacting my airway increasingly more and incidences of tonsillitis were becoming more frequent, more severe and becoming harder to fight off. The surgeon commented on the scarring on them when he removed them as a result of the repeated infections.

I am pleased that the operation is over now, and hopefully everything will heal successfully and the rest of the recovery will continue to get easier, but it really hasn’t been an easy surgery to get through.

Even more than ever, I’ve been so grateful for the love and support of my family and friends to get me through the last nine days which truly have been horrendous. Another surgery over, and it’s got to be onwards and upwards from here…