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…

A positive appointment.

As you all know, since my stoma surgery I’ve been suffering the symptoms of severe Gastroparesis, and I haven’t felt the medical staff or myself have been able to get a hold on the symptoms nor implement an effective plan going forwards. It was daunting enough being discharged home from hospital with Stewie to get used to living with, but how much I wish the ileostomy was my only concern as the constant being sick is proving to be extraordinarily difficult to cope with.

Dealing with multiple chronic illnesses like I do, I have so many medical appointments some feel like a waste of time, some lead to no progress, some I come home devastated from, and so I can’t explain the elation following having a productive medical appointment. I have seen Professor Aziz since he made my Ehlers-Danlos Syndrome diagnosis years ago now, and last week when I went back to The Royal London for a follow-up, which was brought forwards due to the severity of my symptoms, I saw a different neurogastroenterology consultant under the same team, and it was the most productive, positive appointment I have had in a long while.

The consultant was pretty certain my symptoms are Gastroparesis, and explained to my Mum and I that this can commonly occur after surgery in Ehlers-Danlos Syndrome patients. The major surgery I had would have been such a shock to my body and it’s response is this Gastroparesis flare. I use the word ‘flare’ as we hope that it’ll calm down, but obviously we don’t know how long it’ll take or what interventions will be required. I had related issues with nausea and vomiting before my operation so the problem was already there, but no where near to this degree.

The first thing that was suggested as a result of the appointment was a Gastric Emptying Study.

This is a procedure carried out in Nuclear Medicine using radioactive chemicals which measures the speed at which food is emptied from the stomach and enters the small intestine. The chemicals are put in a known amount of food, routinely either egg or porridge, which has to be ingested before a series of images are taken using gamma cameras over a period of time. I did have one of these tests around two years ago now when I was having issues with vomiting, but the radioactive substance was given in mash potato and I just couldn’t get it all down so the test had to be abandoned. The consultant was a little worried that we may encounter similar problems this time as the entirety of the food has to be eaten and I’m unsure I’ll get it all down before I start being sick, but we’ve decided it’ll be worth having a go. This test is really being done as a formality, and we suspect it will confirm the diagnosis of Gastroparesis which the consultant is pretty sure of.

If I am unable to complete this test due to not being able to eat the whole of the substance, they will instead carry out an ‘Esophageal Manometry Test’. This test won’t be as useful as it doesn’t give as detailed results as a gastric emptying study, and it only looks at the oesophagus which means it may not detect the problem, so I’m hoping we can get results from the gastric emptying study.

The other thing that was mentioned was a period of Nasojejunal feeding. This wasn’t completely a shock to me and I’ve written a blog post on it as it had been in the back of my mind, but it is something I was really hoping I’d be able to avoid. A nasal tube is really hard to cope with, firstly the fact that it is taped to your face so the first thing anyone sees, and also that it isn’t the most comfortable thing, and previously caused me increased nose bleeds etc. However, it would be a way of getting substantial nutrition into me which I am lacking at the moment, a way of hopefully enabling me to absorb my medication more effectively, of stabilising my blood sugars and of giving my stomach a rest which the consultant believes it needs.

The Gastroparesis and resultant chronic vomiting continues to be the biggest issue I’m facing at the moment, although unfortunately it is one of many. It is now impacting other health problems of mine due to not keeping my tablets down etc so really needs to be addressed, but I feel the appointment I had at the Royal London was one during which I was really listened to and understood, and finally progress has been made towards putting a plan in place. I’m struggling at the moment with this on top of recovery from my tonsillectomy, but I can continue to hope and pray that one day I’ll get on top of this, and until then, I’ll keep fighting.

Here We Go Again…

I wish the title of this blog post was referring to the Mamma Mia sequel that was released last week, but sadly it’s not. Unfortunately, here I go again with another operation and hospital admission this coming week.

On Wednesday 1st August, in just five days time, I’m going into Medway hospital for my tonsillectomy… it feels like a long time coming but also feels way to soon to be going into hospital again! Having this operation done has been discussed for years now, but I’ve been putting it off to prioritise other medical treatment. However, after having tonsillitis (and glandular fever) multiple times in the last year which I’ve struggled to fight off, which has restricted my airway and I’ve required hospital treatment for, this operation has become a necessity.

Routinely, this operation is done as a day-case, but due to my pre-existing health conditions and previous adverse reactions to anaesthetics, it’s being carried out as an inpatient. I’m hoping it’ll only be for a night or two, but of course the length of the stay depends on numerous factors and it’s all a bit daunting particularly after what I’ve already been through this year.

I’m finding it really hard to come to terms with going through surgery again and getting my head around another admission no matter how minor this op may seem to someone on the outside. I’m normally organised way ahead of admissions in case of anything unforeseen popping up beforehand, but I can’t bring myself to get ready at the moment. I wish I could be like a healthy person packing without all the additional medical supplies to worry about, but if I was healthy I wouldn’t have to be packing for hospital admissions at all.

I’ve got to get my port-a-cath accessed, sort medications, pack stoma supplies and get catheters out to name a few things, on top of organising the essentials anyone would need for staying away. I also have the difficulty of leaving my family again whilst in hospital, also leaving behind home comforts and my gorgeous Jeffrey who I spend pretty much every day with.

I’m sure it’ll be okay and I’ll get through it, as I do with everything, with the support of my amazing family and friends but things really just feel relentless at the moment. I can’t thank everyone enough for being there… it means more to me, particularly at the moment, than I could ever express.

Watch this space for next weeks blog post with a gastro update… finally some progress after my neurogastro appointment at the Royal London yesterday.

Ella

Care co-ordination.

If being chronically ill isn’t already a challenging enough full time job, basically having to be your own medical secretary on top of that is a huge responsibility and one I would really rather not have.

I think it is so difficult if you have more than one illness or have a multi-systemic condition, such as EDS, as there seems to be no communication. At one point I was seeing countless specialists across numerous hospitals and NHS trusts, and none of the doctors knew of any of my other issues and the treatments I was receiving from the other health professionals. This meant that my consultations consisted of me having to explain everything that was going on before the relevant problem could be discussed. I thought that the answer to this problem would be to have all of (or as much as possible of) my care at one hospital.

About two years ago now I saw my urologist at UCLH who I explained the fragmented nature of my care to and how it was actually impacting the quality of care I was receiving, and she advised I have it all transferred to UCLH. I can’t explain to you how ontop of the world I felt after that appointment; she was to make multiple referrals to get all my care at the hospital, one of which would be to a pain management specialist who had experience of managing complex cases and would also coordinate my care. I thought from this point on I’d have no issues with co-ordination and the responsibility of organising things, sending results, constantly phoning up secretaries, emailing etc would be taken out of my hands… how I wish that’d have become a reality.

Time passed from that appointment and I was still waiting to get the referrals through, stuck between not wanting to chase things up too soon as we all know how long these things can take, and the fear of being forgotten or the referrals being lost. Months from that initial appointment, after talking to various different secretaries and being passed from pillar to post, I was told that the referral to the pain management consultant was made in the incorrect form and by the time anything could be done about it the particular consultant would be on long term leave and there wasn’t an equivalent of her with her experience in managing such cases. I was devastated. It’s hard for healthy people to comprehend the responsibility trying to tie your health care together bears, particularly when you rely on it so often for so much, and I was broken knowing that the consultant who was to be central in my care was no longer in the picture.

In time, appointments came through for the other referrals and I started seeing the consultants at UCLH. It was very difficult to begin with as I was starting all over again with doctors despite my health problems starting a while before. One of the new consultants I saw was my gastro who, now takes a very central role in my care as a lot of my most significant problems are in her specialism, and whom helped organise my ileostomy in addition to helping manage my nutrition problems.

I was also referred to the autonomic unit for my POTS, but was advised to keep my care where it was at King’s College Hospital, as I’d had an extensive admission there which involved a flare of my POTS and my history was so complex it was advised someone new didn’t take it on, although I do have input from the NHNN for that too. I also have district nurses, local stoma nurses and EDS specialists who don’t work out of UCLH whom I still see yet are removed from that particular hospital, but at the moment this is something that can’t be changed.

Despite the majority of my care being at the same hospital (albeit a very large one), I still feel there is a huge lack of communication, little coordination and still a need for me to tie up loose ends. I find it very hard, particularly if I’m having a bad pain day or struggling with fatigue, to have to then be chasing things up, sending results from one consultant to another and trying to organise appointments… it’s a full time job.

I so wish there was some sort of advocate who could do all of those tasks for me because they’d truly be worth their weight in gold to me. It’d mean that, despite still needing to go to appointments and have medical treatment, I could have more of a life alongside that and a huge responsibility would be lifted from my shoulders.

Nasojejunal Tube.

As I’ve extensively blogged about, my vomiting ceases to improve and ultimately has worsened over the past few weeks.

It’s extremely draining and is hugely impacting my mental health; I can’t eat if I have any plans to leave the house as I don’t want to be sick when I’m out and about, I’m too embarrassed to eat in front of people because of it, I’m having to take tablets on an empty stomach and they too aren’t always staying down… it’s just a nightmare to say the least. My gastro consultant made an appointment to see me on Monday evening, and I was so grateful for the time she gave my Mum and I to try to talk things through and discuss how we would move forwards from here.

I’m still waiting for a small bowel MRI which was ordered urgently a little while ago now; the one I had prior to my surgery was abnormal which was thought to either be due to damage from my Crohn’s (which has never been in my small bowel) or the impact of surgery (which I hadn’t had at that point), and so there appears to be something going on that needs to be investigated. The consultant also said the vomiting could be due to EDS complications or it could be due to adhesions so hopefully having another MRI will help to determine what is going on so it can be better treated.

As I’ve previously mentioned, it could also be Gastroparesis which commonly occurs secondarily to EDS, although we aren’t sure why this would have suddenly presented like this post-ileostomy; I’ve always had problems with nausea and occasional vomiting but nothing like I’m experiencing now. Gastroparesis literally means ‘stomach paralysis’, and results in reduced or absent motility of the stomach meaning that it can’t empty in the normal way. There is no cure for this, but certain practices can be implemented such as eating little and often, and there are also medications which can help with the emptying of the stomach and control of nausea, although the effectiveness of these aren’t particularly great.

It has been thirteen and a half weeks since my surgery now, and as things still haven’t improved it has been decided that I’m going to have another feeding tube for the time being, but a slightly different one to before. A Peg-J was considered, but that would be another surgery and so not ideal knowing how poorly my body reacts to that. Therefore, a Nasojejunal tube was decided on; my main concern with this is that it is normally inserted under a general anaesthetic, but due to my adverse reactions to those I will have to endure the insertion under just sedation. My gastro consultant is now going to conduct an MDT (multidisciplinary team) meeting with the dietician and clinical nurse specialist to organise me having the tube, and it may be that I’ll have to be admitted (hopefully not as long a stay as last time!) for the procedure and to learn to manage it myself for when I’m home.

A Nasojejunal Tube (or NJ tube) is a flexible tube which is passed up the nose, down through the stomach and then into the jejunum which is the second part of the small intestine; food and medications etc can be put through the tube and then are rapidly absorbed into the body in the small intestine. Once I have my tube, I will receive the majority of my nutrition via it whilst I still attempt some oral intake in the hope that it will improve and I’ll eventually get back to eating normally, but we don’t really know ‘what’ we are treating or how long this is going to take.

It’s not until this has happened that I’ve realised just what a big part of life food and eating is; obviously I know we need nutrition to survive, but eating is a huge social activity and not being able to go out for lunches etc, and having to avoid eating when I’m leaving the house is starting to really dictate my life. It’s true to say that sometimes ‘we don’t know what we’ve got until it’s gone’, but eating is such a simple pleasure and something I’d give anything to have the ability to do.

Wimbledon.

It has been a hard week for me as my year group at Cambridge had their graduation, and seeing the pictures absolutely broke me; I’d give anything to have been there graduating with them, so I was extremely grateful for the distraction of going to Wimbledon on Tuesday with my Mum.

It’s the first year that we’ve been fortunate enough to get disabled tickets in the ballot and I have been so excited to go! The last time I went was years ago when I wasn’t in my wheelchair so we had general tickets, and so this is the first time I’d encountered Wimbledon from a wheelchair-users perspective and got to review their accessibility. The whole experience has such a wonderfully civilised, British air about it and is usually such an enjoyable day so I was so excited to visit again.

Navigating public transport with the wheelchair is never easy, and so to save the stress of that my Dad dropped my Mum and I off (perks of having a cabbie Dad)! The entirety of the surrounding streets are a no-stopping zone, but there was one area that disabled visitors could be dropped off at. We got to the correct road, but then had to ask policemen where the drop off point itself was as it wasn’t clearly signposted. Despite it not being obvious, there were plenty of police and members of staff lining the streets who were able to point us in the right direction. My Mum and I went in through the gate where we had our tickets scanned and bags searched before we were allowed through into the grounds.

Navigating the grounds themselves wasn’t too bad; it’s all fairly flat with only a few slight inclines which meant it wasn’t too much of an effort for my Mum to push the wheelchair. There were crowds of people but that was to be expected. The main shop was fully accessible to my Mum and I (and air conditioned which we hugely welcomed!), and in addition to that there were lots of little ‘huts’ selling souvenirs, treats and programmes etc – all of these had steps to get up into them and so I wasn’t able to get into these. The food and drink stands were also up a few steps on decking with very windy queues and so we would have no hope of getting the wheelchair up to those. Obviously with the way my eating currently is we didn’t need to access the eateries and so this wasn’t a huge problem to us, but there were plenty of stewards around who I’m sure would have assisted if we had needed it.

Our seats were on Centre Court Level 5, although when we received them we were given the chance to change these to court-side spaces. We decided not to do this which was definitely the correct decision as the spaces beside the court were in the direct sunlight with no shade (and it was an extremely hot day), and the view from there wasn’t so good with it being restricted to one area of the court. We went up in a lift to level 5, and found the section we were in which was only a short walk from the lift. We were about halfway down the court so we could see the entirety of it perfectly, and were under the cover so wasn’t suffering from the direct sunlight and the temperature was cooler than it was outside.

There was a space for my wheelchair to be parked, and a seat next to it for my Mum; there was about eight pairs of seats/spaces like this in our section. Unfortunately the way it was designed meant there was a post between my Mum and I so we were either-side if it which wasn’t ideal, but it didn’t cause any major problems. It was really well thought out in the sense of having refreshments and toilets etc up on our level just outside our section so we didn’t have to go all the way downstairs if we needed the loo or wanted to get a drink etc. The disabled toilets were all accessed by radar keys which stopped them being misused, and most staff members had a radar key on them if I hadn’t have had my own one to use.

We had three matches on Centre Court, one of which was seeing Nadal win. The biggest downsides of the day were not being able to take a picnic due to my vomiting, and having a major bag leak which was really upsetting; however, the huge positive of having a lovely day out with my Mum greatly outweighed any negatives. If you are a tennis fan or want to visit Wimbledon for the experience I’d hugely recommend it, and after my experience on Tuesday being a wheelchair user definitely isn’t a reason to stop you!

Adhesions?

Unfortunately, as many of you know, my vomiting has proven to be a persistent problem; I’m now eleven and a half weeks post-op, yet every single thing I eat still makes me sick and I’m on a dangerously potent anti-emetic just to be able to keep my other medications down.

Before my operation I had gastro symptoms and was on various antiemetics. but nothing as severe as I am experiencing now; this means that it hasn’t been until recently that I’ve realised what a void in your life not being able to eat causes. I’m twenty one years old, yet when we went out for a family meal on Saturday and I couldn’t eat as I knew I’d be sick, I just sat there in tears. I stuck out like a sore thumb, I was miserable and I’d have given anything to have a meal which I’d have previously taken for granted.

Initially the vomiting has been put down to my EDS and associated gastroparesis/ intestinal dysmotility. This meant that very little could be done to help, but I had the period of NG feeding in hospital to ensure I got the nutrition I needed and to maintain my weight after weight loss due to the vomiting. I was told that there was no physical obstruction etc causing the sickness, and all I could do was to take advice such as eating little and often, high sugar foods being easier to absorb, eating slowly and trialing medications such as Metoclopramide which help the stomach to empty faster to try to prevent being sick.

However, I saw my gastro consultant again on Monday, and with my symptoms persisting, she is now organising an urgent MRI to check for adhesions, and also to check for gallstones which may have been caused by a sudden change in my eating pattern. I also had extensive blood and urine tests and I’m seeing my consultant again in four weeks to see where we go from here.

I can’t explain how challenging this period of time has proven to be; I can’t eat if I’m going out, I’m embarrassed with constantly being sick in front of others and ultimately I’d give anything and everything to have a meal that I can keep down.

Tonsillectomy.

I have always known that I have to face multiple operations in the near future, but after my recent eight week admission I hadn’t quite got my head around already going through surgery again and enduring the recovery process afterwards.

This week, I had the pre-op for my tonsillectomy at Medway Maritime Hospital with my operation planned to take place in July. This is usually done as a day case, but because of the risk of the anaesthetic, my medical history and my medical problems, it’ll be done as an inpatient. I did have an exact date for the operation, but this was booked in error as a day case and so I’m waiting for another date.

A tonsillectomy has been considered a few times now, but the last time we decided against it because of the risk carried by the operation when I was waiting for so many others that I had prioritised. However, in the last eighteen months I’ve had tonsillitis more than ever before, as well as glandular fever twice, and many of these episodes left me hospitalised due to it causing my airway to collapse, and so this operation is having to be done, particularly as getting another bout of tonsillitis could delay other operations.

A tonsillectomy is a surgical procedure during which both tonsils are removed; the tonsils are masses of lymphoid tissue located in the mouth. For me, after my past two experiences with a general anaesthetic, that poses a huge risk but so does the operation itself. The procedure can cause bleeding, infection and dental damage just to name a few, and particularly considering my EDS there can be impaired healing. Every operation, no matter how big or small, is a huge worry for me but it’s a risk I have to take for the best possible quality of life in the future.

Silver Linings.

I blog regularly about my struggles but feel like I very rarely mention the positives that arise from my difficult situation. I get so caught up in hospital admissions, surgeries, constantly taking medications and not being able to do things that would usually be taken for granted that I don’t often get the chance to appreciate the silver linings to my very medicalised life. It’s all so easy to think about the university life I’m missing out on and the fact I should be graduating this month, the fact that I spend extended periods of time in hospital so miss out on ‘normal life’ and the fact I have to use a wheelchair, but the truth is my illness has brought some positives into my life which I wouldn’t otherwise have which I really should focus on, but it can be difficult to do that.

1. Friendships

Without suffering with my ill-health, there are many friendships that I wouldn’t otherwise have. I met my best friend through us both having the same condition, and whilst I wish I could take Thea’s suffering away from her, us both being in similar situations mean we understand each other like no one else and have such an amazing bond because of that.

Thea’s strength truly is admirable, and if I could be half as strong as her I would be happy. Despite what Thea goes through, she is always there for me and I wouldn’t cope without her, particularly throughout my most recent hospital admission.

I’ve also met some other amazing people due to hospital admissions etc because of being unwell. One such friend is Doris whom I recently blogged about, as well as my friend Emma from a POTS support group, and meeting people such as them in similar situations to myself gives me strength seeing how they cope with all life has thrown at them.

2. Strength

Whilst I wish I could be stronger than I am, particularly when I compare myself to other people, my illnesses have meant I’ve found greater strength than I would otherwise have. Unfortunately, being poorly means that a lot of things end up being out of my control; periods of time spent in hospital, side effects of medications, having to use a wheelchair etc, but there is no choice but to cope with these difficult times and I have come out the other side stronger for it.

3. Appreciation

Having my independence taken away from me and my health problems dictating what I can and can’t do makes me appreciate everything so much more. Just recently I spent eight weeks in hospital, most of which I was bed-bound for, and so since I was discharged I have an increased appreciation for things that I otherwise may have not even thought about. Fresh air, getting to the woods with Jeffrey and having a bath are just a few of the things that, since my discharge, I have been so very grateful for whereas, for healthy people, they are just things experienced in every day life without a second thought.

I also have a greater appreciation for the people around me. I’ve always been extremely grateful for my family, but since I’ve been poorly they’ve gone above and beyond their roles to support me and make me feel like I’m not facing my health issues alone. I’m also appreciative for my friends who keep me going, and for the NHS staff who constantly support me, and who’s treatment and efforts mean I can live the best life possible given the circumstances.

It’s very true that being constantly positive whilst living with chronic illness is so unrealistic, but keeping a positive outlook wherever possible is vital to being able to cope long term. Chronic illness truly has opened my eyes to the blessings in my life which, in itself, I am so very appreciative for.