I've been through a lot this year, 2017 has definitely been a tough one, but I've decided that suffering in silence helps no one and actually speaking about my experiences could help bring more understanding to invisible illnesses. I believe most people around me are aware that I have been unwell, but the extent of which and how it affects me on a daily basis is definitely something that I don't like to share. I only do this now after I make a big step towards putting myself first by taking a Career Break from work and starting a new course of stronger medication.
Before I properly start, I want to make abundantly clear that through revealing this, I do not seek sympathy. All I ask is for more understanding towards people whose illness or disability you don't see. They are suffering more than you know and just because on the surface they look ok, doesn't mean they are. They are fighting and putting a mask on everyday in order to try to have some aspect of a normal life, treat them with respect and don't question their problems, you then contribute to making it worse.
So, this is me a few days ago, a fine picture of health right? I started my newest bout of drugs to get some level of normalcy with my Chronic illness. But maybe I am jumping ahead a little bit, more understanding means more information, so here goes...
I have been a sickly person ever since I can remember. I was always the fussy kid, the one that was sick from school or the one that I'm sure most parents hated to host! However, that's not all that I was, I was lucky, as I had great friends, great parents and an amazing childhood filled with adventure, holidays and great memories. I have only fond memories of going to Devon with my brother every summer holiday to stay with my Nan, baking cakes with my Dad and playing shop with my Mum. This was never shrouded by waking up feeling nauseous every single morning, this was just expected and I kept going like any kid would.
To be honest, it was only when I went to Senior School where my health began to deteriorate at a pace which was a lot more recognisable. I was feeling sick a lot more often and due to this I started missing more and more days at school, to begin with I believe it was the big change from little school to big school. I was separated from my best friend of 6 years and thrown into a totally different way of schooling, this combined with genuine feelings of sickness every morning it wasn't a good recipe for a great start to high school.
My parents did what they could, they took me to the doctors and kept doing so until someone listened, the Doctors blamed it on many different things over the years and I was given such a variety of different pills it's hard to count! They focused on the nausea feeling for years and all they did was aim to treat that, for a few years I settled on one medication that seemed to work. I was still ill but not as much, so less time off school and more time to focus on being a normal teenager!
Then I hit the final year of school, this was one of the worst times for me, even now I honestly have no idea how I got through it. The pressure and nerves of the final exams of school were only built up more by the teachers and school, I don't know how they expect people to thrive in that sort of environment. I know it made me feel 100 times worse, the sickness came back with a vengeance and I was back at the doctors on a regular basis. My parents pushing them more and more to do tests and not just claim it was nothing, it was so obvious to my family that I wasn't making this up but doctors just didn't seem to care. Finally, at the end of the school year between me leaving and starting college, I was given tests to decipher what might be going on.
I'm second from the left, throughout this summer I was going to doctors appointments, hospital tests etc but you wouldn't know from this picture. I've never let any of it faze me, I just kept persevering and enjoying time with my friends before we would all go our separate ways.
The tests eventually concluded that I had a reflux problem and that I was most likely intolerant to dairy. At this point I had already suspected this, I had already started to cut cheese out as I felt most ill after eating this. During this time, I lost a lot of weight and kept it off, struggling to even it out from then until now. After being quite a chubby kid, this was quite a change, but being a teenage girl this wasn't such a bad thing in my head and I didn't worry, while my parents did.
I started college and continued through the ill feeling concluding that it may just be from the stress of a new situation, giving the dairy free (ish) lifestyle a go before I would eventually give up on it. But for now, I was doing ok, I was feeling ill and stress was definitely becoming more and more of a trigger but the doctors weren't doing anything so there wasn't much more I could do.
I made it through college, this was a tough time and I started to withdraw a little from friends as people were at the age of wanting to go out clubbing and drinking. This is something I just never wanted to do, it's strange, I just decided that I didn't want to drink when I was younger and it has been something that I have stuck to for all these years. The sickness feeling was just getting worse, I was struggling every day at college but I only missed a bit and I got some good exam results there too.
At this time, I realised that when I was eating meat, I was feeling worse and getting sick so I concluded that I should just cut it out. This is when I went Vegetarian, it feels like a lifetime ago now, I remember joking whenever anyone asked that I didn't care about the animals, I just cared that I wouldn't get sick. Now I can't even imagine eating a piece of meat, the look of raw meat repels me and I don't miss it at all, of course I could be associating it with getting sick but it's been too long to turn back now.
Then I started working at IKEA, a big milestone in my life so far. Coming out of education, moving into a job that I actually enjoyed and I started to thrive, moving into a full-time role very quickly. I seemed to settle a bit, I have been very fortunate, IKEA are a very supportive company and I have been given so many opportunities, especially at the start. I was lucky enough to be chosen to go on an appliance training trip to Italy, I remember as a 19 year old who had never gone anywhere on her own I was terrified but it was a great experience, one that has shaped me into who I am today.
Italy was fun on my new diet, vegetarians who don't eat cheese are few and far between there so I ate a lot of mushrooms that week! This is my first memory of struggling and feeling embarrassed of having to explain why I didn't eat meat and cheese, also about why I didn't drink in an attempt to feel better. Until this past year, I have felt embarrassed, in fact guilty of having to ask for specially made meals. I guess it is just something that you go through when you have these kind of dietary restrictions.
During this time, I made some great friends who understood me and accepted me for who I was and how I came. They never pressured me to drink or spoke in confusion about my diet, this was just who I was and that was a great time of my life. My confidence grew and I started getting ambitious at work, taking on more and feeling ok without too much stress or illness creeping in. It was there in the background, but it is extraordinary what normal you accept in life when you feel like there is no choice but to carry on.
At this time, I had another focus in my health. I found out that I had carpel tunnel in my right wrist, so although I describe to you a calm time of my life joining IKEA. It wasn't without doctors, tests and hospital appointments, it was just aimed at a different problem. I love playing Badminton, Netball etc and during that time I had been struggling due to my arm and wrist being in so much pain. This led to an operation on my right wrist (which I was awake for - horrible let me just say) and a successful recovery for me to then end up going on yet another trip to Italy just 6 weeks after. Throughout all this time, I was also building my love for American holidays, I had been to Florida 3 times since 2005 and other parts of America on three occasions so I was leading a very normal and fortunate life.
After some years of an almost normal life of living with the restricted diet and battling with the pain from my wrist this is where it all started to decline at a more rapid rate. I was having problems with my eating again, problems with my arms and struggling with my diet and weight, I was going to and from the doctors so much, trying different GPs only to be fobbed off time and time again. Although this was disheartening and quite upsetting, I never gave up because I knew and my family knew there was something wrong and after so long of suffering we needed to get to the bottom of it.
The first issue that was identified was strangely the hardest to diagnose, I was found to have a rare issue in which they found an extra bone in my neck which was pressing on the blood flow to my arms. It is called Thoracic Outlet Syndrome or TOS for short, it is extremely rare and doctors get very oddly excited to talk to you when you have such a thing. Although all I was concerned about was how it affected me and how to manage/eradicate it completely.
It took from 2013 to 2016 for them to diagnose me correctly, three years of going to and from the doctors in pain, a variety of different tests, scans and hospital appointments in as many different hospitals. In the end it came down to me finding a doctor through a Facebook support group, one that a lot of my fellow sufferers were recommending. I spoke to one of the specialists in my area and told them that I would like to be referred to him as he specialises in TOS for the south of England. It still makes me sad that it had to come to that, for myself to have had to go through so many years of pain, stopping sports I enjoyed and the additional stress of incompetent doctors in order for me to get a good result.
I talked the doctor into operating after another year of trying physiotherapy, stretching and straightening my posture. All didn't work and I just needed some help to get past this particular issue! So in April this year, I had a Scalenectomy in which he loosened things up in my right side. This was a tough recovery, I was off work for 9 weeks and for the majority of that I was still struggling with sickness as well.
I started physiotherapy about 10 weeks after surgery and have been good since, no more numbness in my hands or shooting pains down my arms and the strength is slowly getting there. I am very hopeful I will be reunited with badminton early next year when we make our annual trip to Center Parcs! I've got a record to maintain after all, the last time I played my Dad (whilst my arm was dodgy as well) I won so I need to keep that going!
My second issue was a longer and more restrictive diagnosis, this was affecting me in my everyday more than the TOS and not having a diagnosis was hard. My sister in law (to be, at the time) said that her Nan had been having some issues and she recommended me a test which could help me see what foods were triggers for me in more of a comprehensive way. Unfortunately the NHS do not fund these tests as they don't believe enough in the science behind it, so I had to buy it. It is called a York Test, it is about £150 but that sum of money is nothing when you have been suffering for as long as I had.
At this point I had gone completely off dairy, started also cutting gluten and I was still vegetarian, so I wasn't very fearful of what it would come back with as I had already cut out so much. The results said that I was intolerant to Gluten, Wheat, Egg White, Egg Yolk, Cows Milk, Yeast, Sesame and a few other random fruits. You would think that this is a big blow and quite hard to take, but actually I felt relieved, there was something wrong with my eating and I knew it. This was in 2015, I decided to have my final blow out of food at my brothers wedding (they had a chocolate fountain!) and then the week after I switched to my new Vegan, Gluten Free diet that I still adopt today.
As you can see, I still love food (that was a beautiful Vegan, Gluten Free chocolate glazed donut with ice cream) and I am currently going through a lot more of a love relationship by creating this food blog and learning to cook. But it definitely wasn't always that way, eating out at the start was very difficult, as I said before, I was terrified and embarrassed when asking restaurants if they could cater for me. I believe that to be because of the stigma around these kind of diets, I'm sure they come across some people who go Gluten Free because it's the next big thing but that doesn't mean they should then take this out on us. When you have a genuine intolerance and the waiter is looking at you like you're an idiot who is on the new fad diet, it can be worrying in case they don't take your order right and kicks a blow into building confidence to ask about allergens.
I've said this in a previous blog, but I will say it again. If someone says that they can't eat something, take them seriously, yes it may be a fad but also it might be threatening to their health if they eat it and at the end of the day it is their decision what to eat not yours. Anyway I've digressed...
A year went by and I felt ok, the change in diet was obviously helping. It wasn't immediate and I still had bouts of sickness but it had vastly improved my overall wellbeing. So I battled on again, thinking there wasn't much else to be done, this new diet was working enough for me to function and that would be that.
Turning to my most recent fight with doctors, hospitals and tests, this all kicked off again in around April last year. I was getting sick again, hardly eating anything because I was embarrassed by my body when I had eaten and also how it made me feel so sick. I had completely fallen out of love with food, I would get so hungry some days but I would wait until the day before I was off work and binge eat knowing I had the next day to fully recover. This wasn't a way of living and back to the doctors I went, this is when they finally started to take me more seriously, I was now in Reading at a new doctors practice and I was even crying in doctors appointments. It makes me sad that's what it took to make myself be heard but there you go.
I was referred finally to a Allergen specialist, we had a brief chat and the NHS FINALLY after 20 years did some blood tests to see if I was allergic to anything food related. Nothing came up apart from dairy which I already knew about, however in this appointment she apologised for the whole NHS and referred me to a Gastroenterologist, again FINALLY! I had not seen one before this point, which is absolutely crazy considering they are the doctors specialising in the way the stomach works. This is when I went private, I had just had a promotion at work which now entitled me to have private healthcare, I should have gone private way before but I was determined that the NHS should use our Tax money in a good way but they never did.
I had more tests done, first an X-ray which showed there was definitely something wrong, then an endoscopy (not nice at all but I would suffer to get a diagnosis) this showed some inflammation and then finally I swallowed a tablet camera. I imagined this to be like you see in kids cartoons, where the doctor shrinks and gets into a tiny spaceship that you then swallow... I'm sure that wasn't the case but this finally found lots of small ulcers in my small intestine or bowel (I'm not so sciency) which meant I had Crohn's Disease.
I had googled my symptoms for years and diagnosed myself with this previously, but because my blood tests always came back clear they never pursued it. Unfortunately my inflammation markers in my blood don't show up, so all of these years I could have been suffering and I would never have known. Anyway, I told my friends and family and everyone was strangely happy for me, I had been waiting for so long so to find out there was finally something wrong with a name and that could be managed everyone was ecstatic. And so was I, for a little while until it began to sink in exactly what it was that I had.
For those who don't know, Crohn's disease is an aggressive form of Inflammatory Bowel Disease, it means that my immune system is not working properly and can attack my bowel and intestines causing ulcers and inflammation. This then causes issues with diarrhoea, severe abdominal cramps, fatigue, weight loss, inflammation across the whole body and a general feeling of sickness. It comes and goes in flares sometimes relating to stress, other times diet and other times for no reason at all but it will do that for the rest of my life as there isn't a cure.
It explains a lot of the problems I have faced over the years and explains why it kept coming and going, sadly it doesn't necessarily explain the nausea but we are working on that.
So this is where I am today, after a long stint of steroids to really fight it earlier this year, starting one drug and it not working, (all whilst having surgery for TOS) I now start this new drug infusion which a lot of research, doctors and fellow sufferers have raved about. I have been fighting this for so long, it is great to have an answer but you also go through a grieving period for the body you thought you had. Although I'd been sick, I had always dreamt that I would just be cured really easily and then move on, I never thought I would be diagnosed with a Chronic illness that would disrupt my life and keep coming back.
At this point in my life I have decided that enough is enough, I have had such a tough year and have been fighting to keep healthy for a very long time. I want to give myself and my body a break, it deserves it, after all it has gotten me through several promotions at work, a great childhood, amazing trips to different countries, some great friends, a wonderful family and an amazing boyfriend. I can't ask to be in a better life, all I need to do is pay my body back by listening to it and giving this drug a chance to work. Then I can get back to more of the things I love and go back to work as a happier and healthier version of myself.
If you have gotten this far, I want to thank you for reading my health journey. I'm not sure if it has helped you personally, or if it has made you think differently of me or a loved one or if it has just made you respect invisible illnesses more. I'm glad that you have read this far and that you take something from it.
My last words will be shout outs:
Firstly to my incredible Mum & Dad because they have been there every single step of the way, they were at endless appointments, offered support and words of encouragement throughout. They even made a few doctors a little unhappy with their persistence, but that is what you do for your child when they are sick. Thank you for a wonderful life so far and for being the best you could ever be.
My brother Mat and sister in law Ally, they were always there to speak to when things were becoming too much especially in my teenage years and could take me away from all the hubbub with distraction and encouragement.
My friends, they have been a great support.
Lesley is there to force me to leave the house, do things outside of my bubble and take my mind away from all the stress of living like this.
Emlee is always there to put a smile on my face, have a good old natter and offer advice too (plus the twins are so cute, they take your mind off of anything horrible!).
Then there is Gemma, my oldest friend. We are both going through our own health battles but we always have a laugh and usually some delicious Vegan food!
Last but not least is Ingrid, I call her my big sis, she's always there for me no matter what and has brilliant bits of wisdom for me. Plus she always pushes me to do things I have been putting off!
Finally to the charity Crohn's & Colitis UK, they help a lot of families and people deal with this diagnosis whilst working to make more awareness about the diseases.
Thank you to you all.
https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/crohns-disease