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How do you do it?

” How do you do it?” is one of the most common questions I get asked from people who have just found out about the extent of my illnesses.

The honest answer is, I don’t really know. Chronic illnesses are weird like that, for a lot of people they just creep up on you, you wake up sick one day and don’t get better. Some people stay the same or have a long period of stability, some people get progressively worse, some people relapse and remit over time.

In my personal experience, my chronic illnesses have built up over time, at first there was only joint pain, then the coeliac and with that came a distinct lack of energy, then came the crohn’s with its nausea and stomach cramps, then I was officially diagnosed with arthritis, then I had my jaw surgery. then came the cluster headaches. I dealt with things as they came along and for a long time i tried to keep living my life as normally as possible, I kept going to school and then college, managing my pain any way I could until it just became impossible to do those things. When I look back over the last 19 years I genuinely don’t know how I have got to this point. So many things have happened, hundreds of tests, hospital stays, procedures, IVs, surgeries and injections. I have failed multiple medications and treatment plans and I have had constant debilitating pain in one part of my body or another through all of it.

When you stop and think about everything you are dealing with things it can be really overwhelming and there have definitely been times when I have thought I would stop functioning, where I couldn’t see how I was going to keep going for even another day, and then a new day comes, and I get up and brush myself off and go on with life. While you’re in the midst of the pain it can be difficult to see how much you’re actually going through, it’s almost impossible to take in every emotion, every bit of physical pain just merges together in an endless slurry. Its only when you look back with hindsight you can really see how much you’ve been through and for me those are the moments where I struggle to see how I am going to keep going.

The problem with chronic illnesses of course is that they never stop, so even when you stop and look back you’re still not seeing the full picture because it isn’t over yet. I think its because of this that I struggle to verbalise how I “do it” or really take in exactly what I have been dealing with. What I will say is that a lot of people think they would never be able to cope with a life like mine but the truth is when you get sick you aren’t given a choice, you have to fight if you want to keep living and that fight won’t suddenly stop. Most people would be amazed at what they could cope with if they really had to do it.

Generally you try to make the most of the things you can control, you try to forge a life for yourself the best that you can, you attempt to maintain relationships and surround yourself with people who love and support you. There is no secret to getting through or dealing with chronic illnesses, no secret to dealing with daily severe pain or coming to terms with knowing you won’t get better, but I promise you in the majority of cases you will find a way through. Putting one foot in front of the other is a good place to start. It’s all I’ve done for the past 19 years and it has got me this far. The one good thing I can say about living with chronic illnesses is it has taught me to be grateful for every day and every opportunity, because I don’t know when my last chance to do something will be. My health has been deteriorating steadily for a long time and I have had a few “lasts” that I didn’t know were coming, like my last 8 mile walk, my last meal in a restaurant without worrying about getting sick, my last pain free day, and I will have more “lasts” throughout my life, and although thats incredibly hard, it has taught me to enjoy every last second that I can.

Please don’t tell me it could be worse

Everyone has different ways of dealing with difficult things that happen to them, some people find it easier to remind themselves of all the good things that have, some try to focus on all of the things they have, some try to focus on people who “have it worse” and some have to deal with it head on.

Like many people with chronic illnesses, I get a lot of comments and advice about how best to deal with things, usually from people who dont know me and my full story. They usually mean well , but can be inadvertently hurtful or insensitive with their advice.

After spending the last 19 years of my life in one form of pain or another I have had more than enough chance to work out what helps me and what doesn’t. I have a history of bottling things up because I dot want to be seen as complaining or because I thought I shouldn’t say anything because “it wasn’t that bad compared to others”. It has taken me a long time and a lot of hard work to get to a place where I can now be more open when I am struggling and I have even started an instagram account where I share some of the ups and downs of dealing with chronic pain and chronic illnesses. Having said that there are still details that I choose to keep private, I don’t share much about what has happened to me in the past and I keep most of my personal life like my relationship with family and friends off account .

The last few years have been particularly tough, the pandemic had a huge impact on my life and continues to do so even now, I have also suffered two very close bereavements and my health has continued to deteriorate. There has been a big emotional toll as I have tried to learn to live in a new normal, in a world where I could still catch Covid 19 and end up very seriously ill. There have been a few occasions where I have attempted to share just how tough I have been finding things and instead of empathy and understanding I have been met with people telling me just how much worse they think I could have it.

Now, I understand that for some people this is a helpful way to look at things, and it brings things into perspective but for me it feels very invalidating. Technically things could always be worse for almost everyone, even those in the most heart breaking situations could theoretically have it better than someone else. Suffering is not a competition, it is relative. If there are two people in A&E with broken legs and one of them has also broken an arm, it doesn’t mean the person with “only” broken legs is suffering any less.

I am the type of person who doesn’t like to burden others with my problems, I will often do everything possible to carry on going and not show how much I’m really struggling, especially emotionally. On rare occasions, and in rare spaces (like my instagram) that I feel safe enough to share even a fraction of how I really feel, I really do not need to be told that it could be worse. I have gone though a massive amount in my life, including harmful relationships but these last few years have been the hardest of my life and I rally don’t want to loose one of the only places I feel able to be honest about how I am feeling.

Differences between IBD and IBS

Both IBD and IBS can be distressing and difficult to live with, they can both cause lots of pain, discomfort and difficulty with day to day life, but there are some significant differences and its important to know what they might be so that proper diagnosis can be sort.

Firstly I want to say that anyone facing symptoms that they aren’t sure about, or anyone facing symptoms that are new or more severe than what’s considered normal for them should seek medical attention, I also want to say that any medical condition is hard to deal with, this post is not meant to play one condition against the other, my hope is to provide information that may be helpful when seeking a diagnosis, and to raise awareness of both conditions.

Symptoms

One of the easiest ways to differentiate the two conditions is to look at the potential symptoms.

IBD

Symptoms of IBD can include

  • Blood in the stool
  • Diarrhoea
  • Abdominal pain
  • Nausea
  • Vomiting
  • Constipation
  • Joint pain
  • Eye inflammation
  • Nutritional deficiencies
  • Increased inflammatory markers in blood and/or stool
  • Fatigue
  • Weight loss
  • Mouth ulcers
  • Bloating
  • Passing mucus
  • Sudden and uncontrollable bowel movements

IBS

Symptoms of IBs can include

  • Stomach pain which is often worse after eating but better after going to the bathroom
  • Bloating
  • Dirrhoea
  • Constipation
  • Flatulance
  • Passing mucus
  • Tiredness and lack of energy
  • Feeling sick
  • Trouble peeing like needing to pee often or feeling like you cannot empty your bladder properly
  • Incontinence

Blood in the stool, fever , anemia and unexplained weight loss are not symptoms of IBS, if you have these symptoms its really important that you talk to your doctor, even if you have a previous diagnosis of IBS. You also need to make sure that you tell your doctor if you have a family history of any bowel diseases or cancer, including coeliac disease and inflammatory bowel disease.

Testing

Regardless of what you think you might be suffering from, its important to see a doctor, I understand that some of these symptoms may be embarrassing for you, but it’s important to talk about them, and the doctors wont judge you, they will be used to these conversations, they won’t be surprised and they will want to help. If a doctor ever makes you feel uncomfortable, or you feel like they aren’t taking you seriously please ask to see someone else, it’s so important that you are cared for properly.

When you see a doctor, blood tests and stool samples should be taken to look for inflammation, infection and to look for blood in the stool (poo). It is also important that you have tests to look for any nutrient deficiencies, especially if you have been having trouble eating or have been loosing weight.

If these tests show there might be something that needs further treatment, you should be referred to a gastroenterologist who will organise imaging such as an MRI and possibly a colonoscopy.

Key differences

A key difference between IBS and IBD is how they impact the body internally. IBS is what’s known as a functional disorder, which means there’s a problem with the way the gut functions and this causes the symptoms, whereas in IBD, the immune system attacks healthy cells in the digestive tract, causing inflammation, scarring and long term damage.

While IBS is undoubtedly extremely difficult to live with IBS, it. Does not damage the digestive tract, it does not cause an increase in cancer risks or life threatening complications. However, if you are suffering with IBS you still deserve good care from medical services, so don’t let them turn you away

IBD causes inflammation which can do permanent damage to the digestive tract. Ulcerative colitis damages the colon and the rectum while crohns can damage any part of the digestive tract. There are also extra intestinal manifestations such as osteoporosis, eye inflammation, joint pain and there is an increased risk of some types of cancer. Left untreated, or if treatments fail, IBD can have fatal complications including a perforated bowel or a fatal infection due to the immune suppression caused by some of the treatments needed to control the disease.

It is of course possible to suffer from IBD and IBS at the same time, and there are lots of other digestive illnesses, so , whatever diagnosis you are given, please do keep fighting if you feel something isn’t right, and remember no matter what you’re told IBS does not cause inflammation, bleeding or nutrient deficiencies so if you are suffering with any of these you need to pursue a different diagnosis. It can be hard to advocate for yourself with people who you think should know more than you, but it is super important and could save your life.

World IBD Day 2024

Sunday 19 May 2024 is world IBD day,

To mark this important day I thought I would talk about IBD, the main types, symptoms, diagnosis and treatments.

IBD stands for Inflammatory Bowel Disease, it is a group of conditions that cause inflammation and damage to the digestive system. There are a few different types of IBD with the main two being Crohn’s disease and Ulcerative Colitis . The exact cause of Crohn’s disease is unknown, but it is thought that there is an auto-immune or auto-inflammatory component. One train of thought is that the immune system reacts to something in the gut – possibly bacteria- and starts to attack it, causing damage, research into the causes and mechanisms of IBD is currently on going and new theories are coming out all the time.

Crohns disease

Crohn’s disease can impact anywhere in the digestive tract from the mouth to the anus, it causes inflammation, ulceration, scarring and damage to all layers of the bowel, and it can cause complications such as fistulas which are abnormal tracts between one part of the body and another, such as between the bowel wall and the abdominal wall. In Crohn’s disease the damage can be sporadic, there can be patches of inflammation and patches of healthy tissue, which means that if you looked at only a small section of tissue, you might miss the disease and think it is not present.

Ulcerative colitis

Ulcerative Colitis (UC) impacts the large intestine (known as the Colon) and the rectum. Small ulcers develop on the lining of the colon which can bleed and produce pus. In ulcerative colitis the inflammation is continuous, and it only affects the inner most lining of the colon.

Indeterminate colitis

In about 10% of people with IBD, features of both UC and Crohn’s are present, making it impossible to distinguish between the two types of IBD, in these patients a diagnosis of inderminate colitis is made.

Symptoms

Symptoms vary from person to person and even between different flare ups in the same person. The most well known and more common symptoms include

  • Stomach pain
  • Nausea
  • Vomiting
  • Weight loss or weight gain
  • Bloating
  • Diarrhoea
  • Nutrient deficiencies
  • Bleeding from the gastrointestinal tract

While these symptoms may seem obvious for a digestive disease, there are other symptoms that may seem less obvious and these include

  • Joint pain
  • Fatigue
  • Eye inflammation
  • Mouth ulcers
  • Osteoporosis
  • Skin issues

Diagnosis

Because the symptoms mimic so many other conditions IBD can be hard to diagnose, unfortunately it often takes people a few years to get a proper diagnosis . Getting a diagnosis usually starts with speaking to a GP and getting some basic blood tests and a stool sample should be taken to look for blood, inflammation and signs of infection, there may also be a physical examination of your stomach to check for any other signs of issues,

After this, if the GP deems it appropriate, they will refer you to a gastroenterologist which is a specialist in the digestive system who may order further testing including an MRI and/or a colonoscopy or endoscopy. The best way to get a firm diagnosis is to get a biopsy of the intestine which can be done during a colonoscopy. The biopsy can help determine if you have Crohn’s or UC or if there is something else going on. Sometimes these tests will come back clear despite continuing symptoms. If this is the case, you can ask for other testing such as a barium meal follow through or a white cell scan which is a specialist scan where the white blood cells are tagged with radiation and a special scanner is used to follow them. If the white cells are seen to be concentrating in a specific area it can indicate inflammation which can be used to help with diagnosis.

Whatever tests you have, don’t give up if you are still having symptoms and feeling unwell, it’s important to stand up for yourself and not to let anyone put you off, getting a diagnosis is important for any illness, and its not ok for anyone to be left suffering.

Treatments

There is no cure for IBD, so treatment aims to control the disease and help to improve quality of life by getting symptoms under control.

Steroids

Corticosteroids like prednisolone or budesonide are used during the acute “flare” phase of the illness. A flare up is when the disease is active and causing more symptoms than the day to day baseline and steroids control these flare ups by reducing the inflammation in the digestive tract. Although they are usually very helpful and can get symptoms under control very quickly, steroids are not a long term option as they come with some quite significant risks including bone thinning, mood disturbances and the possibility of steroid dependancy.

Liquid diets

Liquid diets can be used at any age but they are most commonly used in children to give the gut a chance to rest and heal, they can also be used to try to help someone gain weight and nutrition if they have become malnourished as a result of their illness. Liquid diets use a very special form of formula food, which can be partly or fully predigested and may be highly calorific. They are tough to deal with, but they are a very low risk way of treating the inflammation and pain associated with IBD.

5 ASAs ( aminosalicylates)

These drugs have an anti-inflammatory component and they are chemically similar to aspirin, they dampen down the inflammatory process and allow the damaged tissue to heal. They are generally very safe drugs and they are often used as a first line treatment, especially in cases of IBD that aren’t very advanced or severe. The downside is they have limited effectiveness, so they aren’t appropriate for people with advanced or severe disease.

Immune suppressants

Immune suppressants work by calming down the immune system in the hope of stopping the damage to the digestive tract. The downside to immune suppressants is that they leave you more prone to infection and can have some serious side effects including liver problems, it’s important to have regular blood tests before and during treatment.

Biologics

Biologics are medications that work on the immune system and modulate it. Different Biologics work on different parts of the immune system, infliximab and adalimumab for example are both anti-tnf medications. Biologics block the part of the immune system that they are targeted at, with the aim of stopping any further inflammation from occurring. Like immune suppressants, Biologics come with a higher risk of catching infections and difficulty fighting them, they can also come with a higher risk of some types of cancer and they can lead to issues with organs such as the liver. Most Biologics are delivered by infusions or injections, the injections are usually self administered at home by the patient.

Surgery

Sometimes medication isn’t enough to stop the IBD from spreading or causing complications like abscesses and surgery can become necessary. There are a few types of surgeries that may be performed with IBD including bowel resections where a part of the bowel is removed and the healthy ends are joined together, stoma surgery where a part of the bowel is removed and the end is pulled through an opening in the abdomen, abscess lancing and removal and fistula repair surgery.

Worst case scenario

Although thankfully quite rare, people can die or be left with serious life long impacts from IBD and its complications . People with Crohn’s disease may experience a perforated bowel, which is a medical emergency or there may be complications related to surgery done to treat the IBD. People with IBD are more at risk of cancer, and some of the treatments also increase the risk of some cancers such as skin cancers, many of the treatments also reduce the function of the immune system which means patients are more susceptible to infections and may have more difficulty fighting off viruses like Covid and the flu.

This is why we need research for a cure and kinder more reliable treatments. Current treatments are much better than we had even 10 -20 years ago, but they don’t help everyone and they do have the potential to fail, and they all have potentially serious side effects. If you would like to help, just sharing information about IBD can be really helpful, the more people who know about IBD and its signs and symptoms, the better chance we have of getting people diagnosed early and stopping the worst of the damage. Increasing awareness will also increase funding as people will be more aware of the need to fundraise, and doctors becoming more aware will mean people are treated earlier and more efficiently.

Why I disappeared

Last year was one of the most difficult years of my life, I have been through many difficult things, but nothing compared to the sudden and gut wrenching loss of my dad.

In June 2023, my Dad went to work one morning and within hours was driven home by his colleague. My sister managed to talk him into going to the doctors, and the doctor sent him into the hospital for tests and monitoring. This was a Thursday, by the early hours of the Sunday morning, he was gone.

I’m not going to go into immense detail about the run up to his passing or his time in the hospital out of respect to my Dad, my family and myself. What I want to do is share a little of how I’m doing and I can do that without taking away anyone else’s dignity.

The first and most obvious thing is I miss my Dad! I still live at home so I saw my dad every day, I kissed him goodnight every night. I sat and watched his quiz shows every evening tag teaming the music rounds, he cooked me Sunday roasts, taught me how to cook a steak or a chow mien, and always knew when I needed an extra hug at the end of the day. To this day there are still moments where I forget that he’s gone for a tiny second and I expect him to call me from the supermarket and ask what I want for dinner, or to hear his alarms going off all day on a Sunday. Then it hits, that’s never going to happen again, and it absolutely crushes me every single time.

Then there’s the guilt, as I said I lived with my dad, why didn’t I make him see a doctor, why didn’t I do something, why didn’t I make him seek help? The truth is, I tried. Me and my mam tried SO hard, but he didn’t want to, and we didn’t want to go behind his back. Since it happened, I’ve had people ask why I didn’t go to them about it, but the truth is my dad would have seen that as a betrayal, he wouldn’t have forgiven me for going behind his back like that, he forbade my mother from telling my siblings anything, and I couldn’t risk him blaming her either. We did what we could, we offered him as much help as he would allow and in the end I think he went the way he wanted, peacefully. He never liked needles or doctors or hospitals, he wouldn’t have wanted to be poked and messed about with, and I try to remind myself of that when the guilt strikes. I also feel guilty for the fact that during the pandemic we couldn’t have people in the house because I needed to shield, but I have to remember that my dad wouldn’t have wanted me in danger, and he was more than willing to see my siblings outside or in their homes. I know he wouldn’t have forgiven himself if I got sick because of an action he took. The truth is we all thought we had more time. I spent the entire pandemic imagining what it would be like when I could reunite with my family, and in every single vision, my Dad was at the heart, watching his kids be together, proud and loving.

The other thing I want to talk about is the physical impact. I wasn’t sure about sharing this because I don’t want it to be taken the wrong way or for people to think I only care about myself because that’s absolutely not the case, one of the worst things about this is watching what my mam and siblings are going through but its not my place to tell their stories. Grief, like any strong emotion, has physical impacts, especially on people who are already unwell, and I want to share this because when other people go through it I want them to know that its normal, and its ok to talk about it. For me the biggest physical impact is that its really flared up my Crohn’s disease and cluster headaches. I have been in really severe pain ever since Dad passed and I haven’t been able to get any kind of control over it. As well as the physical pain from my illnesses being worse, the mental toll of dealing with them is much higher without my Dad. My dad never had to say much to comfort me. I’d often be sat on the sofa, thinking that I was actually hiding my pain quite well, and he would always glance at me as he went outside for a cigarette. I could always tell when he was worried about me because that glance would linger, he’d pause, look me right in the eye and I knew he could feel my pain, and that alone was so comforting. Then there were the hugs that went on forever, usually when I was about to go to bed, but sometimes just when I was passing him. We were always affectionate, but on the bad days or the worrying days, I’d get an extra long, extra tight hug, as if he hoped he could protect me from the world by holding me closer, and I immediately felt my problems melt for those minutes. As much as anything else, my Dad showed me how to love by being such an amazing husband to my mam, and it’s because of him that I now have an amazing partner.

A few other, smaller things happened after this which delayed my return to blogging, such as catching the flu for 6+ weeks and having to go to the hospital, but the vast majority of the year was taken up by trying to put one foot in front of the other and help my Mam as much as I could. We have just got through our first Christmas , and I got through my first birthday, and it hurt, but we made it. I know that I will one day learn to live with this loss, but there will always be a part of me missing.

Toxic positivity

While many people strive to be a positive influence on the world and to think and behave with positivity wherever possible, there is such a thing as too much positivity, this is known as toxic positivity.

Toxic positivity occurs when someone is pressured into displaying only positive and happy emotions and repressing any emotion that may be regarded as negative. This creates an atmosphere where people who are going through hard times or experiencing trauma feel unable to talk about their experiences. Toxic positivity is often dismissive of peoples emotions and can lead to isolation and unhealthy coping methods.

One of the big problems with toxic positivity is that you may be a part of it without ever meaning to or realising. Examples of toxic positivity include phrases like “positive vibes only” or “don’t be a downer”, even something as simple as “you’ll be fine” can be toxic to someone trying to express their emotions. When phrases like this are used, it makes people feel like they are unable to say anything that isn’t totally positive, causing them to shut down. If these phrases and attitudes are wide spread it creates a culture where people are unable to express their true feelings and where they feel as though they are failing if they are unable to be happy all of the time.

As humans, we feel a wide range of emotions and all of them are natural and need to be expressed. When we stop someone from expressing their emotions, we trap those emotions inside, leaving people unable to deal with them in a healthy way. A lot of the time these emotions then come out in other ways including self medicating with alcohol or drugs or self harming, People who are on the receiving end of toxic positivity can end up feeling as though they are wrong to feel negative emotions in the first place which may mean that they become extremely hard on themselves and hold themselves to impossible standards. Toxic positivity can also cause problems for the person delivering it as they may internalise the idea that negative emotions are bad or shouldn’t be expressed, leading them to hide their own emotions find their own coping mechanisms

Diagnosis story – Crohn’s disease

Crohns disease is a type of Inflammatory Bowel Disease (IBD) which a can affect anywhere in the digestive system. Common symptoms include stomach pain, nausea, vomiting, weight loss, bleeding from the bowel, loose stools and extreme fatigue. These symptoms are also common in many other diseases and this means that people with IBD often face months or even years of symptoms, testing and misdiagnoses before finally being diagnosed with IBD. I hope that by sharing my diagnosis story I can help raise awareness and hope during the diagnosis journey.

Part one – First symptoms and initial investigations.

The first indication that something wasn’t quite right came in the form of mild to moderate abdominal pain. At the time I was already under a paediatric gastroenterologist for coeliac disease so we told them about my symptoms and we did some basic testing. We started with some blood tests and moved on to x-rays, an ultra-sound and a barium follow through where I swallowed a barium drink and multiple X-rays were taken as the barium went through my digestive tract. We were told there was nothing significant on the tests but that we should closely monitor my weight and pain levels to make sure I didn’t deteriorate. We later found out that there were slight changes on the barium follow that could have indicated crohn’s but because of the newly diagnosed coeliac no one really thought much of it. We were told that the symptoms were possibly from my body recovering from the damage related to the coeliac disease and the big change in my diet.

Part two – watching, waiting, anticipating

After the initial tests were inconclusive, we decided that a watch and wait as my consultant didn’t want to put me through any more invasive testing as he felt I had already been through enough. Over the years the pain never really went away, and I began to slowly loose weight. My paeds consultant was concerned about the weight loss as I was already underweight for my height and it was beginning to become dangerous. Unfortunately at this point I aged out of paediatric care and had to be moved to the adult department and a new consultant. My paeds consultant had written to the adult gastro stating his concerns and advising close monitoring but unfortunately this was ignored. It took several strongly worded letters for me to finally be seen in clinic, and my concerns were totally dismissed because my blood tests were “ok”. I was told that my symptoms were possibly “functional” or that maybe my coeliac wasn’t being properly controlled and dismissed.

Part three – Begging for tests and worsening symptoms

Around 4-5 months after my 19th birthday my pain began to get significantly worse and was having major impacts on my day to day life. I was also continuing to loose weight despite eating as much as I could. At this point I knew something needed to change so I insisted on an appointment with my consultant and essentially begged him to do more testing. I eventually managed to convince him to organise an MRI scan. The scan took place in early August and I was told I would get the results within four weeks. Four weeks came and went but there was no sign of the results so I assumed there wasn’t anything important on the scan and tried to carry on with life.

Part four – Hospital trips and final diagnosis

After receiving no update about the MRI scan for 6 weeks I went off to Uni thinking it must have been OK. We don’t know if it was the stress of moving to a new city, starting a nursing course and being away from my family for the first real time or if it was just a coincidence but this is when things really went downhill. I lost a large amount of weight in a very short amount of time, my stomach pain became unbearable and I was struggling to eat or even drink enough. I was suffering severe nausea and vomiting and couldn’t even keep water in. At this point I decided I needed real medical help and went to the A&E at the nearby hospital where I was kept over night. This was the first of three admissions where they gave me pain relief and re-hydrated me. During the third admission they were discussing exploratory surgery to try and find out what was happening, but the consultant who came in the next day decided that this wasn’t necessary. Instead they diagnosed me with a ruptured ovarian cyst and instructed me to take a week off uni and go home with my parents to rest and be looked after.

While this was unfolding, I decided to try and contact my gastro consultant back in Wales to see if he could tell me if anything came up on the MRI scan. When I eventually got hold of him and told him what was happening, he told me that the MRI had shown narrowing in the bowel indicative of Crohn’s disease. He told me I would need further testing to make a definitive diagnosis. In November 2012 I had a colonoscopy with biopsies which found a narrowing called a stricture as well as active inflammation in the form of ulceration and redness. This confirmed the diagnosis of inflammatory bowel disease and because of the location (end of the small bowel) it was decided that I did indeed have Crohn’s disease.

Cluster headaches – more than a sore head.

Headaches are an extremely common complaint, most of us have experienced headaches at some point in our lives. For the majority of people, headaches are an inconvenience and may cause difficulty performing tasks for a short amount of time but are easily controlled with some over the counter medicines and a good nights sleep. There are however a number of headache conditions that cause significant levels of pain, the most common being migraines. For those unlucky enough to suffer with chronic migraines they can be extremely debilitating, often causing nausea and vomiting and leaving the sufferer shut in a dark room for hours or days at a time. The condition I want to talk about today is called cluster headaches.

Cluster headaches are classified as rare but they are about as common as MS. They can occur in women but are more common in men and although they can begin at any age the most common age of onset is from the early 30s to mid 40s. The main characteristic of cluster headaches is a severe pain in and around the eye which is sudden onset and not relieved by normal pain medicines. The pain comes in “groups” or clusters, often reoccurring multiple times in the same day for weeks or months at a time followed by a period with no headache. This is called episodic cluster headaches. For some people the cluster headaches happen every day with no period of remission (no headache for weeks or months) this is known as chronic cluster headaches. The exact cause of cluster headaches is currently unknown but it is thought that the blood vessels around the occipital nerve dilate (widen) and put pressure on the nerve causing extreme pain.

Along with the very severe pain, other characteristics of cluster headaches include –
* Swelling around the eye on the painful side
*A blocked or runny nose
*A red and watering eye
* A smaller pupil in one eye
*Drooping of one eyelid
*Pain lasting from 15 minutes to 3 hours and reoccurring throughout the day
* A sweaty and flushed face

Unlike some other types of headaches, normal pain medicines are not effective in managing cluster headaches. Treating cluster headaches is difficult because many medications take too long to begin working and once a cluster headache is in full swing it’s usually too late to stop it.

Therefore, treating cluster headaches involves a mixture of “Abortives” that stop an acute headache and “preventatives” that try to stop clusters long term. Treatments include

* Sumatriptan nasal sprays or injections – Sumatriptan is an abortive that is used at the onset of pain. It’s also available as a tablet but these are not effective in cluster headaches. Nasal sprays work for some but injections are the best option for most people. Injections work quickly and for some people reduce the pain within 10-20 minutes. The downside is that you have to inject yourself and the side effects can include dizziness, tiredness and nausea.

*High flow oxygen – The exact way that oxygen helps is uncertain but one of the theories is that it causes constriction of the veins in the head, relieving pressure and inflammation. High flow oxygen works for a lot of cluster headache patients and its a good option because its very low risk.

*High dose steroids – Steroids reduce inflammation and can be prescribed at a high dose for a short amount of time to try and give patients a break from the cluster headaches. They carry a lot of side effects so can’t be used all of the time, but they are a really useful tool in the fight against clusters.

* Verapamil – Verapamil is the drug of choice for preventing cluster headaches, it reduces dilation of the blood vessels therefore preventing the debilitating headaches. The downside of this treatment is that it can cause complications with the heart and breathing, so ECGs are very important before and during treatment, especially when doses are increased.

*Occipital nerve blocks – During an occipital nerve block high dose steroids and local anaesthetic are injected around the occipital nerve in the hope of stopping the pain associated with cluster headaches. When they work, nerve blocks can relieve symptoms completely for weeks or even a couple of months at a time. Unfortunately the success rate is only around 50% and there are risks including infection so they are often reserved for patients who haven’t had success with other treatments.

So far I have tried all of these treatments but still suffer daily with multiple severe headaches. At the moment my best treatment is high flow oxygen which greatly reduces the pain of attacks. Unfortunately my situation isn’t that uncommon among cluster headache patients so we really need more awareness and funding to help with finding more consistently effective relief.

For more information on cluster headaches or if you’d like to help find the cure, please visit Ouchuk.org.

Faith in the midst of chaos.

Something I don’t talk about as much as I would really like to is my faith. Growing up my parents allowed me to figure out for myself what I believed in, they didn’t want to push me towards a specific religion so they told me the basics of what they believed and then answered any questions I asked.

Most of my early exposure to religion was through school, my primary school had its own little prayer that we said in each assembly and we read child friendly versions of parts of the bible and some of the parables. We also had a visiting pastor from the local church who would tell us stories and explain parts of the bible in a really fun way and I really enjoyed those visits. While other children just thought the stories were fun and moved on, they spoke to me on a different level and many stuck with me throughout childhood. At that point I knew I believed in God and Jesus but I wasn’t really able to say much more than that, I couldn’t tell you if I identified as Christian, in fact many people who did identify as Christian told me that I didn’t fit in. I wasn’t baptised or christened, I didn’t go to church regularly and all sorts of other things that people told me I “had” to do. I did, however, believe that God was taking care of me, I believed that I could talk to him (although as a child my “talking” was pretty funny) and I believed that God could make real changes in my life.

When I was around 10 years old someone told me a story about a monster from a horror film. This monster scared me so much that every night before bed I would ask God to stop the monster from being real and ask him to protect me from it. I never called it praying, at the time I didn’t realise that praying doesn’t have to be perfect, but when I got a bit older I realised that my 10 year old self was indeed praying. While as an adult I know that the monster was never real, and that it would never have been able to get me, as a 10 year old that monster felt real, the fear whenever I thought of it was real, the panic when I first heard about the monster was real, and so was the comfort I felt when I asked God to take care of me each night. I now realise that although the danger was never actually there, the safety I felt in God, the protection I felt when I prayed was totally real, and that was my introduction to the peace of believing in Gods love.

As I got older, I began to question where I belonged. A lot of people made me feel like I wasn’t “allowed” to call myself christian because I didn’t do all the things that they did. This was especially prominent when I began to suffer with health problems. People would say that I must have been a bad child, that God was punishing me or my parents, that I wasn’t getting better because I wasn’t praying hard enough or because I didn’t believe it was possible etc. I felt like an outsider, I felt lost and alone. I still strongly believed in God and wanted to be able to express that, but I was being made to feel like I didn’t deserve it.

This impacted me so much that when my now fiancé (then best friend) asked me about religion I said I wasn’t a Christian. He was from a very Christian background and his parents had concerns about him being so close to a non-believer. During a later discussion, he mentioned me “not believing” and I was deeply offended. I strongly and forcefully corrected him – “I never said I don’t believe, I said I’m not a Christian because I’ve been told I can’t call myself that” .

That sparked a deeper conversation where I told him the things that I believe, I poured my heart out to him and at the end he turned to me and said “you ARE a Christian, those people who told you that you can’t be are wrong, they’re putting on a show but what makes you a Christian is what you believe inside and how you live your life, not just going to church or being baptised”. We have had many more conversations over the years and each time I feel more and more secure in calling myself a Christian, but more than that, I feel that my soul is being heard and that is amazing.


Something I have encountered many many times is people who can’t understand why I don’t want/ pray to be healed. They say I can’t really be a believer and not think I’ll be healed. Here’s the thing – I believe that one day I will be given a body that doesn’t hurt, that doesn’t make me sick, doesn’t make me cry, and that allows me to live without fear, but I believe that I am only promised that when I get to heaven. I believe that God has the power to choose to heal me now, but I believe that its not a promise, I believe that there is a reason I am sick. I believe that my life is more rewarding because of the experience of being sick. Having chronic illnesses is hard, having constant pain, sickness, exhaustion and fear is hard, but it is also beautiful. I believe that my illnesses have taught me compassion, empathy and patience, I have learnt to find happiness on the hardest days, I have had experiences that I previously would have been too scared to enjoy. I have learnt to see opportunities and seize them because I know I might not get another chance. I have felt serious fear but I have also experienced extreme peace. I don’t pray for my illnesses to be healed, I pray for the strength to face them.

There have been many times where I didn’t think I could cope any longer, long nights of severe pain where I have begged for relief, and although the pain never goes away, I have felt extreme comfort. I have felt the fear leave and my body relax, I have gone from feeling desperately alone to feeling loved and calm.

One of the most prime examples I can give is being changed from IV medication to injections. For around 5 years I had medication through IV infusions every 8 weeks. The medication did wonders for my crohns and improved my quality of life but my veins have never been good. I have always had small and weak veins that are hard to find and often “blow”. The longer I stayed on IVs the worse it got, I often had to endure 6-8 needle pokes before a working IV was established and then I had to be super careful or it would stop working. I often left the hospital covered in blood and bruises, my arms would hurt for days and the bruises would last for weeks. It was getting to the point where we were never sure if I would actually get my treatment because my veins were so damaged. It started getting to the point where I was having to force myself to go to each appointment. I never complained, I never expressed how hard it was, but internally it was getting harder and harder to walk through those hospital doors. The final push came when I attended an infusion appointment and we were seriously considering me having to come back a different day. We had one last attempt and got an IV in a really painful place on my wrist, and then I almost fainted. Coming out of that I was broken. I silently told God that I couldn’t keep this up any more, the mental stress of never knowing if I’d get my treatment, never knowing how many painful attempts they would need, how many bruises I would end up with was really starting to cause burn out. When the next appointment came, I silently begged for things to change, and it did. That was the day they told me I was going to be the first to change to self injection treatments. The relief of walking out of the hospital knowing that would be my last infusion made me feel like I was walking on air. Each time I inject it feels like a miracle. And that is how I experience my faith, I don’t wait around expecting God to fix me, but I walk through each storm and lean on God when it feels too much to do alone. I recognise the small miracles and I realise that even the smallest moments can create big changes. That’s how I maintain faith in the chaos.

I don’t believe I need to be “healed”.. here’s why.

When you have been dealing with chronic illnesses for any length of time you inevitably come across people who think you need to be healed/cured/fixed in some way. This can come from all types of people, there are people who think that if you’re a good Muslim, Christian, Jew, Hindu etc then you will constantly be praying for healing. There are people who think that you can’t possibly be OK with being sick or disabled and think that you should be constantly seeking cures, trying everything no matter how extreme or how little benefit it will actually have. Whenever I am faced with this I give my honest response – I don’t believe I need to be healed, and I’m going to attempt to explain why in this post.

Before I get to the explanation I just want to say that if you’re someone that really wants to be healed, that needs to hold on to the hope of healing to cope or to get through, or someone that believes in trying every remedy possible to try and make things better then that’s absolutely ok. I’m not judging you and I respect you. All I am asking is that you give people like me the same respect and accept that we have accepted our situations.

One of the hardest things about dealing with a diagnosis of a chronic illness is learning to accept that you will be living with it for the rest of your life. It can take months or even years to stop hoping you’ll wake up one day and it will all have disappeared. It often takes a lot of processing and hard work to finally be ok with yourself as a disabled or chronically ill person. I have been in some form of pain since I was around 12 years old. I have a long list of diagnoses and each one adds another layer of things I have to learn to live with. Constantly being told by society that I need to be fixed or healed makes that acceptance so much harder as it can make it feel like you’re not good enough as you are, or that you should somehow be making more effort to get better, and you are failing if you don’t.

For me, accepting that my illnesses are permanent and that I am not going to suddenly get better has actually helped me to enjoy my life in the here and now instead of putting things off. If you’re constantly waiting to get better you can end up putting off experiences and relationships because you think you’ll have chance when you’re better and that those experiences will be more valuable as a healthy person. I can say with certainty that having chronic illnesses makes so many of my experiences so much richer. I have learnt to make the most of every moment that I get. My illnesses teach me everyday to make memories from the simplest moments and I think that as I go through life they will continue to teach me more, so while I don’t want to be in pain and of course its hard, I wouldn’t ever give up the perspective having chronic illnesses have given me.

In addition to all of this, I believe that having a diverse population with a verity of experiences, abilities, needs and perspectives is good for society. Change happens when people from all walks of life are being represented and heard, without disabled people we would loose a huge range of experiences and thought processes. There are many inventions that wouldn’t exist without disabled people. Typewriters we originally designed by an Italian inventor who noticed that his friend was unable to hand-write letters because of her blindness. In 1608, Pellegrino Turri developed the first ever type-writer with metal arms and raised characters which allowed his blind friend to write. The inventor also invented carbon paper as a way to provide ink for the type writer. Other inventions originally developed for disabled people include Electric Toothbrushes, kitchen tools such as OXO good grips, speech to text recognition apps, fidget spinners, dropped curbs, bendy straws and audio books. This list is no where near exhaustive but provides good examples of products inspired by disabilities that have become integral parts of many peoples lives. Without the difficulties that come with disabilities we wouldn’t be driven to find solutions which would likely result in a vast decrease in innovation.

I also believe that having a diverse range of experiences in society helps to increase empathy and feelings of community which is really important for those wishing to experience and spread Gods love. It also takes a huge amount of faith to continue believing in God and his love while experiencing chronic and incurable illnesses, this type of faith is unending and cannot be rocked, meaning that those with chronic illnesses are a very valuable example of what faith can really do.