Nicola bennett

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.

The agony of waiting in chronic illness.

Life with chronic illnesses is full of ups and downs, there are so many difficult moments and experiences, so many days that don’t go to plan and things you wish you could change. One of the most difficult aspects for me is the constant waiting and being in the darl about what will happen next. At some point everyone with a chronic illness will experience the agony of waiting.

In my case, it feels like I started waiting when I was 12 years old and never really stopped. Waiting for appointments, tests, diagnoses, treatments, results, improvements and declines, it all takes its toll.

Most recently I spent two years waiting for a neurology appointment after my original neurologist prescribed a treatment and then didn’t contact me again. During the period of waiting I began to suffer an increase in headaches and began to suffer with chronic cluster headaches. By the time I finally got to speak to my new neurologist I had been suffering with chronic cluster headaches for around a year and was really in need of a break.

The outcome of that appointment was a course of steroids and an increase in my preventative treatment in the hopes of settling the headaches and preventing a return. After over a week of waiting for the steroid prescription I finally started treatment and got a much needed break. Unfortunately the headaches came back as soon as I stopped the steroids and the cycle of waiting started again. This time I was waiting to see if the headaches would settle or if the extra dose of preventative would kick in.

When the opposite happened, I decided to call my neurologists secretary and she offered to ask him to call me. More waiting ensued. Thankfully he called me the next day so I wasn’t waiting long, and we set up a plan.

Now, a week later I’m waiting for that plan to kick in to action. I am currently waiting to hear about getting oxygen delivered to take during attacks, I am told that it usually takes days for this to happen, but so far there’s no sign. A week may not seem like very long but these headaches are excruciating and every day without the oxygen is an extra day of suffering that isn’t necessary. I am hoping I will hear something soon and get some relief, but it there is just no way to know and there’s really nothing else I can do but wait.

While I’m waiting I know that the phone could ring at any time, so I have to keep my phone with me and on loud so that I don’t miss it, I have a million and one questions about the set up process, how much longer it might take, who to talk to if the oxygen isn’t delivered soon, where to store the oxygen, if the delivery person can even put the oxygen in my bedroom or if they’re allowed to carry it upstairs or not and no one seems to be able to answer me. The need to be constantly available means I can’t ever fully switch off because I need to be able to answer their questions at a moments notice and this is all while dealing with extreme pain, made all the more difficult by the knowledge that there is something that could help right now but for some reason I have to wait longer.

I am also waiting for a nerve block injection to hopefully give me a few weeks or even months headache free. Again, I have no idea how long the waiting list is, so it might be a few months before I get this treatment or it could be a matter of weeks. All I can do is try my best to deal with the pain in the mean time.

To someone outside the chronic illness community it might not sound like a big deal, but this isn’t an isolated situation. I would estimate that I spend around 200 days a year waiting for appointments, phone calls, tests, test results, procedures, prescriptions, medications to work and all sorts of other medical admin. It is so exhausting constantly being in waiting mode, never knowing what will happen next and I think its massively underestimated. The NHS is an amazing system, but communication with patients about how long things will take really needs to be improved. There needs to be less onus on the patient to always chase and ask for information, there needs to be more information about dealing with conditions while waiting for interventions and I think there is a real need for patients to have access to someone to talk to while waiting for the answers and treatments they so desperately need.

Things I am grateful for

When dealing with the day to day grind of chronic illnesses and disability its easy to become lost in how hard things are and loose sight of the good things. To try and balance this I make a real effort to remind myself of the things that I am grateful for on a regular basis.

Now, I’m not saying these things totally erase the hurt caused by living with chronic illnesses and their are definitely days where its really hard to see the good in life, but when I am able to step back and remember the things that make life better it really does help.

A loving and caring fiancé who accepts me as I am

The Image shows Nicola and her fiancé sat close together and smiling. Nicola has long brown hair with a fringe covering her forehead. She has blue eyes and is wearing pale red lipstick. She has a black and grey checked shirt dress. Gareth has dark brown hair and blue eyes, he is wearing glasses with a black frame. He is wearing a blue, brown, orange and white checked shirt with dark blue jeans. — Me and My fiancé

Being in a relationship while dealing with chronic illnesses can bring many challenges, many relationships end prematurely because of the pressure of dealing with the constant health challenges. I myself have had bad relationships as a young woman where my then boyfriend was unable to deal with the realities of my needs, so I know how difficult it can be. My fiancé now is a really loving, caring and empathetic person who makes my life better in every way. We face the obstacles together and we have found many ways of making memories while trapped in a hospital bed or sitting up talking in the middle of the night. I know that its not easy for him to see me in pain and unwell but I know he loves me and is willing to take the bad with the good.

Parents who support me

I know that a lot of parents will stop supporting their children when they become adults and expect them to deal with their problems alone. I am very grateful to still live with my parents and have a safe, warm and comfortable place to live. They have made a lot of adjustments and changes to meet my ever changing needs despite the burden that it places on them. The support and love they have given me throughout my life has made me the independent and confident person that I am now and I will never stop being grateful for that.

The NHS

For those outside the UK who may not know the NHS is the UKs national health service, it is free at the point of use and it is available to everyone no matter their background, income, living situation or what condition they have. In wales we have the added bonus of free prescriptions, so any medication that is prescribed by a medical professional is provided free of charge. This is actually life saving for people like me, without free prescriptions I would genuinely struggle to afford my medication including my asthma inhalers and medication for my cluster headaches. Thanks to the NHS I can go to A&E whenever I feel the need to without worrying about any cost implications or concerns about affording care. If we didn’t have the NHS I would probably be bankrupt and unable to afford anything other than a couple of medicines each month and probably no access to doctors or hospitals due to my inability to work.

Access to good pain relief.

While I know that good pain relief should be a right and not a luxury I am acutely aware of how blessed I am to have access to good pain relief. While no amount of pain relief will eradicate the type of pain associated with chronic illnesses, decent pain control can allow a chronic illness fighter to achieve a reasonable quality of life by making pain more bearable. Because of my pain relief I can do some basic tasks for myself such as washing my hair, looking after my guinea pigs, cooking a basic meal and going to doctors appointments. There are still days where these things aren’t achievable, but without pain relief I wouldn’t be able to do any of it. Without pain relief I would definitely be housebound and likely bed bound much of the time. I will always be grateful for compassionate doctors who care about my quality of life enough to issue pain relief, and I will continue to advocate for all chronic illness patients to receive the same level of care.

My Flute

My flute has been an absolute joy these past two and a half weeks and its a really good distraction from the daily stresses of dealing with constant health admin and chronic pain. Music has given me a way to express feelings and emotions that have been hidden away for a really long time. When its just me and my flute the pain disappears for a while and my soul is set free. It gives me a focus and an outlet in a way nothing else really can.

My mobility aids

When I first started to have difficulty walking I was extremely reluctant to use any mobility aids or anything that would identify me as disabled. I wasn’t ashamed of my disabilities but I was worried that using an aid would identify me as vulnerable and make me a target for judgement or mistreatment. Eventually it got to the point where the pain was just too much and it was n longer safe to keep going without a walking aid. i started small with a folding walking stick that I could put in my bag and only use on the worst days, then i moved onto crutches and finally got a wheelchair when it was clear the pain was beyond control and I needed help to make the world accessible to me. Despite my initial reservations I am now proud to be seen with my mobility aids. I no longer worry about what other people think or if they think I’m faking. My crutches and my wheelchair are extensions of my legs. They allow me to go out into the world, they stop my home from being a prison and they make me feel safe. I know that if I’m in my wheelchair and I get a cluster headache its ok, I’m totally safe. I know that if I have my crutches I can walk a short distance safely without falling or damaging my hip even further.

My Faith

I don’t talk very much about my faith because its very personal to me and I never want anyone to feel like i am preaching at them or trying to convert them, and also because I know that a lot of what I believe doesn’t align with many who call themselves religious. Maintaining faith while dealing with chronic illnesses is challenging, I get told all the time that if I pray hard enough or I’m a good enough person then God will heal me. I get told that I just have to ‘want to be healed’. This is not what I believe. I believe that we are all valuable, that we are all special and important and that we are all perfect in Gods image and that this includes disabled and chronically unwell people. I believe that I am the way I am supposed to be. Having chronic illnesses is extremely difficult, but there are so many things in my life that I probably wouldn’t have if I never got sick. I may not have met my fiancé or talked to him the way I did, I may not have had time to rediscover my love for the flute and the joy that brings me and in all honesty I may not have such a strong faith. There are moments in my journey where I knew God was with me, where I knew miracles were happening, where I felt peace in the midst of chaos and I am so grateful for all of those. I believe God has the power to heal if chosen, but I also believe that I don’t need to be healed because I’m not broken.

My Life

There are so many more things I could list here but I over all I am just so grateful for my life. Life with chronic illnesses and constant pain is really difficult and there is no getting away from that, but the flip side is that you learn to see the joy in the tiniest moments. The cups of coffee first thing in the morning, walking down a street hand in hand, sitting on the beach eating chips or sitting on the sofa laughing at stupid TV shows. I know what it’s like to worry that life may be shorter than you imagined and that really makes me grateful for each day.

Coping with needing a mobility aid as a young woman

When I first started dealing with chronic illnesses, there were no outer signs of anything being different about me. Most of my pain was in my upper joints and abdomen and apart from the occasional wrist brace, there was no sign of the war happening under my skin.

As my illnesses started to progress and my mobility deteriorated I began finding it difficult performing day to day tasks without help. To start with, I used a folding walking stick which could be put away in a bag when I didn’t need it. Making the decision to use a walking stick was difficult. I was still in my 20s, and thought walking sticks were for older people. I left it until I physically couldn’t manage any more and then gave in and bought the nicest looking one I could. It was bright blue with silver stripes and for a while it actually helped. It made me feel more stable and despite the stares from strangers the colours made it feel more like a fun accessory. After a while it became evident that it wasn’t a practical choice though, the handle was far too hard and was causing me pain in my hands and wrists. I gave in and bought a more practical stick, a red one with a soft gel handle, but it was still foldable. The folding nature meant I could decide to “hide” the stick if I wanted to, I could put it away and pretend I didn’t need it while I was sat on the bus or in a cafe, I didn’t have to deal with the stares or the questions, I appeared to be like everyone else, and for a while I needed that.

For me, starting to use mobility aids made my disabilities feel more real. It felt like I was admitting I was broken, telling the world I needed help in a way I had never done before. Being able to choose when to show my sticks gave me the impression of control, and I clung to it.

It wasn’t long though before my mobility deteriorated further and it became clear that walking sticks were no longer enough. I needed something I could put my full weight through, something that would take the pressure off both legs. It was time for crutches. My first pair were standard NHS crutches, silver with hard handles. I told myself they were temporary and for a while I only had to use them intermittently. I actually found I didn’t mind the crutches as much, people just assumed I had an injury, they didn’t stare or point, and they didn’t make unkind comments. When my mobility continued to decline and my crutches became more of an every day need I invested in a pair of blue crutches with soft handles, making them much easier and more comfortable to use for long periods of time.

The one thing I found difficult with crutches was that I couldn’t hide them, I couldn’t just put them in my bag “in case I need them later”, I had to use them the entire time I was out and at times I felt like a fraud. Even though I was in constant pain, and even though I almost fell a few times because my leg couldn’t take my weight, I didn’t feel “disabled enough” to use walking aids full time. I felt like I was being weak or over exaggerating. The truth was I just hadn’t come to terms with my level of need yet, I was still stuck in the “its not that bad” phase. I’ve always expected too much of myself, I always expected myself to cope with the pain without help. I realise now that I was being unfair to myself and to my body and that I probably should have started using mobility aids much sooner. Once I got comfortable using them, my crutches opened the world up to me, I could walk further, keep mobile on high pain days, protect myself from falls and maintain my independence. When I first started using mobility aids, I worried that it would make me appear vulnerable and that would lead to people taking advantage, but instead making my disability visible meant that other people became more aware of my needs, people didn’t judge me for using the front seats on the bus, people gave up spaces for me in cafes and trains, people held doors open and helped with bags. I got to see the best side of humanity, and it made me feel hope for the world.

Eventually , about a year or two before the pandemic, I began using wheelchairs on longer days out or on bad days. I usually borrowed them from the customer service office where ever I was, but when the pandemic happened most places stopped offering this service. I realised how much I had been relying on this service and after a few months of internal debate, I finally took the leap and got my own wheelchair. It’s nothing fancy and I will probably need to upgrade to an electric one in the future, but its made the world accessible when I would otherwise be trapped inside. I mainly use it for days out as walking more than a short distance is painful even with crutches, but I have also used it for medical appointments on really bad days. Without the wheelchair I would have had to cancel those appointments as I physically wouldn’t of been able to walk. I have had amazing experiences with my family that were only possible because of the wheelchair. I was apprehensive about getting it, I didn’t know if I was disabled enough, I didn’t know if people would judge me, I didn’t know if it would even be used, but now I view it as freedom. I didn’t want to admit how badly I needed it, I didn’t want to admit how bad my health was getting, but it opens a whole world that would other wise be impossible to get to. It keeps me safe, it gives me peace of mind, and I am so grateful that I made that leap.

How the Covid 19 pandemic has changed my life

The covid 19 pandemic changed everyone’s lives in so many ways, the worst of which was the loosing of loved ones coupled with not being able to mourn them the way that we would have wished. Many also lost jobs or were put on furlough, we all went through lockdowns and being told to stay at home and be separated from family and friends. For the vast majority, most of the impacts started to decrease as the number of infections and restrictions lowered and society began to open up and in a lot of places life has returned to how it was before the pandemic happened. Despite this, there is still a proportion of society still living with restrictions and potentially life long changes due to the pandemic.

Before the pandemic I was very independent, I was able to use public transport and could go to doctors appointments, hospital appointments, blood tests, scans and even pick up my prescriptions either by myself or with my fiancé. I was able to accept any appointment that I needed. I would only have to turn down appointments if they were in hard to get to locations or if they clashed with something else. Through out the pandemic I wasn’t able to use public transport because of the infection risk, this meant that I could only attend appointments if someone else could take me. I had to turn down appointments all the time. I couldn’t go get my prescription. I couldn’t even go get a coffee. I was trapped.

Although I am now fully vaccinated, I am still more at risk than the general population because my immune system doesn’t respond to vaccines the way a healthy persons would. I still have to wear a mask, I still can’t see my family the way I would like to, I can’t just go get a coffee without assessing all the risks.

Even if it was safe, there isn’t enough public transport. During the pandemic the local bus company dropped the number of buses on the route due to the drop in people catching them and to cope with driver absence. This meant that for a long time buses were only coming once every hour or two. When the restrictions started to lift, the buses were reinstated in some areas but not in mine. Recently they were supposed to but the buses back up to every half an hour but because of driver shortages buses were being pulled from the route at least four days a week with only 10-20 minutes warning.

As an example of the problems this creates, I used the bus for the first time in March last year, I was attending a doctors appointment and while I was in the surgery, the bus home was cancelled due to staffing issues. The next bus then didn’t show either. This meant i ended up being stuck outside the doctors for over an hour in freezing cold and wet weather with only my crutches for support. By this time I was unable to stand any longer so I went back to the surgery to wait for my father to pick me up from work. In total i was out of the house about 3 hours longer than I should have been and was exposed to Covid for a lot longer than necessary. This experience proved that the buses are still unreliable and so I am stuck using expensive taxis or grabbing lifts from my dad. While this isn’t all because of the pandemic, it’s certainly been a contributing factor.

I have always had to be careful around infections, but thanks to covid i will always have to look over my shoulder, I will always have to take more precautions than the average person and I will probably find that I’m always having to defend my decisions to wear masks and be selective about my environment and who I spend my time with. Due to being unable to leave the house for so long my mobility deteriorated much more rapidly than it would have if I had been able to keep active and keep attending my appointments. I will probably never get that mobility back. I missed saying goodbye to my nan because it was too risky for me to go to the funeral, i have missed my niece and nephews 18th birthdays and I may have irreparably lost my independence.

How playing the flute helps me cope with my chronic illnesses .

Since I began playing the flute in December 2020 it has had a profound effect on both my physical and mental wellbeing. I have always loved music but I never could have imagined the impact playing my own instrument would have .

I have always been someone who struggles having nothing to spend my physical and mental energy on. Before I became too unwell, I could do an 8 mile walk without breaking a sweat and would think nothing of walking to the nearest town. I did well in school and college despite worsening pain and took pride in working hard. When I had to give up university due to my Crohn’s disease and needing surgery it hit me really hard. When it later became apparent that I wouldn’t be able to work or complete my studies that hit me even harder and I began to struggle with feeling like I wasn’t achieving anything,

When the pandemic hit and I had to begin shielding that feeling intensified. All of a sudden I couldn’t do anything for myself, I couldn’t go to the doctors unless someone took me, I couldn’t go get a coffee or pick up my own prescription and it really intensified the feelings of helplessness and being trapped at home.

In December 2020 my fiancé surprised me with a beautiful Yamaha flute for my birthday . He knew that I had lessons as a child and that I had always wanted a flute of my own. From the moment I played my first note I knew that instrument would change my life.

In the beginning it was just nice to have something to do. I would spend around half an hour a day practising and learning each note and then I would need to rest. It took a lot of energy to sustain the notes and hold the flute up. Over time I noticed I was building strength and starting to be able to hold the notes for longer and hold the flute up for a few minutes at a time. Eventually I was able to start practising for longer and it became a staple part of my day.

It was at this point I started to notice how much happier I was feeling. I was less restless, I was feeling more fulfilled and I felt like my brain was being exercised more than it had in years. The flute had given me something to focus on, something I didn’t know I needed until that moment.

Since then it has become so much more than an instrument, it gives me an outlet for my emotions, it gives me back the voice i lost years ago. Playing the flute is one of the few things I actually do just for enjoyment rather than because I feel like I have to. The feeling of freedom when I play is such a huge release, for the time that I play I forget about all the stress in my life truly relax. Additionally I feel like I’m achieving something for the first time in years, every time I learn a new concerto or perfect the next technique it gives me a huge mental boost.

The nicest thing is that playing the flute has actually given me physical benefits too, its helping with my asthma as its working out my lungs and keeping them clear and its strengthening my shoulders, wrists, hands and fingers. It is also improving the dexterity in my hands and fingers by keeping them moving and stretching, and its essentially acting as physiotherapy by stretching muscles that I don’t really use in day to day life.

A cover of Think of Me from Phantom Of the Opera

If you would like to see more of my flute playing journey please visit my instagram @thejoyofflute or TikTok at the same handle.

My diagnoses and what they mean for me

One of my main aims here is to increase awareness of chronic and invisible illnesses and how they can impact people on a day to day basis. I thought a good start would be to share my actual diagnoses and how they impact me

Crohn’s disease

Crohns disease is an inflammatory bowel disease that is thought to be linked to the immune system. The exact cause is unknown but it is thought that several things could be at play including a problem in the immune system, genes and abnormal balance of gut bacteria. There is no evidence that a specific diet can cause Crohn’s disease.

There is no cure for Crohn’s disease so treatment aims to prevent damage to the digestive tract and control symptoms.

Currently I am on a biological treatment called vedolizumab which targets the specific integrin thought to cause damage in Crohns. Blocking this integrin results in an anti inflammatory effect which is restricted to the gut, making vedolizumab safer than other biologic therapies.

Vedolizumab works well for me and has enabled me to gain and maintain weight and stopped recurrent hospital stays. Unfortunately I have never gone into remission (no clinical signs of disease and no symptoms) and still experience daily pain and nausea. Due to the immune suppressive effect of the vedolizumab I am also at increased risk of infections which means I have to be extremely careful and spent the entire pandemic at home trying to avoid Covid.

Coeliac disease

Coeliac disease is an auto immune disease where the immune system attacks the digestive system when gluten is eaten.

The symptoms of coeliac can vary but for me the main sign was severe iron deficiency anemia, in fact, before diagnosis it was my only real symptom. The treatment for coeliac disease is a totally gluten free diet which has to be strictly maintained for life.

The main difficulty for me is finding gluten free food that isn’t too high in fibre as high fibre foods cause my Crohn’s symptoms to worsen. Thankfully its been a long time since I last accidentally ingested gluten but when it does happen my symptoms now include nausea, vomiting, severe stomach cramps, swelling of the lips and tongue and flushing.

Untreated coeliac disease can result in inability to absorb nutrients from foods leading to malnutrition and the prolonged damage to the intestine increases the risks of some types of cancer. Prolonged malnutrition can also lease to infertility in women.

Cluster headaches

Cluster headaches are extremely intense and excruciatingly painful headaches that occur in groups or “clusters”. They usually last between 3 minutes and 4 hours and come back multiple times during 24 hours. For most sufferers a cluster will involve multiple headaches every day for a few weeks or months followed by a period of remission where they are pain free. These are known as episodic cluster headaches.

I suffer from chronic cluster headaches, this means that my cluster headaches occur every day with no period of remission. Cluster headaches have a profound impact on my day to day life and often prevent me from doing the things others take for granted. Even something as simple as sleeping can make my headaches worse so every day is a balancing act.

At the moment I am waiting for oxygen to be installed in my home to help treat each headache and I have been placed on the waiting list for a greater optical nerve block which may provide longer term relief from the headaches.

Seronegative inflammatory arthritis

Seronegative inflammatory arthritis is a type of arthritis where there is inflammation and damage to the joints but no elevated inflammatory markers in the blood. It is linked to the immune system like rheumatoid but doesn’t cause the potential organ damage that rheumatoid can.

Because Seronegative inflammatory arthritis is systemic it can affect many joints at once. Out of all my illnesses arthritis is probably the most visible as it causes me to need crutches or a wheel chair much of the time. I have severe pain in my hips and struggle to walk even short distances on bad days. My arthritis also causes pain in my shoulders, wrists, fingers, knees and ankles making the most simple tasks incredibly difficult.

Osteopenia

Osteopenia is a condition where the bones have started to thin and become weaker and easier to break. It is often referred to as the stage before osteoporosis and is common in people who have conditions like crohns and coeliac disease that interfere with the absorption of nutrients like calcium. It is also common in people who have had repeated courses of steroids as these can contribute to the thinning of bones over time .

At the moment there is no suitable treatment for me as the main treatments for osteopenia are contraindicated due to my other medical history. This means that unfortunately there is no real way of stopping it from progressing. I am due another bone scan this year and expect that it will show further deterioration. Eventually I will develop osteoporosis and will be at risk for fractures.

Inappropriate sinus tachycardia

Inappropriate Sinus Tachycardia is a condition where the heart beats faster than normal without an apparent reason (such as infection, exercise or blood loss). The heart remains in sinus rhythm but beats anywhere between 100-150 bpm.

In many cases this is not dangerous and simply requires careful monitoring to ensure the heart remains in good condition,

Asthma

Asthma is a common lung condition that can cause breathing problems. It is caused by inflammation of the tubes that carry air in and out of the lungs.
The main symptoms include shortness of breath and wheezing. Asthma is often triggered by things like smoking, chemicals and allergies.

I was diagnosed with asthma at the age of 18 but we believe I have had it since childhood. I currently use a steroid inhaler every day and a ventolin inhaler before exertion and when symptoms occur. Most of the time my asthma is well controlled but I still suffer some breathlessness after physical activity or when I am battling a cold.

Hypercalcemia

One of my less troublesome conditions is hypercalcemia which is high calcium in the blood. There are many potential causes for this but in my case it is caused by a genetic condition where my body doesn’t recognise when there is too much calcium already in my blood stream so it continues to produce the hormone that tells the body to produce more.

In my case it is harmless, my body is used to the elevated levels and therefore I don’t get any symptoms. The only real impact is that I have to be careful about introducing excess calcium such as calcium supplements and this is one of the reasons it is hard to treat the osteopenia.

Eczema

Eczema is a common skin condition that causes redness, itching and cracking to the skin which becomes sore and may bleed. Eczema is more common in people with a personal or family history of asthma, allergies or hay fever.

Treating eczema includes applying moisturisers to prevent the skin from drying out and steroid creams to treat the inflammation during flare ups. As eczema can create breaks in the skin, infections can occur which need to be treated with anti-biotics

My eczema is mainly on my face and in my hair and regularly flares up when another of my conditions is flaring. Due to the vedolizumab for my Crohn’s disease suppressing my immune system I am more at risk for infections so its very important that I am proactive in my skin care.

What not to say to a chronic illness patient

When talking to someone who is sick and in pain it’s only natural to want to comfort them and lighten their burden but sometimes it can be hard to know the best thing to say. Many of the things you would say to someone with a temporary illness or injury aren’t helpful to someone with a longer term illness or disability and it may even make them uncomfortable. As someone with many chronic illnesses who has dealt with chronic pain since a young age I regularly come across people who genuinely want to make me feel supported and cared for, but end up saying things that are unhelpful and even hurtful. With this in mind I want to share some of the things that are best avoided and where applicable suggest alternatives.

1 – “ Get well soon “
The reality of chronic illnesses is that they don’t go away, people with a chronic condition will have that condition for the remainder of their lives and will likely have some level of symptoms on a daily basis.
While well meaning, telling someone to get well soon when their illness is permanent can come across as though you don’t understand the nature of their condition or even as though you don’t believe that they are really that sick.
Where appropriate it may be better to say something like “I hope you get some respite from your symptoms” or “ is there anything I could do to help you cope with the symptoms “

2 “You don’t look sick”
Many chronic illnesses and disabilities are invisible, this means that it is difficult or even impossible to tell someone is sick or disabled just from looking at them. Although you might be hoping to boost their spirits, telling someone they don’t look sick may make them feel like you don’t believe them. Many disabled or chronically unwell people have experienced mistreatment such as being sworn at, denied access to an accessibility need or accused of lying all on the basis of how they look. If someone tells you they have a disability or illness or that they have an access need please don’t question them just because they look “ok”. If you want to give them a compliment it’s much better to make it unrelated to their illnesses such as “I like the way you’ve done your hair” etc.

3 “ You just need to….”
When someone is unwell and struggling its natural to want to fix it and make things easier for them. The problem with chronic illnesses is that very often there isn’t anything you can do. This doesn’t stop people from trying and most chronic illness sufferers have heard a never ending list of “ you just need to… “, this can include exercise, sleep, eating, drinking, medication etc.. while well meaning these things are unlikely to help and constantly needing to explain this is exhausting. Personally I would much rather have someone ask me if there’s anything they can do that would make my day easier such as feeding my animals for me or helping me dry my hair.

4 “ Someone I know has the same illness as you and they can work/walk/cope without meds /etc”
The symptoms and impacts of chronic illnesses can often be very different from one person to another. For example, one person with Crohn’s disease may be able to eat whatever they like, work a full time job and still have the energy to go out and have fun on the weekends. Another person with Crohns may be unable to eat and need to be tube fed or have a full liquid diet, or they may be unable to work due to the level of pain or sickness they experience and they may be too fatigued to perform basic tasks such as cooking a meal so going out for fun is out of the question. For this reason, comparisons are really unhelpful in chronic illnesses and may make someone feel judged or misunderstood,

5 “ Don’t eat that.. “ Or “ You should eat more”
Many chronic illnesses can cause issues with eating, the person may be experiencing symptoms that make eating difficult such as nausea and stomach pain, or they may have a hard time making healthy meals due to fatigue or joint pain, or they may be on a restrictive diet to help treat their illness. Growing up I was seriously underweight and constantly dealt with people telling me to eat more or judging the type of food I was eating. When I got diagnosed with coeliac disease and switched to a gluten free diet people would comment on how the food looked or smelled or tell me to eat a “little bit “ of something that contained gluten because they thought I was restricting too much. This advise was dangerous and made me feel judged and alone. Unless someone is eating something they’re allergic to, its better not to make comments about their diet as you may not know why they are eating a certain way. Instead, offer to cook for them and allow them to choose what they would like, if someone is too sick to cook they may appreciate a good meal from someone who can cook. Don’t pressure them though, sometimes the prospect of eating is just too painful.

6 “ Just be positive”

While a positive attitude and approach to life with chronic illnesses can help some people to cope with the difficulties of living with health issues, it is not possible or healthy for people to be positive all of the time. Living with illness or disability is complicated and often involves difficult decisions and long nights. It’s natural for anyone to have hard days or days where they just feel fed up and that’s even more true when going through hard times. If someone tells you they’re sick or having a bad day, its much better to listen to how they feel and try to validate their feelings by acknowledging the challenges they face.

7 “Stop being lazy”

Many people with chronic illnesses suffer with fatigue, this is extreme tiredness beyond normal levels and it can’t be fixed by a good nights sleep. Fatigue makes even simple tasks extremely difficult as it feels like you’re wading through water with every movement. Couple this with other common symptoms like nausea or pain and its easy to see how someone with chronic illnesses can find even the most basic chores can become impossible never mind holding down a job or keeping up with constant housework. If you see someone resting please don’t assume they’re being lazy, they may be fighting an internal battle that you just can’t imagine.

8 “ There’s no such thing as a permanent illness”

It might seem hard to believe but this is something I hear at least once a week. I understand it can be hard to accept that it’s possible to get sick one day and then never get better but unfortunately i happens all the time and often with very little warning. If someone tells you that their illness is permanent or that they wont get better, please treat them with kindness and acceptance. Many chronic illness fighters have to advocate for themselves every day when trying to get the correct treatments or getting their access needs met. The last thing they need is to feel like their family or friends don’t believe them.

9 “There are others worse off than you”

This is something I encounter all too often. While its good to be grateful for the good things in life and to acknowledge the blessings and privileges we enjoy, its also totally fine to be upset, mad, scared etc about the things that aren’t going well or the things we can no longer do. When someone is confiding in you about a difficult time in their lives or explaining how their illnesses or disabilities impact them, telling them “there are others worse off” can make them feel dismissed and as though they are being judged for how they feel. I always explain it like this – if you’re in A&E with a broken leg, and there is someone next to you with two broken legs, does that mean that your single broken leg doesn’t hurt? Pain is relative and it is unique to the person experiencing it. I am in constant excruciating pain, I have to inject myself with chemicals and it really hurts and a simple virus could end my life. All of that stuff is scary and difficult and it is both totally normal and completely valid for me to express that difficulty and having those feelings validated by the people who love me makes me feel much less alone.

10 Just stop thinking about it / Talking about it

Countless people have told me to stop thinking about my illness, going as far as telling me to pretend it doesn’t exist. While I understand that the concept of forgetting about your illnesses for a while may seem nice, its not always that easy. Many people with chronic illnesses have constant symptoms such as pain, nausea or fatigue which demand attention and it can be impossible to just ignore them. For others, ignoring their illnesses may actually be dangerous, they may have symptoms that need careful monitoring or they may need to be vigilant about what they eat and how it is prepared, or they may need to take regular treatments. Even if its not impossible or dangerous,telling someone to forget their illnesses or stop talking about their symptoms sends the message that you aren’t really there for them. It makes it clear that you aren’t interested in their difficulties and may not be supportive of their physical or emotional needs. Many people with chronic illnesses have experienced being shunned by society or accused of attention seeking, even of making things up. There are few places people with chronic illnesses can be truly open about their symptoms, so please don’t make them feel like they have to hide it when they’re with you.

11 Your spouse must be amazing to stay with you

It’s never ok to make assumptions about someone’s relationship no matter what the circumstances, some of us are blessed enough to have other halves who are kind, compassionate and treat us with love and respect, but that isn’t always the case. Many people with chronic illnesses have stressful relationships with their partners and even their wider family. It’s not uncommon for chronic illnesses to cause arguments within a relationship even when the people in it love each other dearly. Apart from that, disabled and chronically unwell people have just as much right to be loved as everyone else and we bring a lot to our relationships, relationships take hard work and dedication from both parties and cannot survive without give and take on both sides. I always say I’m blessed to have my fiance, he’s amazing, he’s kind, honest, respectful, compassionate, considerate and takes excellent care of me, but I know he feels just as blessed to have me, and that’s just how relationships should be.

Who I am

Hello, welcome to my world

My name is nicola, I’m 30 years old and I live in wales in the uk. I currently live with my parents and I’m engaged to Gareth who I have been with for nearly 11 years. I am a huge music lover who is also obsessed with animals and art. I play the flute and have recently started the piccolo. I also happen to be living with a number of long term health issues with varying degrees of severity.

Throughout my life I have fought to be seen as more than just my illnesses, it’s very easy for people to start to see the mobility aids, medications, hospital visits and forget about the person behind it all . While I will be sharing my experiences of being chronically unwell and disabled, I want this blog to be a demonstration of how much more there is to life with disabilities.

I am to share my joy of music and give a glimpse of how it has improv my quality of life and even improved my physical well being on a day to day basis. I will also share art, activities and coping strategies for the really hard moments. I hope to create an environment where everyone feels welcome and valued, and where thoughtful questions can be answered with compassion and kindness. If this sounds like somewhere you’d enjoy please feel free to stick around and enjoy the view.