chronic illnesses – Page 2 – Chronic musician

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.

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.

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.

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.

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.