mental health – Chronic musician

What I wish I knew when I first became unwell

They say hindsight is a wonderful thing, and this definitely something I think applies to life with chronic illnesses, so I thought I would talk about some of the things I wish I had known when I first became unwell.

1 – Doctors can be wrong

Yes, you read that correctly, doctors can indeed be wrong! Believe it or not, doctors are just human like the rest of us, so they can definitely make mistakes and be wrong about things, including diagnoses. There are many occasions looking back where I wish that I had spoken up and said “no, that doesn’t feel/sound right” and it would have saved a lot of pain and unnecessary testing. I am much better with this these days and always make sure I understand what a doctor is asking me to do and WHY they want me to do it. Taking this approach has saved me from some very serious complications in the past and is something I definitely recommend.

2 – Clear tests doesn’t mean nothing is wrong

I spent a long time thinking my symptoms weren’t serious or weren’t worth “bothering” the doctors with because blood tests and X-rays were coming back clear. No matter how bad the pain got, the tests would be normal and I would be sent away with painkillers and told things would sort themselves out. After suffering for a long time I finally got the courage to ask for an MRI, which gave us the first real evidence that there was something more serious going on. Even now, I don’t have any blood test results that definitively prove my inflammatory arthritis, but I have a diagnosis, because my symptoms were not going away and I respond well to steroids. Tests can be useful, they can give an indication of our overall well being, but they are not the best all and end all. If you had tests come back clear despite ongoing symptoms, keep fighting, don’t be put off until you have an answer you are satisfied with.

3 It’s ok to say no to a doctor

Growing up we are taught to respect doctors, they are authority figures, we go to them for advice and as such we should listen to them and take their advice, but, as a long term and frequent patient I have had to learn to be able to say no to them. One key example is when I went to see an endocrinologist for advice about my thinning bones and high calcium. He prescribed me a medication that I wasn’t totally comfortable taking, so instead of just taking it , I went to someone I trusted, my IBD nurse and asked her advice. At the time I was undergoing brace treatment ready for surgery to correct the position of my jaw, being aware of this my IBD nurse advised me to speak to my orthodontist before taking any of the medication. When I spoke to the orthodontist she told me that if I took even one of those tablets they would have had to take my braces off there and then and cancelled my surgery. It turns out the medication was known to cause necrosis in the jaw bone if the jaw was moved or manipulated in any way and there was a decent chance of it happening to me if we continued with treatment. There was no blood test able to detect this medication in the blood, and the half life (amount of time it stays in the body) was unknown, so they wouldn’t be able to tell if the medication was still in my blood stream, meaning that they wouldn’t have even been able to do the surgery at a later date, it would have been cancelled completely. Me saying no to that endocrinologist saved my jaw and possibly my life. If a doctor ever tells you to do something that you know is incorrect, or that you just have a bad feeling about it’s totally OK to just say no and/ or request an opinion from another health care provider.

4 It’s OK not to be OK

For a long time I would bottle things up and if someone asked how I was I would always say I was fine. My logic was that people didn’t need me to keep saying I was sick, that it would just be complaining and that they didn’t need to hear that. For a long time I thought “They know I’m sick, they know I won’t get better, no need to keep saying I’m sick”. Unfortunately that meant that I was keeping my suffering to myself, I was saying I was OK when I really deeply wasn’t, I didn’t want to burden people, but in trying to protect everyone else I was making myself suffer more than necessary. You don’t have to dwell on your illness if you don’t want to, and it doesn’t have to come up in every conversation if you would rather it didn’t, but keeping it to yourself may not be the best thing for you. If you have family and/or friends that you can trust then let them in, let them know you’re not ok, even if that’s just telling them how much pain you’re in, its ok if you aren’t OK and you shouldn’t have to hide it from the people who are supposed to care about you.

5 – Its ok to put your needs first

This is something I find particularly tough. I have always been a listener, an agony aunt if you like, I have always wanted to help people as much as I can and would often put my own needs aside in order to be there for others. One of the things I hate most about my chronic illnesses is that I know it causes other people pain and stress, I know its hard for people who love me to see me struggle, I know its stressful for them to have to help me with things that most people would be able to do for themselves. I would often down play how much I struggled, or push myself beyond my means to try to help someone with a difficult situation and it took me a long time to realise that I was actually harming both myself and them by putting myself last. I have learnt over time that sometimes I have to be a little bit selfish and take care of my own needs, both emotionally and physically, before I can be a good friend or confidant to others. I have learnt that even simple things, like putting my phone down by a certain time each night, keeping the do not disturb turned on during bad days, having messages from new people on my chronic illness account go to requests instead of straight to my inbox all help. I have learnt to say “no”. I have learnt to say ” I cant deal with this right now, so I will talk with you later” . All these things seem small, but they are ways of enforcing healthy boundaries and ensuring I rest when I need to, I eat when I need to and I limit the amount of stress on particularly difficult days. There are many ways in which you can prioritise your own needs, so whatever works for you is OK, don’t be afraid to put those boundaries in place and stick to them.

6 – Embrace the things that bring you joy, no matter how small

This may seem like an obvious one, but I think its something we could all use a reminder of now and again. When dealing with the constant pain and stress of chronic illnesses and disabilities, life can become an endless routine of medications, appointments, managing hydration and nutrition and endless phone calls. Being chronically ill really is a full time job, and it’s one we don’t get a break from. We cant clock off at 5 on a Friday and forget about it until 9 am Monday. We can’t hire a baby sitter or ask someone else to take over for a few hours. With this in mind, its important that we take any opportunity for even a tiny piece of joy, no matter what that is. Want a chocolate chip cookie? Then have one! Love reading? Take an hour a day and read whatever your heart desires. Love music? Listen to a song every morning before you get out of bed or while you’re doing your treatments. For me, I love being creative, I play the flute, I sketch and paint and I have just started to work on my first ever patchwork quilt. I try to make sure that the majority of days I get to do at least one thing related to one of these things, whether that’s listening to some flute music, getting my flute out and playing or just watching a 10 minute video on a water colour technique that I want to try one day. It helps me feel human, it reminds me that I deserve joy and happiness and it gives me at least a small part of my day that isn’t dedicated to self advocacy, medications or managing symptoms and that’s really powerful.

7 – It’s ok not to use unsolicited advice

This is one I struggled with a lot in the early days. Unsolicited advice is something that everyone with a chronic illness has come across in one way or another. It’s usually well meaning and often comes from people who actually think they are being helpful, so it can be hard to say no to. In some cases, ignoring unsolicited advice can even make us feel guilty, we know the person was just trying to help so we feel bad when we don’t do what they say. The truth is though that usually we have already received good advice from people who are actually qualified to give it – doctors and other patients with similar experiences. Advice from family and friends can of course be helpful if they truly understand our health needs and know something that we don’t or have experiences that allow them to see things in a similar way but when advice is being given without being asked for its a different story. If you aren’t asking for advice then the chances are you already know what you need to do, or you know that at this point there isn’t anything you can do to make the situation better. People often don’t like being told this, so even if you have explained that you’re doing all you can, many will still try and offer advice, and its totally OK to not take it, it’s even ok to tell the person that you don’t need advice right now, and would appreciate a listening ear or some practical help instead where appropriate.

8 – You will make mistakes when it comes to your health and that’s OK

No one is perfect. We all make mistakes sometimes, whether that’s at school, work or home, and health care is no different. It might be something like accidentally ingesting a food that you are allergic to even though you have taken all the precautions, or missing a dose of a medication or forgetting to go to an appointment. Things happen. We are not robots. I have been dealing with chronic illnesses and chronic pain for 19 years. I have had coeliac disease since I was 14. I have definitely forgotten to take a dose of meds or two in that time. I have also eaten food that contained gluten, I have even been served a food that contained gluten by a family member. I would never do these things on purpose, and each time a mistake happens I do everything in my power to learn from it and make sure that specific mistake is not repeated, but I don’t spend weeks or months berating myself for it either. I am honest with my family and my medical teams when something happens, and I do everything they advise to correct the mistake, but I don’t hold a grudge against myself or whoever caused the mistake. I acknowledge it, I take steps to prevent a repeat and I move on. No one can be 100% perfect 100% of the time and that’s OK.

9 – Its not your job to inspire people

Something I come across a lot online is the desire of able-bodied/ healthy people to be inspired by disabled people. People constantly tell me I’m amazing for simply existing and honestly its tiring. I don’t want to be put on a pedestal for simply getting out of bed and going to the shops, or for having a shower and getting dressed. A common one for me is being stared at and receiving sympathetic and knowing smiles when going about my day with my rollator or my wheelchair, this is especially true if I happen to have my oxygen on at the same time. People will often bring attention to the mobility aid, making jokes or comments related to it, even asking me “what’s wrong” or “why I need it”. All I want to do is go about my day without any extra fan fare or attention, I just want to exist in society like everyone else. I want to get to my doctors appointment without feeling like a tourist attraction or go to a cafe and have a cup of tea without it feeling like the event of the year. I know the majority of people are not trying to make me uncomfortable and are genuinely happy or curious to see someone they perceive as different, but I am just a 30 something year old woman that want’s to live my life and enjoy the small amount of freedom I still have. It is not my job to be inspiring or make other people feel better when I’m just trying to buy some milk.

10 – Quality of life is just as important as quantity

Having a long life is something many of us want and when diagnosed with serious illnesses it’s totally normal to worry about the impact that may have on the longevity of our lives, but there isn’t much importance placed on the quality of that life. When I was first diagnosed, the focus was mostly on avoiding emergencies such as a perforated bowel, keeping my body ticking over until we could get to my planned surgery and trying to avoid any life threatening complications. There was very little mention or focus on quality of life. Aside from some family members, no one really asked me about my pain levels or how they were impacting my ability to function, no one wanted to hear about the long sleepless nights spent wondering what would happen next, no one wanted to listen to me complain about how much of a chore eating had become, they didn’t want to hear about how horrible the steroids were making me feel. The doctors just wanted to keep me safe. The priority was trying to avoid serious complications and everything else was secondary. In the beginning this made sense, the doctors I was under at the time thought that once i had my surgery, i would be pain free and able to lead a normal life for at least a few years, so to them the pain was temporary and as long as I got through the surgery and out the other side things would be golden. What no one expected or prepared for was the idea that the surgery wouldn’t fix everything, the idea that the crohns would come back relatively quickly or that I would end up diagnosed with several other conditions. It took a long time to realise that I was going to be sick/in pain for the majority of my time. Once this realisation came, I realised that I would need ways to handle my symptoms at least enough to give me some sort of quality of life. One of my biggest and most hated symptoms is nausea, it always surprises people when I say that my anti sickness meds are the ones I would hate to be without the most, the nausea is all consuming, it creeps into every fibre of my being and makes it hard to do anything other than lay in bed all day, Getting it under control took a lot of trial and error, I take two powerful anti sickness medicines every day without fail, and I cannot miss them. Controlling my nausea means I can eat, drink, sleep, talk and spend time around other people without being constantly paranoid about loosing my lunch. The other big thing is of course pain control. I will likely never be pain free, but having decent pain relief has kept me out of hospital many times, it means i can manage flare ups at home, I can eat, I can do light exercise. I can even do fun things like go to the cinema or the occasional gig. Controlling the underlying illnesses may keep me alive, but controlling the symptoms allows me to live, and that is SO important and precious, and when it comes down to it, I would never be able to live without quality of life.

Why sentences that start with “at least” are generally unhelpful

We’ve all been there, someone is having a difficult time or they tell you about something hard in their lives and you really want to comfort them. It can be hard to know what to say when someone is going through a hard time, but sentences that start with “at least” are often the opposite of comforting apart from in a few very specific contexts.

As someone who has been dealing with chronic illnesses and pain for a long time and someone who has been very open with my journey since adulthood, I have heard a lot of “at least”. They have included

At least its not “insert illness perceived to be worse”
At least you have a partner
At least you have money (I don’t but that’s not the point)
At least you get to stay home all the time
At least you don’t have to work
At least you are young
At least you can do X activity

A lot of the time people mean well when they say these things, but sometimes people genuinely think you’re lucky because you don’t “have” to work and they do, or they think that your condition isn’t as bad as theirs, or that there are other conditions worse than what you have.

I am going to try to debunk some of these and explain why even if they were true, they still wouldn’t be helpful

At least its not “insert illness perceived to be worse”

There are a few reasons this isn’t a great thing to say, for a start its really dismissive, illness, pain and suffering are all relative, someone could be having the worst pain of their lives, it doesn’t matter if you think you have been through worse, if its the hardest thing they have been through, then its the hardest thing for them and that is valid. Even if they have been through worse in the past, they are allowed to find “easier” things just as tough to deal with.

Secondly, illnesses and suffering isn’t a competition, everyone is allowed to struggle , everyone has their own battles and they are entitled to support, no matter what other people are dealing with.

Thirdly, diagnosis alone does not dictate how much pain someone is in or how sick they are, or what other circumstances they have in their lives that could make things difficult. There are people out there with diagnoses that are perceived to be “worse” than mine who are actually much healthier overall and have a better quality of life. I also know of people who have diagnoses which are perceived to be less serious than mine who happen to be much sicker than me. The point is, the name of the illness alone does not tell us how sick someone is. Regardless, diagnosis does not dictate how much someone is going to suffer, it doesn’t tell people how much pain you are in, how much you can eat, how much medication you need to function, how difficult things are in their home lives, how difficult accessing care is or anything else that could impact their situation.

At least you have a partner

This is something I get a lot, usually from healthy people who just happen to be single. Don’t get me wrong, I absolutely love my fiance and I am very blessed to have someone in my life who loves me and who actually means the vows “In sickness and in health”.

However, the people who say this to me know nothing about my relationship or if its healthy or not, they just think I am lucky to be in a relationship and some of them even behave as if being in a relationship somehow makes being sick OK or not as life changing.

I am very, very blessed that I have someone who is supportive, kind and compassionate, but, maintaining a relationship when you’re really sick isn’t easy. Relationships in general need a lot of patience, understanding and hard work from both sides. When one of you is severely unwell, you both have to work even harder to keep communication open, to not get ratty with each other when you’re both running on no sleep. It is hard for me sometimes not to get short tempered when my pain is through the roof and I have not slept more than an hour or two for weeks at a time. It’s also very hard for my partner, he has to always be in reach of his phone incase I have an emergency, he keeps a medication list on his phone incase I ever end up in hospital unconscious and he needs to communicate it to doctors, and there are things other couples do every day that we are just unable to do together because of my limitations. The likelihood is that my health will get worse as i get older, and I am already well on my way to getting osteoporosis. He will watch me getting sicker the older we get, loosing more and more function and independence and that is going to be incredibly difficult for him.

To be brutally honest I also find some things more difficult, as when i am thinking about my illnesses I also have to think about him, and our future as a couple, rather than just about my illnesses/me. I have no problem with this at all, I adore my fiance and I would walk through fire pits to be with him. The compromises and thought needed to maintain the relationship are absolutely worth it and I will never begrudge that. I just think it’s something people underestimate, being in a relationship is amazing most of the time, but it is a lot of hard work.

At least you have money

This comment usually comes from people who live in less advantaged countries, who see that I am from the UK and automatically assume that I have lots of money and that this can fix everything.

There are two major things here – firstly I actually have no money, without my mother I would be homeless, I have no income and no way of getting one. Government help for people who are disabled and/or chronically unwell is very hard to access, and it’s very little money. I have access to one benefit, and it’s barely enough to buy the extra things that come with my conditions – gluten free food, skin care for my eczema, a comfortable pair of crutches, splints and other things that generally make my life more comfortable.

Secondly, even people who do have money can’t buy health, you might be able to buy a nicer wheelchair or a more accessible home, you might be able to pay for carers or a big car and a driver that can take you anywhere, but you can’t buy a cure that doesn’t exist yet, you can’t buy pain relief that takes away all pain, you can’t cure your paralysis with money or make things magically accessible in the outside world. Having money may make some things easier, like making sure you get enough food, making sure you have heating and food, but it doesn’t actually make being sick better or easier, and its not ok to tell someone with a serious illness that they should just be glad they have more money than you.

At least you get to stay home all the time / at least you don’t have to work

i have tied these together because they often go hand in hand. People who work/go to school/go out a lot often dream of being bale to just sit around doing nothing. This is because when you have a busy life and are always on the go, having a few days of just doing what you want, spending the day on the sofa or watching movies or whatever it may be, and people think that if you don’t work because of illnesses it’s the same thing. Unfortunately it really isn’t. When you have time off from school or work and you’re feeling well, you can do anything you want provided it is in your budget, you can have fun, you can see your friends and family, and if you have a day in bed or on the sofa its because you choose to. When you are chronically ill and sick enough to be unable to work, it also means you are often unable to do most of the things other people take for granted, people who are chronically unwell often get tired much easier, we are often in pain, some of us find eating and drinking harder and the majority have lots of health related admin and tasks to do. I personally have to make frequent phone calls to medical and admin staff, monitor and administer multiple different types of medications including injections, maintain my hydration the best I can and try to eat enough to keep my weight at a safe amount.

Then there’s the issue of finance, because I can’t work I have very little money, the money I do have goes on essentials that are mainly health related, and I can’t afford to do lots of fun activities. I also don’t have access to a car, and no one who is close enough to me to care has a car big enough for my wheelchair, so I am restricted to activities that I can get to by bus. The buses here only go to 2 locations and are every hour, so they are really inaccessible to someone with difficulty standing or walking for long periods as if you miss one you have an hour wait for the next. I am also at very high risk for infections due to the medications that keep me alive, so that makes it really dangerous for me to do certain activities. For the past 4 years my home has been the only safe place for me, but at times it has been more of a prison as I am quite literally trapped here.

At least you are young

I have to be honest, I don’t really know what people are getting at with this one, I can only think that they mean I am young and have the rest of my life to live? But in reality, being young does not make my situation any easier. I got sick at a really young age, I have been unable to have any sort of career, my social life is non existent, my friends have all disappeared and stopped caring, and I have no memory of a life without pain. I literally don’t know what it is like not to be in pain. i also know that even if my underlying conditions were all eventually cured, irreversible damage has been done to my body, I will never be totally well, and that’s hard to deal with when you’re only in your 20s and 30s. It also means that people tend not to believe me when I try to tell them what I have been through, people think i am too young to be as sick as I am or to have experienced everything that I have, even doctors don’t always take me seriously and many think that I don’t understand what’s happening in my own body.

At least you can do X activity

This is another one, people think that because I can do certain activities that I am fine. For example, I play the flute, I love it, its one of my favourite things, so people think that means my illnesses don’t bother me, or that I shouldn’t be upset about the things I can’t do.

I don’t like to focus on it, but the hard truth is that the list of things I can’t do is a lot, lot longer than the list of things that I can do, and the list of things I can’t do is getting longer all the time. Even the things I can do are dependent on how i feel that day, that hour, that minute, some days I can’t do anything other than curl up on the sofa and try to stay hydrated. There is also an element of just stubbornness a lot of the time, sometimes I have to prioritise my mental well being and I push myself physically to something that will make me happy. This doesn’t mean I am not struggling or not in pain and it’s a really fine balance between the two things.

These are just a few of the examples that I hear on a regular basis, there are many more ways that this kind of comment can be made, and while often well meaning, many of them can feel dismissive and as though the person making them doesn’t really understand.

Next time you are talking to someone who is expressing how they feel or talking about something they are going through, listen and be compassionate, and think very carefully before starting a sentence with “At least”.

How to ask about someone’s chronic illnesses/disabilities

Humans are naturally curious beings so when we come across something we aren’t familiar with its only natural we want to ask questions and learn more. The problem however is that sometimes when dealing with sensitive topics questions can come across as nosey, insensitive or even down right rude.

As someone with a long history of chronic illness I have experienced many years of questions and curiosities. For the most part people mean no harm, but when you’re dealing with this on a regular basis it can become overwhelming. In this post I’m hoping to help navigate asking questions about chronic illnesses and disabilities and what not to ask. Pease remember I am speaking from my own personal experiences and preferences so always remember other people with chronic illnesses/disabilities may have different opinions.

* Always check its ok to ask about someone’s condition first.

I always prefer it when someone asks me if its ok for them to ask a question/questions before they begin asking. If someone just blurts out a question it can feel insensitive and puts me on the spot whereas if they ask permission first it gives me the option to say no, or to put boundaries in place for my own comfort.

* Ask the person if there are any subjects that are off limits

As we are all individuals, we will all have different levels of comfort when answering questions about our illnesses or disabilities. These comfort levels may even change day to day so it’s always really helpful if someone asks what my boundaries are and respects them.

* Don’t ask a question if you’re not prepared to deal with the answer.

I have lost count of the amount of times someone has asked me a question about my situation and then been totally unable to deal with the answer. This leaves me feeling misunderstood and alone. If you can’t deal with the worst case scenario answer then just keep the question to yourself.

* Don’t ask about prognosis without express permission.

Prognosis can be a really difficult topic. While its natural to want to know what someone’s future may look like, its a very difficult subject to talk about and there’s a chance the person doesn’t even have a full answer. If you absolutely must ask, always give a warning shot and wait for permission. Do not approach a stranger with this question.

* Don’t respond with unsolicited advice

Due to the fact I am so open about my conditions I often get people asking me more information about my illnesses including treatments and symptoms. The questions themselves don’t usually bother me, but people often can’t resist giving me unsolicited advice when I answer. This actually puts me off answering questions in the first place and can feel as though people think I’m not taking care of myself.

* Respect boundaries no matter when they are introduced

Boundaries are super important when dealing with sensitive topics. I often find that if I answer one question people think I will answer all questions even if they’re really personal or if its the middle of the night. People often get offended if I say no to answering more questions, especially if they have seen me talk about my illness on a social media profile. The person with the illness gets to decide how much they say, when they say it and who they say it to. It is entirely their right to change their mind about sharing, or to only want to share at certain times.

* Don’t make it about you

Although hearing about someone’s illnesses or situation can be difficult its important that you don’t make the situation about you by instantly talking about how it makes you feel or becoming excessively upset. If you have an established relationship with the person and/or its someone you are close to then it may be appropriate to talk about how the situation impacts you when the sufferer is ready to do that or once they have finished talking about their own feelings. If its someone you don’t know or you’re only having a one off conversation then its better to attempt to control your response and maybe talk about your feelings with someone else who isn’t impacted by the situation.

*Only offer help if you can follow through

It’s natural to want to help someone who is suffering, but sometimes we make offers and promises we can’t keep which can lead to tricky situations. If you’re going to offer help, please make sure it’s something that you can stick to. If you can’t offer practical help then a listening ear is often just as valuable. If you can give practical help, it’s usually best to ask the person for examples of the type of help they may need or want, rather than making assumptions or doing things without checking first.

*Don’t suddenly change the subject

If you have asked someone about their illnesses or someone is telling you about their situation, do not just suddenly change the subject. I have lost count of the amount of times someone has abruptly changed the subject when I am trying to open up to them. When someone is trying to talk about a hard situation it can make them feel extremely vulnerable and when they are cut off or the subject is changed mid conversation it can make them feel dismissed, unimportant and as though you just aren’t interested in what they have to say.

Gift ideas for chronic illness fighters

Gift giving can be tricky for anyone but when you’re buying for someone with a chronic illness it can be harder to know what they might find useful.

1 – Heat pads/ heated blanket

If the person you are buying for has any sort of pain linked to their condition or struggles with being cold, a heat pad or a heated blanket can be a really great way for them to ease some of the pain and protect themselves from the cold. Electric heat pads are even better because you don’t have to keep going to the microwave or boil the kettle to get heat, you just plug them in and off you go. Many of them have variable heat settings and safety cut offs to prevent over heating or burning.

2 – Comfy clothing

For many people with chronic illnesses, especially chronic pain or sensory issues, comfy clothing is such a blessing. This could be something small like some comfy/fluffy socks that don’t have cuffs or a cosy hoodie to wrap up warm with, anything that you’ve seen your loved one wearing that you could find a comfy version of. Clothing can actually be painful for some people with chronic illnesses and anything that makes it better is so appreciated, it’s also really comforting when you can just snuggle down in something comfortable and just relax.

3 – Fun mobility aids

If your loved one uses mobility aids then fun or luxury versions of those can be great gifts. I would always recommend asking before buying a mobility aid because preferences are so personal, but one way of doing it might be to take them shopping to get them a gift card for somewhere that sells mobility aids so they can choose what they think will work best for their needs.

4 – Skin care

Many chronic illnesses come hand in hand with chapped lips, itchy or irritated skin and dryness, once you have made sure your loved one doesn’t have any allergies, high quality and luxurious skin and lip care can be really nice as a gift. We get so busy taking care of our medical needs that we often forget to look after our other needs so getting something skin care related can encourage us to do other forms of self care and really look after ourselves.

5 – Cosy blankets

Similar to the comfy clothing, having a comfy blanket to snuggle up under when you’re feeling really unwell can be really comforting.

6 – Streaming service subscriptions/ gift cards

Being unwell a lot means lots of time in bed/on the couch with not very much to do. Having access to a good streaming service for movies/ tv shows can be really helpful. It helps to keep us occupied while promoting rest and relaxation. If your friend or loved one isn’t a bug movie lover then you could switch out a movie subscription for a music or audio book streaming service .

7 – Books

Another thing that comes with chronic illnesses is a lot of time waiting around in hospitals and doctors offices. If your friend or loved one is a book worm then a good book to dig into while they’re waiting around could be a great gift.

8 – Snacks

Easy to prepare and eat snacks that cater to any allergies your loved one may have are a great gift idea. One of the things I struggle with is having the energy to prepare food, usually by the time I have made my snack or meal, I don’t have any energy remaining to be able to actually enjoy eating. If I could have a never ending supply of easy to eat, low preparation snacks it would definitely encourage me to eat on those low motivation days.

9 – Fancy water cups/ bottles

Hydration is really important for everyone and many chronic illnesses actually make maintaining hydration more difficult. Many of us loose extra water due to symptoms such as vomiting or diarrhoea, or we deal with electrolyte imbalances due to the impact of our underlying conditions, so its really important we drink enough to keep us safe. Having an easy to grab and use water/drinks bottle to keep with us and keep topped up can really help with this, and who doesn’t love a swanky new drinks container?

10 – Chore coupons

For many with chronic illnesses basic chores become more difficult and sometimes even impossible. Chore coupons are a great way of offering help on the other persons terms, it allows them to choose the type of help they need on a particular day and they can ask for it in a non pressured way. It doesn’t have to be anything big, it could be something as simple as doing the dishes or walking the dog, or you could push the boat out and offer a deep clean if this is something you think they would both need and feel ok about. Our time is the most precious gift we can give someone and it will always be appreciated.

How do you do it?

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

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

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

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

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

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

Please don’t tell me it could be worse

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

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

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

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

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

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

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.

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.