crohns – Chronic musician

10 Things I wish everyone knew about life with chronic illnesses

There are many aspects of chronic illnesses that you will only truly understand if you actually deal with one yourself . This can make it difficult for those of us dealing with these illnesses to integrate into society and maintain jobs, social lives, intimate relationships and more. Here are 10 things I wish everyone knew about living with chronic illnesses.

1 – There’s no time off.

When you have a chronic illness its a 24/7 365 day job. There’s no putting in holiday leave, no baby sitters or task sharing and there are no allowances for holidays or special events. We have to deal with our illnesses where-ever we are, no matter what we’re doing or who we are with. Even at night, when the world is sound asleep we are often up late taking meds, managing pain and other symptoms, trying to maintain hydration, adjusting positions and keeping our temperature just right. It’s exhausting and its lonely, no matter how good your support system is it is impossible to fully communicate how difficult it is to live with these things 24/7. Burn out is common among people with long histories of chronic illnesses and its really not surprising when you think about it, so give us a little grace if we’re a little cranky or we slip with our household duties, we’re working a full job just existing.

2 – Doctors don’t know everything

So many times over the years I have heard “why didn’t you go to the doctor” or “you should get a different doctor, you should be better by now” or words to that effect. Here’s a ground breaking fact – doctor’s don’t know everything! That’s right! Doctors are humans just like the rest of us and it is impossible for them to have answers for every problem and every ailment. There is a lot about the human body that we still don’t understand yet which is complicated by the fact that they can’t ethically examine the human body while people are alive if there’s a chance it will cause harm. As a result, there are a lot of things doctors can’t cure, they can’t always just write a prescription and make everything better. The best doctors I have had are the ones that acknowledge this, they know they don’t have all the answers and they don’t make promises that they know they cannot keep, instead they will talk to me about the options we do have and why they think each option is good or bad. They make sure that I understand why they can’t make everything better, and work with me to ensure the best quality of life possible while trying to figure out a long term plan.

3 – Sleep doesn’t fix fatigue

We’ve all been tired, whether we’ve pulled an all nighter getting college work done, stayed up late chatting to a new beau or lost sleep to a loud neighbourhood party we all know what sleep depravation feels like. We also know that usually the answer is a good nap followed by a few really good night’s sleep. Fatigue is different, fatigue is feeling like the simplest tasks are 100 times more difficult, something as simple as going upstairs becomes a mammoth task, walking for 5 minutes feels like walking a marathon. For many people with chronic illnesses fatigue is a well known friend, just existing with a chronic illness burns more energy than existing in a healthy body, simple tasks take extra effort and we often have the double whammy of disrupted sleep due to medication or symptoms. For us, a nap or a few good nights sleep won’t help, we could sleep for a week straight and still wake up feeling exhausted. What can help is pacing, breaking tasks up into smaller, more manageable chunks, only doing a certain amount in a day, taking regular breaks and staying on top of food and drink. If you want to help someone with fatigue, taking some tasks off their plate may be a good way to go, you could offer to cook them a meal, take the rubbish out, watch their kids or even offer a relaxing activity such as a movie night so they get a chance to hang out and rest while feeling included. What really helps is asking what the person needs and doing it without judgement.

4 – Unsolicited advice isn’t helpful

Whenever someone is sick and suffering it is totally natural to want to help them, to want to fix things for them and make their lives easier. Any good person hates to see the suffering of anyone else, especially people they care about and this drives them to give anything they can, including advice. Unfortunately this advice isn’t always wanted and in some cases can be distressing and even dangerous. If someone has been dealing with a chronic illness for any length of time there is a good chance that they have already tried every reasonable step to help with both the underlying illness and the symptoms. Dealing with these illnesses is exhausting and isolating, so imagine what it’s like when everyone you talk to has an opinion on what they’re doing and how they should be managing things. If you really, really want to give advice, ask the person if they would like to hear your thoughts first, for example if you’ve heard of something that might help nausea, you could say “I saw a new way of dealing with nausea the other day, would you like to hear about it?”. If they say no, then listen! Don’t continue to push your advice if they don’t want it. Just as importantly, if they say that something won’t work for them or that they already know what to do, then please just believe them. They aren’t saying it to be difficult and it’s not that they don’t trust you or don’t want to get better, they just know their body and their situation better than you do and have a good idea of what will and wont help.

5 – Rejecting an offer of help isn’t personal

It’s absolutely natural to want to help someone who is struggling but sometimes there isn’t anything you can do that will actually help the situation. There are many reasons why someone may say no to an offer of help, they may already know that there isn’t actually anything that will help in that moment, for example they may already have all the help that they need, or they may need help that is of a more personal nature than they feel comfortable asking you for. Over the years I have had people react very negatively if I have turned down an offer of help and people take it extremely personally, but it’s never ever intended that way. If you really want to help, asking the person what they really need is a good start, if there’s nothing they need, then you could ask if there’s anything they *want* to do that they wouldn’t normally ask for like a fun trip or yummy food that isn’t just the basics. If this still isn’t needed/wanted at that time, you can let them know that if anything comes up then you will be willing to help even if time has passed.

6 – Not all illnesses/disabilities are visible

This is something I really wish more people would understand. There are many disabilities and illnesses that are not visible on the outside. For many people with chronic illnesses it’s impossible to tell just how sick they are from their appearance. Many times I have had people tell my I don’t look sick or even that I “look better” while I was actually at my sickest. Even during months of endless hospital stays, being unable to eat without being sick, constant pain and exhaustion I had people tell me how well I look. I have been judged so many times for sitting in a disabled seat on the bus and not getting up for someone older than me because people just assumed I was being lazy, they couldn’t see my immune system destroying my intestine or my joints feeling like they were on fire. Always remember that it’s impossible to truly know what is happening under the surface and someone may be fighting a battle that you know nothing about.

7 – Using a mobility aid does not mean you can ask me private medical information

In the last 6-7 years I have gone from using no mobility aids, to using a folding walking stick, to using crutches, a wheelchair and most recently a rollator. I currently alternate between the later three depending on how bad my symptoms are and what I am going to be doing. For some reason people see these and think it is appropriate to ask me why I am using them. I understand curiosity, and in some contexts I don’t mind answering questions, but when I am minding my own business waiting for the bus, or trying to pay for something in a shop, I would rather not be stared at and quizzed about my medical conditions. I am just trying to get to my appointments or get my shopping like everyone else, and
I would like to do it without being made to feel like some sort of spectacle.

8 – Having fun doesn’t mean we’re better

When you have chronic illnesses and you’re always in pain or feeling rotten, you learn to have fun regardless. Of course there are days where you have no choice but to stay in bed or crash on the sofa, but if we waited to feel well before doing fun things we would waste our whole lives. People with chronic illnesses become very good at having a good time even when feeling horrendous, we learn to pace ourselves, we learn to plan for days for events to allow us to enjoy them, we learn to clear our diaries for days or weeks before and after so we can recover. We also learn to find joy in the smallest things and in moments that most find insignificant. We can make memories sat on the sofa laughing about silly things, or at a music gig , or even in a hospital waiting room. We don’t take any chance at joy for granted.

9 – One good day / week/ month doesn’t mean we’re better

Many chronic illnesses and disabilities fluctuate, it’s quite common for people with a chronic condition to experience periods of less symptoms accompanied by periods of worsening symptoms known as a flare up. For many, the occasional good day/week/month is refreshing and a nice break, but it doesn’t mean we’re all better. For one thing, a good day for us is often still what most would consider bad, we are often still in pain or fatigued etc, and we still have to be careful about what we do so that we don’t make things worse for ourselves when a flare up does start. For another, we know that the good day won’t last forever, we know that the symptoms will be coming back just like before, so even if we get lucky and get a good stretch of time before the other shoe drops, we know that it WILL drop eventually and we have to be constantly prepared.

10 – Pity parties are allowed

We don’t want you to feel sorry for us or pity us, but we also don’t want to feel like we have to be brave and strong all the time. Being constantly sick sucks, it’s hard always being in pain and knowing there isn’t a way to stop it, it’s challenging being reliant on medications, devices and even other people to be able to live. It’s exhausting being on a never ending ride of meds, hospital appointments, phone calls and self advocacy. We are allowed to throw ourselves the occasional pity party and it’s not OK to shame us for it or make us feel like we’re weak or like we should be handling things differently. The key to this is that it’s occasional, and that it’s driven by us and not others. If it starts to be a regular thing and your loved one can’t seem to find any joy in life, it’s a good idea to just offer them some extra support and love. If it’s just occasional and they can still find joy and things to be happy about, then let them be, join in if they would like that, and pity party all night.

So that’s my 10. This is all from my own point of view and experiences of course so other people may feel differently. There are many more things I could add to this list, but these are the ones that come to mind most freely. If you’ve read this far I hope it’s got you thinking a little about life with chronic illnesses. If it’s resonated with you consider sharing it with a friend and think about it the next time you interact with a chronically sick loved one.

Differences between IBD and IBS

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

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

Symptoms

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

IBD

Symptoms of IBD can include

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

IBS

Symptoms of IBs can include

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

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

Testing

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

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

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

Key differences

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

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

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

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

World IBD Day 2024

Sunday 19 May 2024 is world IBD day,

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

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

Crohns disease

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

Ulcerative colitis

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

Indeterminate colitis

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

Symptoms

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

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

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

Joint pain
Fatigue
Eye inflammation
Mouth ulcers
Osteoporosis
Skin issues

Diagnosis

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

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

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

Treatments

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

Steroids

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

Liquid diets

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

5 ASAs ( aminosalicylates)

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

Immune suppressants

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

Biologics

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

Surgery

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

Worst case scenario

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

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

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.

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.