Spoonie Essentials

I Am a Spoonie

I’ve been thinking for a while about collating a list of “Spoonie Essentials” or things that make life as a spoonie a little bit easier. Different things work for different people and there isn’t a one size fits all when it comes to chronic illnesses, but these are the things have have helped me, given me comfort or made my life a little bit easier.

Books

  1. Hyperbole and a Half – Allie Brosh
  2. The Truth Pixie – Matt Haig
  3. Living With the Enemy – Ray Owen
  4. The Boy, The Mole, The Fox and The Horse – Charlie Mackesy
  5. Miranda’s Daily Dose of Such Fun – Miranda Hart

TV/Film

  1. Five Feet Apart
  2. Brain on Fire
  3. Atypical
  4. Groundhog Day
  5. We Are Visible

Podcasts

  1. Sickboy
  2. This Is Not What I Ordered
  3. Chronic But Ironic
  4. Feminists Don’t Wear Pink (Scarlett Curtis)
  5. Shagged, Married, Annoyed (Rosie and Chris Ramsay)

YouTube

  1. Amy’s Life/Amy Lee Fisher
  2. Life With Stripes
  3. Georgina’s Journey
  4. Chronically Jenni
  5. Jessica Kellgren-Fozard

Health Care Esstentials

  1. Dry shampoo (Batiste or Colab Dry Shampoo)
  2. Body Shop Almond Milk Body Yogurt
  3. Au Lait | Scottish Fine Soaps – Body Butter
  4. Boots Tea Tree & Witch Hazel Exfoliating Face Scrub
  5. Amie Petal Perfect – Cleansing Micellar Water

Snug as a Bug

  1. Weighted blanket
  2. Hot water bottle
  3. Heated blanket
  4. Wheat Pack
  5. good pillow (I have a V pillow and a memory foam pillow)

Odds and Sods

  1. Large medication box
  2. A support system (friends, family, health care professionals, people who just get it)
  3. Technology to keep connected to the outside world
  4. A bag – fashionable but sensible. Mine is similar to this
  5. Mobility aids (crutches, wheelchair, cane, walkers etc)
spoonie-error-square1
Spoonie Authors Network

NB – If you aren’t familiar with the Spoonie Theory, click here

June Favourites – Lockdown Edition

june

 

Books

Instead of talking about books that I have read over the past month, I want to highlight books by Black and Asian authors, in the wake of the BLM protests and George Floyd.

  • Queenie – Candice Carty-Williams
  • Such a Fun Age – Kiley Reid
  • Why I Am No Longer Talking to White People About Race – Reni Eddo-Lodge
  • It’s Not About the Burqa – Mariam Khan
  • Does My Head Look Big in This? –  Randa Abdel-Fattah
  • I Am Thunder – Muhammad Khan
  • The Hate U Give – Angie Thomas
  • Clap When You Land – Elizabeth Acevedo
  • The Color Purple – Alice Walker
  • Noughts and Crosses – Malorie Blackman
  • The Girl Who Smiled Beads – Clementine Wamariya

 

Film/TV

I’ve been continuing to take advantage of lockdown by watching more things on Netflix. I loved Dead to Me, a comedy focusing on a widow who is searching for the person responsible for killing her husband in a hit and run. Unbeknown to her, the driver befriends her at a bereavement support group. In a weird way, it explores the funny sides of grief, loss and forgiveness and I can’t wait for series three.

Based on the book by Celeste Ng Little Fires Everywhere, is a recent adaptation for Amazon prime. I was slightly underwhelmed by the book, but I loved the series.

Glow Up has become a little bit of a guilty pleasure over recent weeks. It reminds me of when I was at university and my Tuesday evenings were made with another BBC Three creation, Hair, which followed hairstylists bringing to life crazy and unique hair designs, to be crowned the best hair dresser. Glow Up follows a similar theme but with makeup artists undertaking various tasks and elimination rounds. I didn’t want to like this, but I’ll hold my hands up, I love it!

 

Spoonie Favourites

I recently discovered B12 super energy patches. I decided to try these as my B12 levels aren’t great and I struggle with absorbing tablets due to my gastroparesis (and I take so many on the daily). It’s hard to tell whether or not they have made a difference, or if it’s just been a placebo effect, but I seem to have more energy and less fatigue so it’s a winner for me.

Odds and Sods

Okay so it’s not really a secret that I love the Body Shop, so whenever they realise a new range, I’m normally pretty happy with it. Their latest range of cooling cucumber and zesty lemon has not disappointed. The cucumber body yogurt is brilliant if you are a little bit sunburnt and the lemon is a lovely scent without being over powering.

I recently decided to have a moment of extravagance and purchased the most expensive skin care item that I have ever bought. Said item is Charlotte Tilbury’s Magic Eye Rescue. At £42 for a 15ml pot, it is a lot of money and whilst I really love it, I don’t know if I would buy it again because I cannot justify the price. My eyes seem slightly less puffy and the skin feels smoother but my black bags haven’t magically disappeared which was what I was hoping for!

My final favourite for this month is a bit of a weird one. As many of you will know, May is Ehlers-Danlos Syndrome awareness month and out of coincidence, Matalan have been selling a cute little zebra cushion. Zebras are the EDS mascot so it was meant to be! At the time of writing, it is out of stock, but they do have other zebra-ish stuff, so it’s worth a look.

 

 

 

Supporting Someone With a Chronic Illness

I recently wrote a post about how to support someone with depression. It made me realise that talking about how to support someone with chronic illnesses would be worth touching upon too. It can be really hard to grasp the reality of not ever getting better, unless you’ve actually gone through it. And very often, being hit with cliched platitudes can leave us feeling worse. It’s really important to note that illness and pain are not character defects or signs of weakness. People living with autoimmune or other chronic illnesses are proof that the human body is a fallible system. Life is imperfect and our bodies are too. So below are some tips on how to support people with chronic illnesses.

Believe them. So often, people with chronic illnesses, especially if they are invisible, are told that it’s all in their head and spend years fighting for validity and a diagnosis. A lot of the time, a person might look okay, but that doesn’t change the fact that they could be in a lot of pain and it definitely does not mean that they are suddenly cured. People frequently have to put on a brave face and that might include a full face of makeup and being up and dressed. Some chronic illnesses are rare, meaning that doctors don’t always have the specialist knowledge around conditions and patients become the experts. Unfortunately, instead of admitting that they aren’t always knowledgeable, doctors can become dismissive Patients are branded as being dramatic at best and hypochondriacs at worst. Symptoms are brushed aside as being psychosomatic and it isn’t uncommon to be silenced with anti-depressant medications. 

Listen to what they’ve got to say and actually hear them. Asking how a person is can make such a huge difference because it shows acknowledge of their condition. They might not always answer honestly, often saying “I’m fine” is a lot easier than saying “I’m fed up, I’m in a lot of pain, being awake is painful and I just want to go back to bed and hide from reality” but in asking, you’re opening the door and allowing that conversation to take place. It’s really easy to not be an idiot and inconsiderate. Reaching out to someone is easy, but be genuine about it. Remember that you are not their therapist and don’t try to be one. Chronic and mental illnesses often do go hand in hand so don’t blur the boundaries between friendship and therapy. Constant and repetitive talking isn’t always needed, follow their guidance and know what is best for them.

Find out more about their illnesses. When I first became ill, it meant the world to me when a friend said “I’m going to research more about xyz” because it showed they cared. You’re not going to have all the answers and you don’t have to become an expert, but understanding that pain isn’t going go away and having an idea about what is faced in day to day life means that people feel less isolated and alone. Don’t pretend that the illness isn’t there: it is very prevalent is their lives and it isn’t going to go away if you ignore it.

iceberg2-1-750x750
Don’t give up on them or abandon them when times are tough. Constantly feeling unwell can turn people into a bit of a bitch. Think about having flu all the time combined with widespread pain, whilst trying to walk through treacle backwards. It can be a really shit situation. Losing friends is an inevitable part of dealing with a chronic illness but that doesn’t make it any easier. Knowing that you’re too complicated to deal with is hard to hear and guess what? People who are chronically ill do not choose that lifestyle. It’s a lot harder for the person unwell than it is for those around them. Pick up the phone, send a text, send a cute card in the post, offer to help in practical ways. Would they like it if you turned up with coffee? Or some snacks to share whilst watching a trashy film? Stamps for letter-writing? If you do bring a little something, make it nice. I think people tend to skimp on gifts for chronically sick people: they aren’t going to get better so it can become expensive over time. Remember, a gift does not have to cost money.

Ask how you can help. But understand that there might not be a simple answer to this. I know from experience that trying to juggle being ill and my life can be really hard and I don’t always have the brain capacity to think about how other people might be able to help me. Use your brain and think about what might be helpful. Would help with a food shop be useful? Think about specific things that might help.

giphy

Don’t belittle their experiences or their treatment plans. Different things work for different people. Some people will respond well to traditional medications, whereas other people will lean towards more holistic therapies. And that’s okay. Criticising treatments is pretty toxic and incredibly unhelpful. Everyone gets tired and everyone gets ill from time to time but that is not the same as having a lifelong, enduring, chronic illness. Don’t confuse the two.

 

When you’re in pain, it feels awful having to let your loved ones down but it feels unbearable to not be believed or to be criticised when you are trying your absolute best. Chronic illnesses form a huge part of people’s lives and it’s understandable that people will talk about them, a lot.

 

Dear 18 Year Old Self

Dear Laura,

You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.

Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!

Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.

Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.

Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.

Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.

Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.

Make memories. Take photos.

Stand up for yourself.

Risk it.

Find and enjoy whatever it is that makes you happy.

Respect yourself and respect others.

Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.

Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.

Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.

You’ve got this,

Laura x

unnamed-4
Emily McDowell

 

 

I’m Doing Okay

I feel really uneasy publicly saying that I’m okay and that things are going well. Not because I need validation around being ill, but because I am a little bit scared that somehow talking about things being okay will jinx the situation and things will start going very wrong. But I can’t live my life in fear and actually, for the first time in a very long time, I am happy, content and enjoying life. Obviously the whole corona-coaster thing is problematic and it throws up issues, but as I said in my post about dealing with lockdown and mental health, I am coping amazingly well.

So what has changed?

A few weeks ago, things were not this good. The exact opposite in fact. As it happened, the referral into the mental health team, that was suggested, was refused and the additional meds that I was put on didn’t work for me, and I think that this is the best thing that could have happened. I decided to take control of my own life and to stop coasting through, depending on other people. It came down to mind over matter, although I want to make things very clear at this point, that I do not think that this is a clearcut “cure”, not for me or for anyone else. My problems haven’t magically disappeared, but I made the choice to start addressing things, instead of self destructing and living in a mindset where I had given up.

I know and accept that I still need help, but I want to be in control of that help and to get support in a way that I find is beneficial for me. My experiences with the community mental health team were poor, I would leave appointments feeling worse than when I entered, I was made to feel like I wasn’t sick enough to receive help, despite being very unwell and I felt that I wasn’t in control of my own life or choices. I’m still engaging with therapy but for the first time ever, I am viewing it very differently. I have been having therapy in varying forms for years and years and had always just accepted that I would have therapy for life and that was that. But now, without setting myself a time limit, there are certain things that I know that I need to work on, and more importantly, I feel ready to work on. It’s not going to be an overnight thing, it is still probably going to take years of work but I’m not going to just tread water and not move forward.

Be-Kind-To-Your-Mind-T-Shirt-display
Olive and Frank

I’ve also learnt what works for me and what doesn’t. My choice has been to engage with services such as Mind and other local charities, and dip in and out when I need support. I’m not pinned in and it isn’t time limited. Plus, the wellbeing workers who I have met before, are all good eggs and genuinely care and want what is best.

Most importantly, I am making plans for the future. I’m using my time off work sensibly and working on continuing professional development, as well as undertaking various online courses to improve my CV in the long run. I’m really excited to say that I have applied for a masters degree in social work and I’m currently going through the agonising wait in hearing back from the university. I am making plans around moving out and setting myself goals in achieving that.

It’s crucial to say, I am not naive. I don’t think that I am magically better. There are still things that I am struggling with, a lot, but I am accepting those things and being honest about them. My physical health is still problematic and causes its own limitations and that is always going to be something that I have to work around. I’m also not kidding myself into thinking that my mood and ability to cope will not, ever, fluctuate again. But I kind of feel more prepared for that. Small steps. That’s all anyone will ever ask for.

d7jkco7-46dd73e8-461f-4c35-95cd-26360478f81e

 

 

 

 

May Favourites – Lockdown Edition

source

It’s been a long long time since I last sat down and wrote a blog post, more on why in another post. But as way of easing myself back in, I thought I’d kick off with a monthly favourites post, looking at all the things that I have loved so far in May. Obviously if you’re living in the UK at the moment, we are in lockdown because of COVID-19, so most of the favourites will be based around making life as painless and as interesting as possible, when you’re stuck looking at the same for walls for months on end!

 

Books

My absolute favourite book from this month has to be Q by Christina Dalcher. Long time readers of my blog might remember how much I obsessed over Vox, Dalcher’s first novel (I crowned it my book of the year) so I had high expectations for Q and it did not disappoint. It is powerful, gripping and a little bit shocking: in a world where being perfect is everything, what happens when you are faced with someone you love not making the grade? I think what hit me the most is how this book is actually inspired by historical events. While I knew that eugenics had been embraced by the Nazis, I was completely unaware of the American eugenics movement of the early twentieth century that predated this. This novel looks at eugenics in a 21st century society, leaving the reader wanting more and more. I already cannot wait for Dalcher’s next book. 

After reading Q, I’ve felt like I’m stuck in a bit of a rut when it comes to books, simply because I don’t think I’ll ever read anything as powerful or as good. That said, I really enjoyed Dear Edward by Ann Napolitano. I thought that this book was beautifully written. When a plane suddenly crashes, twelve-year-old Edward Adler is the sole survivor. In the aftermath of the crash, Edward struggles to make sense of his grief, sudden fame of being a sole survivor and find his place in a world without his family. But then Edward and his neighbour Shay make a startling discovery – hidden in his uncle’s garage are letters from the relatives of other passengers and they are all addressed him. Based on true events where a nine year old Dutch boy was a single surviving person of a plane crash, this book looks at what it means not just to survive, but to truly live.

I also really enjoyed Seven Lies by Elizabeth Kay. This dark and gripping story looks at the friendship of Jane and Marnie, inseparable since childhood and how their friendship slowly unravels over the course of seven lies, eventually leading to a death. My only criticism was that it ended too quickly. The book itself was very fast paced but the sudden nature of the ending made it seem like a slight anticlimax.

Films/TV

Having spent all of the past few months stuck in the house due to lockdown and needing to isolate because of health conditions, I have very much made use of my netflix subscription. One of the best series that I have seen in a long time is Unorthodox, based on the book of the same name, by Deborah Feldman. As a member of the strictly religious Satmar sect of Hasidic Judaism, Deborah Feldman grew up under a code of relentlessly enforced customs governing everything from what she could wear and to whom she could speak to what she was allowed to read. In Unorthodox, we follow the story of Esty, a young Jewish woman escaping a strict religious sect in Williamsburg, New York, and building a new life for herself in Berlin. I’m ashamed to say that my knowledge around Judaism is limited so I learnt quite a lot watching this series, although did have to concentrate due to the amount of Yiddish spoken. 

I’m a bit late to the party on my next favourite, but I finally watched After Life, written by and starring Ricky Gervais. I’ll be honest, when I started watching it, I was a little indifferent. I’m not a huge fan of Gervais so I was not in any way prepared for the six hour emotional onslaught that happened when I watched series one and two in one sitting. I have never cried so much at a TV programme. After Life follows Tony, whose life is turned upside down after his wife dies from breast cancer. He contemplates suicide, but instead decides to live long enough to punish the world for his wife’s death by saying and doing whatever he wants. Although he thinks of this as his “superpower”, his plan is undermined when everyone around him tries to make him a better person. If you haven’t watched After Life, stop what you are doing and watch it right now. You’ll laugh, you’ll cry and most of all, you’ll want to give your loved ones a massive hug.

Spoonie Favourites

Being stuck at home has meant that I haven’t been able to have my usual physio appointments and my body is starting to struggle. A friend recommended buying an acupressure mat, which is designed to relieve stress and pain. The cynical part of me isn’t sure if it’s making much difference as I’m still stressed and I’m definitely still in pain, but I will do anything to try and get my body to July when physio appointments will hopefully resume.

 

Lockdown Favourites

It’s seems only right to finish off by looking at some of the things that are making lockdown that little bit easier.

Firstly: jigsaws. I’d like to say that I am a pro at completing jigsaws, however this isn’t the case. I lose my mind after about 10 minutes, but it’s kept my brain busy, especially on wet days when I’ve been hibernating.

I also gave into temptation and ended by buying Sims 4. At the time of buying it was massively reduced (that’s my excuse anyway) and I’m managing to pass many hours building my dream house and then killing off my sims in as many dramatic ways as possible.

I’m not sure if I’d class it as a favourite but I bought myself a cheap pair of blue light blocking glasses for when I’m video calling people, as I seem to end up with a banging headache from increased screen time. Time will tell whether these make any difference, I suspect that I actually need my eyes testing and need new glasses, so my online purchase of blue light blocking glasses are only to bridge the gap until an eye test is possible!

 

I hope this gives you some inspiration of things to do or read with the world being a very strange place. Keep safe and remember to sing happy birthday when you wash your hands.

 

The death of my dad: twenty five years on

This week marks twenty five years since the death of my dad. It’s a bit of an odd time of year, if I’m honest, because my dad died two days before my first birthday so going from two extreme moods in such a short space of time always messes with my head a bit.

Something I’m asked quite often is if i miss my dad. It’s a hard question to answer because it’s difficult to miss something or someone you don’t know. I don’t have any memories of my dad, although we is talked about openly by family and friends. At times, I miss the idea of having a dad and I miss the idea of having a more conventional childhood. But realistically, the conventional childhood of two parents and 2.4 children is becoming less common and “normal”.

As a child, I can remember times when I was embarrassed by the fact that my dad wasn’t alive. That might sound odd, I think it was linked to not wanting people to feel sorry for me. When I was in year three, my class teacher asked me, in front of the whole class, why my mum had only put down for one ticket for an event at school. I didn’t have the confidence to say in front of everyone that it wasn’t a mistake, it was just my mum and I and, actually, my dad was dead. That was my normal, but so very abnormal to other people.

By the time I reached my teenage years, I became more comfortable in telling people that my dad was dead. I met other people who had experienced bereavement and I didn’t feel as isolated. As my understanding grew, so did my outspokenness. One of my biggest frustrations is being lumped under the single parent umbrella. My mum did not choose to raise mess a single parent: when you have a child with a person that you love, you don’t envisage that it will result in raising the child alone, be that as a result of divorce or separation or death of a parent. I am from a single parent family, as are many of my friends, for various reasons. I defied the statistics and wasn’t suspended from school (the opposite, I went through school without ever getting a detention), I completed my a-levels, I didn’t and still don’t have a criminal record and I was not a teen parent. I valued my education.

When you lose a parent, it’s the big milestones that can really test me. The big birthdays, the achievements, the weddings and the thought of potentially having children, in future, and them not knowing their grandfather. However, as time goes on, I’m able to see them as a chance to remember and celebrate their part in my life rather than simply suffering through these events all the time. I’ve also learnt that not everyone will get it. Please, don’t bitch about your parents in front of me, unless you have extenuating circumstances. I’ll never forgot, at the age of ten, one of my peers told me that I was lucky that my dad was dead, because it meant that it was one less parent I’d have to convince if I wanted something. Sure, I’m really lucky. Get some perspective on how truly fleeting life is. This is a club that I never wanted to join and yet I can’t revoke my membership.

Having lost my dad at such a young age, I get very anxious at the thought of losing my mum. Obviously I’m not stupid, no one is going to life forever but the thought of her dying makes me want to physically throw up. For my whole life, it’s been my mum and I, battling against the odds and ridings and ups and downs and the thought of facing life alone or without her really scares me. When I was a child, I used to panic beyond belief whenever my mum was ill, even if it was just a cold. It puts me in a situation completely out of my control and I hate that.

Life does go on, but there will be times even all these years later, I will still break down like it happened yesterday. When those moments happen, I’m not sure why I’m breaking down, because I don’t know any different. This is my reality.

 

 

Guest Post: Living with Crohn’s Disease

Guest-post-for-Ranking-improvement

Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.

I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.

My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made.  At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.

It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.

So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.

Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is.  If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.

Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.

ef88b98b69567ed160b6e3ffef43280d

 

If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton  vlogs about life with IBD, having recently had major surgery, resulting in a stoma.