The Trouble with Living ‘Chronically’

I doubt anyone has ever envied the lifestyle of a person living with a chronic illness. I can’t say that I blame them, but what we go through on a frequent basis is a lot more complex than popping pills and having blood tests. Whilst there is an argument to say ‘what doesn’t kill you makes you stronger’, there is also a small part of me that’s a bit bored of getting ‘stronger’. Here’s my list of things that all people living with a chronic illness can relate to…

Developing ‘The Fear’
Your day to day life changes a lot after being diagnosed with a chronic illness. Having said that, it will probably have changed a lot before your diagnosis, as often the symptoms of your condition will have been active far long before you get given a medical terminology for what’s wrong with you. With a disease relating to the bowel such as Crohns or Colitis, you may often find yourself panicking to plan toilet trips and nap times to ease the fatigue. I hate the yawn-worthy false empowerment of ‘my illness does not define me’ but the message within that statement is worth acknowledging. Yes, you have a Chronic Illness and yes actually, it does become a part of who you are – but the thing to empower yourself with is embracing all that comes with it and to encompass the good alongside the bad, knowing that the ‘bad’ parts are not the elements to focus too heavily on.

Learning to Listen to your Body
No one knows you better than you. You may want to go out drinking until 3am but if your inflammation is flaring up then that just ain’t happening honey. I spent far too many nights out when I should have been at home resting – and every time I regretted it as I made myself more unwell in the long run. Try and learn the signs that your body is giving to you – and respect the body you’re in. Unfortunately there are no replacements for your health.

Scheduling Around Appointments
Working a full time job, trying to balance a healthy social life and fitting in time to rest and relax is a hard enough challenge as it is – without the frequent hospital letters asking you to come in for your next check-up. Even something as small as visiting the doctor can turn into a two hour wait for a blood test at the nearest hospital. When you get diagnosed with a chronic illness, sometimes it can be hard to factor in the more long term implications that can have on your time and your schedule. Not all bosses and friends are understanding, so try and find out a routine that works – or tell them to sod off.

Overusing the word ‘fine’
The second most bland word in language next to ‘nice’. This will be your go-to word when people ask how you are. The secret definition of the word ‘fine’ can be easily translated to: ‘I’ve had 2 hours sleep due to steroids and in-between I’ve been sat on the toilet shitting out blood. I can’t eat or drink anything without upsetting my stomach, which you would never guess, as my face has ballooned like a puffer fish thanks to 8 steroid tablets a day. But how many times can I tell you the same story, so yes, sure; I’m fine’. It can be very hard for people to relate – sometimes you just don’t get it until you get it. Allow yourself to forgive people for not being able to understand, and remember not to accept being categorised in the ‘fine’ column if you’re not okay.

Remembering your Mental Health
Dealing with any chronic illness can be completely overwhelming. It is a complete change in your world and can have a massive impact on your body. However, do not forget the emotional implications as well as the physical. Learning to live your life with an illness that you cannot cure can feel like an enormous weight to carry and yet it is very easy to push the issues to the back of your mind rather than deal with them. Teach yourself the significance of making time to process things and practice reaching out to trusted ones or professionals if you need someone else to talk to. Your mental health is just as important as your physical, so make sure you give it the same respect and attention.

 

Are you living with a Chronic Illness? What are your tips to living life in the chronic lane?

How to Get On With Your Consultant

As a sufferer with a Chronic Illness, it’s more than likely that you’ll have a plethora of new ‘friends’ that you may often see more regularly than your normal friends. GPs, consultants, pharmacists, specialists…the list can feel endless. But not all relationships are a positive one.

So using my experience with all of the above over the last three years, I’ve compiled a list of my top tips on how to optimise your relationship (with even the most difficult professional)…

Remember They Are a Professional 

Despite the fact that you might not always agree with them, whoever you have been assigned to see has years of medical training under their belt. It is very easy to assume an ego of ‘its my body, not yours’ when being confronted face to face with consultants, but unfortunately the hospitality mantra of ‘the customer is always right’ does not apply in a Hospital setting. In order to have a healthy relationship with one another, the most important thing is to learn to respect one another.

Know Your Shit 

What I have often struggled with, is that the viewpoint of medicine is constantly changing and evolving. Therefore, it’s highly important to do your own research – especially if you want to bring a new thought to the table. As someone who has often found some medical advice a hard pill to swallow (excuse the pun) I know first hand how important it is to go away and do my homework before my next appointment. If you want to have a conversation about alternative treatments, it is good to have done a bit of background research so that you can openly discuss your options.

Master the Listen/Talk Balance 

Having open ears in any consultation is always crucial. The person opposite you has got to where they are for a reason, so make sure you absorb as much information from them as possible. However, sitting there in silence isn’t right either. It can be really easy to slip into the habit of feeling overwhelmed by the facts presented to you and to cut through the medical jargon, so make sure that you are vocal with your concerns, thoughts or opinions. You are much more likely to walk away from your appointment feeling more confident if you have been able to have an open dialogue with your consultant compared to feeling agitated or resentful to them if you’ve not been a part of the conversation.

When in Doubt, Ask!

We aren’t all medically trained, so sometimes the lingo can be a little confusing. Especially if, like me, you were diagnosed with a disease that you had barely heard of, it is really important to always ask questions! Often negative relationships or feelings can evolve from misunderstandings, so remember to don’t just ‘hear’ what they are saying, but listen so that you understand. You aren’t expected to be an expert on this, so ask away! No question is a stupid question.

Take Notes 

Being in the consultation can often seem like a lot of information crammed into a very short space of time, and you can reflect on your appointment a few hours later like; ‘Huh?’ I always make sure to take notes of every session, even just the check ups, in case there is information provided that I may later like to look back on. Whether it be some notes so that you can do your own research or questions that you then would rather ask an online community, make sure to bring a pen (so old school, just use ‘notes’ section in your phone if you would prefer) and jot down a really brief summary of everything being discussed. That way, you can feel confident that you can ‘pick up where you left off’ even if you have a new consultant – as there is nothing more challenging to having a positive view on the system when you are constantly seeing a new consultant with no continuity. So at the moment they are a bit foggy with your medical history, notes haven’t been passed over correctly or they weren’t on the scene when you had a previous important conversation, you can be there to confidently fill in the blanks!

 

Hopefully some of the above is helpful and you can bring in a few of the thoughts into your next appointment to ensure a happy and healthy relationship with the medical professional in your life!

Have any other tips? Please share in the comments below! L x

Moving Away from Medication

I’ve resisted writing this post for quite some time as it seems to be a rather controversial subject in the world of Inflammatory Bowel Disease. Since being diagnosed in 2015, I’ve been on a cocktail of different medications including Mesalazine, Prednisolone, Budesonide and Azathioprine. I was always able to control my symptoms with a selection of the above at any one time, but despite achieving remission from Azathioprine, something just didn’t sit right with me.  Continue reading

Hair Loss

It’s strange how as a female, so much of my identity was defined by my hair.
When I was 14, I became absolutely obsessed with my locks – products, extensions, colours…I was a chameleon and I loved it. When I was 16, I told my Mum that I wanted to be a hairdresser (it was a short lived dream) and when I was 20 I decided I wanted to create my own hair-care brand (I didn’t).
Despite these phases, the way my hair looked and felt remained the core of my identity. However, the relationship I have with it today has been somewhat of a challenge. Continue reading

Travelling with Crohn’s – Community Q&A

So, recently I was contacted with a question about whether or not I had ever been travelling whilst having Crohn’s Disease. We’re not talking about a 10 day Holiday to the Balearic Islands, but more like a 10 month trip around Asia. Sadly, I have not done the ‘travelling thanggg’ so rather than give up and be unable to help with any advice, I put the feelers out to you wonderful people, and have managed to get your feedback and create my first Community Q&A post – using your words, your experiences and getting answers from there! Continue reading

New Year, Same You

Hello, party people! Happy New Year – even though we are now a week deep into 2018. Whoops. How is everyone doing? The festive period can be a bit of a weird one, especially if like me, you don’t go to your family home for Christmas anymore. But whatever December threw at you – you made it, and you’re here, reading this; so well done, you! Continue reading

Support

The word ‘support’ is a bit of a weird one. It has weird connotations to me – like ‘support group’ or ‘support bra’ but sadly neither of those items are what I want to talk about (although let’s see if I can slip them in somehow…)

What I really want to put on the table, is the importance of getting the support you need when you are battling a Chronic Illness like Crohn’s Disease and why not allowing yourself to be supported is probably hindering your health.

Continue reading

Crohn’s & Colitis Awareness Week

Our day has arrived, babies! 1st December – 7th December is Crohn’s & Colitis Awareness Week in the UK and a chance for us to have our voices heard and make our mark.

Regarded as a notoriously ‘invisible illness’, the campaign is aimed at #MakingTheInvisibleVisible – trying to reach out to people who are unaware of Inflammatory Bowel Diseases as well as bringing more visibility to these illnesses to those who might not know a lot about it.

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Adios, Azathioprine

Before I start, I just want to make it very clear that I am not a trained medical professional, nor should anything I say be taken as ‘good advice’ – I write about my own personal experience and journey to share my story with others battling a similar illness, but please always seek professional help if you wish to discuss your medication or condition.

I was first prescribed Azathioprine probably back in February 2017, which in short means that I had been on it for 8 months. Initially, I was set a dosage of 125mg before blood tests revealed that there was too much of the Immunosuppressant in my body and my hospital Pharmacist decided to take me down to 75mg a day.  Continue reading