My Colitis life in lockdown

My Colitis life in lockdown: The struggle is real

By Nia Purslow, 14th July 2020, 15:28 GBT

The good, the bad, the happy and the sad, yes I’ve ridden every wave of emotion during this lockdown, I’ve been there, I am there, and so the adventure continues…

But how have I kept myself sane during these last four months, you may be wondering?

Well, living with Ulcerative Colitis already has its daily challenges, and anyone with a long-term chronic illness like mine will know that the struggle is real!

However, despite living with an autoimmune disorder since the age of 21, receiving a plethora of treatments, a blood transfusion and a few hospital admissions along the way, not forgetting the amount my arms have been used as pin cushions, I have lived and learnt to laugh instead of cry, focus on the good and to always believe I will get through it, no matter how hard it gets.

After all – Bad times don’t last forever.

I see them as temporary obstacles along the way to success, back to my journey of wellness.

So when I read the letter sent to me by the Government at the end of March, stating that I am in the vulnerable group, and was told I would be self-isolating for twelve long weeks, I don’t know why – but my initial feeling was sadness.

Of course I know it is for the best to protect ourselves from this awful virus, which has already ruined so many lives, but I think part of me felt like my freedom had been taken away, something I had only just regained after a nasty flare up in November 2019, which left me bedridden and unable to walk for three months.

December 2019

My drive to get back on my feet and strong enough to go back to work was my main priority prior to the lockdown, being able to provide for myself again, and not to have to rely on others – I just wanted to live a happy and normal life again, as normal as it can be when you live with a lifelong illness.

Hospital selfie 2019

There’s something so frustrating about losing your sense of independence so unexpectedly.

Unfortunately my life is always unpredictable due to living with this debilitating disease.

It can attack my body at any time, without warning and with such resilience, and this was also the case with Covid19 when it began robbing people of their lives and taking over the world.

I am not suggesting that one is worse than the other, but what I am saying is they are both destructive.

I have nearly lost my life due to Ulcerative Colitis more than once, but the fact Inflammatory Bowel Diseases are less spoken or heard of doesn’t make them any less serious.

We need to release the stigma that surrounds hidden illnesses.

As someone who is looked at as being ‘young, fit and well,’ from the outside, it is important for people to remember that not every disability is visible, and in my case, it is very much hidden beneath the surface.

I may look well from my pictures, but looks can be deceiving.

June 2020

Thankfully I am now on a drug called Humira, which I have to inject into my stomach every two weeks. This is a type of immunosuppressive therapy, which is used to wipe out my immune system, but has bought my colitis under control since December 2019.

If I wasn’t on this medication, I could have had to have emergency surgery to have my bowel removed, and I most certainly wouldn’t be able to exercise and stay active the way I do now.

Injecting myself in the stomach doesn’t come easy to me, it is so unnatural, even now I struggle to just push the needle into the skin – But I know that this is keeping me well, so I have to bite the bullet.

Before Humira, I was on another immunosuppressive drug called Infliximab, which worked wonders for me for two whole years, but unfortunately I developed anti-bodies to it in 2019 and it began to fail.

Following this I went through a period of being very unwell all the time, two bouts of tonsillitis in 2019, both of which I had to go into hospital, I almost had my tonsils removed but they decided against it.

This was all at the beginning of me working in a care home for the elderly, which sadly I only managed six months due to my health.

Then just when I thought I was over the worst, I caught a very serious case of the flu which knocked the life out of me in November, I was in bed for three weeks with it, and also had a sickness and diarrhoea bug to follow, of course this was due to me catching everything under the sun and my terrible immune system not working properly.

On top of this I went into a big flare up with my colitis, which led me well into January 2020, and I went down to weighing just seven stone and became so weak, my family had to be my full time carers and lift me out of the chair as I couldn’t stand up – I couldn’t have got through it without them.

I also had to have a small surgery on boxing night where I had to be rushed into A and E. It’s safe to say I think having endured all of that in 2019, my body is pretty tough, and my mind has had to be even tougher to get through it all.

2019 was not a good year for me health wise lets be honest, but I am grateful I am still here to tell my story.

I was so lucky to have been put on Humira during this time, as it, along with juicing pure raw vegetables gave me my strength back, and now I’m fighting fit again.

In the above picture I had only been out of hospital for two weeks after having a small surgery in December 2019.

How I look is how I felt – exhausted.

I was asked by a fitness brand on my Instagram if I would like to promote their leggings on my page, but as you can see from this picture I captured the moment I was too fatigued to even look at the camera.

I just didn’t realise how weak I actually was until this point.

The whole lead up to lockdown for me was a really surreal and scary time. I had so much anxiety, worrying I would catch the coronavirus and falling into the trap of watching the news far too often, it took over my life and was unhealthy for my mental health, it left me completely on edge, so I decided to stop watching the news.

It was hard enough having to be told to self isolate for twelve weeks let alone having to watch depressing headlines every time I turned on the TV, which would only invoke people with worry and despair.

Hearing so many negative headlines can have a detrimental impact on your mental health.

Sometimes a simple run or walk in nature was enough to clear my head.

Other times, I worked on pursuing my creative interests, such as singing in my studio, writing and creating this blog, something I had wanted to do for a long time.

The fact I was able to exercise so much really helped keep my anxiety and depression at bay, allowing my mind to explore daily happiness more often, and to experience my own escape from the daily struggles of being in self-isolation.

I even turned to baking some chocolate brownies for the first time ever, and trust me I am not a natural baker! I was really pleasantly surprised with how they came out though.

Side note: Dancing in the kitchen with my boyfriend to cheerful baking music on Youtube really was a good mood booster.

They turned out pretty amazing if I do say so myself!

So baking aside, I tried so many new things, but found that what I really needed the most was to be surrounded by positivity and inspirational videos, podcasts etc, so that on the down days, (yes we all have them), I was able to get myself stuck out of my own thoughts.

Mental Health Moments

Being a thinker, this side of me is always something I have had to actively work on.

The self talk, the listening to positive affirmations, being kind to myself when I catch myself thinking negatively, these are all things that are so important to notice and nurture, as if they are not taken care of, they can get out of control.

I am also thankful that I have learnt to be able to notice my own thoughts and feelings through mindfulness techniques, such as meditation, self-awareness and writing a daily gratitude journal, all of which have been great tools to use while in lockdown.

My two journals for gratitude

All though I know I can’t erase the thoughts that come into my mind, I know that I can accept them for what they are and realise I am not actually the thought itself. I don’t allow it to consume me, or get attached to the thought, which before I learnt mindfulness it used to succeed in doing.

I know that negative thoughts come and go, whether it’s feelings of self-doubt, wanting to have more or be more, comparing yourself to other people, thinking your a failure or that you want to be perfect, but here’s the bottom line – Nobody is perfect, and no one is always happy 24/7.

If we can just observe the thought as it passes, like clouds in the sky, then we realise it eventually disappears, leaving room for the happiness to fill the space.

I have wasted some precious time getting consumed in bad thinking habits, and when I realised this I said to myself, no more, this needs to stop.

So now I am a full on enthusiastic, bubbly and positive person, who tells myself daily, I am enough! And you should too.

It is easier said than done when you live with a chronic illness and are in self-isolation, but I was lucky to have my family and boyfriends support close by, there to push me forward when I felt like curling up in bed and watching the days drift by.

I do feel for those people who have nobody close by to help them, or even talk to in this difficult time, because it is such a scary time for us all, and even worse for the more vulnerable and alone.

I did some of the things on the picture below, such as online chat, read a book or write, but I can’t agree with the don’t go out because I had to go for my daily walk or run for my wellbeing, however this was away from everyone so I was still keeping safe.

Reading or writing, even phoning a friend can definitely help with those lockdown blues.

It is so important to speak to someone when you are feeling depressed or lonely, and I know myself how this feels, because living with a chronic lifelong illness is the loneliest thing in the world.

I am still currently in self-isolation until I am told otherwise, until at least August the 16th, where I will be informed whether I can go back to work or not.

But I am busier now more than ever, more productive, more creative and about to start my degree in the Creative Arts industry, as I hope to have a full time writing career in the future – I am really excited to see what is in store for me in the next few months.

Most importantly I am just happy that I am back in remission.

I myself believe that if we use guts not fear, common sense and courage, while in the midst of this global crisis, then we can create a world that is strong, bold and confident, in the face of doubt.

By remaining hopeful I remain positive, in this oftentimes negative world.