Poetry – Looking Glass

Recently (well, always really) I’ve been struggling with how to deal with certain emotions that come with trauma and pain. I used to love writing poetry, and so I thought I would process everything this way. I wrote my first poem in hospital this week and thoroughly enjoyed it, finding it therapeutic to release what I was feeling in an artistic way. I hope you enjoy! Here is my first poem:

Looking Glass

There are cracks in the mirror.

The looking glass self, in smithereens.

The looming shadow, the interferer

Stealing fragments of resolve in my genes

A chandelier with flickering light,

All the sparkle and glimmer on the surface, alas under

The true candescence in sparks, fight and flight.

Until beads smash to the ground, resolute thunder.

Now the parts of me are separated, speeding away

Time to mend again, but I will never be the same again

Maybe change these beads. A new centrepiece from today.

Make people believe it was intentional, every now and then.

My First Year at the University of Greenwich with Health Difficulties, A Review

In my first year of university, I have had many challenges. I struggled to see an end to some of the more punishing health battles I went through, but I persevered.

At the start of university, I had a pain flare, which led to me attending university doped up on morphine. My energy levels depleted quickly, so I was always pretty drained.

The new year brought problems with my mental health, as I was put on an antidepressant I did not agree with. As you can imagine, having chronic pain and not feeling yourself mentally is challenging to say the least.

Following this, I needed surgery, which left me out of classes for three weeks in February.

In March, I started to have seizures for which I was hospitalised frequently.

Throughout this, I kept going, with the end goal in sight. I did not for one second want my health to prevent me from doing well in my studies. With the help of amazing, incredibly understanding lecturers, I managed to only have one extension throughout my assignments. They were caring and sympathetic in regards to me needing to have time off, and my personal tutor even phoned me when I was absent due to seizures. I dropped into her office several times throughout the year for chats about university work, my health and anything else that was particularly challenging at the time.

I also received free weekly counselling during my first year at university, which was a great help. It was important to be able to verbally process my thoughts and challenges but to also recognise my triumphs in these sessions, both big and small. I feel that they were very productive in aiding me to be able to cope with my studies in first year.

I also received support from many friendly faces in STAART, which I have talked about in my previous blog post: https://louisefrancescablog.wordpress.com/2018/01/15/my-first-term-at-greenwich-university-london-as-a-disabled-student/
It has really helped seeing other students with health struggles achieve what they set out to do, reassuring me that health should not be a barrier when it comes to thriving at university. Through STAART, I have made very close friends, with whom I can vent and laugh about the struggles we go through.

Being an AccessAbility Ambassador at the University of Greenwich has also boosted my self confidence. I have worked shifts with fellow ambassadors, reigniting the part of me that loves to work and making me feel comfortable doing so despite my challenges. At the University of Greenwich, everyone understands if I need to take breaks during my shifts due to my conditions. I feel that it’s a great transition from not being able to work to hopefully having the career I am studying for upon graduating in a couple of years. I am incredibly grateful to the university for providing me with this opportunity.

Because of all of these elements of university life, I felt capable of ploughing through my first year despite the difficulties I faced. I worked as hard as I could, when I could. My last exam was two days after I’d spent the night in hospital, but I wasn’t going to miss it. I had reassurance from the university that if I didn’t get the result I wanted in my exams, I could resit them in the summer. This was reassuring, but I wasn’t willing to quit just yet. I managed to complete both exams. one being two days after I’d spent the night in hospital.

When I saw grades in the summer, at first I was in disbelief, it felt surreal. I finished my first year with a 1:1

If I can do it, I’m sure you can too. If you are considering doing a degree that is offered by the University of Greenwich (especially if it is Sociology!), I would recommend coming to an open day or enquiring via email. The contacts for STAART are on my last blog post that I linked previously.

It’s not so bad being a spoonie in uni!

Pill Shaming and Why it’s Not Okay

The judgment of when we need pills in today’s society is, from my experience, distorted.

Let’s start with the common misjudgement of people who take opiates for chronic pain. They are often assumed to be addicts simply because this type of drug can be addictive for some, not all. It’s interesting that this stigma is rarely attached to someone purchasing a lot of alcohol despite the rising trend of alcoholism in today’s society. I was once taking oral morphine on prescription during a physical health relapse. I don’t think I’m overanalysing the situation when I recall the way I was given the prescriptions in a rather insensitive way compared to my other medications. Maybe a twenty one year old taking morphine is so uncommon that people, including pharmacists, are instantly suspicious of your intentions with it?

Besides opiates, it seems to be the common misconception that taking drugs for long standing illness (to function to the best of your ability) makes you weak. That, or now that you’re functioning well, people think the next step is to lower your dosage of the drugs that are helping you. I feel that this is due to scare mongering news articles depicting the potential ‘dangerous’ side effects of these tablets, but not the improvements they can make to somebody’s quality of life.

It seems to be the same situation for drugs used for both physical and mental health conditions. There’s a lot of ignorance in society (and online) insinuating that somebody’s lifestyle is the only thing preventing them from leading a mentally stable or pain free life. Yes, factors such as diet, exercise and social interaction can help a lot of different people in many different ways. Alas, they will not ‘cure’ me or many others of very real underlying health conditions. It is often medication that actually makes things such as exercise and social interaction more possible.

I’ve personally found a trend in certain people’s reactions when it comes to me taking medication. When my symptoms become unbearable to function with, people seem keen for this to be ‘sorted out’ in any way possible, including medication. They are not keen however for me to stay on the medication long term, even if it is keeping my symptoms at bay/bearable. I’m often asked whether the doctors are going to reduce my medication, to which the doctors say no because of the improvement in my symptoms.

So, why did taking medication even come to be a bad thing in today’s society?

– As I mentioned previously, there are several scaremongering articles in newspapers, websites, etc that contribute to society’s view on depending on medication, generating unnecessary fear across all age ranges. What people maybe don’t take into account is that articles are supposed to be thought provoking and controversial to grab the reader’s attention, especially tabloid newspapers.
– Lists of potential side effects can scare people into thinking that medication does more harm than good, when the reality is that a lot of these side effects are rare, and everybody responds differently to different medications.
– Most people who don’t suffer with long standing mental or physical illness are most likely used to taking pain/anti psychotic medication very occasionally and only for a short amount of time. As a result of this, they may not understand why some people need them long term. This may be why some people see relying on medication as ‘weak’ because they have never had to do so themselves.
– This leads to the next point which is that when people see us doing better, they may not realise why we still take them. It’s easy to them to forget just how challenging life would be without the medication. For those of us who have struggled or endured an injured quality of life with mental or physical health, it is almost impossible to forget the contrast.
– The word ‘pharmaceutical’ is often associated with money and business. What is integral to remember s that pharmaceutical companies simply manufacture the medication for profit. It was scientists who originally developed these drugs. Their best interests were advances in science, healthcare and the wellbeing of people, not profit!

Why is pill shaming harmful?

Pill shaming is harmful to patients because there is already enough stigma surrounding physical and mental illness. Trying to dissuade somebody from taking medication that helps them can be harmful in that it can induce feelings of shame and/or guilt. Opiates are becoming increasingly difficult for patients with chronic pain to access because of society’s stance that it’s an addicts’ drug.

If you know anyone that takes medication for any reason, please take into consideration the points discussed in this article.

If you are somebody who takes medication, I hope this helped you to understand that you should never feel guilty, ashamed or weak for doing so.

Brain Fog.

Hello to you, I hope you’re doing well. If you’re reading this to learn about brain fog then great, thank you! If you’re reading this because you also have brain fog, I hope this post will somehow assure you that you’re not alone.

I was not supposed to be writing about brain fog today. I have seven posts planned about various different things. However, I just can’t shake off all of the noise in my head and I know that writing about things helps me. Not only am I getting it off of my chest, I’m reaching out to others and creating something in the process.

So, why do I have brain fog? There are many causes including: stress, depression, medication, chronic pain and more. I sufer with chronic pain and depression as long standing conditions that probably won’t go anywhere any time soon. My chronic pain is believed to be life long. For these conditions I take a lot of medication including benzodiazepines, sedatives and anti epileptic drugs (note: I do not have epilepsy).

Why do these factors in my lifestyle cause brain fog? Well, brain fog itself is a ‘state of mental confusion, detachment and forgetfulness’ (reference: dictionary.com). These are symptoms of depression alone. Dissociation and depersonalisation can make you feel somewhat detached from reality and ‘on the outside’. Dissociation can be the brain’s way of coping with depression by cutting off from the world completely, as to avoid facing one’s causes of depression (from what my doctors have told me. Many of my drugs are believed to cause confusion, forgetfulness, fatigue and more). These all exacerbate my brain fog but can be the sole cause of it for other people. When it comes to chronic pain, that in itself is draining. Your brain is so focused on dealing with your body dealing with constant pain and trying to cope with it that other things don’t get prioritised.

What is brain fog like for me? Ok, so, the issue with brain fog for me is that it never goes, and I never feel like I’m on the same wavelength as people around me. I can thank someone for a cup of tea then two minutes later apologise for not saying thank you (yes, this actually happened). I can get stuck on basic maths because my brain will suddenly go blank – this actually happens quite a lot. I don’t understand the punch lines of jokes as quickly as other people and I’m constantly going into a blurry ‘daze’. My partner will catch me staring into space and it’s simply me trying to work out something pretty simple in my head. Because of brain fog simple thought processes don’t always happen as easily as they should for me.

Do you ever get a break from brain fog? Sometimes your mind can feel clearer than others but I honestly have no idea how or why. The brain fog never really goes though. For me, my mind is either manifesting itself with thoughts as to how I can be more mentally alert and able, or it’s numb. Both of these are just as bad. Being numb and detached with everything going over your head can make you feel less human and like you’re not experiencing life the way you should. On the other hand, having your mind constantly analyse everything trying to work things out can be ridiculously frustrating.

What makes brain fog worse? Although I don’t know what makes brain fog better, I do know what makes it worse, for me anyway. Doing a lot physically can wear me down with my brain trying to support my body’s pain levels. Sleep doesn’t necessarily make up for this though. A major thing for me that makes my brain fog worse is when I’m not allowed into certain discussions or conversations, making me feel even more detached. Worse than that though is when people ridicule you for forgetting things, making mistakes trying to do something seemingly simple, or for generally being slow. The thing is, because of brain fog I may seem like I’m happily in my own world, but I’m not. I feel embarrassed and ashamed for not understanding things as naturally as others do, and this is why my brain is so noisy all of the time. I know that I shouldn’t feel ashamed, and others remind me of that all the time. One comment calling me ‘useless’ or ‘too slow’ can set my brain off into a frenzy of why it can’t be good enough, which in turn makes stress worse and feeds the brain fog even more.

When all of this was getting to me last night, I did a bit of writing about how it feels for me to suffer with brain fog. It’s a metaphor to demonstrate how isolating and frightening it can be. I’m sure I’m not the only one who feels like this. Here is what I wrote:

‘I am like grass. I envy the fruitful, vivid flowers around me. I’m not the centrepiece in any garden. Even weeds flower. Even weeds attract beautiful bumblebees. I don’t attract people unless it’s for them to pick at me or lay above me. Sometimes it’s fun to watch them dance and play, but it hurts and I quiver at the thought that I am still just grass. As soon as I start to grow tall, I’m cut down again and left sore. That, or I’m turfed out, sometimes even relocated left messy and out of place. I guess grass is necessary though, to make others look brighter, to level out the bright from the dull.’

Yes, that is rather depressive. I know that my brain fog doesn’t make me any less worthy of joy or contentment than anyone else, but when you feel so isolated because of it, this is how it can make you feel. Less human, less included, and less capable. To clarify again, I know this is not the truth, but it’s an insight into what I often feel as a result of this one symptom combined with depression and chronic pain.

I hope you enjoyed my little ramble on brain fog. If you can relate let me know or share this with others to spread the word!

Louise