Posted in Blog

Constantly Ill and Constantly Sick

Howdy! 

I’m sick again, twice now in as many months. Last time it was the flu and now it’s (thankfully just) a cold. 

When I was younger, I used to love winter; I’m a homebody who loves curling up on the sofa with a blanket to watch as many films as I can in one night. I also preferred the winter season to summer because it was a relief from the hayfever I’m tormented by in summer. However, it’s only in hindsight that I realise how little energy I’ve always had in winter, how my joints and muscles have always ached, how I’ve had constant migraines causing “weird episodes”. I’ve always had consecutive colds throughout the winter, but we (my family and I) just shrugged it off as my almost non-existent immune system failing as per usual. 

Since being diagnosed with epilepsy four and a half years ago and realising that the migraines and weird episodes were seizures, I’ve come to realise how difficult winter in particularly is for me. For example, when I say I’ve had two colds in two months, I’m not just talking about sniffles and sneezing for a few days and then back to normal health until the second one hit. The first bout was the flu which of course knocked me out completely but also negatively impacted my epilepsy; I had so many seizures I couldn’t leave my bed for two days. It takes me weeks to recover from episodes like this, so when I’m hit with another cold, I feel like I’m returning to war after a way too short respite.

Thankfully, with this second cold I haven’t had any seizures, which hopefully means that the increased dosage of Lacosamide from 100mg BD to 150mg BD must be working and I’ve also increased my anti-depressants because as well as seizures being seasonal, mental illness is too. With all of these drugs in my system however, I often wonder if standard cold remedies ever stand a chance to take affect? Because they hardly seem to work! So, this time, I’ve indulged in some herbal remedies from Holland and Barrett. On Tuesday, feeling sick of being sick, I visited the branch on Holloway Road on my way out of therapy; I spent a fortune, however two days later I’m feeling more human than I was two days ago, so clearly it’s working!

I bought some propolis and zinc syrup with manuka honey elixir (makes it sound like a potion doesn’t it! But it’s literally just a bit of flavouring), to take 2-4 times a day: This benefits your immune system and is great to take throughout the winter; “Pukka Vitalise” powder, containing a blend of nutrients including beetroot, bilberries and ginseng; and manuka honey 525+ MGO (which was half price as part of the special offer!). Manuka honey has antiviral, anti-inflammatory and antioxidant benefits.  It contains an extraordinary enzyme called methylglyoxal (MGO) and the higher the number, the more effective it is. This higher the MGO the higher the price tag too, which is why it was great that H&B were doing this deal! 

My little life savers! 

I’ve also been taking echinacea extract in its purest form; when your immune system is particularly at its lowest, this is great to take to give it the boost it needs. During the winter, I’m also prone to abscesses which you can take antibiotics for, but mine during the winter are recurring so I’m trying to find alternative remedies to take instead. Then after three days, you can switch back to drinking it in tea form. I also find that turmeric tea helps. 

I regularly take vitamin supplements for my muscles and joints too as well as to help with lethargy: Potassium, VitB12, VitC, VitD, and cod liver oil, and although I can see or feel the effects within myself in comparison to how I was before, unfortunately during the winter I find it extremely difficult to notice the benefits. I feel way older than my years physically during the winter, which of course impacts my mental health and well-being. 

The reason why I’m posting this, is not so that people will call me brave and feel sorry for me; it’s to raise awareness for adults like me who are in their “prime years” silently struggling through the winter because of chronic illness.

We are regularly forgotten.

Society often remembers how the cold affects babies and the elderly, but for people like me in our “prime years”, with a chronic illness, society takes for granted that the cold affects us too. We can’t jump out of bed in the mornings; sometimes we cannot go out too far because the longer into the day it gets, the colder it gets; we can’t go out as often as our peers because our bodies just won’t allow it and we’re not cancelling to be difficult or just because we don’t feel like it because it’s too cold. It’s that we cannot go out because it’s too cold for our bodies to cope; our bodies will just not allow it and sometimes it’s safer for us to stay in the warm instead. 

So please keep that in mind. 

Posted in Blog

“Hope You Get Better Soon”

Get-well-soon
Image source 

It’s funny how whenever I have a seizure most people will respond with:

hope you get better soon.

Although I appreciate the sentiment behind it, I feel like there’s so much to unpack in that statement; what does “getting better” even mean? To me, when you have a chronic illness there is no “getting better” (in the way society expects you to, such as able, fit, full health); it’s not like having a cold, you take a few drugs, drink some Lemsip and in a few days you’re back to what society deems as normal, “better” and back to full health again.

There’s also no certainty that my seizures will become controlled under medication and even if they do, I’ll be on medication for the rest of my life. Is that normal? Is that feeling better, considering the side-effects we experience while on medication?

And what about mental health? Again, when you have mental ill-health, can you ever get back to “normal”? You can restore your mental wellbeing, however along with the stigma of mental ill-health and diagnosis, along with what particular disorder you might have – such as schizophrenia, you might never be deemed normal by society again?

At times I question the sincerity behind the phrase “hope you get better soon”. If it’s a really good friend or a supporting family member, who understands your condition then they just might want you to recover from the seizure and be able to function a little bit better. But others can use the phrase to be dismissive of your condition, especially when you’ve told them that you’ve had a seizure and instead of asking how you’re feeling, they just respond with “hope you get better soon”. See what I mean?

Just a thought.

Sometimes we need to pay attention to the words we’re using and how they might be construed by the person hearing them.

XOXO

Posted in Poetry

Lost Your Mind

You call me angry

When I am actually inconsolable

Broken, inside my heart is crying,

Crying out for love.

You call me aggressive,

When I am actually desperate,

Begging to be heard.

You call me loud,

But you don’t hear my cries of pain,

The agony of my mind breaking into two.

You call me unpredictable,

While others have the luxury

Of bad days and good.

How can I possibly predict

What each day will bring?

You call me fine

And capable of life without support.

Yet, inside I’m already dead,

Because what is living

When you have lost your mind?

© Cece Noel, 2018