I wanted to share this picture taken last Thursday evening with you all. Not for the purpose of ‘oh look at me’ but to simply give you food for thought. This is me albeit appearing somewhat physically different than my usual unkempt appearance. I am wearing a full face of makeup, added some fake tan to my skin to at least give the appearance of health and my hair is styled, yes even the curling tongs made its annual appearance! I am also dressed in clothing, fancy fashionable clothing that is far from my usual attire – I’ve become quite accustomed to my beloved pyjamas! This image providing a stark reminder of who I was before I got so sick, always groomed, feminine and taught to always leave the house looking my best no matter how bad I was feeling. I put incredible effort into my appearance and clothing on Thursday evening. I selected each piece of clothing with great care whist also listening to my body’s desire for comfort. My body has changed. It is different and much more sensitive to its surroundings. I have become an expert at compromise. I can still wear pretty shoes but they now have to be flat. I can only wear trousers as I need to conceal my ghastly skin rashes and most importantly I have to wear layers of clothing so I can somewhat control my out of control thermostat.
For anyone who doesn’t know me and is seeing this picture for the first time would assume I looked the picture of health. That is the crux of this post, for all of you that do follow me will know that this could not be further from the truth. What you don’t see in this picture is the pain, exhaustion, frustration and my illness. There are people out there like me who could be co-workers, strangers we pass in the street and even people who live in our very homes that are also battling an invisible illness. They may appear fine even ‘normal’ on the surface but the real damage lies behind this facade. It’s when you look past the exterior surface that you can see the deadly implications chronic illness has on people. The best analogy I can give is the orange in the music video by No Doubt called ‘Don’t Speak’. In the video the beautiful Gwen Stefani can be seen posing with a fresh, juicy and flawless orange. Later on it zooms in on this orange where you can clearly see it is rotting away inside. In some ways that is what an invisible chronic illness is like. The outside surface of the body may appear healthy looking but once you delve past the physical barrier of the skin the destruction and devastation becomes apparent.
What I didn’t mention about last Thursday was that it took me days to prepare myself in order to be able to attend the events. I barely slept the night before with the nerves. It took me hours on the day to style my hair and do my makeup. I was exhausted even before I set foot outside the front door but I felt pretty. It was a miserable rainy evening but I was determined to not let it get the better of me. We planned on driving in to the events anyway but traffic was that bit more crazy because of the heavy rain. I kept my cool and was very grateful for Kev to drive in. He drove to the closest car park he could physically get and linked my arm as we made the short walk to the first event. When we arrived at the venue, Kev took a step back and let me lead the way. I got my picture taken, mingled and listened intently to the product presentation all the while holding back tears of pain. My body just wasn’t playing ball and I experienced unrelenting pain. Even though I was in agony I still kept a smile on my face, listened intently and felt very appreciative of being invited to such an event. After a good hour I had to make my excuses and leave as I still had the beauty blog awards to attend which was being held on the other side of the city. Once again my private chauffeur Kev drove to another car park, one that was closer to the next venue. Again I held on to him for physical and emotional support, held my head high and fixed a smile firmly on my face. All I could do was grin and bear the pain that I encountered with each step I took. I managed to mingle with fellow bloggers and companies and even managed a selfie (see below). We arrived just in time to get a drink, locate a seat and listen to the awards being given out. The pain kept getting worse and worse so we waited until all the award winners were announced to leave. I would have liked to have stayed longer and caught up with some other bloggers but my body was calling the shots and it said go home. It is now a week later and I’m still in incredible pain. The past few days were spent resting and trying to sleep. When the pain levels get so bad I just can’t sleep which creates a bit of a negative cycle.
Ok, so you may be saying, if she is in that much pain why doesn’t she take pain medication to alleviate it? Firstly, the simple neurofen won’t even touch the pain so are obsolete when it comes to this. I have actively avoided heavy duty pain medication for a few reasons. One, being the previous damage done to my liver. I have to be very careful of any medication I take and need my liver constantly monitored. Two, my immune system is tanked and my body is having a terrible time tolerating the full list of medication I am already on. I don’t want to take something that could put further pressure on my immune system or body. Lastly, I don’t want to become dependent on pain medication. I know of others who have, so it really is something I don’t need added to the mix. However my consultant is experimenting with different types of pain management. Some is medicine based and some is more physical.
It was an extremely hard decision to make and one that has been met with fierce trepidation in my house but I got a wheelchair. The reasoning behind this is to help me get out more for longer periods of time. It will help retain my vastly depleting energy levels and hopefully reduce pain and the payback afterwards. It is beyond frustrating to be kept up in doors all of the time. How I miss being able to go for a nice walk in the botanic gardens or browse the shops in the likes of Blanchardstown shopping centre. For me at the moment the most walking I can tolerate is 200 meters about once a week. The wheelchair is there for the times I want to get out for longer. I can walk a little then get in the wheelchair for the rest. This will really help build my confidence back up and cheer me up in the process as it means I can get out, see and do more. It hurts that not everyone sees it that way. I’m now understanding the true stigma associated with disability and of having a walking aid. The worst is when it comes from your family who should be the ones supporting you every step of the way.
I wanted to share this in-depth post with you to encourage you to open your eyes that bit wider, learn to see past a person’s appearance and to be mindful of others. Not all illnesses are physical or in the least show any great physical indicators that a person is very ill. Even though some illnesses may appear invisible and I use that term loosely, it doesn’t make them any less validated. These illnesses are very real, impact life like you wouldn’t believe and are fatal too. I have learnt whilst being ill and by taking a step back to listen to the words a person doesn’t say. Some people may not be vocal about their illness but that doesn’t mean it’s not there and that they are not suffering. If you read between the lines you will see their suffering. The same applies to people suffering with mental illness. My message to you is simple be kind to others and be open-minded. Sometimes there is simply no one shot cure or treatment but it helps so much to have people around who don’t pass judgment but simply support.