The doctor once asked me to shade in the affected areas on a piece of paper with an outline of a person on it. A simple task if I were seeing him for an injured ankle or back pain. For my situation this task was quite difficult. Did affected mean just the numbness? What about the pain? The weakness? The terrible cognitive processes? I could have used every colour of the rainbow (pun intended) to demonstrate the different effects on different areas. But I wasn’t given a packet of coloured crayons, I just had one blue pen and one outline of a body. Why wasn’t my verbal communication enough? Why did I, a perfectly spoken adult, have to illustrate my situation on paper with this stupid blue pen? I literally ended up colouring in the whole figure because when I think about it, my entire body is impacted by this.
While the rest of my blogs have more of an emotional focus, this one aims to help others understand exactly what is happening to my body. My reason I think this is important is so people can really understand what I am overcoming and how difficult my day-to-day has become. There may be mention of a few of my symptoms throughout my other blogs but not to the extent of this.
When I describe my situation to most people I often just say I’ve lost majority of feeling in my right side – face, arm and leg. While this is true, it doesn’t even come close to explaining what I’m experiencing. My right side is by far the worst affected of all my body. At all times I probably have between 10-20% feeling on that side. However, at any time any part of this side can go completely numb without any warning. As well as being numb, my right side is stupidly weak. Holding my phone up with that hand is even too heavy. I also get pins and needles regularly on this side. Sometimes these pins and needles are gentle – almost tickling. Other time it feels like I’m crushing glass with my hands and feet; it’s so painful I could cry. The right-left side divide can be best explained by my tongue – sometimes my tongue feels like its split in two and only the right side will tingle. Ever had pins and needles in your tongue? No? Try having it only down one side. It feels just as bizarre as it sounds. The right side of my face feels like it is sagging and on a bad day I can actually see this. My mouth sits lower and my eye blinks slower. Because of this it actually takes a fair amount of effort to talk and use expressions when I’m feeling particularly tired. If I’m sitting there in silence – it’s probably because I can’t be fucked using the little strength I have to make conversation.
The left side often gets forgotten because my right side is so fucked. My left side is probably running at about 40% of what it should be – on a good day! I struggle to carry more than a cup of coffee in that hand. I used to measure my spending’s based on how many coffees I’d have to sacrifice to buy it – for example, ‘that shirt is $25, is it really worth missing out on five coffees to buy it?’ The answer was mostly no but I’d buy it anyway and never sacrifice the coffees. Point of this aside is that I never imagined my strength would be measured in how many cups of coffee I could carry. After extensive use of my left limbs, they will become just as bad as the right – sometimes worse. Extensive use can just be standing for a few hours or using my phone for a while. This kind of use also brings on the pins and needles. So yeah, while my right side is far worse, the left side bloody sucks too.
My body as a whole lacks coordination. For example, I was trying to be a cute, supportive girlfriend and wipe a tear from my boyfriend’s cheek – and I ended up poking him in the eye. Real comforting – you’re crying because you’re sad, so I’ll just jab your eyeball to make it water more. At the nail salon I had a break down one day because I couldn’t get my hand into the little UV light dryer thing. I fucked up all the nail polish and the lady had to guide my hands in there for me! Talk about embarrassing. I also get uncontrollable twitches and tremors in random places which doesn’t help this issue.
As a whole, my body feels like it is heavily weighted and moving it is just too much effort. It requires far too much strength but it also requires a decent amount of thought. A simple task such as scratching my nose calls for my brain to ask my hands permission to scratch it and time for my hand to think about it and then agree. I need to do everything slower than normal or else I will get super dizzy and lose my balance. I also occasionally get hot flushes which totally stop me in my tracks. Seriously, I really feel for anyone experiencing menopause right now because that shit is just ridiculously uncomfortable!
And let’s not forget about the pain. Back pain so bad it makes me cry has become a regular part of my day. Yeah I spent most of my time lying in bed but I can guarantee this isn’t relaxing. When your back is constantly on fire and it hurts to even breathe, there’s nothing ‘relaxing’ about it. It also shoots up my neck and occasionally down my arms. I also have a headache 90% of the time – but it is mostly on my right side. These things keep me up of a night most nights – despite my ridiculous fatigue.
Which leads me to my next point – chronic fatigue. I probably had to take 7 naps in between writing this post! In all seriousness – I’m always tired. If you’re thinking right now ‘yeah I only had a few hours’ sleep last night, I know how you feel’ just stop. This is tired like I’ve never experienced before. I wake up tired, I live my day tired, I go to bed tired; I never stop being tired. I don’t remember what it feels like to have energy. I literally feel out of breath just from typing this. I can sleep 12 hours’ of a night, take three or four hour or so long day naps and still be exhausted – to the point I can actually fall asleep mid-conversation. I wake up with a very tiny amount of energy if I’m lucky but it just takes me getting dressed to use it up. I get puffed from a short walk from my house to my car in the driveway! So when I tell you I’m exhausted – please don’t respond with ‘me too’ because unless you’re suffering from chronic fatigue you have no idea what exhausted is. Believe me – when I was well I was working three jobs, studying a double degree of law and psychology full time, going to the gym, dancing and getting drunk with friends every night – I’ve been a ‘normal persons’ tired and it does not even begin to compare to this, not even in the slightest.
My brain function has also been affected. In my last semester at university my grades went from a distinction average (80+) to me actually failing some of my classes which has never before happened in my life. This is with me putting in just as much time and effort – if not more – than the semester prior. In my every day, I have the same conversations with people because I forget I asked them that question 15 minutes prior. I often have to stop mid-sentence because I’ve forgotten totally what I was talking about all together and I stutter and struggle to string a sentence together sometimes.
I have good days and bad days – sometimes my symptoms are worse than explained here and other times they are better but for the most part these symptoms are average and are experienced by me all the damn time.
So basically, my whole body is fucked up. There isn’t an inch of my body that feels the same as it did before. I am literally experiencing life with a whole new and not-so-improved body. I have to totally readjust and change my entire lifestyle. While this post does feel a bit negative – it’s not. This post for me just proves that I am such a warrior. If my body can be going through this many hurdles and at the end of the day I’m still happy – I’m damn proud of that. This post just shows that I can take on anything with a positive outlook. If I can go through all of this daily and still smile – I believe you can also beat your problems the same way. Whether you’re going through medical problems or otherwise, take a second to appreciate your strength. Be proud of how far you have come and have faith in how far you will go!