I am a daughter, sister, granddaughter, niece, cousin, fiancé, fur mum, daughter in law, sister in law, co-worker, friend – I’m somebody to someone – and yet I’m missing from each of these roles to a certain extent.
There are many moments where I’m an absent from each role in different ways– whether it be not being able to go out with my fiancé often, not be able to spend time with my dog giving her the attention and exercise she needs, it’s also not being able to stay out long with friends, or having to do minimal energy activities so I can last longer. It’s wishing that this illness didn’t have consequences to my actions. There are some days that this illness makes me feel like I’m failing all of these roles. I wish I didn’t have to preserve energy to be at least more present in all of these roles, but it’s the sacrifice I have to make, to ensure that I even remain a functioning human-being. I am lucky that my support group understands that I can’t always be present but it doesn’t hurt any less.
Each year the week before the 12th May, I begin grieving because of the memories I drag back up while writing my blog and sharing my story online again. I grieve because of what my body was capable of prior to this illness and the moments leading up to the official diagnosis. I knew something was wrong with my body because I felt like I had no control of it anymore. I remember how isolated I felt during that time because I didn’t know days like today existed, I didn’t know people were fighting for our health rights, for our voices to be heard. Nor did I have any friends yet who had a chronic and/or invisible illness to talk to. I became very distant from my friends and extended family because no one understood yet that this was an illness I was never going to recover from.
I definitely didn’t accept this idea. I wanted to be healthy again and still do.
Everyday all I wanted to do was stay in my bed because that is where I felt safe – not moving – not hurting myself by waking up the demon. Even minimal activities used to trigger me such as walking a few metres to the bathroom, standing for longer than five minutes made me dizzy and wobbly. Eating became a struggle because I had to chew, I had to use my arms to move the fork – all minor things – but all things that hurt. My glands were so swollen I thought it was lymphoma at one point. But I mostly detest the muscle weakness, nothing worse than feeling like your body is going to crumble beneath you and you can’t do anything. The exhaustion on top of this or triggered by these actions can’t be put into words. The problem with the name Chronic Fatigue Syndrome is it’s misleading because people believe it’s just tiredness. Tiredness can be cured by a good nights sleep – CFS can’t.
They say no one get’s it, until they get it – and I get it.
- I get that my body has limitations
- I get that I have lost some independence
- I get that this illness is still being researched
- I get that this illness is still not believed in
- I get that there is no cure
- I get that there are people who are more severe than I am
- I get that this illness is invisible
- I get that that I will never have a healthy body
- I get that this community has fought to be recognised
I don’t normally encourage myself or people to focus on the negatives associated with illness because it can lead to very dark thoughts. This is the only time of the year I actively let all the emotions spill over me and my crying body because I am justified in feeling angry about this illness.
- I’m justified in wishing that my body worked properly
- I’m justified in crying because I had to leave the party early
- I’m justified in screaming into my pillows because my legs aren’t working
- I’m justified in wondering if this is a life worth living
- I’m justified in wanting more research and understanding into this illness by the medical community
- I’m justified in feeling helpless and hopeless that I’m not who I’d like to be yet.
My reflections on how I am in 2020:
- I’ve been doing physical culture or ‘physie’ for five years – it’s improved my mobility
- I’ve been doing exercise physiology or ‘physio’ for four years – I’ve seen drastic changes in my body’s endurance to activities and an increase in energy levels
- I’ve been working and studying for almost a year and a half – something I wouldn’t have been able to do years ago
- I’m focusing on eating better and losing weight for my wedding in October (albeit if it doesn’t get postponed due to Covid-19)
- Before Covid I was able to work a full day at work, come home, cook, go to the gym and still be able to function – something that was once a dream
- I have a lot of support from friends and family – something I didn’t think would ever happen.
- I have an online support system too – something I’m beyond grateful for as some people I’ve met online have changed my life in ways they don’t know.
I choose to share my daily struggles via different social media platforms although it’s not easy because I don’t know who is viewing it, what their opinions are of my illness and whether I’ll get the understanding I need. But I share it because I don’t want people to feel as isolated as I did when I was first diagnosed. I also share it because I feel that I’m at least helping one person per post.
It’s really important to be kind always – you never know what someone is going through.
If you’d like to learn more about ME/CFS facts, check this website out https://www.emerge.org.au/what-is-mecfs