*we interrupt this challenge for a small rant and a HUGE thank you*
When I agreed to do this Challenge I agreed to write for 30 days, I agreed to answer questions set to me, I agreed to be real, I agreed to be honest. I knew it would be hard to write, physically and emotionally. I knew it would tire me, I knew I would feel sad, I knew I would cry. I also knew that I would get to see all the positives that came out of my chronic collection and that these would inspire me with love and hope. I knew I wouldn’t always get positive feedback; this is the internet after all.
What I didn’t know it seems, was that this negative feedback would come from old friends. What I didn’t know was that they think of me as a “victim” of my disease that moans incessantly about it, even though I only started taking about it 15 days ago. I am NOT a victim of anything, I am still here. I did not lay down and accept my life as it was when I was at my worst. I fought tooth and nail for the quality of life I have now, although it’s not much, and crap compared to normal, I FOUGHT to get here, I am not a victim. Because I am physically incapable of doing somethings, because I cannot go out socially, because I cannot work outside the home, do not mean I have become a “victim” of these illnesses. It is NOT A CHOICE, I physically am not well enough to do those things, dont you think I miss them? A victim would not make the choices I do, schedule their life like I do, pay the payback I do so that I can leave the house of a couple of hours. A victim would lay there and take it, give in. I am not a victim. I am sick, ill, disabled, unwell, chronically ill, however many other adjectives would you like, but I am NOT a victim.
Having this feedback led me to pop a post up on my personal Facebook profile explaining how to not see my blogs if they were annoying people. I explained briefly that I was upset, not that I had had negative feedback but it was the hard hitting, crushing kind (as I literally fight my arse off every day to not become a victim, as that would be easier and to not moan as it could be so much worse) and it came from people I once called friends. Finally I mentioned that it is views like this that prevent chronically sick people from telling life like it really is, prevent them from reaching out for help and support when they need it.
It turns out this simple post restored my faith in humanity. Thank you to each and every person that left such nice comments, that told me I had opened their eyes, that they didn’t realise what my life was like behind closed doors, that told me I was doing brilliantly at raising awareness and not to stop. Thank you to the friend that told me I had given her family hope when her husband got CFS, that through talking to me she knew how to explain and manage the condition. Thank you to each and every one of you. It was so kind and so unexpected. I will complete the 30 day challenge and see how I go from there, but they made be realise it was worth all the blood, sweat and thousands upon thousands of tears I have put into this. Thank you. These diseases sure do help you to find out who your friends are.
And that leads me onto day 15 of the challenge:
What would you say to someone newly diagnosed with this illness?
I’m going to bullet point this, because I’m tired and today has screwed me physically, mentally and emotionally.
- You find out who your friends are. People always say this about chronic illness but it seems they say it because it is true. That has become very apparent to me today. Those friends that stick around, that want to know more, that ask how they can help, those friends will never leave you. Trust those friends, open up to them and accept their offers of help. It’s hard but do it, trust me just do it.
- Relationships with chronic illness are HARD. But if you have someone that will stick by you, through think and thin know that you have nailed the relationship game. It’ll be hard, you’ll feel like a burden, they will be tired and stressed but love will get you through. If you can get through chronic illness together you can take on the world.
- Family. Having a family, raising a family is more than possible. You learn to manage your life and your condition, it’s hard, it’s always hard but family is the thing that gets you through. Not just children or significant others, but parents, brothers, sisters, aunts, uncles, cousins, everyone. Family can get you through the darkest of times.
- Medical stuff. There’s no reason and no cure at the moment. Speak out, help to raise money for research. Make a list of doctors that take you seriously and are ready to work with you, stick with the doctors on the list. Take help from OT’s and Social Care, accept the equipment, forget the stigma, it gives you freedom and independence.
Although there is likely more I am too tired today to think of more. So if you have a chronic illness please comment below with your advice to the newly diagnosed spoonies of the world.
I will end on one more peice of advice.
- It’s going to suck but look for the positives, for the things to be thankful for, cling on to them and let them get you through. Because even in the darkest of days there is always a little ray of light, something to be thankful for, you just have to look for it.