Many people have said to me that I should do a post on how to cope with having a chronic illness, and how I manage throughout the bad days, and how I grasp my good days with everything I have. But, if i’m totally honest, I have zero idea how to manage anything right now, even on good days I have moments where I get unbelievably sad knowing the bad is right round the corner again, which is only natural.
But I do have tips and tricks that seem to help me out, but the sad thing about having a random rare chronic condition is that a lot of doctors have no idea what to do with you for the time being, or look very confused when you tell them the long list of what conditions you have *rolls eyes*
There are many things that will keep us going, and many things that make us fall flat on our faces again. I can’t say these tips will help you out, but I can say they’ve helped me.
Tip number 1.
If you’re in pain. If you’re sad. Depressed. Lonely. CRY. GET YOUR TISSUES and just sob!
Don’t feel bad for letting it out, after I have a good cry everything seems less heavy on my chest, some days I’ve been curled up on the floor screaming the house down i’ve been in so much pain… and that’s ok. *i’ve also found that doctors take you more seriously when you cry in front of them. But you also get an awful lot of sympathetic ‘u poor girl’ looks in the waiting area, that are totally embarrassing, but who cares?*
It feels good to cry. Just do it!
Tip number 2 –
This one is actually very important to me. When I was diagnosed with PoTs primarily, I had zero idea what it was. I wasn’t even given a leaflet because they had none in the clinic that day, I just had to undergo lots of weird tests, especially with my joints, and was kept for ages and had no idea what was even going on, I was told to do my own research for now and see my GP to be referred to a cardiologist or neurologist. Great. For a good month I was up in the air and a bit lost, and I didn’t know what spoonie even meant, or what saving your spoons are. It’s the greatest theory you can ever read if you’re chronically ill, and it makes sense, and works.
Tip number 3 – If you don’t have to work right now. Don’t.
I know that this is a controversial one. I know. But in my opinion when you’re chronically ill and flaring up every other day, you never know when you’re going to be fit enough to work, or even function properly.
Before my diagnosis I was juggling Uni and a part time waitressing job, and was always missing Uni and calling in sick to work because some days I literally could not function. Now I am much happier doing my University work from my bed, and that’s all I do. I get by on what money I have from my student loan for basics, like a coffee with a friend, or a night to the pub every so often and I make it work. I don’t really go anywhere anyway 99% of the time.
I’m lucky that I still live with my parents so bills aren’t an issue. But really, putting yourself first is key. Being a spoonie for some people, like myself, is a full time occupation. It’s a disability, and it’s debilitating enough without the extra stress. I’m so much happier, and I have a better mind set for getting better, because when I’m ill, I have all the time in the world to rest, sleep and take my medication, and that’s exactly what I need right now. I don’t need to worry about hospital appointments, if I ever need to stay in, if my medications making me drowsy, etc. If not working at all isn’t an option for you, maybe part time is, or cutting down your hours, because it is true, the more stress we’re under, the worse our flare ups are. But I know that life is always going to be waiting for me. It’s not going anywhere. Take the time you need 🙂
Tip number 4- Join an online community.
Honestly I never thought I would feel so happy to come across another 13,000 people on Facebook who are all in the same boat as me. I mean, I wouldn’t wish this illness on my worst enemy, but it’s always so nice and so comforting to know that some out there gets it. Not only that – they can help you through it, because they get it! Any weird symptoms you post – there’s at least 50 others who are experiencing them, and at least 5 who know how to deal with it or what it is. They’ll help you through any tests your having, again, the majority have had that specific test, and can tell you what to expect. It’s an amazing community to be a part of. All you need to do is type in your illness and there will be a string of support groups available to you.
Tip 5 – Try your best to not be sarcastic on your bad days.
I’ve done this a lot. ‘I understand how you feel Jess’ ‘DO YOU? DO YOU REALLY?’
It just creates awkward tension. I’m not saying you can’t be angry or feel any sort of emotion like that, but what I am saying is that when someone is genuinely trying to help, don’t get too annoyed with them. It’s only natural, but try and cut those responses to a minimum. It doesn’t help them, and it certainly doesn’t help you.
Tip 6 – Be silent when you don’t know how you feel. You don’t always need to be reassuring everyone else around you that you’re coping and you’re ok.
Being away with your own thoughts can be the most beautiful thing in the world. The world is filled with chaos and people who talk way too much on a day to day basis. A lot of the time we wake up feeling the same emotions we have felt for the last 3 weeks, it’s ok to not talk and want your own space and your own private thinking time. I do it an awful lot, and it really does help me out. I love to just lye in bed and think, it can be for hours, or even just 20 minutes, but it helps me make sense of everything thats going on around me, and it helps me get my head around things. Some times when you feel so much pain, you don’t know what to do with it, just lying down and thinking… it can be so peaceful. And so rewarding.
Tip 7 – Don’t worry your little head too much if things aren’t going your way/how you planned them.
The world’s always going to be waiting for you. So is that one person.
Try and not feel lonely. I know… easier said than done. but you have to firmly believe that with everything thats being thrown at you – one day, you’ll have it together. I worried last year about everything, I felt so many different emotions all in one because I didn’t have control of what was going on around me, and it sent me a little insane. Just go with the flow, right now expectation vs reality will be extremely far apart. It doesn’t mean it always will be does it?