Hey there, hi there, ho there!
Hope everyone had a nice break over the holiday period and that you’ve recovered from all the travelling, cooking, early mornings and late nights.
In latest news I’m very excited to announce I have been asked to speak at a medical conference in Manchester this coming May. The conference is to educate and raise awareness of Vascular Ehlers Danlos Syndrome. I am truly honoured to have been asked to address medical professionals from all over the world. It’s a massive responsibility to represent the EDS community and I will do my best to explain the struggles we all face.
Anyway, I just wrote this piece for a bit of a laugh. I’m not trying to be a negative ninny (in case somebody doesn’t pick up on my sarcastic tone), I will get around to writing part two of my trip to London shortly. I know some of you were eager to read about prices and places to stay etc.
Hope you enjoy my latest blog!
One day of fun=several days of a flare up.
You’ve taken your meds, you’re feeling as well as can be. You put on your glad rags and you make it into the car. Even doing that much your energy levels start to drop and your pain levels start to rise but God damn it, your going to this party. You’ve been staring at the same four walls for weeks now. Even if you have to walk in with a cane or arrive in your wheelchair, you are going to spread your wings and be a social butterfly for one evening.
You manage to spend an hour or so catching up with friends while listening to how “you look great and you’d never know you were sick by looking at you” when all you wanted to do was forget you were sick for one night. But getting out is worth being someone’s inspiration porn.
You go home and fall into bed. This is where you stay for the next few days only crawling out to use the toilet or to grab a packet of crackers to stop yourself from starving to death.
You have more sets of PJs than actual clothes.
You spend more time at home than you do outside so it’s only natural you’d spend a lot of time in what you’re most comfortable in. While many of us would prefer to get dressed and glammed up to make ourselves feel normal, others just don’t want to waste energy on putting on clothes and make up. A lot of the time you choose between getting dressed or putting on a load of laundry or ya know, eating?
Hey! If these dudes can walk around in their house all day in their PJs, why can’t I?
Your bed is your best friend and your enemy.
When you’re ill a lot of the time your bedroom becomes your place to escape so that you can rest and recover. Unfortunately you do end up spending a lot of time in bed and sometimes it can be for several days. You can often end up resenting your bed. While the majority of society love their beds, people who are chronically ill associate it with being in pain.
You often develop a less than desirable odour.
When you’ve been in bed for a day or so, you develop a very specific smell. It’s a mix of sweat, anguish and food that you’ve spilled on yourself. Getting up for a shower can be very tough on our bodies. Again, it’s about picking and choosing what you spend your energy on. Bathing or making dinner. The kids have to eat. The smell won’t kill em but starvation probably will.
When you do get round to washing yourself you feel somewhat human again. But then you have to go lie down.
If someone were to shake you, you’d probably rattle.
You can never just have one chronic illness. No, no, no. There’s always a domino affect. Your main illness causes all sorts of weird and wonderful sub conditions. Consequently you take a whole lotta pills to keep yourself functioning. You’ve got one cupboard in your house that looks like a pharmacy, you have to brace yourself when you open it as more often than not, something falls out. People are always shocked to see it and know that if they get a headache while in your home you’ll have an array of pills to kick that sucker’s ass.
A successful day for you is getting dressed and actually leaving the house.
Just grabbing whatever has been tossed at the end of your bed and leaving the house to buy food or collect the kids is enough to gush about when your significant comes home from work. Victory is yours!
You get annoyed listening to people crib about having a cold, going to work or having to go to out socialising with their friends even though they are so00 tired.
Many of us can’t work or leave the house when we want so don’t complain and tell us “I know how you feel” because you have a cold. Difference is you’re going to get better. Oh no! You have to go to a Christmas party? My heart bleeds for you.
You have watched anything worth watching already.
Netflix and chill doesn’t mean the same thing to us. It literally means to binge watch shows while doped up to our eye balls on pain meds. Many of us will tell you we have spent many a day watching OITNB while curled into the foetal position because said meds aren’t working.
Till next time,
5 thoughts on “Being Chronically Ill means..”
Congrats on being asked to speak at a conference that is awesome. I have EDS but most specifically dysautonomia. I have my own pharmacy too! Going out is also similar for me. Not only from what you mention but my adrenaline rushes give me a great time only then to be clobbered massively when I come down off them. Life is one big bloody yo yo!
Amen to that!
I feel you on owning more pajamas than real clothes. And I own so many “athleisure” clothes for when I can’t wear PJs.
I wear a lot of leggings too. I bought some nice ones so that I look less “mumsy”.