Chronic Illness - I've run out of spoons
Updated: Feb 8, 2019
I suffer from a Chronic Illness it's a mix between IBS and Crohns. Let's say while the average person may spend 1.5 years of their lifetime on a toilet (little factoid for you there), my problem you could time by about 4.
This Chronic Illness is a pain in the butt (with pun intended). I'm going to try and articulate for people how it feels. Those with chronic pain and illness will nod while reading and probably have their own horror stories.
I'M NOT LAZY, I'M ON ENERGY SAVING MODE
Firstly those that do have a chronic illness and you have the energy for reading this, waking up and even just sitting in bed or on the sofa hats off to you. I've joined many Facebook groups as I don't have many friends that truly understand this. But the main thing is the lack of enjoyment from life, the more down than highs. Yet we are still there for family and friends. We struggle through some of our toughest moments and sometimes alone, but you know what, you're the heroes, you should be so proud of yourself for the small (or big) things you accomplish during the day.
Secondly, and I guess this is why I'm writing this post. For the people who don't have a chronic illness (relating to mine as experience). For those who can wake up in the morning, drive to work, be in meetings, see friends and family, do things on a whim and feel good about themselves (probably a marginal few for the last one in the list). I envy you every day, see you at gatherings, work, just on the street and I'd love to have a week of your life.
Instead, I don't, I'm exhausted doing the simplest of things, food shopping, work and rarely seeing friends. The best way I found to describe this is the spoon methodology and makes this easier, so here goes...
1 spoon is energy or functionality of a person. A currency some might say.
A normal person with no chronic illness has say 24 spoons. Someone with an illness will have less as half the spoons at taken away so we are left with 12...for the day before we've even woken up. Yep...instant shock and *fist waving in the air...damn you chronic illness and pain.
So then tasks thru the day are taken up..e.g.
1. Waking up and getting ready 3 spoons
2. Driving to work (in my case which is a 35 mile or sometimes 2 hr trip thanks to the M25) would be 4 spoons
3. Work could be 4 spoons - my job is highly pressurised and multi-tasking to the extreme.
4. Driving home from work - only 3 spoons as I'll leave at 6/7pm.
So on an average weekday, I'm over my spoons 1-day x 14 spoons. I only have 12 spoons.
Some spoons I take from the next day as you can imagine by the weekend I'm all out of spoons. So the energy taken to see friends, go to the cinema and going out for a walk, have gone. You lose your identity and turn into a zombie. Some relationships may fall by the wayside as I can't travel during the weekend due to this.
I'M NOT EVEN A PERSON ANYMORE, I'M JUST STRESS & SADNESS
I'm going to admit to you, for the past month I've been getting worse, anxiety and depression creeping in like a goblin in the night. I've wallowed in my self-pity and sobbing most weekends for feeling so crappy. Missing out on BBQs with friends and feeling bad for my partner not having a girlfriend who can do these things. I feel angry with everything, annoyed with the slightest thing. But most of all sad for not being able to live a full life and have the fear of not making it too the toilet, where I have a panic attack and end up not doing the thing I want to do.
When someone texts me or a colleague at work asks how was my weekend, I say "Fine, not eventful", when really, "I was sad and in pain for most of it. I pushed thru to do at least one thing with friends/partner but then I was ill", or a long lost friend say "How are you?" innocent question right?? So I go back "I'm ok", then again I want to say, "Sobbed my heart out at the weekend, and feeling pretty low, sometimes feel like giving up". Not cool and feel like the negative, moany murtle friend that just moans and nags. That's one of the things I'm most afraid of, turning into someone that is sad and down, not happy with a positive outlook on life, but when that blue mist falls over us, hard to pull it back.
I don't expect my friends to wave magic wands and I guess I write this so they understand if I haven't seen them in a while or if I've been distant they know why. I remember seeing that quote about Eyore and the fact even tho he turned down invites his friends still invited him to parties.
There are a few things that Chronically Ill people want to get across and may not get to express this easily but also don't want to seem like they are having to justify or de-value what they go through to explain themselves...
1. We want to go out, laugh and see our loved ones...but sometimes the spoons run out and we can't lift our pinky finger as we are exhausted.
2. Don't forget to still invite us and sometimes we might push ourselves to do things as we are sooo fed up with being ill all the time.
3. We zone out sometimes, we might go quiet for an hour while we will our mind and body to hang in there for a few more hours while at a party. Or...
4. We might only go for a couple of hours and leave early just because we push to the point of no return.
5. We sometimes just need someone to say "That sucks". I love this clip from Parks and Recreation, give it a watch, will make you laugh! You might have heard of a fantastic new drug /guru or cure but sometimes we are not in the mood to hear it, just cuddle us or affectionately listen to us. sometimes no words are the best words.
I also have some advice to Chronic Illness suffers...which I've experienced and you may take this advice or not...
1. Don't be afraid to wallow and cry - for a time. You need to get it out of your system...Or you will get upset when you least expect or don't want it to happen. (like me while talking to a colleague at work! Genius!)
2. Try not to take your frustrations out on your family. If they are trying, but not in the way you want them to. Tell them where they can support. Communication is key. (I decide to write a blog for people to understand - shrugs shoulders lol)
3. If you lose friends or people get annoyed with you in this situation, fuck them!!! Life's to short to have toxic people in your life, I mean we have our own bodies we have to fight with our energy, don't waste your precious energy that's left on people that aren't understanding or caring!!
4. Try alternative therapies, this may help you. e.g..
- reiki healing
One I do and can testify to is homeopathic and you can go to most good health stores. I called Holland and Barrett and got some great advice. I've been trying magnesium oil and it's been going well. i feel more stable and less crazy lol.
There's probably tons more you can do and research
5. Support groups - either through the charity for your problem or go on Facebook there are a good few a Chronic Illness groups and you get to see your not the only one feeling that way. Makes you realise either, people can have it worse than you, but mainly your not alone. There are people out there wanting to help.
So my last word is that not every chronic illness is visible and everyone is fighting their own battles and demons. Love more, listen more and care more. Even to people, you don't really know, that act of kindness could have a profound effect.