Let me tell you exactly what it’s like being chronically ill…
First of all I’m going to explain to you what it’s like to be chronically fatigued. Fatigue is not just tiredness. Fatigue is like being tired times 1,000,000. Fatigue is where you feel physically and mentally exhausted. Sometimes too weak to walk. Fatigue is sleeping for 14 hours and waking up and still being exhausted. Fatigue is something that no amount of energy drinks, pro plus or numerous cups of coffee will help. Most people who have a chronic illness are not only battling their illness but are also battling extreme fatigue. I battle fatigue every day, recently it’s been the worst it ever has. I usually exercise at least four times a week. The past few weeks I think I’ve been to my fitness classes 4 times. The other day I was popping to the shop with my other half, I was walking down the two steps outside my house when my legs nearly gave way underneath me because I’m so exhausted. Fatigue is a total and utter bastard! It’s something that almost always beats you. It’s not as easy as, put it in the back of your mind and get on with your day. Most of the time, that’s just not possible.
It’s now April 2017 and since the new year I’ve had 4 hospital admissions. I’ve been fighting for the past four months with my IBD consultant because he hasn’t been listening to me and hasn’t been looking into why I keep being admitted into hospital. So not only have I been battling my illness, I’ve also been battling with my healthcare professionals. Each time I go to hospital, my symptoms become more and more severe. Last time my veins shut down, my bowel stopped working, I was constipated beyond belief, my inflammation markers in my blood shot from 6 to 91 in 12 hours, I was on IV morphine, things really weren’t great.
Since leaving hospital the only thing that has improved is the severity of the pain.
Having a chronic illness is a constant battle. You have to battle through your day, battle with your own body going against you, battle with medical professionals, fight to get through work, fight to get out of bed, you get the picture. Nothing is easy. I feel constantly guilty on the my family because of how often they have to take me to hospital, because of how often I have to let them down and because of how much I have to rely on them. I feel guilty on the few friends that haven’t turned their back on me because I’m so poorly I barely get to see them and when I make plans 9 times out of 10 I have to take a rain check. Most of all I feel guilty on my fiancé. He has to fight this with me every single day when really it’s not his fight to fight. He sees me every day, he sees how badly it’s effecting me every day, he has no choice but to be my carer as well as my partner. He’s the one that usually has to rush me to a&e in the middle of the night when he has work the next day he’s the one who spends most of his spare time at home with me because I’m too ill to go anywhere, he’s the one that mostly only sees the worst side of me because I’m so exhausted and grumpy to make an effort in anything. I’ll stop listing everything now otherwise we’ll be here all day.
Basically without him and my family, I’d have probably ended it all along time ago.
Being chronically ill makes you realise all that you took for granted when you were well. Being chronically ill sends you through some really dark times. It makes you depressed, gives you anxiety, makes you frail and makes you want to give up.
Being chronically ill is feeling sick almost constantly. Being chronically ill is eating a lovely meal that sicking it back up 10 minutes later. Being chronically ill is not being able to eat a nutritious meal because it sends you’re stomach into spasm and you end up being in agony for hours after. Being chronically ill is eating dry, bland food with no nutrients.
Having crohns is… fortisip. 😷
Being chronically ill is hard.
Your body fights against you and constantly lets you down. Imagine trying to improve something when all it does is is the complete opposite of what you’re trying to achieve. It’s exhausting.
I’m thankful for being alive and not being as poorly as other people. I’m thankful for the support off my family and jonny. I’m thankful for the few people who haven’t had enough of me and are patient with me. I’m thankful for the people I don’t have to see everyday or have in my life everyday but who are still there for me. I’m thankful for my dog. He’s super loyal.
It’s the little things in life. Don’t take anything for granted!