I’m sat on the sofa and all of a sudden, I can’t feel my legs. This is a regular occurrence for me. The exhaustion engulfs me, the simplest things overwhelm me.
A lot of the time its all about riding the waves, its about trying to find things you can do whilst unwell. Its about having a nice day out then needing to rest for a week. I’m 22 years old and a lot of the things I used to love to do, I can’t do anymore.
I feel like a burden a lot of the time because I can’t do the things I used to do, the things I so desperately want too but my body just can’t cope with. I try my best, but sometimes it just doesn’t feel like my best is good enough.
I am wheelchair bound. My flat is too small for me to use my wheelchair indoors so I have to bum shuffle around. Its so exhausting, but I do it anyway because I refuse to lose any more independence and put more work on my carer.
I get so many different reactions when I’m out and about. I get dirty looks, stares and looks of pity.
I do not want or need people’s pity. I am still me, I just need extra help to do normal everyday things.
Here are some of the things I wished people understood about my chronic illnesses.
1. A good day doesn’t mean my symptoms have gone away.
I am still in pain, I am still exhausted. I am just better able to function. Or I am able to push through the symptoms. These good days are less often now.
The prospect of being unwell for my entire life, is terrifying. I don’t know when I’ll have a good day, when I do I just have to grab it with both hands and make the most of it. Although, the good days always lead to a flare up as I do too much thinking it’s okay.
I have to cancel plans because I’m too unwell.
This leads to people thinking I’m lazy and don’t want to see them. When in reality I want nothing more than to see that person or do whatever we were planning on doing.
I can’t predict when I’m going to be okay to do things. Planning things in advance is a nightmare for me. It causes me extreme stress because I don’t know if I’ll be able to do it or be well enough to enjoy it.
3. It’s not fun to sit around all day.
This is a massive one. It is not fun or enjoyable to sit on my sofa or lay in bed, day in and day out. It’s fucking frustrating and upsetting. I want nothing more than to get a job and enjoy my life.
Some days it’s hard to even concentrate on my book or cook a microwave meal, let alone go out to work.
4. Just because I’m smiling, doesn’t mean I’m okay.
I smile, alot. It’s my coping mechanism. I refuse to let my illnesses get the better of me, so I try my best to see the positive in every situation.
I hate people asking me if I’m okay or if I’m feeling better, so I smile like everything’s all good. I don’t want to be known as the miserable one who isn’t any fun, I don’t want people fussing me around all the time. I don’t want pity.
5. Everything isn’t always about my illness, but it kinda has to be.
I don’t want everything to be about my illness but that’s hard for me, when my life does revolve around my illnesses. It effects everything I do, it effect what I can and can’t do. I’m in a wheelchair so there are places or things I cannot do. It is incredibly frustrating. I’m sorry that my problems affect your decisions. I don’t want it to be that way.
6. Limiting myself and rethinking goals is not the same as giving up.
I have wanted to start uni for a long time and have always not been in the right place. But in February I am starting an Open uni degree, part time. I know it will extremely hard and more exhausting but if I can get one step closer to my goal, it will be worth it. I have always wanted to go to a campus uni but I had to rethink those expectations and come up with something new.
7. I am not ungrateful, I do not take people for granted and I do realise how hard it is for my carer.
I have been blessed with an amazing best friend who became my carer when things took a turn for the worse.
She has been there for me through thick and thin, through everything and I will be forever grateful.
I do understand that it hard to do so many things for another person and I do appreciate it. If she turned round to me one day and said I can’t do this anymore, I’d understand.
8. I appreciate the small victories.
Sometimes all I can do one day is get on and off the toilet. Other days, I can go out and have a day out at the zoo.
When my legs are so weak or I’ve lost feeling, just moving them slightly is a victory.
Having a Chronic Illness, whatever it is, sucks. Especially when people around you, don’t understand.