Dealing with Chronic Illness

deLaurenzo · ‎12-11-2018

I have been sick for 6 months now and have had to move back home so my parents can take care of me. I've lost all my independence, I'm slowly losing friends and I'm losing the will to keep fighting my sickness. The doctors don't even know what's wrong with me still, which makes it all the more frustrating. No one understands what I'm going through, everyone has a friend of a friend that's gone through something similar which automatically makes them an expert on what I'm going through, but they don't really understand. I need to know how to get through this, how to keep fighting, all I want is to be my old self again and not be stuck bedridden watching everyone else live their lives and having the best time. How do people get through this! (Please I beg of you do not suggest reading a good book, writing a book, painting or finding a good Netflix series, that's all I've done the past three months and I'm going crazy haha)

Quercus · ‎12-11-2018

Hi deLaurenzo and welcome to the forums.

You wrote about wanting to be your old self again and I think this is massively relatable. It is extremely hard and painful to watch others have freedom when you are restricted.

What helped me was to work at pushing that dream to the back of my mind (not easy to do). Hope is a good thing but when you are physically restricted I found putting my life on hold until I could move again made me feel frightened and hopeless.

Have you brainstormed and made a plan of what IS possible for you just in case it takes time to find out what is happening to you?

There is only so much tv a person can watch. You may have had to move home but you're still an adult and your independence and freedom is important. Before you became sick were you studying or working? What did you enjoy?

You're right that noone but you knows what your illness feels like. It is hard to accept at times that people are trying to be kind and make you feel less alone. Have you thought of a few topics you could use to change the topic if you feel uncomfortable?

Do you feel comfortable providing more information about the symptoms of your illness? It's important to me that any ideas are practical. For example you mentioned that you do still have friends and I wonder whether if you had a wheelchair or similar would it be possible for you to go out?

One very important point is to check in regularly with your GP about your feelings. It is so easy for medical professionals to disregard mental health when someone has a chronic illness... The "of course you feel low... You're in pain" response (grrr). If you feel down please keep asking for help. You can use the K10 checklist on BB to gauge how you feel.

romantic_thi3f · ‎13-11-2018

Hey deLaurenzo,

Welcome to the forums and thanks for reaching out and being here. I'm sorry that you're going through this.

So there's this great book I'd recommend... (just kidding) 😛

I do not understand what you're going through, because I haven't been in your shoes - but I do understand losing your independence, losing your friends and not knowing why you are unwell. It really is a downward spiral sometimes - especially if your Doctors/Specialists don't seem to have a lot of hope or direction in where to go. Your story is very relatable to my own.

So - to your question -

Who can be your support group now? I did lose a lot of friends in this, but I also gained a lot of friends. For me I used a lot of social networking, but ultimately which ever way you choose - you may be alone in your bedroom but you don't need to feel alone. There are a lot of people going through similar things as you.

What do you enjoy and where can you grow? Yes - this is where the books come in (sorry!) but we need something to help us feel sane! Are there other things that you enjoy? Or maybe volunteering or courses? There's so many you can do online or self-paced. Quercus mentioned brainstorming and this is so important - finding out where your capabilities are now and how to work around them.

Find things that help you feel good. Thinking about people having the best time when you're not is the sure fire way to have the worst time! What can inspire you? What can get you going?

Personally - I really got a lot of benefit out of www.chronicbabe.com (the YouTube videos and the articles) because I needed to see people who were dealing with their own chronic illness and still having a good time. Maybe you'll like this one too.

I hope this is a good place to start! Feel free to jump in or ask any questions if you like.

deLaurenzo · ‎13-11-2018

Thankyou so much!! I will definitely look into the choricbabe site! I've definitely considered studying a course online but unfortunately with all the hospital bills it'd just cost to much, so instead i've taught myself a few things which has been really helpful with getting through the days. It's just some days are harder than others you know. Thanks so much again 🙂