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Chronic illness

Hi Sam,

I feel so out of contol. After being unwell for years i have finally got a diagnosis of SLE (Lupus). It's a relief to know im not a hypochondriac but im really scared at the same time. It was missed for quite a while and so now im begginging my third week in ICU after diagnosis (hopefully moving to a general ward soon).

i feel trapped here, and everytime something positive happens it feels like new really bad things happen. im not allowed the front line drugs as my kidneys arent working properly and it made me so frustrarted and upset as that was always the plan and now it cant happen. i had to start chemo this monday instead :( i feel worse than i did before and despite everyone being so positive about my hair i feel ugly with my bald head. I dont feel like ill ever get back to myself again when im in here and i just want to go back home and to school again!

its my final year of alevels and as im watching all my friends begin their adult lives and apply to uni and go clubbing and learn to drive, im stuck in hopsital. i feel so pressured to be positive and smiley but its so draining when all i want to do is cry. i feel fake when people tell me how well im coping or that im'insperational' or 'strong' because im not and im petrified and i all i want is for it all to go away.

please help with this feeling

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Sam

Hi there,

Coping with a long-term illness can be difficult but there are ways to make it a little easier. Getting the right routine and finding lots of small ways of looking after yourself can really help. It's also important to make sure you're not trying to cope on your own and that you use the support of people around you. When things are really bad and you've had to go into hospital, it's good to start planning for the future and using that to motivate you through the difficult times.

Being in hospital isn’t usually pleasant for anyone - it's an unfamiliar place where you don't have home comforts or the freedom to do what you want. As well as your surroundings being different, you may not feel like yourself either - illness can affect both your physical and mental health. With the chemotherapy making you lose your hair, you may feel as though you don't look like yourself either. These are lots of changes all at once.

Being in the ICU sounds scary but everybody is there to help you. The doctors and nurses will be working very hard to make sure you get home as soon as possible. While you’re in hospital it can be good to think about and plan what you’ll do when you get back to your usual routine. Having plans can help you when things are tough. It can also help to have some familiar things with you in hospital - favourite books or a stuffed toy that you've had for a long time. They can make things a little less scary sometimes.

It's going to be hard seeing your friends doing things you can't do right now. It might feel a bit like everyone is leaving you behind - but once you leave college it really doesn't matter too much what you do. Everyone does things at their own pace and isn't as noticeable once you become a young adult. You'll have friends in university, others who work and others who don't know what they want to do yet. Some people don't go to university until they’re much older - it's okay and very normal for this to be the case.

I can hear that you don't feel strong but the fact that you’re still fighting and keeping going means that you are. It's okay to be scared though and it's okay to say that you are - it doesn't make you any less strong. In fact, admitting when we’re scared is one of the bravest things we can do.

I hope this has helped, thanks for sharing this with me.

Take care.

Sam

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