First off... I have had most of my conditions since birth but the symptoms were not as severe until I was about 5 1/2- 6 years old. I have this memory of swinging on a swing going up and down and up and down and up and down.. I would have only been about 3 and a half. My Mum was pushing me... That swing ride sort of symbolizes how it is to have a chronic illness. But unlike the swing ride this 'chronic illness swing' is not always fun it is not, like the normal swing ride, something you want to go on again and again. The 'chronic illness swing' is something that deep inside you want to get off.
There is a lot of ups and downs in the life of someone with a chronic illness. There are times when you are up and you are feeling 'pretty good', your pain is well managed, you are vomiting once a day instead of 5 etc. You feel good and sometimes, if you are lucky you can forget for a second that you are fighting these illnesses. You can manage to go out a little bit, you are still not normal but this is an 'up' time for those with chronic illnesses. Then there are the down times. This is when you are in so much pain all you can do is lay in bed and cry, when you can't keep down any food at all, when you can't go out to do the basic things, like school or grocery shopping. Let alone go out with friends. These are the times when you can't leave the house for weeks on end, or when you do it is to go to the doctors. These are the times when you feel isolated and you feel like this bad patch will never end. The swing keeps going up and down and up and down. The problem with being chronically ill is you never know when these ups and downs will be... you can't plan around them because you health never sticks to a routine and never gives you a date of when your down period will be. It is hard to make plans when you are chronically ill as you may have to cancel them at any time. My Mum pushing me is another symbolic thing. Sometimes when you are chronically ill you need help from friends, family, and medical professionals. Your friends and family help you to not lose hope when you are going through a rough patch and that is a very hard thing while your medical team try to help find treatments to end this 'down' period.
So for those on this chronic illness swing... don't lose hope. For those who know someone with a chronic illness the best thing you can do for them is to help them to never lose hope.