Living with a chronic health condition can be tough. Life is a constant battle against your own body and it’s so exhausting. I’ve come to terms with the fact that I may not be able to do certain things that I’ve always wanted to do at ease (such as going to Glastonbury which I’ve been watching on the TV and have gotten extremely jealous) but there are things that I can do. I’m trying to take steps to improve my health as much as I can and focus on the things that I do have control of. It’s draining pretending to be okay when you really just want to lie in bed and cry but I refuse to let this condition beat me. It’s frustrating knowing that having a “good” day and making the most of it by doing something will more than likely lead to repercussions in the form of fatigue and more pain but I can’t let that stop me from enjoying those days. I can’t just sit in waiting for a bad day to happen and waiting for the next flare. That isn’t living, that is existing. I am determined to live the best life I can, even if it may be different than I planned!
Love, hugs & hope, Charlie xoxo
The past 12 months has been full of ups and downs. I have formed new relationships, had relationships break down, moved house, started a degree and many other memorable things. Sometimes I feel as though it is important to look back and reflect on what has changed and what I’ve actually achieved. I guess that day by day things don’t seem to change but when you look back everything is different. There is no doubt that having a chronic illness can put a lot of strain on romantic relationships. I had a romantic relationship break down last year. The relationship started before my condition began to deteriorate and before I was actually diagnosed with Ehlers-Danlos Syndrome and this brought me a great deal of guilt. I guess that I felt as though I had somewhat tricked my partner at the time because he started building a life with a healthy-ish young woman who went to work, went out with friends and was able to do fun stuff and then years later, during my lowest periods, was stuck with a very sick person who could hardly leave the house. I think I started blaming myself for the breakdown of the relationship but looking back I was and I am still me, just a slightly different version! If people can’t see that then it is their problem,
For a while I lost myself. I didn’t want to see anyone. I didn’t want to do anything. I felt extremely low and I thought that life couldn’t possibly get any better. I felt trapped in my body and couldn’t see a way improving things but I did. I managed to turn my life around somewhat and yes, there are still lots of things that aren’t perfect but I have been able to change some things for the better. I believe in myself now. I have discovered that a bad day doesn’t have to be a bad week. I have come to terms with the fact that some days I am going to feel better than others and yes, it is very frustrating that I can’t do some of the things I enjoy doing but I have realised that there are still things that I can do!
I think that acceptance is one of the most difficult things to deal with when being chronically sick. It is hard to accept that you might not have a day when you are “pain free”. It is hard to accept that you may not be able to do some of the “normal” things like work 9-5. My dreams of travelling, having a family, running a marathon etc. may have to change slightly but I have accepted that and realised that it doesn’t mean it won’t happen, I may just have to go about things differently. I have lost some people through getting sick but I have also met some amazing people and realised who is really there for me. I am so thankful for the people that see me for who I am, Charlie the music loving gig-junkie, rather than Charlie who is sick!
I guess the point of this post is just to say don’t give in. Don’t let anyone take you for granted. Don’t let anyone make you feel like you owe them something because you are ill. Don’t let people treat you differently. If someone judges you then it speaks more about them that about you. Follow your dreams. Believe in yourself. I believe in you!
“Right guys I need your help to get the word out, when I return from collecting the game at midnight on launch day I will be attempting a solo 48hr live stream on www.twitch.TV/Crosby85.
The reason I am attempting a 48 hour stream is to raise awareness of the rare condition Elhers-Danlos Syndrome (EDS). EDS is a rare genetic condition in which a gene mutation causes the connective tissue in the body to be abnormal. People with EDS have faulty collagen and collagen is the glue that holds our bodies together, so very little escapes symptoms. It is a life altering, debilitating condition and causes it’s sufferers lots of pain. There is no cure and very little treatment available and unfortunately it is a progressive condition. There is a lack of knowledge about EDS within the medical profession which means that it is misdiagnosed and overlooked. In order to raise awareness through my stream I will be sharing a fact about EDS every hour.
Last year I managed to complete a 24hr Destiny live stream but want to push myself even more this time around. Doing a 24 hour stream was hard due to having to concentrate on the game for so long without a substantial break, this means that I will need all the help I can get to complete 48 hours! I will have some friends helping me get through the 48 hours but if I can get people to watch the stream it would spur me on to get to the end. Please share this post as I need to get as many people behind me for this as I possibly can.”
I decided to make some bracelets and ribbons to try and spread some awareness of invisible illnesses.
There are 3 styles of ribbon broaches and 2 styles of bracelets.
Ribbons are £2
If you buy 4 you get a 5th one free!
Beaded bracelets are £3
Wool bracelets are £1.50
If you would like to order any then please comment or message me.
Styles may vary slightly from the pictures.
Any donations will help towards my medical costs.
Payments via PayPal ♥ www.gofundme.com/charlieharris