Make the most of every day!

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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

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Believe in yourself!

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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!

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Invisible Illness Week!

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“This week is Invisible Illness Week. The Ehlers-Danlos Support UK motto is ‘making our invisible visible’, but this has a multitude of meanings.
There are 7 different types of Ehlers-Danlos syndrome, but it can often feel that the condition is an invisible one in wider society and within the medical profession. How many times have you had to explain to someone what EDS stands for, or what your condition is to doctors, A&E staff, colleagues or friends? It is vital that we work together to raise awareness of Ehlers-Danlos syndrome and speed up access to care, consistency of treatment plans and support for patients. Knowledge and understanding of all types of EDS within the medical profession, would go a great way to ensuring patients are safe, receive the correct method of medical investigation for their type of EDS, and have confidence in their care. EDS UK are working hard with our medical advisory panel to help to increase awareness at the level it is needed.
For many in the community, their EDS is invisible and their struggle with pain, fatigue, gastro issues and more can be made even more difficult by the fact that others cannot understand it. The limitations that EDS can place on us are not easily understood by others who cannot see beyond a one-dimensional view of illness. It can be difficult for patients of all ages, who perhaps to others ‘look fine’, but struggle with their EDS at home, work, in school, in social situations or even to stand on their daily commute home. Having to justify why you need to take that seat on the bus, or explain to your friends why you can’t make it this evening, can be tiring and upsetting for many. This is where we need to work together to change not only awareness of EDS and invisible conditions, but challenge attitudes towards disability and understanding.
The nature of EDS can mean that we sometimes have visible symptoms; one day fatigue and dislocations could mean we require supports, crutches, braces or a wheelchair, where a day or two later this isn’t the case. The fluctuating nature of EDS can be difficult for others to understand and take seriously. With vascular EDS, the serious nature of the condition can be difficult for doctors, paramedics and medical professionals to understand unless bruising or bleeding are obvious, and they have knowledge of how to carefully manage patients.
Not all types of EDS are invisible and can have very visible symptoms. However, the multi-systemic nature of the condition can be invisible due to lack of research, knowledge and awareness, and this can have a detrimental impact on treatment, care and support for patients.
The battle is ongoing, and paved with obstacles, but together we can achieve great things. Please join EDS UK in making our invisible visible, for this week and the next. Together we can make a difference. For more information about joining the charity, finding support, medical information or getting involved, please visit www.ehlers-danlos.org
Share this post, share your experiences and each tell 10 people about EDS. Image the difference you can make?”
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