Make the most of every day!

Standard

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

disss

Believe in yourself!

Standard

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!

believe

Not all disabilities are visible…

Standard

So lets be honest, although most of us probably don’t want to admit it, being judgemental seems to be human nature. I have judged people and I have been judged but we don’t know everyone’s story and it’s a sad trait to have. I guess a lot of it is to do with stereotyping. There are so many stereotypes out there and these seem to get passed from generation to generation and it really needs to stop.
I went to a hospital appointment recently with my carer and was waiting to park in the disabled bay. I’m a 25 year old woman with invisible disabilities and I was judged by two different people whilst waiting. A gentleman who was coming out of the bay wound his window down and made a hand gesture to call me a “w*nker” and an elderly woman who must have wanted the space called me a “silly cow” and waved her blue badge at me so I waved mine back at her! A similar thing happened to my friend recently. She is 18 and she was waiting for a disabled bay and an elderly woman wound her window down and told her that those bays were reserved for disabled people so she showed her badge and the lady then said that they were for “elderly people” and that she should go and park elsewhere.
Think about it. Have you been judged? Have you judged someone? We don’t know everyone’s individual story.
The really thin girl you assumed was anorexic may be desperately trying to put on weight or could be fighting an invisible illness that makes gaining weight difficult for her.
The guy you saw on crutches struggling to walk last week who is walking today may be suffering with a condition that varies massively, it doesn’t mean he was faking it.
Please try not to stare at the young girl in the wheelchair trying to figure out what is wrong with her.
The guy who has used the disabled toilet but looks “normal” could be suffering with IBD.
Not all disabilities are visible. Not all disabilities are the same. Think before you judge.

judge
Love & hugs,
Charlie xoxo

EDS Fact: Number 82

Standard

 

EDS82

 

Intestinal Pseudo-Obstruction

Standard

I thought that I would write a post about intestinal pseudo-obstruction seeing as though it has been the reason for my most recent hospital admissions.

What Is Pseudo-Obstruction?
Intestinal pseudo-obstruction is a rare condition (like I needed any more of those!) in which symptoms resemble those of intestinal blockage without there being a physical obstruction. It can be an acute condition where it comes on suddenly or it can be chronic and long-lasting.

What can cause it?
Primary or idiopathic intestinal pseudo-obstruction is when the condition seems to occur by itself. It is usually caused when there are problems with the muscles, nerves or interstitial cells of Cajal. This stops the normal contractions of the intestines so the food, fluid and air has problems moving through. Intestinal Pseudo-Obstruction can sometimes be caused by mutations or changes in genes and these gene changes could also account for bladder symptoms and muscle weakness that sometimes accompany the condition. It can also be caused by mitochondrial neurogastrointestinal encephalopathy, where the structures in cells that produce energy do not function correctly.
Secondary  intestinal pseudo-obstruction is when the condition develops due to another medical condition. This could be anything from surgery, infections, medications and other diseases such as, you guessed it, Ehlers-Danlos Syndrome. That pesky condition seems to get everywhere hey!

What are the symptoms?
The symptoms often mimic that of an intestinal blockage including; abdominal pain, bloating, constipation, diarrhoea, nausea and vomiting. Over time people can develop problems with their esophagus, stomach, or bladder and it can cause malnutrition, bacterial overgrowth in the intestines, and weight loss.

How is it diagnosed?
It is usually diagnosed by a gastroenterologist. They take medical history, complete physical examinations, imaging studies etc.

How is it treated?
Treatment varies per individual but it is often treated with nutritional support, sometimes including Enteral feeding or Total Parenteral Nutrition, medications to try and help control symptoms and avoid complications, dietary adjustments and decompression to remove gas from the intestines. Sometimes it has to be treated with surgery to remove sections of the intestines, however surgery can worsen the condition. When other treatments have failed and in extreme circumstances a small intestine transplant may be an option.

 I have a few more tests coming up and then I will have an appointment with my gastroenterologist to discuss what the next steps will be for me. I will keep you updated.

EDS Fact: Number 71

Standard

EDS 71

Today’s fact is about Chronic Intestinal Pseudo Obstruction which is something I suffer with and the reason I have just come out of hospital.

Awareness Needed…

Standard

Last night I was taken to hospital by ambulance after passing out and being unresponsive due to severe pain levels. Unfortunately once again I was faced with people who had never heard of Ehlers-Danlos Syndrome and didn’t know how to treat me. I was pricked with needles numerous times, even after saying I have a connective tissue disorder and have fragile veins and usually need a more permanent line for IV’s, I was left for hours without pain relief as they didn’t know what to give me after I had a cardiac arrest in November and unfortunately there was not a lot that could be done. I do not blame the medics as they were very busy and the staff were all very kind and wanting to help, but this shows how we need to raise more awareness of Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and all the other “rare” and invisible conditions out there. We need more specialists locally, not just in London. We need a clear care plan for when things like this do happen. We need help. We need AWARENESS!
#InvisibleIllnessVisibleHope

invisi

I may not look sick on the outside but on the inside there is a different story so I decided to take a picture where I look “well” and write some of the conditions and symptoms I have that are invisible.

ins

Together we can make a difference ♥