About Me

Brains & Bodies

me

Hey,

I am Morgan, a 27 years old, living with mental and chronic illnesses.

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My Health: Growing Up

Unbeknown to me, my journey to illness began in the womb. Growing up I felt fatigued constantly , sick from eating lactose and gluten,  bruised and scarred easily,  had trouble sleeping,  and felt dizzy standing up and dislocated my joints with exercise. However, as my routine blood tests came back normal, I thought all these things were well – normal.

As I shifted into my teens,  I was becoming allergic to more food and drink,  diagnosed with Irritable Bowel Syndrome, and chronic bladder pain and joint pain entered my life.  As I suffered with Anxiety and Depression as a child my GP was not keen to send me to see a rheumatologist.  Like many, they thought the pain I felt was in my head.

Once an active person, and someone who worked as a waitress-  I saw my life change in front of me. I was struggling to hold plates and glasses, and my neck felt to heavy to hold up. I did eat, but I was often sick and extremely thin, which made people questioned if I had Anorexia.

Enough was Enough. My dad paid for me to see a rheumatologist privately and I was diagnosed with Ehlers-Danlos Syndrome Type 3 – A connective tissue disorder at 23 years old. To my surprise the journey didn’t end there – It was just beginning. Many ask me when EDS will end. The response is morbid. The truth is EDS will end when I die because it is incurable.

Since then I have been diagnosed with Mast Cell Activation Disorder (MCAS), Chronic Bilateral Ankle Instability, Postural Hypertension, Photo-sensitivity,  Interstitial Cystitis (IC), Pelvic Pain Syndrome, Multiple Food Allergies, Oral Food Allergy Syndrome, Borderline Personality Disorder (BPD), Anxiety, Depression, Gastrointestinal Reflux Disease (GERD), Dyspraxia, Dyslexia, Chronic Pain and Chronic Fatigue Syndrome (CFS).

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My Health: Now  

My mental and physical health is still a huge challenge. Some days I find I cannot get out of bed – or do anything in bed.  A couple of years ago I broke both my ankles and in recovery I have physiotherapy, my shoes adjusted, wore ankle braces and attended the RNOH 3 week pain management programme. Unfortunately, my ankles are still very hyper mobile, and I am possibly having ankle surgery so I can become more active. By active I mean walking properly again – but we all have to start somewhere right? 

It is also suspected I have Endometriosis – Interstitial Cystitis evil twin  or  Adenomyosis, which needs to be investigated. This year I have been suffering from skin problems and scarring easily, which makes me feel sad. I also I have never fully got to the bottom of my gut issues because I could not be tested for Coeliac disease, as it requires you to eat gluten for 6 weeks – which my body could not cope with. I was meant to see a neuro gastroenterologist  but this referral has been transitioned to a telephone appointment due to COVID-19.

What I do in life

In 2020, I finished my BA (Hons) Business and Management degree at Oxford Brookes University. I was fortunate enough to find a contract during COVID-19 that enables me to do I job I enjoy,  working from home. I will find out if this contracted will be renewed or expiring at the start of March.

artI now plan to focus on getting back into blogging, learning new craft skills and expanding my Etsy shop – ChronicCreationsGB, which sells mental health and chronic illness awareness and personalised gifts.  I donate a portion of the proceeds from each sale to Ehlers Danlos UK. 

Blog Purpose

I want to share personal information and other stories, on chronic and mental illnesses to raise awareness. In addition, to providing tips to improve life with for someone suffering with a long-standing illness, to let them know they are not alone.

Thanks for meeting me.

I would love if you supported me and followed my Instagram page.

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Published by Brains & Bodies

27 years old and a professional patient. I spend my life in and out of hospital, keeping the NHS in Business. Click on About to discover more.

21 Comments

  1. Thanks for creating awareness of this ailment. I wish you God’s strength as you battle through. Pain is difficult to handle. I know this because I suffered through and overcame the pain of domestic violence. Lots of love

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    1. Hello Ingrid,
      Thank you for reading about me and your kind words. I will make many more specific posts/ videos on EDS to expose all aspects of EDS to raise awareness. I am sorry to hear you have suffered too, but I am glad you overcome it. I am going to look at your blog soon. Lots of Love, Morgan.

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  2. Hello Ingrid,
    Sorry I was slow getting back to you. I really like it. you are definitely talented with words. My favourite piece is the Ambush poem. Morgan xxx

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  3. Hi, Morgan, you are such a beautiful and talented girl, I really liked your spirit and inner strength. Thanks for giving awareness regarding EDS, so true lots of us are not aware of it. Blogging is a great way to share your thoughts and experiences in life. Looking forward to hearing more from you XXX

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  4. Hello, thank you for your kind comments. I love your blog, it helps me remember when I was well. I am sure I can get some tips for the future on places to go, when I am well enough to travel abroad again. When I work out how to make videos ( this might take a while) I will give a lot more information on EDS and I am working on another post for it. I am hoping it can be a guest post somewhere ( if someone will have me) so I didn’t want to overwhelm people with all the information in one go. I didn’t realise how therapeutic blogging was, you are definitely right ! Although, I am worried I will get addicted instead of studying when I go back to Uni haha. xxx

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  6. Hi Morgan

    this is a truly inspirational blog. I really admire your spirit and generosity. Good luck with this blog – I really look forward to learning more about living a healthier life.

    Good luck

    x

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  9. I just learned about this illness a few months ago when we took our 8 year old son in to the podiatrist for his inwardly turned ankles and lack of arch support. The doctor examined his flexibility and talked about this syndrome as a possibility. I looked it up and of course started worrying. I do not know if he has this or not, and I hope it is not the case, but my heart goes out to you. I think it is really great that you are blogging about your journey with this and raising awareness. It takes strength to do that. Looking forward to following your blog. 🙂

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    1. Hi Elisa, thank you for taking the time to read my blog. I feel I need to do a lot more posts on EDS to go through everything properly but I need more time for this, hopefully I will get there in the end. I am sorry to hear about your son but it is good that his podiatrist recognised it could be EDS. It is natural to worry, especially because he is so young. However, if he does not have other symptoms like chronic fatigue, bladder pain, chronic pain don’t worry just yet as many people can have hypermobility and live healthy lives. It is when other symptoms are involved it is more likely to be EDS. Furthermore, a parent normally has to have EDS to be passed down so if you experience hypermobility etc or your partner it is more likely your son has it. The next step would be to see a rheumatologist (in the U.K) or a genetic doctor (in the U.S) if you wish to explore EDS further with your soon. Thank you, to following me and I hope I can bring interesting posts to the table xx

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  10. Your blog is very honest and humbling.
    I am intrigued by your acknowledgement that a parent must have EDS – yet your own family did not seem to understand what was wrong.
    Do either of your parents not have EDS, or do they have it so mildly they never really noticed?

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    1. Hi Jake, thanks for reading! I need to make that clearer actually. So, it is possible to have EDS and it not be inherited but this is rare from my understanding! It was actually my brother who got diagnosed first and then me and then my dad. The only reason why we figured it came from him it because my mother was told she didn’t have it. So, my parents weren’t understanding because they didn’t know my dad had it or know a lot about it when my brother got diagnosed. I had also been complaining for years how poorly I felt but because I suffer with depression no one would take me seriously. My dad has become less hyper mobile as he has got older but has skin problems and now wears a wrist brace and does not work a normal job and is a diabetic x

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  11. Hello Morgan, first of all let me just tell you that I am really proud of you for doing what you do. You are such a strong lady and an inspiration to many as well, I am sure. Simply put, you are awesome! Keep up the great work and know that I will be here to support you. I admire your courage and work towards raising awareness – it is super important. If you ever want someone to talk to, you can contact me (details can be found on my blog). Thanks for sharing your story. Wishing you all the best for everything you do!

    glimpsesofdaworld.wordpress.com

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    1. Hi Darsha
      Thanks for reading my story ,
      I’ve taken a break from blogging at the moment so sorry for the late reply but thank you I am quite alone at the moment .
      I will be sure to take a look
      Morgan x

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