I think that going through any kind of hardship, no matter of what nature, can sometimes mask what you do have in life to be grateful for.

It’s so easy for me, and only natural, to focus on what I’ve lost. Compared to only 4 or 5 years ago, I’ve had my world totally stripped of life as I knew it. My total life plan was scrapped, I have had to intermit from university, I no longer have any independence, I have to use a wheelchair and rely on carers to do the simplest of tasks I never imagined, at my age, not being able to do. My life went from having a successful academic career to spending extended periods of time in hospital, with my body failing me more and more. My daily routine was suddenly out of my control, and my life was dictated by my body.

This week in particular, I’ve been really struggling. I don’t really know why; as always, there has been a lot going on, but I just haven’t been able to see a way forwards. I can’t help but apologise for basically my existence and the smallest of tasks seems massively overwhelming. I just haven’t been able to get myself out of this frame of mind and I’ve spent so much time in tears.

How did I get here? 23 years of age, I can’t even eat a meal, I’m fed through a tube in my nose, I have a stoma bag, I’m in a wheelchair, my health conditions have been taking over my life and I don’t know how much more I can take.

However, although I’ve found it even harder than usual to see clearly, I need to try to focus on what I do have and what I am truly grateful for. Please don’t think that this comes easily, because I can assure you it doesn’t, and whatever positive front I may seem to put on here isn’t how I feel most of the time.

Firstly, there’re things to be grateful for because of my illness. This sounds crazy, I know, but without it I wouldn’t have met some of my closest friends who share some of the same conditions as me. I’ve lost most of my older friends because of being unwell, but the friends I’ve met through my blog or other forums understand me like no one else and the bond I have with them is something I’m so grateful for. There’re people whom I can talk about things I never imagined myself having to discuss at my age, but people who have an understanding of at least some aspects of what I’m going through.

As well as this, my illnesses have truly changed my perspective on life. It has shown me the most important things which, to me, is my family – I have the most supportive parents, sister and boyfriend, as well as Jeffrey who brings me more joy than anybody realises. Being unwell has also made me grateful for the smallest things I never realised I took for granted; getting fresh air after eight weeks in hospital, sleeping in my own bed and having a nights sleep without being sick.

When I really thought about it, I also have a lot more to be grateful for – good days where my pain and other symptoms are manageable and I’m able to get out the house and enjoy myself, even if it’s just taking Jeffrey to the woods. Getting a surprise, receiving a nice message or comment on a blog post or getting a letter from one of my pen pals; honestly the smallest things now just mean the world to me as I understand the importance of kindness more deeply.

As difficult as life is at the moment, and as much as I’m struggling both physically and mentally, all I can say is that the love and support from my family and friends, messages, visits, and any act of kindness, no matter how big or small, is appreciated more than I can put into words. No matter how challenging life gets, there is always something to be grateful for.

8 thoughts on “Gratitude.

  1. Dear Ella,
    Chronic illness is just such an awful, unremitting pain in the backside, as well as all the other places! It is so unjust that someone as young as you with such promise is battered by pain and illness.

    You clearly have a positive mindset and have wonderful support from your loved ones but I can empathise with the daily grind that illness places on your young shoulders. You do so well.

    I read your posts and tweets and am full of admiration. I’m in my fifties and have illness throughout my life and am fortunate enough to have a had a family, a career and have just had to retire because I’ll heath forced me to give up a job I loved.

    My neurological condition forces me to cut back on the things I used to do but at least I have lived and loved. Even now I’m thinking of doing more studying although I don’t know if it is physically possible.

    The disparity between one’s desires and one’s reality can seem like a chasm.

    That can be the biggest battle of all. It challenges our sense of self. Our notions of identity.

    Still, we have to keep at it. Young or old, life is to be lived. Whether it be from the bed via our phones and online or if we feel able, out in the world, with real people, in the communities we manage to access.

    I won’t throw clichés at you. They don’t really help. Sometimes you can only get through the hour by breathing in and breathing out.

    Well done for facing the day and celebrating every success, no matter how small.

    Wishing you better days and pain-free moments, restorative hours and love by the bucket load.

    Theresa x

    (Forgive me – I didn’t mean for this to turn into an essay!)

    Liked by 1 person

    1. Thank you so much for your kind words – they truly mean more to me than I can ever express.

      I’m so sorry you’re dealing with illness too, but I’m glad you’re also able to see the positives and what you have achieved in life which is something to be so proud of, even more so considering what you’re dealing with illness wise.

      Thank you so much – sending you all my love and strength xxxx


  2. Hello Ella I can so relate to every word. I too have EDS, Type III and I think “struggling” is something everyone of us that has EDS totally understands and yes it is easier to give up at times than to plough on with something that really has no cure, we are stuck with it whether we like it or not and that is the tough part. Coming to terms and excepting the unknown tough road ahead, not knowing how quick our glue will dissipate, as for mine is declining rapidly now.If ever you just need to chat or have someone to understand and relate too I am on Facebook. Love to you and keep your chin up hun we are all here for you. xxxxx,

    Liked by 1 person

  3. Hi Ella
    I thought your blog was truly inspiring, you have an incredible attitude, which will see you through the tough times.
    I’m 57 years old and I’ve also got EDS type III. My EDS first became apparent at 17 with cardiovascular problems, though I wasn’t diagnosed properly till last year, I have been using crutches / wheelz for 24 years. I was at university when due to a fall I suffered pelvic/spinal nerve damage and my world changed forever.
    However, life has been surprisingly good, even though I’ve never ‘recovered’. I used to think that I needed a ‘perfect’ body, but this isn’t true at all, it’s your attitude that defines your personal happiness.
    As I have got older, I’ve realised the importance of enjoying each day, and not worrying too much about the big stuff, because the big stuff tends to take care of itself, life with EDS can be surprisingly good.
    Wishing you lots of fun, joy and laughter
    Lyndz 😀xxx

    Liked by 1 person

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