Dear Chronic illness

Wednesday 28 February 2018

Twenty-three-year-old Rachel Aylward from Sussex has been living with M.E. for ten years. Earlier this month, she wrote a letter to her chronic illness and posted it on her blog, which has been shared widely on social media. I recently had the pleasure of meeting Rachel, and having become ill as a teenager myself, her experience and concerns were all too familiar. Rachel’s letter is a must read for fellow young M.E. sufferers, although anyone with a chronic illness will be able to relate to her words, and it can also give others an insight into living with long-term conditions.

Dear Chronic illness,

I am going to start off by saying I wish you would just give me a break. You certainly gave me more than I bargained for at 13. I was expecting my teenage years to be hard but not as hard as they were with you coming on the scene. Why do you have to be a difficult illness to test and treat? Not only that but you appear invisible. I don`t just have to battle you on a daily basis but also doctors, friends and family. Now I am in my 20`s I like to think we understand each other a bit better even though there are days I hate you and you hate me. If only you realised how bad you affect me physically and mentally.

Daily I am constantly fighting through. Some days just leaving bed and having a shower is impossible. I can deal with tiredness but not the overwhelming exhaustion, where I feel like I am dragging my body, forcing each step and movement, just wanting to collapse and sleep for a whole year. Even though that still wouldn`t make me feel completely refreshed with the muscle, joint aches and pains I experience all over my body and faintness which makes me constantly need to sit down. (one day I might faint into the arms of a guy)

Why do you give me Dizziness, vision disturbances, sensitive hearing, light sensitivity and nausea all hours of the day? It takes so much focus and uses all my energy just to walk in a straight line. The amount of times people think I`m drunk. Especially hate the random attacks of vertigo you throw upon me which put me out of action for days, As well as a host of other symptoms! I have lost all my confidence and independence. I swear you can`t wait to create new symptoms for me and are laughing…

I hate the crippling anxiety that has come with it all. The feeling of suffocating, drowning just trying to keep my head above water. The worry and thoughts that swirl around my head without a break and panic attacks which consume me.

Not only does it affect me but others around me. I rely on my parents to care for me when they have their own life to live. My social life has been affected, I very rarely go out on my own. Don`t lie I know you feel an ounce of guilt and isolation… Can you see the strength it takes for me to smile while wanting to cry. You are interfering with my hopes, dreams, ambitions, relationships and making me miss out of work? All I want is to feel and be a “normal” human being.

Do you know how much planning goes into my days just to keep you happy? I have to make sure plans are on a day where I am in the day before and after to rest and recover. Also, I can only manage one thing and must make a time limit to not overdo it. I must have someone with me at all times for support.

At my age, I shouldn`t be worrying about these things.

It`s hard to explain everything I go through and struggles I face but I hope you get an idea of just how you make me feel and affect me.

I suppose I should laugh at the brain fog moments which make me forget and question my common sense. I have trouble remembering anything, post it notes are stuck everywhere! The amount of times I have to re-read and get people to repeat things, even then it doesn`t quite sink in. At the moment, I`m trying to remember a funny brain fog moment but surprise surprise can`t remember.

Now I know you probably are not expecting this, since I`ve been having a go at you but I should also say Thank you, for opening my eyes to things I might have never seen before. Such as the little things which people take for granted, like, the ever-changing sky, the crisp raindrops that refresh the soul and the warming sun beams on my face. Trees and flowers changing colours through the seasons and the nature which I encounter and see, even though it might just be experienced through my window.

I`m also thankful for still being here even through the storms I`m going through. I can`t always look on the bright side but certain things get me by like my love for crafting and animals, especially my cat which is always by my side and is like a therapy (even though she snores). The friends which have stuck by me and supported me, you find out who your real friends are during this.

Since becoming ill I have been a part of a world called “spoonies” it`s been lovely and such a relief that we can support each other through this journey. I`ve made friends with people I might have never met if we were not going through the same situation. I make good use of my spare time when I have some rare energy, writing pen pal letters, making and sending gifts to brighten someone else’s day. I`ve also recently got into writing and blogging about my rollercoaster life and tips to inspire and help people. Which I would have never thought of getting involved in if it wasn`t for you, chronic illness.

I don`t know what the future holds with you and me and if I will ever recover but I am determined to improve. Hopefully there will be some light at the end of this tunnel. I still have things that I want to achieve with gradual steps. My aim now is to find a doctor and some sort of treatment to ease you and make me cope better. I`ve accepted that you are part of me and I will help you if you try and help me…I guess we are in this together.

Though the storm clouds are caving in, a little light still shines through.

Be kind to me now,

Rachel Aylward
Justlittleme

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News

2 Dec 2018
The Sunday Times Article
30 Nov 2018
Where the Journey Begins
26 Oct 2018
Forward-ME Meetings
18 Oct 2018
New Article Published
13 Aug 2018
M.E. Organisations
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
28 Apr 2018
The Synergy Trial

 
 
 

News

2 Dec 2018
The Sunday Times Article
30 Nov 2018
Where the Journey Begins
26 Oct 2018
Forward-ME Meetings
18 Oct 2018
New Article Published
13 Aug 2018
M.E. Organisations
10 Jul 2018
Latest Metabolites Research
23 Jun 2018
Westminster Hall Debate
28 Apr 2018
The Synergy Trial