Not just physical pain…

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The physical pain that I have to put up with twenty four hours a day is often very difficult to cope with. But there is a different type of pain that comes with having a chronic illness that can sometimes be just as bad as the physical pain. Emotional pain. Living with a chronic illness promotes feelings angrier, frustration, fear, exhaustion and sadness.

I am angry. Angry at all of the professionals I have seen who have misdiagnosed me. Angry that no one knew what the cause of my pain was for six years. Angry that almost every medical procedure I’ve had in the past has caused more pain and my condition to worsen. Angry at myself for going through with them and always giving myself false hope. Angry that my life is now restricted while those around me have endless capabilities. Angry at healthy others for taking their health for granted. Angry at those who try little to understand what it is like to live with a chronic illness. Angry that I now have many new symptoms – haven’t I suffered enough?

I am frustrated. Frustrated I can no longer do all the things I used to. Even on good days I can only walk around for about ten or fifteen minutes before I have to sit down again. And that bad days consist of barely any walking at all. I’m frustrated I cannot always go and do the food shop or go and meet a friend for coffee. I’m frustrated that I now have no way of releasing feelings of anxiety or worries as I can no longer exercise. Frustrated at the lack of control I have over my condition.

I am scared. Scared I won’t ever be able to go on a big shopping trip again. Scared that I won’t be able to go travelling again to see all the countries I want to see. Scared of planning things like weekends away, as I know of sometimes I won’t be able to go through with them and therefore let people down. Scared I may have to at some point give up working. Scared of my condition worsening and limiting my life even further. Scared of being given another diagnosis.

I am tired. Tired of living with this illness day after day. Tired of all the treatments and investigations. Tired of talking about my condition. Tired of waking up every day and pain being the first thing I think about. Tired of having to plan my day meticulously in order to save my precious spoons.

I am sad. Sad I don’t feel as comfortable in my skin as I used to as I cannot exercise or be very active. Sad that I can’t go for a jog or a bike ride with my boyfriend. Sad that I spend half my day resting. Sad that I can’t go out and party with my girls on a Saturday night.

Having a chronic illness has made me feel like I have lost the life i used to lead Pre-illness. For a long time I felt so angry and upset – it felt like I was grieving for my old life. However, with the help of a fantastic pain psychologist who I started seeing in May this year, I finally have sense of acceptance of my condition. I have developed coping strategies and learnt to live and adapt to the specifics of my condition. This doesn’t mean that the emotions I listed above have gone away. It just means I have just accepted that my condition comes with emotional pain and learnt to deal with it. And it’s not just negative emotions I experience with my condition I also have a great sense of positivity for the future since. I am confident that no matter what road my health goes down I am strong enough to deal with it. I am a fighter … I’ve dealt with SO much already and I only get stronger the longer I live with my chronic illness. I have a lot of emotional pain but with it comes determination and drive to manage my condition even better, to hope for the future and to live happily and healthily.

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4 Comments

  1. Fiona March 5, 2014 / 8:12 pm

    Hi Sophia!
    This is such a hard journey to be on especially at such a young age. I am also on the same journey having had pain since I was 18 and latterly chronic fatigue. I think those of us with such illnesses and conditions continue to go through the cycle of anger, acceptance and denial. I have not lost hope of being healthier as I continue my quest of reading the latest research and trying to find an answer to it all. This seems to have become my one main focus.
    I also have just started a blog, but being 43, I’m finding it a bit more technically challenging! But, I do think it can be a good way of expressing thoughts and feelings without ‘bothering’ our friends and family.
    I do believe that we can have an enjoyable and fulfilling life despite our illness and I so wish this for you. I hope you can enjoy as much of the Cornwall’s air and coastline as possible! And I do hope that your flare will come to an end soon.
    Much love,
    Fiona.

    • spooniesophia March 6, 2014 / 8:48 pm

      Hi Fiona,

      Thank you so much for taking the time to write such a lovely message. Sorry to hear you’ve had pain for so many years. I completely agree that we go through a cycle, one minute I feel strong and in control and the next I feel frustrated and angry.
      I checked out your blog, it’s fantastic! It really helps doesn’t it, just to get things down in writing.
      I hope you are having a good pain day, and that the future brings you better health and happiness.
      Gentle hugs
      Sophia

  2. Dead Men Don't Snore March 15, 2014 / 5:47 pm

    There is so much here I identify with. especially the determination to keep on going and carve out some semblance of a life no matter what. It can be so hard but you clearly have the attitude you need to get through the pain when life is so tough.

    • spooniesophia March 16, 2014 / 10:35 pm

      Thank you so much. That means a lot. I will never give up :) hope you don’t too! hope you are having a good pain day. Sending healing vibes your way! X

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