The Untold Story Told

Twelve Years go by my career still going from strength to strength. I was then taking up another course in Learning and Development. It was to assess adult learners like myself when I was sixteen. Carrying out their Early Years Care and Education NVQ now called Teaching and Learning. I was training to assess them in their qualification. Two years of more hard work. I qualified as an assessor. Another milestone reached. Life was great yeah…?

The Middle

There is a story I haven’t told you yet. A background story…

My dad died on September 24th 2015. I was a teenager when I was first told he had the first stages of renal failure. His kidneys were starting to fail him. But he marched on. He went to work and still carried on for as long as he could.

My dad was put on Parietal Dialysis. I have many memories of my dad doing this from the boot of his car. People would walk by. He never cared who was looking or whispering. This was the thing keeping him alive and why should he be ashamed of it. His humor was a big part of his personality. Anyone who knew him witnessed this.

Time went on we knew he had to have a kidney transplant. We had the phone call. A kidney came available. But it wasn’t meant to be. The kidney only lasted forty eight hours.

My mum gave my dad a kidney in the end. We always knew there was a risk my Dads body would start to reject the kidney. Sadly this was the case. My Mum’s kidney didn’t work. She did all she could to help my Dad. While all this was going on. I was still working and studying. It was a hard reality that we needed to keep on going. It was sad what was happening but they both gave us life and in life anything can happen that’s not in your control. So it was important to carry on.

Even with all this going on he still made us laugh and always seemed to see the funny side. Yes he had his down days. I would just stay out his way. He he!!

My dad then turned to Haemodialysis. A machine would act as his kidney and clean his blood. I did accompany my dad to Exeter for some of his treatments. He did have to travel to Shepton Mallet sometimes by taxi. He then got lucky to find a dialysis center closer to home.

More news came along. We were then told he had heart disease. Not only that we found out later on he had Cancer to. I have no idea what was going through his head every time he was told this type of news. He could have given up, broken down may be. But all I could see was a man that kept on going and a man that kept laughing.

He then started to Haemodialysis from home. With my mum they were both taught how to self-care at home. This option did make life that bit easier and my dad did have more time and flexibility in his life. I was just starting to learn how it was all done then we were told he had to go for an operation in Exeter.

The Year was 2015. He was in hospital on March 12th. Ready for another operation. He developed encapsulating peritoneal sclerosis. There were some complications with my dad’s operation. He had to be transferred to Manchester to see a specialist.

In the months that came we traveled to and from Manchester. Some days we spent seven hours in the car just to see him for one weekend. We then spent another seven hours in the car on the way back. Traffic was not easy on us. I then returned to work the next day. I stayed up for a whole week once with my daughter. To keep mum company.

This Post Has 12 Comments

  1. Avatar

    Stay strong love your dad would be proud . Your family are here for you xxxx

    1. MyalgiaFibroWarrior

      Thank You Lovely. You have been a great support to me. You are never afraid to tell me how it is either.
      A big big thank you to you xxx

  2. Avatar

    What you are setting up is a wonderful thing. By sharing your story you are encouraging others to share theirs, stand up and be counted. As you are there for others so they will be ther for you. A fybrowarriors community, a support group for those dealing with invisible illnesses we will have a positively impact.. xx

    1. MyalgiaFibroWarrior

      Sanch you are a great example of a fellow warrior to. You have achieved so much regardless your condition.
      I am glad you have agreed to be part of the support network.
      Hopefully we have started something that will actually help others not just in the UK but around the world.
      Much love xxx

  3. Avatar

    Awwwww…bless you for sharing your Dad with us. He sounds like an amazing man. May he rest in peace…and may you find peace, sweetheart. I had a terrible time too adjusting to fibro when it hit full force after a burnout when I was 37. Always had problems that were painful and weird since childhood, but everyone including myself just ignored them really, or tried to anyway. I’m 52 now and I can promise you this: you will learn to live with this. You will learn how to cope. It starts with acceptance…And not pushing yourself over your limits. Thats the golden rule. You need to set boundaries even if it goes against all you are made off and believe in…thats tough. But if you dont, you will be your own worst enemy. 12 spoons is all you get, each day. Use them wisely and you will live this life with fibro as best you can. Push, and you will only hurt yourself more. The choice is yours…yes….it is yours, nobody else has a say in this. Only you know when to say, enough for now. You will get the hang of it, I promise xxx

    1. MyalgiaFibroWarrior

      Thank you for your lovely comment. You have been a fantastic follower.
      Don’t give up on yourself either. Its never too late.
      Thank You once again.

  4. Avatar

    Your Dad sounded an amazing guy! Im sure your family must of been a huge reason he kept going and smiling. I realise life seems to take the good souls first. Living with a chronic illness makes you so aware of what many just take for granted which in turn makes you more sensitive and kind. To start a support group is a lovely way to reach out helping others to not feel alone. Xxxx

    1. MyalgiaFibroWarrior

      Thank you Sarah. I’m glad you are part of it all also.
      It’s just not my website but it’s for everyone. Any suggestions are always welcome.
      You are a great example yourself.

  5. Avatar

    Well done for sharing your story hun. Such a strong woman who still sees the positives in everything and you are a massive inspiration to others! What a great website promoting awareness of conditions so that others will be encouraged to share and seek support. Just fab! 🙂 xxx

  6. MyalgiaFibroWarrior

    Thank You lovely lady for your comment. My hope in the future is, that this site will be expanded to help everyone in any circumstances. Even if its just to talk to someone. Your support means so much. xxx

  7. Avatar

    You are one strong lady, so proud of you hun x

    1. MyalgiaFibroWarrior

      Thank you lovely. You have been such a great support. Feels like I can at least put this chapter to bed and focus on the future now. Hugs xxx

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