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A Piece of the Puzzle…

Firstly, thank you so much to everyone who took the time to read my first and second blog entries. I have been overwhelmed with the support that people have given me. Until the last few years, CFS/ME and Fibromyalgia were not recognised as health conditions as the cause and presentation of them has been under researched. For that reason alone, it means so much to me that I can contribute to raising awareness.

Unfortunately HOWEVER, I can only share one piece of the large puzzle. This is my experience and journey and it saddens me that the things that have helped me and my recovery will not help everyone. We are all unique and CFS/ME and Fibromyalgia both present differently in each individual (the joys of the conditions!). Some people are bed bound for years, unable to hold their heads up and I am so thankful that my symptoms do not present in that way.

I was told recently that I am a fool for thinking that my positivity was enough to help everyone but you know what? Who cares?! If I can inspire or give hope to even one person, I will be happy as I know that hearing other people’s positive stories really helped me when I was in such a low place. When I was first diagnosed, I frantically searched forums for answers about whether I would ever improve. Although those groups proved to be very useful and supportive, what I found was that most people on them are equally as sick, also looking for answers. As you can imagine, that didn’t do wonders for my mood. I am SO determined to continue my recovery as I feel I finally have my life back and I WILL show it is not always doom and gloom.

When I was diagnosed, I was referred to the Persistent Physical Symptoms Team which was great. As part of that, I was invited to join group sessions over a period of eight weeks where I learnt techniques to manage and talk about my conditions. Although these tips (especially pacing!) have proven helpful for me, what I found most useful was meeting a lovely bunch of people who just ‘get it’. But do you know what the stupid thing was? Before going to my first session, I was soooooo nervous! I was actually worried that I was not ill enough!!! Isn’t that ridiculous?! As I turned up, I was expecting to see a group of people who were miles older than me, with crutches and in wheel chairs. I know I have days where I can’t get out of bed, but even at that point in my recovery; I did not use crutches… I just couldn’t stand for long periods and my endurance for walking wasn’t great. Of course, we were a mixture of ages and all at different stages of our journeys. And guess what? None of us looked physically ‘disabled’.

The strange thing about my health conditions is that my symptoms constantly fluctuate… you know… just to keep me on my toes…

I have days where I look like this (the days you see me!)…

20170318_163920

This was taken last week when I was well enough to go for a few drinks with my brother for his birthday.

And days like this (looking good huh?)…

20170323_111754 1

This was also taken recently…

And sometimes, my body likes to go from one to the other in the same day! Sooooo much fun…

BUT I started off being like the second picture all of the time and now I only have the odd day where I am like that all day. The rest of the time, I am completely healthy and can do workouts until I look as good as this…

This does not mean everyone is like me though and I continue to preach that we are all individuals and we need to listen to our own bodies. With the help of Garry (my personal trainer), I am now learning my own limits (read more in ‘The start of things to come…‘). It is important that anyone reading this only goes by their limits and their body as sadly, doing too much can do a lot of damage. I also repeat; I may relapse in the future… sometimes it can be years later and I may relapse worse but I am NOT going to live in fear. What would be the point in that? I may be fine forever (fingers crossed) and I am being very careful to listen to my body and rest when I need to (this time! Hehe)!

 

Amy x

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8 thoughts on “A Piece of the Puzzle…

  1. Hey 😊
    I have just read all 3 blogs & love love love your positivity & desire to ‘help yourself’ 👍🏼
    I completely believe that our minds have the power
    to help us physically improve our conditions & have been following a new food regime in the hope of finding my own personal trigger.
    I walk the boys on good days & have started yoga too .. I will touch those toes!! (One day!)
    Keep blogging & keep doing what you are doing for YOU xx

    Liked by 1 person

    1. Thank you so much for reading and for your kind words! I really, really appreciate it. Good luck with the new food regime. I will be posting more about what I ate nowadays in posts to come! Also, that’s great about the exercise. Keep going! It may not seem a lot when we compare ourselves to others but it is a MASSIVE deal for us and you are doing so well! Stay positive xxx

      Like

  2. Amy you’re awesome, you never bat an eyelid at the challenges set before you ( apart from the dreaded steps but you killed that) and you’re now 2 weeks without any help from the local chemist dispensary ..ie the GP 💪💪💪💪 Keep it up and I’ll be back soon to fees off of your positivity

    Liked by 1 person

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