The Letter – #friends #love #Family #truth #write #openess #chroniclife #autoimmune #spoons #howitis #lifelessons

To my darling friends and family,

Some of you may have noticed that I haven’t been in touch much this year and you probably only hear from me via Facebook or social media. You may also notice that I try to avoid talking on the phone or visiting a lot this year and I think you all deserve to know why, and because you mean so much to me I want to try and explain it as best I can.

This year is a very hard year, I know we all have years that test us, and this year is testing my limits of patience and suffering. I have had many tests, flares / relapses and drugs to contend with this year and they take a deep toll on my body and my emotions. I am doing the very best I can and I am proud of myself, and Derek, for how well we keep going under such pressure. I guess this is how we learn what true love is and what really matters. I am glad I can still learn things no matter what life puts in my way.

I avoid talking on the phone as I don’t want to drag you into the struggles as they will be meaningless to you but they can turn me to tears if I was to try and talk about them. So I don’t. Also I battle with constant mouth ulcers and blisters which makes it very difficult to speak and joint and nerve pain makes it harder still. Please believe that there is nothing that we aren’t trying or doing in order to better manage, improve and treat our illness. NO stone has been left unturned and no treatment (medical or natural) has been overlooked.

I have been busy though, trying to write for various support groups, websites and dealing with the progression of illnesses. In fact I am never lonely or bored. I have also started some wonderful support groups for those affected by Autoimmune diseases so that they dont feel lost and alone.

Most of my communication has had to be online and I know I am blessed with many wonderful friends and loved ones; as well as other “sufferers” who I include as my nearest and dearest too. We all help each other so much. I try and balance the energy I put into my interests (advocacy, art, garden, furries and you all) and still make plenty of time for rest and treatment.

I try and post the odd picture of myself and selfies in the hope that it lets you know I have not fallen off the perch or been kidnapped by some strange cult, but I tend to only show the pics on days I am at my best. The rest I really try and shelter you all from. They are hard to face and hard to share. This doesn’t mean that I am not doing my best or have given up on life… in fact the opposite is true… I work hard just to stay a part of this world and I always will.

Those that knew me prior to getting sick will still find all the traces of my former self in my humour, my heart, my interests and my personality and but even those who have just met me will also be aware how different life is now and how experience (pain and illness) changes people in very profound ways. I am different now but I try and blend the best of both lives and always strive for peace and gratitude.

The most important thing that I would like you ALL to take away from this post is that no matter how much you hear from me, communicate with me or keep in touch with me, you are all incredibly precious to me and my love and affection for you has never changed. I will always love and appreciate you, miss you, be watching your posts, be hoping good things are happening to you, be remembering all the times we shared and will always, always be your dearest and devoted friend…no matter what.

All my love,

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