Firstly a massive thank you to every single person who has left a comment on here for me. It has really lifted my spirits to hear from you all and you really such a lovely bunch! Finally a massive thank you to my Samuel for being amazing as per usual and my Lena and April – two perfect Carers.
These past few weeks have been quite a challenge with the joys of severe M.E. I have recently been diagnosed with dystonia and am awaiting to be put on medication to help control the symptoms. This all started from taking an antibiotic at the beginning of the year that didn’t agree with my body and BOOM I have a jaw that likes to try and dislocate when the jittering gets bad. Previously, I had muscle spasms but not quite as bad as this. On top of this, I had paralysis and all sorts of nasties as I kept crashing against some pretty huge waves.
I had so many plans that got cancelled, I just about got to say goodbye to my close friend, Nick, as he goes to teach in America. If you have read A Girl Behind Dark Glasses, he is the infamous best friend in the book!
My main plan was to try and get to my brother and sister-in-law’s flat to be able to go to my nephew’s christening this coming Sunday. Despite not being at my best, I am a LOT better than I was so I took the chance and came to Lily and Henry’s. It really was the best decision that I could have made because I have been able to rest properly yet still spend some time with my in-laws.
This means spending a few moments with my adorable niece and nephew, Nellie and Oakley. Nellie is that wonderful age where she is inquisitive about everything and a mischief! Yet, when she saw me lying down horizontally on the sofa, she copied me. Of course she is only used to seeing me lying down so it doesn’t seem odd that I’m like this. The beauty of a little one’s thoughts.
Yes, I have still been crashing and in regards to my setback, I’m still in it but just about coming out the other side. I always feel it is better to crash with good reason rather than just crash no matter what.
My biggest lesson has been patience and it reminds me of the song that features in Unrest by the talented Ren Gill. Patience is such a powerful song and describes my life so perfectly right now. Learning to be patient with your body is so important but is the hardest lesson to learn. When is it being patient or falling deeper into a setback? My constant question. The song says ‘slow down, it takes time’ but I never know how much time it takes. Does it just get better without pushing it at all? It’s an ongoing question for me but I find that for me, I have to pace to get back to where I was and to get any progress. It’s just a slow slow journey.
I’ve included the song in this short video, please watch to the end for the absolute cuteness that is Nellie! Now all I need to do is get to this Christening… no matter what I know I’ve tried my absolute best to get their and that is all I can do.
Some of Patience that speaks to me:
Because I’ve got the strength of a mountain
I’ve got the courage of the deep blue sea
I have got the heart of lion
And the stars burn brightly inside of me
And although you test me my god
I stand so proudly can’t you see
I’ve got the strength of the mountain
And I take all you throw at me
Video will be uploaded soon
Oh, words fail me – as ever !! Yet you, with even so much more to contend with, seem to be able to write so eliquantly about living with this hideous, misunderstood disease . I’ve just finished reading your book. Ah! Admit it took me a fair while, partly due to my own physical problems, mostly because I had to keep putting it down, the tears blocking my vision & the way your descriptions resonated with me. Jess, that is one fantastic piece of writing (your Gran will be SO proud of you?) . M.E. Is SO awful, but ALL you’ve gone through is So So sad. Yet, you keep so positive, all you do, & your ability & attitude are humbling to me. Truely, you are an Incredible human being, I have So much respect for you & all you do. Truely you are an inspiration to me.
I struggle much with my health & sadly now find myself rather alone in my struggles. ( lost both parents last year, daughter not close, no other nearby family, lost mates, no position to make new ones. I now on top of everything else am rather aggrophobic – don’t have strength or nerves to use elec scooter & cant currently drive—— oops sorry, that all sounds like grumbles!). But, I do, like you try to be positive, reminding myself how strong I am, regardless of limitations. When I get too ‘self absorbed (normally due to excruciating pain & noise overload etc.).., I think of you & people worse off than me.
Thankyou Jess, The Girl Behind Dark Glasses Is an incredible poinyant well written book, and Thankyou for your inspiration.
I’m sorry to hear you gained, yet, another condition, my healing wishes go out to you (Few years back I qualified as a holistic, spiritual healer, when I can I still use my learnt knowledge to give & send out healing to others). I Truely hope you made it to your nephews christening, & can hold up even when your best friend leaving for america. Not sure how to end this, because, words fail me, just big Thankyou and All best wishes ???
You are an Everest, babe xxxxxxx