Monday 10 February 2020

The start of my journey

Lying here on the ward in rehab, I reflect on my first day. My mind whirls and is overwhelmed with information, possibilities and hope.

My stay didn't start as I had hoped. My letter said I was here for three weeks but it was a mistake and I'm only here for one week. The hope of trying to change my life dwindled in that second, the second I felt like the rug had been pulled out from under me. I could of completely given up in that very moment but I've fought to hard to stop trying. Ok so I won't be here for three weeks but I'm incredibly lucky to have another chance. I can see the negative or the positive. I chose the positives.

My one week has been tailored to me. I will learn how to pace with my condition so i stop wearing myself out, learn new exercises and i will have the input of a health phycologist. I've been searching for one for years but they don't have them in my area.

So now as i close my eyes to sleep and the day descends in to darkness, i will wake tomorrow to start a new page of my journey.

Tuesday 4 February 2020

Chronic illness acceptance

Today I had a reality check. It's time to stop searching for a magic pill to cure my chronic illnesses and accept them as what they are.

I didn't realise that I haven't been coping for a while since I'd tried some new medication. Mum came to the rescue today as my brain was so foggy that i just couldn't figure out how to have a shower.

I've fort my conditions for years but what I haven't done is accept them. This is key to any chronic illness. You have to work with it or it will bite back 10 times worse. 

Although my daily quality of life isn't what i want it to be, i only realise that its actually not to bad after I've tried a new medication that wrecks my brain and body. I'm always chasing a new treatment to help my fatigue and allow to me be 'normal' but the grass isn't always greener. 

So after 16 years it's now time to work with what i have. I was basically born with chronic fatigue so it's something i will never not have. Although my consultant is hopefully going to test me for sleep apnea as it's common in Ehler's Danlos syndrome.

Next week i embark on a new adventure. I'm off to rehab at Stanmore for three weeks. I did the course previously about 4 years ago but it just wasn't the right time for me. This time I'm ready to get the most out of it.

I found it very demanding before as its a busy schedule with lectures, physio, swimming and phycologist so I will just have to take rests when i can. Last time i had to skip a few classes so i could  rest.

My goals are also different this time. I'm not going there to walk learn to walk again. This is a massive thing for me as doctors in previous years have seen it as priority, although I've only ever been told my best hope is to stand. I had a chat with the physio that i saw last year and I'd burnt myself out because i thought i had to learn to walk again. It was actually pressure from other people that i had that in my head. The physio said one thing that changed my perception' you can live a perfectly normal life from a wheelchair. ' From then on my priorities changed.

I have these conditions but i want to be the strongest i can to hopefully help the fatigue and pain as we need our muscles to take over from ligaments. I will never been bodybuilder strong but i can be strong within my own limitations. I also want to learn pacing techniques as I'm always in the boom and bust cycle which is more busted at the moment. My next goal of acceptance is to also accept that it's ok to put myself first rather than trying to please other people. I also need to stop striving for the life i once wanted. I can still enjoy life it will just be different path and that's ok with me.

Sorry this turned into a rather long post.

Have a good week everybody.

Love Hayley