Monday, 11 February 2019
Thursday, 31 January 2019
First post of 2019! Woop!
On the last day of January I would love to take a minute to reflect on this first month of the new year for me. So far, 2019 is treating me well but has not been without it's challenges. I have loved January! I've been to the theatre twice which was amazing for so many reasons! Firstly because it's one of my favourite things to do and I haven't done it since I first got ill back in 2016. It just felt far too hard when I thought about going...life as a spoonie aye?! I worried about the travel to and from the theatre, I worried about my pain levels in the old little theatre seats and my ability (or lack thereof) to sit still for hours at a time, I worried about any walking I would have to do and how far it would be and should I not take a bag because of the pain carrying one will give me?! So, alot of it was down to my pain levels because if I take my pain killers I wont be able to concentrate on the show or enjoy it because essentially....I'll be off my tits! BUT...two of my favourite shows were ending on the west end in January and I just had this "now or never" feeling. So we booked it! They were like a week apart and I was already flaring but I was SO excited to be back doing something I love so much and have missed so much! I saw Todrick Hall in Chicago and wow he was just the star of the show! Then I saw Dream Girls and....i cried....alot! Oooh oh also!!!! I was sat across the aisle from a service dog who kept leaning over and licking me which made my night even more lol! (I was of course respectful of the person the dog was with and they actually initiated the convo with me because of the dogue licking me haha and I asked for permission to fuss the good boy).
What I learnt from these experiences was that I dont always have to miss out on things I love, I just need to make adjustments and adaptations so that I can do them safely and comfortably. This is important because ultimately if you go and do the thing you love but youre suffering with intense pain and fatigue and every step of the experience is a struggle, you won't enjoy it or have good memories afterwards. Trust me, I know! I have pushed myself too many times to do this since i became ill and it NEVER ends well! But this time it did! We booked end of aisle seats so I could move my legs into the aisle and not bother people but still be able to get comfortable. I took my pain killers with me, just incase, and made sure I had enough to drink and had eaten before we left. We drove and booked parking ahead of time so that I could avoid public transport and wouldn't have to walk too far. It was great! Success! I'm finally learning from my illness.
January was also amazing because I got to be more social than I have in a long time! A huge part of that was my best friend visiting from Australia and staying with us for a short while. It was so lovely! We had so much fun, laughed loads, binge watched drag race, ate great food, (i got drunk lol oops), went to the cinema...it was just dreamy! We had my other best friend over for a board game night that ended in me sprawled on our front steps wearing a fancy dress wig and beard :') that was the first time I had drunk alcohol in like 6 months and it felt really good to let my hair down with my favourite people!
I've had struggles this first month of 2019 with doctors and my health. I found out that a Doctor gave me tablets that are specifically NOT for people with SLE Lupus. Great. And I've been taking them and I have been very unwell with lots of new symptoms that just wont ease off so now I am worried that the two are linked somehow. It is just so disheartening and quite frankly, terrifying, that so many doctors do wrong by you and can be making you actually more unwell than better. It gets to me, alot. I feel like I am the only one looking out for me which is exhausting but also makes me angry because how can that be when I see a different doctor nearly every week!?
So, January has been a month of fun, joy, struggles and continuing the self-growth journey I started in 2018. So, just how life is really! Lots of highs and some lows and ALOT of learning! I'm really working on bettering my outlook on life with a chronic disease. I'm trying really hard to accept every aspect of me and this illness. I'm also putting in alot of effort into coping better with stress levels. Stress directly affects every aspect of my illness so I really want to learn as many ways as I can to de-stress and keep my self calm and relaxed.
Oh...and what do we think of the outfit of the day?! It was all sparked by my new Lazyoaf purple beret that the boyf got me for Christmas :)
I hope you are all having a wonderful week and I hope that 2019 is full of joy for you all too!
Peace & Love xxx