For someone with Lupus I have managed a ridiculous amount today. I shall explain later and you may think it's a trivial amount but let me tell you I am EXHAUSTED! A day in the life of lupus, fibromyalgia, MS or whatever chronic illness you may be fighting, is so unlike my friends days or my loved ones. So to give you an insight I have written it down for you.
So here goes, this is a partially documented day of mine....partially because I lost track through to the dreaded brain fog!
The 9am Ultrasound Appointment
I would like to start with, mom if you reading this it's not because I'm pregnant so please relax!
Today I had to get up early. In fact my alarm went off at 5.30. Why so early? Well I had to get my body to wake up, I had gone 24 hours with no painkillers and I was in agony by this point! If I hadn't woken up so early I would never have made it!
I managed to get into the shower and hour later! Yes it takes me a whole hour to move 20 feet to the bathroom! When you are stiff and sore you have to take your time!
By the time I left I had literally reached the end of my tether with the pain! I was grumpy, irritable and utterly lost within a whirlwind of joint swelling. To make this more depressing the hospital looked like it hadn't had a lick of paint since the 1940's. I mean I pay my taxes, come on NHS! Sorry small rant there!
Then the wait began again. Waiting is the worst part about hospital appointments because it means you can think and thinking leads to fear. I had to wait opposite the room where they were about to tell me if my bones are severely damaged! Not helpful at all.
Finally after 30 mins waiting and panicking I was met by my new doctor. He seemed nice, not chatty but nice enough! The importance of having a doctor you can speak to is of the uppermost! In the end they will see you at your lowest, happiest and parts of you that you don't want anyone to see!
The scan was quick, painless and truly bizarre! I actually got to watch this time and that was strange as I could clearly make out my joints, skin and tendons. The worrying thing is that he spent ages on certain bones, muttering to himself and I know that's not great.
Then it was done, I could breathe again but more importantly I could have some painkillers. You may not understand the importance of that but every time I moved a finger I was in tears... So they were really needed!
Then came the afternoon
I got home, nauseous and fed up. But life doesn't end at the hospital...oh no I had tidying, shopping and a hair cut to get done. Through my cloud of tiredness I had to drag myself up and put again. The pain in my knees was so bad that I had to stop in the middle of the street and wait for it to go! Bit odd looking so I pretended to be on my phone.
This month I have my birthday but also others! I had to push through and get cards, baking materials and a haircut as I was starting to resemble an actual wolf! By the time I sat down in the hairdressers I had to appologise incase I actually fell asleep. I also had to appologise because my hair has started to fall out again.
The sit down during the cut was amazing! I had a head massage and a glass of bubbly...well it's nearly my birthday....and for a short amount of time I could just be me! Not me with lupus, this lady didn't know me and she spoke to me like a human being...you have no idea how important that is. We talked about holidays, flats, food and her going out tonight! It was great and I am so thankful to her for giving me that.
And now I am home. My whole body aches and writing this has been hard! My eyes are tired, my head is throbbing and my back is killing me....but I am smiling, I am happy and I feel like a human being!
What are your days like?
