Today has not been a good day in fact that is putting it quite mildly…But thats OK!
When I say I have had a bad day I don’t think people really get it, and before I was a sufferer of this ridiculous illness I wouldn’t have understood either.
Friends, family co workers and pretty much most people you come into contact with only see you at your best, where you grin and bare the pain or other symptoms.
I hate letting people know how bad it can get sometimes and the only one who really sees this is my partner, who really is my night in shining armour! This is for a variety of reasons from not wanting to seem weak, feeling embarrassed not wanting people to feel sorry for me or think of me as their sick friend.
I know I am not alone in these thoughts and that for suffers of CFS/ME or various other chronic illnesses it is hard to express the ugly truth of their condition.
The ugly reality
This morning I woke around 9.30 in agony my limbs felt like lead making even rolling over near impossible, so after lying unable to move for a while I drifted off to sleep again, waking periodically to see if matters had improved.
My partner being the absolute star that he is left me a pint of water with a straw on my bedside table before he went to work. However even rolling over to edge of the bed to have some, seemed like a marathon and made every part of my body cry out with pain.
My phone on my bed using a finger I used the Siri (voice recognition) to play some nice relaxing music, to stop me from getting so frustrated at myself. Using Siri was essential as whilst i could just about face moving my finger by this point, I had as much chance holding anything in my hands or fully moving my arms as I do of winning the lottery, and this was close to around mid day.
By around 1.30 I had regretted drinking the water as I now was desperate from the loo, and undertook the painstaking wriggling each small amount finally to getting sat up right, then once the room had slowed its spinning to only a little, I wriggled little by little to the edge of the bed, wincing with pain with every little movement.
I pulled myself up and leaning against every wall for stability as I very much felt like my arms and legs were made of jelly, and that I very much resembled a fatter version of Bambi on ice.
A little after 2.00 I managed to get to my en-suite bathroom. Woohoo about 10 meters in 30 minute- Said no one ever!
I sat for a while in my bathroom recovering from my 10 meter marathon for about 15minutes, I looked at the shower and would have laughed if I had energy, I then pulled myself up by the sink looked at my toothbrush, but knew I wouldn’t be able get my arms working well enough to bother trying to brush my teeth, so I settled with having a good old mouthwash.
Feeling a little bit fresher, but not much. I hobbled out of my bathroom, I feel I should win an Oscar as I don’t think many 25 year old actors could pull off looking 95 year old this well. If only I was acting! Propped up in the door way I looked at my bed but thought, if I go back I won’t get back up again.
So again slowly but surely I struggled down the two flights of stairs using both banisters for balance, I felt like I was going to throw up as I felt so dizzy. I had a break when I was half way down.
At 3.00 I had finally made it to the bottom of the stairs and stumbled over to the sofa, where I laid down and popped on the telly. I managed to get through about an episode of something but I can’t say what it was or what it was about, call it poor memory, concentration or just the impossibly thick brain fog any type of information had to navigate through for me to process it, maybe it will turn up in a couple of days.
I must have drifted off at some point as I woke up, the TV had turned itself off and my phone which was placed on my chest and not on silent had 2 messages and 2 missed calls, which I slept right through.
I felt horrific (quelle surprise!) a combination of having a flare up but also having only consumed a glass of water and no food during the whole day. Funny isn’t it you need food to give you energy, but when your having a flare up where do you find the energy to make your food.
It was now 4.45 I knew that I had to wait until around 6 for any type of assistance, by body even weaker, I knew I wasn’t going anywhere. I used Siri to call my sister back on speaker phone, and had a chat for a bit until I was too tired to do that.
I couldn’t face leaning forward to reach the remote to turn the telly on, so I stared out the window or watched my rabbit playing in her cage, after a smidge of energy returned I used Siri to call back my best friend, her first words to me was that I sounded crap, and instead of pretending I wasn’t I was honest and told her the truth.
Luckily my prince return bang on time (6.00) and helped me up to the luckily downstairs loo, I cried out of embarrassment and kept apologising before I started to laugh at the situation.
Neither of us could cook, so ordered Chinese food. Luckily there is an amazing little take out that does gluten free fresh everything down the road (Link- Coming Soon). Now sitting up a little more on the sofa with another drink and waiting for food to arrive.
Food came we popped on Scrubs to watch (6.45) and I slowly ate my dinner, it was an effort to hold my bowl and my fork and to chew. I managed to eat half but that was enough soon I felt a little better (7.45), still in pain, my arms and legs feel really heavy and brain fog has subsided to seeing to about my hand rather than to the end of my nose.
So things are on the up!
As the man has a well deserved go on the playstation, I have got writing, this post has taken me several hours to write (on and off), concentration slips, brain fog sets in I have a break and then a start up again. Still unable to move from the sofa unassisted or really lift up my arms or legs, but I am able to sit up on the sofa and move my hands on the key board, so that’s something.
Even on a bad day things are OK
After this the pain, frustration and tears how on earth could I think things are OK?
Well firstly I knew today was coming, I knew it would be be bad because yesterday was a biggie.
We had an away day out at work which involved getting the train at 8am a full day of entertainment, socialising, inspirational speakers and drinking!
Including: Tinie Tempah, Lenny Henry, Jamie Oliver, Madness, Frederik Willem de Klerk, Soweto Gospel Choir, Bob Geldolf and Florence and the Machine.
All of which were amazing but the one speaker that really struck a chord with me was Martine Wright who did the most amazing inspirational speech, which I will talk about in a later post as this one is getting on a bit and I want to give it the justice it deserves (Link- Coming soon).
So was today, a day of pain and frustration and probably a similar few days to come, worth it?
Yes it was!
I knew it was above my limitations, over 50% over my credit/spoon limit and I am paying for it now. But planned to mitigate problems as much as I could throughout the day, for instance I was given a seat in a box, so I managed to have a couple of 15 minute lie downs, I sat down for most of the day, took pain killer and eat at regular intervals to stop crashes as much as possible to make sure I could make it through the day.
But life is for living, you take the ups and the downs. I think at how less frequent these days have become and how it is rare for one to happen unexpectedly and for that I am grateful for, things are getting better for me, 6 months ago hell even 3 months ago I wouldn’t have dreamed I could have managed a day like yesterday but I did it!
So think what I will be able to do in 3, 6, 12 months time. Slowly but surely I will get back to something that resembles my old normal life.