I have only just discovered 'The Spoon Theory' - I know, I'm late to the party, having dealt with exhaustion for over two years now - and I wish I had read about it sooner, to help me explain my exhaustion to friends, family and work; to describe what I actually feel when I say I'm tired.
For those who don't know, for those who do, just bear with me - The Spoon Theory, a story by Christine Miserandino - a sufferer of Lupus, is where she tried to describe the realties of living with chronic illness to a friend. Miserandino goes on to explain how she gathered spoons and used them to represent units of energy. She asked her friend to walk her through her normal day, taking spoons (energy) away from the friend as the conversation went on. By the end of the day - her friend wasn't able to do was much as she wanted and therefore realised how few 'spoons' people like Miserandino, who live life with a chronic illness, had the luxury of spending.
For example, say each day you had twelve spoons (twelve units of energy) - how would you use them? If getting out of bed is one spoon, showering is two spoons, going to work is four spoons, travelling to work is four spoons, eating and driving are both three spoons, socialising is six spoons. Not forgetting you need to take away a spoon if you didn't sleep well or forgot to take your medication.
People with chronic illnesses wake up with only a certain amount of spoons each day and need to decide which 'activities' are more important as to not run ourselves into the ground.
My weekends are usually spent looking after my children which is a pretty high number of spoons! in order to socialise on top of that, I need to base my plans around the pain and exhaustion. If I've travelled into London for work the day before, my amount of spoons are already low - I probably haven't slept well due to the ache in my legs and the sharp pain in my back so the amount is even less.
Luckily my husband understands and gets it - he ensures he gets up with the boys each day so I can have an extra hour in bed to save energy - he takes on any heavy lifting or house work that will cause me to lose a few spoons in the process. He's empathetic and aware on how the smallest thing can affect my energy levels.
I'm now having B12 injections every four weeks, which is a huge increase from the twelve weekly injections I had before - I was hoping the blood red liquid in the syringe would be vibrant enough to give me a huge boost in energy - but apparently it takes thirty days to begin to work, by which point I've forgotten and I don't recall ever having a huge boost of energy since all this began - I just presume that vitamin B12 is doing me some good.
The nurse that gave it to me was a nurse I hadn't met before, and I hate it when that happens - what I was internally dreading, happened and she asked me why I was having such regular b12 injections, as if they were coming out of her personal wages; 'could you just just give me a brief history' .. yes, I would love to, but it shan't be brief, let me just go back two years...
So I said to her that it should all be on my notes, she turned to the screen, started reading, took a deep sigh and wriggled in her chair to get comfortable while I sat there for 15 minutes reading the posters, waiting for her to get up to date.
I just prefer it when I see my regular nurse/ surgeon/ physio/ therapist/ pain specialist. They know what's been going on and the updates are quick.
I took my boys on holiday over Autumn half term - we had beautiful accommodation right next to the sea. There were lots of activities nearby and it was so close to Halloween so everything was decorated in preparation. It was great to get away and enjoy a change of scenery in the fresh air.
One of the days I took the boys to the beach and perched on the edge of the hill whilst they ran down to the sea, throwing stones into the water, getting their shoes wet, our hair tangled in the sharp breeze with the sun on our faces and skin coated in a layer of salt. They came to sit with me, looking out to the sea and we saw a seal, a few meters from the shore, just bobbing his (or her!) head up to say hello and then disappeared again beneath the surface. It was magical. I took in a few gulps of air, hugged my boys close to me and thought to myself'; no one can take this away from me, no illness, no appointment, no news, scare or worry can take away that I am here, with my children enjoying this moment, with no phone, cut off from everyone else and this is what it was all for; every operation, every scan, needle, bowel prep, stitch and wound; this is what it was all for.
I was diagnosed with fibromyalgia shortly afterwards - a series of phone calls over the half term with my pain specialist and a few questions established the fact that I do indeed have fibromyalgia and chronic primary pain. Its believed that the trauma from the last major operation has caused my nervous system to direct the pain elsewhere; which explains the pain, the exhaustion, the stress rashes, random bruises and dip in mood. I saw it coming and I wasn't surprised.
I think maybe a month ago, that news would have hit me, floored me even, into another fog of how far away a pain free future is and a fog of how unfair it's all been. However, I don't know if it was the sea air, the chance to clear my mind or the majestic seal; but I felt like I could take this on, this diagnosis. It's just another thing for me to spread awareness for, another chance to concentrate on my health, slow down and share my story to help others.
I booked a reiki appointment (always) and bought myself a tiger eye crystal to wear around my neck - a tiger eye crystal works to create positive mental shifts; it's properties help you stay grounded and centered, even if you're surrounded by chaos - which I definitely felt i needed as protection.
I also had my first girls night in, in such a long time with one of my oldest friends - we had a couple of drinks, watched scary movies (for Halloween, but to be honest we are both HUGE horror movie fans that it could have been Christmas and it still would have been the choice in genre), we ate, sang, carved pumpkins and took photos. It was one of the best nights I'd had in a few months and I'm so glad I drugged myself up and dragged my body to go. It was exactly what I needed.
I have another girls night out coming up this week and it's frustrating that I have to time dinners, drinks, location and times based around my pain and exhaustion. But I'm determined to not let it stop me - I'll just have less spoons to use on housework that day.
My brain is also drowning in premature Christmas spirit. I'm in charge of planning, arranging and setting up our annual company Christmas event this year and as no-one really had a charismas celebration last year with Covid, I feel that things are going to go big this year and the pressure is on. I've had the venue arranged since May, so It isn't the organisation that worries me - this isn't my first rodeo - but I'm not as able to run around with my clipboard as I was 'before' - and that concerns me, that this will take me away from my job and hold me back.
Currently I'm nervous and surrounded by arts and crafts in preparation for it - its only a matter of weeks, but I'm going to give it everything I've got and that's the best I can do.
Comments
Post a Comment