“Let us make hay while the sun shines.” — Miguel de Cervantes Saavedra
The weekend I just had was far from typical. I managed to have a “real” weekend, you know, like “normal” people do.
My health has improved dramatically over the past few weeks. Why? I don’t know. For how long? I don’t know. What I do know is I am going to grab this good spell with both hands and hold onto it for as long as I can.
Actually, thinking about the past few days, I realise I have done more in this week, than I have done in more than 12 months. This really is a marking on the calendar moment.
Monday 20th February
I worked from home as usual. At 2pm I had a 2hr long meeting with my tutor, consisting of an oral assessment and feedback from my first assessment. “It’s fantastic”! she said. “You can use a lot of the sources of information you found and put it towards others units” I was relieved to hear this as I was absolutely dreading it, it being my first assessment since I left school.
This might not seem noteworthy to some but chronic illnesses sufferers will understand what I am about to say. I managed to eat dinner at the table with my children, instead of setting their plates down, then making a beeline to sit on the couch while they ate. My appetite has improved which is highly unusual. I normally have no appetite at all. Probably because of the turmoil and pain my body is in. I managed to finish the evening off watching some tv with my boys before heading to bed. Normally after dinner it’s straight to bed for me but not today it wasn’t.
Tuesday 21st February
Not only did I manage some grocery shopping I managed to go and collect the cake for my son’s 10th birthday. Also a quick walk to the post office to send a parcel to my friend in Norfolk. A late Christmas present. Luckily for me she understands my ill health and there’s never any pressure for me to be on time. I am the same with her in return. Snail mail we call it. It’s always a complete surprise when one of us actually receives the item we said we would send. My friendship with her is easy, uncomplicated and straightforward. It’s how genuine friendships should be. She’s been a great support to me. And a real cheerleader of my Fibromyalgia social media and writing.
Another night at the dinner table was had eating with my boys, again this is something that rarely happens. Once they were both in bed I set into wrapping the presents in preparation for tomorrow, normally something I would do at the very last minute.
Wednesday 22nd February
An early start as the birthday boy was up early, excited to open his presents and cards before chocolate spread on toast for breakfast and off to school. My next move proved to be unwise. With my parents coming round for a chippy tea I decided to deep clean my kitchen. I would end up paying for this dearly in the coming days.
Fish, chips and birthday cake was had before my youngest and my mum dashed off to The Boy’s Brigade for the evening. The kitchen looked like a bomb had hit it with chip wrappers, dishes and crumbs everywhere. I tidied what I could before collapsing on the couch for the rest of the evening as the fatigue and pain hit me like the proverbial tonne of bricks. I didn’t sleep well due to being in so much pain. I was still awake at 4am.
Thursday 23rd February
Trying to get up when my alarm first went off wasn’t happening. I hit the snooze button at least 7 times before rolling myself out of bed. Pulling my clothes on, washing my face before rushing out the door to work.
One thing after another went wrong and I ended up working until 6pm instead of finishing at 3pm. Managed to eat with my boys again before limping off for a long, hot bath. Unfortunately this didn’t kill the pain. I headed to bed at 7pm barely able to climb the stairs as my whole body ached, especially my back. Deep cleaning the kitchen wasn’t a wise idea. I knew this at the time. I had the motivation to do it so I threw caution to the wind and went for it, despite knowing the high price I would pay later.
Healthy people might see me as stupid for going ahead with the deep clean, despite knowing what the results would be. Especially when they read about how I spent my night in agony with no sleep. A chronically ill person would know exactly why I did what I did.
I had a long night. Writhing in agony. Unable to get comfortable in bed. Tears streamed down my face as I winced and groaned. My pain was at a 10 and nothing was helping.
- Painkillers didn’t work
- Hot bath didn’t work
- Ibuprofen gel didn’t work
- Deep heat didn’t work
- Magnesium gel didn’t work
- CBD balm didn’t work
- Lidocaine patch didn’t work
- Hot water bottle didn’t work
- Muscle relaxant didn’t work
- Amitriptyline (high dose to make me drowsy) didn’t work
I was awake all night. I finally fell asleep around 6am.
Friday 24th February
I had to wake up at 7.45am at the latest to get the boys ready for school. Fortunately they got their own breakfast while I lay on the couch trying to hide the pain I was in from them. Off to school they went.
Once they had left. I headed straight to bed and slept until 1pm. It was my staff night out, I had to meet my colleagues at 5pm. We were going out for a meal then onwards to the rugby club for our staff party.
I went for a bath to try and ease the pain. Slapped on some ibuprofen gel and attempted to get ready. It took me 2hrs but I got there and managed to make more of an effort with my dress and appearance than I had in years.
After a few drinks the pain eased. I was able to enjoy my night out. The first night out since before covid. I came home exhausted. Fell into bed and went straight to sleep. The alcohol and lack of sleep probably helped
Saturday 25th February
I made it from the bed to the couch. That’s as far as I went. Spent the day in my pyjamas. Still I was happy though. I had already achieved more this week than I had done in years. I could hardly move because I was in so much pain. Still paying for overdoing it on Wednesday. I said that my choice to deep clean the kitchen was unwise. I knew that I would have to pay.
Sunday 26th February
I woke up late morning. Struggled to get out of bed. Still sore and still from Wednesday. My parents came past and took Johnny and I to a nearby beach. We hadn’t planned on going a long walk but we did. I thought why not? It’s better than sitting on the couch or laying in bed all day. We ended up walking for 2 1/2 miles along the cliffs. It was a glorious day. The sun was shining, it was warm and there was no wind. Which is rare in Orkney. I completely forgot about the pain I was in. The scenery and the sound of the waves crashing against the rocks was a welcome distraction from how I was really feeling.
When I got home. I received an emergency phone call from a colleague who required assistance with his travel arrangements. I managed to deal with it fairly quickly before it was time for dinner. I managed to sit at the table to eat before sloping off for a long, hot soak to soothe my aching muscles. As I write this it’s 2am. I am hours away from sleep.
Thankfully I am sitting here feeling happy, like I have really lived this week. Something I rarely do. Usually my afternoons, evenings and weekends are either spent on the couch, in bed or sleeping.
My mood is the best it’s been for months, my overall health is the best it’s been in months, I’ve been the most productive I’ve been in months.
Should it all end tomorrow with me reverting back to the miserable, bed ridden, unproductive person I was a few weeks ago. This week will still have been worthwhile. Because I have precious memories with friends, family and my boys, as well as beautiful photos to look back on.
Finding a balance with chronic illness seems impossible. It’s extremely difficult to stop yourself from overdoing it. We just want to make hay while the sun shines. We want to live, not just exist in survival mode. We also have to do all this whilst being judged by all the doubters. They see us as lazy, drug seeking, hypochondriacs, that seem fine one minute and not the next. We shouldn’t worry about their opinions. They don’t have the capacity to understand and they never will. There’s nothing we can do to change it. What we can do is create awareness, I do this by sharing the reality of life with chronic illness on my Orkney Fibromyalgia Sufferer social media platforms. You can find links to all of them below.
“Dance like nobody’s watching; love like you’ve never been hurt. Sing like nobody’s listening; live like it’s heaven on earth.” -Mark Twain.