This month marks 2 years since I was labelled with chronic fatigue. So, what’s changed?…
Well, I still wake up every day feeling like I should be going to bed. I’m endlessly exhausted and weak. I constantly yawn and breathe heavy when I move about. On a morning my brain craves for stimulation, mainly internet scrolling. I am so addicted! I must have lost hours of my life. Without realising I mindlessly reach for my phone and before I know it, I’m scrolling again! I now have to leave it where I can’t reach it and I’ve turned off all notifications too. Anything to stop this obsession.
Physically, I limit my time with housework taking regular breaks. I make slow progress with everything I put my hands to. Some days I have to just leave it. A full day’s rest, I mean literally sitting or lying down with the TV or some easy music on is the only way to recover and try again the next day. I have got used to what makes me crash now and so I can plan my life better. If I’m going somewhere social, I know I will need to rest after which reduces my fatigue in the following days. A full day out means fatigue will hit strongest after a couple of days and last all week. A weekend away means rest for at least 2 weeks after. I can now plan my life and spread-out events. This means I’m relaxed when I make plans as I know I have time to rest before the next thing. It also means people around me can relax as I’m less cranky.
Mentally I’m doing well. I have my ups and downs but I’m happy enough. Feeling low, I cry if I need and generally mope around. A naughty treat and a good film will soon cheer me up. When I’m good, I like a project. Being creative gives me a sense of achievement. Last summer I stitched my first cushion. It took a full month but very satisfying to finish. Decoupaging gives me my painting fix without the need for precision as I aimlessly slap on the glue. Love it. I also enjoy gardening. It’s slow progress but a boost when the bees and butterflies come to visit. Though I’m limited I can still bake. It can take 2 or 3 days to bake one cake, but it’s worth the wait, definitely!
One thing I really miss is driving. My partner told me it took 6 shops to find me the perfect valentine’s card. While I was grateful, I couldn’t help but hear ‘’I’m free and can go shopping whenever I like’’. I miss shops in town. I last visited a Next store and had to sit down in the shoe section for mini rests. It was so awkward, so the thought of more people and stores with loud music fills me with dread. I sound like an old woman, ha!
Lockdown has eased. Knowing people are now free, while I’m not, is hard to bear. Good news is I’ve found a local dog walking group, yay! They meet only once a month with a short walk so it’s perfect to recover between meets. I love watching Kita playing off lead with the other dogs, it gives me such a buzz. It’s my new escapism from all thing’s illness related, a must for my sanity.
My partner and I have had ‘words’ recently. He started to look tired all the time. I thought he was getting fed up of being with an ‘unwell’ me. Turns out he was over worrying and thought he wasn’t helping enough when actually he was taking over. He now let’s me do more when I can, shopping and prescriptions are being delivered to save car journeys. I’m now feeling more satisfied while he has more rest. Result! We now vow to talk to each other more to save the heart ache too. We’ll see how it goes.
Well, I may no longer have a working-life to balance but I feel I’ve certainly found my illness-life balance at the moment.
Up next, Lumber puncture results. Let’s see what the next chapter brings.
Jacqui x
40 and Fighting 