I’m aware that the majority of my readers also suffer with chronic illness, so I wanted to share a little about how I got to pull off this weekend. I’m not better, in fact my energy levels haven’t recovered fully from the dive they took over winter. I still rest just as much, if not more, than I did last year. But last year I’d have never pulled this off so smoothly.
Last year I did the same family bbq, and I crashed hard and spent weeks recovering, despite cutting the day short.
I fight with my body less, I sit more, set time limits on activities and try not to feel guilty about not doing as much as mum around the house. I’m strict with my diary, and book it out like I used to when I was working.
7am – feed and pot Riley, breakfast, meds
7-11am – bed rest
11-12pm – exercise Riley
12-1 – rest and a small lunch
1-2pm – rest
2-3pm – 30m playtime with Riley, rest
3-4pm – activity (bath, hoovering, washing, write, research, charity work)
4-5pm – chat with mum and rest
5-6pm – rest
6-7pm – feed Riley, feed me, meds
7-9pm – rest, watch tv or read
9pm – pot Riley, journal, bedtime
This occasionally changes when seeing friends, I’ll get up at 10 to exercise Riley, meet at 11, home around 1-1.30pm and then rest for the afternoon instead of another activity. That’s a standard day for me, but often the afternoon activity will be something I can do sat down.
Being really structured with my day, and intentional around where I spend my energy, I reduce crashes and the severity of them. This means when I do things, I can give them a little more time, energy, cognitive function, purely because I’ve not wasted it elsewhere.
The other change is supplements and nutrition. Now I’m gonna be honest, I’m not shoving kale up my arsehole and snorting protein powder. Low energy, remember? So it’s got to be manageable and manageable for me means convenience.
I start the day with hot water, freshly squeezed lemon juice and a gut healing honey from Just Bee. This is paired with a Belvita breakfast bar and my meds. The supplements I take at this time are a strong multivitamin, I use Oxford Vitality and tolerate this well. I also take 1-2 CoQ10 from British Supplements. Two on days I need to be up and active a little earlier.
Lunchtime I take the second CoQ10 if I didn’t take it at breakfast. Dinner time is just meds. BORING.
At bedtime I take 1 magnesium and 200mg L-Theanine. If I’m going through the withdrawals impacting my sleep, both of those get doubled, if that doesn’t work then I add in melatonin temporarily.
Now the only thing that’s changed to see the improvement in recovery time, is the CoQ10 and honey/lemon/hot water in the mornings. I’d already implemented the strict routine and energy planning, but since adding these my recovery is a lot smoother and I go into less prolonged crashes. I added them at the same time, but I believe it’s the CoQ10 making the difference. It’s also helped me be able to go a little longer when doing activities like this weekend, which is a double win!
The lemon and honey have been great additions though, simply because I have a lot of irregularity and gut issues and pain. These are a lot more controlled now, including the reflux that’s been plaguing me since I was first introduced to Indomethacin in 2015/2016 and it damaged the lining of my stomach. No one warned me to take it with a substantial meal and a stomach protector. Then of course I wasn’t warned about the dangers of long term PPI use so I could keep taking Indomethacin to control the Hemicrania.
Fun fact, my neighbour has major gut and reflux issues and I recommended the honey/lemon/hot water combo to her. She reported last week how beneficial it’s been for her, as did a lady from mums work who we recommended it to also.
I also use my chair more frequently when I go out. Last year when I had it, I’d still try and push through to get round a small shop or if I was just picking up a few bits. Now I don’t fight it, because my legs are worse and I’m conscious of not pushing my body beyond its limits simply because “I used to be able to do this” or worse, thinking I should be able to do something. The self-gaslighting as a disabled person is a fucker.
If I’m just popping to the 7-11 down the road for one or two things, I use my stick, but anything more and the chair gets used. This means less energy spent, less pain, less fall-risks while out or even after at home because I’ve used my legs beyond their “safe” limit. It also means I might be able to pick up a few bits mid morning and make something simple like fajitas or salad for dinner. Two activities in the same day would be a hard no if I’d fought with my legs around the shop.
I want to add that none of this is advice, recommendations or toxic positivity. It’s just what’s working for me right now, and in 6 months it might be something completely different. But it’s important for myself to document what has been beneficial to add/change and in what way.
The routine part for me is easy, I’ve always been keen on a routine and nothing changing which can sometimes make chronic illnesss and it’s unpredictably very challenging for me. I don’t want to have meltdowns and throw toys out the pram, but sometimes that’s where it leads and I just gotta roll with that too.
Yesterday, I managed to pop out for lunch with mum to thank her for her help this weekend (I didn’t have food prep and dishes energy!). I also got to make a little joke as we passed JD Sports; I announced I needed to go in on our way back, when asked what for I told mum I wanted to treat myself to some new running shoes for my birthday. Luckily she’s my mum so she has to laugh at my dodgy humour! Instead I’ll be buying myself my annual orthopaedic pillow replacement and my increasing neck pain is telling me that the current one has reached the end of its usefulness.
None of this is to say that I find these things easy, these days and activities are still really hard for me. I’m still anxious about being seen in my chair, or using my stick – especially when I trip over it or my legs are so bad my arms start joining in. This is a new thing, usually it’s just my legs doing their own thing, but the arms are starting to do similar if they don’t have a job. I took Riley to a secure paddock the other day, and my legs and arms were going wild.
I’m a work in progress, I probably always will be, but I think recording what’s currently helping me is good because I actively avoid tracking my symptoms but tracking progress feels manageable.