Sunday, 29 December 2013

Update: Activity Aftermath (Christmas)

I'd like to start by saying that I hope all those that celebrate Christmas had a great day; I hope readers with chronic illnesses managed to have a nice time and their illness didn't intrude on the day too much. I hope at least one thing made each of you smile.

In comparison to how I had been, Christmas Eve and Christmas Day were an improvement for me health-wise, which was great. I still couldn't do a lot, but I went to a spa on Christmas Eve for a flotation treatment and gentle massage which was lovely and to a Carol service at Church in the evening, and I got up at 8am and stayed up until 10pm on Christmas Day (with plenty of rests (..well actually pretty much continuous resting..) on the sofa in-between), so although both days were quiet and spent mostly horizontal, they were relatively good for me at the moment. Pain levels weren't too intrusive, although my headache was quite nasty by the time I eventually relented and went to bed on Christmas Day. Big events aren't easy while feeling unwell but the consequences can be even more difficult to endure.

The day after a big day is often a difficult day for chronic illness sufferers, particularly ME/CFS sufferers, as post-exertional malaise is a hallmark of the illness (feeling rough as a delayed result of doing more than their illness permits). Post-exertional malaise is believed to be as a result of failure of mitochondria (working parts of cells that generate the 'energy' that the body requires to work). If you use more energy than your body is able to produce, you have limited energy for a few days while your body catches up and replenishes the stocks. Oversimplification obviously.. It's sort of like an energy hangover.

Days like Christmas Day often tempt people with chronic illnesses to push their boundaries. They try to ignore aspects of their illness and are often a bit relaxed about sticking to their limits. Sometimes we later regret it, other times it's worth it.

I spent the 26th with chronic illness sufferers very much in my thoughts, wondering how everyone was feeling and coping, and hoping no-one was regretting their exertions the day before. I didn't feel great- I was exhausted and dizzy, and certainly wouldn't have been well enough to leave the house, but could have been worse. I was quite relieved really, because it wasn't anywhere near unbearable. But payback is often delayed by up to 72 hours, and there can be a prolonged flare of symptoms if you've really pushed things, so I wasn't out of the woods just yet.. Compared to how I was a few months ago, I'd barely done anything over Christmas, but knowing my current baseline is so low that even sitting up too long increases symptoms, I knew a further flare was a possibility.

Sure enough, the next few days were equally bad, if not worse. I was nagged by several family members to get up and dressed about midday on the 27th because the plan was to go to the pub for lunch. They assumed I was well enough. I was annoyed because it would have been so much easier for me if they had given me time to wait for my pain meds to kick in fully before getting up. Instead I ended up slumped in the bottom of the shower crying in pain trying to wash my hair. It was agony. It would have been a better idea to actually say I wasn't feeling well and work out a more suitable plan/timescale, but I just got inwardly cross and ended up in a bad mood. I then ended up agreeing to go into town (obviously on my scooter, I can barely walk at all these days) because I thought it might raise my spirits and also because they were wanting me with them to make parking easier (I come with a blue badge, it makes me a significantly more desirable outing companion this time of year); I did get them 3 hours free parking, but I didn't enjoy it. It was crowded, shops were even less accessible than normal because shops seemed to have tried to put out as much stock as possible and people made it difficult to get around. There weren't sizes on the tops of hangers and my arms were too tired to move each individual item to see what size it was, so it was pointless really. It just irritated me further. Plus, I wouldn't be pleased with how I look in anything at the moment because I'm severely underweight. I'm actually the lightest I've ever been (since I grew up, obviously), so that's pretty scary..

The 28th was awful. I was in bed until gone 7pm, lying staring round my bedroom and listening to a bit of music some of the time, drifting in and out of deep rest/fitful sleep. I then lay on the sofa in a lot of pain watching some TV until half 11, and I wish I'd just stayed in bed, where I was a bit more comfortable, because then- perhaps- I wouldn't be in so much pain now. I don't think I'll be getting to sleep for a while.

The plan is to go sales shopping (in a bigger city) tomorrow if I'm well enough. But I don't think it's likely. Plus, I desperately want to be as well as possible on the 31st because I'm going to London to see a show, so I don't want to push things too much with only 1 day afterwards to rest.

I'm also starting to get concerned about starting back at Uni. It's only 8 days until my new term starts. I'm simply not well enough at the moment. If I'm not well enough to start back as planned I don't know what I'd do, I don't know who I'd need to contact, I don't know what my options would be. I also need to be at my Uni flat to get to all my hospital appointments, which complicates things further. I just hope things pick up over the next week. I think I might be being unrealistic though to be honest, given how bad my payback is from such basic things at the moment. 

I always find it helpful to focus on the memories of the day you enjoyed to help you get through the difficult days that follow. Obviously ideally these difficult days wouldn't exist, and pacing is great to try to prevent/lessen these, but not always practical, and limits can be lower than anticipated, so I think it's important to accept some degree of payback as part of our current reality. I actually think it's perfectly acceptable to knowingly cause payback by exceeding my own limits to enable me to have a life sometimes, and I doubt I'm the only one...

Payback is just part of my life these days- I try to expect it, accept it, learn from it, and move on. Easier said than done sometimes though..


  1. Hi Jess, I've just decided I am going to try to record my return to health and found your blog. I know it's hard for you but it's such a relief to read that other people are experiencing the same things that I am. I am returning to work tomorrow after nearly 6 weeks either off work completely or working a few hours a day, and am dreading it, so really understand how you feel about going back to Uni. Best of luck :-)

    1. Thank you so much- it's nice to hear that other people can relate to what I'm going through! :) Best of luck for your return to work- I hope it goes well! And thanks for wishing me luck with Uni! Eek! Xx

  2. Jess - not sure when or if you are going back to Uni this week. Good luck if you are, but I do agree with the advice from one of your other followers who was urging you to put your health first - Uni will be able to defer your year, won't they, if you decide to pick up again in October? I was OK at work on Thurs and Friday but major relapse this weekend, been in bed all weekend and had to send my 2 boys to their Dad as I couldn't look after them. Found myself fantasising about having a catheter fitted so I wouldn't have to get out of bed to go to the toilet! Will have another go tomorrow and see how I go ... x

    1. Sorry I never replied to this- fail! I did read it at the time though :) You may have seen that my return to uni didn't go well- lasted 1 day before problems, so I'm now on medical leave until September.. Not ideal, but one of those things.. I'm sorry you were having a rough time- I truly hope things have improved? And I totally understand the difficulty getting to the toilet- ugh! Such an effort at times... Hugs x