Dear Diary: 12 December 2023

When I had my crash a few weeks back in September, I wondered when I went back to work three weeks later that I was maybe coming back a bit too early – but it’s very hard to tell. At the end of the first week back I was feeling really rough again (maybe earlier than that). I knew it wasn’t going to be too long before I went over again.

The last few weeks have been a “trial” and only the thought of having another two weeks off at the end of December enabled me to keep going. My line manager leaving removed a support mechanism for me which made me concerned. Concern = stress and that didn’t help. One week I had something I needed to do Tuesday evening so to “prepare” myself I tool the previous Friday, and the Monday and Tuesday off as leave just so I could do what I needed that evening.

Taking time off as leave to get over bad spots is becoming a habit – half of my leave last year was used this way. It’s frustrating to have to leave “emergency” time in my leave schedule but its a necessity.

Last monday, 4th December I was feeling about the same as usual. Had spent most of the weekend in bed in preparation for the working week. In the evening however I suddenly found that I needed to put a “flat-pack” bed together for my daughter. I wasn’t planning to do it that day – and was not prepared for it – but the decision was rather taken out of my hands.

Putting furniture together isnt usually a major thing. However this was a LARGE item and in total it took around 4 hours (with regular breaks). That wasnt counting the 2 hours going out to find some compatable screws (they wern’t missing but I didn’t like the way they had the bed slats fixed so I went out to get some screws to fasten them “better”) and to do a bit of shopping while out with my wife.

At the end of the evening I was VERY worn out. 4 hours of physical work that I was not prepared for. I would have chosen to do it on a Friday – to have the weekend to recover. The next day I was aching a fair bit – but it wasnt until mid afternoon that the PEM really kicked in and I was in agony. It felt like I had run a marathon. Every muscle in my body was on fire. Fortunately I had previously been prescribed some more Codine which I am sure helped – but it was still pretty unbearable.

I was unable to work the next day – and was off until the weekend. For most of that I was in bed – alternating between laying down and sleeping, and sitting up and watching DisneyPlus (I’ve seen a LOT of StarWars!). If I sat up too long then I was in even more pain – and if I slept then I wouldn’t sleep as well that night which was a problem anyway.

I DID speak to the Doctor that week and he prescribed me some Gabapentin for my restless legs and I think this is actually working and I have slept a bit better MOST nights since.

The big thing here though is that I really cant tell what is going to trip PEM. Just putting together that bed – I’ve not really had that much consistant pain before that I can remember – it’s very distracting and hard to deal with. I was very careful in building the bed – I took regular breaks and it’s not that it was “hard” work. The hardest thing was screwing in around 100+ screws. Even they were pre-drilled and short 15mm screws so again not hard themselves. For the heavy lifting parts – my wife helped me – so I don’t know why this hit me so badly. It’s very frustrating.

So with three days off last week, I have at least now spoken to the doctor about two of the ME/CFS symptoms: Pain management – I have more Codine – but it’s likely they wont prescribe that again – will have to see. I only take that when things are bad (taken two doses today as I am in the office and that doesn’t offer the same facilities as I have at home – can’t lay down at lunchtime for example). I have also now spoken about the Restless Legs Syndrome and the medication I was given last week SEEM to be helping – so I may get that on repeat now.

I am just rambling at this point and my brain isn’t working so don’t know what I am saying or why……. I will leave it there!