Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Monday, 11 April 2011

Monday, 11 Apr 2011

Bristol Dental Hospital
cc-by-sa/2.0 - © Thomas Nugent -

Had to be up at 5:45am – when anything before 10am is way too early. However, I had an appointment at 10:20am at the Bristol Dental Hospital, which is THE ONLY NHS dental hospital facility for the entire of the south of England, 80 miles away in Bristol. Requiring someone with myalgic encephalomyelitis (ME) to make this journey for any appointment is entirely unreasonable, but what choice did I have? They gave me no choice either, other than the morning appointment and my dentist wouldn’t treat me without me seeing them. Snookered. 

So I caught the 6.51 train and, to be fair, made it in good time and with minimal stress, but there is no doubt that it made me utterly and totally exhausted. It was particularly difficult to deal with and I certainly couldn’t cope with understanding what was said at the appointment or properly advocating for myself. By the end of the day, I could hardly walk and the pain in my legs and feet was unbearable. Fortunately, I had somewhere to stay nearby (without this, frankly, I couldn’t have gone to this appointment at all), but got there and crashed, falling asleep on the sofa. Began to get a migraine type headache in the afternoon, but just had to hope it wouldn't develop as my hosts had organised for us to eat out.

Tuesday, 12 Apr 2011

Definitely did too much yesterday. The impact of the pain was reduced by getting a good 12 hours sleep, but the post-exertional malaise, sore throat, and flu-like symptoms were as bad as they ever get. The migraine came with extreme nausea and a tight band around my head. Couldn’t stand to read, nor look at a computer screen. Got up to get water to take my medication, but had to lie down again immediately and hold my head to stop the pain. Slept for most of the day, on and off. Got up to eat some dinner, but went straight back to bed again.

Wednesday, 13 Apr 2011

Still got the migraine that began developing on Monday. Had to take a Beechams, plus 2 more Paracetamol in addition to the Celebrex, but dare not take more or anything else. Cannot shake this, nor the accompanying nausea. Feel too ill to sit up again and cannot read, look at the computer or even TV. Slept for a short time during the day, but mostly just had to lie flat and try not to be too aware of my symptoms. Back back and hips were so painful, there was little chance of that.

Thursday, 14 Apr 2011

Woke up at 4am this morning after the last 2 days resting. Was taken out to lunch and shopping, but this was really too much for me and I couldn’t enjoy it, but didn’t like to complain.

Friday, 15 Apr 2011

Knees hurt dreadfully today and am tired from such a – relatively – long day out yesterday. To be expected after a day out, though less than usual as I’d been taken out by car. Taken out to do yet more shopping this morning, which would have been OK, if we hadn’t been standing and waiting around. This began the pain in my legs again, so I was glad to lie down again in the afternoon.

Saturday, 16 Apr 2011

Travelled home from Bristol on the train. Neck and knees were painful this morning. Neck, back and shoulders suffered most from trying to manage my bag (basically, I can't manage). Had to walk home from the station, which taught me that I would never be able to manage a shopping trolley too. Got in and crashed and didn’t even have the energy to unpack my bag.

Sunday, 17 Apr 2011

Back to normal: pain and stiffness everywhere and had physical difficulty getting out of bed and getting to the kitchen. Headache, sore throat and post-exertional flu-like feverishness. Pain in legs bad again after so much standing and sitting, as well as in hip, neck and shoulders. Joints clicking painfully again.