Sept 2016 when I first got ill
- Treated it as flu. Stayed in bed, ate soup and oranges, went to local cafe when I could (perhaps every 2-3 days).
- By Nov, attempting to go to the odd work meeting.
- Psychotherapy - since 2015, ongoing, weekly.
- Using the Daylio app to track my happiness and health to try and find out why I get ill so much - I have always got ill with flu, or tonsillitis, or laryngitis, more often than the average person.
Dec 2016
- Diagnosed with iron deficiency as the answer to my fatigue. Went on iron pills. They helped a little.
Jan 2017
- Went back to work part time for 3 weeks - sleeping/exhausted in the evenings and all the days I wasn't working. I didn't feel significantly better by the time I decided that I would work, but I thought that the iron tablets would make me completely better while I was back at work. Unfortunately I crashed badly.
Feb-April 2017
- Same as Sept 2016.
- Kept trying to work remotely - exhausted me. Had a fall out with my bosses because they didn't understand why I wasn't more on top of things, even though I'd explained I was ill.
- Started to try and work on my own business (a design festival that happens every Sept) - working even though I felt v unwell.
- Making an effort to go to a zumba class a few times when I couldn't make yoga.
- Learnt about pacing. Implementing it.
- Several drs appts. Lots of tests.
- Vit D deficiency diagnosed.
May 2017
- Holiday to Spain. Lay down all day in the sun - exhausted from the journey there. Started to feel more energetic on the 5th day - flew home and felt exhausted for 3 days.
- Diagnosed with CFS in a v dismissive way by a GP - I wasn't clear what was happening. He wrote me a 3 week sick note when I asked for something to show for disability benefits. Generally a nasty dr for other reasons and I cried a lot and made a complaint.
June-July 2017
- Working 2 days a week in order to get the festival to happen - 12-6pm. High stress, high stakes. Being a leader. Spending every last scrap of energy on work.
- Attempting to analyse my Daylio data to find trends. Can't find any trends to prevent me from being ill full stop. Can see that my happiest days are when I'm working, then the following 2 days I have to rest a lot, and on the 3rd day I feel good again. Working on Tues and Thurs and sometimes Fri; feeling most healthy on Mondays and some Sundays.
- Bullying from a housemate because of my health.
- Asked for GP referral to CFS clinic.
- Gave up on yoga classes when I had a day where I stopped being able to walk on my journey there, after a work day of intense concentration. Got put into a wheelchair until I got my energy back.
- Added echinacea and cod liver oil to my daily iron and vit D pills.
- Lots of grief about my health. A lot of crying.
Aug 2017
- Citizens Advice appt about disability benefits. Didn't represent myself very well because it was new to me, and the advisor said I'm only on the cusp of being eligible for support. The advisor said the sick note counted for nothing and I had to wait for a specialist appt to get more info from a dr written down. I was pretty upset. On the same day my friends threw a birthday party for me. Then I was in bed for 2 weeks from PEM. Missed therapy for the first time ever.
- Started keeping diary for disability benefits.
- Still grieving. Occasional day of fragile mental health.
Sept 2017
- Festival happening. Trying to prioritise and chill out as much as possible, and leave it to my team, and let go of perfectionism. Working 2-3 days per week, in bed for the rest.
- Chasing CFS clinic for an appointment.
Nov-Dec 2017
- Crash. Unable to do even an hour of work over the course of a week. Missing meetings repeatedly.
- B12 spray - unsure if it's working
- Meetup with CFS/ME central London group in Oxford Circus. Met a couple of helpful people.
- Put together info for disability benefits to show CFS clinic nurse, with help from a friend. Massively stressful.
- Diagnosis from CFS clinic in St Heliers Epsom Sutton.
- Reading 'How To Live Well with Chronic Pain and Fatigue' by Toni Bernhart - helped a lot.
- Coming round to acceptance of being ill.
- Gave up work.
- GP practice chucked me out of the system because of an admin error. Had to re-register at another practice.
- Several dr appts with different drs at the new practice - trying to find one that suits. Nobody knows anything about CFS. One was actively dismissive of it.
Mid-Dec 2017
- started doing a daily rest
- Yoga for 10 mins in morn and eve
- Tracking activity/rest/sleep with the worksheet the clinic gave me
- Trying Phenergan for getting my sleeping pattern in order
- Steroid inhaler for asthma to stop nightly coughing
- Magnesium which helps with brain fog for sure.
- Came off iron tablets - no longer deficient.
- Went on tranexamic acid for heavy periods.
Jan 2018
- Trying to not-try: as soon as I lose concentration, rest instead of pressing on.
- Pill box organiser
- B12 pills - might be working
- Reading 'How to Deal with Adversity' by Christopher Hamilton.
- Made a google form to track my health better.
- Gave up on Phenergan - makes me horribly sleepy for 36 hours.
- Doing well with establishing my yoga and rest routine. Not working any more is helping me focus my energies on doing things like this.
- Planning to pick friends up on their offers for cooking me food. A friend is helping me by co-ordinating my other friends.
This is as I remember it - haven't checked the dates, but it's about right.
I feel like my progress in doing things that will make me feel better is speeding up, now that I'm deprioritising work completely.
- Treated it as flu. Stayed in bed, ate soup and oranges, went to local cafe when I could (perhaps every 2-3 days).
- By Nov, attempting to go to the odd work meeting.
- Psychotherapy - since 2015, ongoing, weekly.
- Using the Daylio app to track my happiness and health to try and find out why I get ill so much - I have always got ill with flu, or tonsillitis, or laryngitis, more often than the average person.
Dec 2016
- Diagnosed with iron deficiency as the answer to my fatigue. Went on iron pills. They helped a little.
Jan 2017
- Went back to work part time for 3 weeks - sleeping/exhausted in the evenings and all the days I wasn't working. I didn't feel significantly better by the time I decided that I would work, but I thought that the iron tablets would make me completely better while I was back at work. Unfortunately I crashed badly.
Feb-April 2017
- Same as Sept 2016.
- Kept trying to work remotely - exhausted me. Had a fall out with my bosses because they didn't understand why I wasn't more on top of things, even though I'd explained I was ill.
- Started to try and work on my own business (a design festival that happens every Sept) - working even though I felt v unwell.
- Making an effort to go to a zumba class a few times when I couldn't make yoga.
- Learnt about pacing. Implementing it.
- Several drs appts. Lots of tests.
- Vit D deficiency diagnosed.
May 2017
- Holiday to Spain. Lay down all day in the sun - exhausted from the journey there. Started to feel more energetic on the 5th day - flew home and felt exhausted for 3 days.
- Diagnosed with CFS in a v dismissive way by a GP - I wasn't clear what was happening. He wrote me a 3 week sick note when I asked for something to show for disability benefits. Generally a nasty dr for other reasons and I cried a lot and made a complaint.
June-July 2017
- Working 2 days a week in order to get the festival to happen - 12-6pm. High stress, high stakes. Being a leader. Spending every last scrap of energy on work.
- Attempting to analyse my Daylio data to find trends. Can't find any trends to prevent me from being ill full stop. Can see that my happiest days are when I'm working, then the following 2 days I have to rest a lot, and on the 3rd day I feel good again. Working on Tues and Thurs and sometimes Fri; feeling most healthy on Mondays and some Sundays.
- Bullying from a housemate because of my health.
- Asked for GP referral to CFS clinic.
- Gave up on yoga classes when I had a day where I stopped being able to walk on my journey there, after a work day of intense concentration. Got put into a wheelchair until I got my energy back.
- Added echinacea and cod liver oil to my daily iron and vit D pills.
- Lots of grief about my health. A lot of crying.
Aug 2017
- Citizens Advice appt about disability benefits. Didn't represent myself very well because it was new to me, and the advisor said I'm only on the cusp of being eligible for support. The advisor said the sick note counted for nothing and I had to wait for a specialist appt to get more info from a dr written down. I was pretty upset. On the same day my friends threw a birthday party for me. Then I was in bed for 2 weeks from PEM. Missed therapy for the first time ever.
- Started keeping diary for disability benefits.
- Still grieving. Occasional day of fragile mental health.
Sept 2017
- Festival happening. Trying to prioritise and chill out as much as possible, and leave it to my team, and let go of perfectionism. Working 2-3 days per week, in bed for the rest.
- Chasing CFS clinic for an appointment.
Nov-Dec 2017
- Crash. Unable to do even an hour of work over the course of a week. Missing meetings repeatedly.
- B12 spray - unsure if it's working
- Meetup with CFS/ME central London group in Oxford Circus. Met a couple of helpful people.
- Put together info for disability benefits to show CFS clinic nurse, with help from a friend. Massively stressful.
- Diagnosis from CFS clinic in St Heliers Epsom Sutton.
- Reading 'How To Live Well with Chronic Pain and Fatigue' by Toni Bernhart - helped a lot.
- Coming round to acceptance of being ill.
- Gave up work.
- GP practice chucked me out of the system because of an admin error. Had to re-register at another practice.
- Several dr appts with different drs at the new practice - trying to find one that suits. Nobody knows anything about CFS. One was actively dismissive of it.
Mid-Dec 2017
- started doing a daily rest
- Yoga for 10 mins in morn and eve
- Tracking activity/rest/sleep with the worksheet the clinic gave me
- Trying Phenergan for getting my sleeping pattern in order
- Steroid inhaler for asthma to stop nightly coughing
- Magnesium which helps with brain fog for sure.
- Came off iron tablets - no longer deficient.
- Went on tranexamic acid for heavy periods.
Jan 2018
- Trying to not-try: as soon as I lose concentration, rest instead of pressing on.
- Pill box organiser
- B12 pills - might be working
- Reading 'How to Deal with Adversity' by Christopher Hamilton.
- Made a google form to track my health better.
- Gave up on Phenergan - makes me horribly sleepy for 36 hours.
- Doing well with establishing my yoga and rest routine. Not working any more is helping me focus my energies on doing things like this.
- Planning to pick friends up on their offers for cooking me food. A friend is helping me by co-ordinating my other friends.
This is as I remember it - haven't checked the dates, but it's about right.
I feel like my progress in doing things that will make me feel better is speeding up, now that I'm deprioritising work completely.
