During my first appointment at the North Bristol ME/CFS clinic (based at Southmead Hospital) my OT explained that the way the clinic works was that once my diagnosis was confirmed which occurred during that appointment (Link), I would be invited to attend their CFS/ME Foundation Course. Following the completion of the course I would then have a second one to one with her.
The foundation course consisted of two 1.5 hour long seminars which covered very basically an array of management strategies:
- Seminar One covered: Activity management, CBT, GET (Link)
- Seminar Two- Pt 1- Rest and Relaxation (Link)
- Seminar Two- Pt-2- Sleep and Stress Management (Link)
Once I had attended these seminars and digested their content, I would then attend a follow up with her, which would be lead by me, I could get specific support on what I felt I needed the most.
Before the appointment
I had a good hard think about what it was that I wanted the most help for. As I really think you will get the best out of it, if you come up with a couple of key things you want to work on.
With things like relaxation, activity, sleep and stress management; I know the things I need to be doing. Whilst admittedly I don’t at the moment stick to them completely I feel I have the tools to at least begin.
So the two areas I wanted the most help on was advice on my phased return to work and starting to increase my fitness/ physical activity (Covered in Pt 6- Link).
I am currently employed at a large accounting firm on a full time graduate trainee contract. However I haven’t worked FT since October last year, at the beginning of the year I went off on full time sick leave. Work have been nothing but supportive during this whole time, which I am aware is not the case for a lot of people.
In May I decided to started back on a phased return to work. This began on 3 hours on a Tuesday, starting at 11am working for an hour and a half, having a half hour break then working another hour and a half.
This then increase by the end of June to 6 hours a week over Tuesday and Friday.
I had July off for study leave to hopefully sit my final ever chartership exam (fingers crossed), but now that was over I wanted to focus on making both my health and work a priority.
So I really wanted advice on the best ways to support this.
Slow and steady wins the race
She started my explaining that she had helped many people get back to full time work; but the most important thing to bear in mind is that slow and steady really does win the race.
We viewed my my current position of 6 hours a week as a starting point. She advised that I should keep on this for a few weeks, and then look to increasing at a maximum of 10-15% at a time.
|Week||Day 1||Day 2||Day 3||Total p/w|
|1-3||Tues 3hr||Fri 3hr||n/a||6hr|
|4-6||Tues 3.5hr||Fri 3.5hr||n/a||7hr|
|7-10||Tues 3hr||Thurs 2hr||Fri 3hr||8hr|
|11-13||Tues 3hr||Thurs 3hr||Fri 3hr||9hr|
It is also worth having review dates rather than increase dates, this is a time for both you and your employer to review, discuss how you are getting on and if you are confident at increasing that level.
She explained that a good way to judge if an increase is right, is to ask yourself the question: Out of 10 what is the likelihood of being able to successfully and consistency of doing the increase.
If you think the likelihood of being able to do it is 7/10+ this means it is likely to be ok.
If 6/10 or below this means that you should consider, increasing by a smaller amount or implementing any other measures that would make you more confident. Later in this post I will discuss the other areas that can make work a bit more manageable.
So being the nerdy accountant that I am I used excel to populate how long it would take me to get up to full time hours of 35hr p/w, by increasing every 3 weeks.
The results really shocked me, as I found that increase every 3 weeks by:
10% I would reach FT hours in 1 year 2months (60 weeks)
15% I would reach FT hours in 9 1/2 months (42 weeks)
So really around a year if I’m lucky, building in holiday etc into it.
But truth be told I really don’t find having all my increases planned out particularly helpful. As if I feel unable to increase every time, I feel like I have failed, rather than looking at what I have achieved.
The only problem with that is that HR departments notoriously love dates so they can monitor progress etc. But equally I think that having dates is useful as well as it helps provide structure/goals.
Therefore the happy compromise which the OT suggested is to set review dates rather than increase dates. As it looks at it more holistically, you can not just look at increasing hours, but the types of work that you are doing and rest breaks etc.
Rest at work
Resting is one of the most important thing for people with CFS, so resting at work is a no brainer and is something that should be built into your working day.
A little illustration that I really liked was that was that rest should be like the punctuation in your day. It is both essential for your day to work, but also it can come in various shapes and sizes and so can rest.
|Comma||Do a 30sec mindfulness exercise at desk, put feel firmly on the floor and take 5-10 deep breaths|
|Full Stop||Get up from desk to get a drink|
|Semi Colon||5-10 Minute guided meditation using Buddify or MP3 (Link), in a quite private space.|
|New Paragraph||Lunch Break|
|New Chapter||Lie down/ 20 min power nap|
Initially I just thought all the work I did was all the same, I mean I sit at my desk and just do work, but then she made me be more specific and drilled down into some of the tasks that I had done. Which lead us to come up with the following different categories:
- Admin – Checking emails, time sheets
- Business Development – Researching companies online
Then we rated how challenging each task was but also how stressful I found them all.
Parting thoughts on phased return
I found discussing phased return with my OT really helpful as it gave me more practically things to talk through with my manager than just talking about hours.
I know that the majority of the stuff above is highly personalised to me and a lot of it is common sense, but I found it invaluable not only to show me that there is more to phased return than just the hours, but also that when having calls/meeting with HR and my Manager I could be more involved, as I could refer to what was discussed during my appointment.
In addition she made it very clear that she was happy for me to run any plans past her by email or phone after the appointment and to talk to work directly via email (cc’ing me in of course) if that would help.
The second part of the appointment was on how I can improve my physical fitness which can be read in Part 6 of My NHS experience with CFS (Link)