Hi
@Wallaby,
Yes
@andyguitar is right, it does come under a mental health service.
But the approach is set as a one to one session with the psychologist, who walks you through a personalised plan on how the service user manages on a day to day basis, to understand their baseline, and see how they can help them to get well and have a better quality of life.
It's almost like psycho education, where you're taught how to fully understand CFS, what your symptoms and triggers are, coping mechanisms etc. You get CBT techniques to help you, manage your sleep, plan your time and resources to make sure that you don't hit the 'boom and bust' situation, and how to identify when you're heading in that direction and what works for you as an individual to manage everything. It was so good and the doctor that was helping me, would give me homework to do, to try out the different approaches to see what did and did not work for me. That helped us to work out exactly what CFS looked like for me, and what areas of life I could improve and the areas where I just had to accept that it was a part of my life. She taught me about pacing and how to make incremental changes, like walking for a minute or two, building it up slowly etc and how to push past my comfort zone in stages, without forcing myself into a relapse.
I did this in 2017 I think and the sessions were every 2 weeks for a year and it was partly like a therapy session as we would look at my week, how everything was affecting me mentally as well as physically. She'd teach me a new technique and we would discuss it and then I'd trial it and we'd review it. And if I needed to keep trialing something or just wanted to talk, we could do that as well. She helped me to establish boundaries and when to say no to preserve my energy and keep sane (I have an incredibly demanding large family), whilst still pushing towards becoming better. Once the year was done, I had a year of reviews, where I went once every 3 months to see how I was managing and what measurements I had put in place for my own circumstances and how I managed to adapt to life's changes and was able to self-regulate my actions and how I was managing with my CFS in general.
The doctor that I had was so good, that she recognised that sometimes I just completely forgot what I was doing, I wasn't sleeping despite being exhausted, taking onto too many commitments when I thought I was well etc. and then crashing and not having the motivation or energy to follow through. She told me that she thinks that I have a mood disorder, and I was referred to a psychiatrist for a second opinion and he and another psychiatrist confirmed that I have bipolar. Since we had that confirmed, she changed her whole process to help me, as sometimes I'm physically well, but my mind is depressed and I can't face anything. Or I can barely walk or I am supposed to be bed bound as I'm really struggling, but I'm in hypomania and I go and do lots of activity or don't sleep properly for days as my mind is racing, then the crash afterwards is horrendous. But as she was able to help me so much, even a few days later, I'm still able to identify what works for me at different times, as my mental and physical state are very rarely on the same page, and so one inevitably makes the other worse.
As towards the end of my review year (January 2019), I still struggled sometimes although I'd started working full time, we spent those last 2 sessions giving me coping mechanisms and approaches to handle my workload and working after 2 years being unemployed due to ill health. She wrote me a letter that I used during a work occupational health review, and it helped to put a support plan in place for me. My GP also referred me to the Pain Management Clinic at St. Thomas's Hospital (
https://www.guysandstthomas.nhs.uk/our-services/pain/input/patients/programmes.aspx) and that really helped and from there I had a free course of one to one hydrotherapy to help me manage the pain, as I'm in pain constantly.
I think your daughter would gain a lot, as the sessions pay attention to the mental toll of a chronic illness without it necessarily being a therapy session. But as the session are led by the service user's experiences, a part of the 50 minute sessions allows for this, and the remainder is spent looking at management techniques.
Hope that helps, and sorry this was so much to read lol. But if you have any questions that isn't answered above, just let me know.
Take Care,
Keedie
x
