(Catchy title, I know…)
When I first went to the doctor’s about the ongoing, never-ending, soul-sucking exhaustion, I was told that everyone feels like this sometimes (and besides, you’re home educating 3 children so of course you’re tired). As any of you who have this will know, there’s a WHOLE lot of difference between being exhausted, and having ME. Sometimes when my husband asks how I am, I’ll say “I’m just tired, not ill-tired” – there’s a difference.
Having been generally fobbed off by every doctor I went to, I started consulting Dr Google and decided that all the symptoms probably suggested I had CFS/ME. I then went to yet another doctor I hadn’t seen before and asked if that could be a possibility. She looked at the blood tests I’d had and agreed that yes, possibly it was that, handed me a print-off from patient.co.uk and told me to come back if it got worse. Well…it had taken me all week to save up the oompf to get there in the first place, and I had to lie down in the waiting room, totter into her room and lie down while she did her thing – how much worse did it need to get to warrant a return visit?
But armed with a potential diagnosis, I started reading and researching. A family member had recovered from CFS in the past and suggested I try the Optimum Health Clinic in London. I lived in West Wales at the time and couldn’t go downstairs without needing a nap so London may as well have been the far side of Saturn. They run a phone service though so I had an intro chat with them and booked into both the psychological and the nutrition services.
They’re not cheap by any stretch but that was the start of something for me. For the first time, I understood that the psychological side doesn’t mean you’re going bonkers, or that you’re weak-minded. In order to recover, or at the very least, regain a bit of energy, you need to calm your nervous system down. I could only manage three phone sessions and then I couldn’t fund it any more but they started me along the road and for that I’m grateful.
Since then, I have factored the following into my life:
- Naps – these are non-negotiable, even if I’m not tired I have a rest at 1pm.
- Meditation – this is good for calming the nervous system.
- Pacing – argh, horrible thing but annoyingly necessary.
- Intermittent Fasting – only a very weak 16:8 but that’s all my body can manage.
- Gluten-free – this is intermittent too but only because I love bread, I feel much better off gluten.
- Sleep hygiene – this is HUGE, tidying up my sleep routine made a massive difference to the quality of sleep I get each night.
- Cutting back on processed sugar
- Red Light Therapy
- Acceptance – this is not weakly submitting, but admitting that the illness is currently stronger than I am.
I have also tried Acupunture and Bowen Technique but I’m never well enough to go regularly so they only lasted 2 weeks and 4 weeks respectively before I stopped. Also expensive.
Over the next few blog posts I’m going to potter through each of these in more detail and possibly add more that I’ve forgotten about.
Also I’m sorry for the shoddy work on the blog, I will learn how to wrap text and make it look prettier – just not this week.
9 thoughts on “Things I’ve done so far”
Hello Rosie! I have joined you from the OHC recovery group facebook page. I enjoyed reading your two posts so far, you have a nice readable style. Looking forward to getting to know more about you and your recovery. I got my diagnosis in July 2016. Lynda x
I’m glad you’ve enjoyed it so far – I’m so lazy, no proof-reading going on at all! Sending you energy vibes for today! x
Hi Rosie, I too like the way you write and hope to follow your blog as you’re able to do it. I’m not very good at finding blogs again once I’ve left them though! 😬 I’ve often thought of doing it too but I think I’d need to dictate it as I don’t function too well when writing whereas I could talk the hind legs off a donkey! I like your title too and your reasoning behind it, very poignant. God bless you as you share your journey xx
I’m the same, once I’ve wandered off I can never remember the title! I talk like it’s an Olympic sport but writing is definitely a different matter, I agree. May God bless you with a full recovery in his time.
What a good start. I’m enjoying your writing style and looking forward to your next installment 😊
Could you explain a bit more about sleep hygiene? I’d like to learn more.
I’m reading a book about sleep at the moment, maybe I’ll do another post once I’ve finished! A lot of the recovery strategies for this are good for everyone.
Also if you can find your way around the layout, I did do a post on sleep somewhere!