This week has been such a rollercoaster in the life of an endo warrior that I have to share some of it with you, Diva Readers.
Seeing yourself in the mirror of life-long friends is always a grounding experience. This week I had a great day out with one of my oldest buddies Jo. We went to the X Factor for Freya, so had a girly London day out stalking Gary Barlow and catching up over coffees. Brilliant.
The background info however, is slightly less glamorous; I had a terrible night’s sleep prior to our trip to town, as my pain was so bad. Little sleep means more pain as I need total rest to have a body that functions without being tense and exhausted, so I knew I was heading up for a week of being slightly broken.
By 3pm on Tuesday I was in tears in the loos at the O2, beaten by pain and exhaustion and needing to go home – Jo said she glanced over as we sat watching auditions, saw my face change and drain of all colour and knew we had to go.
This is no big deal, this is all totally normal in my life, but the difference is that as a chronic health warrior friends only see you usually for the slices of the day that you are able to function – for that coffee/drink/run, you look fine and normal. But, spend a whole day with someone struggling and you get to see how quickly energy fades, how bad thepain can get and how different the other side of the coin can be.
Jo has known me for 25 years, so I haven’t always been exhausted and sore, and it’s that truth in the reality mirror of a best mate that can make me sad sometimes. When I feel like that I need to remember that I am self employed and have so many opportunities because of my illness and not despite it. Re-framing, anyone? Thank you, NLP
The way that my life appears online can also be deceptive – I have a busy design and social media agency with some fabulous hair and beauty clients, I run workshops, write for all sorts of magazines about events and trends, so it can appear through my social media streams that I am out and about, busying myself with all sorts. This can be the case and I am not denying that I am privileged to do an awful lot of cool stuff through my work, but so often writing in PJ’s is the true reality.
This Thursday I went to the Endo Clinic at Addenbrookes. These guys have been amazing, since the team at Hinchingbrooke refused to accept my pain after pregnancy was endometriosis as “it can’t come back after pregnancy” – REALLY?! Even I know that is bullshit and I am not a consultant -I am now under the great care of a specialist team who have referred me to the chronic pain team to put some strategies in place. We are talking pelvic physio, nerve blocks, different meds, TENS machines, pain classes, all sorts. Brilliant.
They also acquiesced – and can I get a high five – that I am now an “appropriate case” for full hysterectomy, should I feel that the pain clinic shebang isn’t working. Hurrah! Bring on the butchery! Whilst I never in a million years would want to lose my womb and ovaries at 35 and have to rely on HRT for far too many years, the fact I now have it as an option means the world to me.
They have always said no, tried to get me to try all other avenues of Mirena coil, Zoladex and what not, which I have dutifully done and got the t-shirt of hormonal hell. So at last I have it in my toolkit. The final way out to try – which, I must add, still cannot guarantee a pain free life and is fraught with other issues, but it’s there, on the side just as an option. And that makes me feel listened to and safe.
So. Wednesday and Thursday this week was paying energy-wise for lack of sleep and day out on Tuesday, to the point where I had to come home from the endo clinic and spend most of my day and evening in bed, doped out on codeine. I had to cancel the book club meeting, the book club I founded to make sure I get out and have some form of social life, but ut turns out my friends are amazing and want to change it to next week so I can come. Ahhhh.
Feeling much more human by Friday (yay sleep and meds), I was super excited to speak to a friend of my buddy in Bude who is running chronic pain retreats in Widemouth Bay; speaking to Rachel, a former M.E and C.F.S warrior who is offering other “chronics” hope in the form of bespoke retreats with massage, yoga and NLP treatments just made me smile even more. Not only is the universe giving me a way out in the form of a hyst, I have the opportunity to do a pain retreat down in Cornwall and give my body a natural chance instead of the knife.
So, if you fancy a chronic pain weekend retreat with lovely food, yoga, massage, NLP and a bit of beauty and cocktails – let me know, we are plotting and planning and I am so excited!
And, as a lovely lady I had the pleasure of chatting via email to this week reminded me, I may be kicking back on the sofa in PJ’s on codeine, but I am doing it in style. I am exhausted and sore, but I have my inner badass and plan to stay wild.