The one with all the updates...
The last few days have been a little low, a culmination of things at home and some difficult health days. Some days I have to catch myself on and remind myself that I have a chronic condition and it isn't always going to be plain sailing. I've spent a lot of time since my diagnosis working on how not to let IIH affect my daily life that its only recently that I've let myself accept that there's two sides to that particular coin.
I can continue with the things I love, live and improve but I can also make allowances for myself and factor in this very real condition that is a part of me regardless of if I'd like it to be or not.
Through IIH UK I have been taking part in the HOPE programme for people with IIH, and ill openly admit that I was incredibly sceptical at first about how it would help and what I would gain but from the offset of diagnosis I have felt quite isolated with IIH, never really understanding much about the why and how best to manage, feeling left to my own devices by medical professionals and like my wider family and friends didn't really understand what my new normal could look like.
The HOPE Programme is described by IIH UK as "health and wellbeing intervention specifically designed for adults with Idiopathic Intracranial Hypertension. The course is based on positive psychology, mindfulness and cognitive behavioural therapy"
I am on Week 5 of the course so far and am honestly finding it so refreshing and interesting, not only am I learning a little more about the condition that I was given so little information about but I am getting to connect with others and share ways that we manage and improve our lives. I have felt validated that my fears and concerns are not just my own, and those silly nagging doubts no longer feel that silly. Ultimately I feel less alone, which in itself was worth it but the tools it has provided me with alongside others I had already begun working on will be useful going forward as we all know that there will be ebbs and flows as with anything in life.
These are all things that I am interested in and have been working on already personally and with my wonderful Personal Trainer Paul Newey - @JustYouPTMH , I really value Paul's style of training, working to strengthen both my physical and mental strength is the best thing I could have done and the benefits have been immeasurable.
Working with Paul has been really life changing for me, its now coming up to 8 months on working with him , mere months on from my diagnosis and feeling utterly lost I had followed him for a while and was intrigued by his differing style. I had become used to seeing Personal training as purely fitness based, as something people did to punish themselves to be honest! and to be endured to get to the result you wanted rather than to maintain as part of a balanced lifestyle. I had a tentative conversation and well the rest as they say is history, my progress is not going to be fast or showy, but that isnt something I ever strived for.
I've learnt to accept the frustrations more, to celebrate and relish in the little wins and to realise just how hard I was being on myself. My comparison to others who were in a completely different situation to me was hindering my own progress by sending me into a complete spiral of shame and "why bother" and that's the great thing about working with Paul and why that even though Ive had the 2 weeks from hell health wise I still show up where I can, this weekend we met up ( Paul, Katie, Matt, Chris, Chloe, Lucy, Chris and myself) and walked Castleton and Mam Tor ending the morning on just over 21,000 steps and I think a lot of that is because Paul makes you believe that you can, and he makes you want too.
I walked behind for a little while listening to a conversation between Paul and my partner Chris, relating to the stuff that Paul advocates and the way it helps people. I recall Paul saying he " wasn't that important" and Chris saying "I find people who are actually important don't tend to think they are" - it made me smile because it's absolutely true in many ways. Chris doesn't tend to go in for the serious and sentimental very often but has told me on more than one occasion that he both admires and appreciates Pauls work and the benefit it has had for me, so this was a really lovely moment to be present for.
In terms of mental health, I am still journalling and writing a lot, it is coming up to Dad's birthday soon and then Mums birthday and the tenth anniversary of her death. I always find poignant dates tough and with things at home abit rough at the minute with turbulent teenagers I find that I am longing for the parental input I used to have, although I can tell you absolutely that in my mother's eyes my son could do no wrong and, in my fathers, it would be payback for my own teenage years. But still, it'd be nice to roll my eyes and complain at someone other than my dog and my long-suffering sister.
I'm working towards my level 3 counselling qualification, something I've kept a little hush hush in my circles as I'm finding it really tough going alongside everything else. It's fascinating and will be so worthwhile but the juggling of things and returning to a set routine of sitting at my laptop and not getting distracted by things that other people need or want is proving really difficult for me, as is engaging my brain with the education process again. I'm working on it, that's about all I can give right now.
I've left the bereavement therapy group I had been going too, I felt that my time there had run its course. The group was mostly people who had lost spouses and I was beginning to feel on the outside, I have however expressed my interest in returning in the near future as a volunteer - it was a light in a very dark time for me and I'd love to be part of providing that for someone else.
I guess the last few weeks have been learning to ride the chronic condition train, not going so fast that I come careering off the tracks or so slow that I come to a grinding halt and start to roll backwards. but moving at a manageable speed, Consistency is the new buzzword.
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