Every Little Step is a Big Step - Sue's story (part 4)
MY CURRENT DAY TO DAY LIFE
In the second year after becoming housebound, I found an excellent local hypnotherapist, who came to my home. He has remained with me weekly for 3 and half years now and he has taught me so very much. Working together, we have managed to walk to the end of my road, up the field at the back of my house and drive a few hundred yards up the road.
There is a pub four houses up from mine and every year they hold a music festival there. The past couple of years I have sat listening in my garden wishing I could be there. This year I was! I had been trying to walk to the pub for ages but walking the roadway proved hard for me. Then we thought walking to it along the edge of the field at the back of mine. Every week we practiced – sometimes good, sometimes not, and eventually we made it the few hundred yards along the field and reached the pub garden by climbing up through the ditch. I arrived wearing sticky weed and a big smile. I went to the gig twice and felt alive for the first time in a very long while.
I also had Sunday lunch there with my family – my first meal out in many years. Sadly, setback followed – it is very much one step forward, two back it seems. Shortly after I was weeding a neighbours garden and had a massive panic attack – I was alone and hid in his bushes as I could not get home. This was an enormous knock to my new found confidence and I reframed the pub in my mind as being out of bounds again as my neighbours was nearer. With agoraphobia you have like invisible boundaries and once you get to them and feel “safe” you feel you can move it to the next one. But if have a panic at any point so the circle closes again. I have since walked back to the pub but not gained the confidence to go back inside yet. Some days I do better than others – I am always worse when it is bright sunshine and blue skies – the world feels very big and open to me then – as it does when it’s dark. I recently bought a bike and would encourage other sufferers to do the same as this kick started me getting further up the field as my legs were so wobbly and kind of frozen when walking and the very action of cycling gives you a focus and uses the flooding adrenalin. Sadly, again after trying to bike a bit further I had an M.E. flare up and was laid up for a week and so am scared to push this now. Again a vicious circle.
My therapist is teaching me that it’s not the sky, or where I am, or any external stimuli that changes how I feel (as I had believed) but my THOUGHTS about it. He has helped me gain much insight into how I control my thoughts (I always believed they controlled me). Although I have made much progress in how I think, I am hoping that the new App will be another layer to aid my recovery. It is all about layering, as I call it, as I do not believe there is one thing that will “cure” you. You can “cure” yourself through building up these layers – therapy, meds maybe, meditation / visualisation, creative outlets, reading, natural supplements (fish oils for me), Camomile tea (no caffeine) talking, yoga...
I manage to keep busy at home and am lucky I am mostly comfortable in my garden (although this hasn't always been the case). I love gardening, am able to go to yoga in the hall next to mine which I love but is proving hard lately as my joints are so stiff and painful and the vertigo inhibits my movements. I enjoy crafts, word puzzles, reading and I have held fetes in my garden and the hall for the past 4 years and have raised over £5000 for charities through this. I am truly blessed have the most wonderful family and friends; my husband, son and mum and brothers have been amazing and never made me feel guilty or a lesser person and are so supportive – I am very lucky to have so much love around me. I have a few very close friends who have seen me through so much and never fail to make me laugh (I am very lucky to be blessed with a good sense of humour). My heart goes out to sufferers who are alone with such an isolating condition.
I have missed out on so very much with my son and husband, as they have with me. The day of my son’s leaving assembly at this Primary school a dear friend phoned me on her mobile phone so that I could hear him get his award – as I heard his name called out I felt completely overwhelmed with guilt and sadness. Another dear mum at the school kindly taped it for me, as she had with school plays etc. I grieved for all the lost times deeply at first, until I reached a sort of acceptance (but that felt sad). I still wave them off everywhere, at first it was with utter sadness and now not so.
Missing family holidays and days out, parties, weddings of family and friends, etc. have been frequent losses. I have also never seen my mum's home which she moved to several years ago and is only 2 miles away. As she is getting older, I dread anything happening to her as I could not visit her in hospital or a home and could not bear to be not be with her when she needs me. Dear people to me have passed away since becoming housebound I did not make it to visit them nor pay my respects at their funerals. As a person who wants to help others not being able to give this support when most needed is hard.
In some ways I worry how much I do accept my situation, that I have become too set in my life now and almost forgotten the outside world. I think you have to have some acceptance of any chronic condition though in order to get through it - but I want to not fear going out so it becomes appealing again, if that makes sense. It is the fear of the fear and this CAN be overcome. This is only the “bare bones” of my journey and there is so much more I could write. I hope one day to be writing a “happy ending”. Never say never… :-)
By the way, I have decided to take a selfie each time I make it out somewhere new.First was taken last October 25 on the field round the back of my house and the second up in the field, further away from my home. Both during my weekly session with my therapist.