Last week was a bit like a sandwich, two slices of life with a nice filling in the middle. The reduced capacity to work forms I’ve been filling in for the government body Atos had to be completed and that meant appointments with doctors, therapists, and citizens advice in order to make that happen. It also meant a whole lot of stress as I fight to justify my illness once again.
It’s an odd world where an independent non-medical body makes decisions about whether we can work or not, regardless of our medical professionals opinions. It’s even odder to ask a patient to analise their own cognitions and thoughts in order to ascertain where they are in their illness.That’s how it is though and later today when I push an envelope into a post box it will be with some relief. I can’t alter the outcome of this process but I’ve done all I can to put my case. As you can imagine, this has caused considerable distress.
Having to open up to strangers and try to explain in detail how my own illness affects my life has left me feeling vulnerable, fragile, and under attack. All those old fears: lack of trust, not being believed, and being unsupported, have re-emerged. They are actually historical sensations that live in my psyche, not fact, left behind from moments of despair and trauma. They have all re-surfaced now and my emotions feel free-flowing and uncontrolled.
Fears around losing control of my own life at a point where I’m tenderly nurturing myself back to health are strong. At times I feel helpless in the face of the machine, even though I don’t know the outcome of this process. Perhaps it’s because as a child I felt powerless to change things and be heard. I had to nurture my own emotional development and the way I learned to do that was to take charge and make decisions. At least that way I could feel that I had made a choice of some kind, and in that I had a little more power over outcomes.
My mind feels as though it is beginning to collapse once more. Negativity surrounds my daily life and all the good things I have achieved are buried somewhere deep in my memory. These feelings and sensations are part of a long depressive episode, something I was fighting prior to, and even during, my trip to France. There’s an uncaring numbness. A distance and separation from the world, those I love and who love me. I want to leave, to run, to hide. I don’t want to fight. There’s no fight left. All I’ve done is fight, but the government machine doesn’t care that so much has been stolen from my life already.
Sleep is disturbed by hideous nightmares and waking gives around thirty seconds of peaceful relief before the anxiety of what lies ahead tumbles into my mind like a waterfall of bad thought. I’m angry, or at least the child in me is. “Look at what I’ve done, not at what I haven’t,” it screams pointlessly, and it’s right, isn’t it?.
I have said this before but if people in my position were more supported we may well become healthy again much quicker than we do. Successive governments have not invested in mental health since the days the institutions were closed and we were all left to our own devices, to suffer in silence. Out of sight is out of mind.
People might be better off reading this blog rather than the forms I’ve carefully filled in. It says more about my mental health over time than any formulaic statement could ever do. In my own mind, at this moment, the battle is already lost. By thinking so negatively I preseve the part of me that can’t face another big disappointment from those who have more power over my life than I’m currently able to hold. The child needs a hand to hold, a little reassurance from those with power.
These fears are historically based and rock me to my core even now in my fifth decade. Abandonment, loneliness, not being heard, not being helped, not being believed. What other conclusion can you draw, other than the fact that it’s you, your own fault, your own problem, not the system that’s kindly helped by providing enough to live on the breadline this last eight years whilst I’ve used every skill I know to survive and move forwards.
In the light of all this I completed my forms last Tuesday and made the decision to go off for two nights on my cycle. Cycling and camping are worlds I understand. I feel right when doing them, level and balanced. Historically there are no barriers or bad memories, so it isn’t surprising that I seek solace and repairation in thsoe things. In cycling, I’m convinced that there’s something in the bi-lateral movement of limbs in combination with our dual hemispheric minds that is much greater than just exercise. I have no evidence to support this idea but I’ve discussed it with my therapist and doctor who think it’s a strong possibility.
I had to return Michele’s bike and a few belongings to Barnstaple at some juncture and that got me thinking that if I did that on Tuesday evening, after the form filling saga with Citizens Advice, I could cycle off to explore Exmoor on Wednesday, returning on friday night in time for Piltons ‘Green Man’ festival on Saturday. Michele helps organise and run this festival and for the last two years I’ve been away si have missed out on it.
Armed with two panniers and my teepee I set sail for distant lands. I actually pedalled off up the road but I’ve always wanted to say that. My mind was on the strata, not the website Strava where people pit themsleves against their own/others times on set routes and segments of routes. No, strata was on my mind because to reach the north coast you are running against the grain of the local geology.
Early morning tiredness was soon forced out of my legs as they realised it was another days riding. The sooner they begin working properly the quicker its over and I think they are beginning to know that fact. Hills hurt. Anyone who says otherwise is lying. Some riders are better than others, usually the painfully thin and light people with excellent power to weight ratios, but the rest of us wrestle our minds and muscles in order to reach the top of them.
The joy is in the effort made in order to enjoy view they afford at the top, or halfway up if you need an excuse to stop. Most of my day would be spent climbing ever bigger hills and the scenery would grow in direct proportion to their size. Don’t come to Exmoor for a relaxing weekends cycling. Come to Exmoor because, like me, you love the scenery, the hard work, and big hills that seem to make it even better. Arriving at the top leaves me feeling as though I’m are on top of the world looking down on creation, a position from which you can’t often see the blemishes.
My route avoided the main roads, prefering tiny lanes, meaning that I probably climbed far more steep ascents than had I gone the short way. I didn’t care, it was just what the doctor ordered as I quickly forgot my worries and got on with the job in hand. Up the hill and along the valley. Up the next hill and down the valley.there were no surprises today, you could see each and every hummock. Down into Paracombe and up again, aided by my map being wrong. Down into Woody Bay and up again. Through the Valley of the Rocks and into Lynton before plummeting downwards to Lynmouth where I nearly, but didn’t, stop for chips.
Thois particular section of coast was awe inspriingly beautiful. Glimpsed through dense tree cover the sea glowed, duck egg blue in colour. Huge cliffs warned of the dangers of this craggy shore should your vessel get into trouble, but the warmth made it all feel friendly. The only motorist I saw stopped and asked, in a german accent, whether I was Chris Froome climbing all these hills. I laughed and said that couldn’t be further from the truth.
Up the long and gradual climb past Waters Meet where I also nearly stopped again. If you’ve ever had a cream tea at the National trust house there you will know why, and if you haven’t do go and find out. You can walk from Lynmouth along the river or park nearby and wander down over the bridges to find an idyllic house in the woods. From the junction with the Simonsbath road I toiled up another country lane and began to feel that this was enough for one day. I was lucky because it was and after a few miles along the most delightful valley I Rolled into Cloud Farm Campsite via a long and dusty track.
Cloud Farm is a beautiful, unspoilt, and peaceful campsite but I feel the need to have a small moan. If you advertise that you have a shop so that people don’t need to go elsewhere needlessly to shop, which they do, it had better be open and not shut down with no signs of life. I could have shopped in Lynton and it crossed my mind to do so but the website was so clear on this that I didn’t. Fortunately they do excellent breakfast and evening meals that are reasonably priced as well as having a cafe that does a few basics like milk, bread, ice-cream, and cider.
Armed with three of these, and having stashed a few items in my panniers prior to leaving home, I set off and pitched by the river bank amongst musicians, artists, and families. It was blissful. No phone signal (but free Wi-Fi) meant no disturbances and I could get on with equilibriating and sunbathing.
The river was so warm that it effectively warmed my cold cans of cider up. Not as much as the intense heat would have though. There was a fridge in the utility area and the basic facilities were clean and well kept. Campfires are allowed and encouraged. They provide a great way to keep the pesky midges at bay although I;m not sure you need to buy logs to burn given the propensity of trees and dead timber lying around. The next thirty six hours were gentle and peaceful allowing me to feel settled and happy again. I could write reams about the yellow wagtails, swifts, brown trout, crows, and buzzards, but this is a blog and not a book so I won’t.
I seemed to have at least one conversation with almost everybody on the site and took a gentle stroll and several cooling dips in the river. I shared cider with an artist and conversation with a biker who had escaped family life for two days. I ate food provided, rather than cooked, and brewed tea almost endlessly. I baked in the sun and cooled in the shade of twisted oak trees whilst writing in the leather journal that my lovely daughter Lydia had given me to accompany my travels. Like I said earlier on it was just what the doctor would have ordered had I asked her opinion. In short I felt safe again and had enough distance between me and authority to be smiling.
I packed lazily the following morning. I didn’t want to leave but was excited about riding over to Simonsbath and then over the next part of the moor to pick up the National Cycle Network (NCN3) that would lead me back to Barnstaple.
It was another hot day, but an easterly wind was cooling it a little. Even the ascent of the long (25%) hill after the earlier short (20%) hill wasn’t off-putting. They were climbed with relative ease after my whole day of chilling out. Joining the Simonsbath road I found it sloping steadily upwards for the next few miles at an angle that made me feel like I was quite good at climbing. A steady rhythm saw me enjoying the effort it demanded before I slid quietly into this tiny hamlet around midday.
Sat on the bridge over the river I had no real desire to leave. The dappled light from the sun warmed me and the moor rose all around. The climb out was engrossing, so much so that on reaching the top I never gave a thought to directions and shot some two miles down the other side before realising I should have turned off. Laughing at the fact that I now had to ride back up I turned about and set off, a little more mindful of where I should be going.
The rest of the day was a gentle cruise, interupted by the occasional steep hill. The views towards the coast and Dartmoor are astounding, giving you that top of the world feeling. On reaching the Boston Tea Party, my favourite cafe in Barnstaple, I sat and waited for a few minutes before Michele, who had just finished working, rolled gently into view aboard the Brompton that I had restored for her. Coffee and cake was definately on the cards and I felt totally relaxed.
The following two days went by in a blur of helping out at the Green Man festival in Pilton, relaxing in the sun, and becoming increasingly distressed about the Ebay sales I had instigated a week earlier. Although my auction was successful, I didn’t feel anything but numbness at having to sort out buyers needs, postage, and packing. By Sunday afeternoon I felt barely able to cope with the need to finish what I had started. Ebay suddenly took on the perspective of some huge thing I couldn’t face or manage, rather than the reality of a few parcels to post. It took everything I had left in the tank, and a little help from good friends, to cope with sending five parcels!
My gentle bubble had burst the previous afternoon and I found myself withdrawing from all around me. The reason wasn’t just the re-engagement with society during the hustle and bustle of a festival. During the afternoon there had been a choir of school children singing in the park. As I listened my emotions burst their banks and I had to bury my head in Michele’s shoulder as I became overwhelmed with tears, sadness, and grief. It felt as though somebody was tearing my skin off.
I don’t understand these sudden episodes as I was previously relaxed and happy, enjoying the festival. Something in the singing triggered deep unhappiness and once the emotions ceased to flow my mind shut everything down again throwing me into a deep depressive episode that was to last two days. I became numb and unfeeling, closed and dark. Anger whelled up inside and I felt a strong desire to run away. All felt lost and life made no sense. In that moment dark clouds gathered in my mind seeping in like a thick fog and infiltrating every pore of my mind and body leaving me feeling poisoned.
Lost in this fog life became unimportant to the point where despair raised its ugly head. What’s the point in anything? There is no fight. I can’t face any more of this and it will never get better. I don’t want to live like this anymore. These are few of the negative thoughts that my bounced around loudly in my head creating the feeling that my skull would explode at any moment. All I could do was wait for the adult to return, the balancing force that gives these negative sensations some perspective. I knew it would, but I didn’t know when. Whilst waiting I packed the parcels and booked couriers to whisk them away to their new owners.
Agitation prevented sleep and I scratched at myself as if I had an invisible skin complaint before finally falling into slumber after taking a shower at 1.30am. Monday is therapy day and I struggled to find the energy, concentration, or will power, to drive to Budleigh Salterton. “Perhaps I need to call the doctor. I’m not sure I can deal with this on my own”. These were just two of my thoughts as I struggled with the loud and constant noise in my mind. I dug deep, making myself go through the process of attending therapy as I have on so many other occasions. I drove slowly, hypnotised by the noise and speed of the traffic. The despair began to breakdown, proabably because in my subconcious I knew help was to hand. Talking this all through with my therapist helped and by the time my session ended I felt a little more balanced. I walked into the town posting the forms and supporting documents off to Atos. Ridding myself of this lifted some of the pressure from my shoulders. Whatever happens next is beyond my control and I would have to wait for an outcome.
I made the decision that at bedtime I would take a dose of Tamazapam in order to sleep better. I rarely use this drug but the last few days had stretched me to my limits and I sensed the need for a deep, long sleep. By the time I drove home I felt agitated and exhausted. Nothing would stave my craving for peace and talking it all through had helped but stirred things around a little creating chatter in my mind. At bedtime I swallowed the drugs I useually take along with a tab of Tamazapam. Next thing I knew it was 11am on Tuesday. I had slept for twelve hours. I woke feeling a little woozy but otherwise bright and cheerful. My mind had found the respite it needed in the deep, drugged sleep, and I felt ready to face the world one more.
Tomorrow I will ride my bike and continue to try to re-establish the routines I know so well. I’ll begin to write the next chapter of my story in parallel to another project I want to take on. The process described will continue to roll around in cycles and I will continue to roll around on my cycle. Between cycling and writing, resting and dreaming, progress will continue. Just as long as those with power recognise the impact of their actions on the thousands of people like me who are struggling to deal with Atos and mental distress.