I was talking to somebody this week about those awful nomograms that are used to see whether we are over weight, under weight, too tall, too short, keeping up our learning, and numerous other things. They are really just a graph of what is considered the upper and lower margins of what constitutes normal. Generally speaking we don’t like them. We all want to conform to some extent and being told we aren’t within the comfortable fold can be quite challenging.
I live in a world outside of nomograms. The margins I exist within are relatively narrow, and fluctuate like the tide. I still fit into the physical ones and have all the regular physical tests that tell us whether we are healthy or not, but there isn’t really a mental nomogram. The parameters for mental health are simple. Can you manage a normal life without being overwhelmed? If you can you’re fine!
Over the past six years I’ve had to learn to deal with mental health that’s way outside normal parameters, and I think its fair to say that I’ve made good progress. To the outside world it may appear that I live a life of leisure, free to cycle whenever I desire and to plan for things that most don’t have the opportunity to do. I don’t have to get up for work. The state takes care of my basic needs.
That isn’t my reality at all. These last few months have been a case in point that I would like to share with you.
As far as FB and Twitter is concerned I try to post positive aspects of my life. I hope that by doing that somebody somewhere will find a small spark that says “I can do this, I can take control of my life again.” It may just be a gentle walk or making a deal with yourself to ask for help when you need it. Whatever it is, being positive can help, but it isn’t a panacea for better mental health.
We all live within margins such as limited finances, not enough leisure time, pressure of work, family life, or limited ability. For most, these margins are wide enough for us to take part in society fully and to strive to gain a foothold from where we can grow and be independent. Imagine a world where your ability to do that is diminished, where you strive to work and your mind stops you dead in your tracks when you least expect it. Imagine you know clearly what your capabilities are, but that they fluctuate in a way that you don’t know from day-to-day what you are able to do. This is my world and that of many others.
Imagine also, a world where you are left feeling that those governing the country see you as a fake, as somebody who doesn’t want to take part, and therefore as an undeserving cause. Where those same people try to paint negative pictures in the media about all of us, who, for whatever reason, need state intervention. This is my world too. Mental health is just being given the same discriminatory rights as other disabilities. Can you believe that this is only just happening? Will it make a difference? We will have to wait and see.
Until then, people like myself have to live on a pittance, wondering what will become of us if something goes wrong with the house, cooker, etc. Don’t we deserve more than that? After all we have lost so much already. Our life expectancy is a heavily reduced one. Our abilities to hold down jobs, to create secure careers and relationships are compromised. Our ability to take charge and change our situation is limited, and our ability to take part in society is diminished. Does living the way we do help us to recover our lives? In a word no, it perpetuates our illness.
I’ve always tried to write about pertinent aspects of my own illness. My website wouldn’t serve any purpose unless I did. So, I’m going to try to explain a big change that’s happened in my life over the past few months that is the consequence of months of living with subtle changes.
Back in late November I told you that I had reduced the dosage of the medication I was taking by one-third. There was nothing scientific about this, it was the only step down available to me. I did it because I was struggling to sleep at night and wondered whether or not it was down to level of the drugs I was taking. From then until now I’ve had to assess if this was a good idea, by listening to my mind and talking to my doctor on a regular basis. Initially all was well. I had some withdrawal symptoms, but I was sleeping better and waking feeling less groggy than I had. Winter has added to the difficulty of trying to understand what’s happening in my mind.
As the weeks and months have gone by I’ve felt that my mind has edged closer and closer to crisis point. After a few weeks on the reduced drugs regime I suffered a strong depressive episode where I felt totally numb emotionally. It was as though I had stopped feeling anything at all, good or bad, a classic sign of depression. I became wary and tried to look after myself, resting as needed, trying to allow whatever lay beneath to surface. The following week I attended a therapy session where, out of the blue, all my emotions just boiled over. After a session like this I usually find my emotions return to something like normal by the following day and I’m then just tired, but this time they didn’t, I remained numb.
I could only feel agitation, emotional pain, and anger, something that seems to please my therapist as I’ve said before. I began to want to throw away or smash-up, everything I had, quite literally. All my belongings, laptop, phone, Facebook, house, people, everything. This was accompanied with a desire to run away, hide, and fade away. On occasion I would spontaneously burst into tears, and I reached a point where a quiet gentle TV drama would release a huge emotional response.
These feelings of helplessness and worthlessness have run throughout my life, and for all the work with my therapist and doctor they remain as strong as ever. They hadn’t been this prominent for some time, so I was all ears, listening to the warnings as best I could.
Part of this deterioration lay directly at the feet of the government. Having cut benefits and restricted increases to 1%, their policies have meant that I will be asked to pay 25% of my council tax, something I just don’t have the money to do. I felt attacked by this and my mind struggles to see a way to get through.
More recently I’ve started to suffer some symptoms from the past. I took the car to the doctor as I felt too tired to cycle. Returning home I went to bed falling straight to sleep. I’d woken in a frenzy of anxiety for whatever reason, and it took me half an hour to calm myself enough to think straight. As I fell asleep again, the phone rang loudly, except it didn’t. I almost jumped out of bed and then I realised that it hadn’t rung at all. As I lie there it rang three more times, except it didn’t, it was in my mind. I even checked when I got up and there had been no calls at all since the last known one.
On several evenings whilst I’ve been watching TV, I’ve seen small creatures scuttling across the floor in my peripheral vision. These were also false visions. These mild types of hallucination haven’t been around me for quite a long time and they are frightening. If reality isn’t what you see and hear, then what is it? To complete the picture I’d lain in bed last night slowly becoming convinced that the ghost of my dead cat was walking up my leg. I could feel its paws on my leg muscles and I felt frightened. I switched the light on and sat up. I was confused as there was nothing there. Once I settled I returned to normal sleep, managing around ten hours and waking feeling refreshed and just a little tired.
Since reducing the medication I have felt gradually less able to work, more distressed, less able to train for my next ride. I’ve had far less motivation than I had previously. Reading this it seems obvious that something was amiss, but the reality is that all these things are mixed in amongst other aspects of my life and time that are fine, appearing when they feel like it, which is mostly when I’m tired.
From day-to-day I have managed to work, completing my book (it does exist, I promise you), preparing for my next journey, and fundraising for Riding2Recovery. Despite this, there has been an over-riding feeling that I’m diminishing, that the illness is taking a hold once again and that I’m in decline. At times this has reached the point where I feel my life is done, and nothing is worthwhile.
For the last month or two my doctor and I have monitored all of this, and today we came to the conclusion that I needed to increase the dosage of my medication back to its original level. I’m quite circumspect about this. If the higher dosage helps, then the higher level it is. The last thing I want is to return to a full-blown crisis, and I will do whatever I need to avoid that as I have said many times. My therapist has always maintained that if I can manage on the lower level that this will help us to access the underlying traumas and deal with them. I realise that I can’t do that, so another course of action needs to be taken.
The complexity of illnesses like those that I, and many others, suffer make it difficult for anybody to help. Even within a specific illness, patients respond very differently to the same therapies and treatments. Much time, patience, and intelligence is needed when trying to help people to move forwards, especially when most illnesses are complex multi faceted interactions with partial diagnoses. What works one day doesn’t work the next. With experience you begin to have your own ideas about when things are just askew and when they are getting seriously out of shape. I feel that this is something you have to learn for yourself to some degree. Then you can take responsibility for it and begin to live again.
For me, cycling is not an escape route, and neither should it be. Riding every day might mask things for a while, but it’s something to be wary of. I can’t afford to bury my past behind another false wall within my mind. My cycling now represents part of the solution and not the problem. With that in mind I keep working towards this year’s goal, always mindful of each day and only working as and when I can.
So far, public generosity has seen me raise over £500 towards this year’s venture, something that makes me smile. There’s a long way to go still, and the clock keeps on ticking. I’ll soon reach the point of no return and have to make a decision on whether or not I have enough finance and the mental stability to set off. Until then, please keep sharing the link below with everyone you know. It’s the only way that I’ll raise enough to ride once more and take another step forward in my life, supporting others to make that first step themselves.
Please feel free to donate at :www.gofundme.com/21d2eo