The Day My Life Changed Forever
People say, “Do you remember where you were when so and so happened, when Diana died, or Lennon was shot?”; for me, the question is, “Do you remember where you were the day your life changed forever?” I do; I was driving along by the local supermarket and my mind went blank. For the life of me I couldn’t remember how to change gear; I panicked as I was in a flow of traffic and in the turmoil coasted into the supermarket car park and stopped. My head was thick and I couldn’t understand what was happening.
I had a busy life: I had spent eight years in the routine of taking my son to school, going to work in an extremely busy role where I had to be very organised and put others’ needs before my own, leaving work to pick my son up, then going home, running a home, being a mother and wife. Even the school holidays, which I had off, were spent occupying a little one’s busy mind, always as a mother putting his needs before my own, but I didn’t mind, I wanted to be a good mum and enjoy my son. There was no time for ‘me’ and I never really noticed this until I became ill with depression and Seasonal Affective Disorder (SAD) and attended therapy sessions where I was encouraged to take time out for myself. After four years and prescriptions for anti-depressants I decided I needed to change my life. I left my job and started a part-time degree course whilst working part-time to bring in an income. My son was older now and was striking his own independence which gave me time to study. I picked up an evening class as well to boost my chances of employment when my degree was over. The part-time job I had came to an end due to funding and I secured a new role.
This is when the change happened. I had spent the Spring with a terrible cold and couldn’t stop coughing; the cough lasted for months and disrupted my exams in the May of my second study year. I started the new role in the June and by September was asked to leave due to not ‘meeting their requirements’. I wasn’t surprised. I felt like I was continually recovering from the flu: hot and cold fluctuating sweats, a thick head – it was like trying to think through treacle. I couldn’t remember anything and was overcompensating, which was turning me into a nervous wreck.
I started writing down my symptoms – a list which I found the other day when filling in my Personal Independence Payment (PIP) application form. It made me smile as everything on the list is still apparent and it made me realise that ‘this – M.E.’ was what was happening to me at that time. I approached my General Practitioner, who ran bloods: all were clear, and after several visits to discuss ongoing symptoms, changing symptoms and new symptoms he finally declared, “Have you heard of M.E.?”, at which point I cried like a baby. A chap on my degree course had M.E. and I instantly thought “I don’t want to be like that”.
Having been let go from my job I took eight months off to try and feel better. I couldn’t tell you what I did particularly in those eight months – I can’t remember what I did yesterday – maybe it would have helped to keep a diary, but I think I thought that this was going to go away and I wouldn’t need to remember, I don’t know. I did do some voluntary work ‘as and when’ to keep something on my CV and finished my degree. In my last set of exams, I was entitled to use a laptop as I can’t write more than a couple of sentences, extra time and a rest break; I also had a one-to-one invigilator in our own room, which was really helpful.
After the eight months off I did feel strong enough to look for work part-time. I started working in a role where I was responsible for delivering qualifications to apprentices in the workplace. I was in awe of the title and prestige when I told people what I was doing. I felt it was just reward for the hard work I had put into my exams and studying and that I was able to do this with the symptoms of my illness by just working part-time and taking it steady. I coped well at first; my manager knew about the M.E. and was good, giving me accounts close by to minimise the driving, but the demands of the role changed fast and frequently, continually requiring new learning on the part of staff, continually requiring us to be aware of timescales to be met and dealing with the challenges of working out on the road. My practice was graded as ‘outstanding’ and I was always praised for the quality of my work and the relationships I maintained with employers and learners, but it was taking its toll on me.
Sadly, earlier this year my father-in-law passed away. This made an impact upon me that I really hadn’t expected or anticipated and coupled with starting to realise my job was continually ‘taking’ from me, I came to the conclusion that I just had nothing left to give. It’s terribly sad and quite soul-destroying as I know if I wasn’t unwell I would be thriving and looking for promotion, but acceptance is a huge part of life changes, whatever they be.
It took me a long time to accept this illness, reading and researching to see what causes it, why it had happened to me, what I could do to help myself and if it would ever go away. I had investigated toxoplasmosis with my GP as I have indoor cats, but the results came back negative. Acceptance came and now it’s had to come again, in a different guise this time. I knew as soon as I sat down in front of my computer and cried when I returned from leave in May this year because I had so many emails to deal with, that I had to leave. I couldn’t risk returning to depression and crying like this was the first sign all those years ago, except then I didn’t know and this time I did.
I didn’t want to ‘throw the baby out with the bathwater’ and reflected upon the conversation I had had recently with the physiotherapist I had met through the National Health M.E. Service. He had brought to my attention that ‘reasonable adjustments’ could be made at work to help people manage better. I thought about this and realised, due to the nature of my role, that the only reasonable adjustment that could be made would, because of the changing nature of the role, only be a short-term adjustment and that it wasn’t just a case of perhaps buying a better chair to sit on or providing different rest breaks, so rather than go down this route, I chose just to leave. To be honest, I felt so unwell I have welcomed the break away and I didn’t want to just go off sick from work and have this on my record. I would have also been letting people down and this isn’t in my nature.
So, since July this year I have been at home. I meet with a clinical psychologist through the M.E. Service and am currently tasked with colouring in a chart depicting my day. Red for high impact, orange for medium, yellow for low, green for rest and blue for sleep. My blue and green pencils are the shortest from being continually sharpened as they seem to be the ones I use the most! We are also working on defining the quality of my rest time by looking at the activities I carry out – for example, writing this piece. We have discussed how beneficial it can be for your mind to just focus on one thing at a time rather than running at 80mph constantly with so many thoughts and actions to be carried out. I like this way of thinking, slowing my mind down and letting it take a break; for so long I have woken up in the night remembering things I had forgotten, struggled to think straight or get my words out in a comprehensible sentence, that to give my mind some time off is really quite calming. I haven’t fully got the hang of it yet as I keep letting my mind wander, but I have put some relaxation music on my iPhone now and am going to use this to try and focus on.
Prior to meeting with the M.E. Service, I had bloods run for them by my GP; my GP called me when he received the results and informed me that I was at risk of diabetes – “You need to lose weight”. Yes, I know, I thought, but this time it’s for real. My GP turned to me and said, “You don’t want to be an M.E. sufferer with diabetes”. He gave me free vouchers for Weight Watchers, I lost four stone in a year and am so proud of myself. My change of diet brought on gallstones and in February this year I had my gall bladder removed as I was experiencing excruciating pain at the hands of stones stuck in my duct. The hospital was brilliant: I was really worried about going under anaesthetic, having never done so before, and after discussing this with them they put me first on the list so that I had the longest time in recovery. The nurse on the day ward said to me, “You don’t agree with anaesthetic do you, why are you still sleepy?” I explained I have M.E.; she said, “Oh, I’ve never met anyone with that, do you mind telling me about it?” I was shattered so just said it’s mainly fatigue and pain, then went back to sleep.
I couldn’t have continued at work being unable to think or concentrate properly, the fatigue aggravated by the tiredness caused by the continual hand, wrist, arm and shoulder pain. As I was misreading information in emails and getting the wrong end of the stick, struggling to understand learners’ work against the marking guidance and taking so long to do anything, my working hours were longer than they should have been, making the fatigue an ever-decreasing circle and self-defeating. There was the embarrassment of not being able to get words out or think of the right word to say. Then the everyday tasks of having to plan your week around washing your hair as it hurts to do this, so you try and put it off or get someone else to do it for you, relying on someone else to peel potatoes for you or having to pay to have the shopping delivered – the list goes on, as we all know – and now the degrading task of the PIP assessment form.
I had my PIP assessment last week. I was distraught before I even got in the room with the assessor as I don’t like talking about my symptoms. The assessor was gentle and helped me feel at ease but all the same, it wasn’t a pleasant experience, which, to be fair, he acknowledged and did have empathy for.
I don’t hold out much hope for a positive outcome, but why should we be penalised for being ill? I now cannot contribute to a pension which means this illness will impact upon me for the rest of my life financially as well as physically. I sent an email to Lloyds Bank the other day challenging their new Cancer Support Service – yes, I applaud your idea, but what about people suffering with other serious illnesses? Can’t they have your support as well as they are potentially financially compromised? It seems we have a long way to go to allow others to understand; it’s the same old adage: because you can’t see it, you don’t understand it’s there or what it’s about. Isolating, frustrating, tiring and downright unfair, and not through any fault of our own, having to explain to people and sensing that they try to understand – welcome to the world of the M.E. patient!