The following is the unedited version of the A day in the life… post I submitted for the mental health blog project for 10 February 2015. I don’t know if that post will be published, but this is the full version of what I submitted (I had to cut it down by over 50%). It’s a bit long, but I think it gives you an idea of the way the thought processes happen when someone is experiencing stress and anxiety.
Quick bit of background… suffered from depression on and off over the last 20 years (if not more) add to that the anxiety that often surfaces as the depression wanes, the constant state of worry and stress that seems to be my normal state, and I can now add ME/CFS to my portfolio of long-term conditions. Hooray.
My ME/CFS seems to be stress-induced so learning to manage my stress and anxiety is very important but my system is so weakened right now from two-and-a-half years of near-constant stressors it doesn’t really take much for me to relapse into depression, anxiety, and severe fatigue.
So today, Tuesday, 10th February I’m trying to muddle through the day feeling very tired and very anxious. Despite the fatigue, I struggle to sleep through the night so wake up many times. Last night was a typical night. I turned the lights out around 11pm and was probably asleep within 20 minutes, but between 1130pm and 650am, I woke up 3 times on my own accord, and one further time due to an inconsiderate neighbour. Each time I woke up I couldn’t get back to sleep for at least 30 minutes. I wondered what time it was, how much sleep I was losing, and how on earth I was going to manage at work. I was definitely going to cancel my social plans. So much for that work/life balance.
Then I started thinking the dark thoughts.
What is the bloody point of life? Everything requires so much effort, and I can’t even manage bog standard things like sleeping let alone bathing, eating well/regularly, exercising, keeping my home tidy, having a physical relationship with my other half, hobbies, etc., etc. So again, what is the bloody point if everything is a struggle? What if this relationship fails? What if I lose my job? Maybe I’ll just move home. I don’t care if I’m a 40-something year old, I just can’t be bloody bothered taking care of myself and putting in effort to do much of anything. Why can’t one single aspect of my life be easy and not require so much thought and effort? Absolutely everything feels overwhelming.
Maybe I should end things with my partner? I’m not worth the time or effort. I’ve gained a ton of weight, I can barely walk up a flight of stairs without feeling winded now. I have absolutely no interest in sex, holding hands or even kissing. I actually cannot stand to be touched by him. I tell myself this is because I don’t love my partner and am not attracted to him. I tell myself I was never attracted to him so why did I bother going out with him in the first place? Am I really going to move in with him in a few months? Why do I seem to be so bad at relationships?
I’m still trying to get back to sleep. I’m having conversations in my head with my partner, my line manager, the occupational health GP, the humans resources people. I’m apologising for being so useless. I’m trying to explain things.
Eventually I get back to sleep, but the neighbours alarm clock wakes me up at 0650. It goes off again 10 minutes later. And 10 minutes after that. The cat now wants out because he’s been woken up because I was woken up. I am feeling so tired from a night of so little restful sleep, so much anxiety from my own thoughts, dream upon dream that can be described as nothing other than anxiety dreams. I am trying to figure out what excuse I can make to avoid going to work, or at least how I can minimise my exposure to the office. I can find no way to do this since I’ve got meetings scheduled with occupational health and human resources regarding my health and capability for work. (No wonder I’m so full of anxiety and worry.)
I fall back asleep for another 90 minutes. I get up around 0845. This is closer to when I was due to wake up anyway. I get out of bed and tell myself to get into the shower. I fight with myself about this. ‘But you showered yesterday, and washed your hair, you could get away with not showering since you did fuck all yesterday’. I decide to shower anyway, it will help to wake me up.
I’m now showered. I feel a bit more awake. I get dressed, I eat a small bowl of cereal. I check I have put everything in my bag that I need — wallet, work notebook and papers, security badge to get into the building, papers from the ME/CFS clinic to take to my two health-related meetings. I decide to cycle to work. I used to be an avid cycling commuter, not a fair weather cyclist by any means, but over the last two years that has waned. This is the first time in a month I’ve been on my bike. I go slow. My joints hurt. I’m tired and I’m only halfway there. I think about stopping at the bus interchange and getting a bus the rest of the way in, but this would still mean a big walk at the other end. I push on thinking about how hard cycling home will be — all those hills.
I get into work and everyone is in. My heart sinks as I remember that I’ve left my iPod charging at home meaning no music to help me focus on my work and not be distracted by all the sounds of the office. One member of staff who only comes in once a week walks in. She vocalised every thought, speaks to her computer and phone, and generally grumbles about everything. This is going to be a long day.
My occupational health meeting is just before lunch. It’s a GP who’s handling my case. I bumped into the woman who previously handled it and said a few very kind things to me. She acknowledged that some recent issues I had with work shouldn’t have happened and have exacerbated my health problems. Now if only the people making the decisions could understand this. The GP was brief, almost like it was a regular surgery appointment but this appointment allowed up to 30 minutes. I felt rushed. I wasn’t able to convey the problems I’m still having with work making decisions for me instead of including me in the decisions, or understanding that some of their processes and decisions are causing me further anxiety and stress leading to a relapse in fatigue. He did agree with the changes that I’ve implemented to work only part-time for the time being was a good decision; and said that the increase back to full time shouldn’t be rushed. At least I know there is support there.
I had to go into town to get lunch and collect an order. The lunchtime crowds really bother me so I avoid going to town normally. I just kept my head down and got what I needed. I made healthy choices for lunch, but bought snacks that I really shouldn’t have given they’re ladden with salt and sugar that I don’t need.
I had my meeting with HR after lunch. It started off OK, but was they mentioned that I’d obviously had some problems with my attendance recently so they wouldn’t look at ‘data’ regarding my working ability. I told them why I have had a recent relapse that has caused absences. The situation at work took many months to resolve causing a lot of stress, but they didn’t want to hear it. I was told it was all my fault. They didn’t want to hear that there was an issue with policy, only that the situation was my own fault. I’m feeling let down, again, frustrated and angry about it. Just when I was beginning to let it go.
Luckily the meeting finished near the end of my workday anyway so after tidying up a few things on my desk and replying to a couple of emails I was able to leave. It was a very unproductive day at work and the last meeting with HR has left me demotivated again.
Afterwards I spoke to a very good friend and colleague about the meeting and what was said. It left him feeling outraged on my behalf. We both continue to be surprised at how poorly things are handled for those of us with invisible illnesses. We joked about going home and cutting off a leg.
Cycling home was even harder than I thought it would be. I had to get off and push at the first big hill. After that I managed to stay in the saddle in the lowest possible gears going at a very slow pace. It took me almost 45 minutes to get home. This is 15 minutes slower than when I’m moderately fit. I was proud of myself for not giving up and getting the bus home, and for cycling up most of the hills.
It’s nearly 7pm and I need to think about dinner. I’ve been thinking about dinner for more than an hour actually, but I’m nowhere near a decision. There’s food to be eaten in the fridge but the temptation to get a pizza delivered is really strong. I’ve already snacked on fudge… I’ve decided on an easy dinner of a quesadilla and salad.
It’s been a long and emotional day so I want to go to bed early-ish, but it’s difficult since I know I’ll wake up far too early if I go to bed too early. I can’t ever win!