So considering the ATOS medical attempts to assess you based on a typical day – here is mine, without the blinkers they put on to avoid gaining a proper assessment.

My typical day when on a downer.

I got to bed sometime between 12 and 2. I often am too tired to bother to put on my creams and often forget to take tablets and inhalers. I’m exhausted but I often toss and turn for hours, falling asleep typically between 1 and 3 but sometimes as late as 5am. I listen to the birds and sometimes wonder why I’ve bothered getting into bed to get some sleep when sleep is so elusive and getting to sleep is so stressful as it is so unlikely.

My alarm goes at 8am and I get up sometime between 8 and 10. I have various activities to get up for – courses, volunteering, morning prayers/communion.

I shower, wash and dress. I manage to take my antidepressants, other tablets and inhalers but compliance with creams is variable. Rubbing on 3 different types of creams just feels overwhelming and impossible. In an attempt to get out to whatever planned activity, I skip breakfast – to make it takes effort and time, I can’t be bothered. Sometimes I manage a mug of water, chocolate or cake, something easy and simple, but usually not healthy.

I either sit through training, go to The Well and help make lunch and play with kids, while attempting to put on a coping face to the adults so no one worries too much or play with kids at crèche, following their lead.

I return home. Lunch is never planned. I usually grab something on the way, samosas for 20p, actually apart from that, I’ve no idea what I eat for lunch. We eat together at the Well. Sometimes I pop round to friends and they give me lunch. I usually eat something, but who knows what.

Having got up and out, I get back into bed. Here I read drivelly, easy to read fiction, crochet mindless patterns – granny squares and scarves, sleep or surf the internet and watch tv online. Time is to be passed and filled. Aimless but to reach the next day.

I can manage the mindless but jewellery making or card making involve too much brain, too much thinking, deciding what to put with what. For the 1st 6 months after being signed off sick I couldn’t make jewellery and even now I’ve only managed on 2-3 occasions.

I worry about my professional status. Reading journal articles or other professional magazines is too complex for my mind to deal with. I signed up for a conference but then didn’t attend as I couldn’t see any way that I could concentrate for a whole day. CPD is beyond me.

I failed my driving test, one of the reasons was most likely due to my concentration and after 3 hours of driving I was probably too tired to perform well at my test.

On Wednesdays I get up out of bed again to go to my church small group. With me are my vicar and his wife and a couple that knew me in my student days. It’s safe and people care and keep an eye on how I’m doing. I’m usually the first to arrive – I’ve no kids to put to bed. It gives me a chance to share how I’m doing with my vicar and his wife, even if I think I might chicken out of sharing with the others. I do the bible study alone before I go, it’s the only way to attempt to be able to concentrate and engage in the discussion. We pray for each other, and on my worst days they pick up life is tough and just pray for that. On the worst days the vicars wife gives me an extra long hug.

On Sundays I attend church. I put on my smiley coping face. I can just about keep with the worship and liturgy but I hardly get any of the sermon, I just can’t concentrate. On occasion I feel like I’ve blinked and missed the key point I needed to hear, on other occasions I ask the vicar to email me the talk so I can read it later to myself. I try to be sociable and friendly but talking to strangers and making small talk with people I don’t know well is a huge effort. Sometimes it’s much easier to simply chat and play with the kids. On one occasion I spent the whole service in tears. At the end I then managed to put on a happy face, determined not to spoil the day for anyone else.

Dinner is difficult to make and prepare. Shopping is done randomly and poorly planned. Food is bought when reduced and I stock up on crisps, chocolate and cereal bars. At least they will provide some emergency nutrition. I often forget to buy meat. I keep some stuffed pasta and tinned tomatoes in stock for emergencies. Sometimes I just resort to toast. Other days my friend tells me to come over for dinner. Sometimes I’ve popped round in an attempt to stay connected and ensure she (various stay at home mums) doesn’t feel isolated from adult company, and while I’m there I’m fed lunch or dinner. I feel pathetic being unable to feed myself, a dietitian and an excellent cook, yet it’s just too complex. What I’m eating and how well I’m cooking for myself is often the best indicator of how I’m doing.

I often take my dinner up to my room, avoiding the company of my housemates, eating in bed. Alone is better than being with strangers.

Sometimes I burst into tears for no reason, an image in a story, can bring up tears for the life I don’t have.

I try to maintain a semblance of normality, a routine, daily activity. I don’t manage any exercise as an hour and 15 each way by bus, doesn’t encourage me to attend. People say if I can do voluntary work, courses and craft groups, I could work, I only manage a few hours at a time, the pressure is off, if I don’t want to go, it would be find and activity can be adjusted to how I’m doing. I push myself and try to cope as well as possible. Sometimes I feel helping myself doesn’t pay, to the outside world I’m just seen as a scrounger who should get a job.

Advertisements