What do you actually *do* when you’re off work?

As  many people will know, I’ve been off work for a number of weeks, now.

I had a fairly major depression relapse at the end last year, and though my job is something which I love and find to be a really positive influence on my mental health, it reached the point where I was unable to do it.

Since being off, I’ve had a variety of responses from people. On the whole, the people I communicate with are pretty mental-health-knowledgeable, so thankfully I haven’t had too many comments which have made me roll my eyes/want to punch a wall. Nevertheless, I have had people ask me what I do with my day, and get frustrated when I don’t manage to do certain things. To be honest I have caught myself wondering similar things at times. Then today, I was listening to the radio and they were sharing stories of ‘National Sickie Day’, one of which included a man who’d got ‘fake diagnosed’ with bipolar disorder in order to take time off work (which makes me all kinds of angry).

Given all of that, I thought I’d try and share with you a bit of what I do with my time, and why it’s not really fun being off work (because trust me, I’d rather not be).

For the first week or three, I don’t remember much of what happened. I couldn’t really talk or move. I would move from my bed to a chair in the lounge at some point during the day. I crocheted a lot, but don’t remember doing any of it (the muscle memory in my hands is wonderful). I think I had the TV on. I assume I must have taken in some fluid, and perhaps some calories too. I know when my flatmate came home she would ask me a basic question, and it would take me thirty or forty minutes to reply. At some point my GP increased my medication (so I must have made it to the surgery), and that only made the lethargy and brainlessness worse. My brain and body just switched off. I remember a couple of people from the mental health team coming round but I don’t remember what they said. I don’t remember even looking at them.

One day, the day before a GP appointment, I decided I was well enough to go back to work so I was going to cycle there and back to prove it. By the time I got there, I couldn’t feel my legs. By the time I got back I couldn’t stand. I realised that maybe work wasn’t something I was going to be able to persuade her was a good idea that particular week.

Christmas happened. It was a weird week. I did a mini tour of people I knew a few days before. I can’t remember what I did on Christmas Eve. Christmas Day I went to Dad’s for the afternoon. On boxing day I was only awake for about 3 hours… it was a similar story the day after that. Time just kept happening and I just kept not.

Fast forward a few weeks to now, and I’m still off work while we wait to see what happens with the new medication I started ten days ago, but I’m doing a little better (or as someone said the other day – there are now ‘glimmers’ and ‘some smiles’). The exciting thing about psych meds is that you’re never entirely sure how they’re going to work. You also have to start them off small and titrate the dose up over a few weeks, so it can all take quite a while before you notice any change (positive or negative). When I first started them, I noticed nothing, then at the latest increase, I think I had nearly every single side effect going, so that wiped out a few days. I’m increasing again in a few days time so who knows what that will bring.

To give you an example of what I do with the days I’m not bedbound, today I woke up at a ‘work time’ I got up and went to the bathroom but I felt incredibly poorly and there was buzzing in my head due to last night’s medication making its way around my body. So I got back into bed and put some podcasts on for a few hours, waiting for it to go. I drifted in and out of sleep a little bit which resulted in some truly weird dreams (my brother got eaten by a gorilla, it was very traumatic!). Eventually I got up and tried to start my day. I needed to get to the chemist, because my body is currently reacting to literally anything (thanks new meds) and I wanted some advice on what else I could take (anti-histamines weren’t cutting it). I needed to drive there, and in order to drive I needed my brain to work well enough. However, as with every other day, having taken my morning meds I was mildly drunk for a few hours (although, that is beginning to improve slightly), so it was gone lunchtime by the time I made it to the chemist. I’m exhausted from my trip out. This evening I need to shower which always takes a while. I sit down in the shower now because I run out of energy to stand up halfway through. Eventually it will be bedtime. That’s an interesting one at the moment – on top of my body currently struggling to digest food without giving me pain, the meds I’m on make every single limb hurt, so I sleep slightly propped up on some big cushions, with every part of my body supported by a blanket/soft thing. Sleep is a relief when it happens.

Tomorrow it will start all over again. I have an appointment so that will be the trip of the day, I imagine. Some appointments are ones I can go to and come back from and that’s that. Others require a lot of mental preparation, and sometimes many tears afterwards; those appointments can take a whole day (or more).

Since taking time off sick, I haven’t had my haircut because I feel like if I can do that, I can do work. I haven’t done any fundraising for Mum’s fund, because, I feel like if I can do that, I can do my job. I feel guilty meeting up with friends, because again if I can do that, I should be able to do my job and the truth is, there are very few friends I can meet up with. They have to live within a very short driving distance because I struggle with the concentration to drive too far. They have to understand that I often blank words during sentences, so meeting up to have a chat can be really tricky. It’s much better to meet up and do *something* but that something should ideally be done sitting down because energy is something I have a very limited supply of.

Unfortunately, with a mental illness time-off-work stint, there’s a less clear-cut idea of when a person will be well enough to return than if you were off few flu or something (it would be nice if it was that simple). I will be off work for at least another few weeks while my medication (hopefully!) settles. Hopefully after that I’ll be able to gradually return.

I wish I was able to go back tomorrow. I miss the people. I miss the structure. I miss the routine. I miss having a purpose. I miss feeling like a person rather than a list of symptoms. I miss feeling like I’m worth something. I miss feeling useful. I miss all of it.

I don’t know how well this explains things to an outsider, because a lot of the time I hardly understand my condition(s) myself. My plea to you is please don’t take ‘fake’ sick days, because it only increases the stigma surrounding those of us who are genuinely unwell. Please don’t shame myself or my friends who are off work due to illness, or who are managing to stay in work, but struggling with engagements outside of work. None of us want to be this way. We want to be excelling at work, planning our futures, seeing our friends, going on road trips, raising money for charity, climbing the odd mountain, and spending time with our families. We want to be living but we’re just currently struck struggling with existing. We already feel guilty and frustrated with ourselves, and we know it must be frustrating for those around us too, but please don’t add to our guilt, because it just makes us feel worse. If you want to interact with us in any way at all, please try to speak to us with compassion. We will hopefully get there, it might just take a bit of time.

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2 thoughts on “What do you actually *do* when you’re off work?

  1. Naomi

    It must have taken you a very long time to write this but it sums up exactly how you are feeling. When I have been off for weeks (torn ankle ligaments, infected blisters) it takes 6 times as long to do even the simplest things and the day goes by just trying to exist.

    I am sending love and positive vibes and have been doing a bit of crafting for Mum’s fund. I have 2 pairs of fingerless chunky gloves, a nearly finished scarf and some cards I have taken to work. The good news this year is anything I raise will be matched by HSBC so I am planning on crafting with you to the common goal.

    Let me know what else you want me to make. All suggestions welcomed of what you think will sell. Jean has given me 6 jars of marmalade to sell as well.

    Lots of love and hugs

    Jxxx

    >

    1. Aw that sounds amazing! I’ve been triyng to make a few bits (confidence permitting) to put on etsy with the idea a % will go to the fund. Things I’ve made lately include tiny crochet baskets (for mini eggs) and creme egg hats… they’re super super quick to make up (I made up the creme egg hat pattern if you want it, and I’m going to make it into a cat/unicorn/something too, the basket one I found on pinterest/ravelry) so hopefully might sell a few of those… I was considering making some cards too but haven’t got very far with that as of yet.

      Thank you so much

      Xxx

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