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Three weeks done, 40 years to go (hopefully)

A blog covering the fears and surprises of the first “grown-up” job throws at you – and how Gréta is trying to cope with it all.


Three weeks of my first full time graduate job are behind me now. I intended to write a mini blog at the end of each week, but my body (particularly my rare diseases) had a thing or two to say about that. Anyone else living with various conditions knows that for many of us, it is near impossible to stick to rigid plans due to the nightmare called unpredictability. So, here I am on the Thursday of my third week finally writing about my experiences so far–let’s take it one step at a time though.


9 am, 20th February: the official start of my employment. After an hour or so of my first call with my line manager, I was relieved on so many levels: first off, our department promotes making “user manuals”. Everyone creates their own, describing preferred working patterns and hours, preferred way of communication, how you work at your best and things you struggle with. I think every workplace should make this a thing! It is good for people with and without rare diseases, plus, it normalises not assuming that everyone can do the same hours and work the same way. So, now I don’t have to explain every time that I am hearing impaired, that I rely on the combination of lip reading and closed captions [CC] to aid my hearing or that sometimes my days will have to change if I have a flare. Perfect!


[Quote to the side of previous (2nd) paragraph: “our department promotes making “user manuals”. Everyone creates their own, describing preferred working patterns and hours, preferred way of communication, how you work at your best and things you struggle with”

As I am new to the organisation and the department, there was a lot of mandatory induction material to go through in my first two weeks. One of the first was a workstation assessment. I primarily work from home, so they have to make sure it is all up to their standards. Once putting all the information in, the form said I had to get a new office chair—it was right! The chair I started with (and still using at the time of writing this as the new one is yet to arrive) is just not right for me. It is a hand-me-down and gives me horrible coat hanger pain (a type of pain that is affecting the neck and shoulders, something I am prone to as someone with POTS) which 9/10 times triggers a migraine attack.

A cartoon squirrel sitting in bed under the duvet while on the bookshelf next to the bed, an iPad showing the grid layout of a viedeo conference
Attending meetings from the bedroom

As I said, I work from home currently and it is something that will stay like that most of the time. But the type of work I do will require me to attend certain meetings in person, so asking for adjustments to be put in place gave me huge anxiety. I knew they could not (legally) fire me for needing “too many” reasonable adjustments, but the nightmares leading up to the talk with my line manager about it showed that my subconscious was not convinced by this at all.


Why was I so worried? I live in a rural area where public transport is few and far between, so I would need a car to get to a train station for example. I cannot drive without supervision as a POTS/migraine flare is unpredictable and can be triggered by something like a cat walking across the road (which has happened before). But my husband, who is also my carer, works full-time from home and for him to drive (with) me there and back is not feasible. There is no one else to drive me. Plus, I use a wheelchair which, actually, is causing the least “trouble” of all. If anything, it makes my mobility much easier! Anyhow, with all these worries in mind, I joined the call with my line manager who was amazing! They were understanding and made me feel like the reasonable adjustments were just that. Reasonable.


So, the first week, perfect, wasn’t it? Yes, well… No. I have complex PTSD (cPTSD), a mental health condition that is very similar to the “traditional” PTSD, with the added presence of feeling worthless, ashamed and guilty. My symptoms have been worse prior to starting my job and during the workweek, I thought I was on top of it. But if you also have PTSD or a similar mental health condition, you might know what was coming.


That weekend, I remember finishing on Friday and went straight into a panic attack. My old coping mechanism from 20 years in education, also known as keeping myself busy with work, was helping me through the week. But, like an addict, when it was suddenly taken away by the weekend, I freaked out. Long story short, this cPTSD episode triggered a migraine attack spiked with a fibromyalgia that knocked me out completely for the weekend and, instead of resting after such an event, I clocked in at 8:15 on the Monday for my second week of work. And this is why I did not write a mini blog at the end of my first week.


But surely, I could make the missed rest up on the second weekend, right? I wish. The second week was very much like the first workwise; loads of inductions and learning the ropes while also actively getting involved with the ongoing work. I was getting more comfortable with the people I am working with and also feeling like I actually belong somewhere. However, my period arrived on Friday morning. For me, that means another migraine flare. That was also the day when I truly realised the benefit of flexible working. I would have struggled getting a day’s work done only between 9:00-17:00. I won’t bore you with the details of the weekend, it was mostly me lying on the floor in pain.

Cartoon squirrel lying on the floor face down with head in the pillow. Word-bubble says the words: “I did not sign up for this”
I did NOT sign up for this.

So, third week, huh? It had a rocky start with the migraine lingering around until Wednesday and there was an increase in workload which I welcomed as a coping mechanism. By the end of this week, I managed to figure out how I best work from home and how I can look after myself: 1 litre water bottle on my side, pedals under the desk to keep my circulation going (#POTSproblems) and a ton of reminders both on- and offline. I also want to mention something that I am the proudest of in this role so far: my line manager was organising an event and they sent me the key questions they wanted to ask from the venue to aid my note taking during the meeting later that day. I gathered all my confidence and asked them to enquire about the accessibility of the site and to include related information in the invite. My insight was well-received and something they did not originally think of. I know it was small, but it makes me happy to know that my recommendation may have made a potential disabled attendant feel more welcomed at the event.


These are the key lessons these few weeks have taught me—I am sure there are many more to come! I think I am getting better at managing my very unreliable illnesses while slowly building up the courage to talk about it at my workplace. I would be grateful for any tips, tricks or thoughts that come to your mind when thinking back to the time when you first started working. Hopefully, by the time I am writing my next blog, I will have a proper chair and have figured out how not to trigger migraines while mainly working in front of a screen. See you then!

 

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