Since I was diagnosed, I've never been able to do a full-time job. I've had numerous part time roles, in various fields, but working full-time was beyond me.
It was the fatigue that was the hardest thing. I would get run down and then have to have a couple of days off ill, so my working has always been sporadic. However, I like to think I always caught up and did a good job. When I got my first permanent job in Bristol, I felt elated. It was a good job in a well-known establishment and I had a real sense of accomplishment. I told them about my MS in the interview, when they asked why I only wanted to work part-time. They were very understanding and I settled into the job well.
I was there for two years, before the recession hit.
That's when things started to go pear-shaped. Pressures were put on my boss at the time to get rid of people, and I guess I was the 'weak link' having more sick days than other people. So they tried to get rid of me. Naughty naughty! Though they knew about my MS, they complained about the amount of time I was having off and said
'They didn't realise I would get any worse when they hired me'
Funnily enough, neither did I!
MS is a progressive disease that is unpredictable, so it was clearly a lack of understanding. The thing that was really galling was that they were perfectly happy with my work, and I always caught up if I was away.
I had to get the union involved, which was extremely stressful. I also received help from my Mum's friend who is a lawyer. The fight was on, and I hated it. I felt it put me in an awkward position at work, and having meetings to justify my absence was so difficult. In the end, the workplace offered a voluntary severance package, which I decided to take. As it goes, I found out I was pregnant not long after, so it was completely the right decision to make.
The Natural Cupcake Company
When I received severance, I decided that I was going to set up my own business - a vegan cupcake company. Something gentle, just to keep me occupied. The reason I sold vegan cupcakes, was because I often made vegan cupcakes that were Swank diet friendly, and they always turned out really well. I sold to a monthly market, which meant I could manage it (though a days baking before hand always used to take it out of me). However, I was working for myself, which was a game changer. No more pressures from people making me think I was letting them down. It went really well....but then once Lib came along, I realised I couldn't juggle being a Mum with work. I just couldn't get my head around it, and I didn't have the energy. So I put the cupcake company on hold, and vowed to go back to it at some point.
It was only until fairly recently, when both the kids were at school, that I decided to start it up again. It was a big success, but again I just couldn't maintain it. Though my MS was fairly stable, my anxiety flared up, and I was really really struggling. In the end my fatigue and anxiety, made baking and especially delivering cupcakes a real issue. I had given myself another purpose with working and it felt great to be earning some independent money, and doing something for myself, but sadly it just wasn't sustainable.
Coming to terms
I made the difficult decision to give up work again, and had to come to terms with that, which was difficult. I am in the lucky position where I don't have to work for the money, but I've always wanted to work for my own sanity! It's nice to have something to do aside from looking after the kids. As an MS sufferer I've always tried to partake in life to the best of my ability, and giving up work has been, in my mind, a blow to that. Again, it comes down to this desire to be 'normal', and normal people work right? Or do they? After all, not that long ago it was much more common for mothers to stay at home, become a dutiful housewife when the kids are young, which I guess is exactly what I'm doing. I think the way to go forward is to just concentrate on doing things within my limits, and make peace with that. At this point, I still am able to do much more than I expected when given my diagnosis 20 years ago, and I have two beautiful children, so I've exceeded my expectations which is great.
Thinking outside the box
I didn't consider volunteering a while ago, but then the lockdown hit and the charities I looked at weren't able to take on any volunteers. It's always something to think about in the future, if I did feel the need to get away from the house and meet some new people. I think that's the whole benefit to working though (aside from the money). You get to bond with other people, and especially if you volunteer, you automatically have that in common because you have chosen to be there. There are so many charities that need help so I'll definitely bear it in mind.
Writing for me, is extremely important at the moment too. It's cathartic, I enjoy it, and it gives me a bit of structure in the day. I'm actually starting to write a book based on my blog, and it will be really interesting to see how that turns out. I've realised I've been blogging for 10 years....so it's the longest 'job' I've ever had!
----------------
Needless to say, working alongside MS is a challenge, I think mainly because of the unpredictability of the disease. Being ill one day , but fine the next doesn't go hand in hand with a steady job. You either need to find an extremely understanding workplace, or find something that fits around you. Depending on your field, self-employment has it's advantages and disadvantages. For one, you can listen to your body more and be more flexible. On the other hand you don't have the security, and benefits such a sick or holiday pay.
I dunno, until the day that I get paid for writing, I'm sure I'll never accept that I'll find suitable work for me. I just don't know where to start with the 'paid for blogging/writing' thing though. Maybe I should go a course?!
No comments:
Post a Comment