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Generating income with cluster headache

Generating income with cluster headache can be very challenging. Employers aren’t keen on having an employee that calls in sick irregularly and more often than others. Having to provide for a family can push you even more beyond your limits then you already are. In this post I will describe what I needed to do to get by. And what opportunities it also has brought me.

Disclaimer; I am in no way a healthcare professional. Everything I discuss here is based on my personal experience. What I describe are my personal experiences and opinions. What you do with the information on this site is entirely up to you. Things that have worked for me might not work for you, as everyone is different. I would always advise you to keep in contact with your healthcare professionals and be honest with them if and when you decide to try some of the things that I have done.

How I generated income with cluster headache

My situation when the clusters first started

As I was still in school when I got cluster headache, I couldn’t finish my education. At the time I had a part-time job in the weekends and a study grant from the government. These incomes gave me the means to be able to live on my own during my study. The cluster headache got so bad that I couldn’t continue my education. They also prevented me from working my weekend job.

My then employer didn’t pay me when I didn’t work (which was against the law). This got me in a bad financial situation with bills piling up. I had to threaten taking legal action against my employer to make him come around. But to be honest it took a lot from me as the cluster headache was so bad at that point in time.

Empty wallet

Welfare

Luckily for me my parents have always been very supportive and involved in my life. They don’t have much money, but they were always there for me. Here in the Netherlands we have a very solid social security network for anyone that needs it. My parents took the liberty to see if I was eligible for some form of welfare. Luckily for me, I was. As I was younger than 21 when I first had my cluster attack, I could apply for welfare especially designed for people who became disabled before turning adult (21 years old).

So I applied and again lucky for me, I got the welfare without much trouble. I’ve heard that other ClusterVikings here in the Netherlands have had more trouble with getting forms of welfare. The welfare I got is basically for life if needed. Of course, they did want me to try and find work of some kind. But first I would get all the time I needed to simply rest. By now we are already 1 year further (the bad year with 8 attacks a per 24 hours) and I desperately needed that rest.

No shame

Generating income with cluster headache can be so difficult, and applying for welfare can feel giving in or even like losing. The reason I’m telling you about this is that it has been one of my lifesavers. I’m not the type of person to want hand outs, but this one I really needed. I had to swallow my pride, but it meant that I could keep living on my own.

So if you are having trouble generating income with cluster headache, please think about yourself and apply for what ever type of befits/welfare that might be available to you. Also, as I have heard from ClusterVikings that have had welfare doctors examine them, and brush clusters off as a simple headache; record an attack to demonstrate the severity. Show it if needed.

After about a year in welfare I was more rested and wanted to do something. Because sitting at home while everyone else is out doing things is very depressing. The welfare department I was in encouraged working and I got a job coach to help find work. Eventually I found a part-time job at a moving company where a friend of mine worked.

Regular jobs

The job as a mover could be combined with the welfare, and so I started out. It felt good generating income with cluster headache on my own again. The welfare provided security for both me and my employer. For my employer the welfare provided discounts on taxes. It also compensated for when I would be sick and not able to work. As this was just a small company, and we didn’t have work every day it was a good fit. During the next few years I kept working there. After about a year or 3 I promoted from mover to acquiring the work.

Mover

Long story short I worked my way up in the moving company and after that I held different regular jobs. The problem with those jobs was that once I started to call in sick it would always lead to trouble. For an employer it simply is too erratic to employee someone with cluster headache. Appointments can be rescheduled once but not twice.

As my handling of the cluster headache got better with the years, and so was my need to have a regular and if possible challenging job. But the fact was that once a cycle would start I could barely keep up with the workload. I would always come up short in other area’s of my life. I came to the conclusion that in order for me to enjoy all parts of my life, I would have to make concessions on my work life.

Taking a step back

My father-in-law held a job at a local sporting facility that was run by local government. As he was about to retire, he suggested that I could take his place. After the interview with his boss I could quickly start. Although I was grateful to be employed again, it felt as a step back for me. Everyone working here has a distance to the regular workforce due to all kinds of different difficulties. The work is quite simple and not that challenging, and the pace of the work is slow. I really needed to shift down a gear or two once I started here.

Sporting facility

But my god, I am so grateful I get to work this job. It provides me generating income with cluster headache, and it gives me a sense of purpose. It takes into account that there might be days that I need to stay home due to the clusters. The overall slower pace of the work has provided me with so much rest and less stress that I honestly believe it has helped control the cluster headache even more.

Step up!

Taking this step back has had a tremendous positive effect on my overall health. The reason I’m sharing this with you is to hopefully let you know that there are other alternatives to the high stress regular jobs. You only need to be willing to step down a bit. And yes it is not as glamours then other jobs, but it pays the bills.

Besides that it has given me social interactions, and even the opportunity to make this site. Something I would otherwise probably not have the energy to do so. It also gives me enough energy to be able to do sports and all kind of other activities. Where before my job would take up all my time and energy, I now have gained an entire social life due to this “step back”. So for me, step-up it is not even a step back anymore, it has been a step-up!

Enabler

When I was in the early stages of my cluster journey, I had a consult with my neurologist. I told him I had difficulty working due to the clusters and overall fatigue they gave me. He told me this was a common thing among clusterheads, but that he had 1 patient that found a way. This patient had started writing, and had just finished their first children book. Because they could do this at night or when ever they were feeling well enough, they had found a way to work around the cluster attacks. Not knowing it then, this planted a seed in my brain; I needed to find something I could do regardless of cluster headache.

Woodworking

For me, it turned out to be this site, and woodworking. Although my woodworking is still minimal, and I can’t really do much of it at the moment, I know my passion lies with both. Now I’m working on creating a situation in which I can do both and generate an income out of it. My current job provides me with the stability and income to be able to do so, it has enabled me to chase my passion. And although I’d wish I already could spend more time on both. In time, I will be able to, I’m sure.

Seek opportunity to find your passion

Perhaps you have an idea of something similar that you could do and love. And if not, then this might plant a seed inside your brain like the story did with me. We spend almost 33% of our day with work, so better try and make it something you truly enjoy.

So if you feel like your job takes all your energy, please take it into consideration to change jobs. Try and do something that might not be as challenging. You will gain an entire world I’m sure of that. And from that you will have more time and energy to think about what it actually is you wish to do in life, and start working on that. Because when you are stressed out and overwhelmed by your job, you simply won’t be able to do that. And finding and having a passion you can put time and energy into is so needed when you have clusters!

In the next post I will go into what I would do differently now if I had a do-over with cluster headache.

Remember friends; you ALWAYS win!