AS Ruined My Life. Now trying to get it back together.
I'm not a native English speaker. Please forgive my mistakes! I've been mistreated so many times with "professional" help, so I would like some advice from people that are going through the same things that I am.
First of all, after a really severe first period of symptoms, I was suspected of having AS. I was young then and about to start my professional career. I recovered from the first symptoms which took several months, and I had pain that I wish nobody would ever experience. After that, I got a good job, but symptoms were bothering every now and then. In my country, the best way to get good healthcare is through the healthcare organized by your employer. But in the end, they are also looking at the benefit of the companies.
Nothing out of the ordinary
So many times I was told my pains were nothing out of ordinary and there is no need for further consultation of rheumatologists. I was made to believe I don’t have AS, and of course, I wanted to believe that as well.
The pain itself has never been the worst part. Back pain is easily kept in control with medicines. Sometimes I get chest pains at night. Those get better after waking up but messes up my sleep. My feet also hurt sometimes in the morning, but after a while, it gets better. But the worst part is constant tiredness. I’ve been depressed sometimes and pretty much all of the anti-depressants take my energy away. In the evening it gets a little better. But then I would need to sleep. It’s a vicious circle. Even when I’m not depressed the tiredness and lack of energy are really harmful.
Enough is enough
When I was still denying that I have AS, I had to quit my job until it killed me. I was going through a period with pains and bad sleep. I was trying to work normally, even though at my best I was still at the level of a normal person 2 minutes after waking up. I felt sick in many ways. I got the maximum sick leave that you can get in this kind of cases (2 weeks), which was followed by a managerial interview soon after. 2 weeks did nothing, I was almost sleeping the whole time. When I returned working, all the tasks from the past 2 weeks were waiting. After a few days, I had to quit.
During the next years, I was changing my career. Trying different jobs, even self-employment. But at some point, it falls apart. As did my hobbies and my relationships. After getting some new symptoms I finally admitted to myself that yes, I’m living with the monster called AS. To assure it, I traveled to another country to get an unofficial diagnosis from a rheumatologist, and he agreed it was AS. The thing is that so far officially in my country I’m healthy as a horse, with occasional back pains and other minor problems. That’s good for me because otherwise I wouldn’t get hired.
Planning for the future
I’m trying to make plans for my future, taking into account the option that my symptoms will go worse. At the moment, I am looking for a new job once again. I’m highly educated, quite analytical, and also realistic. I estimate my best option is to keep pushing as long as I can, hopefully being able to work for 5-10 years more. I will try to save every penny that I can, invest it for my own retirement fund, and when I have enough saved, I try to enjoy freedom as long as it is possible. Unfortunately, I am all by myself. I don’t have the luxury of getting help or for example inheritance.
As I mentioned, my biggest problem is being tired constantly. I’m also suffering from stomach issues which make it even worse.
How do you deal with tiredness? Is there any medication for it? Currently, I’m not taking any medicine constantly, only painkillers when absolutely needed. I have brought this up with doctors, but because my blood tests have been normal, nothing has been done.
Do you use the word disability to describe your AS?