(Started writing this as kind of a motivational/informative post kind of ended up a rant, sorry about that!)
A little over a year ago I was suddenly struck down with severe weakness and tiredness, to the point that if I were to sit on the floor I could not get up on my own, at first it was very confusing and frustrating because even getting up from a chair was near on impossible, feeling as though someone was pushing me back down, but physical weakness and uncontrollable fatigue aside, the hardest thing about having an “Autoimmune Disease” is you feel pretty much alone, and when the people around you don’t really understand what it is you have or why you cant just “stand up” it can get very stressful and depressing. I’ve had to deal with being left out of things like going to the beach, camping, and sports because I physically can not do it, I’ve lost jobs and now am unemployed because I physically can not work, even though I look quite well on the outside, inside is a daily struggle of being in pain and tired all the time!
Now… Autoimmune diseases are a very broad canvas, and I personally do not know which one I “specifically” have, but I do know it is non life threatening, but I will have it for the rest of my life, and let me tell you the prospect of that is so friggen scary! I do not know what triggered mine, could of just been my age or could have been from a fall I had a while back, I went through a faze of randomly feeling disorientated and just falling over which my now very scarred up knees have not thanked me for, but… that being said medical professionals do not know what causes these autoimmune disease and their is no “cure”.
Also I lost over 3 stone in 6 months and am still loosing weight now, sounds great doesn’t it, but its really not, its quite scary when you’re not yet diagnosed with anything.
I don’t really know why I am writing this post but I just hope if someone else who has a autoimmune disease reads this they can realise they’re not alone. It has taken me over a year for a doctor to actually take me seriously and get me the help I need, I’ve been told it was just all in my head that my muscles where working fine and there was no reason why I couldn’t move, I was put through Physiotherapy and told to do exercises I couldn’t do, and then get moaned at, at my next appointment because I had not improved. So many blood tests I couldn’t even tell you how many it was I actually have had, and put on various medications which as you guessed did nothing at all.
My point is… If you don’t feel well keep on and on until you get the help you need, I have to have a muscle biopsy at some point in the near future and then steroid treatment (not looking forward to that) but after over a year of being ill it has given me hope that I can get better well into “remission” as they call it, and my life will improve.
(I also wanted to do this post as a reasoning as to why I do not “work” in the normal sense as I have had a few questions on this on other social media sites.)
So yeah… If you have an autoimmune disease or any other medical problem that causes you to not be able to work, (in the conventional sense) what do you do for a living, or do you have any tips on how to make life easier?
I’d love to hear your stories too 🙂