Most people think that when you are on disability, you are so lucky. In fact many people will come out and say to you “Oh you’re so lucky to be on disability, you don’t have to work and you still earn an income. What more could you ask for?” Well let me tell you how very, very wrong you are.
I have been on disability now for 10 years. Prior to that, I had a job that I thoroughly enjoyed. It kept me busy and it kept me socializing. I really enjoyed my job. Obviously there are always times when you have bad days at work … no denying that, but on the whole, I really enjoyed my job.
Okay so then came the point where my doctor said to me that he was sorry, but there was nothing more that he could do for me as I suffered from debilitating Fibromyalgia. His recommendation was that I get medically boarded. He then gave me a report confirming that I am to be medically boarded. I then had to claim disability through my insurer as I was covered for income disability. This was no easy process but it was approved.
Okay so what happened next was a great relief that I was able to rest due to my Fibromyalgia being so bad. It was very, very hard to work while I had this condition. There were days when I could hardly walk due to the very painful spasms in my body, not to mention dealing with all the side effects of all the medication that I was on. But then what happened along the way was that my purpose was taken away from me. So I have no purpose in life. I would wake up in the morning and not know what to do with myself. I was kind of stuck, patiently waiting day in and day out for a cure to be found. I researched so many things about Fibromyalgia and tried so many treatments. In essence all I wanted was to be cured and return to the life that I once had and of course become the person that I once was. Sadly that wasn’t to be.
Unfortunately, as mentioned, I have been on disability for 10 years now and what I wouldn’t give to go back to work! What I wouldn’t give to have my health back! What I wouldn’t give to be useful again in the work environment. These things are what make you YOU!
There are a a lot of reasons why I am unable to return to work. I will highlight a few just so that you can get an understanding of my predicament. In my job I used to drive a lot to see clients and suppliers. I am now incapable of driving a lot. I often get lost. I drive down streets that I always use, and all of a sudden I will not know where I am. This is a very frightening experience. I permanently drive with maps on and even with that, it will still happen. Sitting in a car for a long time is impossible. There is no such thing as taking road trips anymore. If I do, it is really, really painful. I can’t explain to you just how sitting in a car in the same position for a couple of hours makes me feel. I have to take loads of painkillers in order to do it, and then I am only a passenger.
Okay, then we have the cognitive difficulties that I have to deal with. So I would go into meetings, and have to perform calculations that I knew like the back of my hand. I would all of a sudden forget how to do them. I would get into a conversation and would all of a sudden forget what I was talking about. I have a word finding disorder too, which is all part of Fibromyalgia. So I would be in a conversation and the word that I wanted to say would be stuck somewhere but I just couldn’t get it out. I started to look like a blithering idiot. I certainly could not hold down meetings with directors and high ranking people.
The next problem that I have is sitting in the same position for an extended period of time, for example at a desk. This I am unable to do. My entire body starts to ache and my spasms get worse and it is just excruciatingly painful. I get stabbing pains in my back, neck and shoulders and will then suffer for the next couple of days because of it.
Another thing that I have is Chronic Fatigue Syndrome. This means that when I wake up, I am exhausted. I go through the day exhausted. I am not talking about feeling a little bit tired but you can push through, I am talking of physical exhaustion to the point that I cannot function. This is probably, for me, one of the worst aspects of Fibromyalgia. When you are so tired that you are unable to clean your house. When you are so tired that you cannot get out of bed. When you are so exhausted that you are unable to cook a meal for your family. Sometimes I might have a bit of energy in the morning, courtesy of medication that I am on, but guaranteed by the time 3 or 3:30 comes, I am ready for bed. I am too exhausted to do anything else. Showering! Showering is exhausting believe it or not. It is exhausting to straighten my hair. It’s exhausting to do anything you can think of. As a result you end up spending a lot of time in bed and this is so bad for your mental state. It worsens my depression like you cannot believe. I end up living in a space asking, “Well what am I actually living for?”, “Why am I even here?”
I cannot enjoy simple things in life, for example, I like to take my son to Bounce, the indoor trampolines. I cannot join him on the trampolines because it hurts too much. There are so many things that I am unable to do with my family. It is so distressing and it really makes me question why I am here? I have attempted suicide 3 times already. I obviously haven’t succeeded although I almost did last year, and it is because of Fibromyalgia, depression and everything else I have to go through. I am sitting at home. I am on my own. My friends are at work, my partner is at work, and I am sitting at home with no company. I have got nothing to do. I can try and pick up a few hobbies here and there, but I mean, how much of that can you actually do? So what you end up doing for the majority of the time is spending time in bed, watching Netflix or whatever it is that I want to watch. 10 years of that gets very, very tiring.
Then there is the constant pain. I mean constant, never ending pain. I am never pain free. The strong painkillers that could help with the pain are not readily prescribed by the doctors as they will kill you in the long run. So you live with it, day in, day out, 24/7, 365 days a year. Try operating like that.
So, I really think that people should start thinking before they speak. We are not lucky to be on disability. I am lucky that I was insured for disability, otherwise I would not be able to work and I would not earn an income. I am not lucky to be on disability, in fact, I would give everything I have to be cured and be back at work, being productive and part of society. Right now, I am socially isolated. The only way I keep up to date with the going’s on is through social media and my partner. I find that I often have a lack of things to talk about because I am not experiencing life! I am staying at home and doing nothing.
I love to read. Unfortunately what happens as well is that my short term memory is very badly affected. So I basically have to insure that I read that book in one day because if I don’t, I will have forgotten what I have read the day before and so I have to reread it. Series and movies … a source of amusement to my family … but it is quite sad because I will have watched something and then I will not remember watching it. I can then watch it again and it is all brand new to me. It is not nice. It is scary.
I have a gym contract and I can only do low impact gym. I cannot do gym the way I would like to. If I go to gym and I overdo it, I suffer for the next 2 to 3 weeks as a result of it. That is the thing with Fibromyalgia, one day I will be feeling okay and am able to do quite a few things and then unfortunately for that, I will suffer for the next 2 to 3 weeks. I will end up with extreme muscle spasms, extreme pain and then I am bed ridden. So I have to weigh up the pros and cons. Do I do it and suffer or do I not do it?
I like to push myself as I really cannot accept that this is my life sentence but unfortunately it IS my life sentence, until they come up with a cure. It is considered a life long disorder with no cure. This is depressing. Incredibly depressing. Nobody wants to live like this.
So next time you come across somebody that is on disability, don’t ever say, “Oh you are so lucky”, because we are not lucky. All we want is to be working just like you. Earning an income, being productive, having a purpose and doing things that I want to do. Try to imagine yourself in my shoes. 10 years, put yourself in my shoes for 10 years! Not being able to work and sitting at home. Your statement just doesn’t make sense. I am not lucky at all. I suffer from a debilitating condition that every single one of us would give up in a heart beat and return to work. You need a purpose in life and without a purpose in life, what are you? What are you doing?
So yes, please, the point of this post, is to basically give you a bird’s eye view of what it is like to live at home on disability and how it really is not lucky at all, not even in the slightest! Watch your words next time. Watch what you say to people. Try and put yourself in other people’s shoes before making those statements. You might be surprised about what you learn.