Nearly two months ago now I made the decision to stop working (again) so that I could solely focus on graded exercise therapy. In hindsight, I realise I went back to work too soon. My body struggled, and the harder I pushed, the harder it got. Every area of my life suffered because of that shift.
So I'm officially a lady of leisure once again.
I miss working, I really do, but in the last two months the number of bad days have decreased. I'm much more happier. I'm able to enjoy doing craft and a bit more writing. I can go out shopping or catch up with a friend without having to worry about coping with work too. I don't sit in a corner of my craft studio and cry, and I'm more positive.
This time I am taking a break until I feel well enough and ready to try again. It's such a relief to know that I have a job to go back to when my health improves. As hard as this is, and as much as I want to keep working right now, I know it's for the best. Even though I'm scared, I know that I've definitely made the right decision. It feels right. Although my doctors would argue otherwise.
I made the decision to go back to work because my doctors thought that it would be better for my health- it seemed to them that my life had no focus or direction. I felt very pressured to take their advice. Every visit they would encourage me to get out of the house and make something of my life. Returning to work for a few hours a week seemed the most sensible option but deep down I knew that physically, I wasn't ready to go back to work. But I went and tried anyway.
Why? Because I felt like I had to prove my pain. If I worked and suffered for it, I thought that my doctors would finally take notice. That maybe then they would finally "get" it and stop hassling me. That maybe then they would show a little more compassion and support.
I only caused myself more heartache.
At my last appointment a few months ago I expressed my unhappiness as a result of everything that I had to sacrifice just to work a few hours. I explained how much I was struggling. I discussed my suffering social life, only to have every word disregarded. Apparently struggling to work three hours a week just wasn't good enough, so my rheumatologist insisted that I look into studying something as well.
I've explained too many times that I'm not well enough to manage the demands of my course and that I don't want to study something that I'm not even interested in. There is only one course that I desperately want to do, and it's just not possible at the moment.
Regarding my social life it was suggested that I just keep in contact with friends through Facebook. Yep, because talking to your friends through a computer is so much more fun than going out for coffee and a face to face chat.
I've never walked out of an appointment feeling more ashamed, frustrated and hopeless.
Don't get me wrong, I am thankful for my doctors and all that they have done for me, but I am fed up with their lack of knowledge about CFS. Even Mr Fatigue Man suggested that I get back to work and my rheumatologist doesn't understand that the drugs I've been given for arthritis only exacerbate the CFS symptoms. The day that my doctors realise that running myself into the ground is not going to get me better will be a miracle.
They are so caught up in thinking the more activity I do, the better it will be for my health. I wish that they saw how much I had to sacrifice to work that shift, and how miserable and depressed it made me. Post exertional malaise got so bad at times that I just wanted to die. How is that good for my health? I wish they understood that with an illness like CFS and Fibromyalgia that I can't do everything and still be able to function. I'm not well enough to manage both work and a social life. I am not well enough yet to manage work and exercise. It's one or the other.
I made the decision to stop working for my health. This is what I wish my doctors would understand.
I'm not just bumming around home and doing a bit of baking and blogging here and there. I'm working really hard to get myself better. I'm taking the time out to focus on my recovery. I'm doing this so that I can get some control back and better manage the fatigue and pain levels.
I'm not staying at home because I'm lazy. I'm not staying at home for the heck of it. As much as you might think sitting outside in the glorious sunshine sipping smoothies is fun, it's not easy seeing your family leave for work and go about daily activities with ease. It's not fun hearing about all the things your friends are up to while you're left miles behind. It's not fun living life within four walls. It's not fun watching 6 years of your life pass you by. It's not fun hearing "Oh you're so lucky, I wish I could stay at home all day!".
It may seem like I'm having fun crafting and baking whenever I feel like it, but behind it all is depression and stress.
When am I going to get my life back? Heck, before I know it I'll be twenty five and I've got nothing to show for it. No tertiary education. No career. No boyfriend. What if I'm not much better next year? What the fudge am I going to do, where is my life going? And what do I tell people who ask what I do? Do I make up some bull crap or do I admit to being a stay at home daughter who doesn't go out that much? My doctors are right, I can't just keep staying at home. I need to do something, but what? I can't even cope with a three hour shift once a week at the moment, how am I going to manage anything else? It's near impossible to find a job that is suitable for these unpredictable symptoms and I don't have any qualifications. I feel like a no-hoper.
Living a life of leisure is tough when it's forced on you. It's humiliating having to tell people that you don't work or study when you don't look sick. It's awkward answering the "What do you do all day!?" question. When you tell people that you do a bit of baking and what not, people start asking questions. People start assuming that you're just a dole bludger.
It's lonely, and day time television becomes boring pretty quickly. My self esteem and confidence have taken a battering. I get grumpy and carry on about silly things because I'm frustrated that I can't do everything everyone else does without paying for it.
Living a life of leisure sure does have its advantages though. I have time to discover talents that would have otherwise lain dormant. I can stop and smell the roses. I'm learning that it takes a strong, resilient person to stay at home and not go completely insane. I'm learning things about myself that I would have never known had I been well and living productively. I'm learning that this time that I have is a blessing in disguise. I'm learning that no matter what others say and think, it's ok to go slow. It's important that I listen to my body.
Stopping work and living a life of leisure doesn't mean that I'm giving up. If you took the time to look a little deeper, you would know that I'm fighting harder than ever before. I want my life back. I want it back so badly, and I'm not going to give up on my life.
To some people it seems as though I'm just slacking off, but I'm actually working really hard. I'm trying my darn hardest. I think going back to try a shift at work for the fourth time is proof of that. I'm exercising, I have goals, I have dreams- just like everyone else.
I am taking a break to give myself the best chance of healing and recovering. CFS is not something that you just get over in a few months. It's going to take time, patience, belief and determination. It may take another two, five or ten years- and that's ok.
I am making the most out of all this time that I have. What I am doing to manage these illnesses is good enough, and from now on I am not going to let anyone else tell me otherwise, doctor or not.
I am doing the best that I can, and I'm doing the best for my health.
I am doing much, much more than just lazing around.