Thursday, November 29, 2012

Lady Of Leisure

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.
 
 

10 comments:

Jamie said...

Emily,
I would consider getting a new doctor. I had an ENT here who told me I was too much of a challenge for him and made me feel like I wasn't worth fighting for. It pissed me off, so I went interviewing for a new one. Now I have an amazing doctor who listens to me. Something I have learned is each persons body is different what works for me doesn't necessarily mean it is going to work for you.
You are worth fighting for. Fight on!

ArianeK said...

Hi Emily - newish reader here, also quit my job in April and decided to take some time off "a sabbatical" I like to call it, to work on stabilizing my health.

I've got IBS, Fibromyalgia, and a ton of other issues. I was working 20-30 hrs/week before - 20 was just manageable, 30 had me barely getting by. I was living on adrenaline and actually now have tested for adrenal fatigue, surely thanks to how hard I had to push myself. I've been feeling soooo much less stressed since leaving which has helped me to gain some much needed weight, and stabilize some issues. But my fatigue hasn't really improved, and if anything has gotten worse.

I went to a rheumatologist a few weeks ago, and he encouraged more exercise, but when I followed up with my doctor, and talked to her about how exercise affects me, she really cautioned about pushing for endurance or cardio activities (which can lead me to crash extremely badly). She said do whatever doesn't make you crash (like yoga or splashing around the pool a bit), and don't try and walk every day if it really wipes me out.

Basically she was saying listen to my body, and not to anyone else who doesn't really listen to what I'm saying about my body (ie. the rheumatologist).

I did a bunch of research into GET, and even though it's promoted on a lot of sites, both the little blurb on Wikipedia, and this ME site talked about how many if not most people find it actually makes their health deteriorate, not improve.

Interesting stuff. Keen to keep hearing about your experiences.

Both Wikipedia and this ME site say that a ton of people feel worse doing GET.

http://en.wikipedia.org/wiki/Graded_exercise_therapy

http://www.actionforme.org.uk/get-informed/publications/interaction-magazine/read-selected-ia-articles/treatments/graded-activity-exercise/get-gat-and-exercise-on-prescription-survey-results.htm

Best,
A fellow lady of leisure

Just me, Leah said...

Another lady of leisure here. I have Fibromyalgia, CFS, IBS, bladder pain, ovarian cysts, asthma, an underactive thyroid and a few other not-so-joyful conditions including depression and anxiety.

Your doctor sounds like hard work. I wish you better health, lots of rest and I hope your doc pulls his head out of his nether regions and stops pushing you into things which are harmful to you.

Krissy said...

*stalking your blog* :P

I totally get the reason for you taking time out from work. You dont need to justify yourself to anyone.. you know you better than anyone else and if taking the time to rest and recover is what you need, then do it! :)

I sometimes am jealous of those who get to stay at home all day and live a life of leisure, but that was what I did after finishing uni...working 1 day a week and sitting at home the rest of the time due to lack of funds and watching kerry anne every day was not fun at all! haha. But of course your leisure time at home is for different reasons...but I hear ya :)

x

Miss Chronically Creative said...

Hey Jamie! Yes, I am mighty tempted to, although it is a huge pain to swap- the medication and paperwork makes things messy and I don't really want to deal with that right now. I did see another rheumatologist a few years ago while my one was away and they were even worse! They told me that arthritis pain only accounted for 5% of my pain(ha!),so why has my rheumatologist put me on so much medication then douchebag.

Had I kept seeing that one I would never have gotten the stronger drugs that I needed to function. So now I fear that by swapping, I'll end up with someone worse.

As for my fatigue specialist, they are apparently top in their field and there is no one else for me to see. I feel so stuck. Surely there must be a better doctor out there who does understand the fatigue and why I can't manage working at the moment.

I'll see how things go next year. I do have a really good GP (at least!), so I'm thinking I'll talk all these isues through with them.

So glad that you have found a great doctor. It gives me hope.

Miss Chronically Creative said...

@ArianeK- Hello! Thanks so much for reading.

Wow that's a lot to manage with fatigue and pain issues, it's sure tough, hey! Sorry to hear that your fatigue hasn't improved, I do understand how incredibly frustrating that is. Since stopping work my fatigue has improved, but not to my expectations.

Another silly rheumatologist. Ugh. Yep, I'd take your doctors advice and stick to low impact. Yoga and swimming is definitely the way to go if that's what suits you.

You've gotta do what works for you and everyone is different. This is half the problem with GET I think. It needs to be tailored to your fatigue and pain issues.

I've researched GET too and the information I found did make me wary and skeptical. I really worried that it would make me worse and I was hesitant to try it.

My fatigue specialist recommended a really great program which has helped his patients so I finally thought there's no harm in trying- I could just stop if I got worse.

At first I decided on trying an EP that didn't come recommended because they were closer to home. They were nowhere near experienced enough with CFS, and I did feel worse because the exercise wasn't right for me.

Now that I'm seeing the EP my specialist recommends I'm achieving my exercise goals without making my symptoms worse. I didn't think that would ever be possible.

The program I'm doing isn't just about exercise, it's about modifying daily activities (making exercise more manageable), listening to my body, not overdoing it and resting even when I don't feel I need to. I used to think that exercise made me worse but my EP is teaching me that what I'm doing in my daily activities is contributing to an increase in symptoms.

Exercise should never make you feel worse. If you're crashing for days, you're doing too much. Exercise will make you feel worse if it isn't tailored to your needs. I think that's half the problem with GET- some EP's are pushing patients past their limits.

My EP has also given me some great coping stratigies that really make sense. I wish everyone had access to her knowledge.

The controversy surrounding GET is really interesting and confusing. No doubt there needs to be more research and funding invested in this illness.

It pisses me off that people think GET is the answer. Exercise is not a cure. We didn't become ill due to a lack of inactivity. But it is a helpful tool in managaing the illness if done properly. I am proof of that.

Don't take the research too seriously. There is so much hope for better days.

It sounds like you're on the right track and doing a great job. Wishing you all the best x



Miss Chronically Creative said...

Thanks for your comment, Leah. I do hope your doctors are much more understanding than mine. Hopefully these issues will get sorted soon, I'm thinking I might get my exercise physiologist to explain to them why it is that I can't work right now. I have a plan!

One day soon, I'll be raving about how wonderful they are.

Miss Chronically Creative said...

And I've been stalking yours Krissy. Ha!

Exactly. I am done with explaining to people who just don't get it.

I know what you mean. Everyone needs some time off at home every now and then to just relax, but it pisses me off that people think that being sick is fun and that it would be great to have my life.

Staying at home for six years because I don't have a choice, watching my life go down the drain isn't fun.

phylor said...

I just can't get any of my comments to "stick" tonight. And, when I try to reccreate them (forensic blogging), I can't quite remember it all.

Sharing your ups and downs, your creativity, your passion for "craftiness", your thoughts and feeling by maintaining your blog is something more than just being a "lady of leisure."

Your poetry/prose about the disappointments and disillusionment provide so many people with windows into their world.

You acheive so much with your words, crafts, illustrations, thoughtful responses/comments.

It maynot seem like it, but you are touching more lives in a positive way than you realize.

Please keep sharing your world with us.

Miss Chronically Creative said...

Thank you so much for your kind words, they have really encouraged me. Same could be said about you, so right back at ya! ♥

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