Thursday, May 3, 2012

A whole lot of thoughts and feelings that probably don't make much sense, but needed to be expressed

I'm not quite sure that the title makes sense, let alone this post. Whatever. Chronic illness doesn't make sense.
 
I've said before that I can't be a happy chappy, positive polly all the time. While I do try, there are times when chronic illness brings me to my knees once again and I'm left feeling broken. Unmendable. There are times when everything suddenly becomes all too much to bare. Despite my best efforts, I find myself trekking through this familiar terrain once more.
 
Along with the pain, the fatigue, loneliness, isolation, misunderstanding, the misconceptions and the frustrations that comes with invisible chronic illness, you also have to ride an emotional roller coaster- it comes with the territory. This week, my mental and emotional state has suffered something shocking. It is just another one of those gigantic and overwhelming waves that I need to ride out. And I'm doing that the best way I know how- blogging.
 
As a chronic illness blogger, I need to blog with honesty and integrity. I need to blog about not only the good but the bad and the downright ugly. I'd be doing myself (and others) a great disservice if I didn't. Most days, I'm not honest about how I'm feeling. To be frank, I don't know how to be. I'm constantly hiding behind a shy smile and the standard response of I'm good, thank you.
 
Keeping up a life is peachy appearance and lying is exhausting, but what choice do I have when people keep telling me how great I look? People can't possibly understand the profound pain, the unrelenting fatigue and the daily battle with brain fog because I look too damn good. On the contrary, I can't be constantly telling people how terrible I feel either.
 
So today, I am telling it how it is with hardcore honesty.
 
I am not happy with the place I'm at right now. I am not ok with how my life is panning out. I don't enjoy my life right now. I hate going to bed wondering how I'm going to get up and deal with the same crap the next day. I hate waking up in pain, feeling like I've been hit by a hurricane. I hate feeling drugged every single damn day. I hate feeling frustrated. I hate not knowing what to do to get myself off this merry-go-round.
 
I hate dealing with doctors who don't understand. I attempt to be assertive and be my own advocate, but I'm tired of explaining and justifying myself to people who will never get it. I'm tired of trying to explain how I feel, when I don't even understand it myself. I'm tired of trying new things that don't seem to significantly help symptoms. I'm exhausted.
 
It is taking every ounce of energy I have, to keep going, to not give in, to not give up. It's taking every ounce of energy I have to stay positive, to stay hopeful, to drag myself out of bed each morning, to keep soldiering on when all I want to do is curl up in a ball and sleep.
 
This week I've made some pretty big decisions, as a result of my appointment with Mr Fatigue Man the other day. Decisions, that are incredibly overwhelming when dealing with fatigue and brain fog. I've finally decided to return to work, which is the one thing all my doctors agree on. I agree too, but I'm anxious about it. I want to go back to work, I really do, but I don't know how I'll cope.
 
I do need to have a focus for the week, and I do need an outlet outside of home, even if it is only for three hours a week but I don't want to feel worse than what I already do. It was only yesterday that I ventured to the shops to grab some groceries, and I came out in tears because I just felt horrible- and I only went to two shops. How am I going to feel after three hours on my feet, having to serve customers and concentrate on not making mistakes?
 
As I drove myself home, I remembered back to a couple of years ago when I would finish work, and drive home on my L-plates because I had to clock up my hours, howling because work was just too much for my weary body. I don't want to feel like that again.
 
In order to work this one measly shift a week, and keep up with it, I know I'm going to have to make sacrifices. Scarifies I don't want to make. I don't want to give up on some of the dreams I wanted to work towards this year and I still want some energy to craft. I don't want to sacrifice spending time with family on the weekend because I need to reserve energy for work. I don't want to stop my short shopping trips. I don't want to discard the things that make life worth living for me right now.
 
But I know I have to, because staying at home hasn't gotten me anywhere either. I have to for my mental state and emotional well being too. I'm still fatigued and in pain if I don't work, so I may as well try to earn some dough.
 
I've been advised to increase my exercise too. Apparently the thirty minute yoga and ten minute aerobic workouts I do on alternate days isn't quite good enough. So today, I knocked it up to forty minutes. I've been increasing my activity gradually since last August, and I'm only just coping. I'm not really able to manage too much else in the day yet. Mr Fatigue Man also wants me to see a more experienced exercise physiologist, as he wasn't too impressed with the one I saw last year (I thought they were fine, just a little out of their depth).
 
I don't want to do any more exercise. I feel I'm pushed to my limits already. And how the heck am I going to cope with both work and exercise? Working alone to me IS exercise. But I guess making an appointment with this exercise physiologist and talking about these things can't hurt though. It could be a good thing.
 
On top of all this, I've opted to try a new drug- Dexamphetamine. It's a stimulant that's suppose to wake up my brain and help with brain fog. I was informed that besides insomnia and the unlikely possibility that it could send me stark raving mad, that there are no other side effects. I was and still am anxious about giving it ago, because I've experienced those side effects before, and I never want to go back there. It's a dark and scary place.
 
But I have to give it a good go, because it could help me. And right now, I need all the help I can get. I had my first dose this morning, and so far it hasn't assisted my alertness. All it seems to have done is made me feel more drugged and whacked. Within thirty minutes of taking it, I went for a walk down strange street. It made me feel dizzy, too. No other side effects my arse! I better sleep tonight, I tell you what.
 
I guess I'm just caught in a whirlwind right now. I've been bombarded by so many feelings that I don't even know what to feel. Does that even make sense? I think I'm just terrified. There, I said it. I'm scared. I'm scared because I don't know who I am anymore. I'm scared because I don't know what I really want in life anymore, and I don't like the direction I'm going in. I'm scared because I don't want to do this anymore, but I have to because I don't have a choice. I'm scared because some days I don't feel very supported and encouraged. I'm scared because some days I feel all alone even though I am surrounded by people.
 
To be honest, some days I can't help thinking how unfair this all is. It's unfair that I have to somehow try and live a somewhat normal life and function like everyone else. It's unfair that I have to ache every single minute of every day. It's unfair that healthy people on Facebook complain about going to work, when I would give anything to work without having to sacrifice everything. It's unfair that I have to deal with stupid illnesses that people know very little and have varying opinions about. It's unfair that I am drugged up to my eye balls and are expected to carry on with ease.
 
I know that my doctors are just as fed up and frustrated as I am. I know that they just want a better life for me. I am trying. My gosh am I trying. But sometimes it just gets a bit too much and I need a break before I can pick myself back up and carry on again. I know that I am not alone in this, and I know that somehow I will cope. Everything will be alright. I can do this, and I will. I am capable. I just need to let my faith be bigger than my fears.
 
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8 comments:

Jamie said...

Thank you for being honest. That is a difficult thing to do when it is the norm to say I'm great, but secretly want to pull your hair out. I to suffer from a chronic illness and I do understand being tired too. I enjoy your blog a lot and I'm glad that you are creative and are willing to share your ups and downs. :)

Anonymous said...

Oh my goodness how did you get inside my head and write down everything I have been thinking for the last two weeks! Thank you!
Amanda

S.G said...

You certainly aren't alone. Thanks for writing this.
I have Herditary Neuropathy with liability to Pressure Palsies and experience the same issues with constant pain and the invisible nature of it. The only way i'm currently coping is by focussing on my blog random-things.co.uk
I hope the new meds work out for you. People don't understand how difficult it can be just trying to get some relief from chronic ilness.
Good luck to you and thanks again!

Alanna said...

Oh hunni bun :( These heartful and honest posts are so good for all of us, and especially you, but they do make me sad! I hate hearing you're having truobles and are in pain etc etc etc. Hope the new drug fixes up the brain fog and doesn't come with a complete handful of side effects. Thinking of you always!

Miss Chronically Creative said...

Thank you all so much for your lovely and supportive comments. It sure helps to know that I'm not alone in what I am feeling. Much love to you all xx

Tamara Epps said...

Hugs. I wish I had something to say to help you but I am just as scared as you about the way my life is panning out. I totally understand what you mean about using all your energy to just keep going each day as that's what it's like for me at the moment. I can only hope that it will get better for you, for everyone living with any kind of chronic disability and for myself.

Miss Chronically Creative said...

Tamara, what you've said is helpful, and I'm so glad there are people who understand what it's like to have your life plans and dreams taken away by such a stupid illness. I'm right here with you hun x

Aimee Myles said...

Ugh, I so agree. This is a great post, and it is nice to have something to relate to so thank you. Sometimes living with a chronic illness is just getting by, but not actually living. Those times are the absolute worst! What a roller coaster chronic illness is. I just recently started blogging to help me cope with the harder times. It helps for sure. If you would like to check it out: http://fibromyalgiafiles.blogspot.com

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