Wednesday, February 1, 2012

Sometimes you just need to have a good cry and eat chocolate



'Tis true that. (Source)


By the time I got to my Humira review appointment yesterday afternoon, I was already feeling fragile. I was exhausted and brain fatigued from driving all the way to the city outskirts (the furthest I have ever driven with chronic fatigue). I met Papa Bear at work and he drove me the rest of the way into the city to my appointment. Bless him!

I was already upset from my little morning meltdown. My clothes no longer seemed to fit me and for the first time in my life, I didn't like what I saw in the mirror. The weight I'd stacked on due to a long period on prednisolone finally hit me, along with the realisation that, given a few more weeks on this stuff, I'll need a whole new wardrobe.

Medication induced acne wasn't helping things either. I felt fat, disgusting and ugly. And the first thing that was brought up in my appointment was my medication induced weight. I wanted to cry. Yes, I know I have beefed out and I am aware that I am rockin' a nice fat moon face BUT I don't need it pointed out to me. On the contrary, I guess it did need to be noted, because I sure need to get off this medication before it does serious damage.

There is nothing quite as motivating when weaning yourself off a drug as a doctor telling you "I see you've got the prednisolone moon face happening".

And if my self esteem wasn't already suffering enough, I got quizzed on what I was currently doing with myself and what my plans were for this year.

Plans? Really?

I'm struggling to keep my shiz together just managing to get through each day. I'm struggling just to get simple things done at home because I am frustratingly fatigued. And I'm suppose to have great almighty plans?

I mentioned my success of exercising two times a week, and I stressed that I was struggling with the fatigue from it. I hesitantly admitted that I wasn't working my retail job because of brain fog, but to keep what little dignity I had left, I made it known that I was researching online childcare courses and making some inquiries, but that I was doubtful as placement is a real problem at this point in time.

The advice I received I thought was ridiculous but true.

I was told that if the course that I want to do doesn't work out- to just pick something and study it.

"Don't do nothing".

By the time I arrived home, I was a sobbing mess. My Rheumatologist is right. I can't just do nothing this year like I have for the last five years. But what am I to do with my life if I have this monster, chronic fatigue, punishing me for everything I do? How am I going to keep up with study when I find it hard to keep up with this blog and simple things like laundry.

And I don't want to study something that I don't even love. Studying just for the hell of it seems pretty silly to me. I don't want to settle for second or third best, but I'm afraid I'll have to.

I don't have many options. It's already February, so I guess it's time to start looking at what little options I do have. Returning to retail is top of the list right now, but standing for three hours scanning barcodes, and serving customers whilst battling brain fog, feeling faint and fatigued isn't my idea of fun, but I don't think I have much of a choice. The post pain and fatigue from whatever I end up doing isn't appealing either.

Being fragile to begin with, being told to stop doing nothing really got to me. I felt as though I wasn't doing a good enough job. I felt unworthy and worthless. I felt that the effort that I am putting in to try and get myself well isn't acceptable, and so, by the time I got home the water works began.

Cry me a river? I've cried a freakin' ocean.

The past twenty fours hours have seemed like an eternity. I have sobbed on the stairs, I have drowned my sorrows in the shower. I have consoled myself with a huge bowl of icecream and chocolate, and have cried some more. I have saturated my pillow. Heck, I have cried while writing this post. My eyes sting, they are sore and swollen and I can't help but think how unfair this all is.

I am trying to be positive, oh how I am trying, but right now I just need to have a good cry and eat some chocolate.

Right now I just need it to be OK for me to not be OK. I am sad, I don't like my life right now. I don't like feeling dreadfully drugged up. I hate feeling like shit every single day. I hate having stupid illnesses (namely chronic fatigue) that aren't properly understood. I hate feeling pressured and I hate being expected to function like everyone else. I hate going to bed at night exhausted and in pain. I hate waking up in the morning feeling stoned out of my mind. It isn't fair. Oh Lord, it isn't fair.

I hate the fact that driving and attending a twenty minute appointment has me struggling. I hate the fact that brain fog knows no bounds. How am I going to do something this year if I already feel beaten? If I already feel defeated? Throwing myself into something that I'll struggle to cope with or will have to sacrifice so much for is breaking my heart. It's tearing me apart.

I hate that I'm told that the fatigue will get better.... when? WHEN? They've been saying that for the last five years, and that's suppose to make me feel better? And in the meantime I'm just expected to live with it and get on with my life. I hate having debilitating fatigue that not even doctors understand.

Sometimes you just need to have a good cry and eat chocolate....










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8 comments:

Rusty Hoe said...

Okay I'll say it, it is 100% OK to not be OK at the moment. Sometimes you have to ride the wave of those feelings until they subside. Only then can you pick up the pieces and start again. I often say it takes far more courage to say it sucks rather than pretend it's all wonderful when it's not. If you keep stuffing it down it'll come out eventually. Usually at some tiny little thing at the most inopportune time and you'll wonder why that pair of shoes that are left out everyday suddenly seem like the most terrible thing in the world right this second and it all explodes(I may or may not be speaking from experience). I don't wish you these feelings and I sincerely hope they pass soon, but whatever you do don't beat yourself up for having feelings and thoughts, that if anyone else had you'd be understanding and there giving them a hug. You've been through a lot and still are going through a lot. Chronic illness isn't just about the physical challenges we face. It's the self doubt, the blows to our self image, our plans, our everything. Sometimes the psychological and emotional side of things can be the hardest part to deal with. And it's definitely one of the sides least addressed by the medical community. It will get better, maybe not right this second, but that's what they made chocolate for. (hugs)

Pixiecd said...

Ditto what Rusty Hoe said! It's OK to have those times when you're NOT OK! And honestly, you show tremendous courage for putting it out there for others to see. I described you as "chronically up-beat" and it's a thing of awseome beauty and strength to let others in on the fact that even the most positive people can be positively bummed about all this crap! We're NOT failures when we can't smile about it all the time...we're human! Hang in there and know that you'r not alone. (Hugs to you, woman!)

AMA said...

I agree with you totally! You need to give yourself a break. Cheers

phylor said...

I so understand how you are feeling, Emily Ruth, though for other reasons!
Sometimes, you just have to cry, to let all the pain, disappointment, frustration, altered dreams come pouring out.

I know you've tired all the time, but can you turn your incredible card making into a job? Sell your cards through hoby and craft stores? Craft fairs might be too much unless you had help, then you could sell your wonderful cupcakes too!
And, you could add special touches to your cards -- like ones in the winter, could come with some of that seed-infused paper. If you were selling in shops -- even smaller gift cards in high-end botiques, there wouldn't be the pressure of deadlines, or quanities. Just a though -- a way to use your talent, keep your mind and your spirit/soul occupied. I've seen special cards for sale at crafts stores, fancy gift stores, high-end botiques, etc. And, if you went the craft fair route,with help from friends, you could make cards of any size and degree of embellishment -- and those cupcakes -- even if you needed help with those.
Maybe this isn't a year of doing nothing -- it's a year of doing things you do well with a little help from your family and frieds.

No matter how hard I diet and exercise the 25+ pounds I gained this summer and the baby bump that goes with it won't disappear.
Intially caused by drugs, it has take on a life of it's own -- some of the weight gain has been to the face,but my hips and bottom are the same. Some days I have a 42 inch waist and nothing big neough to wear out of the house.I'm looking for a purpose too, a way to either get me out of the house or keep me in creativitely.
Good luck -- and cry as long as you need to -- sometimes it's just SO necessart!

Anonymous said...

Hi! I've been following your blog for about 7 months now. I've had Chronic Fatigue, Fibromyalgia, Bursitis in my hips now for about 18-19 years now. I was diagnosed finally about 17 years ago. I've been told all the same things...it will get better, do something with your life etc. I just want you to know that others may never understand what is like to be in the brain fog, depresssed, and in pain every day of your life. I still get it after all these years. The one thing you have to remember is that this is all real, you are not faking it. "You look fine". Regardless of what others think. It's what you know to be your truth that matters. Do what you can, be who you are, and find laughter every day. The weight gain for me has now brought on Diabetes. Since I found card making, I have something I can be proud of every day. I even get compliments. I was an executive and legal assistant, office manager etc. for years. What was the worst for me? I lost my vocabulary. I would cry so much because I couldn't say what I meant. I was told by Doctors and the Medical community that I was hysterical, overly sensitive, that I was faking, even from my own Mother. I have said some of the most ridiculous things. I still do it to this day. Try to find the comedy of these illnesses. It's amazing what a bit of laughter can do to make your day better. I still have my low days, weeks and months, but I have to take my mind off of it. Be kind to yourself, repeat positive affirmations and know that you are not alone. I have a tendency to isolate myself, so I have to remind myself to reach out. That is what I am doing now. It's hard sometimes, cuz I don't want people to think that this is the only thing I talk about. It's depressing. So smile today, tell yourself you love you!
Sincerely, Kathleen Glendale, Arizona

abcsofra said...

Oh grrrrrrrr and more grrrrrrrr. I just want to take your doc and slap them side of their head. What the (**&^%^%D&S is wrong with that doc? Your not making this crap up and if you are still feeling so bad well guess what....your doc has failed and isn't doing a good job for you! And that is the bottom line here. How dare that doc dump on you like that. Your exhaustion and fatigue is real. These doctors anger me sooo much. Like who in their right mind wants all this stuff? Not me. I would love to give it all away. And your doc is the first person I want to give it to :-( Grrrrrr....and grrrrr again. If you are going to use up what little energy you do have...go after a passion. Something you love and cheerish. Something that will uplift you when you do it. I like the card making business as a start. Retail might be a tough one and tends to require hours that they need not what your health might need. But whatever you decide...please, please know that there are lots of us out there that believe you because we get it! We know because either we have been there or are currently there ourselves. (((HUGS)))

Spencer said...

I agree. Chocolate makes everything better!

Miss Chronically Creative said...

Thank you all so much for your encouraging comments, it really means a lot to me to know that I am not alone in feeling like this.
Your support is very appreciated. Mentally I am feeling a bit better and am a bit more postive- I've been researching more courses and I've found one that I would like to do that seems somewhat realistic, so things are slowly looking up! ♥

@Rusty Hoe- I couldn't agree with you more. And I know that it will get better, it has to! Thank you for reminding me of this. x

@pixiecd- Thank you, your kind words have put a smile on my face x

@phylor- I know you do! Your blog is such an engouragement to me. Cardmaking isn't a career path in my doctors eyes and it's very hard to sell cards here- I'd love to have mine in gift shops, but unfortunately stores just stick with major suppliers. I could sell them at markets, which is what I am slowly aiming for, but it's very competitive. The market I want to sell at has cardmakers selling amazing cards for $3 each! I don't know how they do it, pricing mine under $3 would just be silly, it costs way more than $3for the materials. I have looked into selling my baked goods but to sell at a market there are strict laws- I have to cook in a commercial kitchen and at this point in time I don't have access to one, so that dream is out the window. I've looked into selling baked goods from home but apparently you have to install automatic taps to have your kitchen registered- and I can't do that in my parents home, so that dream will have to be put on hold for now. I think the best thing at this stage is to have a try at selling my cards through facebook- that is something I'd really like to work towards this year.

Ugh yeah I can relate to that! All the prednisolne weight has gone on my face and hips. I'm really self conscious of it now. Certainly can't wait until I'm off the stuff!

@Kathleen- Hi! I have a lot of trouble trying to get people and unfortunately doctors, to understand how difficult and debilitating it can be at times to live with fatigue and brain fog. Somedays it's just so intense. I am SO glad that there are people out there who "get" it and do understand. It's so real and incredibly frustrating. I'm sorry to hear what you've gone through, it's heartbreaking. It makes me angry when people just palm our illnesses off as stress, depression, attention seeking or hysteria. And yes, laughing is the best! Thank you for your lovely comment, all the best. x

@abcsofra- Hahah! Well it's a bit tricky in my situation because I also have chronic fatigue and my rheumy doesn't really understand how debilitating it is for me somedays-even though I try and explain it time and time again. I'm making another appointent with my fatigue specialist to discuss these issues and maybe they can ring her and explain. I get really upset when they don't understand how much I am trying. I mean for goodness sakes I am exercising twice a week-I couldn't do that a year ago! Doctors definitely need to have more tact, that's for sure. I shouldn't have to walk out of an appointment feeling more horrible than when I came in- but I guess she's just as frustrated as I am and wants me to try and pursue some kind of career. I would love to give it all away too, I wouldn't wish this on anyone, but it would be great if doctors could know exactly how it feels. I'm trying to find something that I can manage that won't suck up all my energy, and will still allow me to do some of the things I love. Things will work out, and something will come up, I just know it :-)

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