"Where there is creativity, there is hope." ~ Donna Karan

Facing Reality

by - Wednesday, March 02, 2011

I just feel like I'm on a constant merry-go-round lately and I've had enough. I'm tired of the confusion, I'm tired of all the unanswered questions, tired of being exhausted, tired of the pain and I'm tired of not knowing what to do to help myself. I hate the feeling of being out of control and I yearn for my old life, the life of abundant health and happiness. I loved life and was happy about the way things were turning out before illness struck and  now I would do anything to have that life back. I would give anything just to be healthy again, to feel like a well functioning human being instead of a drugged up to the eyeball zombie. Fatigued doesn't even come close to describing how I feel. This stupidly named chronic fatigue syndrome is slowly but surely sucking the life right out of me and turning everything that I love into smash.

I am sick and tired of hearing "you're just lacking motivation" and "if only you would get out more". It's demoralising to live in pain everyday and to suffer with fatigue that even doctors fail to recognise as a severe problem and often after many appointments I leave with flowing tears of pure frustration. How can I explain it? How do I convince someone that I am disabled by a crippling, crushing, life sucking, unrelenting fatigue when I look like I'm ready to take on the world? How do I explain that I simply cannot physically do something no matter how much willpower consumes my mind?

(image via weheartit.com)

Over the years I have learnt to be content with what cards I have been dealt to a certain degree, but there are times that I really struggle with the fact that I'm chronically ill and that there is no magic pill. And even though I have lived with chronic pain and fatigue for five years now, there are some days when the enormous monster of reality smacks me hard in the face and knocks me to the ground, dragging me into the pits of depression where I am suffocated by a blanket of heaviness. The reality that there is no way out yet, the reality that there are no answers, the cold reality that chronic fatigue and pain are a cruelly painstaking, life changing, and extreme emotionally challenging mountain climb.

How can I be okay with this reality? This is not okay. Overwhelming fatigue that takes complete control of your whole being- both physically and mentally that you cannot comprehend how you will survive another day is not okay. Being so bogged down with tiredness that tears apart your life is not okay. Being tired from breathing, just breathing, is not okay. Waking up every morning weary and fatigue frazzled is not okay. What part of this screams okay? This is no way to live. This is not okay. I am not okay. Yet, somehow this has to be okay, somehow everything will be okay.

After my appointment with both my rheumatologist and my doctor last week I feel even more miserable and frustrated than ever before. The latest prescribed treatment for chronic fatigue? Exercise. Yes, the "E" word has been contributing to my recent bout of doubt and depression and any chronic fatigue sufferer would understand exactly why. When I was at my best in terms of dealing with my health issues, I was able to work between 3-4 short shifts a week and exercise up to 20-30 minutes three times per week- that was as good as my life got with chronic fatigue and even then I was struggling.

(image via weheartit.com)

Gradually over time the fatigue worsened and I dropped down to working two shifts a week, then to one and then to not working at all. Along with that came a decrease in exercise and activity due to the overwhelming fatigue and for the past year, I've been mostly housebound and haven't been working for about ten months now. I burnt out. Maybe all that was too much for me to take on, I don't know, but now that I've been stuck in a 'I will one day recover' rut, the issue of exercise has been raised.

My rheumatologist has suggested that I try a graded exercise (gradually building up endurance) program and this has me feeling quite anxious. I'm scared that getting back into exercise will worsen the CFS and set recovery back even more. Over doing it is what got me to this low point in the first place, and if being inactive didn't cause my slothful state, how is it going to get me out of it?

I have so many questions swimming in my head. Questions that I don't even know how to ask my doctors and I am in quite a state of complete confusion and contradiction. When I first complained that my fatigue was becoming more unbearable, my doctor told me to stop work because I'd just run myself into a wall. Well how has stopping work benefited me anyway? All it's done is made me inactive. I've questioned my rheumatologist multiple times about the issue of exercise and she told me that if I was struggling to do stretches then I shouldn't push it, and now she is telling me I should exercise! The thought of returning to work and exercise makes me cringe, and this is something I need to overcome. If I'm going to work towards getting any better I have to stop thinking about how hard it's going to be and believe that I can do it. Easier said than done though because I can't stop thinking back to the times when I was working and I'd come home in tears after most shifts because I was beyond buggered.

The thing that I hate most about CFS is not the cruelty of the fatigue but the feeling of being completely alone and misunderstood. Everyone in the medical field has a different opinion about how to go about dealing with it and treating it and I don't even know what to take as fact or fiction. I don't know what to believe anymore. Back when I was seeing a naturopath desperate for help, I was working my three short shifts a week when she suggested that I even quit work and rest because she saw how much it was affecting me physically. Now contemplating a return, once I've somehow built up my energy, I don't know how I'm going to survive it.

I know I need to stop thinking about the negatives and what could happen but when you are in pain you try to avoid putting yourself in situations that will cause a flare-up. I have tried to ignore my illness, and every time I go out and have a good time I pay the high price of pain for it. I am constantly making sacrifices. When I was working, I sacrificed my social life and everything else because I was too tired from work to do otherwise. I couldn't drive because I was exhausted, and so I sacrificed getting my licence to be able to keep my job.

(image via weheartit.com)

The whole reason I think I'm so upset is because the fact that trying to get back to work may mean that I give up going out with friends once a week, being able to get to the shops every few weeks and generally having some sort or salvageable life for the sake of my health. I hate this, I really hate this and as much as I try, I can't be positive Polly all the time. I am human after all. Every time I get my hopes up that some treatment or some new drug is going to give me my life back, and every time I am let down and am disheartened by disappointment. The fact graded exercise has enabled people to fully recover from fatigue has got me guarded. Exercise is not a cure, but my rheumatologist (and my parents!) are trying to get me to see that it may help improve my condition so that I may gain at least some sort of life.

Once again, I'm jumping back on the exercise bandwagon, this time with a different approach- balance. I don't want to just survive with chronic illness, I want to thrive. Being able to head back to work would be wonderful but at the moment I'm just focusing on taking it one day at a time. Even if I'm active for just three days a week and crash the rest of the week, I would be happy. I figure trying giving graded exercise a shot may be worth it in the long run. It won't kill me and after all, I've got nothing to lose- it can't get any worse than this, it just can't.

Being bound by chronic pain and fatigue for so long really messes with your head, I've come to accept this unwanted way of living as a new reality but I hate it. Right now I don't know what reality I'm facing in regards to the future, and what is realistic. I wholeheartedly believe that one day I will get better, that one day I will get my life back but sometimes I struggle to see my life without the chains of chronic pain and fatigue. I don't even remember what it's like to not feel tired, to wake up in the morning refreshed. I'm trying to imagine life without fatigue and without limits. I know that just because remission isn't reality now, doesn't mean it isn't possible in the future. Without a doubt I know that there a life beyond CFS and I chose to live in the reality of that hope.


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