Chronic Illness Realisations.

There is a struggle to accept new norm.
I am at war with my mind, every day.
I cannot accept the fact that I have an Invisible Illness, or that it cannot (currently) be managed.
I cannot accept the fact that this is my life now.
I feel like I am having the same nightmare night after night, and haven’t woken.
Accepting this, makes me feel helpless… as though I have reached the end of my story and the illness has won.

Doctors are only good when dealing with black and white.
If you have a concrete diagnosis, then Doctors are probably able to offer assistance.
But hand them months of tests and mystery results, and they have no idea how to treat you and become less compassionate to your situation.
It is frustrating for us, but isn’t their fault. Our condition probably gives them anxiety as their hands are tied when it comes to treating us.

Depression and Anxiety are inevitable.
We are coping with a lot during this time.
It is natural to develop Anxiety and Depression somewhere along the way.
We have a right to feel anxious and saddened.
Most of our lives have been turned upside down.
But it is important to remember that your Depression and Anxiety are not solely your illness.
They are underlying… symptoms even.
Your Chronic Illness led to the development of your Mental Illness.

The body is fragile.
I underestimated the ability of the body to crash, and to heal. I had a small cold, or viral infection, and I would push myself to work, to study, to go out.
Those days seem a mile away now.
My body is weak, and if it were to get a viral infection now I fear it would take weeks to recover.
I am not as strong as I thought.
All of the rest and vitamins in the world, would not rid me of this illness.
We are fragile creatures.

The world does not stop whilst we are ill.
We may feel as though we aren’t moving, but we are. We are growing older each day… but our motions aren’t changing.
We aren’t achieving, we aren’t earning.
It’s like having our feet cemented in concrete. I can move my arms, think, see, feel. But I can’t walk to the end of the block. I can’t break free from the hold. Meanwhile, people are continuously passing…

People have more time to pass judgement than to offer assistance.
I, as I’m sure you, recieve a lot of opinions from people in regards to my illness, and what I should be doing to “make a full recovery”.
I cannot comprehend how people have the time to voice their opinions, but cannot use thirty seconds of their time to giving us a phonecall, or sending us a thoughtful “how are you feeling?” message.
The way I see it is you either have time for me, or you don’t. If you have the time to tell me about the herbal remedies your great grandmother passed down to you, and that I should try to go to a Gym, do Yoga and eat more – then you have time to ask me how I am or pay me a visit.

Relationships are much harder to manage.
I don’t know how couples have time to be romantic or work on their relationship when one of them is chronically ill. Maybe I haven’t found the right person yet.
Chronic illness puts strain on relationships – romantic or non. I find myself being forced to only worry about myself, and that is a hard thing to do. I also find that the partner must focus more on being a financial aid and feels as though they wear the burden if being the main punching bag for my rollercoaster of emotions.
Partners feel neglected, unable to cope with the changes. They also may feel like the person they were with at the beginning, is now gone.
The partner has to be prepared to take on a little more of the weight, which is unfair.
The cycle spins – love, pressure, frustration, anger… until finally there is a natural drift between the both of you, and neither parties have the slightest energy to go on.

There is, though, a rare handful of people who have found that one who accepts them with their illness and battles alongside them. They have a plan that works. And to those who have found these special, supportive people – I am happy for you, and I’m indeed envious.

We have to be our own best friend.
I’m not going to lie, I hate my body… I hate myself since being ill. I am not happy with my appearance, my mindset, my struggle to heal.
I am angry.
But, who really understand this illness?
Who has to live through the symptoms?
Who knows you the best?

You.

We are alone most days… so, you might as well begin to like yourself at least, seeming as you are the only one who can fight this, and you will be spending a lot of time together.

We take too many things for granted.
I have a lot of time to think, and therefore I have a lot of regrets.
I have taken large and small things for granted.
If I get a second chance at good health, I know I will do things the right way. I will take care of my body during infections, I will travel, spend my time with those who truly love me, spend more time with my family, not stress as much and make the most of every second.
I will change, because I see how much I have lost now, and I feel soul-less.

How about you?
Have you had any different realisations since being ill?

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20 comments

  1. i think my marriage deteriorated due to my mental illness, and at that time, it was definitely not managed at all. also, within the first few years of my diagnosis, i lost most of my friends, and now have only a couple who also have other mental illnesses, so we can relate. forming an idea of how a new, accomodated future will look for me is still almost impossible after 15 yrs. i still don’t know what my new ‘normal’ should look like. i still compare now to then, and always come up short. and still teeter between liking myself, my body and loathing it. its easier to not even notice it.

    this was a really great post!

    Liked by 2 people

  2. Wonderful, insightful, depressing post. When I am in my deepest flares, it’s my mind that I am at war with — to care for myself, to remain optimistic, to find some greater meaning in everyday. And to keep searching for help.

    Liked by 1 person

  3. I used to be one of those people – judgmental, uncompassionate. I thought depression was “all in your attitude.” I judged my wife this way too for a long time.
    But the last years with my own depression have brought me to the realization, some things are better (actually they are much worse) experienced on your own. Why as people do we have such a hard time with things we don’t understand? As if we are God, “if I don’t understand, it must not be true.”

    Keep pushing on, love yourself. If I knew you I’d come by and chat for an hour. It would do us both some good.

    Liked by 1 person

  4. Please don’t hate yourself, I fell into that trap for many years.

    – When we are ill, physically or mentally, and alone for long periods of time, it can become all too easy for us to start judging ourselves, looking in the mirror, questioning ourselves unnecessarily, planting little pernicious seeds of doubt here and there.
    – It doesn’t lead anywhere one would want to be, – I know.

    Stay as strong and as positive as you can.

    Hugzz and empathy,
    – E

    *Great post as always, very powerful!

    Liked by 1 person

  5. My life has changed beyond recognition. Bipolar has aged me in so many ways. I’m alone. I rarely leave my house except for work. I have successfully alienated everyone in my life. I’m only 56 and pretty much done with life. I used to live the American dream; now only nightmares remain.

    Liked by 2 people

  6. My illness is a bit different, as it started from the moment I was born. So I have never known life without these issues. I honestly do not even know what “happiness” looks like. It is truly an alien concept to me. It’s funny because I used to genuinely fear that if I ever got the chance to be “happy” and free from my illness and my issues that I might not know how to act.

    I think, in my case, perhaps if by some miracle I ever manage to get past my dysphoria, abuse, PTSD, depression, anxiety and other issues, and experience “happiness”, I may need to write a post entitled ‘What I have Learned from Becoming Well’. LOL.

    Liked by 1 person

    1. Haha oh Zoe! That last part made me giggle. You will have to write that post! Being born with it though… Wouldn’t you accept it better? I am struggling to find acceptance because I had a norm before this that has now obviously changed… Maybe i wouldn’t feel it as much if I was born with it. I would have had to accepted it a lot earlier on..

      Liked by 1 person

  7. Hey beautiful, I’m just in the middle of a post about this! My realisations have been many, and most of them have been painful. The only upside is that you find out how your real friends are. My five year relationship didn’t survive my steroid induced weight-gain, either, which just goes to show that you never know who truly loves you until the chips are down. He just ignored my illness, before and after the cancer. I was still expected to do all the housework etc, even throughout chemo and other treatments. I don’t think he ever loved ME, only his perception of the physical me, his idea of me. B loves everything about me, and fell in love with me when I was already very ill and disabled. I am, as you say, extremely lucky to have unearthed such a rare man. BUT, if I could do it when I was 14st, disabled, sick, suicidal and still having to put up with my ex living under the same roof, think how much easier it could be for you!!! If I can do it, anyone can! My rare man isn’t as rare as I thought, there are loads of good men out there, you just have to know how to find them – with minimal effort, of course, because of our fatigue.

    You’re extremely gorgeous – way more than I ever was! There will be the perfect man out there for you somewhere, and maybe closer to home than you know. B and I quite independently were asking The Universe for our soul mates before we met, and then we found each other online. It turned out he had moved 12 minutes drive away from my house at almost exactly the same time as I had been ending my miserable relationship. In fact, I think he moved there the month before I told laughing boy to go – almost as if the universe had pointed him in the right direction, was putting him in place, ready for me to break up with shit-head,make a space for B and find him.

    We’d both been pleading with The Universe (not God, we neither of us do God, we do universal energy, ie, love, not organised religion, but that’s a purely personal thing, everyone is of course entitled to believe in whatever they feel to be true) to reveal our soul mates. Ok, so it could have been coincidence, but there were other coincidences, too. All I’m saying is that you have an awful lot more going for you than I did, and if you can make yourself available FOR THE RIGHT PERSON, that right person will appear.

    Ok, so your task this week is to check out some online dating sites and browse the available potential partners (I have no clue whether you’re into men or women, and I mean no offence by saying that :-)) Have a look, see how many possibilities there are out there. Then write your profile. Be honest, but not depressing. Say you hope for, and are working towards, a return to full health, but meantime this is how it is. (At least you won’t be reduced to having to say you’re 14st but used to be 8 1/2st, and hope to get back to that! Lol) You have tons of great photos of you that you can use. I can help you write a profile, if you like. I asked if there was anyone out there who was special enough to cope with me and my illness. I think I said, “Are you special enough to deal with all of this? I’m worth it – are you?” I still had to weed out some undesirables, and I gave B a VERY hard time until he’d proved himself. He saw me with a throw up migraine – he never flinched. He saw me at my worst – he never flinched. I told him the worst things about me I could think of – he just smiled. There’s more, but hey, this is your post, and I don’t want to hijack it!

    I sincerely hope things seem less bleak really soon. As long as your brain is still able to compose such great posts, you will always have your writing (or should that be the rest of the us will always have your writing!)

    Re people wanting to spend time with you as friends – I wish I lived down the road from you. I’d be over like a shot – you’re talented, bright, witty, emotionally truthful, terrific company – what’s not to love? You’re adorable! You’d be sick of the sight of me if I lived nearby! Lol. And you know I’m here whenever you need someone – you can always email me, as per my contact form on my About page.

    Much love and many heart-felt hugs, gorgeous girl,
    L. Xxxx

    Like

    1. Your partner sounds lovely! You are very lucky. What a beautiful story to have.

      Hahaha thank you. You are so sweet. I’ve made the decision to steer cleer from romance. I have to be my first priority. I need my health before I can date again. I don’t want the stress of finding someone… going through the dating steps. But maybe one day in the future!

      And thank you again – you are always so lovely. I’m happy we found each other xxx

      Liked by 1 person

  8. I’ve come to all the realisations you mentioned, but most of all I felt abandonned when one by one friends seemed to vanish,and that really hurt, doctors only have alloted minutes per patients, and it’s difficult to get anyone to really listen.

    The biggie is when I realised I was alone in this, and took me a long time to dig my way out of the pit, I did it, but that where you also need ongoing support, which just isn’t available.

    Liked by 1 person

  9. Like you, my life changed. Where we differ, of course, is I have a concrete diagnosis. I share many of your feelings – I do feel like I’m treated by those who know as someone who is fragile or delicate. I wish people would see that I’m still me.

    I always look forward to your posts, and as I’ve said before – if you ever want or need to chat/vent, I’m here!

    Liked by 1 person

  10. Unfortunately chronic illness is a single player game. Although we can have our own cheerleaders on the sidelines and referees (doctors) guiding us through it all. Some days we win, other days we lose. But we wouldn’t keep playing if there wasn’t a reason or ambition to do so.
    And despite it all, the sacrifices, the pain… We build the courage it takes to fight and win…
    I know soon you’ll find your “win”, because you are stronger than you know. And we’ll all be here on the sidelines with you along the way.

    Liked by 1 person

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