Have you desensitised your own chronic illness?



Something strange happened last week. It has played upon my mind since and even made me feel sad.

I had to list and describe my illness during a medical consultation.
As crazy as this may seem I actually shocked myself.

I now believe I have spent so long focusing on happy that I have neglected being ill!!

In a quest for happiness do we become desensitised to illness and its impact on daily living? 



Daily chronic pain may be normal to you but it is not normal. 

Balancing every aspect of your life so you do not flare is not normal.

Wearing a pad daily is not a sign of a healthy bladder it is sugar coating incontinence.

Walking with a stick does not mean you have cured the unsteadiness, it just means you walk with help. 

Having to sit daily with a hot water bottle on your back so you can watch TV in comfort is not a sign of a pain-free lower back. 

It is superb to be able to smile through it all, (this is definitely my super power.) But this week made me realise I need a list of everything in detail as illness has simply become natural to me. 

During this appointment, I was asked about my migraines, how they affect me, duration and symptoms. Migraine has been part of my life for twenty-eight years, this is almost a marriage! For me it is normal to have crippling head pain so I often forget,  it is as natural to me as breathing.

"Were you healthy prior to Fibromyalgia?" the Nurse asks. Instinctively I reply yes. Then the reality alarm bells go off within my mind. Was I really healthy with panic attacks and depression since my teenage years. Was endometriosis that stole part of my life really healthy? It was severe enough to require a hysterectomy in my thirties yet I opted to forget this pain as this pain was with me all of my adult life.

The pain was such a huge part of my life that I made it normal for me.

"Tell me about your bladder problems" I was asked. "You have not mentioned it yet the doctor lists it here also chronic IBS."





Why is it acceptable to think this is normal?
Is the price of being happy and chronically ill to sugar coated every symptom, illness, disability?

My March mission is to start a list, of my illness, symptoms, coping mechanisms, medications. This list should include a full detailed past medical history. When you accept illness as a part of life you can become desensitised to it. You may miss out on gaining valuable help and support simply because you have a super coping mechanism in place.

Maybe you need to make this your March mission also?

 Love and gentle hugs to you all

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Also as admin for the group  WOMEN WITH FIBROMYALGIA

Comments

  1. I shocked myself when I recently input my health issues on my phone in case of emergencies. The list of fibro comorbid & other issues in black and white was sobering! We need to sugar coat it in order to have any quality of life, yet at the same time we need to honour the reality. It's another balancing act in our day to day lives. When I look at it with open eyes as an observer! I'm filled with so much compassion for myself for how strong I truly am.

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    1. Hello cips, thanks for commenting. It is such a shock and how beautiful that you found a wonderful positive from it. Yes, you are strong and amazing to get through it daily. Huge hugs Ness xx

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  2. Hello there, thank you for commenting. It is such a shock isn't it. That app on a iPhone is great such a simple thing that may change peoples care if needed in emergencies. I adore your wording "We need to sugar coat it in order to have any quality of life, yet at the same time we need to honour the reality" so true! Love and hugs Ness xxx

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    1. Thanks for the hugs Ness. Reading your post again I want to comment on the detailed list you are creating. I've thought of doing the same. I'd have something to show my doctor and other medical professionals of what I deal with daily, and to see if what I am doing (massage, physio, acupuncture, supplements, meds, etc.) is actually making a difference. I'd also restart my food diary. BUT I resist because I wonder if I could keep it up due to the roller coaster of pain and fatigue and Fibro fog. It seems like it might be a lot of work. Hugs back, Lianne (from Canada btw)

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  3. I do this all the time! I didn't realize it until I filled out paperwork at the doctors office and didn't include most of my medical conditions. Which in hindsight was a bad idea, so I did fix it. For some reason I was thinking that my medical conditions weren't that big of a deal, they were just normal things. Except they're not!

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    1. Hi,thanks for commenting. So glad it is not just me! Shocking isn't it that we now just accept it as normal. Glad you rectified it at the doctors as that is not good for your care. Loving your blog by the way... Love Ness xxx

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  4. I am certain that I would like to focus less on my illness. I am trying to return to work and i have been feeling poorly, dizzy ,sob fatigue etc.I'm feeling weak and somewhat humiliated at a meltdown this week-venting to my family.I realize that I'm angry at my doctors and a nurse who was so rude to me ,but further i have been facing debilitating illness with shortness of breathe and pulmonary hypertension.The energy it takes to cope with illness is overwhelming lately. that's all from dora doom for now.

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    1. Oh Anne, this deserves a hug and a kiss! I hope you are feeling less poorly and dizzy. Doctors and Nurses can be less than compassionate at times. They are only human I guess and like with any profession there are super ones and less than super ones.
      I think having a good rant and getting it all out makes you feel heard (if only by yourself) I even love a good cry. I always feel recharged and ready to start again. Hugs Ness xx

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  5. I'm also guilty of this. I forget so many things in Dr appointments and then realise later that it isn't normal. Some things I've had all my life and didn't even realise that they weren't normal until in my late 20s. I'm seeing my daughter doing it as well. Thing is, I don't want to admit how things are to anyone because that would mean admitting it to myself as well. I don't want to feel any more different than I already do. I think many of us feel this way, especially when there's little that can be done for us. :/

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    1. Cath, that is so true, if you admit it to other people you have to also. I hid so much for so long, thankful now to find like minded people who understand xxx

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  6. This is a very thought provoking post! You're very right, just because we cope doesn't mean it's not a problem! Xx

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    1. Thank you Katie, we all do this, it is so wrong but we have so many coping mechanisms I guess xxx

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  8. What's more is the fact that many chronic illnesses run in families so all to often this contributes to the acceptance of pain and suffering to be something everyone goes through. In my early twenties, I began to have really bad back pain, but blew it off because so did my Ma, my grandma, my aunt ect. Turns out, it is Ehlers Danlos Syndrome, undiagnosed for about 3 generations so much as I can go back into the history. It is really strange to think pain constipation, mental fog and all the other things occurring in tandem with chronic illness as abnormal when those things always were there. Definitely something I am trying to wrap my mind around after 20 some years of battling an invisible illness to just receive my diagnosis the begining of this year. Loved your post! Resonates very much!

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    1. Dawn you are so right, that is some time 20 years no wonder you are taking your time to get adjusted to it. My friend in the Chronic illness community has EDS and has a great blog. Here is a link http://www.whentaniatalks.com/
      Thank you so much for your lovely words Dawn, it means a lot
      Love Ness xx

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