Wednesday, 8 May 2019

Finding That "Social Balance" When You Are Chronically Sick


It's been a while since I have been on here- there have been lots of changes and lots to update you on- but I shall tell you more in later blog posts to follow!... 

As for me, lately I have been feeling like I'm on a hamster wheel trying to keep up and not miss out on family/friends events yet it just causes more recovery and down time.. Does anyone else experience this?

I made a decision around Christmas that I wanted to “be more present” I had some incredible friends who stuck by me through hospital appointments and admissions for quite literally years with me barely leaving the house.

Since some of my symptoms/conditions I have a bit more grasp on now (mainly my heart conditions-thanks to steroids and medical advice from cardiologists) this also comes with the opportunity to be able to leave the house a fair bit more than when I was previously collapsing or seizing in the street once a day... 

(Although my stomach and colon, are still my most embarrassing, unpleasant and painful symptoms.)

I guess what I am trying to say is, there is a big road ahead of us with chronic illness, our journeys will never be linear to our "cure" of course we will have flares followed by better periods.. 

The difficulty I have dealt with lately is being "better" than totally bed bound at one point, but also not 100% managing my condition yet.. 

I'm really trying to discover a balance of my chronic illnesses stop me (-which isn't easy given on some occasions I have gone from laughing and and having a great time with friends to on a morphine drip in hospital in a matter of hours..)

So, my question to you lovely lot is..., I want to know from you guys if you almost “overcompensate” when you do have the opportunity to socialise? 

For me, it can feel like so long since I have felt "normal" and socialised after the majority of my weeks are still spent in endless hospital and doctor waiting rooms and in the midst of all that a lot of time alone..

I want to feel "normal", I don't want to let others down, I still want to be invited and be able to attend events. Yet in turn sometimes by pushing myself to go and make sure I have a great time and feel "normal" it also causes me to spend days in recovery and my conditions to be much worse if I hadn't gone...

Please tell me I’m not alone on this one? Has anyone gone through this or is going through this? How are you managing to find that balance when being able to socialise once a week/fortnight/month, yet you are still sick.. still trying to find management of your conditions. 

"The Hopeful Chronic"

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