DAY 6 of Chronic Pain and Interstitial Cystitis Awareness Month

As mentioned in one of my previous articles, September is a busy month as it serves as the awareness month for both chronic pain and Interstitial Cystitis.

I’m taking part in the photo challenges created by two fellow Instagrammers, but thought that as day 6 was quite an apt day considering what I am currently going through, it deserved a full-on post.

The sixth day of the Chronic Pain Awareness Photo Challenge is “what are your spoonie essentials to get through the bad days?” and the sixth day of the Interstitial Cystitis Awareness Month Challenge is “can’t live without”.  So, here are my answers!



What Are Your Spoonie Essentials to Get Through the Bad Days?  Credit: @ostdalost

A bad day for me is either one of two things; pain or fatigue.  Thankfully, the fatigue days are infrequent because my M.E./CFS is currently well managed, but the days in which I experience awful and worsening pain are the opposite.

If it is my fatigue that is creating a bad day, then my essentials are as follows;

  • Rest, rest, rest!  I’ll make sure there are plenty of opportunities for me to take it easy and avoid prolonged periods of physical activities
  • Comfortable clothes (typically PJs!), as when the fatigue flares up I can find my skin and muscles quite sensitive, and loose and comfortable clothing helps irritate it
  • A nice warm blanket.  Although this may sound silly to some, being able to feel all warm and cosy when you are tired encourages rest and sleep
  • Plenty of water, to encourage me to stay hydrated
  • My husband – so that he can tickle my feet or rub my legs!

If it is pain that is causing a bad day, then my essentials are different;

  • A good supply of pain relief to hand at all times – this can mean a separate load in my bag, by the sofa or by my bed.  This not only means they are at hand, but it often prompts me to take them
  • A notepad so I can write down my allowed doses and taken doses of any medication (particularly useful if medication makes you drowsy and you may forget!
  • My heat pad
  • My TENS machine
  • The ability to have a lovely warm bath!
  • Plenty of water, to encourage me to stay hydrated
  • Simple, plain snacks such as biscuits in case the pain or medication makes me feel nauseous
  • Loose trousers (normally PJ bottoms) to help relieve any pressure or tension on my Endo Belly
  • Distractions, such as films, writing or reading
  • My husband -so he can rub my tummy or feet!

Can’t Live Without.  Credit: @fitchickwithendo

The thing I really love about this Interstitial Cystitis Awareness Month Photo-A-Day Challenge is that there is so much room to interpret each word or sentence.

For me, the one thing I most definitely can’t live without is my husband.  Other than the obvious fact we are married and in love, he is my support system.  He is always there to reassure me, make me happy and fight my battles with me.  I can’t believe how hard it must be for him to have had to take on all this (I remember when I was first diagnosed with Endometriosis, I told him he didn’t have to stay with me because of what the disease might mean for him too), but he handles it so well.

The other things I can’t live without would be my phone.  This is not because I am addicted, but because it is the main form of communication I have with my parents, other family members and friends since we moved quite far away.  As well as this, I certainly would struggle to live without chocolate or the ability to go shopping!


I’d love to see and hear what your answers are, so please tag me in your posts (@endobunny) so I can have a look!

Now, as my latest bad day has actually lasted 3 weeks, I am spending most of my time with my essentials to try and ease my symptoms, waiting for my husband to come home (and rub my feet!).


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