I have been pondering the concept of pain lately...my body keeps throwing these curve balls at me...and some days the pain has been off the chart. Completely random...like how can your scalp hurt so much that you cannot find a comfortable way to wear your hair? Or your gums ache like they have been flossed by wire when you haven't flossed your teeth in days (don't tell my dentist that one!)? 

Well, it has been awhile since I wrote Part 1 and Part 2 of my journey into Chronic Fatigue Syndrome...so if you haven't had a chance to read them, or would like a refresher here they are...

My CFS Story- Part 1: The Never Ending Cold
Back where it all began!

There are a whole range of favourite things that you begin to miss when living with a chronic illness. Your life has been completely turned upside down, and quite rapidly. There are things in your life you can no longer do, and a whole new world of illness, appointments, medications and a whole whole whole lot of time is spent at home. There are the typical things that you might easily imagine a person may miss…having a social life, being productive at work, career aspirations, playing sport… to name just a few. But there are also some more unique ones. This list may vary from person to person…but for me here are some of the big ones. So here are some of my favourite things that I miss since having a chronic illness!

1. Buying exercise clothing

I used to love having an excuse to buy fun new exercise gear. A new tank top in a fun colour, a bright sports bra, or a new pair of runners when shopping overseas. Now, sadly, I have no excuse to buy such products. My supply I had built up from exercising most days in the week, can easily suffice for my three 15 minute walks a week. Hanging for the day when I can again splurge. I presume this will correlate with the day I can again run...I miss running! I miss running…and long walks on the beach.

2. Dressing up for work

Whilst we are on the clothing topic…I miss dressing up in professional clothes for work. I have a wardrobe full of cute dresses/tops/skirts that are just biding time waiting for the day I have an excuse to wear them again. Nowadays, my everyday wear consists of a comfy dress or shorts and a tee in summer, or a pair of jeans in winter. If I am feeling like rubbish and am spending the day moving from the bed to the couch then a pair of trackies and a hoodie will suffice, and if I am feeling really really rubbish I may change my PJ’s each night before returning to bed. I now own multiples of my favourite PJ’s the same way in the past I would buy multiple pairs of my favourite super comfy jeans.

3. Using my brain

Alongside not being able to dress up and head into work, is the fact I feel I no longer get to stretch my brain. All cognitive activity has been grounded. I want to be reading into educational practices, I want to be recreating and inventing innovative programs, I want to be expounding theology. Yes, I can still do this, but broken into 20 minute chunks of time and limited to three blocks a day. This does not get you far through an educational journal article, or a passage of scripture. What I would give to have a fully functioning brain again!

4. Reading a novel

Oh, how I miss escaping into a novel. The days of reading a book in one sitting are gone, with like cognitive activity, my reading limited to short blocks. And, sadly, I do sometimes get carried away and engrossed in a good read (as one should), but then the payback is just too great. You heard it here from this teacher...too much reading just ain’t good for you. (Please don't tell any of my students this!)

5. Window shopping

I was wandering through a shopping centre in early November having met a friend for lunch at a café there. I had planned my parking details thoroughly (this was before my disability pass days). I had found a spot next to the closest entrance to the café. This parking spot had me just need to walk through part of a department store to get to the café. After a very lovely, very sugar filled, catch up with my friend, I stared longingly at the rows of high fashion shops in front of me. So close yet out of reach. Not enough energy to even consider a brief walk in that direction. Let alone the torture and expenditure that trying clothes on would be. I meandered through the cosmetic section of the department store on my way back to the car. My senses were overloaded with bright lights, swirling colours and aromatic fragrances. I wondered how long had it been since I had window shopped? How long since I had been to a shopping centre without a distinct purpose of getting in and out as quickly as possible with minimal energy expenditure? What a privilege it once was to be able to wander through a shopping centre without care or concern for health!

6. Cleaning

Yes, you read that correctly, cleaning! A much hated, yet unfortunately, necessity by most of the general population. I disliked it immensely myself for many years. But there is something about being trapped in a house or a room, all day, everyday, that makes you want to clean. Not the fun spring cleaning- rearrange the house type of cleaning (I have always liked this side), but the dirty dishes piled up on the sink, floor that needs vacuumed, clothes that need washed sort of cleaning. It is there in front of you, needing to be done, yet, your body says otherwise. And instead you are forced to leave the messy house in front of you or risk using up the day or weeks energy deposit. So, yes, sometimes I even miss cleaning!

7. Spontaneity

When you live with a chronic illness everything needs to be planned. On the macro level for the months ahead, on the micro level of when you are going to be able to take your next break. I miss long days where a morning workout turned into breakfast, then Yum Cha and followed by a trip to the beach. I miss late afternoon texts inviting you out for dinner that night. I instead spend my days planning out the finite details of everyday. If I have two appointments in a day, scheduling in the need to come home for a rest in between. If I have an evening out for a family dinner, knowing that I need to rest the next morning. Planning my appointments late enough in the day so that in the morning I can get up, have coffee, rest, have breakfast, rest, have shower, rest, get dressed, rest and then be ready to leave the house.

8. Having things to talk about

Nothing happens in my week. I rest. I watch TV. I have appointments. I have another battle with a government agency or my insurance company. Repeat. That is it. Period. Nothing new happens. All the appointments are ongoing. And my health varies only ever so slightly in a week. So come Sunday and making it out to church, or a phone conversation with family or friend there is nothing new to talk about. Nothing new happened at work or home. Nothing! The most exciting thing might be a rare positive government agency appointment or a new TV series. One week my car number plates were stolen. I was so excited that I actually had something different in my week to talk about!

9. Dinners out

I miss long tasty meals out. I miss the conversations. I miss the ability to keep up with these conversations. I miss the wide variety of food. I miss really good pizza and pasta. I miss crusty bread and real butter. I miss spending quality time with friends. I miss a good glass of wine. I miss going out at night...going anywhere at night!

10. Caring for others

I have always loved serving and caring for those around me. My heart breaks as friends and family around me are going through hard times and there is nothing practical I can do to help. I can't drop meals off. I can't come and mind the children. I can't give them lifts to appointments. I can't give and care in the way I would love to. However, I am learning the importance of a well-timed text message. A phone call or remembering appointments or events in the lives of others. Even though I can't do the practical, the everyday little things can mean the world to someone.


These are a few of my favourite things I miss.

I think one of my next posts should be about my new favourite things since having a chronic illness, because even though I miss a great deal, there are still many things I am thankful for and blessed abundantly by.

What are some of your favourite things you miss?

(I may have enjoyed an adventure to see a certain musical this past week...you will never guess which one?!)