Over on Instagram, there are plenty of things going on to raise awareness for Chronic Pain and Interstitial Cystitis. I’ve seen daily videos, fact posts and taken part in a couple of photo challenges. But I stumbled across a new way of raising awareness from my friend Elle (@thechronicpainlife over on Instagram – you need to check out her account!) that I think is absolutely brilliant.
Elle’s challenge is about celebrating and finding the positive things in our life despite the fact we suffer from chronic pain. And not only does it consist of some really great questions and bits that will make you think, it’s designed beautifully.
I’ve posted my answers on Instagram, but you can see them in this post too, and if you want to take part, then follow Elle to get the templates from her stories and make sure you tag her in them as well.
1) 5 things about you NOT related to pain
Five things you may or may not know about me – illnesses aside – are that I have 2 house rabbits (although they currently live with my parents). Their names are Thumper and Harley Pickles. We also used to have a third bunny, called Bunnola, who sadly passed away. They are all rescue bunnies who now live a life of absolute luxury!
I also love baking, especially cakes, and even though I have worked in hospitals for a long time, I used to hate them! Even the thought of going in to visit someone would freak me out. I think this is because I never had any exposure to hospitals as a child as I was healthy (apart from the symptoms I was repeatedly told were “normal”!). You gradually get used to them though, and now they are like a home away from home.
I also met my husband whilst studying at university. We were both studying to become Physiotherapists and lived together. Even though we have been together for years and years, he hasn’t been able to curb my shopping habit, or my love of Tiffany jewellery!
2) 5 things you wish people knew about a certain treatment
Ok I’ll be honest and say I did three separate treatments – two for Endometriosis and one for Interstitial Cystitis.
- It’s unpleasant to get an injection in your butt every month
- It’s riddled with awful side effects, such as hot sweats that leave you dripping from head-to-toe, migraines almost constantly, muscle and joint pain, fatigue and acne
- It won’t fix or cure me. It won’t stop the Endo growth. I can’t be on it forever. All it will possibly do it slow the Endo growth down.
- Hormone replacement therapy (HRT) is not always optional and is not nice – it comes with its own side effects!
- It has completely ruined the cycle of my periods
- Even though it is technically a type of “minimally invasive surgery”, it takes a long time to recover and the work they do inside can be major
- It is very painful despite the small incisions
- Gas pain. Just gas pain. It can be agonisingly painful in your shoulders
- I’ve had 3 laps, and even though you’re often listed to be in theatre for 1 hour or so, I’ve been under the knife for up to 4.
- Despite it being cut away, the Endometriosis will grow back
- It’s embarrassing to have to spread your legs frequently and have nurses fiddle around down their poking you with a catheter
- Actually being catheterised is very very painful
- They drain your bladder beforehand – you are literally led there peeing in front of the nurse
- The installation fluid stings when you hold it
- They become less effective over time
3) Your top 5 distraction methods
For me, staying distracted when my pain is really high or I am waiting for pain relief to kick in is really important. I’ll often spend time watching a film or TV and cuddling with my husband. I also found that blogging and writing is not only a good distraction method, but it helps me deal with things emotionally.
Other distraction methods include getting a massage, and – you may think I’m crazy – but going to work. Chatting with patients or having to focus on their needs rather than my own is really helpful.
4) A quote that helps you through happy days and a quote that helps you through sad days
I don’t have an actual quote as such, but when I am having a happy day I like to remind myself to be proud of what I’ve been through and experienced.
Similarly with bad or sad days, I find that it’s my husband telling me to keep going, keep being strong and keep doing my best that pulls me through.
5) What are 5 things you want to do when you are pain free?
When my pain is better managed (as it is unlikely that I will ever be pain free), I would love to do the following;
- start a family (when the time is right!)
- do a Masters degree in Orthopaedic medicine
- lecture at my local university more regularly
- start my own physiotherapy business
- rescue all the bunnies!
6) Who are the 5 people that you can talk to or are there for you when you are in pain?
Well, the number one person is of course my fabulous husband! Even when he is at work or out, he always tells me his phone is on in case I need him. Sometimes just having the knowledge he is there is all I need, but of course receiving a lovely message from him as a surprise in the day is even better!
My mum, dad and other family members are always there too. My parents live a good couple of hours away, but we’ll always stay in touch via text or phone and visit each other regularly. I always think it must be hard for my parents, as they aren’t always here to experience how it really feels or be there after my operations, but just the fact they are at the end of the phone is enough for me.
I also have a small but close circle of friends who I can turn to when things get tough, and often they’ll be the first to get in touch and make sure I am ok. Sometimes if I am comfortable with it, I’ll also open up to my work colleagues.
And last but certainly not least is the online support I have received. I mentioned in one of my earlier articles (available here) about how important and invaluable I found the online support community, but I have to do a little shout out to Elle (@thechronicpainlife) and Nicole (@myendostory) for being there recently (I love you!).
7) What are 5 lessons that living with chronic pain has taught you?
I have learnt that I am both braver and stronger than I ever knew and I am great at hiding then things get tough or I am struggling (although I wouldn’t say this is always a good thing). I have also learnt that work is not the most important thing in the world, and that sometimes I have to put myself and my health before anything else.
8) What are 5 goals for yourself within the next year?
My goals for the next year are;
- Lecture more frequently and take up more offers of work at my local university
- Have my SNS surgery (we have had to delay the date due to my ruptured cysts)
- Travel more
- Look into starting my own business
- Reduce my hours at work
9) How does pain affect your life at work or in education?
This is a big one for me, as my pain has really REALLY affected my life at work. It has often prevented me from treating patients who require a lot of manual handling and physical interventions, as it triggers my pain to an unbelievable level. This means that I’ll often be limited to less physical duties, which whilst frustrating, has meant I have excelled within the senior management team.
I have also found that it has impacted on the relationships I have with my colleagues, particularly when I was first experiencing problems. I also worry that they think I am taking the mick or being a bit of a wimp – I have provided my work with as much education as I possibly can, so I always hope they understand what I am going through.
Being in pain has meant I have had days off work. Now, normally I won’t take days off for pain because I do have a bit of a tendency to push through, but as mentioned above I find work a good distraction. However, in light of my poor ovaries and ruptured cysts, I have had regular days off and had to leave early when my pain continues to rise. This means I often can’t finish work.
I feel I can’t do my best when I am in pain and that people make assumptions about me.
10) What are 5 things you are proud of achieving?
My biggest achievement to date is that I was able to get back to working full-time. Alongside this, I am also proud of the fact we saved super hard to buy our first home, we got married and I managed to get through our wedding with minimal pain. I am also proud of myself for trying all sorts of different treatments and medications and getting through my ever-growing number of operations.
I’d love to see what your answers are, so please feel free to join in with Elle’s challenge! You can take part daily or do it all in one go like I have.