Hey! Hey!
Many thanks for returning and I welcome you to an emotional, but wholesome edition of not just a headahce, honey.
If you are new here, hey! I’m Lucy! A 20 something year old girlie who is something of a medical mystery! For some reason, my body likes collecting chronic conditions like they’re Pokemon! Whilst I can think of greater things to be achieving in my 20s, if some good can come from me yapping about my experiences then I’d say that’s a win!
In this post I want to highlight a couple of standout moments from some incredible nurses.
Setting the scene …
The on call consultant neurologist broke the news I was being discharged despite still being in a lot of pain. The only advice he had to offer was to just lie down for a while. While I am very aware is the best pain relief option for CSF leaks, that was something I had been doing for nearly 4 months straight at this point. Such a comment was easier to make than it was receive. It was also apparently all it took for the tears to start flowing and the emotion of the whole situation take over.
“Your feelings are valid Lucy. Let me speak to the nurse in charge and see what we can do. It’s the bare minimum you deserve.” The kind words alone from one of the staff nurses, Maria, were alone enough to ground me slightly because in just a few short sentences she had validated my feelings.
A moment costs nothing, but means everything …
A few moments later, in walked one of the nurses I had grown to love very deeply. A nurse who had looked after me during every admission (I’ll let you decide for yourself if that was a privilege or unfortunate).
She smiled, sat down next to me, and asked me to talk. I explained that my head was still hurting so much and that the reality of the whole situation was getting to me. At this point I’d been admitted 3 times (we were only at the beginning of April) and at the age of 27 that really sucked.
Instead of telling me I have to be patient, or something of a similar patronising matter, she so calmly told me it was okay to cry. That if she had a magic wand she would wave it and make this all disappear. She asked what my support system was like, and if I had considered looking into a charity that may have someone I could talk to just to help with the lack of control I was feeling at that moment.
She went on to emphasise that this suggestion was just that, a suggestion, and if I was sat there thinking ‘what an earth is she going on about‘ then that’s okay. She told me its easy for her to say because she doesn’t have the pain, but asked me to not struggle on my own please. To not keep anything inside and suffer on my own.
To many reading this, you may think that’s not that big of a deal, but as someone who was flooded with bad experiences in the past (at other hospitals), I cannot stress enough the value of being listened to without any judgement …
Fast forward a few hours …
Let me reset the scene … My 12-weekly botox injections were already overdue, but my appointment was not until the following Friday. In light of the clearly visible pain I was (still) in, the ward sister contacted the headache team to ask if the injections could be done before discharge. As the resident guinea pig of the headache department (my self-awarded badge of honour), of course they agreed!
Seeing Sophie, one of the headache nurse specialists, was enough alone to prompt an almost genuine smile from my very exhausted self . Even though I hadn’t known her very long, she had matched my energy from the first time we met, so instantly became someone I trusted.
Having not seen her since before my operation 6 months ago, that was naturally the conversation priority! After sharing our excitement for the success of the then long awaited surgery, she went on to ask how I was really doing at the moment …
A very loaded question …
I told her my head really hurt. I know that probably sounds obvious, but she got what I meant. I was so tired of being stuck lying down all the time, fed up with all these invasive procedures that didn’t even help, and deeply irritated by how much this whole thing has taken over my life.
Clearly having my priorities in order, I rambled on about having tickets for the Paris Olympics in the summer, but the hope of actually being able to attend seemed to be slipping further and further away.
The power of words …
I’ve never been the best at reading the room and knowing when to stop yapping. Thankfully, this time happened to be one of the rare exceptions, and well I’m glad it was …
“We are genetically wired as humans to feel like we have to be doing something all the time, but we don’t. At the moment, resting is the best thing for your body. Even though you can’t do what you want to do, or feel like you should be doing, it’s the only way your body can cope. It doesn’t make you any less important or any less worthy as a person.
I haven’t been in the position you are in, but I do know what it’s like to be in a situation beyond your control. Believe me, you will get back to a point where you are able to fight for yourself. It just might take some time given your current circumstances. Please keep fighting Lucy, keep finding pockets of humour and keep talking to us because you will get there and we will support you all of the way.“
These words hit me hard and stuck with me. It was so genuine and so heartfelt in a way I don’t think I had ever experienced before. To this day I have never known if she had been pre-warned I was feeling down, or if she could just tell from my body language, but in that moment I felt like I could take on anything!
If you search hard enough, there really are some good people out there!
X O X O,
Your favourite headache
You opened my eyes and you made me believe ~ Crazier, Hannah Montana: The movie, Taylor Swift
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