Most people will have experienced pain at some point in their life; toothache, a headache, blisters maybe? But do most people know what it is like living with pain?
I can’t remember living without pain. This might sound dramatic, far fetched even but it is true and is a reality for the 1% of the UK population living with Rheumatoid Arthritis (National Rheumatoid Arthritis Society).
If you read my previous blog Unconscious bias you might be thinking how can you cycle 100 miles if you are in so much pain? The answer is you can…some days but it will cost you, and I don’t mean the entry fee (everyone pays that!).
I have been living with diagnosed Rheumatoid Arthritis for 5 years, and currently I’m at the stage where my medication keeps it under control – this doesn’t mean that I do not have symptoms and am pain free, after all I am spoonie! It simply means that providing that I inject a drug used in chemotherapy (at a much lower dose) once a week I have a level of ‘normality’.
This drug has its own disadvantages and to my fellow RA warriors I’m sure you feel my pain when I say methotrexate ‘hangover’. To those lucky enough to not have experienced this it is a lot like an actual hangover, only you haven’t had the G&T the night before, or even the month or year before. Drinking is a no go for methotrexate junkies, your liver can’t stand the assault of alcohol and a cytotoxin. By the way, I have tried, several times and all I can say is that I genuinely felt like I had been poisoned, so I put my wine glass firmly on the shelf a year ago.
Having spent the last paragraph listing out all the reasons I do not like methotrexate, the alternative, not taking it is far worse.
I forget sometimes what the early days were like without methotrexate and how much pain I was in. It is a bit like when you break up with a partner, the longer you have been without that partner you forget the bad bits. Looking back you remember the good times (for me no methotrexate hangover, no injecting etc) and play down the bad bits. Was I really that bad? Did it really hurt that much? Well I can 100% confirm that yes it did.
There are certain memories from the the pre-methotrexate days that I look back on and smile about. At the time I think I was smiling through the tears, both in excruciating pain and giggly off how ridiculous life had become.
Two such memories are; one morning it took me a full 15 minutes to put on my tights for work, my hands were so painful I couldn’t even grip them to pull them up. Then following a similar theme on another occasion I had ring my mum to inform her that I was stuck in my apartment. Had the lock broke? Was the door jammed? No, my hands just wouldn’t work. I couldn’t grasp the handle to open the door. Trust me getting to work late that day was like a ‘the dog ate my homework moment’. ‘Sorry I’m late I couldn’t open my front door, it seems that my hands are not fit for purpose’.
There were countless occasions like that, where everyday activities felt as hard as it would be to climb Everest. I would think ‘can you imagine, some people do not use their teeth to squeeze the toothpaste out the tube, some people brush their hair without being in agony – huh? How strange’.
Those days seem a life time ago but despite medication and periods of remission, RA never lets you forget it is there. I still have daily aches, I can’t just step out of bed onto a hard floor, the balls of my feet are sore. I can’t always open jars, bottles or doors easily as my wrists are weak.
The pain of RA is largely ‘invisible’; some people will experience red and swollen joints, which I get occasionally but the pain is disproportionate to how bad they look. The most visible signs of my RA are likely from unwashed hair and wonky tights in the early days.
Okay, so this doesn’t sound very positive so far does it? I can tell you the pain itself isn’t, but what I have learnt from pain is.
Living with pain has taught me to ‘seize the day’. I never take tomorrow for granted, tomorrow I could have a flare sending me back to those struggling with tights days. I’m proactive, a go-getter, why do something tomorrow that you can do today kind of person?
Pain has also taught me how strong I am and how strong others living with invisible illness are. I have survived days I thought I wouldn’t, I have coped with surgery procedures that on paper have terrified me. I know now that I am resilient.
Finally pain has taught me to be grateful. I am grateful for the inspiring people I have met through my illness, for my friends and family, for my career and my employer, for my health and my life as it is.
My pain is invisible but my battle is real