Today I am talking about constants. My unwavering constant has been my health - or lack thereof. They say if you don’t have your health then what do you have? Yes what do I have because it’s certainly not my health!
I am Sophie, digital mum and founder of I am Minka. You may be wondering what it's all about and where it came from. Well, Minka means strong in Polish and I wanted a word that represented strength and resilience and overcoming life’s obstacles. I also now realise that Mrs Minka is a Porn Star and a well-established one as I have been @mentioned a few times incorrectly- which we will say is interesting to feed that back to my assessors of my course.
What is RA?
I digress. I am disabled. I have an auto immune condition. I am only 28. I don’t a degenerative condition. I have rheumatoid arthritis which affects my white cell count. I produce too many of one type of white cell that attack the tissues around my joints. This is fine if I had fallen and hurt myself and my body needed repairing but when you create too many white cells, even a small knock can result in inflammation in my joints however, I tend to get random inflammation in joints - AKA giant swellings!
How does that effect you?
So far my left knee has been swollen for 12 years - which rules out getting around without a walking stick. My jaw has been inflamed for almost five years and it's started to affect my hearing and eating and yes that too…(I know you are thinking it...talking obviously!). My back has been the latest victim to my rogue blood cells which well means I can’t sit too long, or stand too long or lie down too long - it's like an odd version of yoga I have to do throughout the day to make sure I manage the pain. Oh and walking more than 10 feet I might as well forget about that, because I've either fallen over, caused myself more pain or it just doesn’t happen because I can’t feel my legs from my waist down so they don’t work properly. My arms are following suit…
Why choose a Mind Campaign
I wanted to start a positive campaign focusing on the mental health of chronic pain sufferers in a way to help me go on a journey with it, help others and bring some awareness to it to the cause.
Do you take cannabis and what does it feel like having your condition?
Watching Live Well For Longer on Wednesday night really touched a nerve for me - no pun intended. I've been looking at options to end my pain. At 28, I can barely move and I haven’t had a pain free day in 15 years. It’s a sort of cross between just running the London Marathon, getting flu and a stomach bug all at once, day in day out since I was 14. It affects my marriage, me as a parent and it affects my sex life - yes disabled people do have sex - it's not gymnastics but it's not without its limitations. Mental health and drastic measures...
And it's not okay - I shouldn’t be asking doctors to chop my leg off because I can’t cope with the pain anymore. People shouldn’t be thrown a cocktail of chemo, steroids and opioids to manage a condition for the drugs to have no effect (in my case the side effects of this chemical cocktail add a whole new level of horrible to my life). It's not okay for the doctor to just draw a line and say there's nothing we can do. As chronic pain sufferers we are told to do more excerise, take CBT and mindfulness sessions because the pain is in our head and excerising on top of pain makes it go away. But it's not in our head and those methods have been proved to not work and keep people like me from accessing disability benefits. (Just Google PACE study - it's too long to go into here).
It's not okay to leave people this way; I don’t want to live another day like this let alone another 15 years. As a society we are failing an entire section of people who deal with chronic pain day in and day out and no amount of positive affirmations (even though I do Iove them) will make this struggle go away. No amount of well-meant but misplaced ‘get well soon’ wishes is going to make us better. It's called a chronic illness for a reason people!
We need better awareness!
There is no fancy benefit in aid to all the chronic pain / auto immune diseases suffered. No one is donating large sums to Rheumatology Charities - does anyone reading even know what a Rheumatologist is- even Microsoft Word's dictionary is getting it wrong! It's not okay that, in 2018, we are not raising more awareness of this. The amount of people that suffer in silence and pretend that they aren’t dying inside just boggles my mind. But I do it every day! I get up, I show up and I put my best fake smile on (it's hiding under my resting bitch face and sunglasses, if you look to the side you can see it - it's probably the glare from all this sun) and I get on. But it’s not a way I want to live anymore. I don’t want to fake it and if fucking Susan tells me to go and eat some weird nut seed combo and I’ll be cured over night because her brothers, aunts, sisters, twice removed cousins next door neighbour’s dog had it and they feed him this stupid diet and he's fine now - I am going to go mad! My point is I am so done with the silence!
Things I am sick of!
I am sick of being pushed aside and not given more medication options.
I am sick of not being able to take my kids to the park.
I am sick of having to prove my pain to a PIP assessor.
I am sick of being told I am not disabled enough so my children get the help they need as young careers.
I am sick of my husband having to help me go to the bathroom so I don’t pee myself (that’s real love for you BTW not Love Island nonsense).
I sick of not being able to afford a wheelchair so I can be more independent.
I am sick of having to plan and not being able to be spontaneous.
I am sick of people calling my husband my carer.
I am sick of being given this amazing chance at life and a body that’s failed me.
I am #SickOfBeingSick!
We need you!
If you have made it this far thank you! That 10 points to your house team (ok I may like Harry Potter a bit too much for an adult but we all have that one thing). Please help me spread awareness of #ChronicPain and #AutoImmuneDiesase #SickOfBeingSick #SufferingInSIlence by posting on your social media a video of you eating a food you hate and then tagging 5 friends to take up the challenge! Whatever it is keep it light hearted with a comical edge to it. #LetsEndTheSilence!