Hi all! Apologies for my absence over the last couple of weeks but quite frankly I have been feeling pretty rotten, my RA is all over the place, the pain in all my joints, muscles, tendons, head and face is a little bit ridiculous as if I am carrying an obese baby hippo on my back night and day. And it isn’t even a cute baby hippo. All over my inflamed bones are grinding against each other and for every step it feels like walking on broken glass or hard stone cobbles (because RA ruptures the tendons in the feet). And don’t even get me started on my damaged and inflamed ribs which have joined the party making it hard to breathe. The fatigue, fever and struggling of my organs is constant to the point where I am exhausted and ready for bed by 11am, that’s right ‘am’. But of course that doesn’t happen.
Sorry for my body rant! The good-ish news is, I have just started a new biologic, I say ‘good-ish’ as I am trying to ignore the slight anaphylactic symptoms. My hospital is keeping an eye on me due to actual anaphylaxis I experienced on another biologic Rituximab last year which is why I’ve only been on chemotherapy since. But really it’s all good this is normal RA life. And I have received some beautiful bouquets of flowers from my boyfriend over the past weeks for my toil, so that’s rather lovely!
Kind of makes me think though, it’s odd that the government is trying to get disabled people off benefits and supposedly into work (mysterious work, that is accepting of chronic illness, I think not) yet allow able-bodied people a day off for feeling a bit under the weather? By that gauge Dave, those of us with chronic illnesses would need to take every day off work… so go figure! 🙄
And anyway we do work. Hard. Every minute, 24 hours 7 days a week, we work relentlessly to literally keep our bodies alive and functioning as best we can whilst also having to contend with the regular stresses of everyday life. This is our unpaid job. It doesn’t matter whether it is evening, overnight, weekend or Christmas there is no ‘time off’ as this is continuous for life. And when you see us out we are working overtime. Adversely to the average person it is in fact when we are out socialising or on holiday that we actually feel our worst. But we do so because we want to see our friends, have life experiences and we know if we wait for a ‘better time’ that time will never come. If anything we certainly know the value of time.
It has also been a bit of a rubbish day in terms of the Blue Badge for my RA friends. One lady Deb was minding her own business attending a GP appointment when an old lady seemed to think it was ok to follow her into the packed surgery reeling a string of abuse at her for parking in a disabled bay including, ‘if you’re disabled I will eat my hat!’ Oh if only she would, I would gladly hand her a knife and fork. Or maybe just a knife.
Deb Moore, Facebook
Deb was reminded that legally this is classed as assault so she has now reported the incident to the police which is fantastic as most people probably wouldn’t. I then received an unrelated message from a good friend of mine this afternoon telling me of a similar encounter she had at her hospital appointment today in the car park. The last thing you need when you are trying to go about your everyday business with a painful debilitating illness is bullying and abuse… purely because of your illness! Both these ladies are strong, independent, intelligent women yet disability abuse like this is devastating and cuts to the very core when someone is already vulnerable from having a chronic illness. It is so upsetting and stunts the ability to function. We get enough abuse from our bodies thanks. As many of you will know all too well, these are not isolated cases and I will be elaborating on the perils of Blue Badge parking in an upcoming post.
Also in case you are wondering I have also had a response from ITV Studios on The Last Leg saga which I will post on here very soon! I hope you are all feeling well (or relatively well to my fellow chronic warriors!)
Gentle hugs and cake ❤️🍰