Anyone with a chronic illness ( especially one that’s hidden) will understand how completely embarrassing it is.. not only to be torn away from your previous life of being a fully functioning, productive, professional person, but to have to claim benefits ( side bar – why are they called “Benefits” when they don’t Benefit anyone at all, they usually give a person the bare minimum to be able to cover bills) makes you feel so very small and uncomfortable.
For me, my initial “ESA” assessment was embarrassing as hell – explaining how my lifehas been ripped away to somone who just didnt “get it” was so awful.. Not to mention the things they ask you to do (lift arms up, walk about etc) – things you used to do without a thought, but which now cause pain and possible days of after-echoes, all add up to a totally embarrassing moment in your life.
But then the PIP assessment a year later was worse.. I was angry as I knew I should be on the other side of the desk… nit the one this side, crying, depressed, masking the pain with 8-10 painkillers a day and anti-convulsants / anti-depresents of a night.
Again, sadly I dont think they uunderstood, but at least after the first half hour I stopped feeing like I was at am interogaction and that she may actually be listening.
That was 4 years ago and although Fibromyalgia, Diverticulitis, & all the other additional issues dont get better in fact I’ve had more things pile on.. I still have to re-apply, be re-assessed.
I think the fact that I am so very angry, has gone against me.
I fight every day against this pigging illness.. I may not win much (90% of the time, like now, I am home on the sofa or in bed, with a hot water bottle, feeling sorry for myself) but some days (3-4 a month) I pull myself out of thefunk, put makeup on to hide the very purple under eyes, do my hair ( with a travel hairdryer and straighteners as they are all I can lift) and go out somewhere.
This is usually a charity event ive helped put together ( so mmuch can be done from bed at 3am with dragon speech software) and it gives me a sense of still being productive. Ive put together people ( from my network), who have dne amazing things & yes I take comfort in that.
I’ve brought the subject of Fibromyalgia out in front of pepole who never even knew aout it. This gives me immense strength as it’s so missunderstood.
I thank every day for social media as it enables me to talk m way through life, pretwnding everything is ok. I post images my daughters sendme and to people I need to believe that I am out, about and all fine, I look like I am out a lot.. this helps when looking for sponsors for the small charities my brain can stIll help, while my body cracks, aches, screams.
I’ve been up now for 2 hours an my legs feel like I’ve been kicaked, my hands are burning and my stomach is churning so it’s a GOOD day!I reckon I’ll have at least till 6 hrs or so before I need to drag myself back to bed today..
So I’ve got a coffee, sat here, dictated this and am now about to take all my afternoon ttablets.
Then I’ll change positions while sitting (what feels like a million times) each time my joints hurt too much, whilst watching TV.
Anyhoo – its pain awareness month and I am going to make damb sure people are aware!
*** Help it looks like my speech software is not picking up some of the words today 😥 apologies for the spelling erors.. so bloody infuriating. Ill correct them when my finges feel better..