Published on 12, July, 2020
Does anyone else have loads of allergies? I've got loads, and intollerances too, although to be honest I'm not sure theres always that much of a difference. I'm allergic to penecillin, flagyl, NSAIDS, aspirin, opiates, latex amoung the most serious, with latex the allergy is so bad if I have to have an operation I have to have a theatre specially cleaned for me. Even being touched for 30 seconds with a glove brings me up in red bumps. I seem to be allergic to PEGs which are in everything from laundry products to make-up, I spend a fortune on cleaning products because I can't use ordinary ones, likewise body care products, I wish I could go to Lidl and buy thier own brand toothpaste for 79p like everybody else, instead of a fiver on one that has none of the stuff that I'm allergic too. I can't go swimming and can't swim because I'm allergic to chlorine, other people perfumes are a nightmare. I dont' go out to eat or get takeaways because of allergies and intollerances. The allergies probably effect my life more than all the other health conditions combined, certainly the quality of life. I'm told that this is something common amoung women with autism, but it rarely comes up in anything I read about autism, I originally found the information about allergies and autism in information I was reading from a study in Australia, they seem much more clued up than we are. Another thing I can't take are anit-histamines, they either don't work at all or make me lactate which is a 1 in 10,000 side effect, if I really needed them because I was bitten by a snake or something then I would have them, but I can't use them on an everyday basis.
Doctors, dentists and hospitals all totally freak out when they realise how many thing I'm allergic too and I'm sure many think I'm making it up, Ive had several rows with people becase of it, I've been delisted by dentists and there have been some doctors who've given me penecillin even though they know I'm allergic, I always double check with the dispensing pharmacist when I get something from a new doctor. At my GP's surgery I'm known as The Woman Who's Allergic To Everything, but at least they take me seriously and do what they can to help me with meds.
Is anyone else so allergy prone and what do you do about it? Do you get much help and support for it?
I identify with what you describe. It can feel a bit "uphill" and you can get bored with yet again needing to consider and communicate this and that ... again. I sometimes can feel I might sound like a version of the children's story of The Princess and the Pea".
...then I correct myself that:
- it is my real life story,
- for my safeguarding I have to "own it" and
- continue to explore ways to improve how clinicians etc. engage with me (and act as a safety net if I were not able to self-advocate).
Recently, I experimented with using BAS Healthcare Passport. I found some personnel get involved well (while some others just frankly blanked me during the same clinic).
As a result - I approached the Hospital "PALS" service.
They helped me establish contact with the Learning Disability Liaison Nurse.
We had a good discussion about my (mixed) experience / feedback and some refinements and strategies to extend the Passport as appendices bespoke to "me".
That Nurse also encouraged me (without alarming me) to think further about: how would I best navigate an A&E scenario (with potentially greater impacted / constrained communication options)?
Between us, a few fresh ideas came together (which I intend to work on for my "version 2").
The Nurse also offered to lodge an electronic copy of my Healthcare Passport on my record with that Hospital clinic in case I were to be seen by different personnel another visit (I had emailed a PDF).
The other benefit would be I would not need to rely on trying to keep track of which clinician I handed a printed copy to ...whee it was and who needed to see it next (I ought to be able to signpost via the statement: "please consult the Autism and allergies etc. Healthcare Passport on my NHS electronic record".
As I revise to version 2:(and mindful of the Nurse's guidance re: catering for an emergency scenario when I might not so easily speak), I could also put a card in my wallet with that statement to show clinicians (or they might find it). It also looks like my smartphone has a "safety & emergency" details feature with a section where I could edit and save that statement too.
Anyway, some healthcare homework for me to progress.