All the diagnoses, and the sandwich effect…

I felt like writing a blog to help me get started on my assignment, which is due next week, shaking off the figurative cobwebs, after months of not really writing much!

I have never been good at titles, I remember whilst studying for my journalism qualification that this was a regular comment, but the above gives you a very rough idea of what I want to write about.

I was wondering what would make more people want to read my blogs or other pieces of writing. I wondered if that my writing probably will contain something to do with chronic illness might put people off, either because it might be triggering for them, it makes them feel down or they perceive it as being negative (like the ‘positive vibes only’ crowd...).

I’m going to try using trigger warnings at the beginning, so if I describe medical procedures in detail (which will be rare, as this is something that I like to forget), I’ll put a warning. The same if I go into anything with mental health issues or anything that can be seen as heavy.

I will say though, that as my blog and much of my writing comes from my personal experiences, much of it will be to do with my health conditions. I like to add a touch of dark humour in there, and I think it’s important to talk about my personal experiences of these conditions, so others don’t feel alone.

So, going on to the sandwich effect. No, I don’t mean the edible kind:



I mean putting something fun first in the blog, then with the medical stuff, and ending on a positive note, much like if you’re giving feedback to someone. I might start off with a random photo or something fun I’ve done recently, then to the serious stuff, and something else at the end. It might be that this formula doesn’t work for me, but hey, let’s try something new.

This week, the fun part was the silly photo of the sandwich, now I get to the part where I talk about health conditions, mainly the new ones I can add to my growing and unwanted collection.

*Medical Gaslighting rant warning*

After nearly two and a half years, I finally have a PoTS diagnosis! Well, kind of… The tilt-table test was borderline, so essentially, I just have Dysautonomia, which is a bit ambiguous as that can describe a number of conditions. My cardiologist said he is treating my condition like PoTS, as I have the symptoms, I just don’t meet the strict criteria on the tilit-table test. To treat it, I take Ivabradine, use sexy (not) compression socks, add more salt to my diet, stock up on electrolytes, and chug water like there's no tomorrow.

Unfortunately, I started a big flare up the day before I started the new meds in September, and it hasn’t really waned. Lately, my days consist of sitting up in bed, watching TV or studying with my ‘bed desk’ (beanbag lap-tray with my laptop), and because lying down for too long is also bad for me, getting up and moving around a bit. The moving around is usually preceded by a big headrush, and a feeling of “I think I might faint now”, I have to stand and steady myself while my blood sort of settles. Things I took for granted in the past like walking up and down stairs or bending down to pick something up, are extremely difficult (the latter is practically impossible). I don’t think that being more inactive since the beginning of 2020 has helped either, as I have become quite deconditioned. I’ve been looking into chair yoga or chair Pilates, and trying to use an under desk exercise bike, and hopefully I can build up some strength in time.

I’m frustrated as I feel that if I had been diagnosed earlier, maybe I would be in a better position now. When our government want to get disabled people back into work, they need to fix the NHS and support those who need it (along with many other things, but maybe that’ll be another blog for another time). I’ve spent the past few years not knowing what I’m dealing with, and I didn’t know what will improve or exacerbate my symptoms.

I had another appointment at Guy’s hospital in London this year where Lupus was suspected again, and I was referred to Rheumatology in Brighton. They were super dismissive in my previous appointments, and they kept this up in my most recent appointment. The doctor tried un-diagnosing me with Hypermobility, despite not going through all of the points on the Beighton scale (plus the hands flat on the floor test was impossible due to PoTS and feeling faint). She also said that the Lupus-like skin issues I get with the sun is because “you’re so white!” Implying that it must be sunburn, completely ignoring the fact that I’ve been avoiding direct sunlight for the past couple of years, and how I used to tan after sun exposure.

Two good things came out of the appointment though, that she has ordered more blood tests, and I have another appointment with them in April next year. I’m not looking forward to that appointment, but the Dermatology team at Guy’s want to keep me on and see me in June, so all is not lost. I think I might be begging to be referred to their Lupus or connective tissues disease clinic!

Another diagnosis I received recently was ADHD. I can imagine that some people might roll their eyes at this, due to the amount of people now being diagnosed, but that’s because there is a high proportion of women and girls who were not diagnosed earlier in life. Plus, we're excellent at masking to fit in.

ADHD makes a lot of sense to me, so regardless of people’s beliefs of “Oh everyone is a little bit ADHD/Autistic…”, it is helping me make sense of why I am who I am. It also explains my constant need to be doing something, which is both a blessing and a curse with chronic illness. I’m currently on a waiting list for meds, so I’m hoping this will help me focus.

Although both diagnoses were a relief in a way, it is also a lot to take in, especially when I’ve had other medical stuff going on. It’s been playing on my mind, and my sleep has been…well…practically non-existent!

I won’t ramble on any further and thank you for reading if you’ve got this far. Ending on a positive note, I’m carrying on with my course this academic year, and here’s a cute photo of one of our new kittens (Morgana isn’t a fan yet, but maybe he will be by Christmas!)

Lots of love,

Jo xx