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

Reflecting (a freewrite/mind-dump).

It’s been three weeks since my studies finished for the academic year, and although I’ve liked being free of study guilt, I’ve felt a bit lost. Getting back into studying has given me a sense of purpose which I’m otherwise missing from my life, and it feels a bit strange not having any deadlines to meet (although less stressful, which can only be a good thing).

Although I always feel like I should be doing something, I’ve been feeling this more intensely over the past couple of weeks. I possibly need to learn to relax a bit more over our questionable summer, and maybe come up with a new routine.

This is the first piece of writing that I’ve written since I submitted my final project, so it might be a bit rambling, but I wanted to write something to get going again. This could also be why I’ve felt weird, as I haven’t been writing at all, when I was used to doing this every day for several months. There's a chance that I might repeat information that I've written about in previous posts, but as it's a freewrite/mind-dump, I'll pretend I haven't.

I think not having the distraction of my Masters brings my attention to other areas of my life, my health obviously being the main area that I have to focus on. One positive is that I don’t have any new lesions on my brain, so no new MS activity in seven years! The other health conditions do exacerbate my existing symptoms, so the MS monster is still there, it’s just less powerful than it was, which is obviously great!

The dizziness and feeling faint all the time took over my life for the first few months of this year, but now it isn’t as bad, although I’d like to know what is causing it (I imagine PoTS but it isn’t confirmed).

I’m still waiting for a Tilt Table Test to help diagnose PoTS , which I was referred for over two years ago. Two appointments they offered had to be cancelled, but on a positive note, it looks like this might happen soon. Lupus might still be on the cards, as a doctor at Guy’s in London recognised further symptoms that could be related to it. I’ve also been experiencing strange stomach pain, which my doctor thinks could be my Gallbladder. With the potential PoTS I can’t have large meals (especially with carbs), or I nearly pass out. I have to eat small amounts of food so not to aggravate my Gallbladder, and if I dare forget to apply SPF, I have a horrible fever, rash and various other Lupus-like symptoms.

I often wonder that if I had been seen sooner for the dizziness symptoms maybe I would still be employed. Although it would be working in a job I don’t enjoy, so maybe this was a blessing in disguise, as I doubt I would have pursued writing as a possible vocation.

It’s difficult, as lack of employment interlinks with my independence, especially being able to be financially independent. I’ve been feeling quite down as I can’t work it means that I can’t really move on with my life. I know that I am in a better position than many others as I have a supportive family, I have a roof over my head, etc, and I’m thankful for not living in a war zone of course.

Years ago, I wouldn’t really acknowledge my feelings like this, which isn’t healthy. I think our society has an unhealthy attitude of saying it could always be worse to most problems, so many people’s feelings don’t feel valid even if they are. I don’t like to dwell on things too much as I think it causes more stress, so now I acknowledge the pain, process it (as best I can), and try to find a way to move forwards. I’m making it sound simpler than the reality, but I guess the gist is we all find a way to cope and survive.

Writing this blog post is a part of me acknowledging how I feel and why I feel it, and highlighting the good things in my life. Yes, I have a variety of annoying health issues to manage, but I’ll get to where I need to be eventually. Being chronically unwell I’ve learned that I need to find alternative ways of doing things, it isn’t always impossible. My goal is to be self-employed (a mix of writing, editing, TEFL teaching), write a book (I’m writing this as part of my MA), and to hopefully move away from the UK. I find that my symptoms are worse in the UK because of the climate, and I appreciate that climate change will influence my last goal, but I need to live somewhere less humid.

I’m going to try and write in here more regularly and have themes for my blog posts surrounding living with chronic illness. It’s all good writing practice, even if no one reads it.

Anyway, thanks for reading and hopefully the next time I post we will finally be rid of the Tories (good riddance), and I will be savouring the study break (the calm before the storm!)

Jo xx

*Photo of the view in my garden on a rare sunny day

In limbo!

I’ve been meaning to write a blog post for a while, my intention at the beginning of this year was to write at least one per month, but that hasn’t worked out. I guess writing regularly on my Creative Writing course takes a lot of my creative energy, plus having multiple health conditions (it’s almost like 'what don’t I have' at this point, haha), and also being very unwell from something which is as yet undiagnosed.

Anyway, I thought that this post can be an update on what’s going on with me, and what a typical day/week looks like for me. Some people might find others talking about their health issues so openly a boring or negative thing, but I see it as educating others on disabilities (sometimes hidden), and also doing away with toxic positivity. I also think that if you don’t want to read this, then you don’t have to :-)

So, for an update – since the beginning of this year I have been feeling constantly dizzy, to the point of feeling faint. These symptoms have worsened progressively since I was referred for PoTS two years ago (yes, really). There have been a few times where I may have blacked out, but I can’t remember exactly. This, on top of my usual chronic pain and extreme fatigue, have made my life extremely difficult. I’ve finally had two out of the three tests needed (a 24 hour ECG and an Echo), but I’m still waiting on an elusive Tilt Table test. Now I’m in limbo – which is something I’m unfortunately used to, but I’ve learned to live with it.

To give you an idea of a typical day for me, everything makes me dizzy. I can’t stand for too long, but I also can’t sit or lie down for too long. I also can’t exercise normally, even mat based Pilates is dangerous in case I black out when I sit up. I can sit down on a chair and use an under-desk exercise bike for a very short time to get my blood flowing, and attempt some light arm stretches. Showering makes me dizzy and more exhausted. Eating can make me almost faint, although I’m certain I did faint after eating an Enchilada last month (thankfully not falling face first into my plate, although that would be a funny image no?) Last month, I bent down to pick something off the floor, and the next thing I knew, I’d fallen into the side of my wardrobe hitting my head hard. I don’t remember a few seconds of that, so I may had blacked out?!

Catching up with friends was already difficult, now it’s sometimes impossible. A lunch date out usually requires a few days of rest afterwards too, although if I feel well enough on the day (and if I feel safe enough to travel by myself), then I jump at the chance. I’ve been wanting to organise a trip down under to see friends in Perth (funded by my student loan, because, why not?) However, as soon as I started looking into it, my symptoms worsened – of course.

The cruel irony of my last comment, I’ve noticed that like with many things to do with my health, that the weather seems to have a huge impact. Dry, sunny days my symptoms really improve - I am definitely living in the wrong country!

I carry on as best I can, but it does get me down. Social media is both a blessing and a curse, a blessing in enabling me to stay in touch with friends, but a curse in the sense that I’m always reminded on what I’m missing out on.

I often can’t sit at my desk to write (although now I am, it’s the first time in a few weeks), so I have a bed desk. A beanbag lap tray desk, and my laptop. It means I can stay on top of my assignments, and the awarded software from Disabled Students Allowance makes the impossible, possible. Dictation software, software to read out books notes, amongst a few other useful things.

I have another appeal court date coming up for my PIP review with the DWP. I asked for a review due to my health worsening since my claim, but although they extended my award by a few years or so, they won’t award me the higher rate, despite having the evidence showing otherwise. It’s stressful thinking of it, but a positive thing in a way, because I get the chance to speak some supposedly unbiased people regarding my health issues. Whoever told you that claiming disability help/benefits is easy, is totally making it up…believe me. If someone successfully claimed it fraudulently, they’d have a very long wait for a payday!

Anyway, I’ve rambled on enough for now. I have a new blog for Shift.MS due out next month, which is about memory and MS. It sounds a bit vague, but I don’t want to go into too much detail now!

Thanks for reading.

Lots of love,

Jo xx