Argh, the overwhelm!

This year has gone by in a bit of a flash for me. When I started my MA, my intention was to post my work regularly, write a regular blog and promote them on Instagram. The first year was a bit more successful than this one; the workload wasn’t as intense, and the writing material more varied. This year has been something between part-time and full-time. Many more optional writing activities adding to the pile of study guilt already festering from last year.

I realised that I haven’t written a blog in what seems like forever, and I feel the need to write something which isn’t my dissertation. Much like writing my Morning Pages (the Artist’s Way), this helps me dump my thoughts down on paper giving me a sense of relief.

 

Some of you might already know but last year I was diagnosed with ADHD. I have both the inattentive and hyperactive kind. I’m expecting some eye rolls here or people who think that I’ve joined some sort of a trend, but the reality is that this is something which had affected me my entire life.

 

While I might not look like I’m bouncing off the walls all of the time, my brain is firing on all cylinders constantly, and you know what? It’s fucking exhausting. I thought that everyone has constant thoughts about everything whirling around their heads, but apparently this is not a thing (so my neurotypical friends tell me!) My GP also said that it might explain my insomnia.

 

Just for a bit of education, ADHD hasn’t been as well studied in women and girls as it has for men and boys, plus it can and does present differently in us. I also think that as women we are conditioned to be good little girls, to not complain, and to not cause a scene, so we have become experts in masking heavily to fit in. This explains me being such a people pleaser, something which I have been working on not being for the past year.

 

Traits presenting differently in girls and boys is the same with Autism. This is something I’ve also been referred for an assessment as these conditions can often go hand in hand, but I plan on cancelling this due to no benefit for me if I was diagnosed.

 

My ADHD diagnosis was almost a year ago, so I’ve had a while to mull it over. For me it was a relief as it helps me make sense of who I am as a person, and hopefully I can find a better way of dealing with things in life. I’m currently waiting to see if I can start medication for it, which I have mixed feelings about due experiences of people close to me. My PoTS medication might get in the way of this yet, so we’ll see.

 

Despite the relief, I have felt some sadness knowing that things I have struggled with have taken me to nearly forty years old to receive help.

 

I procrastinate so much that I freeze, unable to complete a task until the pressure is so great that I have to complete it (like with my studies). I’ve sometimes done very well with writing an important essay in four hours, and receiving nearly eighty percent  in marks. However, the anxiety and anguish isn’t the best. I had this during my exams for high school. I did very well in my mocks and not as well in the finals. This is executive dysfunction.

 

Managing my emotions growing up was a struggle, I was told that I’m too sensitive or too much, or that I talk too much (or sometimes not enough). When really overwhelm probably had a lot to do with this.

 

Lately, I’ve been writing my dissertation for my MA, although it’s great to be on the home stretch, I’ve made it harder for myself giving myself one less month to complete it… This is because I might be starting a PGCE in teaching next month, and there is an overlap on both. The PGCE will hopefully help me teach or tutor for a living, so I know that the stress should hopefully be worth it (pending my occupational health appointment). I will have a lot of help and support with this, including a reduced timetable, otherwise it wouldn’t be a possibility for me.

 

As my dissertation is my memoir, it’s dredging up some painful memories, so it’s taking me a bit longer than I’d like to write it. This all feeds into current health woes which I’m hoping will go away soon. I finally have an appointment regarding a tumour on my kidney at the end of the month, my GP said it doesn’t look cancerous, but it’s still a worry regardless (it will have been over a year for this urgent referral too, then I need to wait for a scan). My thyroid is also playing up again and is very underactive, it took my doctor’s surgery several months to realise that I needed more medication (yay). The lack of the right thyroid hormones can also cause insomnia and anxiety – the latter is probably showing in this writing!

 

On the plus side, my MS seems to be behaving itself (touch wood), and no more weird Lupus like symptoms for a long time too. I’m hoping that by October things will have settled down a bit, and I can attempt to relax a bit!

 

Despite any current stress, I can look back on the year so far as a positive one, and I’m hoping that things are changing for the better. I’ve had fun with old friends and new, including trips to France and Australia which wouldn’t have been possible a year ago.

 

As always, despite my struggles I’m always thankful for what I have. I know that I’m lucky to have supportive friends and family, as well as not living in a warzone.

 

I hope that you’re all doing as well as you can be in this scary and wild world.

 

Until next time,

Jo xx

 

                                                                    Procrastinating? Maybe...

So, I’m meant to be studying right now, but I thought it would help with my upcoming assignment if I could just write something. Ironically, even though I’m studying for a Creative Writing MA, I haven’t been able to do a lot of writing lately!

We have various readings and activities to complete as part of my MA, and I find that I’m not completing many of the activities (they’re not mandatory though, so I might be putting too much pressure on myself!)

I was convinced that my first assignment of my second year would be a failure, I wrote it when I was incredibly lightheaded due to PoTS, but I scored a 73. Maybe I should have more confidence in my work, and more faith in myself. Severe case of Imposter Syndrome right here!

I’ve found this winter more difficult than usual, possibly due to being so exhausted with managing multiple health conditions, and my studying. It’s felt like a bit of a grind! That said, there have been positives – despite having to cancel a few planned catch ups in December, I made it to some of them. I even made it out out on New Year’s with some good friends (rather than my usual drinking wine in my PJs!)

No new year resolutions from me, I always feel like I’m setting myself up for failure, and it places too much pressure on myself. Instead, I’m focusing on being as healthy as possible, and enjoying life. Acknowledging the negatives but focusing on the positives – without joining the Toxic Positivity club of course!

Focusing on the positives can be difficult in the strange times we find ourselves in. I’m half expecting to wake up from a very deep sleep or a coma, and all the craziness with the US dystopian nightmare to be just that…not real, just a nightmare. I feel for anyone in the US who is LGBTQIA+, people of colour, disabled folks, women, the working class, the poor, essentially anyone who isn’t a Cis-Het, rich, white man.

Also, of course not forgetting the bloodshed and ongoing genocide in Gaza – I’m aware of the ceasefire, but I don’t think that Israel are keeping to their side of the bargain… Hopefully we see an end to that soon, as well as the ongoing conflict in Ukraine and Russia.

To round this out, I have one positive to share. I had a successful doctor’s appointment yesterday; this is regarding my weird symptoms which may or may not be Lupus or a number of other random conditions. She took her time listening to me, asked for several different blood tests to be taken, and referred me for an addition test. It makes a change from the usual dismissiveness.

This is a bit of a rambling ‘blah’ post, but there you go. I hope you’re all as well as you can be, and that 2025 is treating you well so far. The end of winter is close :-)

Jo xx

 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

Cheers to 2024!

I know that for some people a new year means all change, but for some it’s just another year. I like to think of starting the new year as a chance of starting afresh, I think maybe I feel like this due to fighting chronic illness for so many years now, I like to set little goals – it gives me some hope on my dark days. However, this isn’t going to be a “New Year, New Me!” type post (I promise).

In my last post I was deciding whether I should start the PGCE course I deferred. Well, I sensibly decided to withdraw from the course, rather than deferring again, and prolonging being in limbo. When I applied in 2020 my health was much better than it is now, and I hoped my dream of teaching might be my life starting. Aside from a fulfilling vocation, I was hoping to improve my prospects, and hoping to move back Down Under permanently one day. In 2021 my Covid risk was too high, in 2022 I was too unwell, and this year no improvement. It’s a shame as this year would have been perfect in that our government had reinstated the training bursary for English teachers.

I had thought about potentially studying for a part-time Masters in Creative Writing, but I told no one until I’d been offered a place. My thinking was that I need a sense of purpose, and now I have the time, why not pursue something I enjoy? I want to be a writer, and I want to be held accountable by someone or something.

I had the option of a place with The Open University or Brighton University, but I accepted the place with the O U. Studying with the O U is very flexible, and I study when I feel well enough in the day. My aim is just to write and see where it takes me. It seems to be going well so far, with a supportive tutor and tutor group.

I’d love to be a published author eventually, and/or be a freelance writer/copywriter, but maybe add Proofreading/Copy Editing to the mix. Teaching isn’t totally out of the equation yet, it’s on the backburner, maybe I’ll have more to offer students with more experience in writing.

For 2024 I don’t have any resolutions as such, just a continuation of my hopes for 2023 - which is my health improving or not worsening. Any hospital appointments this year haven’t yielded any answers but have raised more questions than anything. So, my aim is to be fitter and stronger, have more fun, catch up with some friends I haven’t seen in too long (Perth friends, that includes you), and make it through to the end of the year!

Cheers and a Happy New Year to you all,

Love Jo xx

Lost.

What a difference a year makes! This post also falls on Disability Pride Month, and I’m hoping that this raises some awareness on my experience living with multiple chronic health conditions. I also have another guest blog due for Shift.MS soon, which will be covering the subject of Ableism – which I think is especially important to raise awareness of due to the amount of discrimination that disabled individuals face.

**Warning: as a year has passed since my last post, this is a long one!**

Since my last blog post describing how I was living my best life, my health has taken a decline again. Not that I felt 100% I the first place, just significantly less shit than before. I think that feeling fairly well from 2017 - 2019 was a brief respite from feeling so sick. Last year and in 2021 I burnt myself out working full-time (I didn’t have a choice), I stopped working again in August 2022, and now I honestly feel a bit lost.

Do I know what is wrong with me? Not really. Yes, I have MS, an Underactive Thyroid, and Asthma, but no definitive diagnosis on my new mystery condition. Any appointments with doctors over the past year have only raised more questions rather than providing any answers.

I saw a Rheumatologist last October, who had seemingly already decided on a condition before I’d entered the room, ignoring the photos and the symptom timeline I had with me. He went on a tangent about how everything can be explained by Fibromyalgia and MS. Even trying to tell me that MS causes joint swelling – it doesn’t (confirmed by my MS Specialist Nurse). MS can cause some joint pain depending on the nerves which have been affected, but nothing like I’ve experienced. It also doesn’t explain why I get a butterfly rash and a burning photosensitive rash when I go out in the sun (like I’m a vampire, haha).

As I wasn’t happy that my concerns had been dismissed, I sought a second opinion via the PALS (Patient Liaison Service) team. They emailed me with a response from another Rheumatologist, stating that as my Rheumatologist was “highly regarded”, a misdiagnosis was unlikely, and that I shouldn’t question them (it seems that some doctors have an ego problem!) This was frustrating as my complaint was that the doctor didn’t give me a chance to speak, and therefore didn’t take into account my new symptoms, plus the recurrence of old ones.

At this point I gave up, as quite honestly, it is both mentally and physically draining having to fight with medical professionals when it’s already a struggle to even get up in the mornings. I decided to focus on feeling as well as possible, so I booked to see an Osteopath and a Pilates Physiotherapist. The Osteopath thinks that I am very Hypermobile (this explains why sometimes I feel like my hip is nearly dislocated, and I need to loudly click it back into place!) Hypermobility can cause pain in my joints, but it doesn’t explain the swelling, and he encouraged me to speak with a Rheumatologist again, as well as speaking to my GP regarding Hypermobility.

I decided that I’d seek a second opinion from a private clinic, thinking that if you’re paying a doctor, then they have to listen to you. (Thanks to my Dad for helping me with funds it was possible to do this!)

The doctor was very thorough in going through my medical history, and examining me, but the conclusion was Fibromyalgia again. Which I accepted, but I asked what could cause the joint swelling, which he admitted he has no idea what is causing it. All my symptoms point to Lupus, but it isn’t showing on blood tests. Although it’s rare for it to never show up, this can happen. Looking into it, it can also take years to show up for some people, so maybe this will be the same for me.

My GP agreed to refer me to a Dermatologist for the rash, who I saw back in May. The Dermatologist thinks that I might have a rare sun allergy (Solar Urticaria – apparently less than 1000 people worldwide have this condition). It typically causes a rash, hives, dizziness, nausea, and headaches. However, she also admitted that this doesn’t explain the joint swelling, and that I might end up being diagnosed with an autoimmune condition like Lupus or Rheumatoid Arthritis further down the line.

The appointment wasn’t a waste of time though, as the Dermatologist referred me for a light test at a hospital in London. If this confirms her diagnosis, then I’ll be able to have some sort of treatment, some of which is also used to help patients with Lupus. So, even if I don’t get the correct diagnosis, maybe I will get the outcome I need.

I’ve also been waiting since March 2022 for something called a Tilt Table Test, as sometimes when I get up I suddenly I feel very dizzy, to the point where I feel that I might faint. I was sent for an urgent ECG last year, although they had me lying down for the test so it showed that I was fine (my issue is when I’m upright so I think that the test was pointless to be honest!)

One good thing that happened health wise is that my latest MRI Scan showed no new lesions, so no new disease activity since June 2016 (which is definitely something to celebrate!) MS still affects me with old symptoms recurring, but as long as I don’t get any new ones, I don’t need to worry.

Now it’s just a waiting game whilst trying to get on with my life as best as I can.

I’ve been able to have some fun in the past year, and I’ve taken a few trips when I haven’t felt too awful. It does involve plenty of rest for me before and after, but it’s been worth it being able to enjoy life every now and again (having to shield in the first part in the pandemic also took that away for a while).

In terms of getting on with my life, some of you might know that in 2020 I applied for a PGCE place at university to teach English, and I was accepted on a course up north. I was due to start in September 2021, but due to being in the high-risk category for Covid complications, and no vaccination programme for under 18s at the time, I decided to defer. I also had concerns due to having a serious autoimmune condition, and herd immunity for common viruses being super low (being in university and high-school settings I think are a breeding ground for germs at the best of times!) I had to defer again last year as my health had worsened, and with everything I’ve had to deal with health wise, I’d almost forgotten about my place for this year.

A few months ago, I was weaned off some pills which help with anxiety, and also apparently helped with Fibromyalgia pain (Nortriptyline). I found that they made my brain fog so much worse that they weren’t worth it. My MS Nurse also asked my GP to prescribe me some pills which help with fatigue. I’ve found that stopping Nortriptyline and starting the anti-fatigue pills have definitely helped. My brain fog is still there, and I’m not full of energy, but I’m finding that I’m able to focus more, as well as being able to do a little bit more.

This coincided with when I heard from my university regarding teaching placements and applying for help for my disability. I’ve been thinking about whether I’ll actually be able to take up the place or not.

I’ll have the following help:

- Disabled Students Allowance, which will pay for things like specialist equipment, and taxis on days where I’m too fatigued to drive or get the bus.

- Maintenance loan top up due to my disability.

- Help from the university’s Disability Support Team, which includes allowing extra time for essay extensions for instance.

- A tax free £15k bursary (paid in ten instalments). This is available to me as I’d be studying to teach a subject where teachers are in demand, so not disability related.

All of the above seems like now is the best time for me to study this course, especially as the bursary for teaching English has just been reintroduced this year.

However, my situation is different from when I initially applied in 2020. I’m concerned at how I will cope with how fatigued I currently am, and the amount of pain I’m in on a daily basis. I can manage the pain with my Cannabis prescription, but I don’t think that taking strong CBD oil is feasible with my teaching placements.

I also don’t want to commit to a contract on a lease for a flat or student accommodation in case I need to return to Brighton due to illness. Some of the student accommodation requires committing to at least one year, and if you need to leave in that time, you’re still liable for the rent.

Plus, going from zero to one hundred in terms of my daily activity. Now I’m getting plenty of rest, pacing myself, seeing friends when I feel okay, etc. Then I’d go to getting up super early, studying at Masters level as well as teaching, with the lesson planning and marking of assignments that comes with it.

Can I do it? Is now a good time? I don’t know. I’m fighting against the urge to get on with my life, but is now the right time? Or does getting on with my life mean taking it slower and heading towards a different path? I know that gaining the qualification and completing the ECT two years would open up my options of moving elsewhere (my aim is to move somewhere warm and dry which is better for my health).

I also have a plan b, which is to finish my Proofreading course, progress to Copy Editing and Copy Writing. Maybe one day add TEFL teaching and IELTS tutoring into the mix. One way or another, I could go self-employed, with various skills and qualifications hopefully I can make a living from it. I also want to continue with my volunteering with Shift.MS, and have some time to be able to write a book (“one day” as all writers say!)

So, yeah, I feel lost. Maybe I need more time to figure things out. I’ve been through a lot in the past couple of years, I should probably not put so much pressure on myself. Any advice is welcome!

I’ll leave it at that, as the word count is pretty big! Thanks for reading :-)

Lots of love,

Jo xx