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