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

Covid – The shielding diaries of a chronic illness collector.

My blog posts from the first part of the Covid-19 pandemic condensed into a diary like post.

I made it back from Australia by the skin of my teeth, as Emirates were cancelling flights just two days after I arrived back.

Although I had a good time away, and I was glad to see my friends in Perth, I can't help but feel guilty.

Guilty because air travel has ultimately helped to spread the virus. Did I help spread it? I'd say with my immune system issues, I would know if I had it, as I imagine that I would have symptoms, but what if my immune system is better than I thought?

I did really think about whether I should leave for my trip, but I thought that as things didn't seem so bad at the time, that it was fine to leave. I feel now that maybe I was being quite naiive, and perhaps slightly selfish.

Selfish because I wanted to see my good friends in Perth, and because I wanted to be in the place that feels like home to me. Yes, I was selfish. Although I genuinely didn't think that the shit would hit the fan this hard while I was away. Perhaps I shouldn't beat myself up about it, but I can't help but feel an overwhelming sense of guilt.

We're living in a weird time, and I've said to others that it's like living in a movie.

Day five of isolation, and it really isn't that bad. I'm lucky to be able to work from home next week, which will give me a routine. I'm also lucky to have food in the house, and have a garden (so I can safely go outside). I know that some others aren't that lucky.

I was thinking the other day that because I've been used to isolating myself in the past, due to my immune treatment, that I may be better prepared for this than most. Which is partly true, although it is strange us all being in the same boat.

I think that times like this make us realise how lucky we are. Some people have never had freedom as we have, and our freedom is being limited for a short time for a very good reason. The day that we have our freedom back, it will be amazing. Just being able to hug loved ones, and being able to go out in public without the fear of infecting someone, will be the best feeling ever.

So that can happen quicker, please stop going out when it isn't necessary, and of course, wash your damn hands! ;)

Until next time...

Jo xx

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So, we're about to enter our seventh (?) week of quarantine, or in my case shielding.

I've quarantined before, so I'm used to it in a way, although it's never been for this long, and now everyone else has to do it too. Which is weird.

I received a letter from the NHS telling me to shield. According to my GP, I essentially I need to stay in one room by myself until all of this is over. However, in reality it doesn't quite work like that.

I share all common areas with my family, so I can't avoid other people, but everyone else in the house is shielding too, and none of us have come into contact with any other person since this all began.

Like many others, my emotions have been up and down, and my mental health hasn't been great. I feel that people don't like talking about mental health, as everyone has their own personal stuff to deal with (especially now).

To be honest, even if talking about this was the norm, I'm happier venting to a blank page in these times (kind of like free therapy).

I try to use mindfulness and CBD oil to help manage my anxiety, but I had to resort to asking my doctor for some anxiety pills to help me sleep, as I suffer from insomnia. They help knock me out, and I think they're helping me feel less anxious, although I appreciate that it won't be instant, and they can't be the only thing that that helps me.

I once had a course of CBT in the past which I found helps stop my anxious feelings from snowballing, and it helps now. Logical Jo can kick in and remind myself that I'm safe, my family are safe, and everyone else I know is as safe as they can be. I have a roof over my head, food in the fridge, and I'm very lucky to be able to currently work from home.

Sometimes the logic can't mute the feelings, but I guess sometimes you just have to feel them, and let them pass.

I have to say that not constantly watching the news has made a huge difference to how I feel, as has not worrying about what others are doing. I'm sure there are selfish people flouting the rules, but I like to think that they're in the minority!

I can imagine that some people must feel overwhelmed at all of the things that you can do in your spare time now. I'm intent on getting fit again, and trying to not turn into a fat alcoholic by the end of quarantine, but this week, I really had no interest in doing anything after work. I didn't work out at all, I just wanted to have a couple of drinks in the evening, and eat for no reason.

I decided to go with it and not to force myself into constantly being productive, which is something I tend to do (it isn't healthy).

People shouldn't feel the need to come out of this having learnt a new language or spring cleaning the entire house, I guess you need to do what you want to do. I'm feeling in a better head space than I was at the beginning of the week, so hopefully this week I can get back into a fitness routine, and get on with my studies. I also have the option of reading or playing my new guitar (as well as watching the whole of Netflix if I wish!)

I turned 33 on Wednesday, and had a lovely socially distanced birthday with my family. Originally I wasn't fussed about celebrating, but I'm glad that we did. It was nice to have something good to focus on.

I just hope that a safe and effective vaccine can be found, and those that can have it will, so we can all be protected and get back to some sense of normality (before I decide to change my hair colour again...or maybe change my image in a more drastic way? ;) )

Hopefully my next post will be something fun rather than this rambling post, but really this is just my version of therapy, so some of it is bound to be boring!

Stay safe and well all of you <3

Until next time...

Jo xx

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I decided it was time for a blog, as I felt like inspiration had struck, rather than forcing myself to write, it should be organic.

Since my last blog, not a huge amount has changed for me. Although I have started online CBT (Cognitive Behavioural Therapy), and I have a practioner who reviews my progress, then we chat once a week. I've only just started this, but I've found that it's been a nice refresher of the past CBT I had.

When negative thoughts or feelings come up, I can now try to drop them. I'm not 100% there yet, and I'm still (reluctantly), taking the prescribed medication, but it's a start.

One other thing that may change for me, is whether I'm in the Extremely Clinically Vulnerable group or not. I suspect not...

I belong to a group on Facebook for people who have had the same treatment as me. One post someone was asking who had received 'The Letter'. Some had, some hadn't. It didn't add up, as some people who'd had the treatment after me, hadn't received it (so their immune system is very likely to be lower than mine).

Then I read a post from someone who had been treated at the same hospital as me, and they said that after speaking to our treatment nurses, that everyone with MS in Sussex had received the shielding letter. After emailing them and my Specialist Nurse, they confirmed that I don't need to shield, but I am in the next category down (Clinically Vulnerable). I haven't yet had a letter confirming this, and I also need to hear from my GP, as maybe their opinion would be different.

In reality though, it doesn't make much of a difference to me. I can technically go out for an hours worth of exercise per day or to the shops, but the advice is to stay at home as much as possible. I've been lucky to be living with family who have decided to shield too, which has meant that we can be in the same room as each other. Aside from protecting me, it protects them too.

As restrictions are being relaxed, I wouldn't want to go out now. Especially if it's true that the infection rate (or the 'R'), is high in Brighton. I would absolutely love to have a socially distanced walk with a friend, but right now, I don't think that it's safe. I will wait. Even if I was willing to risk it, I wouldn't want to risk my families health...if I did risk it, would be a slap in the face to them, after they've given up their freedom to protect us.

I hate that my brother can't go out and see his friends, it's the summer before he starts University, he should be out, but he's stuck here. My sister also gave up being able to see her boyfriend (also to protect him too). My Mum can't see her parents, they can't see us.

I can imagine how hard it is for everyone, and I know how hard it is for someone who is stuck alone shielding in a flat with no garden (this was me after my last immune treatment in my old flat). For those who are in perfect health, with no restrictions, I know that it's hard for you too. Despite the differing situations we all find ourselves in, there are people that we long to see again.

From what I can tell from most people who post on my Facebook newsfeed are all following the rules. A friend posted earlier that just because BoJo has said that all you healthy lot can mix outside with five others from Monday, it doesn't mean you have to. I don't blame any of you to be desperate to get out and socialise (especially in this lovely weather), but I think if we were stricter, this would be over much quicker for all of us.

Personally, I'd have preferred a strict lockdown of at least four weeks, and I mean lockdown. As in, no leaving the house, at all, other than to get food and for medical purposes. Yes it's important to exercise, and just getting outside can help your mental health and clear your head, but exercise can be done inside for most... Just think, if we were as strict as other countries, we could be closer to a better life, and all of this bullshit could be nearer to being over.

Some could say that it's easy for me to say all of this, because I'm stuck inside anyway. If anything, after being stuck inside (although I realise that I am priveleged to have access to a garden), I should want the opposite. My thinking is, get this done and over with ASAP, so that we can hug our family and friends again.

The reality is, the ship has probably sailed with getting this under control, and we may have to live with this forever. Although who knows...

I've seen some people suggest that those like me with underlying health conditions should just stay inside until those healthy individuals in the community have Herd Immunity. From what I know Herd Immunity is safest with vaccines, and people can still die from Covid even if they seem in great health.

Also, what about the mental health of those with underlying health conditions? We don't know how long this will go on for, and if everyone else is other than us is able to resume some sense of a normal life, maybe the disease will still be circulating, and will it ever be safe for us to come out?

After having the treatment for my MS, claiming my health and my life back, I feel healthier than I ever have. My diet has changed, I exercise more, I feel healthy. I felt like I had more freedom, now I feel forgotten about by the government, essentially, just hide inside until we tell you not to.

I'm trying to improve myself and be positive in my lockdown, as I'm studying for my Maths GCSE (to obtain a better grade than before), playing my guitar, and trying to get into an exercise routine. Thankfully I can still currently work from home, which is a welcome distraction.

I will get on with it, but I just wish the government would actually get organised. Yes, they're doing a job, but not well (in my opinion). It may have been unprecedented, but other countries managed to get a better hold of this. No, Dominic Cummings was not in the right, and yes BoJo is most certainly a total moron.

Anyway, after that rant, lockdown highlights have definitely been virtual drinks. Some have involved Cards Against Humanity, and all have involved a lot of wine (of course). Also, it's been heart warming to see how much everyone gives a shit about everyone during this awful time.

Stay safe <3

Ciao,

Jo xx

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Yep, that's my title. Imaginative right? Titles and headlines have never been a strong point of mine!

Anyway, I felt like writing a short blog before bed, as despite being exhausted all day, my mind is whirring, and I know that I'm going to have trouble driting off tonight.

Since my last blog I've become less angry. I needed to rant on that day, and as my blog isn't meant to be sugarcoated, I wanted to stay true to form. I guess I've made peace somewhat.

Despite our differing beliefs, the majority of us are angry and upset at the situation we all find ourselves in. I don't agree with people who won't wear their mask or those who believe that Covid is a hoax, but I can't see any point in gettng angry at them.

The day I entered into an argument with a random stranger on Facebook, was a day where I was feeling fed up. My depression and anxiety has been up and down a lot - I was caught at a weak point. I don't regret it, as even though it was pointless waste of energy, I needed to vent.

I've been out a couple of times recently catching up with friends, which involved taking me completely out of my comfort zone. Out in public, once on the bus - I was terrified, which sounds ridiculous, but after being stuck inside for so long it's hardly surprising I guess.

I went at a fairly quiet time of day and I was surprised at how most people wore masks, and distanced themselves away from others, phew! I didn't need to turn into Sheldon and spray them with Dettol.

Going out the few times I have done have been really what I've needed, and I think that I appreciate that little taste of freedom so much more than I did before. Last night I made the most of it with some good friends, and rocked up back home around one this morning (it was worth feeling like a Zombie all day today).

I hope that you're all happy and healthy.

Ciao,

Jo xoxo 

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Yesterday was my nine year MS Anniversary - a pretty crap anniversary, but I think how it could have been worse, and how things have changed since. Life is actually alright.

I was twenty four years old in the doctor's office before starting work, jetlagged from a recent trip to the USA. My parents were with me for moral support, and thinking that MS was fatal, my Dad cried.

Being me, I went into work afterwards, and casually told my boss, who gave me a reality check:

"Jo...that's quite big news...I think you need to take the day off to absorb it."

I won't lie when I say that I went home and cried. My best friend came round that evening, and we sat in my garden chatting. I wasn't sure what to think, but I carried on as normal for a while.

I was thinking about that day yesterday, and I realised that I've been feeling quite unmotivated lately, and by lately I mean for the majority of this year.

Even before Covid, I've always taken on too much and I like to keep myself busy. This usually manifests itself in me being a workaholic, having a hectic social life, and trying to fit in either band practice or study (sometimes both), while somehow still finding the time to sleep.

It's only when something drastic has happened that I've been forced to pause and slow down.

I was sixteen when I had two jobs, whilst studying full time, playing in a band, and being a social butterfly. I only had two full days off a month. Looking back on it now I was definitely doing too much, but I was happy being that busy. Maybe I've always had a bad case of FOMO? I started to feel unwell not long after this with what I can recognise now as MS, but I didn't think it at the time. I slowed down a bit, but I was still busy (I just allowed myself off two days per week instead of per month).

The second time I had to slow down was when my MS started getting worse. I eventually left my job to concentrate on trying to get better, but I felt like I was losing control. Going from being so busy to sleeping constantly was a bit of a shock to the system. I felt guilty even though I had a pretty good excuse not to be productive!

In the need to be productive then, I'd started my Open University degree, and as this was part-time I felt like it was something I could handle. I'm still slogging away at it, deferring a couple of modules due to illness, but I'm getting there with it.

In feeling the need to be productuve in lockdown (despite working from home full time), I also signed up to study for my Maths GCSE again. I figured that neither should cross over much as I'm hoping to take my Maths exams in January.

It was either Maths or attempting to improve on my broken Portuguese language skills (I can handle greetings, food and drink talk, some swearwords and insults), but I decided that one would benefit me sooner than the other!

So, now I have study guilt x2. Although, why should I be guilty? I'd ask where this is coming from, and I can quite easily say that this is to do with my anxiety issues, heightened by the added anxiety of the pandemic.

Plus, during lockdown there seemed to be an added pressure to use your spare time wisely (maybe more aimed at those who weren't working). The pressure to learn a new skill such as a language, pen a novel or get fit seemed to be popular options. I had good intentions re getting fit, but unless lifting up a glass of G&T to my mouth counts as weightlifting, I've failed miserably.

I think that although I want to finish my degree, so that I can hopefully improve my chances of getting a steady job, if I need some time to myself to just do nothing, not only is it fine, it's healthy. 

My other forced pause in my life is one where most people had to pause in some capacity - the pandemic. Something which has fucked up a lot of things, but something which I'm trying to take something good from, which is that it's okay to stop and to take time out for yourself.

I say to hell with study guilt (or unproductivity guilt in general), and here's to self-care. Life is too short to be dealing with that pressure.

Since getting my life back with my last MS treatment, I've been trying to play catch up, and my FOMO was ignited once more, but taking this forced pause has taught me to chill out a bit (I need to try and remember this sometimes).

Until next time...

Jo xx

https://www.theguardian.com/us-news/2020/apr/24/productivity-in-coronavirus-lockdown

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It's been a while since I posted, and a while since I've felt motivated to, especially since life is still pretty much the same! Welcome to Groundhog Year!

 
I'm intending for this blog to put a fairly optimistic spin on our locked down lives, rather than being too serious (we get enough of that with watching the news, and living through this very stessful time).

 
It's weird to think that a year ago I had not long returned from a trip to visit my best friend in Portugal, and I was getting ready for a trip to Perth, Australia. Covid was in the news, but many of us (myself included), didn't realise that Covid would turn our lives upside down a month from then. How wrong were we...

 
The small window of freedom we had in the summer almost doesn't seem real, although because I've been shielding, I've probably been locked down more than most.

 
I really feel like we are living in a Black Mirror episode in some kind of weird purgatory, we see people in Australia and New Zealand living fairly normal lives - even going to gigs (the dream!) Although they have some sense of normality, they can't leave the country, and if they do, they have to quarantine for a fortnight upon returning. They also can't see their relatives in the rest of the world, so really life isn't normal for anyone.

 
Anyway, I said I'd try not to be too serious, and that paragraph was starting to lead on to something soppy, so I'll stop with that ;-)

 
I had the Covid jab last week, so soon I should be partially immune (yay!) Even though this won't be the magic bullet in resuming some kind of normal life, it's a start. I'm cautiously optimistic.

 
Having two autoimmune conditions (I have Thyroid issues, as well as MS now - lucky me hey), I was expecting to feel a bit crappy afterwards, and my immune system didn't disappoint. About an hour after I returned home from the vaccination centre, I felt dizzy and feverish. I'd taken a vaccination selfie about five minutes before that, which in hindsight was a terrible idea. I'd come in from the snow, with hat hair wet from the snow, skin flushed from the cold, and I looked quite peaky (hello fever face!)

 
It seems this is quite common with us MS'ers who have had the jab though, and even though I feel like I wasted two days in bed, it shows that my immune system was working hard to come up with some antibodies. My next jab is a few days before my birthday, so I know to book two days off work, and have an excuse to relax.

 
I'm hoping that by mid-May we can meet up with friends and relatives again. Yesterday I had a moment where I really missed everyone. Zoom, et al, is great, but it doesn't beat seeing people in the flesh. I think I may have forgotten how to hug too...

 
I've been dreaming of what I will do with my new found freedom (much like what I'd do if I won the lottery), and I'll be booking plane tickets to Portugal as soon as it's safe to do so, as well as a staycation in the UK. 

I think we'll all be partying - hopefully our freedom won't be short lived, and we can get on with our lives.

 
Stay safe, well and sane,

 
Lots of love xxx

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Well, a lot has happened since my last post, although somehow I still feel like we’re stuck in purgatory. If any of you have seen The Good Place, you’ll get what I mean – we’re living in a weird kind of continual hell.

A plague, lockdowns, climate emergency (severe fires, floods, etc), earthquakes, war (not that war has ever stopped sadly), and awful uncaring capitalist world leaders (still the same, but making our current situation even worse).

Despite my not so cheery introduction, there is some positivity mixed in with the negativity (yes, really ;-) )

To sum up six months, I thought it was better to keep it as brief as possible, by writing a list:

• -          Lockdown ended.
• -          Shielding ended (my anxiety piqued).
• -          The country opened up (my anxiety went up and down like a rollercoaster).
• -          I, like many others, am double jabbed (thanks Science and the wonderful NHS)
• -          I turned 34….argh! I’ll celebrate surviving this long, although I would love a time rebate considering our lives have collectively been put on hold.
• -          I started and completed a course of counselling therapy. Well worth the money, for some mental health maintenance. I’m well aware how lucky I am being able to afford this – thanks Mum for letting me continue living with you for the time being (cheap rent!)
• -          I’ve completed a degree, and a Maths GCSE. A 2.2 in BA (Hons) in Creative Writing and English Language, and Grade 4 in Maths (C equivalent). I now have free time again
• -          Our family pet Millie the cat was put to sleep in April at 13 years old.
• -          My sister adopted a kitten called Morgana in June….he’s brought some joy back into the house (he’s lovely...even when he bites us).
• -          It’s been wonderful to be able to see friends and family again, which was one thing I was looking forward to when I moved back from Australia…NEARLY TWO YEARS AGO!
• -          We finally had a family get together, our first since Christmas 2019 with all of us in the same place. It was awesome to have everyone together.
• -          My lovely Uncle Stuart passed away after a short battle with cancer. Due to Covid restrictions, we were unable to visit him before his diagnosis, and due to ongoing restrictions in the hospital, we were unable to say goodbye in person. It hurts. 
• - Before he passed, I made him a card saying goodbye, which had some photos for him to look at, with a pack of his favourite biscuits. It isn’t quite the same, but I did what I could given the circumstances.
• -          My final degree essay dredged up a lot of painful memories, as it was telling the story of my diagnosis with MS, and what has happened since.
• -          Despite the painful memories, it was an important reminder to me of how far I’ve come (especially important when I’m feeling low).
• -          A few years ago, I was so well, I could get away with not telling anyone, and although it was nice being just Jo, I’m going to be more open, as it’s important to try to break down the barriers of disability.
• -          I was accepted on to a PGCE Secondary English course, but with the current pandemic, I don’t think that it’s such a good idea to be in a classroom with a class of teens who wouldn’t have had the opportunity to be vaccinated, and with no restrictions in place.
• -          Even if Covid doesn't get me, our immune systems are going to be met with an onslaught of viruses this winter, so I’ll weather the storm, and prepare my flimsy immune system for next year instead.
• I felt sad deferring my place, as I’ll be 35 next year and I have a strong urge to get on with life, but some advice from my counsellor is pertinent here maybe you are where you need to be right now.
• -          I agree regarding the above. I’ll make the most of having a job, free time in the evenings (which is a weird feeling for me), plus spending time with family and friends.
• -          I also need a rest. Working full-time, whilst studying for a degree, and a GCSE was tough, while also trying to stay sane.
• -          I plan on studying for my TEFL part-time next year, so that I can teach English as a side venture for the time being (potentially online lessons for refugees, to help them settle in to the UK).
• -          One thing that the Covid situation has made me realise is how much social injustice there is in the world, not that I was unaware, but at my worst with MS, so was my mental health. I shut myself away emotionally from the outside world, maybe to protect myself in a weird way.
• -          Now, my teenage punk rock angst is back, but in a more mature, and focussed way (I think I can possibly construct and argument now without being a dick).
• -          I quit the Labour Party. Not that I’ve been able to participate in a lot of activism in person anyway, much of it due to being unwell in the first part of my membership, and the latter due to Covid. I guess I was an armchair activist?
• -          I’m now supporting the Green Party and environmental campaigns. I feel that both support how I feel about how the planet is in trouble, and the amount of social injustices there are in the world.
• -          I’ve often flirted with being a Vegetarian in the past, successfully being mostly meat free before, but now I’m actually doing it. We get our eggs from a community farm who grow biodynamic crops, and rescue ex battery hens, so I can have guilt free eggs.
• -          It has meant cooking a lot from scratch again, which is obviously good for me, as a lot of pre-prepared veggie food has soy or gluten in (bad for my Thyroid and my crappy immune system),

Anyway, we’re a year and a half into the pandemic, are we in the Good Place, the Medium Place or the Bad Place? Maybe it’s the latter and we’re in an episode of Black Mirror? No, I haven’t lost my grip on reality (yet), but living through Groundhog Day is weird.

I’ll leave it at that with my mammoth blog (so much for keeping it brief!)

I hope you’re all safe, well and sane.

Ciao,

Jo xx

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Hello and a very belated happy new year to you all :-)

In this blog post I'll talk mainly about chronic illness, and how it's been affecting me recently. It'll be more structured than my last post, and less of a mind dump!

As many of you might already be aware, I have MS, I'm also an Asthmatic, and I was fairly recently diagnosed with an Underactive Thyroid. The UAT and Asthma are fairly well controlled, the jury's out whether my MS is behaving itself or not, and there's a chance that I might soon add another autoimmune condition to my list. This is not a collection that I ever imagined myself having, but there you go!

Just some background info for context - I caught a cold in November, and then my MS flared up. I haven't been to work since. Cue extreme fatigue, a burning feeling in my left limbs, and bad brain fog. I also started randomly going bright red every day - a butterfly rash across my cheeks & nose, bright red ears, neck and chest. My fingers and toes would also go bright red, and it was nearly impossible to move the fingers on my left hand (think of a claw, that's my hand when this happens). Lately my left shoulder, knee and hip have been sore & swollen too.

I remembered that the weird redness had been happening in the middle of 2021, but as my Thyroid levels weren't well controlled then, I attributed it to this. I was also told I have anaemia in October, but they couldn't figure out why. My B12, Folate and Iron were all normal, although anaemia can also be attributed to some autoimmune conditions like UAT.

It's been very difficult to speak with my GP lately, but I managed to get them to issue me with some blood forms where they tested for Lupus, which was clear. Great news, but I am still unwell, so....what next? 

After jamming the doctor's phone lines again  the other day, a doctor called me and is referring me to see a rheumatologist. I'm hoping that they will shed some light on whatever is going wrong with me, although I expect a lengthy wait. CBD oil and Ibuprofen will have to do for the time being!

I started a call centre job at a financial company last September (which I've since quit), something which had good benefits, and I hoped would see me through until my teaching course at uni this year (I deferred last year due to our dear enemy Covid). Working in a call centre is tough, which I knew having done this kind of work before - but I found this was incredibly stressful. 

The department was understaffed due to the company placing a hiring freeze in 2020 which doesn't help when staff have moved on and there is high sickness. I found the work life balance was hard to achieve due to an unpredictable rota. I need two days off in a row to manage fatigue, and this wasn't always possible. Tough complaints were a regular feature, usually rich people throwing their toys out of the pram - which started to chip away at my soul (maybe I'm being a bit dramatic here, but you get what I mean!)

I applied for other jobs and I've been offered a more rewarding role via an employment agency. The pay is slightly less, but hopefully less stress, weekends off, and I'll also be helping vulnerable adults. I have a concern with the agency as they asked me to fill out a medical questionnaire, and then asked me if MS is an ongoing issue, but....with any luck I should be starting on Wednesday.

Before I handed my notice in at the call centre, I asked my boss if I could move to a job in the company with less stress, or if I could work less hours, and it was a resounding no. If I didn't have another job to fall back on I might have pursued the Occupational Health route or had to reluctantly drag myself back somehow.

One benefit of working for my previous employer was the health insurance, which I was reluctant to use as I see private healthcare as part of the problem with the NHS. What's the weird saying? Cutting off your nose to spite your face? Yes, that. Although I didn't completely boycott the health insurance, as I made the most of their CBT services to help with my anxiety.

I had my final CBT session after quitting, and the therapist persuaded me to have an appointment with their onsite GP via a video call. Well, he confirmed that I do need to see a rheumatologist, and was all ready to refer me via the medical insurance. I could have spoken to someone the following week, but my employment ended the following day. He said the NHS wait list is probably six months or more. Wonderful, but it is what it is, and the amount of stress was simply not worth staying just to be able to see a specialist quicker. I'm trying to focus on eating healthily, combatting fatigue, and trying to be happy in the meantime.

What I probably should do is stay off work for a couple of months, and focus on my health, but with the Statutory Sick Pay rate being so low (£96 ish per week), this isn't an option for me. This amount is the same during the qualifying payment for ESA (Employment and Support Allowance), and I can't be bothered with the stress of that right now, as I'm fighting the DWP for my PIP claim.

I applied for PIP (Personal Independence Payment), about a year ago. This is something which you can claim whether you're in employment or not if you have a disability. After my assessment in August they decided that I'm fine. The DWP focused solely on my anxiety problems, and totally skimmed the fact that I have MS. In their eyes, because my MRI scans showed no new lesions, I can't possibly be affected. They also used the fact that I had a telephone assessment against me, as I can talk, I must be fine. 

I've submitted something called a Mandatory Reconsideration, where another case handler will have a look at my claim. They managed to lose my letter and evidence, which doesn't instil much confidence in me. I had to send this again, and I'm now waiting for a response. They will probably deny my claim again, which will mean going to a tribunal. Anyone who thinks that getting any sickness or disability benefits in the UK is easy, then I'm afraid you're sadly wrong! 

This leads me on to Ableism and views regarding disabled people by others. I was lucky four years ago that I felt the best I have done in my life. I didn't need to mention to others that I have MS, not that I was embarrassed, but it was nice just being Jo, and not needing to think about my disability. Before that, I was very open about my disability.

Although I see why I did this, the pandemic has reminded me that I am vulnerable, and that it is okay to be vulnerable. When I've been at my best, when others have found out I have MS I often had comments like: 'It's great that your disability doesn't define you.' Which although this might be well intentioned, almost makes it seem like I shouldn't declare it. I feel that there is so much focus on always being positive, that if any of us have any problems it's sometimes seen as being negative. Like with the saying 'positive vibes only.' 

Don't get me wrong, we should absolutely spread positivity when we can, it could make someone's day, and lift them up. I see so many inspiring posts from friends on various platforms, and they make me smile. I guess the point I'm trying to make is if we need to talk, we should feel that we can speak to someone, and not feel that we're being negative if we have a problem. When we need to speak up, speak up (or in some cases shout!) 

With Ableism, the pandemic has been a stark reminder to me how common this is. For instance when you hear Covid death stats, and it's mentioned that most had underlying health conditions or they were elderly, some may breathe a sigh of relief, I don't. That could be me, that could be your friend with Asthma, that could be your uncle in remission from Cancer, it could be your Grandma, and it could be someone with an as yet undiagnosed health condition.

With the internet being the window to the outside world for us all, I think that this has especially been the case for those at risk. Although we need to stay away from being dragged into a rabbit hole - which I've done once (oops!) I simply commented on a someone's post on Facebook where Covid restrictions were being discussed, someone expressed their dislike of wearing masks, and I simply said that I couldn't understand why this was a huge imposition (medical conditions excepted). Well......I somehow ended up being called a fascist for saying that, but there you go.

I've also had to make sure not read comments in some news stories due to the amount of casual eugenics talk. Like if disabled people ate a perfect diet we would be fine, or the worst of them all is when people mention survival of the fittest. The latter is disgusting, the former might help, but it doesn't totally exclude us from disease. We have these conditions despite maybe having a healthy diet, and regardless, it is simply inhumane to just relent that vulnerable people somehow deserve to catch Covid and in some cases die. 

As we're now two years in to the pandemic, it's safe to say that there is some serious pandemic fatigue going on. This week in England our government decided that all restrictions will end next week. Why not keep face masks? Social distancing? Or working from home if possible? I know why Boris Johnson relented, it was purely to save his own skin, and appease many of the nasty party. I hate the Tories with every ounce of my being, and while I won't tell anyone how to vote, I hope that many will now see how shit they are at running the country, and their absolute disdain for everyday working class people.

I'll be honest with anyone reading this blog, I'm scared. I'm scared of how to proceed with normal life after the past two years. We've all had different experiences of the pandemic due to our personal situations, and some of us will be feeling more confident than others. Some may wonder what all the fuss is about, or some might quite simply not care at all. I've often wondered if I'm being over the top in trying to keep safe, after all, I'm triple vaxxed, I'm happy to use a face mask, and I'm currently working from home, but I'm high risk. I know that I am just surviving (like many of us are), and I want to live, but is the key to emerging back into everyday getting on as before? Or slowly inching back into normality with caution? I think it's the latter for me, as all that any of us need to do is what we feel comfortable with, whilst also having consideration for others.

Regarding inching myself into everyday life, I ended up buying a ticket to 2,000 Trees Festival for this July. This might seem like I'm going from 0 -100, but for me it's a goal to reach. 2,000 Trees is a small festival with some awesome bands playing. I also treated myself to a VIP ticket, which sounds a bit fancy for me, but I figure as I'm going by myself, it might be safer, plus it includes transport to the campsite, which will be good to help me pace myself - this is important with my health issues (and I'll have more energy to enjoy myself!)

We'll see if I reach my goal, I need to take baby steps and not rush into socialising. I also need to make sure to experience some small crowds before July so I don't end up having a panic attack!

Anyway, I'll leave it at that for this post. I had so much to cover so it's a long one! Thank you if you decided to take time out to read my post.

Stay safe and well all of you, Jo xx

Motivation provided by: coffee and Punk Rock - listening to: Green Day, The Longshot, Anti Flag, the Clash, Blink 182, Billy Talent, Rancid, Social Distortion.

Inspired by: chronic illness and our collective Groundhog Day.