Moving House, Leaving Home, Moving On.

As you might have guessed by the title I’m going through a big change in my life right now. Firstly though I want to say, I know I haven’t posted anything on here in nearly 18 months but I promise you it’s not for lack of wanting to. When something happens in the world, when there’s a issue that frustrates or delights me (mainly frustrates to be honest haha) I always start writing a blog post in my head but I can never actually turn that into a reality, simply because I’m not well enough.

My cognitive symptoms are at an all time high which makes doing anything like this extremely difficult. It uses up a lot of energy that I need spend on other things, things that are essential to maintaining my health and wellbeing. As much as it pains me, writing this blog has become yet another thing that has had to be sacrificed.  However, in the months since moving house was first brought up to me I’ve had so many thoughts and feelings that I have to get them out, I just have to.  So, here goes.

Me, my mum and my dad are leaving the house and city that I’ve lived in my entire life to move to South Wales, and the main reason for this is me and my health. There are other contributing factors; my mum wants to give up work, and my dad, well he just wants a change haha, but my health or rather lack of it is the driving force.  The guilt that this caused in me cannot be underestimated. The fact that my parents give up so much for me already, and yet here they are going further than I ever expected or wanted them to.

My initial reaction to my dad talking to me, merely about the possibility of moving, was grief.  I cried pretty much for three days straight. That may seem an extreme reaction, I mean it’s not like my parents would force me into it if I said no. The reason I had such an emotional reaction though was because deep down I knew, even then, that it was the right thing to do, but absolutely no part of me wanted to do it, and somehow I was going to have to reconcile that.

Although the idea of leaving behind the only house I ever remember living in, and 95% of the people I know was painful, the part that was terrifying to me was leaving the city of Bristol itself.  I’ve lived here all my life, which is nearly 26 years.  All my memories are here; primary school, childhood birthday parties, sleepovers, the houses where I used to play with friends, walking to school in the early morning sunshine, the wind, the rain, and the snow, going the corner shop on the way home, teenage house parties…they’re all in about 3miles.

The friends that share those memories have gone. They’ve grown up, moved away, graduated (some of them twice), they have careers, partners, they’re own houses.  I don’t know most of them anymore, not really, and they don’t really know me.  I can’t leave the house without my wheelchair and one of my parents to push me, and I only do that when I have a medical appointment.  To all intent and purposes I’m invisible; nobody sees me, nobody knows me, but I do still exist because of those memories. Neighbours see me occasionally, friends if they walk past my house might spare me a thought, people know I exist here. I know that might seem incredible sad, but it’s really how I felt.

The prospect of losing that, I felt like I would become that strange women that answered the door occasionally, or that people saw through the window but never spoke to, it would make me even more invisible than I am now. My home town in the only constant in my life, the only thing I can count on; my health declines, people are unreliable, I have no idea what my future holds, but Bristol will always be here and I will always know it.

I love Bristol, it’s so intrinsic to how I relate to my life and what sort of person I am. I’ve been too ill to properly engage with all that’s going on here for literally years, but I have so many things planned in my head for when I am well enough. I’ve imagined walking to the post box on the corner by myself for the first time and how big of a deal it would be despite the distance being so small, I’ve imagined sitting on the harbour side on a summers evening having a drink, I’ve imagined exploring all the new independent shops that have opened up in a new development just a stones throw from my house, I’ve imagined cycling along the path next to the river Avon underneath the Clifton suspension bridge, I’ve imagined how it will look the same but slightly different because of the years that have passed, I’ve imagined it all. What I did not imagine is getting better anywhere other than Bristol. On some level, leaving all that behind felt like accepting that I’m never going to get better.

Once that first wave of grief had subsided my pragmatic mind took over and I started considering the positives that would come from moving. A more accessible house would mean a bigger living space (I currently spend all of my time in either my bedroom or the bathroom), it would mean more independence (I could make a cup of tea for myself and fill my own hot water bottle), it would make caring for me much easier on my parents. Those things would make everyone’s lives better.

I also started the recognise the benefits of the elusive ideal that is “the fresh start”. I’m not same person I was before I got ill, I mean it would be weird if I was considering I was 16 haha, but what I mean is if I miraculously got better tomorrow, was able to go out and experience the world again with everything that entails, it would be impossible to pick up my life where it left off. As I said, most of my friends have moved away and those that are left I haven’t spoken to in years, where would that leave me? Inhabiting the places I once did, but with only the memories of my “previous life” (as I call it) for company?

I’ve been listening to the third Outlander book, Voyager, on audiobook.  There’s a passage where a character describes being away for over 10 years and coming home but feeling like a stranger, and that resonated with me a lot.  Obviously I don’t feel like a stranger in my house, but when I see people who aren’t my mum, my dad, or my sister…I do.  Well actually it’s a strange mix of feeling like a stranger and them thinking of me and treating me like I was when I last saw them, however many years ago. I’m not angry at people who do that, I think it’s the only way they can relate to me because my life is so upside down.

The more I thought about it the more I came to realise the reason leaving Bristol filled me with such grief and the reason I’ve been clinging to familiar places so hard is because it’s the only thing that stops me feeling like a stranger, the only thing that really connects me to who I once was now that most of my friends, my hobbies, my occupation (for want of a better word for studying) are gone.

I’ve reached the point now where I feel more at ease with leaving Bristol. Now that’s not to say I’m not scared out of my mind haha, but I don’t feel having constant reminders of the person I once was would be helpful to me moving forward. Almost every trace of that person has been erased in me, and maybe that’s something I need to accept. I’m a different person now, with a very different life to the one I imagined, but it holds no less value and I’m no less of person because of it. In a new place, where no one knows me I’ll have the space to figure out who I am now.

This summer will mark 10 years since I contracted Lyme disease, it’ll also be 10 years since I left school, so it seems serendipitous that this summer is when I’ll be saying goodbye to Bristol. Everyone around me keeps saying “it’s not goodbye, you’ll be back”, but I’m not thinking like that.  Unless I get a lot better I won’t be able to come back, and anyway I think it might be better to leave it behind, to leave Bristol as a time capsule of what was a pretty idyllic childhood and move on to the next stage of my life, whatever that may hold.

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2017 – The Year Of Waiting

Hey…remember me?

I know I know…I haven’t written anything on here in ages. Please believe me, it’s not for lack of wanting to. There have been many times when I’ve seen or read something that sparked an idea, but I just haven’t had the energy to translate that into me actually sitting down and writing words.

The second half of 2017 has been a white knuckle ride, which I’ve barely been able to cling on to at times. This has been well documented on my Youtube Channel (which you should definitely go and subscribe to, I’m really close to 100 subscribers and I post a new vlog every Sunday), but I want to talk through it here as well and reflect as we wave goodbye to 2017.

There have been 2 main themes running through the second half on 2017; pain and nausea. Continue reading

Turning 24!

So two weeks ago, I had my 24th birthday. I know I’ve talked on here quite a lot about how my depression spikes around Christmas’s and birthday’s, and so I often struggle. However I managed to largely avoid it this year, it was only the afternoon of the day before my birthday that I felt the black clouds descending, luckily it was only a passing shower, not a full on storm.

This was my 6th birthday since I’ve been chronically ill, 8th if you count the two years when I was definitely ill, but didn’t realise it, although I don’t in this case because I was able to celebrate my 17th and 18th relatively normally.

My birthday didn’t actually get going until about 5:30pm, because I had to wait for my mum to get home from work and for my grandparents to arrive before anything remotely “birthdayish” happened. I was quite worried because the trend of the few days before was me feeling okay in the morning, but then as the day went my pain steadily increased until by around 4pm all I could do was lay in bed in a dark room. Sure enough the pain was steadily increasing, and I didn’t know how I was going to get through presents, cards and chatting, but miraculously when I went downstairs the pain lifted slightly and I was actually able to enjoy myself.

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New Kitten & The End Of Year 1 – Treatment Weeks 51 & 52

Hello there,

Two very exciting things happened this week. Firstly, after a bit of a palaver, we finally got our kitten! He is wonderful, adorable and practically perfect in every way. Seriously, look at that thumbnail!

Secondly, I made it to the end of treatment year one! I posted a special video, and wrote a blog post talking about how I feel about it in more detail, so I’m not going to say too much about it here, but I do just want to say one thing.

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1 year treatment anniversary!

Hello there,

Well, here I am, 365 days after writing The Results Are In – I Have Lyme Disease. I think I’ve said this before about my time in treatment but I’ll say it again, it simultaneously feels much longer and much shorter than a year. When I’m laying in bed in lots of pain, unable to tolerate any light, the minutes seem to crawl by, but then I can blink and yet another month has gone past.

I’ve been trying to think how best to sum up this past year, and honestly I’m not sure I can, or at least not well…but obviously I’m going to try, or what would be the point of this blog post right?

Overall…it’s been tough.  The days where I’ve felt happy and confident that I’m heading in the right direction have definitely been in the minority. That’s not to say I haven’t seen improvements, the first 6 months, when I was on oral and then IV antibiotics, I definitely saw improvements in individual symptoms, but overall I felt worse, because I have terrible herx’s and side effects from the antibiotics. The last 6 months overall I’ve been feeling better because I’ve not been on antibiotics, I’ve been on a herbal protocol instead, but my symptoms themselves have been worse.

However I’m not sure the last 6 months really counts! haha. In January I came off a medication I’d been on for 3 years and all hell pretty much broke loose. I couldn’t sleep, my GI symptoms went through the roof, I was so nauseas I struggled to eat and even drink. So the last few months, my Lyme treatment has taken somewhat of a back seat, as I’ve just been so focused on trying to work out how to improve my GI symptoms, and unfortunately I’m still trying.

I feel like it’s been so chaotic that I’ve barely been able to catch my breath. I wish I could say I’d seen massive improvements and I was well on the way to feeling better, but I can’t. Although I’ve seen small improvements in some areas, in the main ones; fatigue and pain, I haven’t. Obviously that is pretty disheartening, actually no…it’s heartbreaking, but I don’t let my heart break every day. I have to keep wake up every morning, keep taking my dozens of tablets, do my best to support my recovery in others ways, because I just have to keep going.

I knew when I was diagnosed with Chronic Lyme disease that I would be in it for the long haul in terms of treatment, and I knew I wanted to keep a record of the big picture, not just the vlogs I’ve been doing so I decided to capture one second of my day, every day. I’m amazed I’ve kept it up for a year, and you can view the result right here.

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Haircut & Genetic Test Results – Treatment Weeks 49 & 50

Hello there,

This video is going up a week earlier than usual, because next week is my 1 year treatment anniversary! (Whaaaat!) So I’ve got something special planned.

This fortnight wasn’t that great physically. I’ve been struggling with the hot weather, it’s makes my POTS symptoms much worse, as well as making sleeping much more difficult, so all in all not great! haha.

Although some good things did happen; I got my haircut, had an appointment with my Lyme doctor where I got my genetic test results, and had my first and now annual diabetes checkup, which went well. So all in all it wasn’t too bad.

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Seeing an Endocrinologist 🏥 – Treatment Weeks 47 & 48

Hello there,

This fortnight has been kind of strange, because basically all of it has been spent preparing and then dealing with the aftermath of my endocrinologist appointment. I’ve been waiting for this appointment for about 5 months, so there’s been a lot of build up, plus because of how my last NHS specialist appointment went, I was really not looking forward to it, all of that affected my mental health way more than I was expecting.

It didn’t go as bad as I was expecting though, which is of course good, but I didn’t get any answers, although I’m kind of used to that by now.

All in all I’m just glad it’s over.

Continue reading