10 Tips to Cope in Lockdown

1. Plan a routine – but don’t be too hard on yourself if you don’t always stick to it. When so much feels out of our control, having a routine can help our days feel like they still have some kind of order to them. If you're working from home, work out a basic structure for your mornings, afternoons and evenings. Make sure that you're not working too much, for too long, or forgetting to take breaks – and don't forget to schedule some enjoyable activities into your days and weeks, too!

2. Try to maintain some balance. Not having a social life to counterbalance your work life is mentally tough. Avoid burnout by trying to find balance elsewhere – for example, by taking part in hobbies or treating yourself.

3. In other words, take some me-time! I know it’s hard when you’re limited in what you can do, but spending all of your time working or doom-scrolling on social media will suck the life out of you. Make a list of the things you enjoy doing (taking government guidelines into account, of course) and make! time! for! those! things! It'll give you something to look forward to and keep your spirits up.

4. Stay connected online. When you can, that is. Don’t put pressure on yourself to constantly be available if you can’t be (whether that’s because you’re too busy, too tired, or just too deflated). But if you’re feeling lonely, reach out – whether that’s via video call or just with a simple message. Most of your loved ones are probably feeling the same way, so they’ll be glad to talk to you.

5. Make to-do lists at the start of each day. With the world so upside-down and jumbled, I find that my brain often ends up pretty jumbled too. To-do lists will help you to keep on top of things and avoid getting overwhelmed when trying to remember it all. If you want to be even more organised, listing tasks in order of priority is something that always helps me to stay on track.

6. Make “ta-da” lists at the end of each day. This is a list of all of the things that you’ve achieved in your day. These things don’t have to be work tasks or typically “productive” activities – they could be as simple as eating three meals a day, getting enough sleep, or treating yourself to some me-time. Celebrating your achievements is just as important as setting yourself goals!

7. DON’T beat yourself up if there are times that you feel like you “haven’t achieved much” in your day. Just making it through a crappy day is a massive achievement in itself. Seriously. You’ve been living through a crisis for almost a year now. Give yourself a pat on the back.

8. Take a step back from focusing on the things you can’t control. Yes, I’m talking about politics and pandemics. If reading negative headlines and online debates is affecting your mental health, protect your emotional energy by trying to avoid them as much as possible. The block and mute buttons are your friends.

9. Focus on the things you CAN control. Try to work on them little by little. When you’re feeling powerless, it’s important to find the things that you do have power over.

10. Remember: You’ve got this. And on the days that it feels like you haven’t got this, that’s okay too. These are just tips to help you if and when you feel like they’ll help. Handle this however you need to handle this, and know that however you’re feeling or coping is valid.

New Year, New Me(-ish)

Guess who got a walking stick?! (Spoiler alert: it's me.)

For a long time, I was scared that getting a stick would mean I’m “letting my disability win” – but then I realised just how ridiculous that is. I would never think that of anybody else, so why would I believe that about myself? By getting a stick, I’m doing the *opposite* of letting my disability "win". Mobility aids are empowering. They don’t make you more disabled; they make you more able. And although I know my disability doesn’t make me a lesser person, living a life with limits is, undeniably, pretty hard at times. This stick will help me break down some of those barriers. It doesn’t change who I am. In fact, it gives me back some of the freedom and independence that I used to have.

I should admit that I struggle with the word 'disability' sometimes – but not because I think it’s a bad word. I don’t think it’s restrictive; I think it’s freeing. Acknowledging that you have certain limitations allows you to get the support that you need to live your life with less limits.

My struggle with the word 'disability' is that I often don’t feel “disabled enough” to call my difficulties 'disabilities', to be a valid member of the disability community, or to use mobility aids. I have what's known as a dynamic disability. In other words, my ability fluctuates. There are days where I can function with a lot less trouble. It might be tougher, more painful and put more strain on my body than the average person’s, but to an outsider, I look fine. But there are also days where I struggle to get out of bed, my legs won’t co-operate, I can’t keep up with anybody... Sometimes, I lose my stamina altogether. I can’t walk for as long as I used to, or as easily, quickly or strongly. So why not use some extra help when I need it? Many people with mobility aids don’t need them all the time, but that doesn’t make the times that they do need them any less valid.

After one tricky day out too many, I finally decided to get myself a cool, floral walking stick from WalkingSticks.co.uk. (Sticks can be an aid AND a cute accessory, after all – right?!) I won’t use it all the time and I don’t know whether there’ll come a time when I don’t need it anymore, because I don’t know what the future holds for me. But for now, I know that – thanks to my stick – my future holds less difficulties and more freedom… and I’m SO excited about that.

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A Long-Overdue Surgery Update

If you follow me online or have read my blog before, you might already know that I had major spine surgery at the end of 2017. Before the operation, I wrote a blog post explaining my situation here, but I’ve not posted much about it since. Truth be told, I was hoping that I could come back in 6 to 12 months saying that the surgery was a success and that I’d recovered well. But unfortunately, that just isn’t the case. Not only did I not get better, but I ended up getting much worse.

I always knew that this was a risk. I’d read all the horror stories. In fact, they terrified me so much that I very nearly didn’t go ahead with the operation at all. But I guess I just had hope. Hope that I’d be one of the lucky ones.

It was a hope that didn’t come true, though – and now I have to work on coming to terms with that.

My weeks are split between “good days” (2-4 on the pain scale), “okay days” (4-6 on the pain scale) and “bad days” (7-9 on the pain scale).

On a good day, I can get on with most things and do a decent amount of walking. I’m usually quite a bit slower than most people and it’s hard, but I can do it. (I’ll normally crash afterwards from exhaustion though, and will probably be in pain for a few days after. It’s kind of like a full-body hangover.)

On a bad day, getting out of bed is a huge struggle. Walking and standing is absolute agony. It’s hard to get even the most basic of tasks done; I’ll often skip meals to avoid cooking; I hobble around with a limp any time I am on my feet; and I’m constantly exhausted. I can’t even settle into a comfortable position in bed, I can’t concentrate on anything like a TV show to distract myself, and I certainly can’t get off to sleep to nap the pain away.

Ironically, the pain isn’t in my spine, but instead is in my left leg and foot. Pin-pointing the issue has been a hell of an ordeal in itself, though. Recovery from major spinal fusion surgery is messy and scary and uncertain. The recovery can take one to two years in total, so at first, it’s hard to know which symptoms you should even worry about, or what could be causing them.

Having my spine moved meant that my hips, legs, and – well, basically the entire alignment of my body – was also moved, so there was a lot to adjust to. When I started learning to walk again, I noticed a problem pretty much straight away. I walked with a limp in my left leg, my left foot would click every time I took a step, and they'd get sore and tired very quickly. But my entire body was in pain and experiencing weird sensations and pains at that point – that’s just a standard part of the recovery process... So, if I’m honest, I didn’t think much of it at all.

However, as I recovered more and the pain in my body lessened, I noticed that the problems with my leg and foot stuck around. Unfortunately, though, figuring out what the problem actually is has been a huge struggle.

After spinal fusion surgery, you’re supposed to have four follow-up appointments:

• a 3-month follow-up

• a 6-month follow-up

• a 1-year follow-up

• a 2-year follow-up

Because I was still very much in the recovery period for my first two follow-up appointments, the specialists told me to just keep an eye on the pain and see how I was doing by my 1-year follow-up appointment. He thought the pain may well go away when my body fully recovered.

It didn’t, though. In fact, it just continued to get worse.

Despite endless chasing up with the hospital, I didn’t get my 1-year follow-up appointment until I was 2 whole years post-op (last October). By this time, my leg was causing me so much pain that I’d genuinely consider getting it amputated if somebody offered. I was referred for a CT scan to check whether the metal hardware in my back was compressing any nerves, and am now on the waiting list for a couple of other tests. I also had my body assessed by an osteopath this year, after my specialist told me it would be safe to see one as long as they were gentle.

The osteopath found that there is a lot wrong with my left leg and foot, as well as the left side of my pelvis. The weight-bearing parts of my body have been hugely affected by everything being realigned, which is why it hurts so much to sit, walk, or stand. I have a lot of tightness in those areas, and the problems she found with my body are essentially problems typically found in athletes, because basic things like walking and standing put my body under the same strain as a normal person would be under from doing intense physical activity.

I finally received one diagnosis, too – a foot condition called plantar fasciitis. Left untreated, this can get severe, chronic, disabling and cause further complications, which explains why my pain and difficulties have consistently gotten worse over the months/years.

Of course, I wish with every fibre of my (dysfunctional) being that this was a positive update. I wish I could say that I had the surgery, recovered, and it’s all over. But this is my life now, and I’m starting to try and accept that.

The physical pain and difficulties have also obviously caused a lot of emotional pain and difficulty, but I’ve started therapy this year to try and work through everything as best I can. Writing has always been something I’ve done to process what I’m going through, but:

1. This has taken a long time to start accepting (or even understanding, given how long it’s taken/is taking to get answers)

2. Writing as a hobby has fallen by the wayside a lot since my operation, because finding the physical and mental energy to sit and write something is a lot trickier

I really do want to start blogging more about my experience with everything, though – mentally and physically – to process, to offer some insight into life with chronic pain/health problems, and maybe even to help someone feel less alone if they’re going through something similar.

Writing has always been my outlet, and I think I need it now more than ever.

I hope you’re all safe and well.

Love,

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