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It?s only when bad things happen or when things get taken away from us that we realise how much we take things for granted. I started with my chronic pain in June 2012 and struggle to do some everyday tasks that people don?t even think about.
Chronic pain affects everyone differently depending on what that pain is and what causes it. For some, my list may seem pretty pathetic; to others it might be very surprising; and maybe even inspiring. The main thing is that we do not judge people for what they can and can?t do, and not compare each other?s abilities (unless it is for positive reasons of course). And of course I am not after any sympathy. This post is just a simply way of explaining more about how my pain affects me.
My chronic pain
I get my chronic pain when I sit down, or suffer secondary symptoms when I stand or lie down too much. I could easily keep this blog post short and sweet by saying that I struggle to sit. But if you?re a regular reader of my blog you?ll know this already. If not you can catch up by reading these posts (or why not subscribe in the box below to get notified when I publish new posts).
Instead, I am going to write about the everyday tasks that involve sitting that I struggle to do.
Eating my meals
We generally sit down to eat, so for me this is painful. When I use my coccyx cut-out cushion it can help me sit for longer before the pain kicks in, but I don?t always have this with me. At home I always use it when I eat my meals on the sofa or at the table, but even then, trying to get comfy and pain-free is challenging.
When I go out for a meal some seating is a definite no-go for me. Wooden, metal or hard plastic seats cause me a lot of pain and mean that I can only sit for a very brief time. If I do sit on these types of seats, then I either use my cushion (if I have it) or have to lift my pelvis upwards so that there is no pressure on the base of my back and coccyx area. I can only do this for so long before I start to get other pains elsewhere (my secondary symptoms, as I call them). I try not to do this as often as I used to as I am causing damage and more problems by sitting abnormally.
Whenever I settle on the sofa I use my coccyx cushion but after so long I?m in pain. I can cope with it for longer these days (I think this is more a mental thing), but sometimes the pain is so intense that I have no choice in having to lie down. Thankfully my partner is very understanding and she allows me to take over most of the sofa. What with me, and our to Westies who often join in us for family snuggle time, she ends up with very little room.
Having my haircut
I always have my friend come round to the house to cut my hair. I can use my cushion on the chair and she always tries to cut it as quickly as she can because she knows I struggle with my pain. And because she knows this, I can be myself. I don?t have to explain to a stranger about my pain and hide when I?m in agony.
Before my operation to remove my coccyx in 2015, I had a list of things I wanted to do if the operation was successful and I was no longer in pain. At the top was to go to my friend?s hairdressing salon and get my hair done properly – washed, cut, styled, the works. Unfortunately this never happened.
Going to the dentist
I?m not a huge fan of going to the dentist, never have been and never will be (I bet there are very few people who actually look forward to it and enjoy it). But when you add my chronic pain to the mix of getting in that dentist chair and someone poking around in your mouth, then there?s even more dread.
I never take my cushion because it is too wide for the dentist chair, and would take up too much room on some of the waiting room chairs when it is busy. Plus, I have enough to think about and focus on without the added anxiety of what others think about my cushion. This anxiety can cause me to tense up which always makes my pain worse. I talk about this in detail in my blog post Surprising symptoms of chronic pain: anxiety.
Going to the cinema
My partner and I absolutely love going to the cinema. It?s something we used to do a lot in the early days of when we got together. Now, I can only go if the seating involves sofas, or reclining chairs. But even then, I?m never pain-free. I feel like I?m constantly fidgeting and disturbing other people. My partner is brilliant as always and lets me lean on her to take the weight and pressure off my lower back to help reduce my pain. And when I can get comfy, then the escapism of watching the film is a great distraction.
My close friends all know about my pain, and understand (to some degree) how I struggle. Despite this, it can be very difficult to get comfy on chairs or sofas I?m not used to. They?re often very good and just tell me to lie down, use cushions, or stand if I need to. But this is easier said than done for me. I always feel the odd one out, a little uncomfortable? mentally, and can never quite relax. Stupid, I know. I just don?t like drawing the attention on myself.
More often than not, when I?m visiting friends, I?ll have a few alcoholic drinks and this always helps me to relax – even my physio confirmed it. I’m not a heavy drinker at all, and I certainly don’t encourage it, but every once in a while it really does help me.
Working at a desk
My day job involves desk work, but I?m lucky to have reasonable adjustments in place to allow me to work as comfy and pain-free as possible. I have a height adjustable desk which I use for both standing and sitting, plus a coccyx cut-out chair. I used to stand all day and work, but this caused so many other aches, pain and problems, and can just be as bad for you as sitting all day. ?I?m now encouraged to mix between standing and sitting and to take a break every 25 minutes to keep moving about as much as I can. Everyone should be encouraged to take a break and get away from their desks, not just those with chronic pain.
Sometimes I use my desk, or the dining table to do my blog work. I often do it lying down using my phone, but sometimes I feel more inspired and focused if I sit at the table. Of course I use my cushion, and take regular breaks, but if I get up early and do my blog work first thing, I find I can manage better as my pain gets worse throughout the day – it seems the more I sit and the pressure builds up, then the pain gets worse. It?s all about pain management, doing what I can, being sensible, enjoying what I?m doing, being and feeling productive (which is very important for me), and releasing those endorphins doing something that I absolutely love.
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Sitting on a public bench
Sometimes I wish I could just grab my Kindle, go for a walk, and then settle on a park bench and read my book. I used to love doing this when I was younger. Now it would mean taking my cushion out on a walk with me, which isn?t practical as it is very big and bulky – and embarrassing.
Having a picnic
I’ve always enjoyed packing up a lunch for school and for work when I used to go in to the office. I just love the feel of a good packed lunch box, especially if it?s got separate compartments for all my little food bits (I’m a bit of a compartments/pockets geek).
Having a picnic is similar except it gets you outdoors, and settling with a meal with a view is quite liberating. But getting comfy and pain-free to eat that meal is extremely hard for me. I can lie down on my side, but it?s hard to eat. I can sit and lean forward but this gets uncomfortable very quickly. It?s also hard to get back up again as I have to put some weight on my coccyx area to get in a position to lift myself up. With my cushion, things are easier, but yet again it is too bulky to carry out on a walk ?- along with my rucksack and all the food.
Chilling in the garden
When we have sunny weather, I love to relax in the garden with my family and a good book. I’ve done this quite a lot recently and have talked about it in two of my #FridayFive Gratitude posts – 11 May and 1 June. It’s not always that easy though, as sometimes I just cannot get comfy. I have a recliner garden chair but cannot use it without my cushion; and even with my cushion I struggle to settle for any length of time or I get settled but am in pain. Sometimes the only way of getting comfy is lying back in my chair but then I can’t hold my Kindle for long to read my book. Most of the time I end up falling asleep. This isn’t always a bad thing (when I’m asleep I’m not in pain at least) but before I know it the sun has gone from my garden and the day is over.
If you have chronic pain, what things do you struggle to do and how do you get by and cope as best you can?