Curing chronic illness boredom

Being at home all day is an actual struggle. There’s nothing worse than staring at the same four walls all day, every day. Often made even worse by people saying stupid shit like, ‘I’d love to have your life’ ‘it must be so nice to not have to get up and go to work’ etc. Fine mate, I’ll tell you what, let’s see how you feel waking up every single day in pain, feeling nauseous, being constantly tired, with stomach cramps from hell and that’s just part of it, let’s see how you get on 🙃.

Here are a few of the things I personally use as both pain distraction techniques and things to keep me busy so my minds not going insane. Focusing on something really helps me during a manic episode, it takes my mind off me wanting to self destruct.

1. Jigsaw puzzles. Sounds boring and like something that just old women do, but I absolutely love doing them. It keeps my mind active and it’s also pretty good to keep my mind from focusing on how much pain I’m in for a short while!

To increase difficulty levels get a cat. Mine loves to pull it apart.

2. Reading. Okay so I can’t always read because my mind doesn’t want to focus. I love a good book but I also love a good trashy fiction novel I don’t have to fully concentrate on. I have an array of books that’s focus level dependant (obviously once I start one I have to try and stick with it). From classics, to self help books, to the absolute bizarre.

These are a selection of my most recent purchases.

3. Painting. As you are about to see I’m no Picasso. I just find brush strokes very soothing.

Shit art all the way!

4. Sequin art. Turns out when you’re in a lot of pain sticking pins in things works wonders to take your mind off it.

Here’s one I made earlier..

5. Pilates/yoga/stretching/any exercise. I know not everyone can do a lot of exercise and I’m not advising it for everyone but honestly a little bit goes a long way for me personally. I feel so much happier, full of endorphins and like I’ve achieved something!

6. Animals. Finally if you have a pet, they can really be the best therapy. I feel like my cat can sense when I’m sick and always comes and sits with me, giving me some much needed comfort and attention. Plus they never judge when you can’t get out your blanket or your bed. She’s saved my life a few times by just being there and calming me down so for her I’ll be forever grateful 💕

Love her more than life itself.

Gran Canaria, Meloneras

I’ve recently just got back from a family holiday to Gran Canaria which was amazing but was obviously not without it’s problems. I highly recommend going with family/friends/partners who fully understand your illness in depth and what can go wrong. There’s nothing worse than being unwell in a foreign country and having no one to help you out. I always end up taking at least one trip to the pharmacy or doctor, because I’m fucking tragic, this time it was for pain patches which are literally 10 times better than anything you’d get over the counter here. I meant to bring some home with me but left it last minute and the pharmacy was closed.

Flying is never great when you have joint problems as being cramped in a small space unable to move about, for me personally, causes a lot of issues. It’s a 4 hour flight so for starters there’s the pain side of things. My hips are bad and holding them still for too long or sitting in the wrong position causes so much pain, that by the time I get off the plane I’m struggling to walk on my own without my stick or a crutch. We paid for extra legroom seats so I could move about a bit and stretch out. This is great, however, these seats are usually near to an emergency exit and if they see you have reduced mobility they won’t allow you to sit there. On the way out we had no issues, but on check in on the return flight they spotted my crutches and said we may be asked to move. This resulted in me stealthily putting the crutches as small as they would go and sneaking them on. We were walking as normally as possible for three people walking too close together with the bloody things wedged between us. Luckily it worked.

Apparently if you can’t eat gluten, on some planes, you’re just expected to starve for the duration of the flight, so I strongly advise taking your own food or eating the lovely overpriced food in the airport. I’m not sure with other airlines but all Tui had was a tiny bag of popcorn, thanks guys! If you’re like me and need daily laxatives I don’t advise taking them the day before or the same day you fly as no one wants to be fighting to get in one of them small cubicles in a hurry, or stinking out half the plane haha. Sometimes it literally just can’t be helped, my bowel randomly kicks off, but I always try my best to reduce the risk of that situation. For my irrigation system the hospital issued me with it’s own ‘passport’ to make sure we got it through without a problem, also tablets kept in the boxes so they can see what it is you’re taking and you don’t look like a smuggler. I clearly look like one anyway as I always get my hands and hips swabbed for no reason haha.

It seemed the best idea to get a taxi to the hotel from the airport avoiding sitting for hours on one of them stupid transfer coaches that wait for what seems like an eternity for other flights to land.

We chose the resort of Melanores in Gran Canaria as we’ve been there before in a different hotel. The ground is flat and well paved which is great so I can get around easily and if I needed a wheelchair we still could have got out to the beach, the restaurants and the bars. We stayed in the Lopesan Baobab resort where they honestly couldn’t have done more for us. They gave me a full (random) breakfast and had a full gluten free menu for me to pick my evening meal from that changed daily. I live for pizza and that was always on there with whatever toppings you wanted. They always gave you far too much but it was so good! The only down side was that a lot of the sunbeds are on gravely sand, so they’re a bit tricky to get to with reduced mobility but someone does come around to take drinks orders so once you’re settled on a sunbed, there’s not much need to move.

I actually took a trip to the waterpark which I must admit I was slightly shitting myself going to incase I popped a joint or just landed at the bottom of a slide in a destroyed heap. I found the slides you sit in an inflatable of any type were fine but I took all the skin off my elbow on one without and I could feel my joints slowly taking a beating. Even they did a gluten free hotdog and there were cats everywhere which always brightens up my day.

Aqualand waterpark

The sun is a great healer of all things pain related I find and I literally wanted to be left there to start a new life in the sun. My PoTS can be a bit of a pain, but I make sure I drink water with a hydration tab in (pictured below) and at least 2 bottles of water a day to stay hydrated, especially when consuming a lot of alcohol. Otherwise I’m dizzy 24/7. Some tablets can cause increased sun exposure which I learnt the hard way the year before. Only putting factor 20 on lead to me burning the whole of the back of my body. It blistered from my shoulders to my legs and I ended up full of scabs with me running into shady patches for the rest of the week looking a right dick, even the sun on my clothes absolutely killed.

Hydration tabs

I had the most amazing time and would recommend there to anyone! We went out almost every night and though I was on my walking stick most of the time it was so easy to get around. If I just said ‘sin gluten’ in 90% of the places they could cater for me and were completely clued up on allergies/intolerances. The pool was huge so I managed a swim most days which kept up my exercise regime and my mood.

Unfounded doubts I have about my chronic illness…

Living with a chronic condition is hard most of the time, even harder when for years doctors have doubted you and told you things like, ‘it’s all in your head.’ Coping day to day is a struggle, without the added pressure and annoyance of people saying things like:

‘When will you be well enough to go back to work?’ ‘It can’t be that bad.’ ‘People have it worse.’ ‘Have you tried yoga.’ ‘Eat some kale.’

I’ve comprised a list of doubts I have within myself day to day, that I can honestly say are complete nonsense. I think it’s a way of somehow beating myself up for being sick and needing to take time out for myself. Going from being such an active person to being stuck in the house a lot of the time is still taking a lot of adjustment and I’m constantly questioning myself (even though I haaaate being home all day).

  1. Am I actually as sick as I think I am?

The answer to this is yes. I sometimes sit and overthink every little thing that happens to me illness wise. I will analyse every symptom and question if it’s as bad as I think it is. I question whether I’m being weak and if anyone else would cope with it better. I’ve popped out a shoulder in my sleep and been like ‘have I somehow done this to myself’. The answers no, I take a hell of a lot of shit from my illness and my body is constantly falling apart, there’s nothing I can physically do about it.

2. Would my symptoms improve if I had a better diet?

It wouldn’t be a normal day without someone asking me this question, it’s a very valid point that I don’t mind explaining but it does make me doubt myself. Half of the time I can’t eat and I’m on a liquid nutrition based diet. I don’t pretend in any way that I eat remotely healthy, sometimes when my stomach is bad for some weird reason the only thing I can eat without puking is a McDonald’s burger with no bun. I have a very restricted diet, with no gluten, no wheat and minimal dairy. I’m on a low histamine diet which is absolute hell, avoiding like 50 things. In terms of eating more veg the answer is a strong no from me, I used to love some veg, but I can’t eat much of it now as I don’t digest it. So unless I want to be shitting whole chunks of pepper for a day I think I’ll give it a miss.

3. Am I actually well enough to go to work?

Sometimes managing a full day out the house raises this question in my mind. I walked around Cheshire Oaks outlet village for several hours the other day and managed to go for a meal after it. This is the first time in a while I’ve been able to do this, so would this mean I could manage a day in work? Well, since then I’ve been back on my crutches, barely mobile and spent a lot of time in bed catching up on game of thrones. There is no way I’d be able to do two consecutive days at anything. It is so so frustrating when people make you feel like you’re some sort of lazy scrounger. I loved the job I was doing and studying my post graduate diploma, so why the hell would I choose to be home all day bored and hungry. STOP DOUBTING YOURSELF CHLOE.

4. Should I be doing more exercise?

I swim a lot when I can, but there’s an issue with having bipolar for me and doing exercise. Last week I swam at least 70 lengths 3 times after not swimming for months. I get too into it when I’m manic and I can’t stop pushing myself too far because I am convinced it will take my energy away and help me calm. Having both a chronic and a mental illness makes life so hard for me and my mind and body are never in sync with tiredness. I have chronic fatigue which often makes it a struggle to even get up and get dressed, sometimes that’s enough of a challenge without forcing myself to get up and overdo it.

5. Do I need all this medication?

This is one of the things I question the most, part of this is because of the way chronic pain patients often get treated. I worry about taking morphine because it’s addictive and my GP surgery have tried to take it off me a few times. This means I will literally sit there in absolute agony or take ibuprofen which really aggravates my stomach before I reach for proper pain relief. I also wonder whether or not I actually need all my daily medications. Thinking about this logically, they have been prescribed to me for a bloody reason. I’ve tried stopping tablets myself and ended much worse off. So really stop being an idiot and listen to the doctor is my message to myself here.

Overall I think I need to be kinder to myself and have more understanding when I’m incapable of doing the things I used to. I’m trying my best and that’s literally enough. Be kind to sick people we’re doing what we can.