I realise this title seems completely backward. Until lately, I’ve spent nearly every day of my life since being diagnosed cursing my chronic condition. Cursing the pain my IIH (Idiopathic Intracranial Hypertension) gave me. Wondering why me? and wishing it selfishly could have happened to […]
Tag: Chronic Pain
Living life with a chronic condition often means being forced to have rest days, even a pro’s at spoon management have random pain days that will only worsen if you push through. I’m the worst at pushing myself too far, trying to get as much done as I can and finding that I’ve ended up using spoons (energy) I didn’t have, from a day that hasn’t even started yet. This usually leads to being in agony the next day, starting the day with no energy. It’s times like this it’s good to know the best/ most relaxing ways of keeping your spoonie brain active.
1) Watch all the TV programmes
Watching TV is one of the easiest keeping your spoonie brain active, dragging your duvet to the sofa (or getting your partner to move your duvet while you ease slowly out of bed, or just watching TV from the cosy warmth or your best if you so lucky) is one of the easiest ways to relax. On really rubbish days, I repeat shows I’ve already watched and use them as background noise while drop back of to sleep. You’ll be surprised by just how much is out there and with services like Netflix, Amazon, BBC Iplayer and 4OD available you won’t be subjected to daytime TV that usually consists of Jeremy Kyle and Judge Judy.
2) Read/ Listen to audio books
Reading is a fantastic way to kill some time and immerse yourself into a different world. For those who aren’t big readers or struggle with poor eyesight like me, there is also a massive range of audio books available. Everyone will have their favourite genre to stick to but while you’re resting up why not take the chance to read/listen to some self-development books, sharpen your skills in your favourite area of knowledge and expand your mind while your body is resting.
3) Play Mobile/PC/Console games
I’ve always been a bit fo a gamer, since being the only girl at college I quickly got hooked on Call Of Duty and my gamer life exploded from there. On the better days when I’m able to get things done I do have to be aware get addicted to playing a game I’ve fallen in love with. Getting hooked can quickly take over life which isn’t so great if you have a lot to get done but amazing if you’re keeping your spoonie brain active. Otherwise, Sims on the PC has always been a go-to game when I need my body to rest, lord knows I could spend hours building THE perfect house. If neither are available to you, find out what mobile games you have available. There are massive libraries of games on to keep your mind entertained for a while.
4) Write a story/journal.
I find I need a clear head to be able to write, which is tough sometimes but it’s so soothing to write. Even if I’m unable to write a constructive blog post, writing about my thoughts and feels can help with anxiety. Sometimes just getting your thoughts out of your head and either on paper or onto the computer (personally I like the old-fashioned version) Finding the perfect notebook can be so inspiring sometimes. If you’re not keen on writing your feelings, then try just putting pen to paper and coming up with a story. You don’t have to be a top author, but getting your brain in the creative mood can just as good at keeping your spoonie brain active as watching TV.
5) Pick up a new hobby
Pick up a new hobby, the older we get the more we tend to lose touch with some the things we LOVED doing as kids or just don’t have time available to learn those things we’ve always wanted to. I always loved painting myself, I lost touch when I went to college and chose to do IT and haven’t picked it up since. (but I think I will now) I have also tried knitting and crochet in the past, although I don’t have the patients for them. If you’re stuck for ideas, it’s always worth browsing Pinterest for inspiration, this site couldn’t be any more filled with hobby/crafting idea’s to fill your time and you can choose depending on you’re energy levels and abilities.
6) Do some therapeutic colouring
I feel like colouring technically falls under having a hobby but since it became super popular this year with proof being super relaxing. It’s a great things to do if you’re feeling particularly pent-up and anxious and can be seen as a form of meditation. There a HUGE range of books out there to suit your preferences, most of which are at a reasonable price. I recently brought a fantastic nautical themed colouring book while I was in the hospital and have loved it since. Sometimes there is nothing better than sitting down and doing some colouring while the world whizzes around you. (Of course made a little more difficult if you own a cat since they are the pen stealing ninja’s)
7) Expand your musical tastes
On days when you absolutely 0 spoons, listening to music is one of easiest things you can do. I find myself just lying in bed some days and listening to music. If you’re getting bored with the music you have then take this time to expand your music library, open your world up to the massive library of music across the world. I recently connected my Spotify up to people on my Facebook friends list and have been pleasantly surprised with the new music I have found and It’s great being nosy at what every enjoys listening to. (And finding out that your ex-bf from high school now listens to the music he used to take the mick out of)
This post came about when I was forced to rest up for about 3 weeks straight and no longer had a way of keeping my mind active, being a spoonie means accepting when you need rest, even when accepting it is one of the hardest things for you to do. Every spoonie has wanted or felt the need to push through the pain days when you have way to much to get done but accepting and working with your body, you have a higher chance of living more peacefully with your condition. By listening to your body you’re decreasing the chances of doing yourself addition harm. I hope that you find these helpful, it was with the aid of the spoonie community I was able to put these together, so thank you to those who made suggestions on the days I was struggling.
Its pretty late for a 2015 review, truth is I’ve had this written for a while. Not can’t sure why I didn’t post it earlier. 2016 has already given so much that I’m just not ready to share yet, but they certainly make up for […]
No one ever plans get diagnosed with a lifelong incurable chronic condition at the age of 21. No. My plan was to grow up, go to school, college and uni. Get a career doing something in IT – I hadn’t had time to narrowed down specifics yet – and get a career until I had enough knowledge perhaps start my own business in the IT Industry. A carer that allowed me to be a boss that didn’t need to be in the office 24/7 and still raise a beautiful little family and a beautiful home. A lifestyle where money wasn’t an issue and we’d have enough spare bedrooms for everyone to have their own room when ever family came to stay for Christmas. A huge field out back so the big kids of the family could show the young ones how real tree houses were built, and the old ones could sit in front of a log wood fireplace under blankets and watch terribly nostalgic films like Chitty Chitty Bang Bang and Zulu (A much-loved favourite of my step-dads)
A fault in that plan, made me feel like a failure, some days it still does. So triggered the anxiety.
I have talked a bit about my troubles with anxiety before, but this time I wanted to talk about how anxiety fits into the mourning process. In a little under 3 years and I am completely different person because of my condition, there is part of my life that I have had to say goodbye to (even if it is only temporarily) that I wouldn’t have had to, it didn’t have my condition. But it’s all been a part of grieving for the life I’d lost.
The 5 Stages of Grief for Chronic Illness or Pain
(From my point of view)
(A little over a year ago) 1 LP down and I feel great! At least I finally know that’s wrong with me. That good-looking neurologist says 3 LP max and I’ll have my life back, so realistically I’m okay. I don’t really see the point of taking this medication, because I feel fine. I just need to work, I only just got this job and it’s important to me. I’ll deal with my the pain if it starts again, for now I’m fine.
Why can i never get into see my neurologist when I need to?! And why does he never call me back? These meds don’t actually do anything! I’m sick of not getting any answers from anyone. The doctors are supposed to have the fucking answers but they don’t and sick and tic of tired of being left in the dark in pain. They’re so busy seeing everyone else they don’t have time for me.
I don’t understand where my life is going…I’ve wasted over a year of my life now being ill. What the hell am going to? I’m going to be like this for ever and I’m going to poor and my children, if i can even have children are going to be poor and I’m just useless. I’m so scared for my future, i don’t see how it’s gonna get better?
DEPRESSION (and/or ANXIETY)
I’m failing because I can’t work. I’m failing because I can’t protect my family, i’m barely strong enough to look after myself let alone anyone else. My family is getting stick and my sister is having to be the strong one…it’s my job to be strong and look after everyone because that’s what I’ve always done but I can’t. I don’t understand my purpose if I’m not able to do what I’ve always done. (honestly tearing up while typing, my anxiety for these parts of my life is this a big thing for me)
There is so little of my life I can control now. I understand I still have some thing I need to work on, and I remain hopeful that we find something that helps me feel better, but for now I have to remember I am doing the very best I can and not beat myself for the things that I am unable to do. I know that I love helping others and I enjoy my passion for IT so why not try putting them together.
The most important thing to remember here is that these stages, don’t happen in order, and they can change daily or even hourly depending how you feel. Just because you have reached acceptance it doesn’t mean “boom” your done *throws confetti” congratulations. Chronic illnesses are hard and relentless and draining, don’t beat yourself for being angry or having some anxiety because the shit you deal with…it sucks! Nearly three years on and I know now you’ll probably never leave this cycle but as time goes on you’ll find yourself sitting in acceptance a little lore often for a longer.