The title of this post may give you the impression that I have it all figured out and I don’t struggle. Don’t get me wrong, there are still a lot of times when I just want to scream and cry and tell everyone to piss off. These are just some of the things I’ve picked up since my chronic illness started interfering much more with my daily life.
A – Accept help. We may feel like we are giving in by having help for certain tasks but all we are doing is saving ourselves from more pain and payback.
B – Breathe. When you feel yourself starting to get wound up or flustered, just breathe. Take a few deep breaths and count to 10. It helps a lot.
C – Create a relaxing environment. Having an escape from the world is essential. I will do a full blog post with my top tips for a stress-free home.
D – Diet. I don’t mean lose weight. Maybe just try to alter your lifestyle slightly to make you feel better. Try and limit caffeine intake and fit in a few glasses of water a day instead. Just switching a few bits can have a hugely positive influence on your overall health.
E – Exercise. We all know that exercise is difficult when you live with constant pain but give different things a go and see if there is one form of exercise that you feel you benefit from and try and stick at it a few days a week. Half an hour of exercise a day can improve your health greatly. Try swimming, walking, yoga or simply try self-propelling in your wheelchair.
F – Find time to see family and friends. When you live with chronic illness it’s easy to feel isolated and this can impact our mental health. Just having a friend around for a cup of tea can be really positive for your mind.
G – Get a good G.P. Finding a good doctor can take a lot of time but it is so worth it. Having one doctor who is willing to spend a bit of extra time with you, see you regularly and devises a decent treatment plan is not a doctor you want to get rid of. It’s also so much easier not having to explain everything to a different doctor every time you make an appointment.
H – Heat pads. An essential for any chronic pain patient.
I – Ice packs. Again, an essential item.
J – Join online forums. It’s not often we know people in real life who know exactly what we are going through, so online forums and chat groups can be a god send. It’s a place to vent and make friends who can completely sympathise or offer help and advice. There is no judgement here!
K – Keep on top of your medication. I’ve put this in here because I am terrible at this but it’s really important to make sure you get prescriptions re-filled BEFORE you run out!
L – Learn your limits. I’ve never met anyone who has completely mastered this. We all want to push ourselves sometimes because we don’t want to miss out on life. It’s completely understandable but sometimes we just have to accept that our body isn’t going to cope and ew need to rest.
M – Mindfulness. This isn’t for everyone but it can really help to practice this, especially if you are suffering with anxiety or depression. There are many books available or even videos on You Tube which explain mindfulness and how it can help you.
N – No. This word needs to be said without guilt attached. Sometimes we have to look after ourselves instead of trying to push through just to please others.
O – Observe. When you suffer with illness, you realise that you used to stress and worry about so much that you didn’t notice how amazing the world actually is. I feel so lucky that I can now appreciate the little things in life. I try and teach others this but I think it is the gift we’ve been given for having so much taken away from us.
P – Prepare. Consider different situations when you are leaving the house. Do you have something to drink? Do you know where the toilets are where you’re going? Could you possibly need to take more meds while you are out? It’s things we’ve never really had to think about before but now, this preparation can be the difference between an enjoyable day and a crappy day.
Q – Quiet time. If you feel like the world is getting on top of you, make some time for yourself to just relax and breathe and escape. Quiet time isn’t always an option when you have kids running around but try and include them in it. Have a movie afternoon, bring the duvets downstairs, get some snacks, close the curtains and watch a film. It’s good to just have a chilled out couple of hours but still spending time with your kids.
R – Records. Having copies of your medical records can be really handy. You can get these from your doctor (sometimes at a small cost) but they have the dates of all of your appointments, diagnoses and referrals etc. I found that having these really helped me when I applied for disability as I photocopied some of the notes and sent them in as evidence and was able to give quite accurate dates as to when symptoms started.
S – Stop. If you’ve got a few errands to run but by the second one you can feel the pain and fatigue creeping in, stop. Don’t push yourself. Prioritise your errands and if you still have one or two that can’t wait, ask for someone to help you or have a rest and see how you feel afterwards. We aren’t superhuman. Sometimes we just need a break before we carry on.
T – Take extra breaks. This one is aimed more to those who work. When I was still working, the company I worked for asked me if there were any adjustments I could suggest to make my shift a little bit easier. I told them I needed more breaks and it made a huge difference. I was able to break my day up more so I could cope longer in between. I also had Wednesdays and Sundays off every week so that I could use those days to rest. of course, not all companies can offer different days but they MUST offer reasonable adjustments. Definitely suggest regular breaks if you can.
U – Unwind. Take some time to do something you enjoy. You could try and learn a new skill or do something you’ve always loved. This will keep your mind focussed on something other than the pain. Hobbies are good for the soul.
V – Visit. Sometimes you just need to escape the 4 walls and get some fresh air. If you don’t want to meet friends then visit local tourist attractions, a coffee shop or a park. There are normally pages online with suggestions of local places to visit. Get out and explore when you can.
W – Wellbeing. Learn to let go of the negativity that comes with a chronic illness. This may take a considerable amount of time but that feeling of freedom once you do is amazing. I care more about my wellbeing now instead of caring about what others think of me.
X – eXplore options. (Yes I cheated on this one.) Most doctors and other health professionals will suggest medication, physiotherapy or other treatment methods but they don’t really suggest going down the ‘natural’ path. If you want to try it then go for it. Don’t just hear one suggestion and think that there’s nothing else. A lot of people try acupuncture, reiki, reflexology, massage, herbs, foods, drinks and a whole host of other things. You aren’t limited. It’s your body, you should manage it with treatments you believe will be best for it.
Y – Yourself. Only you know your body. You can tell others your problems but nobody will ever fully understand it like you do. Just because someone has the same medical diagnosis definitely does not mean that they know what is best for you. You will definitely get these suggestions from people whose mums brothers wife had an auntie and she cured the same problem by rubbing bird shit on her face and dancing around a fire pit chanting words from a Madonna song. You stick to being you.
Z – Zest. Don’t lose your zest for life. You are still you. You may have limitations but you are still entitled to enjoy life as much as anyone else.