Chronic pain, chronic illness, chronic disease.
Labels we never want to hear the doctors diagnose us with. It leaves us in the dark, facing a life long struggle with the feelings & pain in which we battle every second of everyday.
These are the 10 worst things about suffering 'chronically'.
I hope these factors may help people relate, know they aren't crazy! Along with helping people understand what a loved one or friend may be going through.
1. Grief - we harbour so much grief. We grieve the life's we had and the dreams we were aiming for. We find it hard to accept we cannot do what we used to or handle what others our age are doing. It is soul-destroying. Accepting and adapting around your condition when it comes to life is an extremely difficult task which I feel takes the longest for us to finally begin to learn. We also grieve for our loved ones. For the times they miss out on and the strain we place of them with our health. A support they offer we can never repay sits on us heavily. We are truly grateful for all they do and wish they didn't have to give up, miss out etc in order to care for us.
2. Fatigue - a tiredness no length of rest or sleep can cure. Fatigue that leads to confusion, mood swings and general sadness. We all know when we are tired our pain and feelings seem heightened making life even more of a difficult task. You walk around like a zombie, talking, messaging, getting dressed zapping you! Only being able to last a short time at any event. Is heartbreaking. Where's the 23 year old that should be able to do an all nighter?
3. Anxiety - we love and need plans to help us have something to look forward to, keep fighting for and keep us motivated. Our pain, health and feelings are very unpredictable however. We don't know how we are going to feel. Our symptoms are always changing or can heighten out of the blue. Plans that are set in stone may not be a good idea. Yes if you have tickets to Wimbledon and you are a major tennis fan, whether you are having a good day or a bad one do try and go and make the most of it! With everyday plans however, arrange things that can be altered, flexible and 'easy'. Activities such as pub quizzes, bowling, cinema, drinks, meal etc. Events that are flexible and not too long where you feel you have overdone them and your fatigue has zapped you & the fun out of the event.
4. Brain Fog - brain fog the kind of brain nobody wants. Where you feel like you are no longer 'here', 'in the room', 'in the conversation'. Often leading to memory loss and extreme confusion. We never know when we may be affected by brain fog nor a lot of the time can we feel it come on. It just hits you like a tonne of bricks out of nowhere. It's a horrible feeling. Again you feel you have missed out/ missing out. You already miss so much that this feeling just leads to further sadness.
5. Laziness - being unable nor do you have the energy to do what you want / what you used to. You are forced to take more 'me' time and do quieter activities. Which leaves you missing the times you used to rush around, explore and travel. Heartbreaking. You worry about judgements made on you for taking this time out. People who doesn't suffer from chronic illnesses think a week's rest will be your cure, so why after a week aren't you back rushing around and taking on life. These judgements alone trigger upset & anxiety. None of us asked for our condition and we can't control it. We control it the best we can.
6. Lack of support - we don't expect everyone to understand our struggles and pain. Yet lack of support and understanding from your most loved ones is hard hitting. The people who should know you the best tell you to 'snap out of it', 'it will all be fine.' Is very hurtful. If we could snap out of it we would have done it yesterday!
7. Lack of self-worth & purpose - we lose a part of ourselves. Unable to carry out hobbies we loved, work we enjoyed or socialising we always took part in really does effect you emotionally. You question what you are good for and that's why it's so important to us to do the little things we can to show ourselves we do have a purpose.
8. Pain - pain you can't control, get a hold of or cure. We have to have ride out a lot of the pain we feel. We can't just wave a magic wand and boom you are cured. We are forced to suffer and adapt with the pain. Yes some days are better than others and some days are unbearable. We may be able to talk for an hour and sit infront of you with a smile on our faces but the pain is eating away at us. Or days the above is just too much and we can't even hack a hour being out and around people.
9. Depression- you can't expect anyone who is suffering chronically not to be affected by depression. Not only do you harbour the feelings of pain but also the loss of life & dreams you had always hoped for. It's bound to make you sad. We are as positive as we can be but like 'normal' people we all have bad days- some worse than others.
10. Coping - no matter what or how we cope we will always feel in the wrong. If we rest we will feel lazy and as if we are allowing the pain to take over us. If we keep busy and burn out then we have overdone it and heightened our pain. It is so difficult to get the right balance. You will never please everyone nor will you avoid judgement with whatever you do. So it's important to what you want to do / listen to your body.
The chronic label can and is very daunting. It is a growing issue among our society as more and more diseases become chronic. Entailing life long treatments and care. Adding extreme pressure on the patient and their families. To know that the road is long and that tomorrow you won't wake up feeling like a new person is a tough fact to get our heads around.
If you have a friend, loved one or know someone suffering with chronic illness please take notes of the points above and take the time to place yourself in their shoes. See the difficulties they bravely face every single day!
I know that just last night I ate 4 pringles just 4!! Yet the sunflower oil in them lead to my throat to swell up with lumps on the outside and I was unable to breathe properly. Like I suffered in Cuba. I had just taken my tablet for Lyme as well which on taking given an hour begins to heighten my symptoms. Burning, tingling, joint pain and headaches. I quickly got myself into bed and prayed to sleep it off.
This is a perfect example, an example of how unpredictable life becomes and how we are forced to adapt as best we can, under pressure a lot of the time to relieve the pain. Escape!!
But there is no escape from the torture chamber.
Please, please, please try to understand the difficulties and work with us! Not against us.
None of us wished this upon ourselves and we sure wouldn't wish it upon our worse enemies.
Thank you for reading.