When you suffer from a chronic illness it can feel like you have no control. I have always found this to be the most frustrating and challenging part about being ill.
A few years ago my deteriorating health spiralled out of control so rapidly, I felt overwhelmed. Each day I felt like my body and mind were betraying me and conspiring to make my life a misery. Each day I would tell myself “just get through today, tomorrow will be a better day”, but there are only so many times you can tell yourself this when in reality the ‘better days’ were nowhere to be seen.
The reason I started this blog was because, I wish I knew then what I know now. When I’m writing I pretend I am talking to the broken and suicidal woman I was 5-6 years ago. My hope is that by sharing my experiences I can help others, and give people hope for the future.
With small steps you can gain back some control over your life and health.
Steps to taking back control
(Words of encouragement to the ‘broken’ me)
1. Take small steps – tackle one symptom at a time
When you have a complex list of medical conditions it’s unlikely that you will find one remedy for them all. If you try to find a remedy for all your symptoms at once you will be disappointed and feel overwhelmed.
Therefore, you need to decide which symptom is having the biggest detrimental effect on your health, and tackle that first. For me, that was anxiety. Anxiety affects my ability to cope with everything in life including pain, fatigue and stress.
I started taking CBD oil and practicing mindfulness meditation in an attempt to reduce my anxiety levels but along the way I also noticed improvements in many of my other symptoms.
2. Try not to give into frustration
Try not to get frustrated if you health deteriorates. The severity of symptoms for conditions like ME and fibromyalgia can fluctuate quite dramatically day to day. It’s not a step backwards, just part of the journey.
3. Try not to isolate yourself
When even speaking is exhausting and painful, it’s easy to feel isolated. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. I withdrew from all social contact for many months because I feared the negative impact it had on my physical health. For days after speaking to friends I would be exhausted. But my mental health suffered from this isolation. Sometimes it’s worth the pain and exhaustion for a few minutes of interaction with friends and family. Laughter often causes me pain but I still enjoy a good guffaw.
4. Educate yourself
Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available and keeping your sense of independence and control.
5. Do what makes you happy
As much as is possible, keep doing the things you like to do. You’ll stay connected as well as boost your self-confidence and sense of community.
6. Take one day at a time
I know it’s a cliche but it’s important to take one day at a time. Some days, just to survive, I could only think about the next 5 mins. Worrying about tomorrow can be depressing and can also increase anxiety.
7. Try not to beat yourself up
When I do too much, or I let stress affect my health, I often beat myself up. My favourite phrase, that I repeatedly told myself when my health was at its worst was, ‘you f**ked up!’ I blamed myself for my crash or deteriorating health. But it’s not my fault I’m ill, just the same as it’s not your fault. Be kind to yourself.
8. Take time to remember how bad you were and congratulate yourself for how far you have come
During the bad days, when my physical health deteriorates and depression hits, I make a conscious effort to remember how bad my health was 5-6 years ago. By focusing on that, I can see how far I’ve come. It often lifts my mood and makes the bad days easier to manage.
9. Please don’t be afraid to ask for help
Admitting you are not coping and that you need help, does not mean you are a failure, quite the opposite. Asking for help shows strength and means you are taking positive steps to gaining back control over your life and health.
10. Try not to worry about what other people think
Only you know what it feels like to be in your body. No one else will truly understand, even if they want to. They cannot feel your pain, exhaustion, anxiety, fears. They do not know the battles you face everyday and the strength it takes just to survive. They may think you are exaggerating or just lazy, but that doesn’t matter. It’s your journey not theirs.
11. Rest and Pace yourself
Resting does not mean you are lazy. You are giving your body what it needs to recover. You don’t have to do everything at once. Pace yourself and enjoy the little moments in life.
12. Have realistic expectations and celebrate each little achievement
It’s taken my body years to get this weak and exhausted so it’s likely to take years for it to repair itself. Rest, look after yourself and celebrate even the smallest achievements. By just surviving you are winning!
13. Finding a balance (Acceptance with a fighting spirit)
The push/crash part of a lot of chronic illnesses can be very frustrating. When you feel well enough, especially after a long period of being incapacitated, you want to do everything. But this only leads to a hard crash. I find when I’m active, my physical health deteriorates but my mental health improves. When I rest, my physical health improves but my mental health deteriorates.
So I often experience long periods of activity followed by long periods of exhaustion and depression. Try to find a balance
14. Remember you are not defined by your illness
Living with a chronic illness can be all consuming. It takes over your life and it’s often hard to differentiate between your illness and the real you. You are still the same person you were before you became ill, you just have a few additional challenges to deal with.
15. You do have a future – things can and will get better
No matter how desperate life seems right now, there will be a time when you can laugh again, when your life will be worth living again. I remember the first day in years when I could finally see a future for myself, it was such an inspiring day and the memory keeps me going when I have bad days.
Living with chronic illness can be stressful, but you can take steps to manage your condition and maintain a good quality of life. Learn as much as you can about your illness and treatment needs. Make time for activities and relationships that leave you feeling happier and supported, while avoiding people and things that stress you out. By adjusting your expectations and practicing self-care, you can make your health and wellbeing a priority and take back some control. Take Care x
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