I have so many posts I need to write and share with you over the next few weeks including book reviews, guidance for setting and achieving goals with a chronic illness, and requests for help and feedback on a couple of big projects I’m working on. I look forward to sharing all of these with you and with setting some little challenges to help us all move towards being the best we can be starting with today’s post: Lessons learnt in a year of chronic illness.
The last year has been very stressful and busy for me but through all of this I feel I’ve learnt a few things about myself and how I can accept and live with my chronic illnesses.
The Top 5 Things I’ve learnt from my chronic illnesses
- Everyone’s experiences are different. Each and every person who suffers from a chronic illness (even the same illness) has different symptoms and reacts differently to different treatments. For example my main symptoms are extreme brain fog, constant pain and constant exhaustion. A friend of mine who also has ME/CFS doesn’t have the constant pain, instead her worst symptom is sensory sensitivity (I struggle with this but not as much). For some people antidepressants such as Amitriptyline (Endep) help with pain and sleep issues, over the last 2 months I’ve found it doesn’t help me. I have found though that a TENS machine helps with some of my pain and that meditation and being mindful is the best thing I can do to help me be able to focus better and actually achieve the things I want to do within my limits.
- I’m stronger than I thought. Many people around me, including my husband, doctors and close friends, have commented on how well I have been coping with this illness. I’ve had a few people actually tell me it’s OK to share my negative thoughts, as if I was just hiding them away. Somehow I have managed to stay mainly positive about my situation. Yes I’ve had a few bad days spent crying and feeling sorry for myself, but overall I’ve seen the benefits of having more time to do the things I need to do to feel better, to relax and to reassess my life.
- Family and community are the most important thing. Having a strong relationship with my husband and both our families, as well as our close friends, has meant that I’ve had ongoing support since I first became ill. I think this has been a major factor in my ability to stay positive. However, sometimes I’ve found that although they try to understand (and I do love you all for it) they don’t always really get what I’m going through and why I’m making certain decisions. This is where my new found group of friends, here and on Facebook and Twitter, has really helped. I’ve made connections with others who are going through the same things as me, I’ve been able to help them and they’ve been able to help me.
- It’s important to have something you’re passionate about. The first 6 months of being ill were the most difficult for me. During this time I had quite a few negative pity days and I struggled to find ways in which I could feel useful and purposeful in my life. Then I began blogging, I made new friends and I started working on the Foggy Frog Campaign. I realised that even if I did not have the enery to work fulltime, be out in the world talking to people or researching and developing key sustainability strategies and projects I could still be useful. I just had to find a way to work within my limits on a project that I felt passionate about and that I could engage others in as well. I’m still passionate about the environment and sustainability but at the moment my strongest passion is raising awareness and advocating for the chronically ill using Foggy Frog and the Pain Gang as a tool.
- Being ill opens up new and exciting opportunities. Before falling ill I was working fulltime in a job I enjoyed. It wasn’t completely my dream job (half was, the other half was necessary work in the position but not what I really enjoyed) but I was fully engaged, enthusiastic and passionate about the work I was doing. Then I got sick. I still wanted to do the work, but I didn’t have the energy or strength to keep it up. Slowly, as my health has improved and stabilised slightly, I have found new passions in chronic illness awareness and advocacy, mindfulness, meditation and sewing. I have also reignited a passion for yoga and a desire to run my own business. I have previously tried working for my self doing consultancy work with people I had worked with in the past. I really enjoyed the flexibility and variety this work gave me but I had not been making enough money for us to live off. Once again, the desire to work for myself has come to the surface. There are pros and cons to this and I will assess those in a future post but it is something to seriously consider at this point in time.
Overall, having a chronic illness has made me realise the importance of a great support network, a positive and flexible view on life, and keeping yourself passionate and engaged in what you do.
Chronic illness takes away so much and can make it difficult to be dependable and spontaneous but there is also so much you can learn and do when you accept that a chronic illness is for life and you have to learn to live with it. Consider your options and make the right decisions for you right now. When living with a chronic illness I believe it’s important to live in the moment, don’t compare what you’re able to do now to what you used to be able to do and don’t spend all your time worrying and stressing about the future.
How do you want to feel now?
What can you do to feel that way?
These are the questions I’ve started asking myself daily. Try it, think of one thing you can do today to make you feel happy, loved, accomplished or whatever feeling it is you need to feel right now.
If you focus on what you can do and take action every day (no matter how small that action is) you will keep moving forward.
My challenge for you today is to ask yourself the questions above and let us know what one thing you’re going to do today to get closer to how you want to feel.