As regular readers know, I have endometriosis. I also have chronic fatigue associated with the condition, and I am a lot of painkillers a lot of the time.
I also have 2 young twin daughters who are the lights of my life, and my own business Cherry Sorbet.
So, life can be busy, as you can imagine.
Holding down a job, or even a career with a chronic illness like mine can be problematic. I know of many endo sisters who are out of work, or who have never been able to hold down a job as their pain and endless hospital appointments make it very difficult.
I am very often in pain, tired, fuzzy headed, under pain medication and get tired very easily.
I am lucky enough these days to be my own boss, but even then obviously running a business requires a lot of input and I am often too exhausted or in too much pain to function on a normal level.
So here are my tips for coping, and for anyone out there also feeling frustrated and down about coping with an illness, please know you aren’t alone.
1. Be realistic
I am all for positive thinking (more on that in a moment), but there is a lot to be said for changing your expectations. My reality of a lot of pain, medication and two young children means that I am often not able to make meetings, speak to clients or do the work if it is urgent. I have made plan B’s now for all these scenarios to help the flow of things. I have mini me’s for meetings, a team of amazing designers and writers, and a great workflow to help things go as smoothly as possible.
2. Be honest
With yourself, your partner, your co-workers, your boss if you have one. This reality is not your fault, and you should not feel guilty about what you have to deal with.
3. Build a great support team
I am lucky enough to be surrounded by people who “get it” – friends, family and co-workers who know the score, who know that I am often extremely tired, sore, occasionally grumpy, and that I often have to change meetings and dates at the last minute if my pain flares up. Oh, and people that don’t get it? Let them go…
3. Don’t say sorry
Feeling guilty is a negative emotion; be grateful for the amazing people around you, and accept they understand how things are.
4. Do all you can to educate yourself and improve
Be always on the lookout for how to help yourself through nutrition, complementary therapies, whatever you can. By taking control where you can the chaotic nature of a chronic illness is lessened. This really helps me deal with the frustration of illness.
5. Reframe it
Re-framing is a brilliant part of NLP practise that is so, SO useful in dealing with chronic pain. I have been reading a lot about NLP recently and have worked with the lovely Jo James from Amber Life on using it in my life. Rather than seeing a day or afternoon spent in bed as a waste, I try to re-frame it as an opportunity to rest, a day to write and blog if I have mental energy to do so, or a day to recoup if I don’t. The sooner I accept the need to rest, the sooner I get back to doing things.
6. Be flexible
Plans can change in an instant. I can go from feeling 5/10 to going downhill fast and I need to be able to cope in those situations. Have plans, a, b and c if needs be – often the case when childcare is needed or work has to be done. I can find being flexible very difficulty, luckily I have a partner who is much better at thinking this way than me!
7. Don’t push too hard, just hard enough
Much of my fatigue is attributed to adrenal burnout, as well as the associated fatigue with endometriosis. I have often fought it, tried to carry on as “normal”, when I have a different body to the people I compare myself too. Equally, knowing when to push hard enough is essential; depression is really common in chronic pain conditions as life is affected so much, and knowing when to get out and about versus resting is a fine balance to strike but the essential lesson to learn. Instinct is usually best…follow your heart and listen to your body too.
8. Concentrate on what is working
Identify if you can the areas that are working well, or things you can do that aren’t time reliant or too demanding. For me, writing and blogging is perfect as it’s flexible enough to fit around the kids and my health, creative, fulfilling, non location specific and self-produced.
Do you combine work, children and chronic health? Let me know in the comments how you do it. Or, do you struggle to stop making yourself feel bad for not being “perfect”?