The 'Fibromyologist'

I have been on the edge of that ledge where monsters lie. Where chronic pain or chronic illness can have you feeling alone, and or desperate at times. If you are dealing with days in bed or a loss of your normal day to day activities, feeling like a bystander in your own life is plausible. FOMO here, fear of missing out, can happen initially as you try to metre out the energy for each, and every weekly task. Sometimes it can be daunting just to perform daily tasks. If you have had worsening symptoms, or you are in a fibro flare, you might not care how much socially you are missing out on. In my case, raising my children to be responsible, respectful, kick ass adults has been challenging. There has been most basketball games I’ve missed as sitting on the hard bleachers (despite the fact that I bring a pillow to sit on) or standing too long on the gym floor is impossible.

It also can be boring. I remember having a 26 month long migraine in my head and in my body that rendered me confined to the bed. The grim spectre of pain had tried me to beyond. Needing limited stimuli was essential. Sensory depravation can be ad difficult come-by as you may have a busy family to care, and yet necessary in order to offer your nervous system comfort. Honouring yourself is crucial. Honouring the requests of your body, and mind set new boundaries with others that can be hard to process. Communicating as best you can with your family about your condition will hopefully render compassion, and empathy from them. That said, education for them will be key. As you know more about fibromyalgia, and if you decide that guiafenesin is right for you…they will need to be in on the plan. You may find all of this quite tedious, boring, and heartbreaking. Let’s not forget how literal the physical pain is. See? The contradictions?

Netflix, Prime and Disney + has ensured I do not go bonkers on days when I’m still in bed for fatigue, pain or a coupling of both. On the days that you may not have any extra ‘juice’ for anyone else but yourself. I’ve found puzzles, video games, painting, drawing, writing, anything I can do while resting is good. Don’t be a maniac or a martyr.

It is hard on the partners or children to watch us go through this ordeal that said I have found with myself, that I have resisted asking for help when I needed it. Preferring to do it on my own because I simply do not want to be a burden to anyone in any way. Reaching out to get support when you are feeling alone or in need, is super important to your wellbeing.

Connecting with those that understand can be relief in a word. There is a wonderful app called, The Mighty, that is great support for chronic illness sufferers of fibromyalgia, depression, anxiety, MS, and so forth. If you are in need of a kind word or some desperate venting, there is always a compassionate ear.

Give yourself the gift of dealing with grief by virtue of surrender. It is okay to be mad, angry and desperate. It is not okay to stay there. Find a qualified someone that resonates and talk. Find someone that understand fibromyalgia or a chronic condition. Your doctor may even suggests a pain clinic. Keeping a physical or electronic journal of symptoms is also good as recalling things at times when necessary can be challenging and helpful to release any trapped emotions. Find what works for you. This will assist to fill the the empty space of boredom, and loneliness.

Maybe you decide to grab your toddlers crayons…

Make your recovery, your new discovery❤️