Self Care Plans

by Jane Cole

Our achievements look different for each of us with a chronic illness. Maybe you’re feeling pleased today that you made it out of bed, or made it to the local shop or like me, maybe you’re really proud that you’re able to work part-time. Whatever it is, give yourself a pat on the back for keeping going, while battling a chronic, maybe invisible illness.

However I think it’s a great idea to think about creating a ‘Self Care’ plan -

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We are all different, so naturally our self care plans will be as individual as we are.

For those of you who struggle with their mobility like I do, it may include ‘ pacing’ our activities, but also I need to keep moving, as too long sitting, standing, walking, driving , doing practically ‘anything’ for too long for my body without resting, causes a flare in my symptom’s and if I dare ignore these warning signs  I’ll inevitably hit my crisis point.

For me this results in my inability to control my left leg whilst walking or climbing stairs, severe muscle spasms, shooting back pain, burning leg nerve pains and fatigue. If I don’t rest immediately, it can lead to complete immobility, then emotional distress due to my inability to look after myself and utter frustration. I have learnt over time that, my determination can at times be detrimental to my health, whereas my ‘glass half full’ attitude does help.

The best lesson I learnt from my neuro physio is to remember to ‘rest BEFORE you think you need to’ this has helped me so much when out and about.

For each of us with an ‘invisible’ chronic illness the above can look very different, however if we ignore our own warning signs, most of us may end up at our ‘crisis point’. So by creating a ‘self care ’ plan that is as special and unique as you are, may help.

For me self care is many things. As I live alone, now work reduced hours from home, and with my immediate family some 4 hours away, it’s down to me to do everything for myself and keep to my ‘self care’ plan, so I can still meet friends on my  ‘better days’ and very occasionally manage a theatre trip, or something else I used to enjoy regularly.

I can no longer be as active as I was. Being very sporty and having a passion for dance, this has mentally been difficult for me to adapt to, my dream now is to go for a walk for as long as I fancy along the seafront. Or to go out in the evening with friends, without all the detailed planning that is now involved : where can I park, whether there is there a slope to the restaurant or stairs to negotiate. Ultimately deciding whether the pain and immobility the following day is worth the pleasure of the night out?

If nothing else, FND has made me re-evaluate how I spend my precious time and indeed with who I spend this time. It’s also made me ‘slow down’ and take a breath and appreciate everything much more. The plan I’ve created enables me to ‘manage’ this FND and to live as full a life as possible, even if it’s not the one I had in mind! When I was diagnosed at 46, some 3 years ago now, my Neurologist said, ‘try not to look back, try to look forward to a ‘ new normal’ life. Only now do I understand this.

My current plan includes, making juices with anti-inflammatory ingredients. Rolling my left foot on a spiked rubber ball every night to ease the arch pain and foot cramps, as at times, I drag my left leg. Exercising in the pool or the Jacuzzi, help to ease my tight leg muscles and back pain every few days. Daily epsom salt baths and heat packs on my legs and back soothe the pain at night so I can sleep. Most importantly, I try my hardest to listen to my body and make myself stop and rest.

On my best days, I manage walking swiftly without limping for a few minutes on the treadmill at the gym. Occasionally I find the confidence to break into a slow jog,  oh how I miss being out of breath from exercise! If I manage this I feel jubilant, as if I’ve just run a marathon, then I limp off ! 

After reading an article, attending a medical appointment, or chatting to someone with similar symptoms in one of our great FND online support groups, each time I learn something new, it gives me a ‘glimmer of hope’ and if it seems to help just a little, I will add it to my self care plan. We are all learning every day and there are bound to be mistakes- when we get carried away on our good days, let’s give ourselves a break with some well deserved self love and care, then get right back to our plan. It’s all a part of managing our FND or any other chronic illness, as best we can and gradually becoming to enjoy more moments in our  ‘new normal ‘ lives.