M.E and pacing

January 14, 2018

Pacing yourself may be one of the things you find the hardest with your M.E, CFS and or fibromyalgia. You may believe you continually try to do this, not only to fail but fail miserably, and unfortunately not only do we have physical obstacles we also have cognitive, social, economical and often emotional ones too. 

 

Pacing is very relative to the individual and her or his unique circumstances. When I was ill there wasn't really any doctors, nurses, physiotherapists, occupational therapists or holistic health practitioners who were fully trained in how to assist people with these conditions. This is getting better, and I'm delighted to have just watched a webinar organised by Action for M.E and funded by the Scottish government, where Fiona Wright an O.T in Bristol said there are now 300 O.T's trained specifically in managing this ~ So if your G.P doesn't know ask him/her to refer you to an O.T specifically trained in the management of your condition. This is crucial as methods of rehab are very different with M.E, than they are with similar conditions. I'm led to believe other things are changing slightly too so hopefully one day there will be even bigger shifts and as much support for the approximate controversial number of 250,000 people with M.E in the U.K as there is for the approximate 100,000 with M.S too.

 

A real change of mindset is what's needed here as I discovered with myself and others. And within the scope of that here is one mammoth favour you can do for yourself and that is...'Don't compare your activity level of now while you are ill or at anytime in your recovery journey to that of before you were ill!!!'  Make that one of your mantras! While you are recovering you are honestly banging your head of a brick wall by doing that, believe me I know, as me and brick walls not only got acquainted but got way too friendly! The thing is, we can get into the habit of doing this as we are finding it all so very difficult to take in and others compound that by not believing us! They call us Lazy and blah, blah, blah... and all the while we know deep down that lazy is the polar opposite from what we are. Most of us are high achievers who often work above and beyond the call of duty! And yet we can sometimes start believing them and what they perceive to be the truth as we get so absolutely worn down by it all. Then we sometimes feel we have to constantly prove ourselves with talk of our previous role ~ as if only they could see the real us they would understand the magnitude of  the complexities we are dealing with ~ and maybe just maybe there would be some sort of empathic response that would lead us to the support we desperately need while we are in this vulnerable position. If people cannot take some time out of their ‘busy’ day to at least try and be humane and empathetic don't waste your valuable time and energy convincing them ~ It's far too precious! Ask the universe to send you people and situations that are supportive and keep doing that until you have all the support you need. The 'law of attraction' and 'The secret' are great books to read on this subject.

 

It's crucial to remember that everything single thing you do, say, listen to and think requires energy. I didn't actually fully realise how much energy it took to do things until I was in the position where I was exhausted with my only two activities each day which were sitting up in my bed to eat, which had to be done in stages, and often took an hour or more for that process to be completed, with the many breaks and mini naps it that had to be incorporated in to support my body and digestive system while it coped with this activity. Even my wheelchair taking me to the room next door for the loo became a laborious task when bed pans had become too difficult for me and my husband to work with. Managing to say a few words now and then was a luxury. Sitting up in bed with supporting pillows for longer than ten minutes was a rare treat. This was my life for a very long time. The second major relapse after I contracted the swine flu etc took many more years to recover from and affected me at a much more profound level.  

 

It's important to know that when this illness is at an acute stage that if your body and mind are telling you to rest then that is exactly what you should do. There are times when it will be appropriate to do graded exercise, but caution has to be exercised here ~ not to be confused with fear of course which has been mentioned to some individuals I've listened to.

 

So pacing for me was about deciding how to enhance my life so that I felt that I'd achieved something. The tiniest of activities had to become big achievements, like "Isn't that great I managed to pull my own body into the wheelchair today to go to the loo." Isn't that amazing I actually managed to eat my dinner without becoming breathless." "Isn't that great my brain managed to cope with a little light for an hour from the opened blind today, I even saw two birds and four butterflies!" Write these things down, write your daily achievements down and that way each day you can build on it ever so slightly and you should notice a  daily change to be proud of.  Don't be disheartened when things don't work out the way you planned, there are always curve balls. Try not to from attachments to expectations ~ Go with the flow.

 

When I first started to go swimming I got taken in my wheelchair and was in the pool for three minutes, and there were times I did think to myself is it really worth all the bother for that silly amount of time...FLIP THE SWITCH...course it was because now I can do an hour in the pool. So, it's taken me many years of rehab to achieve that level of fitness again ..FLIP THE SWITCH...Look at the amount of activities I can do in a day now...wow isn't it amazing how much I've learned and achieved from  having had M.E! And look at all the gifts I never realised I had that have blossomed from the dark pit of that experience, look at all the wonderful people I've met, that I may not have otherwise. Look at all the miracles that I see every single day! Look how far I've come!!!

 

Decide what is important to you when you wake up in the morning, prioritise and make a little mini plan of what you'd like to do with your day, don’t be too strict with yourself, you may have to adjust your ideas of  wants and needs to do this and go back to basics if you have severe M.E. ALWAYS stop before you feel overwhelmed with symptoms, I know this is hard as often they come upon you before you realise but leave a little credit in your M.E energy bank, that way your chances of prosperity will heighten as you gather more interest. Take breaks between activities. If you have severe M.E then perhaps your cognitive symptoms will be so bad that you will fail to recognise that line in the sand, so you may need your carer to keep reminding you. Or set an alarm on your phone so you can take note of the time. Sometimes when the endocrine system is in that dysfunctional state our adrenal gland will over produce and this will make us believe that we have more energy than we think, that is the time to do even more meditation and go with the stress relieving mind, body relaxation techniques, as at these times it can give you that sudden false sense of wellness when in fact it is a wired-ness that had erupted as a result of the mind and body trying to find balance. Help it to find balance by doing calming things like meditation, mindfulness, art, crafts, writing, eating calming foods, taking calming drinks as this will help to calm down that wired adrenaline stress response, which will help you to avoid always crashing thereafter. 

 

The crucial thing to remember is to do things that make you happy, feed and nurture your mind, body and spirit with the raw authentic richness of life. For me I like a lot of colourful variety in all areas of life. So my day generally consists of various creative pursuits, which I’m fortunate to have in work and playtime...some connections with loved ones...kindness...some cooking...some relaxation type things... some rest...some exercise of some sort...some nature....and some play/hobby interests time...

 

Don't get drawn into negativity from any avenue. But equally important is not starting a war inside yourself by avoiding conflict. Be kind to yourself, and if you are in the severe spectrum especially, only do for others if you have enough energy and wellness left over ~ as the ones who really love you, are not concerned about what you do for them, they just want to do everything they can to help you get well again. Go at your own pace. Listen to your own body. Follow your instincts. Slow and steady wins the race...

 

This is a fabulous song. Please know with every fibre of your being that one day you'll not only be listening to it but you'll be dancing like you've never danced before! 

 

Lots of love and hugs X

 

 

 

 

 

  

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