Any given day is not instantly marked as Bad because of the symptoms I might experience.
At any given time, if asked what my symptoms were, I would struggle to list them. In order to get the hell on with life, I have had to normalise them in my mind. It’s not been an exact science. There is still fear when the feeling of mild pins and needles appears in my legs, because that can be a sign a bout of paralysis is coming. And the feeling of swelling behind my right eye has never, ever been anything other than scary.
But on the whole, I have really managed to come to terms with the fact that the symptoms I experience each day, are my Normal. Some symptoms are actually quite amusing! The majority are just plain baffling! One boiling hot foot and one that’s so cold it burns?! How?!
And so on the days where I am too exhausted to wobble further than bed to bathroom, I still wouldn’t say that that fact makes it a Bad day. Healthwise, sure, it may well be on The Anna Scale of things. Yet today I’ve had a text from my cousin. And I’ve messaged a friend. My husband is safe at home with me during ‘lockdown’. The sun is shining. I have an internet connection which means I can look at social media even if I can’t engage fully with it today. My husband will likely wash my hair for me later. The house is quiet (our neighbours must be out!) There is lasagne for tea. For me, for the version of myself that I am today, I wonder how those things can make it into anything other than a Good or Nice day.
I have noticed recently that some people assume I, or another chronically ill person, cannot possibly be happy in a life dominated by illness. But your perspective shifts when you’re in the thick of it. It has to if you’re to find any joy and contentment in life when the things that made you who you were have gone.
So many people are defined by their productivity, something that’s not helped by a society that places more value on a person’s abilities than on their kindness, for example. I was too. The loss of identity I can still feel, because I defined myself by what I could do, almost ten years in can be enormous. But if I defined myself in terms of productiveness all of the time (and I do some days) my life would be miserable. My self-esteem would be non-existent.
In addition, I still believe I AM being productive, just not in a conventional sense. Even though I have no choice in the matter at all, being in bed and resting IS productive in my eyes. It in impossible to push through and get up and dressed and do any of the things that need doing or that I’d like to do. Impossible. And so what good would it do me to lay here wishing for something different than what I’ve been handed today. In resting, my energy stores are slowly replenishing. That’s going to help me digest food easier for the first time in a few days. It’s going to help the symptoms related to exhaustion (the blurred vision, nausea, inability to read or walk or breathe easily) to calm down a little. What’s not productive about that?! Your mindset shifts. You come to celebrate and view things as wonderful achievements; things that you’d once not even registered as being ‘things’ at all.
Posts from over the years that touch on this a little , and sometimes show how my perspective is ever-changing: Better than yesterday, worse than tomorrow, Human Being vs Human Doing, Setback Survival, The Fear, Sink or Swim
M.E. myself and I 
Welcome Delores. Nice to meet you x
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Hello Anne, Hoping today is treating you kindly
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Dear Anna, Thank you so much for your message. Yes, today did treat me kindly. My gardener came today and did quite a lot of shopping for me. He’s helping a lot of people at the moment in the lockdown. He’s a real hero. Best wishes to you. And thank you for all your posts, I really appreciate them. With all best wishes. I hope your event on ? 17th May goes well xxx
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I am so pleased he’s been able to help you out in this way Anne. What a kind man. Thank you. I’m getting everything as organised as I can so I can enjoy lots of cake on the day!
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Thank you Anna, I really needed to read this today!
Having only been diagnosed in January (after becoming ill in September), acceptance is something I’m still working on. Reading this has helped me understand that I need to stop being so hard on myself and learn to use my not-so-good days to rest and recover.
Thank you.
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Hello Melanie. I’m so sorry you have had to join our chronic illness club and that you must be suffering a lot, and in lots of ways, as a result of being ill since September. It’s a real learning curve isn’t it!
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Really helpful to read this and remind myself that resting is SO important on those leg aching can’t move days. I am SO happy to see your guinea pig, I can’t think of any better therapy/company. Does she talk to you?
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I’m so pleased it might have helped even a little bit Maureen. Delores sends her guinea pig love! She is such a character and chats away and even purrs when she’s happy. She also grumbles when she’s not!!! We have two other guinea pigs too. I must share them on the blog for you to see
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Id love to see them. I miss mine a lot. I love their noises and their stillness until they run.
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Thank you for this Anna, being happy while chronically ill is one of those things that many healthy people seem to struggle with. Some, I think are just plain terrified by the thought of the limited life – people’s inappropriate responses to ‘lockdown’ are a case in point – that loss of lifestyle can be devastating. Then there are those bursting with strength and energy who just can’t conceive of being unable to recover. I believe it is these latter ones who tend to come across as judgmental towards the chronically ill. This is why I think that sharing experience like you do is so important, the message seeps out there and can give comfort to the fearful and information to the ignorant. On top of that the others like me who are also living this kind of lifestyle (although in my case much less severely than you) also gain comfort and knowledge. So I say thank you for the blogging (to the tune of Abba’s Thank You For The Music). I hope today is a good one, whatever shape that takes
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Hello Carol. Thank you so much for your lovely comment. You’re so right – the implication that we’re not getting better because of some kind of weakness on our part is the nicest thing to hear. I think we’re amongst the strongest people around! I’m not sure many people would be quite as resilient as we all have to be. Hoping your day is a nice one too. Today is already going far easier on me than yesterday so that’s lovely
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Hi Anna
It’s coming up 4 years for me and I still find it hard to accept. It’s nice to know I’m not alone in how I now manage my days, although I am crashing more with teens home and partner. The past few months I have started experiencing the numb /pins and needles in my thighs when walking short distances which is scary (I use wheelchair for outing) your post has helped me feel less guilty for lying down most of my life xx
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Hello Michele. The acceptance comes and goes doesn’t it. It’s such a huge thing to try to accept so it’s no wonder we have good days and not-so-good days with it. ‘Lockdown’ is proving hard for those of us who need more peace and quiet isn’t it. And with children at home (and homeschooling!) it must be very difficult right now. I’m glad my post might have helped even a little bit and I’m hoping today is a easy and a nice day for you
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Thanks x
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It’s good to know that I’m not the only one who tries to live by persectives, not easy to explain to friends and not worth the effort(diplomatic for bother) but I feel a bit of a heel at the moment when people are complaining of being in the house for A FEW WEEKS !!!
In the bigger scheme of things, I say “we can’t complain for, we are warm and well fed and the sun is shining.” At the same time, I am trying to keep things in perspective such as, knowing how pleasant a rare shower is but also very much aware of its costs.
At the moment during ‘lockdown’ when I remind friends (who only know me through one cheerful phone call and not aware of the exhausted lump following) that they are not ‘locked in but keeping safe in own home’ … for a good attitude helps them to cope. When ‘plans for the day are discussed’ I try to encourage them but knowing my plan is simply – to stay out of bed.
You explain it well that we have to remind ourselves that resting is not doing nothing but helping to achieve something later in day – my word for it is enabling. It enables me to enjoy the company of my husband or watch a tv prog (instead of going to sleep literally sitting up as programme starts).
So, thanks for the reminder … not only one living in this crazy world and I don’t mean with the virus !! TAKE CARE xxx
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Dear Anna, I totally understand that you, when asked, cannot list your symptoms. I am totally the same. I just am completely unable to list the symptoms I have. If I write a list beforehand, which I find exhausting, the doctors don’t listen. They don’t like me reading from a list. We are all with you. I am tired this evening. My gardener came today. He’s done a really good job weeding in my garden. I hardly had the energy to thank him. My best wishes to you x
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Best wishes to you too Anne. I can totally relate to the symptom list that seems to be a waste of our precious energy when we go to se our GPs. But well done us for trying I think. I’m glad your garden is getting some TLC. My husband has been pottering about sorting ours out and it’s lovely
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I can really, really relate to all that you’ve written in your comment. Thank you! It seems there are lots of us feeling the same way.
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