Things Just Aren’t As Good As You Think They Are – Sorry

People, in general, are very nice. People, in general, only want the best for you. People, in general, care that you are ok. People, in general however don’t want to hear bad news. It is much easier to support a person when there is something positive to say about them. It is harder to support a person when something negative is happening. That doesn’t mean people don’t want to offer their support, it is just harder to give.

Over the last two weeks I have come across a new emotional aspect to my illness, one that I hadn’t expected. For about two months I had been making solid progress. Every week I increased one of my activities by 10% and was able to consistently do this. I had gone from walking about 0.5 miles with a break half-way to walking 1.15 miles with a break half-way. My friends and family were so proud of me and so happy for me. I was so very proud of myself and so very happy for myself.

Every few days I would speak to my dad and he would tell me just how well I was doing and how great it was that I was making progress. He was so supportive of me and reassured me that it didn’t matter that progress was slow but what was important was that progress was being made.

My boss was delighted that I was making progress and was more convinced than ever that I would be eventually back at work and eventually working full-time.

Everyone had been so supportive for the first six months when progress was extremely limited and indeed for the first couple of months when my health had only gone backwards. So many people had worried about me and offered me advice (some just plain ridiculous but appreciated). I had felt that I had the world behind me egging me on to recovery.

About two weeks ago my health began to slowly go backwards again. I had reached a plateau in progress but hadn’t consciously recognised that I needed at this point to stop and consolidate my progress. For two weeks my health has been slowly going backwards. Old symptoms such as pain had begun to slowly return. Walking my now 1.15 miles every second day resulted in fatigue, breathlessness and weakness. It took me two weeks to realise I needed to go back two weeks on my progress and stay there until I felt I was ready to start making progress again.

This isn’t a relapse, not quite, but it is a stopping of my progress. Progress I (and my family and friends) had been so very proud of. The progress that had given me and my family and friends such confidence that recovery would eventually be possible. During these two weeks as my health slowly dis-improved, family and friends have continued to say how proud they were of my progress. How great it was that I was making all these big steps. Wasn’t it great I was feeling so much better?

The problem therefore that I came across, that I hadn’t expected, was how do I tell these wonderful people that this progress they are so proud of me for has stopped? How do you disappoint people? How do you say something that will make them worry? I had a slight sense of failure. I was the one who had pushed things too far and had caused myself to go backwards. I was the one through my blogs and other methods who had filled them with such hope and happiness – how was I going to dash all of that?

My husband of course had known I was pushing it and has constantly been trying to convince me of this and encouraging me to slow down. It was of no surprise to him therefore when I had to go backwards slightly. He does not see this as failure and in my heart of hearts I also know I haven’t failed. I have always said to anyone that would listen that M.E. is a fluctuating illness, that my progress would inevitably meet some obstacle it would struggle to get over.

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I knew this but I still felt I had failed. Telling others, who unlike my husband, weren’t physically around to see how I had begun to struggle again was hard. They seemed so happy in their pride in me. They seemed so happy in their hopefulness at my progress – I just didn’t want to destroy it.

Of course my reality was that I needed to tell them. I needed their support and by not telling them they couldn’t provide me with the type of support I so very much needed. Their constant refrain about how great it was that I was doing so well was in fact (unintentionally) not support at all but undermining my confidence that I could bounce back from where I was.

Of course my telling them didn’t make them be less proud of me or less confident that I wouldn’t eventually reach the point of some form of recovery. They quite logically said that I had always expected the road to recovery to be potholed. They quite logically recognised that if I had made such progress before – I could make such progress again. I am sure they were disappointed and sad for me but it didn’t alter their support or love. For this is all that really matters.

M.E. is a disease (perhaps like many others) that constantly throws new emotional hurdles at you. You get your head around one hurdle then bam you are hit in the shins with another one. At times it can feel like the emotional aspects of this illness are harder to deal with then physical realities of it (though at times it is the other way around).

I have always argued that openness about the illness is key to helping people understand what support and how much support you need. Openness is however something that is very difficult to consistently do. As humans we have innate desire not to disappoint or worry others. Often being open requires you to deliberately disappoint and worry people. People need to know however your reality – without this they are ultimately headed towards an even greater disappointment.

I had been dishonest with myself, I had known I was pushing my baseline and yet I had allowed myself to continue. Desperate that when we went on holidays today that I would be able to do so much more than I previously could. I had been dishonest with others by allowing them to continue believing I was making great progress. If I had allowed this dishonesty to continue, would it eventually have been unsurprising if people had begun to distrust me when I later said I was doing well – even if this was true?

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Being open therefore is crucial. People, especially those close to you, need to know your reality, where you truly are with your illness. It may not be where they truly desire you to be but that doesn’t prevent you having a responsibility to be honest and open to not only others but to yourself as well.

15 thoughts on “Things Just Aren’t As Good As You Think They Are – Sorry”

  1. As usual so perfectly explained Karen.
    I am a constant actress to most who know me, yes this is absolutely to avoid the what i call oh dear me attitude which i so despise, but the risk is i am lying to those who should know how it is. And not spreading the awareness i know i should be.

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  2. Thank you Karen. You’ve explained the journey so elegantly once again. While I’m still working on naming my ailment with my doctors, I’m on a similar journey. While perhaps physically you have “dis-improved”, I “hear” your emotional voice and wise acceptance voice in your words. For me, the fluctuating wellness and learning that I cannot always control the outcomes has been difficult, particularly when it follows times of improvement and the “you can do this” or “you are back in control” self-talk kick in. However, it has forced me to look at other aspects of myself. I’m becoming more comfortable “sitting” with disappointment and grief, having both “positive” and “negative” emotions at the same time (rather than trying to “drown” the negative), hearing the lessons & wisdoms these non-cognitive domains give me, being more honest with myself & others, and seeing improvement in other areas of myself amidst physical “dis-improvement”. I “hear” this in reading your words as well. Take care Karen, and thanks again.

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  3. Well, Mrs. Ironside, it is time to hear the opinion of the fellow hiding in the bushes:
    I am not surprised that you have taken a ‘backward step.’ Furthermore, I do not feel let down, disappointed or otherwise grief-stricken on your account, so do not bother to waste sympathetic or apologetic gestures on me. WHY? Because your attempt to drive that poor Snail all the way to Jerusalem at over 2 mph just isn’t on, and you ought to have known/realised that. Karen, kindness to Snails is all-important in your situation. They have been around on this planet far longer than us humans; they live in a different timescale. There is no word for ‘Hurry’ in Snail language. So, even if Jerusalem may seem a long way off, travel gently with a steady, positive, cheerfully optimistic Snail for company……………
    from Victor in the bushes.

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    1. Victor, small problem, maybe big issue…. snails never go further than 1km from their birthplace.. something like frogs. So that’s hardly encouraging our karen. Enjoy the wild atlantic way. Anne

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      1. Hey! adonaldson1498 whoever you are: One Snail could not possibly be expected to go all the way to Jerusalem. It requires multiple Snails, all suitably well-treated, used in sequence. (How did 1km. of frogs get into the picture?)

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  4. Well said, Karen. Isn’t it funny that we sometimes feel compelled to apologize? Because seriously, what is less in our control than our body’s wrestling with illness? Figuring out that progress was not in my control – that I didn’t, couldn’t will myself to improve, that my recovery from all those colds and flus I’d had growing up was my body doing its job and not my will – that was a revelation. Didn’t do a great job of applying it for a long time, but just knowing it is helpful.

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  5. Sometimes stopping still for a while and taking a breather is as much a part of recovery as pushing on and making obvious progress. Hopefully your friends and family will learn to see your current plateau as your body gathering its energy ready for the next step. It can be so hard to admit to loved ones that progress has halted, worried that we might be letting them down, but you are absolutely doing the right thing by being honest with them and yourself.

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  6. Just saw your blog and wondered how long have you have ME?
    For me the first 10 yes were crash/ improve/ crash. I treated it like any other illness which is a huge mistake.

    After 10 yrs. I realized I was hurting myself and started pacing not pushing. That has helped overall the last 16 years but I wonder if I would be less I’ll now if I took that approach from the beginning.

    Also , you can’t live your life for others with ME. Unfortunately you need to learn your limitations and stick to them even if it’s upsetting to others. Not doing that I think is actually a form of denial for all involved, understandable but not beneficial. You and they need reasonable goals and expectations of life with this disease, not always easy to come by.

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  7. Obviously you’ve captured an important dynamic with recovery – the mind always wants to go faster than the body 🙂 I’m guilty of it many times and have paid the price also.

    Have you considered tracking a quantitative metric related to recovery? E.g. HRV which is used by athletes to monitor their recovery

    While relying on others opinions around you can get you out of your head and drive to get back to life, sometimes their hopes or ideas about M.E. can distort reality just as much as you.

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  8. This post resonated with me so much Karen! I recently had to break it to friends and family that despite some progress for a while I was starting to notice a few steps back so I can really relate to the feelings you describe. Although I was anxious about bringing this up, I felt a lot better for sharing it with them. I completely agree that open-ness is key!

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  9. This post made a lot of sense to me too. I have constantly found the explaining to people to be one of the hardest, frustrating and most exhausting things over all the years I’ve had ME/CFS. The brain fog makes it even harder of course !
    And my husband does not help one bit when it comes to helping me explain it to people. He plays it down, glosses over it, even makes a joke about it at times, etc.
    His reasoning being that “people are bored, not interested and don’t really care” . . . !
    And although I find this totally depressing and soul-destroying , he is probably right. No doubt due to the length of time I’ve suffered with this condition – more than 25 years now.
    Ps. I’m sorry if this is a negative comment.
    All the very best
    Anne

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    1. I don’t think there is such thing as a negative comment as long as it is true. I guess after 25 years it must be hard for your friends and husband to still see you suffering. I believe if they are still in your life then they definitely care and are definitely interested – otherwise surely they would be well gone by now??

      My husband makes a joke about it too but I think that is often how we deal with the hard things. I remember starting a unit about the Holocaust with some 16 year olds. 4 or 5 of the boys started laughing at the pictures. After I spoke to them after the class had left. They said they didn’t find it funny but it was so far out of their comfort zone and so upsetting that they didn’t know who to react or deal with it. I wonder does your husband feel that way? He is also still there after 25 years. I’ve heard lots of stories about husbands who can’t cope and just run. Playing it down and glossing over it does no good though does it. I can only assume you guys have talked about this a million times.

      What do I really know though – I’m only a newborn at this in comparison to you.

      Thank you for reading my blog and your kind words.

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How do you feel about this topic? Do any of its ideas resonate with you? I'd love to know your thoughts! K

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