“When will it ever end?”

“When will it ever end?” or Will it ever end?” is a recurring and ever so slightly desperate query on the RD support group site I belong to.  A few weeks ago, one of my eye buddies commented that his eyes have been stable for around eighteen months after three years of temporary sight loss due to diabetic retinopathy, numerous operations, sadness and anger.  But he went on to say that he knows the time will come when he has another bleed in his eyes and the bottom will fall out of his world once again.  This fear of further issues is one which those of us who have had multiple detachments and complications all share.  It’s unsurprising that we feel this way, considering that we’ve all lost a certain amount of vision already.  According to Moorfields Eye Charity, more than eight in ten British people say that sight is the sense that they would least like to lose.  (Presumably the remaining one and a bit people are the ones who have already lost their common sense.)

The fear and accompanying anxiety can be exhausting at times.  A month or so ago at work I was obviously looking particularly knackered, as a colleague asked me if I was having trouble sleeping again.  (See ‘To bed, perchance to sleep..? (Aye, there’s the rub!)’ for an account of my typical nocturnal experience.)  When I nodded, he exclaimed incredulously, “Well what are you worrying about now; you don’t have another Moorfields appointment until January!”  I thought it unwise to point out that, unfortunately, Moorfields is unable to issue a decree at one appointment commanding my sodding retinas to behave themselves until the next check-up.  I also thought it probably wasn’t worth explaining that in all of my waking hours, eye-related anxiety buzzes around my head to a greater or lesser extent, like a wasp waiting to sting.  So instead, I just sighed inwardly that frustrated sigh of, “Is it really that difficult for some people to understand?”  Apparently, it is.  When I told my Dutch eye buddy that I think our eye problems are the hardest thing to deal with in life, she said:

When I first had my initial surgery I mentioned that period as the darkest period of my life.  People stared at me like I wasn’t normal.  They totally didn’t understand.  From that moment I never mentioned it again.  I think that made things even harder for me.  The not being able to share, because no one ever listens really or even tries to understand; that’s what makes it so hard to cope with.

It’s my Dutch eye buddy who has been the latest person in our group to ask the recurring question, put specifically as: “Will it ever stop?”.  She’s already had three lots of surgery on her left eye and one on her right eye for retinal detachments.  A couple of weeks ago, after months of intermittent worrying that something wasn’t quite right, she was diagnosed with a macular hole in her right eye and is now scheduled for her fifth lot of surgery this coming Tuesday.

Fortunately, she’s since felt able to talk about her eye issues to a few people, explaining about what she can and can’t see and describing the posturing she’ll have to do after the macular hole surgery.  She told me what a difference it makes when people are interested and try to understand, and how it makes her feel cared for.  Having people around who attempt to understand unfortunately doesn’t make it all go away, but it does make it slightly easier to cope with.  Of course, this doesn’t mean that we need people to be constantly asking us how things are with our eyes.  There are many different ways of showing compassion.  Considering the fact that we can’t answer the question, “When will it ever end?”, I guess the only thing to do is to try and find better methods of coping with it.  With that in mind, if everyone could just send a huge beam of positive vibes across to my eye buddy in the Netherlands on Tuesday, I’d be very grateful…

 

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4 thoughts on ““When will it ever end?”

  1. Steve Rockey

    I totally get what you are saying. I feel the same about my mental health, wondering when the next crash will be and will I ever be well unless it happens to them a lot of people just dont get it. They blissfully sail through life in pig ignorance. All u can do is put a brave face on things and just
    Ignore their stupid comments but it does suck.

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    1. ejb117 Post author

      I think a lot of people with long-term conditions probably have similar feelings at times. I’ve learnt that if people react as you’ve described above, it’s best not to get into a conversation about it because you’re right – they just don’t get it and it’s hugely frustrating.

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    2. Alexandra Bright

      Hi Emma

      Tis me Alex the “new” star of Moorfields, congratulations for all monies raised.
      I totally get what you are “rambling on” about. I was about to say that having been discharged from Moorfields 18 months ago there is a natural end, well, at least from those hospital visits. In a funny way although feeling aprehensive about appontments, once they cease you have just lost your safety blanket. Your Consultant says”” everything is stable and you are free to go” it is met with relief and disbelief.

      For me I was lucky, I did not have to give up work or change my life drastically. That is not to say it has stayed the same. Far from it. I have worn glasses all my life 40 yrs and counting, so you would thing an eye test at the opticians is a walk in the park…… it has become my worst nightmare….. I just want my independance back,I still can’t drive despite having my short sight improved with cataract surgery but I forgot to say I have only one eye( other one lazy) and in that I had possibliy the worst detachment seen with full mauclar off. I was blind for several hours. I never do things by half. It took me a long time to understand it was not my fault. Thanks to councillors and medical invention I began to see a future. It is not years but for me months. I try and take each day as it comes…… the rest is too scarey for me to contemplate.

      I wish I did not have meltdowns every so often but they now seem to be part of me, maybe it is more frustration. I really did not think this is how life should be. I wish I did not resent individuals driving licence in their wallets or customers’ keys jangling in their hands having illegially parked outside my work premises. It still hurts!! I have gained and lost all at the same time. Trying to educate others as Steve Rockey says is near impossible. You have had surgery and your fixed…….. if only that were true………

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      1. ejb117 Post author

        Hey Alex – I think that taking each day as it comes is a good plan. As for the meltdowns, I think that unfortunately they come with the territory. From talking to other eye buddies I’ve learnt not to feel so freakish about my panicked days or times of despair and sadness, and terror of what the future holds. I think they’re all normal reactions. I can understand your frustration over the driving, but don’t give up just yet – remember what the optician said. At the end of the day, the most important thing is safety when driving, both for you and others. Not being able to drive is pants but there are ways around it. And the most of thing of all is your sight. Hang on in there – I think you’re doing really well considering everything you’ve been through. 🙂

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