Knock knock! M.E. isolation…

Cooooeeee! Anybody home? I know you’re in there!

M.E. and self-imposed isolation as the only way of coping.

I thought this subject was worthy of a mention as it is one of the biggest effects of M.E., particularly applicable to those of us who live alone.

Like the majority of MEites, I need my rest.  Right now.  This can be a highly distressing and totally instant need, or a sickeningly gruelling, sapping feeling, as if somethings unplugged your life force from the mains and where you know you must press on for just another few minutes to get the whatever finished; you are at the end of your tolerance for pain and strange sensations are coursing through you and your body is screaming for a lie down, threatening to collapse, when, out of the blue, the phone rings, or there is that unexpected knock on the front door…

Despite years of verbally trying to raise awareness in my ever decreasing social world, I’ve recently had to resort to some firm tactics and now have a new notice pinned to my front garden fence, requesting visitors to phone between set hours if they wish to drop by or even phone me.  It’s been a long time coming, but after most of my pleas were ignored, I just couldn’t cope with one more drop-in expecting a coffee or three and draining me for hours on end.  People mean well, they just don’t ever think the rule applies to them - because they are your friends.

I have had a 6ft fence built and lockable gates installed.  I’m that serious. The next stage is to sit on my front porch in a rocking chair with a shotgun on my lap - Hillbilly style and use it if I have to! 

I have severe insomnia, this can go on for weeks, months, years even.  I’ve always had it and it destroys me.  I need to rest, even if sleep evades me.  I keep strange hours.  My most productive time is very early morning and my rest time is mid morning, mid afternoon and late evening.  I’m not necessarily sleeping, I’m trying to. I also have chores to attend to, pets to care for and administration work to do.  I’m not being idle or standoffish, I just have M.E., this is what it does to a person.

The worst thing anyone can do to me is just turn up or phone me during these strange times. I feel extremely ill and sometimes am not even walking or talking well. The last thing I can do is make small talk or stand and listen to a visitor.  I see the mouth move, yet hear nothing much.  My brain is fried but you’d never guess by my well rehearsed responses and the fact that I don’t “look” sick. Inside I’m screaming to be left alone; isolation is all that is manageable…it somehow helps to be able to control too much stimulation.  Trips to the mainland are very rare these days.  I might leave the Island once in six months maybe, usually for a health appointment at a hospital etc.  These trips cause payback - severe relapse due to exposure to all the additional stimulation, busyness, noise, bombardment, pollution…

I need people to make appointments for the smallest things. I need them to not be late, to turn up as arranged and not let me down as I will be ready for them and already put in a huge effort to be so. I will have prepared my pitiful energy as much as possible.  I realise it sounds ridiculous and precious, but it is the only way I can function now and I had to learn this the hard way over the years of existing with M.E.  I need to plan properly to save up enough strength to cope with even short visits. 

The phone is probably the worst imposition and blessing all in one.  I now have it set to silent answer and have to remember to check it. If I write myself a stick-it note, I sometimes have no clue what it is as reading and my mashed potato brain don’t always compute!

I cannot have my rest periods disturbed at all any more. I feel selfish and rude, but I’m in an instinctive self-preservation mode.  I aim to be lucid around lunchtime, but with M.E. there is no warning of how severe a day will be as my experience of this wretched illness morphs moment to moment.

Usually by 6pm I’m totalled. This is when I can barely manage a conversation and I’m quite irritable because I feel so ill.  Unfortunately, it’s the only time I get to speak on the phone the my significant other on the mainland. He intuitively knows how bad I am by the quality of my speech.  M.E. ruins lives! 

It’s a difficult illness for non MEites to comprehend.  When I am able to get out and go to the shops on the Island, naturally I see friends doing the same thing.  They must be forgiven for wondering why I am such a recluse.  I used to try hard to explain, but these days I just give up.  People will say to me, particularly if I’m not using my walking stick, “You’re looking really well! Are you better yet?” They mean well of course and I won’t bore them with tales of the earlier paralysis or violent tremours.

I caught myself thinking the same thing the other day of another Island MEite!  The lady I’m referring to, is extremely ill with M.E. and one of the worst cases on the Island.  She looked happy, and the healthiest I have ever seen her… But, I know better - it’s an illusion!  It’s not taken into account that a trip to the local food store is a big deal when you have M.E. and is prepared for.  Of course we look better - it means it’s one of the better hours or days when we can achieve something. We have managed to get dressed, brushed our hair, maybe even put a little make-up on to hide the dark circles! It is a big occasion - going out to get basic provisions…

Brief chats with the locals are often the highlight of the week or month.  The body starts its weird M.E. thing…we must get home quickly before we collapse and back to isolation, the only place that offers some respite…it’s a high price to pay for a litre of milk, a loaf of bread and some human contact.  M.E. is demanding, contradictary and by very nature, isolating. You don’t mess with it…

2 Comments

Comments RSS

Leave a comment

Name (required)

Mail (will not be published) (required)

Website