Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used to the noise he manages to make when asleep. How any human can make such a racket, that clearly has to be causing pain in his throat, but still stays asleep has been a constant surprise to me from the first night we spent together, unfortunately the older he get the louder it has become. I guess we all have our personal flaws, but I have to say I am glad I am 17 years older than him as nature will ensure that I won’t have to listen to it when it reaches it’s peak.

I still haven’t spoken to my brother, I just seem to be putting it off more and more, I know for a fact that I would far rather send him an email, I do have his email address, but I don’t know if it is still active or if he ever checks them. I have never bought a printer as they to me in general seem to be a quick way to spend money and creating more and more rubbish to destroy. I know for a fact that most people use them to print out web pages rather than just bookmark them, other than that a once in 5 years requirement for a printed letter, they appear to me to be nothing more than a huge waist of money. I know all to well that my hand writing has deteriorated to the extent that I pity anyone who even tries to read it, so I now find myself stuck in a position I really don’t like. He has put me in such an emotional situation that talking is going to be a huge mine field, I doubt that I would get past a few words without busting into tears and getting more wound up by the minute. An email would really be the answer as I could then plan out exactly what I want to say to him and to be able to word it so I don’t make the rift any wider. Although the letter he sent to me claims to be written by him, I know it was actually his wife who wrote it, it wasn’t hard to work out as Brain, just like me, has dyslexia, his is worse than mine and I know for a fact that his hand writing is atrocious. Right into his early twenties he could just about sign his name, I know because I had to fill in a form for him as he firstly couldn’t read it, then couldn’t write in the boxes provided. I am actually really proud of him as he has managed his problems wonderfully and has a great job, but regardless what he thinks, he got this situation with our mother, totally wrong.

I guess that the hardest things in life are those times when you are being pushed out of your comfort zone. I know totally now that it is my emotional problems that are stopping me from just picking up that phone and calling him. On the two occasions in the last week or so that I have actually picked up the phone and dialled his number, the work up to it was unbelievable. I can’t work out what the biggest hurdle is for me, I hate the phone at the best of times, since I have been housebound I have used it less and less. If I am honest, I guess that I am loosing a lot of what are called social skills, combined with my memory, speech problems and lose of control of my emotions, talking to anyone I haven’t spoken to for a while is a nightmare. I know that I don’t live totally on my own, but the things I can say and the way I react are all thing that Adam is totally used to and he knows how to deal with my memory and speech problems, others don’t and they usually wind me up, making it all worse and worse. Add into that the simple fact that like everyone on the planet I don’t want to embarrass myself, well no one likes to make an idiot out of themselves.

This month sees the start of my 7th year at home and unless you have lived like this, for that length of time, it’s hard to put into words what exactly happens to you when it comes to dealing with people. I know that Adam made such an effort to get away from work and be here for the entire time Teressa and John were here, as he knows that I needed him here just to put me at ease. When I am on my own, everything becomes harder to deal with, including people that I love. Adam has become more than just my husband he has become my social crutch, the person who without, I would simply drop in to a world of fear that screws me up big time. Adam can’t be on the phone at the same time with me, I am totally on my own! I never thought that I would need anyone as much as I need him for almost everything I now do. Yes I can sit here by myself when he is at work, that is very different, I am then in my own world and it’s safe, add in someone else, here or on the phone and I totally loose it. I never thought that a time would come when I am happier hidden away with no face to face, or even voice to voice contact. My collection of conditions has eaten away at more than my physical body, it has destroyed the social me totally and my self confidence no longer exists. I am content beyond belief in what is now our own little world but any change has become a challenge beyond my remaining ability. I did half expect this to happen, when you are isolate it changes the way you think and act, facts that have been proved over and over again. I really don’t think that even if I were able tomorrow to step out into the world by myself, that I would be able to do it without Adam welded to my side.

Picking up a phone may sound like a tiny thing to you to do, but to me it is incredibly hard and so stressful that I keep trying to work out if the damage that stress will do is worth the results. I’m not just talking about my brother here, I am talking about every phone call I could be asked to make, like the 8 month process of getting out electric sorted out, something that should have taken a week. Take the combination of everything I have written here and well you might have a new glimpse into the reality of an illness that can only do one thing destroy.

6 thoughts on “Glorious isolation

  1. New reader here with [kind of] dysautonomia…searching for a diagnosis again.
    Does being online help the social situation at all?
    In regards to your last post…I don’t really see Christmas or New Years as too big of a deal, either, but Happy New Years to you!


  2. Good luck with that phone call. I had a similar situation with my father and in the end I wrote to him. Unfortunately he wrote back saying he doesn’t want any contact under the terms I had set down. So I have left it. I know that speaking to him is almost impossible as he doesn’t have the patience to listen and easily gets angry. With family like that, it’s not easy, no matter how the contact is made. I hope that you manage to get the call out of the way soon, as the worrying about it will no doubt be stressing you out. xxx


  3. its at times like this that I miss the good old floppy disk you could always copy it onto a floppy and adam could print it off in a cyber cafe or get an admin girl at work to print it off as a favour but without that floppy option the only other thing I can think of is either email it to someone you or adam know who has a printer (including myself if that would help) and get them to print it out and send it to you so you can forward it on or copy it onto a CD and maybe adam could find someone at work to print it off for him? I know that I would be lost without my printer especailly as my writing has always been terrible but it has got worse since my MS kicked in. I like you am not really one for talking ont he phone I can express myself more by writing and rereading what I have written. If you would like me to print it just message me and I will send you my email address so I can print it and post it to you πŸ™‚ HUGS


  4. I am going to try something out first to see if I can get it to him myself first. I have an email address as I said that I’m not sure about but I am going to email him if I don’t get a response I will then send it to Adam’s work email and he can then print it and post it for me. I am going to be hard on myself and get it done this weekend, no excuses. Thanks for your offer it was really nice of you. (((Hugs)))



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