Thursday, 13 September 2018

Solitary confinement

I’m used to my own company, I am in fact quite a solitary character. I don't
need to be surrounded by other people, as I can entertain myself. However
sometimes the loneliness of chronic illness really gets to me. I am having
a wobble.

Mr Myasthenia Kid had two weeks off work (as annual holiday) in August,
it’s the longest he’s taken as holiday in years. Normally he takes a week
here and there throughout the year. Always holding some back in reserve
in case he needs to take time off to look after me or take me to medical
appointments. Usually by the end of his weeks holiday I am happy to send
him back to work, as I have my own routine and ways I like to get stuff
done. This time however I am finding hard to adjust to not having him
home with me. We had a lovely two weeks together, laughing, talking
and generally just being together and now the house just seems
so empty and quiet. It’s been quite hard to g back to it just being me for long
stretches at a time.

It is really hard to explain how empty the house seems, it’s not like he takes
up lots of room or that he makes loads of noise. It’s just I got very used to
his presence and having someone to talk to. When you are chronically
sick and virtually housebound your world gets very small. You only see the
people who can be bothered to make the time to see you. Being below
retirement age all of my friends are working and have families of their own,
so I am very grateful for the time I do get to spend with them . With the
pace of life these days, it’s very easy to be forgotten about, out of sight
out of mind. I found that back in 2008 when I left work, that all these
people who I had known for 12 years who I believed were my friends, just
disappeared. They think a quick comment on your facebook page is a get out
of jail free card, it doesn’t replace seeing someone in the flesh and having a

Most of my friendships are now online and I have made some truly wonderful
friends. Particularly on Instagram amongst the crafting / sewing / creative
community. I am lucky to have got sick in an age where to talk to someone
I just have to open up my computer but it doesn’t replace the physical presence
of another human being. I am grateful for the online friends I have but I would
imagine they would agree that proper physical contact with other human beings
trumps any other contact with the outside world.

I have always been quite a solitary character, my own company isn’t something
that has ever daunted me. In fact there are days where I cherish the time I
spend alone. I like being able to step back from the outside world but I also
like to spend time in it or as close as I can. I like a balance of both but due to
my health being so utterly rotten this year, I have barely seen anyone since
the end of June. I have literally gone weeks and the only person I have
spoken to is Jamie. Can any of you who aren’t chronically sick imagine
what that is like, that the only contact you have with the outside world is
with one person? It’s no ones fault, this isn’t a dig at any of my friends
as it has been me doing the cancelling due to not being well enough. Is
it any wonder now that after having two weeks of company I am finding
going back to being alone so very difficult? I am grateful that we have the
dogs but their conversational skills are very limited.

It’s hard to explain but my heart hurts with the loneliness and the missing
Jay. I know he’s only 7 minutes up the road but the house is so quiet it is

Every year around Christmas time there is always a campaign about loneliness
and the elderly. Every year I want to scream at the TV it’s not just the elderly
who are lonely in this country. There are hundreds of thousands if not millions
of people whose lives are blighted by illness who see no one for weeks on
end other than their caregivers or partners. It is assumed that if you are
aged between 18-67 that you are in work but there are many of us who can’t
work, who are housebound who are crying out for some company yet we are
the forgotten ones. I don’t know if it is because people don’t understand
chronic illness and can’t get their heads around the fact that there are working
age people, who through no fault of their own do not have the social outlet of
work and are just forgotten. It’s like we don’t exist.

I am extremely lucky I have friends who do come and visit me. I really
appreciate those visits and I hate it when I have to cancel due to my health
deciding to have a hissy fit. It takes a lot for me to cancel because I don’t
know when they will be able to visit again. There are lots of people in my position
who never see anyone. I know I am lucky, I am just sad this week as I am finding
it so hard to adjust to Jamie being back at work.

I know given a few more days I will have got myself back into a routine and I
will be used to being on my own again. I thank my lucky stars for my cyber
friends who are so supportive and caring. Even though I am shit at messaging
people because I am always in my own little bubble. I have an issue where I
think of someone, say to myself “oh I must message them” and two weeks
later I realise I haven't. I’m currently struggling with what day of the week it is.
Not because there has been a bank holiday it’s purely that I have no clue.
To give you an example of how bad it is at the moment, I had no clue today
was Thursday and was quite surprised when I started to get notifications on
my blogs Facebook page. It was only when I looked I realised that my blog
post for this week had been published. I tend to write them in advance and
schedule them in to be published automatically. This morning I had no idea
that it was Thursday. I do however know who the prime minister is and what
year I was born! Just in case anyone is concerned about my mental status.
It’s just the days are currently blurring into one.

I also know that the way I am feeling now is probably a reaction to all the
stress I have been under lately. My mum has had some pretty major surgery
that was needed out of the blue. Adrenaline has carried me through for weeks.
Now things are starting to calm down, I have the time to spend analysing my
feelings because during that time period it was just getting through that day
that mattered. It was a frightening / stressful time. In a year of horribly
stressful and sad events. I know I just need to get back into a routine and
allow myself the period of adjustment instead of being so hard on myself that
I am struggling to adapt.

This probably  seems quite a depressing read, I’m sorry. I have just really been
surprised at the depth of feeling that Jays return to work has caused me. I don’t
think in the nearly 22 years we have been together that I have ever missed him
so much. Silly really as every night he is home, every morning he is here.
Just at the moment being in the house alone seems a little like solitary

P.s Its over a week later and I am back into my old routine.
I am enjoying the time I have to myself and have been really productive
on the sewing front.  I have also had a visit from some friends which was
really nice. Obviously I still miss Jay during the day but it's not like the deep
ache in my heart I had before. I  am much happier now that I have re-adjusted
to the time spent alone.


Carleen said...

I hear you. My world is small. My friends are few. My folks just don't do sick bc of their religion. Kids, dogs, and hubby are my everything. People really disappointed me as I got sicker. Extended family is absent and it's not even religion but just not understanding and/ or believing what I live with. That fucking hurts😐 Online people like you who share their hearts and minds bring me buckets of healing. Thanks for sharing. I'm not alone. You are not either. Hug that hubby and your other few precious ones. 💗

Rachel Morris-McGee said...

Hiya Carleen,
thank you so much for reading and leaving a comment. I was very frightened when I published this that the post would come across as naval gazing and self indulgent. However it really seems to have touched a nerve. So many people have contacted me to say that they too live like me. Where the only person they see for days / weeks on end is their partner or caregiver. It makes me sad that we are so easily forgotten by the rest of the world.

Any religion that doesn't understand illness is not any religion I want to know about. That is just incredible that the weakest and most vulnerable in society would be shunned like that. I am so sorry that you have to deal with that crap. I don't bother with my extended family. We have nothing in common and lots of them are what I call god squad. I have no time for people who tell me they are saying a prayer but can't get off their fucking arses to visit me.

I know we have never met but I am glad we are kindred spirits. I look forward to your comments, it's so nice of you to take the time. I really do appreciate the fact that you take the time to say something.

Thank you for letting everyone know that this post meant something to you. It's the first post in a while that has provoked such a reaction - all good.

Gentle hugs

Rach xx

Carleen said...

Right back at you, Rachel 😀