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

conversation.

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

deafening.

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

confinement.

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.