Thursday, 20 September 2018

Human Barometer

We often joke in the EDS community that we are the human equivalents of
Barometers. Any sudden changes in air pressure and you’ll find us suffering
with a myriad of problems such as migraines, excessive joint subluxations
(partial dislocations), dislocations, joint and muscle pain. This week I feel
like I have had them all.

Monday started with a bang, I felt like someone had smashed me in the
face with a shovel. This lead to me spending most of the morning lying
in a darkened room. Until I suddenly had a brain wave and decided to see
if putting a soft neck collar on would help at all. I have always held a deep
suspicion that my migraines are triggered by my neck being hypermobile,
I get a lot of pain and stiffness in my neck overnight. I always wake up with
a migraine, very rarely do they start when I am up and about during the day.
Within minutes of putting the collar on my head pain had reduced by half.
Within two hours I was pain free but exhausted and still feeling sick.
However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx - right between
my bum cheeks to be honest, hence why there are no photos! I have had
massive problems with my coccyx this year after slipping on the snow and
ice back in March. At the time I was much more worried about my head as
I managed to crack it on the back door step. The lasting injury has been to
my coccyx, which has resulted in me having to buy special cushions to sit on
and to lie down in the lounge whenever I can to take the pressure off. I've
lost 2 ½ stone over the year and you’d think that my joint pain would be getting
easier but it isn't. The coccyx pain is very uncomfortable, Tuesday it joined in
with severe lower back pain which lead to me giving up and going to bed a
4pm. Only after applying my Tens machine for 4 hours did I have any notion
of relief. It really was exceptionally painful and made me feel sick. No matter
what pain medications I took the pain remained causing my buttocks and the
backs of my thighs to spasm. I will be honest I really didn’t know what on earth
to do with myself. It wasn’t even particularly stormy here yesterday just a bit
gusty but obviously the weather and the air pressure were drastically
different to the stable weather - but way too hot in the summer.

Today (Wednesday) the UK is being battered by another storm and my body
feels like it spent the night being battered by a shovel. Since waking various
parts of my body have been covered with a hot water bottles, with very little
effect other than to make me sweat a lot as despite the fact the weather is
very windy outside the temperature is very warm.My body is overheating
constantly at the moment which is leading to me dripping with sweat at the
drop of a hat. Either that or I have hot the menopause! So what hurts today?
Today as most days I have pain in my lower spine and coccyx, my fingers are
swollen, stiff and sore. My ribs feel like someone decided to attack me with
a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with
a with a baseball bat whilst I slept and the soles of my feet feel like I’ve been
hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the
constant waking up last night to take more pain relief. This is not a good day
but I have been expecting a run of bad days after having a reasonable week
last week. It’s the way it goes plus add in a few storms and my body reacts
badly to the change in air pressure.

I forgot to mention that my shoulders are slipping in and out of  their sockets,
making a terrific crunching sound as they do. Today nothing other than just
surviving will be done. When I say just surviving I mean lying on the sofa hoping
at some point the pain relief I have taken kicks in. There will be no enjoying myself,
doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be
followed by several if not more bad. Which is why when its good ( when I say
good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it.
It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing
pain that escalates as the day progresses. Sometimes it takes my breath away,
it makes me miserable and snappy. I hate the way it can completely change
my personality from laid back and kind to nasty and angry at the world.
Unfortunately those closest to me bear the brunt of it, with me losing my
temper very easily. A technique I have learnt to avoid me lashing out is to
just go quiet and not speak. That way I can be horrible to those I love the

Thursday brings more storms and a trip to see my hospital consultant which
is more than an hour away by car. It’s a crack of dawn appointment as well
so 90 minutes after this blog post is published I will be on the road. I will have
had to get up at around 4am so that I can pace myself whilst getting washed
and dressed. I am not looking forward to using my wheelchair as sitting upright
at the moment is so painful, added in the 2 hour car journey (there and back)
and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven't seen him since March,
it’s a necessary evil - he's not evil he’s lovely, just the journey is torturous. I
have developed numerous issues since I saw him last and I need to get to
the bottomof them. One of them is the possibility that I have got Sjogren's
Syndrome ( I have had dry eyes for years but the eye drops are no longer
working, my mouth is dry so I am getting numerous cavities and my tongue
is sticking to the roof of my mouth when I talk). I need this to be looked
at as my eyes are just so painful and with my pathological hatred of the
Dentist I need the cavities to stop. More information on Sjogrens Syndrome

This is such a down beat post and for that I am sorry. I had such a lovely
week last week seeing friends and managing to make some bits and pieces.

The Christmas wreaths had been half made since August so I managed to
finish those by adding hanging loops and bows.

I also made a number of Travis bags.

I am really starting to hate blogger if you are too please visit my WordPress
site at I write my posts in Google documents,
yet when I transfer them to blogger the text is wider than the page so hence
why the writing is weirdly placed. It turns my text grey for no reason at all and
this week has double spaced the last couple of paragraphs. Despite it not looking
like this on the page where I transfer my blog post over to. Blogger is just shite and
I am getting very close to no longer posting here and moving everything over
to my WordPress platform.

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.