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 www.themyastheniakid.com. 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.