I think I am going through what a lot of people with chronic illness / chronic pain
go through where they wonder if they have turned into a bit of a moaner.
Obviously a lot of us have pretty reasonable things to moan about but I am
started to get paranoid that maybe I have crossed an invisible line from
previously what was an acceptable level of moaning to an unacceptable
level of moaning, for those whose lives aren’t blighted by chronic illness.
I usually say very little about my health on social media, its like my own dirty
little secret that most days I am wracked with pain or have ptosis or feeling
anxious or whatever the hell is going on that day. When I do post it’s usually
because things are much worse than normal. I have posted a lot this summer
about my health because things have been the worst they have been for a
long time. The heat wave although helping my joint pain no end made my
PoTs symptoms absolutely horrific. Every movement kicked off palpitations,
my blood pressure was horrendously low in the 80/70 range most days.
Leaving me feeling faint and exhausted. I could barely manage to walk
some days. Many, many days were spent in bed feeling very sorry for
myself. And do you know what? I get very angry when I feel sorry for
myself because I feel weak and vulnerable.
Regular readers will also know that my CSF Leak has come back, although
its not at the level it was in 2016 I have had several days over the last few
weeks where I have been unable to leave my bed because the pain is so
intense. It makes me want to vomit. I described the pain to someone as
feeling like both my eyeballs had been removed and dipped in acid then
rammed back in the sockets. Whilst the back of my head feels like I am being
beaten to death with a shovel. Now if you were experiencing those levels
of pain do you not think, honestly that you may mention it once or twice?
Or however many times that you want to. Because believe me when you are
dealing with that kind of pain you just don’t care what people think.
Along with the pain the CSF leak brings I have also had some additional
symptoms like vertigo that only goes away with lying flat. Losing my balance
very easily and being unable to bend down / lean forward repeatedly as this
is triggering the leak headache. As I say I am lucky it’s not as bad as it was
in 2016 but it’s bad enough.
In the last few months I have also had my migraines return, I have ended
up having to take amitriptyline every night as a migraine preventer. It’s
kind of working since taking them at the start of July I have had one
migraine. However my migraines have come back as if they are amped
up on steroids, I have to lie in a darkened room, vomiting into my bedroom
bin because I can’t get up.
Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had
an intense amount of pain in my toe. It actually hurt to touch the nail.
I lifted up the side of the nail ( I had both sides removed over ten years
ago due to repeated ingrowing toenails) and the nail came off in my
hand. It hurt but it didn’t hurt anywhere near as badly as it had done
just before the nail came off.
Have I bored you yet? Because believe me I am bored with it. I feel like I
am in a never ending soap opera where shit keeps happening and I have no
control over it. So yes I may have mentioned on social media a few times
over the summer how fucking awful I am feeling and to be fair I haven’t even
touched on about 50% of the health stuff that’s been going on of late. This
is just the stuff I can think of off the top of my head.
Admitting you are sick on social media is a dangerous game, post happy
cheerful stuff and you are judged to be not as sick as you make out. Post
stuff about how fucking awful you feel and you’re moaning. You can’t win.
I don’t want my life to revolve around my health conditions but there will be
periods of time when it does because all I can do is just keep my head above
water. To feel that I can’t express what is going on in my life, when I can go
weeks where the only person I see or talk to in the flesh is my husband, just
seems cruel. It’s not that I want someone to talk to - and thank you to all those
who have offered me a safe place to vent. It’s just sometimes even I don’t
believe what is going on health wise. I don't think I have ever been completely
honest with anyone because there is always more than one thing going on
with me. I always just give those closest to me the headline news not the
Any way that’s me, I am bored with this subject already and if I am bored
with it I have probably sent the rest of you to sleep also. Mr Myasthenia
Kid has been on holiday the last two weeks ( well just over ). It’s the longest
holiday he has taken in years. We’ve really enjoyed the time we have spent
together. We’ve managed to work on a few projects together, which I first
touched on in my blog post upcycling.
We had so much paint left that we decided to upcycle our lounge coffee table
taking it from this - those dots on it are from dog drool
Jay did the lions share of work because I am just not physically able to.
I did a small amount of painting, basically just catching the bits that he
missed. We have painted the stripped pine with hard wax oil which means
the wood is now water resistant and has a lovely finish. It took several days
to dry and for a while we were concerned that the top of the table felt very
rough. However as the hard wax oil has dried its left a silky smooth surface.
Jamie’s work also got the thumbs up from John Scott and Jo Carter on
the Sewing Quarter. I don’t think I have ever seen Jay so proud as when
they both said how lovely the table looked. I am very proud of him as it
was no mean feat sanding the table top down.
Not happy with doing just the bedside cabinets, the lounge coffee table
on bank holiday Monday 27th August 2018 he also painted our kitchen chairs.
They look fabulous and make such a difference. And we still have paint left from
the 750ml of Scotch Mist Frenchic Furniture paint.
I also got a shout out on the Sewing Quarter Saturday 25th August -
cheers John xx