Am I moaning?

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

full story.

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

To this

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