My week

Over the last week I have been quite unwell, culminating in an

emergency appointment at the doctors surgery yesterday. As

is usual for me it wasn’t clear what exactly was wrong. I had

severe abdominal pain in the lower right quadrant - I’m no

stranger to abdominal pain, I have suffered with it for as long

as I can remember. I can remember countless home visits by

the gp where I was yet again diagnosed with a grumbling

appendix.

I don’t think what I had yesterday was my appendix - its still sore

today ( just not as bad). I think it is actually a cyst on my ovary,

the doctors found one in 2015 but as it was only 2cm in size

the protocol was not to monitor it. For years every few months

I would get a pain in my lower right side. Loads of times I was

convinced it was my appendix but after they found the cyst

I realised that this made more sense. I started to track when I

had the pain, it was always between the 20th to the 28th of each

month and would last a few days. However over the last six months

every two or so months the pain ramps up. I have a reasonably

high pain threshold and it takes a lot to make me go to see the

dr, let alone ring them up and demand an appointment. Normally

I’m the patient running in the opposite direction.

Yesterday I couldn’t stand up straight when it was at its worst

and when I was on the phone to the duty doctor I was curled

up in a ball on the bed. I didn’t just have pain on the right side

but the whole of my insides felt sore and were burning.  Thankfully

the duty doctor agreed that I did need to be seen and set an

appointment for an hour later. Thankfully Mr Myasthenia Kid

was day off so he could drop me down there. I also had a

pot to piss in ( ha ha ha ha!) my old gp used to give me a sample

pot to use when I suspected I had a UTI. I forgot yesterday to ask

for another one to replace it.

By the time I got to the doctors appointment the pain was

already decreasing. I felt a bit of a fraud to be honest. Whilst

I am typingthe pain is ramping up again, I’ve taken pain

killers so hopefully it will settle it again. I haven’t got a

temperature and today I am not feeling unwell. I don’t feel

right - I think all of us with a chronic illness or condition

know when our bodies aren’t feeling right.

Mine hasn’t felt right for a few weeks, initially I put it down to

anxiety, stress, then the heat. But I know in my heart of hearts

it’s more than that. It’s like the time I kept telling my old hospital

consultant that I felt terribly unwell, I didn’t know what it was but

he needed to listen to me. The arrogant twat didn’t, he sent me

reluctantly for blood tests. Five days later I got a snotty letter

telling me all my bloods were normal. Three days after that letter

he had to backtrack because my prolactin levels were stupidly

high. See I knew that something was wrong, never ignore

your instinct about your health.

My urine was dipped and nothing was showing. I then had to get

up on the couch and be examined. I knew it was coming, I made

sure that front and back bottoms were scrupulously clean as

I feared gloved fingers could be inserted into either orifice.

Luckily I avoided that one! My stomach was palpated, as is

usual the doctors always ask about the scar on my stomach.

I’ve had a scar on my stomach since I was 3 and a bit. It’s been

there so long that unless someone draws my attention to it

I don’t remember it’s there. Now that will probably seem

strange as it’s a horrific looking thing all thanks to EDS.

If I wasn’t such a lard-arse at the moment I may have taken

a photo to show you. The scar runs from around an inch

above my belly button to the top my pubic bone. It has healed

very wide around an inch or more at the worst places and the

skin is paper thin. I also have no sensation / feeling at all in my

stomach about 2 inches either side of the scar as the nerves

were cut ( I have had multiple surgeries). It’s caused me

problems in the past due to burns. A few times I have ended up

seeking hospital treatment as I have given myself a serious

burn injury and not noticed until the skin has gone black. Like I

said I have no feeling there.

The scar has also tethered at the end near my pubic bone. This

means the scar tissue has adhered to the muscle underneath.

It causes me no pain but means my stomach is divided into

two parts due to the tethering.

I showed the doctor on my abdomen where the pain was, she

felt it and I had to be peeled off the ceiling. At this point she

told me that she wanted to ring the surgical team at the local

hospital for advice as she felt it could be my appendix or

it could be an ovarian cyst torsion ( meaning the ovary was

twisting because of the cyst). Personally I thought with both I’d

be in more pain than I was. I declined the call to the surgical

team basically because I hate the local hospital. If I had

been in severe pain, vomiting etc obviously I would have

gone, I’m not an idiot. But I knew what would happen,

lots of tests, no sleep, idiot medical professionals

and sent home after being made to feellike a time waster.

At this point all I wanted was my bed.

I made the doctor a solemn promise that should the pain

intensify overnight that I would ring 999 and if it was bad

tomorrow(now today) I’d ring them. She wasn’t totally happy

but sheknew I wasn’t going to hospital. I have to add here

that even in that severe amount of pain my blood pressure

reached thedizzying heights of 115/80 with a pulse of 95,

oxygen 98%.

When my blood pressure is normal ( doesn’t happen very often

these days) when in pain I am normally in the 130/90 territory.

So that just goes to show you how low my blood pressure has

been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most

doctors take my blood pressure and you can see that they are

looking forward to giving me a lecture about my weight and

high blood pressure. You can see the disappointment in their

eyes when it comes back low! If my blood pressure is below

around 115/80 I can be hideously symptomatic, every time I stand

up I feel faint. This week I have been drinking expresso's as it's

the only thing that gives my blood pressure a boost, even if it is

only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how

I was. That was really kind of her but I feel guilty for making

her worry. It wasn’t a quick call either, she had a huge list of

questions to ask to ensure I wasn’t brushing her off and telling

her what I thought she wanted to hear. This is why I love the

small practice I use as they have the time to care about their

patients, it doesn’t feel like a conveyor belt. If you need longer

than your allotted time then you get it and none of the other

patients mind as they also know they won’t be rushed out the door.

My plan is when feeling slightly better that I will make

a doctors appointment and ask to have this pain

investigated. Personally I wouldn’t be surprised if my

ovary is stuck to my appendix due to all the adhesions

I have.  

I've been so rough over the last week or so I haven't done very

much in the way of sewing. I tried some hand sewing yesterday

but couldn’t concentrate so gave up. Today I finished a Travis

bag for one of my Instagram friends. Thankfully that was a quick

bit of sewing as I had started it well over a week ago. I can’t put a

photo up as she hasn’t received it yet. Jamie will be sending it

tomorrow for me. The lovely lady and I have chatted a few

times on IG and she asked me if she could send me one of her

bags and give her an honest critique of her work, which is a bloody

brave thing to do. The bag would be mine to keep. I couldn’t let her

just send me a bag, as I knew she had a dog I thought I would

send her a Travis bag.

This is the bag she sent me

I   Love this bag!

Down the rabbit hole

What I have been holding my breath waiting for since the start

of the year and all the bereavements we went through

has finally happened. I knew at some point my health

would be impacted and over the last 7 days it’s happened.

I’ve spent a few days in bed this week, purely because

the chest pain on moving and the level of exhaustion

was becoming unbearable. I really hate it when

my health takes a nosedive as it can be months before

I get back to where I was before. The same thing

happened last year when we went through two

bereavements in the space of 6 months. It took me from the

May until the October to get anywhere near where I had

been before.

I hate the feeling of helplessness and vulnerability this creates

within me. I lose all motivation to do anything and just want to

hide away from the world in the hope it will leave me alone.

But it wont and I have to be a grown up and deal with the things

that make me feel uncomfortable.

I am fed up with the professionals in my life telling me that my

body’s  and minds response to this is normal, personally I’d prefer

that they waved a magic wand and made it all go away. However

I know it’s not going to happen so I just need to put my big girls

pants on and get through this.

I am trying desperately hard not to fall down the rabbit hole and

get seriously depressed. I won’t lie I am dealing with depression

and anxiety at the moment. I have lost my sewjo, I have just been

too exhausted and when I have tried to sew I've ended up with

horrendous double vision. Sewing to me since October has

been like breathing so to not be able to currently

do it is frustrating. Hopefully it ( my sewjo ) will return

soon and I will physically be able to do it.

Lifes a bit shit at the moment

Life’s a bit shit at the moment, I find quite often it goes like that.

You can be on top of the world one day and thanking your lucky

stars about how sweet things are and then the universe finds

out and pulls the rug out from underneath you.

I am normally quite honest with my readers but this is stuff I can’t

and won't discuss for the time being. Rest assured hubby and

I are fine as are our babies ( Mollie and Frankie). Its stuff outside

us our little bubble that is impacting us. Its having a massive

impact on my mental health as in my anxiety has spiralled out of

control again, I feel constantly that I am on the verge of a

panic attack if I am not 100% distracted.

I hate holding stuff back as I like to think above all else I am

honest with you but it’s not my story or my life. The people

in my bigger circle deserve their privacy and I will always

respect that.

On top of this the heat has suddenly got to me. I can’t move

without palpitations, I am feeling faint and generally exhausted.

I would be very happy for a few cooler days just to give my body

a rest and get things on a more even keel.

Due to everything that is going on at the moment not a lot of

sewing has taken place. I have lost a bit of my sewjo, I have

managed to get three bags started for friends and hopefully

they will be completed this week. I just need the space and

time to be able to do this, thankfully they are all very

understanding and know that I can’t work to tight deadlines

as I never know when my health will let me down. The mind is

willing the body says nah!

I have decided to name my little dog walking pouches

The Travis Bag,  after our first Weimaraner, who brought

such love and joy to our lives. He loved his walks so I think

it’s apt that these bags are named after him.

CBD Life product review

As you know I rarely do product reviews due to the fact I think

many bloggers don’t inform their readers that they are being

paid to promote products. I receive no free products or money

when I do a review. The products ( and there have been only

a handful in the 10 years I have been blogging) I have reviewed

have always been purchased by me and today the product I

will be talking about was bought by me and I have no links to

the company, nor have I received any money / financial incentive

for this product review.

I follow quite a few chronically ill bloggers on various social

media platforms. I pay close attention to those that have EDS

because quite often they will tell you something about a

product be it a brace, crutches or pain relief that you didn’t

know. I was very interested when one of them said that she

had been using the CBDLife products - their website can be

found here  with good results. https://Cbdlifeuk.com/cbd-products/

I have tried cannabis oil before ( the legal stuff before

anyone gets animated) but it did nothing for me other than

taste absolutely foul. I had the stuff you had to drop under

your tongue from a well-known national health food store

It was disgusting stuff green and slimy. I think I managed

to take it for a few days before I gave up. I was having to eat

a teaspoon of sugar to get the grease and taste out of my

mouth. From that bad experience I wrote off cannabis oil as

a mad fad and nothing more. Until a friend of mine started

talking about her experience of using products from CBDLife.

After being in excruciating pain for a few days and

ever -increasing amounts of morphine not touching it I decided

to take the plunge. If it didn’t work it was an expensive mistake

but at this point anything was worth a go. I decided to choose

the vaping method, which meant I would have to taste the stuff.

Plus the blurb on the website says that the vape gets it into your

system much quicker than any other route. I was a little worried

about the vape as those of you who have followed my blog

for a while will know I gave up smoking on 6th August 2017.

I used a vape initially to help me quit for the first three weeks

and then stopped using that. I haven’t smoked since. I was

worried that the vape may trigger the desire to smoke but

thankfully it hasn’t.

My vape arrived the day after I ordered it which is fab

customer service. The only downside with the site, I feel is

that you can only pay by credit card, bank transfer or bitcoin.

I ended up paying by credit card as I felt I had a bit more

protection. My vape arrived in this snazzy little case

Inside the case you have the cartridge containing cannabis

oil, a USB connector to charge the vape and the vape part.

It all goes together very easily, it just simply screws together.

Now as I said earlier I had a shit experience with cannabis

oil in the past and it did nothing for me. This vape contains

a much stronger cannabis oil, as you can see from the sites

blurb

https://cbdlifeuk.com/cbd-products/cbdlife-purepen-200mg/

I started using it as soon as it arrived. Initially the vape made

me cough my guts up! I had the same issue when I stopped

smoking and started using a vape. However with a couple of

goes I got the hang of it. Now just to make this clear this

cannabis oil is the completely legal stuff in the UK. I don’t get

high or giggly or hungry taking it. Saturday night was the

first time I noticed a difference, I slept the whole night through.

That hasn’t happened in years, at least 10 years. No waking

up in a blind panic, no waking up in pain. That really threw

me and I just assumed it was a fluke.

However a few days later after using the vape 3 to 5 times

a day, I realised that I hadn’t touched my oramorph ( liquid

morphine) at all. I had a brand new bottle of it in my medicine

cabinet and just hadn’t opened it. Now in all the time I have

been taking oramorph that has never happened. Some days

I am taking it every 4 hours to attempt to get my pain under

control. I was in shock.

I was also sleeping all the way through the night and I was

feeling much less anxious than I normally would. As I said

earlier I haven’t slept through the night in years, it just never

happens it doesn’t matter how tired I am, I will wake up

between midnight / 1am and then I am awake until 3am / 4am.

I have been like this for years no matter what medication the

doctors give me to help me sleep.

I have been so impressed by the results of using the vape that

I have dropped my slow release morphine at night from 30mg

to 20mg. Again in all the years I have been taking morphine

the dosage has only ever gone up never down.

During the last two weeks I have barely had to use a hot water

bottle for back pain. I have had one bad day ( day 9) where

I ended up using oramorph twice as my back was playing up

and I also had some bowel adhesion pain.

I saw my gp last week when I was five days in using the vape

and she was amazed at what I was telling her. I said this maybe

the placebo effect but like she said who cares what it is if you

are in so much less pain that you are able to reduce your

morphine dosage. And do you know what she is right.

The type of pain I suffer from is muscle spasms, nerve pain,

joint pain, basically every type of pain. It hasn’t got rid of my

pain completely but then nothing ever has but it has helped

massively with muscle spasms - which had me in agony every

night. Even my feet have stopped going into spasm and that

has never happened.

Overall I am incredibly impressed with this product, so much

so that I bought an extra cartridge for it to ensure that I don't

run out….ever. If you suffer a great deal of pain / chronic

pain it is certainly something to think about.

Quick list of improvements

Sleeping through the night for the first time in years

Not waking up in pain

Only needed to use a hot water bottle twice in last two

weeks for back pain

Reduced my night time dosage of morphine by 10mg

Have used oramorph twice in just under 14 days

Muscle spasms have stopped (feet and back did it daily)

Less anxious

Feel calmer and happier