Thursday, 26 July 2018

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

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!

Thursday, 19 July 2018

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.

Thursday, 12 July 2018

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.

Thursday, 5 July 2018

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.

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

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