Thursday, 31 May 2018

Bl**dy Ears!

For the last few weeks I have really been suffering with dizziness,
I haven’t really said a lot about it as I hate being a negative Nellie,
I don’t want my blog to be me always moaning about my health but
sometimes things are a bit shit and that's what its like at the moment.

I had a cold a while back and I knew it had messed up my ears as they
started to feel very blocked. When I went to the dentist a few weeks
ago I could barely hear him when he was talking to me as I was so deaf
that day. I have been taking stugeron (cinnazine) like its been going out
of fashion as the dizziness has been so bad I have been falling over.
I feel like I have water trapped in my ear and some days the dizziness
is so bad I can barely move until the stugeron has kicked in. This morning
I asked Mr Myasthenia kid to pop into the doctors and book me an appointment.
Thinking I would probably get an appointment in the middle of June, so
imagine my surprise when he rang to tell me I could be seen this afternoon
at 15.30. I needed to go anyway as I needed to see if they would
give me some diazepam to calm me down when I see the dentist - which they did.

At the appointment there was also a student doctor present. Apparently they
don’t really get a chance to look in ears until they do an A&E placement
- with little kids shoving stuff in their ears and up their noses or if they elect
to do an ENT placement. So the student doctor had a look straight after the
doctor did. That was quite good because the student doctor had to then explain
to my gp what she had seen, so I got to learn a little about what was going on
in my ear. Apparently my left ear the good ear is entirely normal however my
right ear is very dark, light should bounce back in a healthy war. But as I
have fluid trapped behind my eardrum it makes my ear a dark place. So for now
I have to use my nasal spray religious for the next month. If that doesn't clear
it then I have to go back and get stronger steroid drops…..if they don't work I
am looking at the possibility of grommets again. The problem with fluid trapped
behind the eardrum is that it F**Ks up your balance and hearing - it makes me feel
very ill. It also puts you at high risk of getting an ear infection. Sometimes my ear
is very painful with it, most of the time it isn’t painful at all. I would just like the
constant feeling of water in my ear to do one now as once you acknowledge
the feeling it's very difficult to distract yourself from it.

I have had a couple of days where the dizziness has been unbearable and
one day last week when I ran out of stugeron. Thankfully my dad came to the
rescue and dropped some in to me. When it’s bad I can't do anything until the
meds start working, I have to lie or sit very still. If I can’t take stugeron
( as I have run out) then it will just get worse and worse until I can’t stand up
without being sick or falling over. I find this incredibly debilitating. I know
I have quite a catalogue of things wrong with me but there are just a few I
really struggle to cope with, CSF leak(s), full-blown migraines and this.
Everything else is a walk in the park compared to these three, Anything that
prevents me from being (almost) normal, I really struggle to cope with.

Thankfully the dizziness does reduce significantly when I use stugeron, it would
be much worse if I got no relief. I have been able to do stuff over the last
week on the sewing machine. I finished my kimono and I am 90% happy with

I also started working on a
WIP (work in progress) that has been hanging around for a while, I hate having
unfinished projects hanging around the place. So last week I decided to
finish the patchwork part of a quilted wall hanging.

The wall hanging involved quite a few 2 1/2 inch half square triangles. 32 to be exact, it's the most I have ever had to make. They then had to be trimmed down to ensure they were the correct size, something I always struggle with.

This was it almost completed just the borders to go on. One of the most difficult things I have made and I became acquainted with my seam ripper!

This is it with the borders on. I now need to quilt it, currently it is draped over the top of my sewing machine with wadding / batting and the backing pinned and glue basted on, waiting for me to decide how I will quilt it and what pattern I will choose. Its 24 inches square so not a small wall hanging. At least I know where it is going once it has been completed. If you had asked me Friday or Saturday I would have told you it was going in the bin!I also managed to knock up this box cushion dogs bed for Frankie to sleep on in Jays room.

I also managed to knock up this box cushion dogs bed for Frankie to sleep on in Jays room.

I bought the sheep material a while ago I love it. The bed has been filled with foam from an old bench cushion that has been in my loft for a few years and some old throws. It is much bigger and softer than his previous shop bought bed and he can really stretch out on it.

Due to the fact I have been feeling quite grotty with my ears I have also had days where I have been taking it easy and using the time to do some slow sewing. I have been making an English Paper Piecing quilt for Jays room. This is my progress so far

I managed to get so much done that I ran out of the little kite shapes that sit between each octagon.  So I had to make some more of those as well.

I took my slow sewing down to the doctors with me today, just as well as I was waiting 45 minutes for my appointment!

Let me just say it  - Bloody ears!

Thursday, 24 May 2018


I am in the throes of yet another migraine, I knew it was coming as my Todd Syndrome / Alice in Wonderland syndrome stuff has been going nuts. Walls moving, feeling like I am falling when stood up and feeling like I am sinking into the floor. The symptoms ramp up and become more and more bizarre the closer I get to the migraine. Yesterday they were particularly bad. So it was no surprise to me when I woke up in the midst of another attack. Why they are more frequent at the moment I don't know but they are very sinus based which maybe because the cold I was suffering with has now turned to hayfever. It really has been a box of delights the last few months my health.
If you would like to read more about Todds Syndrome / Alice in Wonderland Syndrome please click here.

So I will just share with you some photos of my latest makes, another piggy and three tops. I am part way through making myself a kimono, it needs hemmed and the sleeves taken up but I am happy with it. As its only part completed there is no photo.

I was really proud of this one as it's a much better looking pig and finish than the first two. I was immensely proud when the lady who designed the pigs for Simply Sewing Magazine and Sewing Quarter commented on my post on Instagram.

I also made myself three tops over the last week, following the same pattern that I devised myself. I am really pleased as I made a major mistake when I ordered all this material. I believed I was ordering by the metre when in fact it was by the half metre. I thought I had ordered 2 metres of each fabric only to find out on arrival it was just a metre of each. By moving the fabric around and being creative I managed to get a top out of each metre, I am not small so this was a big achievement.

I managed to take this photo of Frankie yesterday so thought I would throw it in for good luck.

Thursday, 17 May 2018

Fabric shopping

Well I am still suffering from this cold, I am into the second week of it now and
I am thoroughly sick and tired of being bunged up, sneezing and then rivers
of snot! Oh yes I am such a lady!

Yesterday I had a dentist appointment, those of you who have followed the
blog for sometime know that I have a fear of the dentist. However I would now
say that this fear has become a deep seated phobia. I can’t watch people having
dental treatment on the tv, the sound of the drill makes me sweat and I want to
vomit. The minute the dentist has his hands in my mouth I want to be sick.
It’s hardly surprising, I have had numerous horrific experiences at the dentist all
the way through my childhood up to the age of 37 when I was finally diagnosed.
I still have problems with dentists who don't believe that local anesthetic
doesn’t work properly on me and I have zero pain threshold for my mouth.
Anywhere else on my body I have a high pain threshold but combine abject
terror and a phobia and the minute a dentists tool touches a tooth the pain starts.

Unfortunately I found out I need a lot of work done on my back tooth on
the right upper jaw. Due to EDS my tooth has crumbled, (plus I have a habit
of clenching my teeth). The central portion of my tooth needs removed
and then completely filled. If I had not suffered twice the agony of a dry
socket I would have just asked for the bloody thing to be filled but remembering
the pain from that means I am prepared to put up with 20-30 minutes of dentistry.
But I am already terrified, tearful and just want it to be over. The earliest
appointment I could get which would be easy to attend was 10th July. By easy
to attend I mean hubby wouldn't have to take additional time off work. Both the
dentist and I are in agreement I need to be given some diazepam to get me
through the appointment so I now need to book an appointment with my gp to
see if they will prescribe me one tablet so that I can get through this.

As a reward for wearing my big girl pants my parents took me to a fabric shop in
Exeter. I have never been to a fabric shop having bought all my fabrics online
previously. Actually we had decided to visit the fabric shop long before they
knew I had the dentist. The thought of seeing lots of lovely fabrics was enough
to get me through the dentist appointment. I had decided a few days ago that
I wanted to make a quilt for the lounge wall ( I will probably make a few so we
can change them over at different times of the year) it is featured in this months
Simply Sewing Magazine issue 43 ( page 67) designed by Janet Goddard.

As usual I wanted to make my own version of this pattern, the colours are lovely
that have been used but they won't go with anything in our lounge. So my trip to
the fabric shop was vital so I could decide on my colour theme, which would be
green ( it was a question of shade) and I wanted the triangles to be green
but with wild flashes of colour. These are some of the fabrics I chose

In the bolt at the extreme left of the photo (tiny green triangle) is my plain solid
colour that my triangles will be set into. The next 4 fabrics are Kaffe Fasset I got
rid of the 6th bolt across which is the deep green with the leaves pattern and kept
the one at the end of the table which is a FreeSpirit fabric. I sent a facebook
message to Mr Myasthenia Kid to ensure he was happy with my choices as he
is going to be living with it to. Here was his response!

So you can see he was pleased with my choice.

When I have recovered from my trip out of the house I shall make a start on it.
However I do need to make some clothes as I have bought lots of fabric and
made no clothes as I have been making some birthday presents which is why
I can’t post any photos of my latest makes as it would ruin the surprise. As
soon as the gifts have been given next month ( I know I like to be prepared
and make stuff early!) I will post the photos!

I forgot I did make some soft toys, two little piggies for Jamie as he saw
them in the magazine and on sewing quarter channel 687 (changed on 1st May)
and 78 on freeview and asked me to make them for him. It's the first thing he's
asked me to make something for him.

Thursday, 10 May 2018

Post Bank Holiday

Those of you who don't follow me on social media, will be unaware that on Friday last week I was struck down by a horrible head cold / virus. My throat felt like I had swallowed a packet of razor blades, I was aching all over, full of snot and at times hallucinating due to my high temperature. It completely floored me and has left me with vertigo as my eustachian tubes ( in my ears) have swollen shut. So all in all it was a fun time.
As I am still pretty shattered and getting over this, I thought I would just give you a quick round up of my sewing projects that I have completed over the last few weeks.

I made a table runner for our coffee table using scraps from the two quilts (quilt as you go) I made for the lounge. The patchwork pieces had been hanging around for weeks. This was the first piece of quilting I had done without a kit. I also got to use my new stitch in the ditch foot, which was harder than I had imagined it would be. It takes a lot of concentration to keep the foot in the ditch !

On the sashing on the table runner I used this heritage stitch. I love it as it adds another piece of interest to the runner.

I also made myself a smaller and wearable Julia top. I dropped the size down by two and lengthened the pattern by 10cm. This is a much more wearable top now. I will hack the pattern again and make the neckline narrower and higher as I will always need to wear something under the top or everything will be on show when I bend forward. It is super comfortable though and I am thrilled with it.

Buoyed by my success, I took apart a much loved but on its last legs t-shirt and made a pattern from it. The sleeves need to be looked at, I had to bodge these a bit. However its very wearable and I used the overlocker for the majority of the construction.

My last make of the last few weeks is this quilted patchwork tote bag. I have a subscription box and this month it came with 42 charm squares, some white lining material and some cotton webbing. I used 32 charm squares to make this lovely bag which I am thrilled with. It took me a couple of hours to make ( purely as I am still a bit sickly!). Here it is front and back -

I have lots of material coming for me to make some more Julia Tops and some t-shirts. In the meantime though Mr Myasthenia Kid has requested a soft toy pig be made. Don't ask me why LOL!

Thursday, 3 May 2018

PoTs & the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in,
a post popped up that deeply concerned me. Now obviously I only have this
members say so that this is the case, it may not be true or aspects of it may not
be true. However he alleged that a well-known UK doctor that many people pay
privately to see after getting nowhere with the NHS when they have PoTs, was
singing the praises of a clinical study that was using The lightning Process to
essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a
fear that a friend and I have shared for the last 4 years that research into the
treatment of PoTS in the Uk was moving towards a more psychological
rather than physiological model.

I am not naive enough to say that the mind does not play a role in health of
course it does. People with depression can manifest very physical symptoms.
I have found whilst dealing with anxiety and depression lately that my pain levels
are affected. On the days where I am really struggling my pain levels are higher,
when I am having a better day my pain levels are back to normal. Clearly mental
health and physical health are linked as they are all part of the whole system.
However to suggest a process that has many vocal detractors, that has had no
properly conducted medical trials that have been peer-reviewed or replicated
can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer
that thinking positive thoughts will cure them.

Now when you try to research The Lightning Process online it is very hard to
actually get any substantial information regarding what the process actually is.
I had to search for quite a while last night. Part of the problem is that those that
attend the courses ( that retail from between £500 -£750 for a 12 hour course
over three days) have to sign (allegedly) a non disclosure document. They are
also constantly told during the three-day course that sharing details of the course
with others will prevent them from becoming well. The lightning process up until
now has mainly been marketed at those with M.E, CFS, Depression, Anxiety,
OCD, and Multiple Sclerosis. The main website has fallen foul of the UK
Advertising Standards Authority and was forced to remove content that claimed
it had cured people of various medical conditions and that it had a success rate
of around 90%. From what I have managed to glean from online sources
( which I have provided the links for at the end of this post) it’s mainly based
on positive affirmations, cognitive behavioural therapy and emptying your wallet
of several hundreds of pounds. It uses a lot of impressive sounding terminology
such as neuro-linguistic programming (A discredited psychological therapy )  neuroplasticity
( changing pathways in the brain) and reducing Allostatic load (stress).
It sounds very impressive and when you are desperate, the sum
of £500 - £750 doesn’t seem that much if you are going to become well again
within three days. I say three days as many of the LP (lightning process)
practitioners claim that participants are well within three days.

From what I have been able to glean from some very limited research is that
it’s all based on breaking the cycle of negative thinking. So at its very basic level
its patient blaming, you are sick because you are trapped in a cycle of negative
thinking. The negative thinking pattern is causing your physical symptoms -
including MS, ME and now PoTs by the look of it, due to the fact you are
increasing stress on your body by continually activating your fight or flight

So for instance if you have the thought “ I feel terrible” you make the hand
signal to stop - catch yourself in the thought, you then rephrase it as in “I am
doing terrible” therefore making it your choice to be feeling that way ( see the
subtle language change that shifts the blame back onto the patient so even if
they claim that they don’t blame the patient the subtle change if language makes
the patient believe they are responsible for their physical state - what angers me
is there would be a national outcry if they tried this shit on with cancer patients).
You then tell yourself you have a choice to make you can choose to descend
into the pit ( where you allow your physical symptoms to take over your life
and continue with the negative thoughts and never get better) or you can
choose the life you love. Now what muppet wouldn’t chose the life you love?
Who wouldn’t want that in a heartbeat? However if you fail to respond to the
process you have effectively chosen to remain in the pit (of despair).
You also tell yourself positive affirmations such as “I am strong like a tree” or
“ I am a strong genius for choosing the life I love” as you visualise the choice
you have made. Sorry only one word for this Psychobabble. Can you understand
now why I am concerned that doctors who treat PoTs and Dysautonomia in the
UK are singing its praises?

A lot of research with PoTs has been around a faulty fight or flight response
so I can see why the leap has been made to the lightning process. As many
patients with ME ( I hate the term CFS ) have dysautonomia as part of their
symptoms, or possibly because many patients who were written off as having
M.E but actually have PoTs and EDS (and dubious claims have been made
about LP curing M.E), maybe these doctors decided that despite tilt table
tests proving PoTs, that somewhere deep within our subconscious we are
responsible for causing our own illness through a cycle of negative thinking.
If you aren’t offended at any level that it is being suggested that your negative
thought patterns are making you sick…….then there really is no hope for you.

The LP is so condemning of negative thoughts that to doubt or to criticise the
process is seen as a reason why you haven’t been cured. From what I have
read those taking part in the process are told to leave their analytical thinking
at the door. There is even a suggestion of a screening process before you are
allowed to attend the course. The practitioners claim that you have to be ready
to attend so this is why they conduct a home study ( a basic telephone interview).
Many of those who have spent the money to attend the course have
said that the interview is a test to see how compliant you will be. Those
who have attended the course and failed to respond to the process are quite
often told by others who claim to have been cured, that they didn’t try hard
enough, they didn’t implement it properly, they weren’t open minded enough
( whilst typing this I keep wanting to add “ to allow Jesus into your life”
because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

Furthermore I have to say on reading some of the testimonials from those who
say their illnesses have been cured by LP, sound very much like those people
who have been brainwashed in some religious cult. They all say the same thing
and usually end with the same accusatory tone that if the process didn’t work for
you then you a) didn’t try hard enough b) don’t want to get well. Back to the old
blaming the patient game for those of us who chose not to get better.

The major problem with the studies that have been conducted is that they
have been so informal as to have patients with no official diagnosis provide
a self diagnosis ( on it's on page at the bottom it shows that the patient results
are from people who have self diagnosed - so may not actually have the illness
they are claiming to have ) also due to its
technique of only accepting positive affirmations and to condemn anything that
could be perceived as negative of course when you question people about how
they are doing after spending so much money on what could be bought in the
self-help section of a bookshop, they are going to tell you that they have improved.
They have been told that to say that they are sick, worse not doing well is not
following the process…… can they say anything other than they have
improved or are living the life they love?

I am always concerned when I find Doctors are conducting clinical trials on
psychological approaches to treat physiological conditions. To me it’s lazy
medicine, it's a chance to shift the focus away from the doctors lack of
knowledge / scientific breakthroughs and pushes the fault for the illness
or disease back onto the patient. Any doctor that suggests this form of
treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in,
that a certain UK Doctor who is famous in PoTs circles is singing the praises
of a clinical study into using the lightning process to treat / cure PoTS. How
true this actually is, I don’t know. So there is no need for panic stations
however I would love to hear from anyone in the UK who this treatment
has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations
 will be when my blood pressure drops to 70/40? or when I dislocate a joint
 if it will pop back in if I tell myself I am strong like a tree?

Resources / Links - official website