H.S.

So last week I wrote about how poorly I have felt over the last week to two weeks and I have finally got to the bottom ( no pun intended ) of what has been causing this dip in my health - well I think.

I have several chronic conditions some rare some rarely diagnosed and one of them is a skin condition called Hidradenitis suppurativa . I don't talk about it a lot mainly because of the embarrassment caused and the judgement you can get from ignorant people. When you say you regularly get abscesses people either assume you are a junkie or your personal hygiene is lacking. I can assure you none of these are true. If you read the link above you will see it is caused or connected to the sweat glands. The weird thing that separates HS abscesses from "normal" abscesses is the fact that when swabs are taken from a HS abscess nothing grows in the petri dish. That is what separates it from standard abscesses which are normally caused by a staph infection. 

The problem is that with HS it is very common for you to get a secondary infection like cellulitis. And just because HS doesn't have any nasty bugs contained within it doesn't mean the bloody things hurt any less. From Sunday into Monday this week  I developed a large  abscess which immediately also turned into cellulitis. It was reasonably sore, I have had lots of abscesses in my time and the majority of them have been a lot more painful than this one. HS doesn't just give you abscesses it makes you feel very poorly when you are in the middle of a flare up. I can run a temperature which is unusual for me, get whole body aches like I am coming down with the flu. I feel very run down and tired. With an abscess brewing this has obviously had a knock on effect with the rest of my conditions and explains completely why the last two weeks have been so difficult. Just by way of explanation its not uncommon for me to have abscesses that I have no knowledge of being there until they rupture. It really just depends where they form and how close they are to nerves and lymph nodes. Sometimes the smallest ones can be the most painful, it really is just the luck of the draw.

I have been quite lucky with my HS it has never really gone further than stage 2, I have never had to be hospitalised with it, I've only ever had one lanced at A&E many, many years ago. I have friends who have endured skin grafts in an attempt to stop the disease progression and multiple hospital admissions and operations to drain them.  Last year was the closest I got to be admitted to hospital when one the size of a hens egg developed over a few days. I was waiting for my doctors surgery to ring me back as I was going to beg them to lance it, when it ruptured as I sat down on the toilet. The location was my bikini line inner thigh. I sat there for a full 30 minutes whilst this just drained and drained. The relief was instant as this one had prevented me from wearing clothes on my bottom half and from walking. It then continued to drain for the next 7 days and required dressing changes at least 4 times a day. I have never seen anything like it. I really hope I never see anything like it again.

Now all of that may seem pretty disgusting and I would have to agree with you. You have no idea how much courage it has taken to even talk about this horrid condition. For me though it gets worse as I really don't tolerate the antibiotics used for this condition. I can't take doxycycline as I can't keep it down I will projectile vomit within 30 minutes of taking it. I don't do particularly well on any of the tetracycline's . I end up having to take Flucloxacillan  which a) give me rampant diarrhoea so I end up eating Loperimide (imodium) like sweets to stop it. I think its because they contain a hefty wack of lactose which I don't tolerate and b)  I can end up having an allergic reaction to it - facial rash. So it's not even plain sailing when I do get the antibiotics. So on top of feeling crap from the abscess I have the side effects from the course of antibiotics to contend with. Oh and I forgot to mention the non stop nausea I can get with these as well and the burnt oesophagus where they get stuck in my throat due to swallowing issues caused by EDS.

I have had over 24 hours on the antibiotics now and the cellulitis has subsided. The abscess is still there, blind so will need some attention to draw it out. I have problems at the moment though as my skin has become very fragile and any adhesive dressings are removing a layer of skin with them. Making it too painful to apply my usual cure a dab of Vicks vapour rub and a mepore dressing. I am having to rely on heat alone.

The whole point of the post is to raise awareness of this condition. Since I was diagnosed in 2011 I have helped around a further 5 people get diagnosed and those people in turn have helped others get diagnosed. I was lucky that I switched surgeries and my new gp was on the ball. For the 12 years prior to that I had been fobbed off with antibiotics and no real help. I was made to feel ashamed and that it was something I was doing or not doing that was causing these flare ups. 

HS can occur pretty much anywhere on the body that has sweat glands. So if you are having continual flare ups of abscesses under your breasts, in your groin or armpits or on your bottom, anywhere don't suffer in silence. Arm yourself with some information and ask your gp if they have heard of Hidradenitis Suppurativa. Being diagnosed won't cure you, there is no cure but it may get you better treatment. When I have a flare up I just have to ring my doctors surgery and ask for antibiotics. I could push to see a dermatologist but I will admit I am too embarrassed and as I can manage most of the time myself, I just get on with it.

Sewing Secrets

I am officially one of the worlds worst secret keepers!

How I have managed to keep the following items a

secret over the last few weeks is beyond me. When

I make something for someone I always want

to give it to them immediately  or I accidentally let

slip what it is. This time however I have been strong

even though it has been incredibly hard.

A few times recently in blog posts I have said that I

have been unable to share what I have been making

that week due to it being a present. Thankfully I can

now share with you my makes - which I am incredibly

proud of as these two birthday girls have received their

gifts.

Imogen will be 21 on 23rd June and is incredibly special

to both me and Mr Myasthenia Kid. I discussed with him

months ago what I would like to make for Imogen's birthday

and he was in full agreement. It took me a little while to source

the material as I wanted all kinds of Unicorn fabric but I also

wanted it in Pink and Grey so it wasn’t over the top girly.  

The first item I made was a 20 inch square cushion

cover in a Dresden Plate design

I had a bit of a nightmare with the cushion pad as although

it was sold as a 20 inch cushion pad, it was actually a lot

bigger. I, being a novice and idiot didn’t think to measure

the cushion pad before I started making the cushion. I just

presumed that if something was being sold as a 20 inch

square cushion pad that is exactly what it would be.  So when

I placed the cushion pad inside the cover it looked terrible

- in fact stuffed sausage would be an accurate description.

I was almost in tears as I had worked so hard. So I decided

to measure my completed cushion cover and make my own

cushion pad to fit it. I used my overlocker to do the edges

of the cushion pad and the ladder stitched it closed once I

had placed the stuffing inside. I took apart the bought

cushion pad and ended up with two nice squares of white fabric

and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag.

I had already made one as a project in my subscription box

was this exact thing and they had sent out 42 charm squares,

lining and webbing for it to be completed. I had really enjoyed

putting it together and couldn’t get over how much I was using

the bag as it was so roomy yet so light weight. So I made my

own charm squares and bought the webbing online and

knocked up one for Imogen.

I scotch guarded both the cushion and the bag to

help resist stains. Imogen can be a little clumsy the same

way I can. I also gave washing and ironing instructions with

each.

Last week on the spur of the moment I decided to add

something extra to Imogen’s gift. I had been doing some

redwork for my other friends gift but want to change it up a

bit so I found a  unicorn design online, unfortunately there

is no attribution for this work so I can’t give credit to the artist.

I did change it up just slightly by putting a heart around it and

not using the words that had been printed under the design.

Here is the finished item

I have filled the inside of the cushion with a mixture of stuffing

and dried lavender. It smells divine and the whole house smelt

of it for a few hours as I filled several lavender pillows that day.

I again provided washing instructions / care instructions just

in case. Imogen was given her gifts on Saturday. The message

she sent me after opening them was so lovely it made me

cry, then Imogen's mum Helen sent me a message in the

evening which was really lovely too and that made me

cry as well. It’s really nice when you have spent hours

working on an item and the person is overwhelmed by

it and is truly grateful for them.

My oldest Exmouth friend Ellie also has a birthday

in June ( not until the 30th but with works schedules

etc it was difficult to know when I would see her next) .

I gave her the gifts I had made this morning.

This is a redwork lavender pillow. The redwork design was

free from a site called https://www.birdbraindesigns.net/

which has some really lovely designs on there. I

added my own embellishments to the design and also

added Ellie's initial to make it even more personal.

This has again been filled with stuffing and lavender.

It’s a lovely small size that could be placed under a

pillow or in a drawer to leave the scent of lavender

behind. I have really enjoyed doing the redwork and

have made several more as gifts for people. They take

me several hours to do but I really enjoy sewing them.

The stitches on these and the unicorn cushion are

very basic just a running stitch, back stitch and french

knot are all that are needed to create something

that can look quite stunning.

The second part of Ellie’s gift had been in the planning

stages for ages. I was scared to start it as it was something

different than I had ever made before. Plus I kept adding

to the level of difficulty. It was the first time I had used the

product Odecoat which ( depending on how much

you use) can make something totally waterproof. I did

enough to make the item water resistant / stain resistant

inside and out.  This was also the first time I had used

my machines embroidery functions, I also used the

memory function. I used an iron on stabiliser as

well and proper embroidery thread. So it was a project of

firsts. The pattern comes from Lucy Brennans

blog / website https://www.charmaboutyou.com/ and

the pattern is the #pieceofmepouch. It’s so stunning

and once I had my head around it not difficult to make.

I also have to say a massive thank you to Lucy who

helped me out when I was being a bit dim and not

understanding the pattern. Lucy is always so encouraging

and supportive, I can’t thank her enough.

This week I also had to make my dads father’s day gift.

This had been rattling around in my brain for weeks. I knew

I wanted to make him something that was special and a one

off but what. I decided after gaining confidence making the

piece of me pouch that I could use aspects of that and make

my dad a bag to carry his (clean and empty) dog poo bags.

I decided that I wanted curved edges on the top, that I

wanted it to be 3D rather than 2D. I wanted a loop on the

back so he could attach it to a belt and I also wanted a

clip on it so that should he not be wearing a belt he could

attach it to his belt loops. It also had to be small

enough that it would impede his walking.

In my mind's eye I could see exactly what I wanted

so last Wednesday morning I sat with an empty bonio

box (dog biscuit) in front of me and made my template.

I used Odecoat again to help make the fabric water resistant

and to make it a bit stiffer. Also when I quilted it, I made the

lines much closer together as I knew this would make it much

more rigid. I am delighted with the way it's turned out.

Unfortunately due to a series of events out of both of

our control I have been unable to give it to him as yet.

I am pretty sure he doesn’t read my blog - mum does

so I will be safe posting it here.

My last make of the week was this Owl stuffed toy

for Jamie, it was his father's day present from the dogs.

I absolutely adore this and it looks so cool on his bed!

So far the dogs have left it alone.

* * *

Health wise I have been up and down. The heat had

been causing a lot more ptosis than normal. I can really

feel the mestinon wearing off after a few hours so I

have had to been really strict with my dosing schedule.

As once I get full blown ptosis it can be difficult to shift.

I managed to have a large abscess develop under my

breast due to the chronic skin condition Hidradenitis

Suppurativa. Tuesday afternoon this decided to erupt

and immediately go into cellulitis. My breast was so

painful I couldn’t wear a bra. Thankfully the antibiotics

had it gone right down within 3 days.

A few days over this last week I have been woken

up in the night in a lot of pain with a headache

( not a migraine) . I managed to work out on Sunday

that it had been due to the position I had been holding

my neck in whilst sewing. This was causing me pain

through my collar bone and deep into the soft tissue of

my neck. This was then causing me to have awful

headaches. I actually got very paranoid that my CSF

leak was back, until Mr Myasthenia Kid pointed out that Leak

headaches don’t start when you are lying down, they start

on sitting up. This headache was with me whatever position

I was in. It was not a leak headache more poor posture

due to the heat making my muscles weaker than normal.

This morning I woke up with a bad pain under my sternum

and a burning feeling in the back of my throat.

I immediately worked out that when I had taken my

4am antibiotic (despite drinking loads) it had become

stuck in my gullet. The tablet had dissolved in the back

of my throat and burnt the tissue. I have been drinking

gaviscon straight from the bottle and drinking only water

to settle it down. It is feeling better than it was but there

is still a burning pain. I have had issues with taking

capsules for years due to problems with my swallowing.

This just highlights again how much weaker this has

become during the heat.

So although it may seem like I must be doing ok because

I have sewn loads don’t let appearances fool you. Everyday

I am on the maximum amount of painkillers I can take as

my back is so awful at the moment I have been having pins

and needles in both legs. I’m either too hot and feeling faint

or feeling cold thanks to my wonky Autonomic nervous

system. I am just determined to do my best every day

and be the best that I can be and let the creative juices

flow. It is what makes me happy. It doesn’t take away

all the shitty  health conditions I am living with.

The Dentist

It’s 13.20pm on Tuesday 17th October and I am here stressing to high heaven because at 14.15pm I will be in the dentist’s chair. Like every single person I know with EDS, I hate the dentist. I am only going today so that I don’t get kicked off the list and end up without a dentist. The last time I was there it was a nightmare, which you can read about here in my post Blind Panic  . I am still really angry that he didn’t listen when I told him local anesthetic wears off on me very quickly. He obviously thought he knew better. I ended up chickening out of the hygienists appointment because I was having panic attacks a week before it was due. So today could be very interesting.

A few months ago one of my back teeth disintegrated when I was eating some chocolate. I wouldn’t have minded but I was nibbling at it with my front teeth when the back molar (upper right 7 I found out this afternoon) decided to just fall apart. I know the dentist will want to fuck about with this tooth, be it a crown etc but he will be told by me that I want it pulled if he wants to play with it. I don’t do root canals or anything other than a straightforward filling with my teeth. The reason behind this is I have a shockingly low pain threshold when it comes to my mouth. Anywhere else on the body I am an absolute trooper but I never get adequate pain relief when they are messing about with my teeth. At 43 I believe I am entitled to call the shots when it comes to my teeth.

I know some of the low pain threshold with my teeth is caused by the abject terror and stress a visit to the dentist causes me. Me and Dentists have never got on, probably because for a lot of my life EDS hadn’t been diagnosed, it didn’t seem to matter to the dentists treating me if there were tears rolling down my face and I was screaming whilst they were carrying out treatment. I was to be ignored because I’d had anesthetic, so I couldn’t possibly be feeling anything. The problem was I felt everything. Now the association is set in my  mind that whatever the dentist does will mean pain to me. My last dentist was brilliant, very patient and understood EDS. She had got me to the point of not being absolutely terrified, which was quite a step forward. Unfortunately she has left the NHS and now practices privately. I am hoping today that I will be able to find out where as I need to build my confidence back up and hopefully get her to have a word with the guy that is my dentist now. I am hopeful that due to me almost ripping the drill out of his hand last time that it was enough of a frightening experience for him as it was for me that he takes me seriously. But it’s been a long time since I went…………..deliberately.

There has been a lot going on here, decorating, a trip planned and me being much more unwell than usual. I had a very bad flare up of Hidradenitis suppurativa which then had an impact on my hemifacial spasms (**sarcasm) no really it affected my MG like symptoms really badly, (I have been exhausted, very weak muscles and ptosis coming on within 2-3 hours of taking mestinon). I have been on mega doses of antibiotics trying to avoid any surgical intervention as this is the worst flare up I have ever had. I am still not out of the woods as the antibiotics are due to finish shortly and the abscesses although have reduced in size are still there. If I could get out of going to the dentist today (not due to fear) I would have as I am utterly exhausted again today.

I am going to have to go and sort myself out ready to leave. The time is rapidly approaching for my appointment. I will let you know how I got on when I get back.

* * *

The good news is I am still alive the bad news is I need a filling on the tooth that disintegrated. It was quite amusing as the dentist didn’t remember me, so I gave him a brief overview of our last appointment. Which he laughed and then checked the notes, saying  “oh my goodness yes, I don’t remember it but it’s all here!” . I explained to him again that I am an absolute wuss when it comes to dental work. I told him that I believed a lot of it was psychological due to years of painful dental treatment when I haven’t been believed when I have told the dentist I can feel whats going on. That I now have a deep anxiety about the dentist and that I had chickened out of going to the hygienist in March because I had started having nightmares two weeks before the appointment.

I still don’t think he 100%  appreciates how very difficult it is for me to attend appointments just due to the fear but he was so gentle today, a completely different bloke than last time. Not that he was rough last time but he had a different attitude. Half way through the appointment he said “You can’t have adrenaline in your injections can you?” to which I nodded as his fingers were in my mouth. He said “ I remember you now, you faint if you have the adrenaline” again a gurgle and a nod for a reply from me. Obviously there aren’t too many of us that actively request no adrenaline.

I have to go back the second week of November for my filling, which is fine by me. It gives me a chance to chill out a bit after this appointment. I am utterly drained of energy now. I was better this time on the lead up to the appointment probably because there is currently so much else going on, I couldn’t sit and focus on it. Of course in three weeks I will have to go through all the stress again knowing I am going to have to have a filling but that’s life.

On the way home Jay said “I just don’t get why you have such a low pain threshold at the dentist and why you get so anxious, you’ve had lumbar punctures and all sorts of horrid procedures done without adequate pain relief” I agreed but as I have said I think it is a lifetime of painful dental treatment that has left me like this. He knows how hard it is for me to go and was telling me how brave he thinks I am for going. If I could get away with not going I would but I can’t having had dental abscesses before I need to be on a NHS dentists list.

Being a grown up really sucks sometimes.