The storm has passed

The last 4 months have been a particularly trying time for me. Obviously some stuff I have alluded to such as my mum being diagnosed with cancer however there have been other things going on as well, which for reasons of my own privacy I won’t be sharing. I do try to share as much as possible with my readers but sometimes you have to hold a little of yourself back. When I write I always think do I care if my worst enemy has this information? If the answer is no then it gets written about, if yes well it never makes it to the blog.

I do like to have a division between my world and my life in cyber space. Like all people do in real life we have the public face the person we choose to present to the outside world and the private face, the person who only the very closest people to you get to see.

Thankfully what has been going on behind the scenes has now resolved and life can move forward again. Its feels like a massive weight has been lifted. For those 4 months I didn’t feel like me at all but someone who had a huge black cloud hanging over them constantly. I really didn’t feel like I was living and enjoying life merely  surviving. The anxiety the situation induced was off the chart. I found that the only place I felt any happiness was sat at my sewing machine, purely because you can’t ruminate ( well I can’t) and sew. My attention has to kept solely on the job in hand. When my mind wandered so did my stitches! Sewing yet again has got me through a very difficult period in my life. It is just such a shame that as I mentioned in last week’s post sewing is at times getting painful, causing me pain in my neck, back and causing pins and needles in my hands, arms and face. I now have to restrict the amount of time I spend sewing. I have found wearing a soft collar prolongs the time I can spend sewing.

Since July I have been sewing like a woman possessed! I decided earlier on in the year after my success in selling Star Christmas Tree toppers in the run up to last Christmas, this year I would experiment with opening up a little “shop” in cyber space. I’m not on Etsy – at the moment I couldn’t handle the stress that would involve! I have set up a little Christmas shop on a social media platform where my customers are by invitation only. As this is an experiment to see what sells and what doesn’t I have limited the numbers. It’s also filled with people who know me, who know that my health is very up and down and who wouldn’t hold it against me if I was slow to respond to a query etc. If I set up an Etsy shop I wouldn’t have customers who knew me and could be put under a great deal of pressure by their demands.

It has really given my self-confidence a boost. To this day I am amazed that people want to but the things that I make. Not that I think my items are crap – my heart and soul goes into them and I am my own harshest critic. I just can’t believe in 13 months how far I have come. I still have days where my self-esteem has a wobble but that’s life and I can deal with that. Living under a black cloud for 4 months is not something I want to repeat in a hurry. I didn’t feel like me at all, I didn’t act like me at all and I can’t have been a bundle of laughs to be around if I am perfectly honest. Its amazing what a difference a week can make and I feel like I am me again.

I’ve been making all sorts of things for my cyber shop since the end of June beginning of July,

 Christmas bunting / garlands

Christmas Tree toppers

Christmas stockings

Soft toys

Travis bags in various designs

 Lavender Ravioli

Norwegian Santa’s / Christmas Gnomes

Christmas tree decorations

Christmas door wreaths

 

I am still making a few more bits and pieces and will do throughout November. Then at some point I need to bind two lap quilts I made for our sofas, make Mr Myasthenia Kids fabric advent calendar. Plus make family and friends Christmas presents.

And as if that wasn’t enough I treated myself to an embroidery machine, which I am calling the beast V2 as my Atelier 5 (janome) is called the beast. I can’t wait to start learning how my new machine works. I bought a Brother Innovis 800e which is a mid range stand alone embroidery machine. It has a lovely big hoop which means I can work on several sizes of design. Jamie has already put in a request that he gets some new handkerchiefs that have been monogrammed by me! It has so many inbuilt designs and you can buy more designs on-line or can get them for free.

 

 

 

 

However buying the embroidery machine also meant upgrading my Chromebook. My old Chromebook couldn’t transfer data onto a USB stick nor download information from it. I tried resurrecting my old laptop – which ran on windows 7 ( so it was basically an antique) but it was painfully slow and I find windows as an operating system, a pile of shite and illogical, especially when you have been using Chromebooks and chrome ever since they were on sale in the UK.  I spent a small fortune on the Chromebook its an Asus Flip, so you can turn the keyboard behind the screen and it works like a tablet. It is amazing how the technology has advanced over the years.

New Chromebooks can transfer data to and from USB sticks, all I needed was a USB hub as the Chromebook comes with a micro USB port. I picked up a reasonably priced one from the place that has the same name as the South American River and within seconds was transferring data between USB sticks like a pro. It is something I have never done before, there was nothing to learn, no drivers to install the screen simply tells you a new device has been located and do you want to open it. I felt like the king or should I say queen of the world teaching myself how to do this in seconds. With me and windows stuff never took seconds it could take months or even years for me to learn the most basic of tasks as it just never felt logical to me. I often felt like I was being expected to juggle and balance a plate on the end of my nose!

So although my new Embroidery machine arrived yesterday ( Monday ) I didn’t have a play on it. By the time it arrived it was close to 3pm and my back had given out completely. I must have been a sorry sight as the delivery guy brought it into the house for me. Thank you DPD! It stayed in the box another hour whilst I waited for the back pain to subside and to stop the feeling that my ribs were being crushed. I then very slowly unpacked it and set it up in my sewing room come kitchen / breakfast room. I am hoping later on today will be when I get to have my first go on it.

And hubby and I had lovely birthdays last week. Happy birthday dad xxx

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Birthday Girl – what a pain in the neck

Well I turn 45 today! Yes 1st November and it’s the exact day of the week that I was born. Which is bizarre! And something stranger it’s Mr Myasthenia Kids birthday tomorrow. So we have two days of celebrations, eating things we shouldn’t and having a few glasses of pop.

This week has been odd as I started getting pins and needles really badly in my wrists, hands, fingers, legs and face. It’s so bad on my left wrist that I just can’t wear a watch because this seems to irritate the nerve. Annoying as I love my watch. Jay bought it for my 41st birthday and I really do love it. 

Initially I scared myself stupid by consulting Dr Google, what came up was a mixture of M.S and anxiety. Yes I am stressed but I was anxious or hyperventilating. So that left M.S but having calmed down a little I actually think the problem is stemming from my neck. I have lost the curve in my neck – to be honest I don’t think I have ever had one. A chiropractor I consulted due to back problems when I was around 16 took x-rays of my neck and said he had never seen such a straight neck. He said it was swan like. Me being vain took that as a compliment, not realising that a straight neck is a major problem and will provide you with no end of painful problems, which I have suffered with on and off since the age of 16 when I pulled a roll cage onto the shop floor at work that was way too heavy for me. I felt compelled to do it as the checkout manager ( a real nasty piece of work and a bully) stood shouting at me until I moved it. Excuse the language but my neck has been fucked up ever since.

It didn’t help that two years later my car broke down whilst I was driving in the pissing down rain, my dad ever the bloody gentleman made me get out and push it whilst he steered it into a safer location. With the road being wet I slipped and managed to sprain my neck. It was absolutely superb timing literally days before my A-level exams took place ( the exams we need to take in England and Wales to get into University, in Scotland they take Highers). I ended up having to sit through 3 hour exams with a neck brace on high as a kite on painkillers. I was given a desk at the back of the room so that I could get up and move around if I needed to. I never did, it was embarrassing enough that I had to wear a neck brace let alone draw attention to myself by moving around in a silent exam room.

A few years later and I am university and guess what? Yep my neck is causing me an enormous amount of pain. I was diagnosed with “student neck” probably now known as Text neck. Its caused by looking down and in my case reading mountains of set texts, these days it’s caused by looking down at a mobile phone (cell phone) or a computer screen. I paid out a load of money to have my neck manipulated to ease the pain.

And that is how life was for years, the last really bad period with my neck was back in 2000 around a month after our wedding and possibly a few years after that. I know I have had to attend work on quite a few occasions wearing a soft collar.

In 2016 I had an MRI to see if they could “see” my CSF leak. On the radiographers report it stated I had reversed cervical lordosis – what this means is that it now bend in my neck is bending the wrong way This link has a great x-ray image that shows a neck with the bend going the wrong way – here . 

The problem is the neck is probably the worst designed  load bearing  area of the body. The head weighs up to around 10lbs so the vertebrae, muscles and ligaments have to spend every waking hour keeping a bowling ball up against the force of gravity. Also the neck contains the spinal cord and at the very base of the skull your brainstem is encased. So anything that messes with your neck can leave you in serious hot water. A break which impacts the spinal cord at this level could mean you end up totally paralysed and unable to breathe for yourself. You’d think something so vitally important would have been designed just a little better. 

I saw my gp in July and told her that I was getting increasing amounts of pins and needles in my hands and arms. I also told her I was getting an increasing amount of pain in my neck and base of my skull. As my mum had just  been diagnosed with  “probably” cancer, I was informed by the gp that the pain and numbness was stress. This diagnosis was reached without any physical examination. Had they bothered to examine me they would have noted that I have pain from the base of my skull down to between my shoulder blades. This pain limits me doing anything sat down at a table, using my arms . Anything at all where my head maybe held in a tilted down position.

I ended up having to have a break from sewing as the minute I sat at my machine the pain in my shoulder-blade would start. I started using a tens machine on a regular basis. I got the pain under control. As long as I took a break every 15 minutes and checked my posture I could manage the pain.

Then as the pain had gone away I started sewing again, in fact quite a bit more, when I was able to. Now as soon as I sit down at my machine the pain starts. If I hold my mobile phone (cell) the pain starts. On Sunday I was chatting with a friend, nowhere near my sewing machine or mobile phone and I started to get a burning pain in my left wrist and fingers. I knew it was nerve pain and I assumed ( wrongly it was due to being deficient in B12). After she left I dosed myself up on B12 and hoped that the pain would be gone by the following day. It wasn’t. It was now down both arms and in my face. I was so frightened by it that I rang the duty dr at my gp surgery.

I must have blood tests and go in and see them towards the end of November. The doctor thinks it maybe a nutritional deficiency, thyroid or electrolyte imbalance. After having a good think about it for the past 24 hours I am pretty sure its my neck. I get some relief when wearing a neck collar.

So today my birthday will be quite a quiet affair. Spent with hubby and friends. Alcohol will be consumed mainly as a muscle relaxant in the hope I can spend the day without being in constant pain and the nerve pain in my left wrist not driving me mad!

Women Glow…..again

Back in July 2015 I wrote the blog post Women Glow – https://wp.me/p4zBAs-c5 in which I talked about the night sweats I was having. I eventually worked out that the blood sugar was dropping whilst I slept and this was causing me to sweat profusely overnight. It wasn’t uncommon for me to have to get changed 4 times, which lead to very interrupted sleep and a feeling of constantly being dirty and smelly. Neither of which I was.

Fast forward 3 years and now I have the problem of glowing quite profusely in the day time. It started back in 2017, initially I put it down to having gained so much weight in the previous 12 months but now having lost 3 stone (42lbs / 19.051kg) and the sweat is still pouring from me – if not worse I have to admit it’s not the weight causing the issue. I personally believe that this is probably the start of the menopause, I’ll be 45 next week so I’m in the right ball park. I can’t tell you the state of my periods as having been on cerazette for many years they haven’t paid me a visit since Christmas Day 2015. I am loath to come off the pill to find out because a) I will be an emotional mess, b) I could start fainting multiple times a day risking injury and c) periods for me are horrifically painful. The last time I came off the pill back in 2011 I had a period every 20 days. Gee that was fun, so you can see why I am not keen to experiment. Although I know at some point I am going to have to, just to know what is going on.

There is nothing that I can put my finger on that makes these sweats / hot flushes worse. I literally sweat from my knees to the roots of my hair. My face at times will go bright red. The heat I generate is quite exceptional for someone who has spent their life complaining they are cold. I had my reading glasses on top of my head the other day whilst a flush was happening. I moved my glasses to use them and both lenses were steamed up with condensation. I can’t lie the flushes are making me miserable.

They seem to get worse when I am exposed to heat – which is massive pain in the arse especially when my go to pain relief is using a hot water bottle. I am using one at the moment and the sweat is pouring off me. I have lost count the number of times I have had a shower, got dressed dried my hair – the heat has triggered a hot flush and I have ended up having to change all my clothes because I am wringing wet, down to my knickers. I know it’s an attractive picture I paint. Some days after spending ages sorting out my hair I have sweat so much its become a curly mop so I just have to tie it up in  a hair band. I don’t have the energy to wash it and style it again. I really hate it as it leaves me feeling dirty and smelly. Jay assures me I am neither but I feel so unclean and when you don’t have the energy to wash again – and what’s the point the heat will just trigger another round of sweating? It can start to really get you down.

You may think I am being melodramatic but when the sweat is dripping off the hair on the back of your head  making it look like you’ve run a marathon or its dripping from your top lip, you’ll understand. This isn’t a pleasant glow on a warm day this is full on looking like I have taken a shower in my clothes. All my life I have barely sweat and now I am making up for 40 plus years of being bone dry. 

I have raised the subject of the menopause with my consultant and my gp. Both have laughed and tell me I am too young. I think this is due to EDS, unless people check my date of birth they forget that the person sat in front of them is not in their 30’s but is now rapidly approaching her 50’s – lets face it folks from next Thursday I am halfway there. Back in 2015 I had a blood test that showed I was producing luteinizing hormone. Unfortunately due to having a CSF leak it wasn’t investigated further. This showed that my ovaries were not working at all which is premature ovarian failure. At the time it was when all my bloods were strange raised prolactin, low cortisol etc etc. I have no idea if it has been tested since. 

I know the sympathetic nervous system is responsible for sweating but I doubt that this has just suddenly decided to go awry. It is more likely given my age that this is the perimenopause or the menopause. But as the NHS now no longer tests for this how the fXXk will I ever know?

As a precaution I have bought a load of supplements – sage leaf, red clover and black cohosh and if these help at all I will report back here. If they don’t I bought myself a pack of 12 flannels that I will make damp and put in the freezer – these will be my emergency cool down packs as keeping the fridge door open to cool down is a waste of electric and a risk of food poisoning! 

My other go to is to have a fan going whilst I  get my hair dried to try and relieve the sweating and dry it up before my hair gets frizzy. I hope to god the supplements help as I am on the verge of melting into a puddle.

17th October

For the last ten years I have written about how much I hate October and how this month always fills me with sadness. This year is no different. In some ways it is worse.

This morning (17th Oct) I woke up sobbing, as today is the 12th anniversary of our beloved first dog Travis’ passing. He has been dead longer than he was alive, just under three years. The pain today is as raw as it was on the day we said goodbye. Why it is so bad today I don’t know. Perhaps with everything that has gone on in the last 12 months ( losing Willow, Pam, Gran, mum having cancer – now in remission) it’s all the stress just being released. I often wonder how it is possible that I can shed so many tears for a dog that was in our lives so briefly but he wasn’t a dog to us. He was our boy and the pain of saying goodbye is something I will never get over.

Losing Willow on December 15th was hard but she had lived for 11 years. In that time she had been pampered and showered with affection. She had fought many battles herself having cancer, a pyometra both of which could have killed her. I had a sneaking suspicion in the months before her passing that the cancer had returned but it was internal. I know people thought I was crazy when I voiced my concerns, like I was wishing her life away but I know my dogs and I know when things aren’t right. I have cried many tears over Willow but it is a different pain I feel with her passing. I miss her, I remember her fondly. The pain I feel with Travis is like a knife to the heart. The level of pain is not something that has ever gone away. I can talk about Willow without breaking down although some days it makes me feel terribly sad. Talking about Travis about 50% of the time will reduce me to tears no matter how strong I am feeling. It doesn’t mean I loved Willow any less, it just means Travis’ life was cut short and I mourn the time I should have had with him. However had he lived I would never have experienced life with Frankie, his nephew.

Poor Frankie and Mollie ( Trav’s sister) have been desperately trying to lick my face clean of tears all morning. I am trying to pull myself together because I know the sight of me breaking my heart is distressing them. I hate upsetting them. They are my last links to Travis, Mollie is his sister born a year later from the same parents and Frankie, Mollie’s son is his nephew. I never realised how much Frankie looks like Travis until you compare photos side by side. That’s probably why I dote on him so much. After Travis passed away I said I would never have another boy dog in the house and then after Frankie had been with his new owners a week he came back to us as the children were allergic to him. His owners broke their hearts when they returned him. I have never seen a man so broken by a dog ( other than Jay when Trav passed away and my dad when his beloved Esme passed away). I shed a tear with them. At that point I was resolute that Frankie would be sold. Within a few days I knew I could never let him go.

And now Frankie is 12 and not in the best of health, Mollie is 14 and still bouncing around like a puppy but deaf as a post. A few days ago on her walk she was playing with another Weimaraner half her age and giving as good as she gets. Yes I will be devastated when pass away but I know that they lived full lives, surrounded by people who love them. Travis’ life was cut tragically short and I think that’s why I find it so hard to deal with.

I hate October particularly 17th and I probably always will.

World Mental Health Day

World Mental Health day was held on Wednesday 10th October ( today as of writing this). It’s quite ironic that I am in a spiral of anxiety again. I am trying very hard to distract myself but it’s very difficult when you spend your days alone for the majority of the time. 

 
 
When my anxiety gets very bad I tend to fixate on something. It can be really obscure, last time it was Meghan Markle now the Duchess of Sussex – don’t ask me why it was probably as it was coming up to the Royal Wedding. I don’t fixate of anything in particular it was just she was constantly on my mind. I know how very fucking weird that sounds. I don’t have any control what I fixate on. I was worrying about how horrid her family were being to her and hoping that the wedding would go smoothly. See I told you I can fixate on the most bizarre things. All I can do is wait for the anxiety to pass and for me to no longer fixate on the issue.
 
Currently I am fixated on Frankie (dog), he had his 12th Birthday on Sunday and obviously that day was happy and sad because it also would have been Willow’s 12th Birthday. As a double whammy it was my late Grandmothers birthday the day before, she would have been 90 years old. On top of that October is an extremely hard month for me as it’s the month that hold the anniversary of our first dogs passing – October 17th 2006. The date is etched on my memory, it will never leave me, just as December 15th 2017 (Willow), January 6th 2018 ( Gran )  January 24th 2017 (Andrew), January 26th 2018 (Pam). The older I get the more dates I remember. Its something I can’t help. 
 
Frankie is the centre of my fixation at the moment as he is a big dog who is 12 years old. He has a grade 2 heart murmur, arthritis, mobility issues and possibly a tumour growing on his back leg. He can’t have any operations due to the fact he won’t survive the anesthetic due to the heart murmur. I know that some time very soon ( I sincerely hope it isn’t soon but I am a realist) we will have to make a decision that will break my heart all over again but will be in my boys best interest. What makes it hard is I am destroying the time I have with him now by fixating on this. Like I said it’s totally out of my control. Until I get on a more even keel these intrusive thoughts will just continue. I have tried telling them to stop, I have used distraction. I have used everything in my arsenal and now when things are exceptionally bad I am having to use diazepam. 
 
When you have anxiety or any mental health issue there is no banishing those horrid thoughts from your mind as someone so helpfully suggested on social media. There is no just getting over it. You just have to ride out the storm until the anxiety cycle or whatever the issue is, is either alleviated through some sort of treatment or it burns itself out.
 
So please be kind with your words, don’t rush to judgement. You really have no clue what another person is going through. Just be kind, sprinkle that shit everywhere, in every way that you can.
 
Peace Out xxxx

Mum

I look back at the time when I used to write two blog posts a week and for the life of me can’t understand how I did it. I know at the time it would take all week to write those two pieces. I hadn’t discovered sewing then and was desperate for something to fill up the long hours of being alone whilst Mr Myasthenia Kid was at work. These days I can struggle to come up with one post a week as I don’t want to be forever moaning about my health but due to the fact I don’t go out socialising and can spend many days where the only person I see is Jay. It can be incredibly hard to find that spark that inspires the next blog post.

 
At the moment I am struggling to sleep or even when I do sleep that it is good quality sleep. I am constantly feeling like I am semi conscious. In the mornings it is taking a few hours for me to become properly awake. I hate it when I am like this as it just feels I have wasted a few hours before I can do anything at all purely because in my semi conscious state I am so clumsy and not fully alert to attempt to do anything at all risks injury. When I am like this I quite often go off into a world of my own, minutes can pass before I realise I have been sat staring into space thinking of nothing in particular, I have just zoned out. Every part of me feels like it is on a go slow whilst I wait for my morning medications to take effect. It also means my pain levels are higher than normal.
 
 
Some of you who follow me on social media will know that life has been extremely stressful of late. I havent gone into massive details on my blog but now I feel is the time to let you know what’s been going on. Back in July my mum went to her doctor’s surgery as she had been experiencing some pain. During the course of an examination the gp discovered a mass on my mums ovary, not a little one a huge mass. Mum was referred to hospital pretty much straight away under the two-week rule ( for those of you unaware of the two-week rule, is that if cancer is suspected you will have tests and see a specialist within 2 weeks. I have been referred twice in the past under the two-week rule when I have discovered lumps in my breasts. Thankfully both times it has been fine.)
 
Before the operation my mum was in a lot of pain, the mass was increasing in size and was now becoming visible externally. Every time mum was examined she ended up in agony. It was a very worrying time for all of us. 
 
On August 13th Mum had a massive surgery, she had decided that although the surgeon had told her that they weren’t 100% sure if the mass was cancerous there was an area that was causing them concern. They would possibly be able to tell her after the surgery if it was cancerous or they may have to wait until the mass had been examined by the pathology lab, that she would have everything that they could remove, removed to give her the best chance. So rather than it being a hysterectomy, she also had her ovaries removed, appendix removed, lymph nodes removed, cervix removed and all abdominal fat removed. This meant that should it be cancer there was nowhere it could hide and grow in. 
 
There were complications during surgery which meant another surgeon had to be called in to assist as mum had bowel adhesions – despite never having an open surgery in the past or even a laparoscopic surgery. She was one of the unlucky 10% of the population that develop adhesions without surgery. It possibly explains why I have developed such bad adhesions, if mum can have them without surgery and I have had around 5 abdominal surgeries.  For those of you who don’t know you can get adhesions anywhere and they are bands of thick fibrous tissue, scar tissue that sticks organs / intestines together. They had to be removed during mum’s surgery so that the cyst / mass could be removed.
 
A standard hysterectomy takes 12 weeks to recover from, due to the extensive nature of mum’s surgery she is looking at a 12 month recovery time. It’s extremely frustrating as a few people have assumed that now that she has had the operation she should be back to full health. Peoples ignorance is really astounding. Mum was cut from just under her sternum to the middle of her pubic bone due to the size of the mass and the need to remove everything possible. 
 
It wasn’t until the middle of September that we found out that Mum had cancer ( now technically the cancer has been removed but medically she will not be classed as cancer free until she hits the 5 year mark.) The cancer she had was very small but also very rare stage 1a grade 2 Endometrioid Ovarian Cancer. The mass removed was a cyst that had wrapped itself around the ovary and the cancer. It was 25cm in length so nearly the size of a rugby ball. Thankfully the cancer was contained and hadn’t spread but mum will be monitored very closely for the next 5 years. Due to the nature of the cancer she can’t have HRT to help with the loss of her ovaries, hormones could help it come back.
 
Obviously for us as a family this rapid turn of events was very shocking. My body gave out on me due to the stress and I ended up in bed quite a bit over the summer. Well that combined with the ridiculous heat. My mum was the very last person who I would have guessed would get cancer. She has been vegetarian since 1973 and went Vegan two years ago. She is a perfect weight for her frame and despite having Coeliacs Atxia was reasonably active. Out of everyone I know she wouldn’t be the one I’d have said was likely to suffer with cancer. I was more likely – overweight, ex smoker not a brilliant diet. My mum really struggled with getting her head around being sick. 
 
She has told me herself ( and I checked before sharing here) that she felt embarrassed at the fact she had cancer, mortified at the fact she was ill. She didn’t want to be seen as weak and vulnerable. She had been extolling the virtues of a vegan diet to anyone who would listen for the last two years, a diet that will reduce your risk of getting cancer and here she was two years in with cancer. It was made very clear to me that this diagnosis was not to be discussed, so other than a few of my closest friends no one knew what was going on. If anyone asked I would just say I was stressed due to life stuff. 
 
It’s only in the last week that she has posted on her own Facebook page that she has had a cancerous mass removed. So after discussing it with her this morning to check it was ok I can finally tell you all what has been going on.
 
It’s why I have been having trouble sleeping, pain issues, more migraines, vertigo etc. It made me feel utterly useless. I wanted to be able to support my mum but I feel like my body betrayed me. However it’s been really lovely that I have spent quite a bit of time with her one on one. As many of you know I live an hour away from my parents and a lot of the time I am not well enough to travel. My parents have a caravan around 10 minutes drive away from where I live, so whilst my dad walks his dog on the beach mum comes to my house and we have a catch up for about 90 minutes. I have thoroughly enjoyed spending the time with her.
 
And some of you may have put two and two together and worked out why I made my mum the very special lap quilt for her birthday this year.
 
 
 
 
 
She is doing really well. Every time I see her she looks so much better than she did the last time. She is doing really well. Fingers crossed that we sail through the next 5 years with no issues.

It would be you

Yesterday was our 18th Wedding anniversary, we celebrated in style with a planned trip to hospital where I was booked in for a short Synacthen test ( as my cortisol levels were low or rather were in 2015 but my old consultant had never bothered to conduct this test and I had found this test result on going through some old letters) and a caffeine infusion. As this had all been booked in last Thursday by my hospital consultant we had presumed things would go smoothly. How silly we were, nothing ever goes smoothly for us.

The short Synacthen test is supposed to be conducted at around 9am in the morning when your baseline cortisol levels are at their highest. In 2015 I had been tested at 10.15 am just to check out the level. The cortisol level was found to be 107, I have written about this in a previous blog post. Basically my old consultant had said in a letter to my GP that he would run the short Synacthen test…..like a lot of things he said it never came to fruition. He promised to do a lot of things and never actually did, which amongst many things was the reason why I left his service. When I showed my new consultant ( new as in from December 2015) this letter the test was booked in for the following week.

When we arrived at the hospital yesterday immediately we asked about getting the short synathen test started and no one knew anything about it. I had to keep asking for anyone to take any notice. In the end they had to ring my hospital consultant to confirm he wanted this test to be completed. This was not my consultants fault whomever was supposed to have booked this onto the system hadn’t. The caffeine infusion was showing but not the shirt synacthen test. There were also issues with the caffeine infusion as the drugs had not been brought up from the pharmacy. So before we even got started the phrase piss up and brewery were already rattling around my head.

you can find info on the test here https://www.netdoctor.co.uk/medicines/liver-kidney-urinary-system/a7597/synacthen-tetracosactide/

A set of obs were done and then they said that they would put a cannula in and send me off for a coffee whilst we waited for the caffeine to arrive and my consultant to confirm he wanted the Synacthen test performed. I had to shoot down the idea of putting a cannula in early, its been done many times before and all that happens is it either blows or the vein collapses and the site can’t be used. We then have to go back through the fun of finding a vein that will co-operate. Thankfully after the staff talked  with the duty doctor, I was believed and the attempt at getting a cannula in early was dismissed. 

The time was now 9.50am, we had left the house at 7.20am, our dog sitter had to arrive at our house at 7am. The promise that we would be home by 1pm was starting to fade. The short Synacthen test takes an hour, the caffeine infusion takes two hours. We’d been at the hospital for an hour and were no further on than when we first arrived. Jay wheeled me down to the cafe where the queue was out the doors and there was no spare tables. Jay got us a drink from the newsagents and he got himself some breakfast in the form of a pasty. We got back to the waiting room at 10.30am. At 10.45am I told Jay that if we weren’t in the treatment room by 11.30am I was leaving. My head was having a bad CSF leak headache day. Being in a wheelchair means I can’t lie down and the chairs in the waiting room all had arm rests so it meant I couldn’t lie on those either. I tried to distract myself by doing some embroidery but the pain was making it harder and harder to concentrate. At 11am I asked Jay to ask the nurses if I could have some pain relief, just some paracetamol and oramorph. Normally I would bring my meds with me but for some reason I had forgotten.

At 11.20am I sent Jay into the treatment room to ask the nurses if there had been any progress on the caffeine infusion, I had given up on the synacthen test taking place. We were told it was all ready for me and to come on in. The nurse in charge brought me over some pain relief two paracetamol and codeine. It really pisses me off when hospital staff who despite seeing your prescription list decide that your pain doesn’t warrant what you would take at home. I hate the fact that hospital removes all autonomy, I manage my conditions better than any doctor or nurse ever has, yet when I go there they assume they are the experts. I pointed out that should I take the codeine I wouldn’t shit for a week and yes I used that language – because I had been sat in my wheelchair for 2 1/2 hours at this point and was in a serious amount of pain not just from my CSF leak but also my hips and spine. The codeine was binned and I got the oramorph I had requested.

I was then informed that they were going to now do the short synacthen test. Looking back now I believe they still didn’t have the caffeine from the pharmacy at this point and were doing this test to pacify me after basically doing nothing for the last two hours. You can imagine the shit they would have given me if I had rolled in 2.5 hours late for my appointment yet the same courtesy wasn’t extended to me. I am a massive supporter of the NHS, I am terrified at the Tory dream of turning it into an insurance based system but when there are 8 staff stood around chatting – and no it wasn’t about patients then you see that something really needs to change. I don’t want patients to become consumers or clients but I want them to be treated with the same respect that the doctors / nurses all seem to demand. They don’t seem to realise that there is a life for the rest of us outside of the hospital.

The first attempt at a cannula site was a bust, the vein blew . This was the state of it last night, the bruising is much worse this morning but thankfully it doesn’t hurt

The second attempt was fine but as soon as the Synacthen was injected I didn’t feel right . Sometimes I can feel a bit weird / light headed when blood is being drawn or I am getting an injection. Within a few minutes it usually passes. This however didn’t pass, I started to feel sick and dizzy. Then out of nowhere my face started to burn, it felt like it was bright red and was stinging. I said to Jay “is my face red?” he replied ” yes it is but it’s very hot in here”, I tried to let the growing sense of unease go but at the 15 minute mark when I was feeling more and more out of it I asked Jay to get a nurse and let them know I wasn’t well. All the sounds in the room had become too loud and I could smell a very strange smell, like cooked liver and over boiled veg. I kept complaining to Jay about it but he couldn’t smell it.

After seeing them stood around quite a bit all morning suddenly all hell broke loose. My bed was surrounded by 6 staff including the treatment room sister. My Obs were being done and piriton (IV) was drawn up. My normally low blood pressure that sits at 100/70 -90/60 was now 147/98 unheard of for me. My body temperature was now 37.9 having been recorded at 36.6 at 9.30am. My pulse was irregular at racing at 91bpm. I told the Sister that my blood pressure is never high and was told I was anxious due to having an allergic reaction. I couldn’t be bothered to argue as I was very frightened because I just felt so very unwell. Initially the IV piriton helped but after 10 minutes I could feel the reaction starting to come back as my face started burning and I started to feel very ill again.

Jay went and got the nurses attention again and I was given IV steroids. I have never had a reaction so severe that I needed steroids. This had been my worst reaction to date. Within 20 minutes of the IV steroids I was back to normal but then we had to wait around and be observed to ensure that the reaction didn’t start up again. I was fully checked over by a dr and at 1.50pm 5 hours after we arrived I left the hospital, with no caffeine infusion. I declined the infusion as I just wanted to go home and the staff were also concerned that although I have had the infusion before after reacting to the synacthen it was more likely I could have another bad reaction.

We finally made it through the front door at 3pm. A few hours after being home I emailed my hospital consultant who told me in all his years of being a doctor I was the first patient he has known to react to the synacthen test and then he said ” it would be you”. Basically if there is a weird reaction to have I’m your girl. He also backed the decision not to have the caffeine infusion.

I have been left with raised red bumps / rash on my face which always happens after I have an allergic reaction. That will fade over the next two weeks and I will get very dry skin which will peel off as the rash is fading. It’s a bit sore from being so dry but it’s still nowhere near what I went through yesterday.

This morning I feel like I have been run over by a bus. My HS has flared up on both sides of my groin and I have a serious amount of joint pain. For the next few days I am going to take it very easy.