Merry Christmas 2015

 

I promise this will be a short post, as like many of you the run up to Christmas is chaotic in our household and I am fully aware that today’s post will be published on Christmas Eve.

This years Christmas celebrations will be a more subdued affair due to my crazily ill health this year. The stress Christmas is inducing is causing what feels like a constant barrage of Meniere’s attacks. I wouldn’t mind but the only source of stress is the pressure I am putting myself under. I am hoping in 2016 I learn that things don’t have to be perfect because perfect doesn’t exist in reality.

The week leading up to Christmas is always quite a lonely one for me. Friends and family are wrapped up in their own celebrations / plans (as they should be) and hubby is enduring 12 hours days in the 7th circle of hell also known as retail, in the lead up to the big day. Those extra three hours of him at work impact me greatly as by the time he gets home he is fit for nothing and he just wants to get to bed, so he gets some sleep ready for the next day. So company is a bit thin on the ground.

I try my best to keep on top of things at home, so that he doesn’t have lots of jobs to do between shifts. I am lucky in the fact that unlike many he doesn’t have to work at all for three days over Christmas. I am mindful of the fact that many of you will be working and don’t get that luxury. I hope at some point you get to put your feet up.

Hubby and I will be spending the time with our three mutts. Willow is recovering well and her fur is now starting to come back thick and fast. She still resembles what my friend Heather said “an Ikea rug” but we are hopeful by the end of January she will have all her fur back. We are looking forward to spending some time together alone for the first Christmas in quite a few years.

This is the last blog post of 2015, it’s been a crazy year but it has had some wonderful highlights.

I hope 2016 is kinder than 2015 has been to many of you and I hope you all have a wonderful Christmas. 

 

 

The happy in his work Christmas Elf!

He preferred this costume Emperor Palpatine for Star Wars Day

Merry Christmas!

 

Willow

For those of you who follow me on Facebook Click this link to be taken to my page, it will be no news to you that as usual things have been quite eventful in The Myasthenia Kid household again. Makes a change doesn’t it?

The week before my trip to Plymouth, hubby took Willow to the vets as over the last year she has developed a lump in the centre of her back that had started to grow quite rapidly. It had been checked out in June by the vets and we were assured all was ok however due to its increase in size and the fact she was losing fur where the lump was it had started to worry us. The vet who examined Willow said that the lump would have to be removed and that he was more than certain it was a lipoma (a fatty lump). The lump on her shoulder (which we had been told for years was where her microchip had migrated and scar tissue / a cyst had formed) had also grown larger, so whilst her lipoma was removed they would also remove this lump.



As you can see from the above photo they were sizable lumps and had been checked regularly. However every time they were checked the vets informed us there was nothing wrong and to remove them would be purely for cosmetic reasons. Willow’s surgery was booked in for the Thursday of the same week. Jay and I weren’t looking forward to this as Willow reacts very badly to general anaesthetic, it’s not in a dangerous way but it is distressing for her and us. Basically she is out of it for hours with eyes like saucers. From the minute she comes around she cries / howls / barks and can’t be comforted. Each time she has had to stay at the vets she has come home hoarse. So this time we told the vets that she would be coming home as soon as she regained consciousness, this was to protect their ears and to limit the amount of stress Willow would be under.

Willow was dropped at the vet’s between 8:30-9:00am as requested. We had been told that to keep her calm they would sedate her whilst she waited for her operation. She had initially been first on the list but was bumped to second when an emergency came in. At 12:30pm I received a call from the vet, my heart was in my mouth, with Willow having breast cancer in January this year and having lost a family dog to G.A when I was 16, you can just about imagine the thoughts rushing through my mind. The vet who was doing the operation had discovered another lump near Willows front leg and wanted to know should she remove it whilst Willow was on the table. I gave the ok but was perturbed when the vet then added that should any of the lumps look suspicious they would send them off for a biopsy. The first vet to see her had been sure they weren’t anything sinister and now the second vet seemed to have a different opinion. I wouldn’t know what they found until they rang to let me know she was awake and had made it through the operation.

I didn’t get a phone call until 15:00, the operation had been a long one. Thankfully all the lumps had been fine and exactly what they were expecting, two cysts and one lipoma. However the microchip was not in the lump that was in her shoulder, that was safely in the correct position at the back of her neck. So the cyst had formed either through an injury or just because that is the way things go. The lipoma that had been removed was the size of a small orange and was at the point of rupturing, which would have been a nightmare should that of happened. Willow was already crying even though she was barely awake and we were told that we could collect her at 16:00. I was so relieved, I called hubby as he was at work, which must have been awful for him. He told me he would be there on the stroke of four to bring her home.

I could hear Willow howling in the car as hubby reversed onto the drive. It was going to be a long 12 hours as this is how long her adverse reaction goes on for. When you are well, looking after a sick pet can be exhausting when you are already chronically sick yourself looking after a poorly pet is beyond tiring. I wasn’t quite prepared for the sight that greeted me. I will be honest she looked like she had been butchered. She was covered in blood and the stitches had a look of a Sunday joint of  raw meat about them. She was happy to be home, even if at this point she was a space cadet not  really knowing what or where home was. I suggest if you are easily made queasy scroll really fast past this photo.



To say I was shocked or even we were shocked at the state of her would be a massive understatement. I don’t think either of us had prepared ourselves for what she would look like returning from the vets. Jay (hubby) had to dash back to work and it quickly became evident that if I didn’t sit and cradle Willows head constantly, whilst talking to her to reassure her that she was ok, she would start to howl. I couldn’t even make phone calls without her starting to cry. She was ravenously hungry when she came home so she had some tinned food that the vet supplied us with. On her discharge notes it said she wouldn’t be hungry until the next day. The person that wrote these notes has obviously never owned a Weimaraner. Every time one of mine come home from the vets the first thing they do is head to the kitchen to see what poorly food they can have.

Willow also refuses to sleep when she comes home and fights against the sedation. I gave up sitting downstairs and went to bed with her cuddled up against me. I managed to quieten her down but every few minutes she would start crying quietly again. It’s awful to see her in such a bad way and not being able to completely comfort her. As the hours ticked by (rather slowly) her pupils came down in size and she started to be with it a little more. She is also desperate to go out for a walk when she gets home, so it was excellent timing that hubby was on a late night as they wouldn’t be getting an evening walk.



Frankie and Mollie were excellent around Willow. There was no play fighting or jostling for cuddles like there normally is. To say they were giving her a wide berth was an understatement. When I took this photo of Frankie and Mollie, Willow was with me on the big sofa. They’ve never shared the small sofa like this before and haven’t again since Willows stitches have come out. That’s Frankie at the top of the sofa and Mollie underneath.








Willows first appointment back at the vets was booked for the Saturday morning, it was a simple wound check and by the Saturday Willow although feeling very sorry for herself (and who can blame her) had got over the GA. The vet was very happy with her progress and gave her wounds a clean so that she was no longer covered in blood. Her wounds were starting to dry up and scab so the oozing was very little. However what there had been in those two days had been significantly more than we were expecting and we have seen her through quite a few operations.



We knew when Willow was feeling back to normal when she nicked Frankie’s dumbbell. This is something she always does. Sleeping with it in her mouth so that he can’t get it back until she says so.
The next worry was the fact my appointment in Plymouth would mean I would have to leave her. Had I not desperately needed to see my new consultant I would have happily cancelled. I left our poor dog sitter with a two page sheet of A4 list of instructions including telephone numbers to cover any eventuality. Due to the position of Willows wounds nothing could be done to prevent her from scratching and inadvertently pulling the stitches out. This would be the worst case scenario and we would be an hour away in Plymouth. As it was Willow was absolutely fine on Tuesday but decided to rip a stitch out on Wednesday when we were home. Bloody dogs! So an unexpected trip to the vets ensued. Thankfully the vet was happy that the stitch didn’t need replaced but as a precaution as the whole wound was looking red and raised she was placed on antibiotics.

Thankfully this Monday (14th Dec 2015) Willow had all her stitches removed. We had been warned by the vet last Wednesday that due to the infection, the shoulder wounds stitches may have to be left in for a few more days. We tried everything to stop her scratching, dressings – they fell off in one shake, a sock on her back foot, taped on – they were found in all sorts of places including the back garden. Since her stitches have been removed she hasn’t scratched at all. Now I keep finding great chunks of scab on the floor but it is all healing nicely.







Now just need to start a go fund me page to cover the vets bill as not all of it was covered by insurance…………….



Exhausted.com

Exhausted is an overused word however it is the only way I can describe the state I find myself in. Yesterday (Tuesday) was my trip down to Plymouth to see my new consultant, (after I got rid of the one who accused me of spending too much time on the Internet looking up syndromes to have) and catch up with family and an old school friend. 

The appointment went really well however due to two road traffic accidents in Plymouth which caused complete gridlock in the city, the rest of my plans went awry. The traffic was so bad it actually took us an hour to get out of the multi storey car park at the hospital. With my husbands blood pressure slowly climbing and me rapidly fading, I had visions of the red cross coming to our aid as I couldn’t see how on earth we were ever going to get home. It took us over two hours to get back to my parents house, a journey normally of 20 minutes to pick up my medication and various other bits and bobs that I had left there before setting off for my appointment. We then had another hours travelling time to complete the journey from Plymouth to Exmouth. All in all yesterday I spent over 4 hours in the car. This catastrophe was not in our plans and being in the car so long has caused my legs to refuse to work properly and climbing stairs is now an endurance sport which has to be completed by shuffling up the stairs on my bum. What a glamorous life I lead!

So my blog post this week will not be a long one, when I say that it just depends how much I can write before crashing completely. I have got up very early to compose this post because the worry of not having it completed was keeping me awake. I do like to have something to worry about.

As usual I suffered very badly with pre hospital visit jitters which meant a pretty much sleepless night Monday into Tuesday. I woke up at 02:30am and didn’t get back to bed until gone 9pm, I have woken up at 4am this morning. This is just begging for a Meniere’s attack to happen, which I can already feel building up. I had been told by numerous people that the doctor I was going to meet was lovely but in the back of my mind there was a niggling doubt that I could be the one patient that he wasn’t nice to. You see my neurologist I saw many years ago was treated like a god amongst the Myasthenia Gravis patients, not a bad word was said about him. The problem was that he was a consummate performer who was very nice to your face but had a nasty habit of writing utter shite about you in his notes. The neurologist treated me very badly and I highly suspect that it was him that diagnosed me with somatiform disorder. So I guess you could say we (both hubby and I) have trust issues when it comes to doctors.

When the doctor called my name in the waiting room, I had my back to him due to the lack of space provided for wheelchair users (that is a rant for another day that hospitals seem to be so unfriendly towards wheelchairs). When I turned around to face him, there was a look of shock on his face. He then said something like “you need no introduction, I can see the family resemblance”. This Dr treats my sister also and due to that has also met my mum. People say that we all really look-alike but I just don’t see it. Yes we look like each other but it’s not (to me) like we are clones! So that was nice as he hadn’t seen my sister for a few weeks but he recognised me. My last consultant also saw my sister but never actually acknowledged the link between us despite me referencing her on more than one occasion simply because we have a lot of the same symptoms.

The new doctor was really friendly and open to ideas. In fact he brought up stuff that I had on my list of the most important things to discuss with him. My list read as follows

1. Mast cell activation disorder

2. Fluid intake

3. Stomach / bowel problems / adhesion’s

4. Alice in Wonderland syndrome or Todd’s syndrome as it is also known. This would be brought up if I was feeling brave enough as I have never mentioned it to any doctor before in case they thought I was nuts.

As it happened one of the first things we talked about was the Alice in wonderland syndrome. This was due to the fact he brought up the Myasthenia Gravis / Ptosis / Nystagmus and breathing issues. He doesn’t think I have MG, he thinks my Ptosis (droopy eyelid –You can see a picture of it here) is being caused by hypoperfusion (so not enough blood flow to my brain, essentially low blood pressure in my head). I brought up the fact that when I have Ptosis or MG symptoms my blood pressure is normal but he quite rightly pointed out that it doesn’t mean my blood pressure is normal locally (as in my head the pressure is low). I can’t argue it makes sense, mestinon or pyridostigmine bromide as it is also known raises blood pressure, if the blood pressure is low in my head the mestinon would have the effect of raising it. I did mention about the ice pack test also being positive and that is an indication of a problem at the neuromuscular junction. He said he felt it was possible that both my sister and I had issues with the ganglionic receptors in our brains. As I told him I roughly understand that but much more and it goes over my head.

As we were talking about MG symptoms I brought up the nightmare of 2013, when I had all the constant nystagmus and the weird visual symptoms that lead me to believe I have Alice in Wonderland syndrome. He agreed with me that it sounded like I did indeed have this, what shocked me more was the fact that he had heard of it and didn’t treat me as if I was a complete loon, when I was describing watching birds flying across the sky only for them to rewind and do it again.

He also believed I could be suffering from another weird syndrome that causes sudden desaturation (not enough oxygen in your blood). He did tell me what it was but its name was far too long for me to remember. He told me at the start of the appointment that he had only had a quick look at my notes however it soon became clear that the poor man had taken an in-depth look at them and had already come up with a treatment plan.

Due to my exhaustion I can’t remember the exact flow of the conversation and what we talked about next and in what order. So I will be brief and explain what I can remember.

My excessive fluid intake would come under psychogenic polydipsia, as I do not have diabetes insipidus. He thinks that title is harsh because I have had excessive thirst ever since I was a baby and I could in no way be able to form a habit of drinking too much from that age. So there is something wrong with the hypothalamus part of my brain that controls thirst but we will probably never know what.

He believes I have Mast Cell Activation disorder just from reading my notes and looking at the strange reactions I have had with many if them. The closest I have come to full-blown anaphylaxis was when I had CT contrast dye injected. It’s an experience I don’t want to repeat. I was also able to show him the blotches that had come out on my neck that very morning, despite not eating / drinking or doing anything different. Due to the Mast Cell Activation Disorder or MCAD for short he wants to change my Betahistine that I take for Meniere’s disease to Cinnarizine (stugeron). As MACD is caused by histamine the Betahistine will not be helping me and by strange coincidence since taking it I have noticed that my skin has become much more reactive. He isn’t convinced that I have Meniere’s disease, I am, so he is requesting a copy of my audiology notes as they hadn’t been included in the file that was sent to him.

He thinks a lot of my stomach / bowel / adhesion issues are being triggered by MCAD. If we could get the MCAD under control it maybe that we can get those issues under control. The adhesion pain has been quite bad since the 29th November. I am having sudden onset of really sharp pains which take my breath away and leave me doubled over. As fast as they come on they go again.

The weirdest revelation of all was that he doesn’t think I have PoTs……….. He believes that my problems stem from my blood pressure being all over the place, my heart (or brain you could say) is responding by beating faster in an attempt to keep my blood pressure elevated. He wants to do another tilt table test, I have politely declined for the moment just due to the fact how ill I was after the last one.

He was incredulous that I had never had an echo cardiogram ( a bit like an ultrasound for your heart) to check that it was actually working ok and that I don’t have  a mitral valve prolapse. This should be a standard test that is carried out of everyone who has been diagnosed with EDS. For some reason my last consultant didn’t think so and I can’t seem to get my gp to move forward with this probably because I have so many problems it just gets overlooked. So my new doctor is going to ask that I get one done. If I don’t get it he will arrange for it to happen in Plymouth.

So due to his theory on it being my blood pressure causing the tachycardia he has started me back on Midodrine at 2.5mg once a day for a few days to then increase it to twice a day, then three times a day. Then I am to slowly get myself up to 5mg three times a day. We all hope that by slowly titrating it I won’t react as badly to it as I did the last time when I ended up with awful bladder problems and adhesion pain. 

When we talked about the bladder problems, I brought up the possibility of Fowler’s Syndrome. When I brought this up with my last consultant this was when he accused me of looking things up on the Internet, so I could have more syndromes. This doctor knowing my sisters history, that she has a sacral nerve stimulator so that she can use her bladder, agreed with me. He told me because not many doctors had heard of Fowler’s Syndrome this was perhaps why I had encountered such hostility. The Fowler’s syndrome would cause the acute urinary retention and the problems I have had when in hospital or at home when they have fitted a catheter and my bladder has still refused to empty due to the fact the valve at the neck of the bladder had clamped around the catheter. Again he couldn’t understand why I had been taught to self catheterise and hadn’t had the bladder issues fully investigated. I explained to him that when I raise this issue with my doctors I get told I have already had lots of tests done. It is infuriating because the doctors seem to blame me for the wrong tests being done, so now nothing gets investigated and it is only the symptoms that get treated.

I have just looked back at the amount of stuff I have written after claiming I wouldn’t write much. I don’t know how I am putting this together as I am so tired I can barely string a sentence together let alone see the screen.

Anyway back to the Midodrine, once I can tolerate this medication at the full dose of 5mg three times a day, the doctor wants me to then slowly add in Ivabradine. I have tried this drug before and it was wonderful at stopping the tachycardia but my blood pressure dropped very low. This is what my new doctor has picked up on, where as the old consultant was happy to just say “you obviously need a fast heart rate to keep your blood pressure elevated”. This doctor wants to get to the bottom of this and raise my blood pressure and then drop my heart rate. It was actually something (on my extended list) that I wanted to suggest. I have to say I was  in shock when it appeared both the doctor and I were on the same page. That has never happened.

I can’t really remember much more from the appointment and I will be honest I am starting to fade a bit here. He wants to see my print outs from my tilt table tests to see what my blood pressure and heart rate did. My old consultant handily forgot to include them in my notes. My new consultant ordered a load of blood tests, one for my testosterone levels (due to my facial hair), a repeat of the prolactin to see what that is doing and countless others, I was robbed of 4 vials worth of my blood. 

The assistant that took my blood wasn’t great, she had a constant sniff (that always makes me feel sick and is a pet hate of mine), she managed to jab the first attempt straight into a nerve and then had the gall to shout at me when I moved. She tried to tell me she hadn’t hurt me, I asked her “why would I shout out and jump if you hadn’t hurt me?” I was furious. I have never moved during a blood test, I have had 100’s of them, I have had 3 doctors jabbing me in the feet and both arms at once to get blood. So I don’t jump about when people are trying to get blood from me. My point was proved when she then got a vein on the back of my hand and I continued chatting with her whilst she got my blood. It didn’t help that I was tired and dehydrated when she was getting my blood but to try to tell me she hadn’t done anything to make me jump was ludicrous. My husband was getting quite tense at this point as he has seen me having blood taken on many occasions and has never seen me react like that.

Despite the horrible blood taking episode I would describe myself as slightly elated after that appointment. This doctor wants regular email updates on how I am doing……I know what doctor does that? My last doctor gave you ten minutes of his time and you didn’t see him again for 6 months if you were lucky and they remembered to book you an appointment. I had this doctor for 80 minutes.

My husband informed me last night as we were going to bed, I didn’t let the poor man finish a sentence without interrupting him. He said I was gabbling away like a loon, like I always do when I am nervous. Hubby is happy, he said he feels for the first time in a very long time that we are starting to get somewhere. As I told the doctor yesterday, I know that there is no magic wand, I know that there is no cure, I would just like to feel better and be taken seriously.

 

The Fancy Dress Party

So last Saturday I let my hair down and enjoyed myself. I apologise to those of you who believe I should continually go around wearing sack cloth and ashes, never enjoying myself. I am suffering for enjoying myself? of course. Is the pain and suffering worth those few hours of fun? Hell yes. Will I be doing it again anytime soon? Not on your nelly.

I would just like to take this opportunity to say I am not paid or endorsing any of the products featured in this post. All products have either been birthday / Christmas presents or bought with my own money. 

This years joint birthday party was postponed due to my continued ill-health. Normally we hold a get together of our closest friends on the nearest Saturday night to our birthdays. This year it would have been Halloween, so before we had to postpone it we had decided this years party would be fancy dress.
The town that I live in, Exmouth in East Devon has a massive tradition of fancy dress on New Years Eve. Before I moved to Exmouth nearly 20 years ago, I had never heard of this tradition. I am ashamed to say I have never been out on the town in Exmouth on New Years Eve. When I lived in Plymouth, I only went out once on New Years Eve and I can’t say I enjoyed it. The pub was packed, we’d had to buy tickets (that irked me somewhat before attending) and it was no where near as much fun as I had been led to believe. I digress as usual, anyway Exmouthian’s like to don fancy dress at the drop of a hat, so I knew the fancy dress theme would go down well.
Initially I had decided to dress up as Dorothy from the Wizard of Oz. I actually own this costume as I used to wear it into work during Christmas week, which made work rather fun. During my time at work I have dressed as a Christmas pudding, a rag doll, an angel, a fairy and a farmer, just to name a few. However as the end of October approached I changed my mind on the Dorothy costume and decided for a laugh I would dress up as my husband, wearing his full work uniform. Luckily he was replacing his shirts, so I used an old one (so as not to cause any damage to his uniform) a pair of his work trousers that had a hole in the bum (carefully stitched up), his old stained work tie and a jacket that the button had been smashed when involved in an incident with a roll cage. So no actual real uniform was harmed in my use of it (just in case anyone from his work is reading this!).
The costume was the easy part, I would have to employ some skill in managing to give myself his famous five o’clock shadow. Now I know I have moaned about sprouting facial hair but believe me even if I had let that grow in the name of art it wouldn’t have been impressive enough to pass muster. Thank goodness for the Internet and Youtube. I had contacted a friend of ours who is mad keen on make up and who I blame solely for my latest obsession Mac Makeup, on how I was going to do a stubble effect. She pointed me in the direction of YouTube and there were countless videos on there about how to produce a designer stubble effect with face paint. After watching the video’s a couple of times I then went online to purchased black and white face paint along with an item called a stipple sponge.

A stipple sponge is a textured sponge that special effects makeup artists use to create stubble, beards, cuts and grazes. I will admit I was extremely lazy and didn’t bother to have a practice run on my make up which I should have done. All I did with the sponge was rub it on the black face paint and apply the sponge to the back of my hand to see what it created. Once I knew that I could apply the sponge quite lightly to get the desired effect I was reasonably happy I would be able to create the desired effect on Saturday night. The old me, pre-ill-health would have practiced the make up several times, I was low on energy leading up to the party and couldn’t spare a drop practicing.

On the night I applied my usual foundation and concealer as a base (to provide my skin with a barrier to the face paint, in case of an allergic reaction as I have very sensitive skin). I moisturised my skin well during the day, as I know it can dry out when I have applied foundation giving me a bit of a flaky appearance. Once the base was on I then had to darken and enlarge my eye brows using an angled brush. My husband has much darker and fuller eyebrows than my own, doing the stubble effect without making up my eyebrows would have looked ridiculous. So I thought in for a penny in for a pound and went for it. I then contoured my nose to give me an altered appearance. I just used a matt brown eyeshadow very lightly applied to the outside of my nose and blended it in. I then applied a grey / blue matt eyeshadow to my under eye area, my husband has darker skin there so I wanted to ensure that I had the same. I then used a matt light brown eyeshadow over my eyelid again blended in well. I used the eyeshadow right up to my false eyebrow. Then I took a deep breath and approached the application of the fake stubble. First I applied white face paint using a stipple sponge, once that was applied I went over it with the black face paint, again applying with a stipple sponge.

I am terrible at taking selfies! Also both eyebrows are darkened but the photo makes it look like I only did one.

I apologise for the poor quality of the photo, it was taken in the evening with insufficient lighting. With the picture below you can see my make up in the context of the full costume.

I would like to point out that is a cushion acting as my belly!

To recreate my husbands hair, which is far shorter than mine, I slicked it back using hair gel, whilst my hair was still wet. I used a very low setting on the hairdryer to “set” my hair. Once the outer hair was dry, I then applied dry shampoo to give it a grey look and concentrated it on the area where I wanted a white streak. Jay has had a white streak in the front of his hair for as long as I have known him which is 19 years next February. This was then coated with ample amounts of hairspray.

Once my hair was completed, it was an enforced rest period. Due to the amount of rest I needed this meant I was fully made up from 5pm with the party not starting properly until 8pm. I needed to get my pain under control as my back had been behaving really badly for a week prior to the party.

Jay dressed as Fox Mulder from the X-Files

 There is always one part of my body that likes to really play up before a big event. More often than not it is my back and it didn’t disappoint. Usually when I have back pain it is a trapped nerve caused by my shifting vertebrae, this pain was different and it is something I haven’t suffered from for many years. My back is continually going in and out of spasm. Any movement of my arms above shoulder height, so moving my arms so that my elbow is in line with my shoulders will set my back off. Standing still, not that it happens very often, also sends my back into spasm. Despite being maxed out on all my painkillers and muscle relaxants on Saturday, the pain was incredibly intense. For all of the party I had to sit with my electric heat mat on my back and all that did was take the edge off enough so I could enjoy myself.

I had sworn off alcohol for months leading up to the party because every time I had a drink (just a small glass of wine) it would induce the spins. It has been awful not being able to have the odd glass of wine or gin and tonic. I am not a massive drinker but I do like the odd one throughout the year. I know many people with Dysautonomia can’t drink as it exacerbates their symptoms, I can but the next day I will suffer with a racing heart and whilst drinking I will have problems with things like temperature control and I will become freezing cold. I do infrequently use a small amount of alcohol as additional pain relief when all else isn’t working. On Saturday night I tried a small amount of sangria and to my joy found that an hour later I didn’t have the spins, which has happened all summer long (so I stopped having any alcohol). I decided to then have a larger amount (half a glass) and I waited an hour to see if I got the spins and I didn’t, so I then decided that I would let my hair down and have a few drinks. It relaxed my back enough to reduce the pain. It’s now Monday morning and my back hasn’t gone into spasm. I am not prescribing alcohol as a cure or recommending anyone else do it. I certainly won’t be drinking again until Christmas, regardless of what my back does in the meantime.

Our guests made a supreme effort in their fancy dress costumes so I wanted to share them here:

The Christmas Elf

Beetlejuice

Snow White

The Joker and Harley Quinn

Grumpy Cat

The Cowboy

Immie and me (another terrible attempt at a selfie!)

We held a vote for the best costume of the night, embarrassingly I won but as we had bought a prize ( not expecting either of us to win) I gave the prize to K who came as the Joker. Not only did he apply fake tattoos, spray his hair green he removed his chest hair!!

Well done to The Joker, for winning best in show and thank you to everyone for dressing up for the party.

Even the alien got involved on the night.

Frankie decided to sit between Jay and I during the pub quiz. Hubby and I won for the third time in a row! I can’t take much credit as it was him who answered the most questions.

I was very surprised that the dogs didn’t get scared due to the fancy dress, I know some dogs can get funny about costumes. They did sulk when I got dressed in hubby’s uniform. They equate the uniform with going to work and on occasion my husband does work night shifts, also I wore a version of that uniform many moons ago. I am sure that for a moment there that they were convinced I was going off to work, which is weird as I haven’t been for 8 years.

 As you can see from the photo above, I have the tell tale sign of an electric heat wrap, the elastic belt squishing down my belly so the wrap is nice and close to my back. This is always my reserved chair during a party as it’s the closest one to a plug socket.

I am paying heavily for having fun as I always do. Long gone are the days when after a night out I could get up and carry on with normal life. Sunday morning I was woken up at 8am by the feeling that someone was stabbing me in the stomach with a knife. The pain was off the charts, I stumbled to the bathroom as I thought for a moment I would be sick, thankfully I wasn’t. The pain continued it was what I class as my 10/10 pain. I started to lose consciousness for a few seconds at a time however I managed to take my morning meds and some oramorph. I then passed out again and then lay in bed wondering if I should wake up Jay. I didn’t because I knew I had more chance waking the dead and I also knew he would call an ambulance. Eventually I went back to sleep but was woken again with the horrific stomach pain at 10:20am. Jay came into my room and got into bed beside me. I had to beg him not to make any movements that would rock the bed, as anything other than lying perfectly still was causing the pain to get worse. Then within 15 minutes the pain had disappeared, I was just left nursing a hangover.

During the evening the abdominal pain started up again, I took some buscopan and oramorph and went to bed. On Monday (the day of writing this) I have pain it’s probably 7 or 6 /10 so much less intense but I am acutely aware of the fact at any moment it could ramp back up again. I have decided to fast today and have only liquids. I can only sip them as taking on too much in one go makes the pain worse. I don’t know why it started up it hasn’t been this bad since 2013. I really hope I am not in for months and months of pain again.

I think this sleepy picture of Frankie sums the mood up perfectly and explains why he won’t leave my side.