Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

Side Effects

Some weeks I really struggle to come up with a topic on which to blog about. This is one of those weeks. In fact it was quite by accident that I remembered this morning that I hadn’t written this week’s blog post which is due tomorrow. Nothing like an unwritten blog post for you to find numerous jobs to do instead of writing! I have practically had to chain myself to the Chromebook so that something, anything gets written. Unfortunately this weeks struggle is due to my medication being altered.

The new dose of antidepressants has knocked me for 6, yes my mood has improved greatly but I am just exhausted 100% of the time. When I am up during the day I feel like I am working through a haze best described like you had a couple of glasses of wine with lunch except its 8am and you haven’t been drinking. I may get a couple of hours in the middle of the day where I don’t feel so out of it but then it quickly returns. That isn’t the only side effect I am having.

Mirtazapine is known that it can play havoc with a person’s appetite. On 30mg a night Mirtazapine did nothing to my appetite it neither increased it or decreased it. Now I am on 45mg a night and I am hungry all day every day. Its like being on steroids all over again. Despite being on my restricted calorie diet and the fact that I shouldn’t be feeling hungry at all, I am battling daily to stick with it. The hunger hasn’t subsided at all and thankfully although I haven’t put on any weight, it isn’t nice feeling hungry all the time and knowing that you can’t eat because if you do, you’ll be the size of a whale very quickly.

It’s also making my dry mouth worse. I already drink an excessive amount day and night due to a faulty hypothalamus. Something I was born with, but it is getting ridiculous as the amount I am drinking through the night means hourly to half hourly I am getting up to have a wee. Lack of sleep or broken sleep is not helping the feeling of having to push myself through a fog to function. In fact as I am writing this I am realising that although my mood has improved it is coming at too higher price. I haven’t even told you about the worst symptom that the increase of medication has caused and that is constipation – there I said it, I’m full of shite!!

My bowels have always been healthy and regular. The only times I have ever had problems going to the toilet have been due to codeine, one dose of that and I am horrendously constipated or when my bladder and bowel decide to shut down for 24 hours. So I was shocked to discover that a well-known side effect of Mirtazapine is constipation. I have had enough to be honest. After two days of struggling to go and feeling like the process was more akin to giving birth than having a dump I decided I better take some laxatives. Again something I have rarely taken in my life. Morphine has no impact on my bowels – which causes all my doctors much consternation because apparently that’s just not normal. But it’s true I have no problems going at all. But I am in agony due to the constipation the increased dose of Mirtazapine has caused. 

Of course I could have just eaten an excessive amount of Sula drops – the constipation would have been over much more quickly. Instead last night I took a mega dose of Senna. Now I have been 3 times but I am still in pain. I managed to go without any problems but I just feel like I am still full of shite and it is making me feel well crappy to be honest. 

Due to having a history of bowel adhesion’s and having to have them operated on I don’t tolerate stomach pain very well. It is a pain that really gets to me quite quickly. Maybe I am over sensitive to it but it is not something I am prepared to put up with. Taking senna every night is not an option as all it does is cause my bowel to be overactive for the next 24 hours and causes me adhesion pain. So the only solution to the issue is to stop taking the 45mg dose and drop back to the 30mg one.  I will obviously monitor how my mood is doing and see the doctor again if I need to but feeling better mentally is coming at too higher price and too much pain. I have been on the increased dose for over two weeks and if anything the side effects are getting worse and not settling. 

Another thing I have noticed is that it has taken away my drive to sew or embroider. I haven’t really wanted to do anything and I am having to force myself to do anything at all creative or to do something other than just sit in front of the TV for hours at a time. Most of the time I can’t even remember what I have been doing. It is a crazy situation to be in.

With all medications you have to weigh up the benefits and risks. The risks to me is that I am just not feeling like me on the increased dose. I don’t like feeling like this. Maybe what I have taken has been enough to get me over this sticky patch. I will soon find out but I know I am not willing to persevere with side effects that are this bad on so many levels.

Changes

 

I am not very good with change these days, when I worked it was a culture of adapt or die as things changed constantly but when your world is as small as mine changes happen less frequently and when they do they can rock your world.

 

For the last 20 years I have had the same neighbours. When I moved into my flat back in 1996, my neighbours rented the flat below mine. When we moved to our current location I had no idea that my old neighbours would be living next door. We laugh about it and say that I am stalking them but it was purely chance. They lived on the street I wanted to live on but when they moved I had no idea where they had moved to. So when we were looking around the house for the first time P stuck her head out of the bedroom window and accused me of making the house prices drop. We have been good friends with our neighbours for years and know that should we ever need them day or night they would be there for us. As they proved the night or more correctly 3am in the morning six years ago when Jay was hit by a drunk driver in a stolen car. Having no family in Exmouth means that we rely on friends to help us out. Our friends have become like an extended family, so it has been very hard to accept that this will no longer be the case.

 

On 30th November P let me know that her tenancy had been terminated. Through no fault of their own they would have to move, the landlord had decided that a member of their family needed the house and now P and her long-term partner would have until the end of February to vacate the premises. Obviously it has been a deeply stressful time for them both, house rental prices in Exmouth are astronomical, when you add in agency fees and the cost of moving, it makes it very difficult to find somewhere. Thankfully they have but hubby and I are left without them. They will still be in Exmouth but currently it feels to me like they may as well be moving to the other side of the country. It seems selfish to be sad that they are moving when it is their lives that have been turned upside down but I hate it. I have been left feeling very unsettled and it’s not the only change I have had to face.

 

A few weeks into December we received a letter from our doctors surgery that informed us that our gp was leaving the practice mid February. Our doctor is one of those gp’s that goes above and beyond for us. He is the only one that has ever understood the stress placed on Jay looking after me. Whenever I speak to him he always asks after Jay and he does the same when hubby speaks to him. If I ring to speak to the duty doctor he always rings me back, as he knows all my drug allergies and various medical problems. We know that whenever we need him he will be there and now he is going. I am terrified of what my new doctor will be like, my current gp has learnt alongside me as I have been on my journey of understanding EDS and PoTs / Dysautonomia. When he took a sabbatical last year he worked as a gp in a different part of the country and diagnosed a young woman with EDS. He proudly told me this when I saw him on his return, he told me if he had never had me as a patient that wouldn’t have happened. That was a really nice thing for him to say. I know he’s not a friend he is our doctor but I am really going to miss him. With both him and my neighbours leaving it feels like our safety net has been pulled out from under us.

 

I can’t say that I see our neighbours or our gp on a regular basis but the thing is I know they are there if I need them. When things go wrong I know if it’s medical I can call the surgery, if it’s something to do with the house I know I can rely on P’s partner to help. Numerous times he has helped us decorate, nail down flapping fence posts and rescue the dogs on the night Jay was hit by another car. They have acted like family, I am worried that we will lose that when they have moved.

 

I know they aren’t moving to the other side of the planet but I also know how easy it is to lose touch with people. I experienced it myself when I moved from Plymouth to Exmouth. I tried keeping in touch with my friends but it felt like it was all one way traffic. Unless I rang them I never heard from them, I guess it was out of sight out of mind. I have also had friends leave the workplace, still living in Exmouth but you lose the friendship when you don’t see each other everyday.

 

The change or the prospect of change has hit me hard and now my anxiety levels are through the roof. I am no longer sleeping properly (I haven’t done since P told me the news on 30th November) and I find myself getting anxious over the slightest thing. My anxiety is waking me from sleep and I am constantly having my stress dreams where I am trying to read a book but instead of letters there are symbols and the pages are turning too fast for me to read what is on the page. I get so annoyed with these dreams that I wake myself up, which then leads to less sleep, which then leads to an increase in my pain levels. I just can’t seem to win at the moment.

 

I am however winning on the gluten-free front. I have had around a week now with no stomach pain, diarrhoea or excessive wind. It seems really weird not to be guffing all the time, just goes to show what a an old wind bag I was previously. It is really weird not having a stomach that blows up the minute you eat or drink anything. Since giving up gluten I have also had no reflux whereas over Christmas I was waking up during the night with a mouthful of vomit, choking. My skin rashes are also clearing up and my hidradenitis suppurativa has also improved. I don’t want to say my HS has gone as I will end up with a very painful abscess
This week is a busy week with a gp appointment (probably the last time I will ever see him) and I have my caffeine infusion on Thursday, today if you are reading this blog on the 12th January. I class any week with more than one appointment in it as a busy week as I will need several days to recover afterwards.

molstarwars

Mollie on her dad’s new Star Wars bedding

New Year

I haven’t seen the new year in for several years, I’d love to but by 8pm most nights I am in bed, if not asleep, well on the way. The Myasthenia Kid household is just pure rock and roll when it comes to celebrations.

 

newyearseveimg_20161231_190406_468

 

New Year’s Eve is something I have hated for quite a while, even as a teenager I could never see the fun in standing around in a packed pub, with a load of strangers vowing to stick their tongues down your throat on the stroke of midnight. In fact I have only ever been out once (twice if you count a house party where we saw in the year 2000) on NYE and that was a disaster as a wisdom tooth decided to erupt, dragging a piece of gum up with it meaning every time I closed my mouth, I felt like I had been kicked in the face. Due to the severe levels of pain I had to call it a night around 1am, which I found out did not go down well with the friend I was with. It’s lovely when you find out through mutual friends your pain has ruined someone else’s evening! I also had to wait until January 2nd before I could have the bloody thing removed. I don’t know if that tainted my feelings towards NYE but another year passing me by doesn’t bring out the best in me.

 

The New Year also brings an anniversary, January 5th 2007 I came down with the worst migraine I have ever experienced. When the migraine headache cleared, I was left with the right side of my face feeling like it was coming around after a dental anaesthetic, by 11th January (2007) I developed ptosis. This year these dates will mark a decade of ever worsening health, when normal life finished and navigating the world of chronic illness started. This year more than ever I couldn’t shift the black cloud that was hanging over me on December 31st.

 

This last Christmas holiday period has been one of the worst I have experienced health wise. Normally I rally over the Christmas period, not this year. My PoTs ( I do hate it when I say my xxx condition but what else can you say?) was relatively well-behaved, other than two micro blackouts. My EDS has been naughty but just for two days however it was so bad that I would have happily ripped out my spine and pelvis if it had been at all possible. This year for a bit of variation I have been plagued by GI (gastrointestinal) issues.

To give you a bit of background a first degree relative of mine is probably going to be diagnosed with Coeliac Disease. In this person the disease has been asymptomatic or silent on the GI front. Some might think they have been lucky as GI symptoms with Coeliac Disease can be pretty awful but the problem with asymptomatic CD is that it can wreak havoc elsewhere in the body. Many people think that CD just means that you can’t eat bread or more specifically anything containing gluten but they don’t know why this is. To explain it quite simply the body sees gluten as an enemy and in its effort to destroy the enemy it also destroys the small intestine by damaging the villi which help you absorb your food. It is an autoimmune disease and it can only be treated (not cured) by never eating gluten again. For more information https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/

Now to test for Coeliac Disease you must have been eating gluten for at least 6 weeks prior, as the blood test looks for Antibodies IgA or IgGG. By eating gluten if you do have CD these antibodies will be in your blood at a high enough concentration for the test to be positive. I have been rubbish with gluten for years, eating large amounts (by which I mean more than the equivalent of two slices of bread a day) I get horrendous stomach cramps and diarrhoea. I feel as if I have been poisoned, after eating gluten. I have been tested previously for CD but it has always been negative. Doctors have always told me that it is IBS that causes my stomach pain and diarrhoea. No one has listened to me when I have told them the correlation between eating gluten and being ill. At various points in my life the symptoms have got so bad I have gone gluten-free and you guessed it the symptoms went away. So over Christmas knowing I would be asking for a blood test, I knew I would have to eat gluten.

I love mince pies, french bread, Christmas cake, every Christmas goodie seems to contain gluten and I indulged …..a lot. I have never in my life been as ill as I have this year over Christmas with stomach pain, diarrhoea, wind, bloating etc. In fact two days out of 14 I didn’t eat at all as I hurt from the back of my mouth downwards. I got through my IBS medication at a rate of knots. It got to last Sunday and I had to admit defeat, I just couldn’t do this anymore. Without over exaggerating I felt like I was dying, my joint pain was getting extreme, muscle pain the same, my shit did quite frankly stink as did my copious amounts of wind. When you fart and your husband runs away with his eyes watering you know there is a problem. When the dogs also leave the room looking at you with disgust, it’s time to say enough is enough.

 

So I have been 2 days gluten-free, my stomach has settled down. It’s still what I call a bit prickly but I can no longer feel every inch of my intestine. My stomach if it’s been  through a bad patch will take a few days to settle but it is bouncing back much more quickly than it normally would. The levels of wind have dramatically improved to be almost non-existent, much to my husband and dogs delight. The bloating has also gone, I wish I had measured myself before I started going gluten-free because I swear it’s inches smaller (but I am big anyway). My joint pain severity has also decreased, they no longer feel like they are burning. I know its way too soon to put all this down to going gluten-free, it maybe that everything felt awful because my stomach was so bad and I felt thoroughly miserable. I know when my head pain is bad, I also feel horribly unwell.

Due to the time of year I can’t get a doctor’s appointment until next week (which I actually thought was good) where I will ask if I can have the Coeliac disease blood test. I won’t have been eating gluten so the test may come back negative but I just can’t go through another two weeks, like that again. For the moment I will be gluten-free.

For those of you with Ehlers Danlos Syndrome (EDS) it maybe worth having a look at this study which shows that people with CD have a higher risk of also having EDS http://www.dldjournalonline.com/article/S1590-8658(16)30436-4/abstract

Happy New Year from Mr & Mrs Myasthenia Kid

Happy New Year from Mr & Mrs Myasthenia Kid